My Friday Book: How a woman lives an entire life in fear of discovery: “My Name is not Miriam”

My name is not Miriam

My name is not Miriam

My book club, had this one in their magazine, soon after publication and at first, I was interested but not enough to go and borrow it at the library. Then two weeks ago, I had my nails fixed and the woman who does them said “You who read so much. I just had a book recommended to me called something like ‘my name is… I forgot the name!”. I told her “It is called My Name is Not Miriam”. I decided to go and put myself up in queue for it after all. It was a fairly quick read even though it covers over 400 pages. Was it good? Well, it depends. Would I recommend it to others? I don’t know. Depends if the person knows anything about the Holocaust or not really. It is good to a have a good dose of pre-knowledge. That said, the author has done a lot of research for her novel but as she leaves a lot out, you need to fill in the gaps yourself.

My first problem with the book is that it leaves a sour taste in your mouth, not because of the topic, but because of the point in time, that it is appearing. The Roma or Gypsy beggars are becoming an increasing problem in this country, people resenting them more and more as they flood over our borders. 3400 this year! But I really doubt the authorities really know how many are here. Since one fat Roma woman is driven out to our village every day, it means that there are more than they think. If you can start flooding villages, after already having flooded towns, then it is bad. And to write a novel like this one, to make us feel sorry for the Roma, is not entirely kosher in my book, as they say in the US. It is not going to create compassion or sympathy for the people of Romania, that has chosen to come here only to beg and pollute, doing nothing to contribute. Because there is a difference between them and the novel’s Miriam.

My second problem with the book, is the way it is written. Jumping back and forth in time, between 2013, 1948, 1944 and with glimpses of the time before that. One paragraph can be in one decade, another one, in another decade, and I really like order and also to know how old a person is at said times. I need a sense of time and I think this way of writing has become a cheap trick by authors, to make their books more interesting. But in my view it really does not make them more interesting. If the story can not be told in a more organized manner, then there is something missing.

My third problem is that I get bored with Miriam and her fear of being discovered. It gets to become like listening to a scratched record. And at the end of the book, I sat and felt like a question mark, since at that point, it felt like a pointless book! So when I rated it on Shelfari, I could not give it more than three stars. I am not going to say it is a bad book, but it is not great either.

While Majgull Axelsson’s books apparently have been translated in to several other languages, I haven’t got a clue if this one will be, so in case it doesn’t, here is the storyline (and to make it easier for the reader of this post I WILL TRY to write things chronologically, except for the beginning):

It is 2013 and Miriam is turning 85. Her husband has been dead for several years, probably over a decade. The beginning of the book is so confusing, with her doing and thinking insane things, so you sort of lose the time frame and forget to pay attention. But this day, Midsummer’s Eve, she is waiting for her family to celebrate her, some of them living in the same house as is tradition in the family. As usual, they treat her to breakfast in bed and a gift, which her stepson’s daughter Camilla has chosen. A Gypsy bracelet which brings back such strong memories to Miriam, that she  suddenly tells her family that her name is not Miriam. After taking a shower, she scolds herself, telling herself that she must never let the truth slip out again. That she must stop dwelling on the two years she spent in the orphanage and the two and a half years she spent in the concentration camps. That she must focus on the other 68 years when she has been happy. (But has she?) She must not even let people know that her birth date of 21 June 1928, is an invented one, that she has no idea when she was born. She must not let anyone find out that she pretended to be Jewish when she arrived to Sweden and that she had no idea what that faith involved, when she decided to “convert” to Protestantism, in order to be able to marry Olof in the church and not in a civil ceremony, and subsequently becoming an agnostic, like her husband and his parents before him. This is how things are thrown out all over the book. You look in to the truth, the past, the lies, and wait for the author to come back to the events in more detail. Sometimes she does, sometimes she does not.

Yesterday, there was a debate on TV, saying that a party leader had committed a great sin by calling the Roma people Gypsies, since a couple of years ago, it was determined that that name for them, is degrading. Honestly, I have no idea what all the fuss is about. So, the Gypsies want to be called Roma. I don’t want to be called a Mormon, but noone cares about what I want. And through this book, the author goes back and forth calling them Roma and Gypsies, so I might as well just call them Gypsies. The major part of the book is set before the decision on the name Roma, so…

Who are the major players then? Miriam Goldberg or Malika without a surname. Thomas her step-son. Camilla her step-granddaughter. Side characters in the home 2013, is Thomas’ wife Katarina who is neurotic. Afraid of everything. Her husband resents her. Early on in the book, you find out that the only time she is happy is when she is taking care of her grandchild Sixten. “Noone must know how angry she really is, how sick and tired she is of her husband, how tired she is of her daughter and how she hates her mother-in-law upstairs. Noone must find out how she really wishes for them to all disappear, the entire bunch. Because she has no options. She is her husband’s dentist nurse, she lives in his house, she has no relatives and no money of her own. In other words she is forced to wait on everyone in this house, till the day she dies…”. She enters the book in the beginning and at the end, as just a sad, sad character. And Sixten does not really appear much more. Only being two years old, shuffled between his two parents, who no longer are a couple. His mother Camilla is not that important for the story either, come to think of it. But at the same time, she has an important function to fill in the book, since Miriam has to tell part of her story to someone:

Camilla and Miriam have a very strange relationship. They don’t disclose anything to each other, really, always holding something back. On Miriam’s Birthday, Camilla asks Miriam to go for a walk in the park with her and the two set off. This is when the book really takes off. The first thing which happens as they get outside, is that Kaiser, the German shepherd belonging to her neighbour, starts barking as usual and Miriam gets so tense, that Camilla notices. She asks her so-called grandmother if she is afraid of dogs and Miriam answers, “no just of German Shepherds, since they were used in the camps”. Camilla decides to suddenly give a confidence and tells her that she has failed an exam and that she had a strange episode on the underground one day in Stockholm, where these football hooligans, who are of course losers, became very powerful as a group and they knew that and that the police were scared of them. Miriam told her that one should always stay away from young men in a group. Not anything that made sense to Camilla, at that point, nor myself.

Camilla then wants to know more about Miriam’s camp experience and Miriam says she doesn’t really want to talk about it, that she has been scared ever since the war, even though she has been physically safe. For some reason she tells Camilla that Nässjö used to have another refugee from the camps too, who one day came home to her, thinking she had seen SS men in a black car. The poor woman was mad and had been institutionalised after that. Camilla wants to know why that Krystyna went mad, and not Miriam. Miriam says she thinks that it might have been because of the experiments made on the Polish political prisoners. Them being cut in their legs and then injected with something in the cuts. Krystyna had gone through those experiments. Miriam also mentions how she met the candy doctor in Auschwitz, Dr. Mengele. Camilla wonders why she called him that and she tells her that he walked around and gave the Gypsy children candy, in the Gypsy camp, because he liked them. Now she really has opened a can of worms. How does Miriam know what went on in that camp, asks Camilla and Miriam answers that she was in that camp.

How could she be? Finally Miriam, in a bitter voice, tells Camilla that she is a Gypsy and that she had to pretend to be Jewish when she came to Sweden, since Gypsies were not allowed to enter Sweden until 1954. Camilla is shocked and even worse so when she hears the reason why Miriam took the Jewish girl Miriam Goldberg’s dress on the train from Auschwitz: Because she wanted to be a complete corpse. She had not wanted to throw herself on the electric fence in Auschwitz, since when they pulled you off from there, the fingers remained on the wire, all black. Likewise, she did not want to be beaten to death, since then her corpse would be broken… She really had not tried to survive, since she had lost her little brother Didi and her cousin Anuscha, the only family she had. She just had this idea of not wanting to be an incomplete corpse or an ugly one.

For hours, she and Camilla walk in the park, and what she actually discloses to Camilla is not clear, but she starts thinking about her family. How her grandfather never thought anything would happen to them because he had a permanent living, actually two houses, one kilometer outside the village, somewhere in Germany. So what if the courtyard was full of caravans belonging to visiting relatives, he had been a German soldier once, so surely they were all safe! They were till the day when Malika, as her Gypsy name was, her little brother Didi and her cousin Anuscha, were fetched by uniformed people. 14-22 gypsy kids were fetched from her grandfather’s place that day, all screaming, being dragged from their parents, to be raised by proper people.

At that point of time, Himmler was convinced that Gypsies were the original Aryans. And the nuns at the orphanage were considered better qualified for raising Gypsy children, than their parents. Malika was no ordinary Gypsy child though, but was called Mischlinge. Mixed breed, which is what they also called Jews with mixed parentage. Her dead mother was not a Gypsy in other words.  Malika did not really mind the orphanage, considering it way better than home, since she no longer was forced to do laundry, cook and boil coffee, all day long. Instead, she actually got to go to school and to learn how to read and write. Something which partly saved her life. There was also order around them, which she appreciated. But it did not last. One day, they were told that they were going to be sent away from the bombs, to another orphanage, which was safer. Himmler having changed his mind about Gypsies being Aryans. She, Didi and her cousin Anuscha climbed off the train in Auschwitz, all confused. Malika and Didi did as they were told, but Anuscha, who had been afraid from day one in the orphanage, suddenly refused to do as she was told, refused to get undressed in front of the SS-men and the naked gypsy boys. They all got showered, including Anuscha’s dead, but dressed body, on the floor. The SS had shot her for disobedience. What then met them, after the tattooing, was a world of horror. Two small children in the Gypsy camp, where all families stayed together, and noone took them in, since they were not family.

Dr. Mengele gave orders for her to be in the group digging ditches. Jews were marched by every day and never coming back, the Gypsy camp being right by the gas chambers, them taking everything in. Every day, Didi waited for her by the gate, getting thinner and thinner, then he got diarrhoea and he started to complain about a pain in the mouth. Soon he had a hole through his cheek which showed the teeth and gum through it. The disease being called Noma. That is when Mengele gave orders for the Noma children to receive milk for breakfast, margarine for the bread, fruit as a snack and three slices of ham per week. All the Noma children started to get well and got back the will to live. Then Mengele started phase three and all the extra food was withdrawn again, right when the sores and holes had almost healed. Within weeks Didi died, his entire face having been eaten up, by the mouth gangrene caused by starvation.

When Malika was loaded on to the train which would take the women to Ravensbrück in July 1944, her little brother Didi had been dead for six days. She had saved a piece of old bread for the journey , which she had no idea how long it would last. Standing on a ledger in the cattle car, she pinched off a piece of the bread in her pocket and put it in her mouth. A Czechoslovakian woman saw her chewing and started screaming that Malika had stolen the bread from her, being a Gypsy. Even though the woman stood many meters away from her, them standing packed like sardines so that no movement had been possible, all the women came to behave like animals, not thinking logically, pulling her down from the little ledger she was standing on, ripping her dress to pieces and beating her. When they arrived in Ravensbrück, she knew she would be punished for the ripped dress, so she stole a dress from one of the 13 dead women, on the floor. When she stepped out of the cattle car, she realized that the dress had a Jewish star on it. The dead woman’s number, 389, matched Malika’s middle numbers, on her arm. One young woman discovered that Malika was a Gypsy wearing her friend Miriam’s dress, but told Malika, “You are now Miriam Goldberg, and don’t think they will go easier on you because they hate us more than the Gypsies”.

By now, Ravensbrück was collapsing. The card file system did not work any longer, too many prisoners arrived every day and the SS did their best to get rid of them, by sending them to weapons and ammunition factories, as well as to often bombed building sites. Food had become really scarce of course, with too many prisoners, and more and more died of starvation and disease. But when Miriam stood waiting for lunch, for the first time after being quarantined, she was impressed, since they got a piece of sausage and a piece of bread, with no sawdust in it, some artificial marmalade and margarine, plus coffee made from beats. The woman dividing it between 16 people, introduced herself as Else Nielsen, political prisoner. Else asked her if she knew how to read and she said yes. Where did she learn that? In a convent. Else said that she was lying, because convents in Germany did not take in Jews, and she wanted to know the truth. She never did find out though.

Miriam had spent the days in quarantine scratching hard at her number, to get the Z away from before her number, in order to get exactly the same number as Miriam Goldberg. Nothing more indicating that she once was a Gypsy or Zigauner. Else decided to take her under her wings, even though Miriam didn’t reveal the truth. Else helped her to get a good bed and enough sleep, making sure that she cleaned herself in the morning, like a mother would, and finally she made Miriam stand in a safe spot during the morning roll call. Sadist Kapo Irma Lunz, who obviously had a screw loose, beat a young girl to death, because one girl was missing, during the first morning roll call, which showed Miriam exactly what a dangerous place this still was. The missing girl had been selected for war-factory work the previous day, which was why she was missing, but noone could tell the Kapo this without being beaten to death. Irma Lunz was an absurd character of her own, chubby, wearing lipstick, summer dresses instead of prison outfit, black socks and brown shoes which fit. She swore and behaved abominably, which shocked more than one woman in the camp.

Else also managed to get Miriam a job in the sewing factory, where they were safe from bombings, since it was situated inside the camp. Miriam learned quickly how to sew and did a good job, but Else could not do a thing right as far as sewing went, but since she spoke four languages, she got to stay and translate and carry out supplies to the sewing inmates. She spoke Norwegian, French, Russian and German. Miriam was happy with all of Else’s attention, till she received competition from Else’s friend Lykke, who arrived back from detention one evening together with another starved Norwegian, Marie. At the same time as they arrived, Else also broke Miriam’s heart, after a gypsy girl got attacked having stolen an onion and Else having snidely said “Well, everyone knows what Gypsies are like…”. Miriam realized at that point that she was truly alone. Not just because she had no family among the Gypsies anymore. Also because she was falsely pretending to be a Jew. She started getting really depressed because of what Else had said, but Lykke and Marie noticed her changed attitude towards Else, and told her that she must live and keep happy for Else’s sake. It turned out that Else had got stronger because of Miriam, having someone to look after, instead of her own daughter Åse, who was hidden somewhere in Norway. Her husband having been Jewish, he had been sent straight from Norway to Auschwitz, and Else feared he must be dead. Miriam realized after Lykke’s and Marie’s disclosures that she had to stop thinking about Malika, about being a Gypsy and just get on with being Jewish Miriam and act like Else’s daughter Åse. She never stopped thinking about it though! Never!

Disaster then struck when Norwegian Bente received a package from home. Her family had sent her a pretty apron and while seasoned Else told her not to wear it, since it would create envy in the sewing factory, Bente decided to wear it anyway. She left the factory that day, all beaten up and someone had ripped off the pocket, frills and ties on the apron. The camp was overfull and there were tons of new guards that day. Lykke and Miriam had to carry Bente back to their barracks between them, while Else walked in front, telling them where it was safe to walk. But they still got stopped, ordered to drop Bente, and the three had to go outside the camp, to help raise a tent, for the surplus prisoners. The hungry women out there failed, over and over again, to get the tent up and Else got beaten up for it. They got one hour of sleep that night and when they woke up, Bente was dead and Else’s spirit was all broken, as was her front tooth.

When Lykke and Miriam tried to keep an eye on the depressed Else in the factory, Lykke managed to sew things wrong and Miriam got so panicked when it was discovered, that she accidentally sewed herself in the finger. She got beaten up and put in the punishment block for sabotage on SS-uniforms. She got to share cell with ultra-thin Sylvianne from France, who had been in there for two weeks, let out for a couple of days, and now was back for no reason at all. During the first inspection, Binz, a terrible guard,  told Sylvianne that she didn’t have to be sent to Auschwitz for sonderbehandlung, that she had been chosen to get special treatment in Ravensbrück. Sylvianne didn’t want to be the first to be gassed in this camp, so she started starving herself, and there was nothing Miriam could do. After Miriam had received her 25 lashings, she got thrown out of the punishment block, in to a strangely darkened camp. The bombings had left the camp without electricity for days at a time, which meant rest for the increasingly sick population. When Miriam finally located the barrack in the dark, Else was one of the ones with fever. Then suddenly one day, Red Cross buses arrived with care packages for almost everyone. Miriam grabbed one for herself and one for Else, but Else had very few hours left to live. In the morning, after the treat of chocolate, fatty cheese, crackers etc. she died.

After that Miriam spent a while being unconscious till she was woken by Lykke one day, standing wearing a real coat, screaming to her that she must get up because it was their last chance of getting out of there. Marie showed up from nowhere and Lykke and she carried Miriam between them, clad in a nice coat as well. They told her that when they got to roll call, the Red Cross would be there and she must stand on her own and look healthy, even though she now had caught Else’s typhoid. Lykke and Marie somehow managed to get her on board the transport to Denmark and someone gave Lykke medicine to give Miriam. Miriam was brought to a Swedish hospital after that, till she was well again, and then she was sent on another train with Jewish women, who could not understand why she didn’t understand Yiddish. They were all on their way to the small town of Aneby. The arrival became traumatic for them since the entire community went out to see the refugees arriving, including the men in their brown uniforms, from Swedish Steelwool or SS. The women from Ravensbrück assumed they were to enter a new camp, seeing the uniforms with SS written on them.

They were all put in the concert house of Aneby. The Jewish women were having nightmares, they were bored, angry, behaved poorly but Miriam had a plan. She was not going to behave like them. Instead she set out to make a good impression on everyone, doing everything to melt in, learning Swedish, copying facial expressions from the Red Cross nurses and so forth. Noone must ever know she was living a lie and that she was a Gypsy. Concert pianist Jozefa talked to her one day and told her exactly what she felt about Gypsies, which made Miriam stay as far away from the other women as possible, who were all Polish Jews. She stayed with the Red Cross sisters in the kitchens instead, learning more Swedish, since contrary to the others, Sweden was were she wanted to stay. After the four weeks in quarantine, the refugees were finally allowed to move around more freely and Hanna Adolfsson from the Red Cross committee, showed up to make a registry. She was so impressed by Miriam, who was learning Swedish very quickly and who claimed that she had no relatives. Miriam had concocted up a nice story for herself, having been born in Berlin, grown up in München and whose family was taken to the Polish ghettos, while she went to Auswhitz and Ravensbrück, her father Josef dying in a transport. All of it except the camps being a big lie.

Hanna was a teacher of German and English, at a girls’ school in Jönköping and also worked for the Red Cross. The reason why Hanna took Miriam in, was that she thought that Miriam was a Jewish girl from a good family. To Miriam, Hanna, became everything. Hanna, unknowingly, became the model for everything not Gypsy. For one, she became Miriam’s style icon. When Miriam’s hair had finally grown out, she had shaped her bangs to a 6 with sugar, and Hanna told her how vulgar it looked, making her look like a Gypsy. Miriam never did that mistake again! Hanna was also the one who told her to always wear blue, because the blue colour is never wrong and stylish. But Hanna, was also her first employer, whose maid she became for two years. Like Hanna said, it was an opportunity for her to learn manners and etiquette, which should have been her mother’s job to teach her.

Miriam continued being petrified two years after arriving to Hanna’s. She studied as what was called a privatist, at Hanna’s school, to catch up on other peer’s education. (Only the rich getting to study, back in those days!) She tried to behave like the lady Hanna wanted her to be. But still she was scared of people finding out somehow, who she really was and sending her back to a destroyed Germany, to be hunted, hated and despised again. It didn’t help when Hanna went on vacation for a couple of days and Miriam experienced a traumatizing event, when she dutifully went out to buy milk for herself. A group of young men stopped her on the street, while trying to catch a “traveller” and the lady in the milk shop made fun of her German accent. She returned home and looked in Hanna’s encyclopedia under the letters T (Traveller), G (Gypsy) and J (Jew) and what she learned made her mad. The Gypsies were not allowed to enter Sweden, not even the ones who had escaped the gas chambers. A couple of days later, she heard of the uprising which had occurred in the town, and walked down to the area herself, to see if it was true. A team of vigilantes, were still going  after travellers and when they saw her dark skin and black hair, she got chased by them, she tripped on Hanna’s dog’s leash, and while laying down, five young men kicked her all over. She found out that day that Sweden and Småland was no paradise after all, that it was almost as bad as in Germany. She never told anyone what happened to her that day though. Just stored the experience, getting more convinced that she must continue lying.

At that time in 1948, she had also got better acquainted with Hanna’s brother Olof, 10 years younger than his sister. He was a dentist living far away from “dangerous” Jönköping, in little Nässjö. He never paid any attention to her really, but was told to keep an eye on her, when Hanna was on her vacation, which he gladly did, since he had his wife ill with toxemia, in the hospital anyway. It did not end well though, since his wife Marianne died after giving birth to Thomas, hers and Olof’s son. That death affected Miriam in a big way, since ten days later, Hanna and Miriam took the baby home to Hanna’s flat, because Olof would not have anything to do with him, deeply mourning the loss of his wife. Six weeks later, Hanna took Miriam and baby Thomas, to Nässjö, where Olof lived, for Miriam to be Olof’s house keeper and Thomas nanny. Olof did not want to think about the past and did not want to deal with his son. He tried to escape it all and expected that Miriam, who had been through so much, would not want to talk about her past either. So they stayed silent and went about their lives, till he four years later, saw her in a beautiful turquoise dress, made for her by a seamstress, for Olof’s new brother-in-law’s 60th Birthday do. He fell in love with her. But he still spent the rest of his life running away from himself by travelling further and further away on their vacations. Going to Italy, the Canary Islands and Mallorca in the 1950s and Tunisia, Egypt, Turkey, India, Thailand and Mexico after that. He wanted to visit all countries except Poland and Germany, since he did not want Miriam to be reminded of her past. But that was not all. He would not let her have a child either, not wanting to lose her in child-birth as well, and she really did not mind, after not being able to save Didi. She became the doting mother of Thomas instead, spoiling him rotten. Nässjö became her little safe haven where she could hide with her enormous lie, but also hiding her personality, as well as all her desires and dreams, knowing that if Olof ever found out the truth, he would have her thrown out of the country. So silently, she waited on him hand and foot, just like Katarina. Did she love Olof? One never finds out.

How did it all end then? Olof never found out the truth, dying from Alzheimer’s. Thomas did not really find anything out either, at the end of the day. All he said when she got home from her’s and Camilla’s walk, was that he had known all his life that she was hiding something. That for years, he had looked in her things to find a clue as to what was going on, why her face was always full of fear and something else. And Miriam continued being scared of being found out but having accepted that she is both Malika and Miriam. The book really leaves you sort of empty. None of the characters are happy and are all living their own lies!


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Autism UN-awareness in Sweden: Is it alright for a teacher to physically hurt a pupil?

That is the question a Swedish evening newspaper has taken up in an editorial. Instead of looking at why Swedish classrooms are rowdy nowadays and Swedish schools now rate poorly, in the world statistics, the newspapers focused on the poor teachers. Teachers who go on sick leave because they can’t handle their job situation. Teachers who get burned out and psychologically broken. The newspaper more or less blames it all on a few rowdy pupils, whom the teachers are not allowed to touch. And when they have touched them, the parents have had them reported. The newspaper’s very subjective biased view is that it is not right, that the parents have this right and that officals stand on the parents’ side. The example of a rowdy child, which was reported having disturbed the class by filing on his desk with a ruler, was given. And the newspaper was outraged that the teacher, who brutally removed the child from the classroom and did win in court, has been unofficially told via officials that what was done, was wrong.

What the story did not tell, was that the boy has Asperger’s and ADHD. And he can not cope, so he moves his ruler over his hair and desk, in frustration, which is something his mother described on Facebook. Most people admire her for answering the newspapers accusations. But one man in particular, decided to tell her, one thing or two. He decided to point out that he has nothing against children with autism at all. They have all the right in the world to get an education and be taught by teachers and assistants who have the education for it. Notice something here? That sort of school doesn’t exist in Sweden! Except in a few cases where parents have started them up. Independent schools who only take in about 6-8 pupils. Not good enough when one in every 48 child in Sweden has the diagnosis of autism! Let alone all the ones with ADHD.

The man went on to say, that the only thing which matters to him is that his seven year-old son gets the education he is entitled to and gets all the attention from his teacher, that she is currently giving a special needs child. He also pointed out, that his child should not have to get physically hurt in school by these rowdy children. That school can not cater to a minority, that the majority are the ones who rule and must rule.

I felt so insulted that I had to answer the man, but also the mother who explained what had happened to her son in school. The politically correct thing in today’s Sweden is to say that of course these children deserve education but what the majority does not understand, is the fact that there is no money to do so in the way these children can thrive and cope. They are thrown in to the fish pond and only the strongest and fittest will survive. And it for sure is not the neurologically handicapped children. Today’s Swedish school with 30 pupils in each class, is definitely not set up for these children to melt in to, to learn a single thing and to be able to cope. The pupils who create havoc in the classrooms are usually children with ADHD or autism who are having meltdowns. They are not having meltdowns because it is fun to ruin the lesson, which is what this man’s impression seems to be. In my answer to him, I quoted Ellen Notbohm’s book “10 things every child with autism wishes you knew” and Naoki Higashida’s book “The Reason Why I Jump” (him being the expert since he is autistic himself), in that these children can not be blamed for their behaviour, because that assumes that they have planned their actions. Which is not something they even can do.

I also pointed out that the way that he spoke, of THEM as being in minority and that they have to bend and fit in to the scheme of the majority, smacked of 1930s Nazism. What are we parents supposed to do when school does not work? When our children have meltdowns and it affects THEIR precious little normal children? Have them put to sleep or what? Maybe I am too assertive, but that is what it all boils down to in the end, isn’t it. They want our children to go away. My son’s classmate tells him “I wish you would die!” What are we going to do with this minority which will not comply to society’s look on things, a society which only has one view of how things ought to be done. Who can’t accept that some people do not fit in to the mold because of the lack of dopamine (Autism) or over-production of it (ADHD).

There was a time, when it was not alright to say that the Jews deserved to be exterminated in Auschwitz. Today, all of Europe screams for the extermination of Israel and of course that means the extermination of the Jews in it. Imre Kertész wisely said that what did not used to be politically correct to say outright in Europe, is now alright to both think and say. And when the Jews are gone from Israel, then the extermination will move on to the rest of the world’s Jewry. Why do I bring it up here? Because it is not that many decades since Sweden sterilized un-desirables and lobotomized them. Sweden basically had its own T4 program. No, we did not herd all our handicapped people in to a lorry and had them gassed, like the Germans did in the 1930s, till they got busy with the war instead. But it doesn’t seem like people learn from history at all. And what the man told me rudely on Facebook, was sheer and utterly nazi-thoughts. Cleverly disguised as a concern for “autists”, as he called them. What a word! He said he had tender feelings for them but has nothing left over for people with ADHD. And he accused me of being un-modern or old-fashioned, when I claimed that neuro-psychologically handicapped children can’t help their meltdowns. He brought up an old law of 1900, where a drunk was excused for having caused a traffic accident, because of intoxication. His argument being that my ideas equal that law. Well, a drunk knows what he is doing when he puts that bottle to his mouth doesn’t he? That it will lead to intoxication and that under no circumstances should he really, sit down behind a wheel after consuming the bottle. What on earth does that have to do with autism and meltdowns?

Seriously, I have not bothered answering this man again. He has proven to the world what an idiot he is. His motives are selfish. His child is normal and should be shielded from handicapped people. And that is a parent’s prerogative. To decide how to protect his own child. BUT there is no excuse for the sort of ignorance people in this country have. They see the lack of funds in the schools. Teachers crawling on their knees with too much work. What on earth make them think that there is money for special needs children, when there is no money for anything else? It means that someone will suffer and it is not the normal children who suffer the most. It is the children with ADHD and autism. They KNOW that they are hated and still they can not control their behaviour. They react to everything that goes on around them. They are the sign of the time, they show how sick this society is. Indeed, they are the normal ones! The rest of us are like the frogs who are put in to a pot of water and who stay in that water till it boils and they die, never understanding what just happened. Our children refuse to stay in the pot! They fight their way out of the pot, they protest loudly, while we stay, accept the increasing heat, and die.

To evening newspaper Expressen I would only say this. Get your facts straight. Look at how the schools’ resource centers turn down most applications for extra funds, for children with autism. There is not even any use anymore, to try to apply for  children with ADHD. Too many children have it. It would bring us to the level of Greece’s finances, if help was given to those children! Look at how many of these children are bullied by normal children, with fathers like the one on Facebook! Look at how these children get blamed for everything from morning to evening, every day of the year, get bawled out and screamed at by grown ups, and then write an article about self-esteem being totally absent in all these children! Look at how schools will not do the most fundamental thing like paying for someone coming in to teach personnel, from the resource centers, about the handicaps present at their schools. Look at all the free lectures and free help that can be brought in, providing someone like the headmaster sits down and surf on the internet, to find these things. The worse thing in Sweden today is the ignorance. That no matter what all psychologists say, habilitation, BUP, you name it, all the experts, deep down, the population with normal children are of the opinion that the only problem with these children, is really bad upbringing and that the parents want an excuse for their failure as parents. THAT is the root of all evil. If you can not get rid of that opinion, nothing will get better, but our children will eventually end up in institutions or a new T4 program.


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Svar till Expressens: “Ibland är det rätt att kränka elever”

Jag har bojkottat Expressen i många år eftersom jag anser att det är en skvaller och fascist-tidning. Men igår satt jag och läste ett inlägg på “Barn i Behov”s facebook sida och kunde inte annat än kommentera, eftersom där fanns kränkande kommentarer. Normalt är jag ingen facebook användare och inte bloggar jag på svenska heller, eftersom jag totalt struntar i att ha en svensk publik för mina åsikter. Men ibland måste man göra undantag. En person uppmanade till att skriva in till Expressen och klaga. Men nej tack. Jag godtar inte att någon redigerar mina åsikter eller inskränker min yttrandefrihet längre.

Vad satte igång facebook debatten? Jo, Expressen skrev en ledare om att det är så fruktansvärt synd om dagens svenska lärare. De blir psykiskt sjuka av att jobba i de svenska stökiga klasserna. Och tar de i med hårdhandskarna för att få bukt med barn som “lever rövare”, så blir de anmälda för misshandel eller kränkning, av sårade föräldrar. Det är vad ledaren säger. Och de har tagit upp ämnet eftersom en pojke satt och filade med sin linjal på sin bänk och läraren tog brutalt och eskorterade ut honom från klassrummet eftersom han störde ordningen. De flesta svenskar kommer skaka på huvudet när de läser det och tycka, rätt åt ungen.

Men som vanligt lämnar tidningen sanningen utanför. Mamman som startade debatten, är förmodligen pojkens mor. Och som alla föräldrar till neuropsykiatriskt handikappade barn, så kunde man ju räkna ut att barnet som levde rövare har Aspergers syndrom och ADHD. Många av dessa handikapp kommer hand i hand, det ena utesluter tyvärr inte det andra. Vad tidningen skulle ha frågat sig i stället, var naturligtvis, varför reagerade pojken som han gjorde?? Varför sitter han och filar med linjal på bänken? Det gör en gråtfärdig att varje dag inse hur dumma i huvudet folk är, som sitter med universitetsutbildning och som skall informera om dagens Sverige. Första saken jag fick lära mig på journalistutbildningen var OBJEKTIVITET! Nej, en ledare behöver inte vara objektiv, samtidigt förstår inte “faster Agda ute i på landet”, att författaren är subjektiv! Och det är för “faster Agda”, en tidning skall skrivas, enligt min journalistik lärare.

Nåväl, faster Agda. Du lär inte gå från Expressens ledare till Ellen Notbohms bok “10 saker varje barn med autism önskar att du visste”. (Fritt översatt) Nummer nio som egentligen borde ha varit nummer ett, enligt min mening, eftersom det är detta som samhället och skolan får se, men kanske inte allt det andra, är: “Identifiera vad som orsakat min härdsmälta. Härdsmältor och explosioner är hemskare för mig, än för dig. De uppkommer eftersom ett av mina sinnen har belastats över sin kapacitet eller på grund av att jag tvingats passera gränsen för vad min sociala kapacitet förmår. Om du kan hitta orsaken till min härdsmälta, så kan den förhindras i framtiden. … Kom ihåg, att ALLT JAG GÖR är kommunikation. Den talar om, när mina ord inte räcker till eller inte finns där alls, hur jag reagerar på vad som sker runt omkring mig.” (Kapitäler tillagda av vederbörande, eftersom en kommentator personligen attackerade mig med att vara omodern, när jag säger att de kan inte rå för hur de reagerar. Då är alla psykologer och autistiska barn omoderna!) 13-årige autistiske Naoki Higashida från Japan håller med i sin bok “Orsaken till att jag hoppar”.

Notbohm återkommer i ett längre kapitel om härdsmältor. Eller meltdowns som det heter på engelska. Dessa härdsmältor är alla skrikande, “klara budskap från ett barn som inte på något annat sätt kan säga dig eller visa dig att något i dess omgivning har förorsakat att dess känsliga neurologiska banor helt har spårat ur eller gått överstyr.” “Vi måste ALLTID utgå från att barnet skulle ha agerat på ett acceptabelt sätt OM DET KUNNAT!” Att barnet inte lyder, har inget med brist på motivation att göra. Vad lärare och alla andra måste göra, är att vara detektiver. Vad har triggat alltihop. Vad får pojken att fila med linjalen på bänken? Vad får ett barn att skrika och storma ut ur klassrummet? Vad får ett barn att börja kasta saker runt omkring sig? Detektiven dvs. läraren, har en stor uppgift. Är det biologiskt? Hungrig? Trött? Är det psykologiskt? Är det omgivningen? Och i nio fall av tio, är det alltid omgivningen.

Autistiska barn får om och om igen gå igenom frustrationen att inget blir som de tänkt sig, kraven som satts går inte att uppnå, de förstår inte ens vad de skall göra. Inget fungerar, varken motoriskt, socialt eller språkmässigt. De blir också ständigt besvikna eftersom vi vuxna inte alltid kan hålla vad vi lovat och vi kan inte se till att allt förblir detsamma. Vi lever i en värld där allt skall gå fort och vi omges av en väldigt självisk värld. Det hinns inte med att försäkra sig om att allt förblir rutin och familjärt för dessa barn. Och hur är det med alla kränkningar, alla de som läraren väljer att blunda för. Min sons klasskamrater har påpekat att han är fet, när han är lång och smal, de säger till honom att de önskar att han vore död, att han är korkad eftersom han måste ha lektioner med ettans elever fastän han går i tvåan, att de vill att han skall sluta på skolan. När pojkarna på skolan smutsat ner på toaletten eller kissat utanför stolen, skall jag säga, så blir han alltid beskylld och utskälld av städpersonalen. När han sitter och leker snällt i ett hörn av skolgården, eftersom ingen vill leka med honom, så kommer de andra eleverna fram och säger elaka saker, kastar saker på honom, förstör det han gör, allt för att trigga en härdsmälta och det är precis vad de lyckas med. Men lärarna kan inte förstå varför HAN gör som han gör. Men så får det ju inte gå till hör jag någon säga. Nej, men så går det till när vi vuxna låter det ske. Har ni inte suttit och sett “Rännstensungar” och 30-talets mobbing? Det är väl inget som förändrats på 80 år?

Jag anser mig själv som fullt normal, men under hela min grundskoletid blev jag utsatt för mobbing. Det var mitt namn det var fel på, att jag bar glasögon, att min mor sydde mina kläder men framförallt, att jag gick i arbetarklass-skolor i en arbetarklass-stad, där allas mål var linan på Saab eller Volvo. Jag var smart, jag älskade skolan för den lärdom jag där fick inhämta och jag fick högsta betyg i mina ämnen. Det ser barn inte som något positivt, utan som en brist som man skall slå ner på. Jag lärde mig tidigt att sätta poker ansiktet på. Visa ingen reaktion, så tröttnar VISSA mobbare. Jag lärde mig att gråta inombords. Men mina söner med autism och ADHD, har inte den spärren. Det sociala sinnet fattas i deras hjärnor från födseln, enligt engelska psykologen Uta Frith, som är en expert på autism. Vi andra har fötts med det och använder det så fort vi kan. Men mina söner har det alltså inte och de får härdsmälta i stället, när de utsätts för mobbing.

Härdsmälta lär du också få se när barnet inte tycker att saker är rättvist. Men vad är rättvisa? Enligt min facebook attackerare så har rättvisa med massan att göra. De skall ha rätt att bestämma vad som är rättvisa eftersom de är fler. Men psykologer anser att den rättvisa vi talar om idag, är inte den rättvisa dessa barn behöver. De behöver inte lika utan de behöver vad de specifikt och individuellt behöver, för att nå framgång.

Jämlikhet är inte alltid Rättvisa. Rättvisa är när alla får samma chans till att lyckas!

Jämlikhet är inte alltid Rättvisa. Rättvisa är när alla får samma chans till att lyckas!


Varför lever då Expressen-pojken rövare? Vems fel är det verkligen att läraren blir psykiskt sjuk? Vad svenska befolkningen och ledningen på Expressen inte verkar fatta, är att pojken reagerar på något som vi har skapat. VI inte pojken! Vi har ett samhälle idag som inte vet vad solidaritet innebär längre. Vi har ett samhälle som leds av politiker som glömt hur den verkliga världen ser ut. Dagens Sverige lever på sina forna segrar. Bästa skolan i världen. Inte längre. Och det har inte med barnen att göra alls. Varken de normala eller de med ADHD och autism. Allt bottnar i vad clownen i “Cabaret” sjöng om: “Money makes the world go around!” Jo, världen styrs av pengar och den styrs av människor, vars ändamål är att portionera ut dessa pengar till de som skriker mest. Men barnens skrik överröstas, det är ingen som hör dem och deras föräldrar körs över likaså.

Min kommun säger att de inte har råd att ha mindre klasser än 30, universitetsstad som den är! Men ändå gör kommunen och dess politiker allt för att motarbeta friskolorna, som oftast inte kan locka till sig så många elever för varje klass. Hur i hela friden skall dessa barn som behöver lugn och ro, kunna fungera i skolklasser med 25-30 barn? Är det någon på Expressen som har suttit i ett rum med 30 skolbarn? Är det en slump att skolsköterskorna tvingas sätta upp ett elektroniskt öra i klassrumen för att varna för höga decibel? Ett barn som hör ALLT, minsta knappnål falla, som har överkänsliga sinnen, kan inte hantera en sådan situation. Ett barn kommer sitta och fila med en linjal för att få utlopp för den frustration han känner. Ett annat barn kommer skrika. Ett tredje kommer hålla för öronen eller sticka, vilket är vad min ene autistiske son gör. Eller kommer springa runt och flaxa med armarna vilket är vad min andre son med autism gör. Min son med ADHD går och sätter sig på toaletten i 20 minuter. Alla barn med neuropsykiatriska handikapp reagerar. Sättet skiljer sig åt eftersom de alla är olika individer.

Vad som fick my fly förbannad när jag läste mammans insändare på Facebook, var inte det hon sa, för det är vardagsmat för oss alla, utan de dumma kommentarer som en viss Tony Arvidsson och senare, fler stod för. Och jag har valt att nedanför redogöra totalt för denna så kallade konversation, eftersom han är ett sådant klockrent exempel på den smygnazism, som både jag och Imre Kertész kallar detta svenska beteende (se post om hans dagbok “… From Budapest To Berlin”). Man säger att det är helt okej för dessa barn att existera, man har till och med lite ömma känslor för dem, och visst har de rätt till utblidning. (Man får inte säga annat om man inte vill bli anklagad för att vara politiskt inkorrekt.) Men håll dem långt borta från mig och mina barn! Varsågod, läs och begrunda:

Tony Arvidsson på Facebook: “Jag håller med om att barn som har Aspberger eller andra sjukdomar, speciellt inom autismspektrat, ska ha rätt till en utbildning och skolgång där dom kan mötas av personal med kunskap och resurser. Dock anser jag också att min helt vanliga 7 åring ska ha samma rättigheter och få lov att lära sig i en miljö där han inte ska riskera att bli utsatt för fysiskt våld eller att en lärare inte har tid att hjälpa honom för att någon annan elev kräver lärarens hela uppmärksamhet. Det pratas så ofta om att visa förståelse, men det måste också göras åt andra hållet och hur man än vrider och vänder på det kan det aldrig vara rätt att massan ska behöva lida pga enskilda individer. Att visa förståelse och till viss del anpassa sig är aldrig fel (vilket jag lärt mig speciellt små barn är mycket bra på om dom får riktig information) men man ska inte behöva lida.”

Mitt svar: “Så Tony Arvidsson m.fl. tycker att allmänheten skall skyddas mot dessa vilda och hemska barn. Förlåt men för mig låter detta som 30-talets Nazi Tyskland där det bara fanns plats för friska och normala människor. Nu är det så att fler och fler svenska barn får diagnos autism. Vart 48:e barn. Men vad händer med lagstiftningen, vad händer med samhället som skall ta hand om alla dessa barn med diagnoser. Ingenting. Jag har tre barn med autism och en med ADHD. Skall de avlivas tycker du, Tony Arvidsson, så att ditt barn kan gå säkert? De är inte sjuka. Autism och ADHD är handikapp som barnen aldrig kan botas från. Och det är inte jag som förälder som väljer att de skall gå i vanlig skola. Det finns inget annat att välja på i Sverige. Skall lärare ta i hårdare? Ja, då tycker jag alla vi föräldrar med handikappade barn, skall polisanmäla skolorna för att de inte uppfyller den vackert formulerade skollagen. Jag börjar undra om den fungerar eller efterföljs på en enda svensk skola. Skall vi få ett land med vart 48:e barn som sitter hemma, för att de inte är välkomna i svenska skolan?Jag är såååååå trött på att min ene son skall straffas för “dåligt beteende”. DET FINNS INGET DÅLIGT BETEENDE HOS AUTISTISKA BARN! De reagerar på omgivningen. De planerar inte sina dåd. Deras “härdsmälta” är en reaktion som de inte kan påverka själva.

Tony Arvidsson svarade ilsket med ett personligt påhopp:  “Ursäkta, men om du inte kan läsa mina ord utan att lägga dina egna värderingar i det hela kommer debatten inte att ta sig mycket längre. Inte en enda gång skrev jag att de inte har rätt till sin plats i samhället, jag vågar tom påstå att jag påpekade motsatsen. Jag säger heller inte att de har “dåligt” beteende. Gällande debatten om den ökade diagnossättningen, då speceillt ADHD får vi ta en annan gång då min syn på denna explosionen är rätt stark och inte PK. Jag har dock en betydlig klarare bild av autister och betydligt mer mjukhjärtad till dessa människor. Oavsett orsaken till hur dom beter sig så ska handlingen inte gå ut över andra människor. Dina egna argument måste även gälla åt andra hållet. Din inställning till det hela skriker rätt ut att mina barn ska vika åt sidan för att dina barn inte kan hjälpa sig själva. Du liknar mina åsikter vid nazi-tyskland?! Nåja, det fanns inskrivet i lagen under första halvan av 1900-talet att om man orsakade en trafikolycka när man var full skulle det vara en förmildrande omständighet då man inte kunde ta ansvar för sina handlingar under rus. Undrar hur modern din inställning kan vara…”

Med andra ord säger han och andra, att de får existera men på annan plats. Och eftersom svenska samhället inte har någon annan plats för denna så kallade minoritet, än den vanliga svenska skolan, så måste de vanliga normala barnen skyddas och har som majoritet mer rättighet till utbildning, än de handikappade barnen. Jag struntar egentligen i grund och botten vad denne Tony säger, för han visar hur lite han kan om både ADHD och autism och DET är omodernt. De är inga sjukdomar. Och folk kan skrika hur mycket de vill om att det är för många som får diagnoser idag, så att alla diagnoser måste tas med en nypa salt. För oss som sitter i smeten existerar inga feldiagnoser. Vi lever med barn utan bromsar, som uppfyller varenda litet krav på diagnoserna de fått och det är en skymf att höra människor ifrågasätta dem.

Men ja, jag förstår helt och fullt hur en förälder inte uppskattar att dess barn får sig en dänga av sin autistiska klasskamrat eller sand slängd på sig osv. Samtidigt tycker jag att som förälder till fyra handikappade, barn liksom tre normala, att man som förälder inte kan vara enkelriktad. Den attityd som Tony m.fl. framhåller gör deras barn till mina barns framtida eller redan existerande mobbare. Han talar om massan som skall styra och beskyddas. Vem skall skydda de autistiska barnen och dem med ADHD?Fattar ingen att vi föräldrar skriker som vi gör för att våra barn far illa var de än befinner sig? De är andra klassens elever från första början. Jag har inte mött ett enda barn med ADHD, Asperger och Autism som INTE är mobbad. Mobbning är deras vardag. De är inte välkomna någonstans och i förlängningen, inte deras föräldrar heller om de inte vill trotsa alla och tvinga sig på dem med sina barn. Samhället och svenskarna får oss att skämmas för att vi och våra barn existerar och hur har vi mage att kräva något? Och som mobbningsoffer kan jag säga, att det gör inget för självkänslan. Tvärtom. Våra barn med autism osv. utsätts dagligen för så mycket klander att de inget självförtroende har alls. Så kom inte här och tala om att massan är offret.

För alla er som inte ser tecknen, så skall denna omoderna människa som jag anklagats vara, fast jag lever på internet och läser alla de senaste rönen, vilket människor som Tony tydligen är för svenskt intorkade för att göra, så skall jag informera om att 1933 kom ett parti i Tyskland till makten som sa att bara de som kunde tillföra landet något, skulle få lov att leva. Massan var de starka och hade alla rättigheter, de svaga skulle minsann inte dra ner dem. Så T4 programmet instiftades och alla handikappade föstes samman och gasades. Så fanns det bara vackra normala människor kvar. Samtidigt utpekade man naturligtvis alla andra som kunde dra ner samhället i dyng nivå. Judar. Zigenare. Religiösa. Imre Kertész förutspår att vi är på väg dit igen. Se bara på EU-parlamentet. En hel sektion med Nazister, gömda bakom vackra kostymer denna gång, men armbindlarna och hakkkorsen hänger hemma i garderoberna . I Ungern härskar Jobbik på gatorna och det är helt acceptabelt att tala om den kommande utrotningen av judar. Även i Sverige är det helt acceptabelt att tala om Israels utplåning och dess invånare. Som Kertész säger, sedan kommer turen till resten av världens judar och vem tror ärligt att det kommer stoppa där? Vart 48:e barn har autism… Sverige hade sitt eget T4 program. Glöm inte det! I vårt land har folk tvångssteriliserats och lobotimerats långt, LÅNGT in på 1900-talet. Så länge sedan var det minsann inte! Och Sverigedemokraterna går framåt.

Om det är omodernt att titta på historien och titta på de gamla kännetecknen i dagens svenska samhälle, ja då är jag stolt över att vara omodern. Kertész säger att det är politiskt korrekt idag, att stå för det man inte vågade stå för i Europa på 30-talet. Tyvävrr håller jag med. Och det är inte omodernt att lära sig av sina och sina medmänniskors misstag. Inte heller är det omodernt att läsa in sig på handikapp och de former de tar sig.

Autism är ingen sjukdom. Om vi skall kalla det sjukdom så måste vi kalla blindhet, dövhet, att sitta rullstolsbunden, sjukdom också. Det här är inget som kan botas. Precis som man ger en blind en blindskriftsmaskin och böcker med blindskrift att studera i och en döv ett eget språk med tecken och kanske en hörapparat, så måste de autistiska och ADHD barnen, få de hjälpmedel som de behöver. Nu sitter deras största problem i hjärnan med brist på viktiga substanser (autism) eller överproduktion (ADHD) av dem. Vad de behöver är inte att en lärare brutalt skall sätta naglarna i dem eller lyfta dem ur klassrummet med mer eller mindre våld bakom. De behöver lugn och ro, de behöver rutiner som inte bryts, de behöver ett språk som de kan förstå, de behöver en person som hjälper dem med den social biten, som de aldrig kan lösa själva. Deras behov är stort. Men en person som ådragit sig HIV eller som varit med om en trafikolycka, kräver också mycket av samhället. Skillnaden är att ingen nekar de senare det de behöver. Ingen nekar en blind person hund, blindkäpp, blindskriftsmaskin osv. Men det finns inga pengar för alla dessa barn vars diagnoser eskalerat mycket på grund av alla nedskärningar som skett. När det fanns pengar, så var klasserna mindre, det var tyst på lektionerna och varken barn med ADHD eller autism behövde drabbas av att höra ett konstant surrande runt omkring sig, mobiltelefoner som plingar av SMS-signaler, … Vi har i mångt och mycket skapat den oro, som fått dessa barn, speciellt de med ADHD, att inte klara klassrumssituationerna längre.

Det var lätt att få svenska skolan att åka rutschkana utför. Men det är inte lika lätt verkar det som, att få den på rätt kurs igen. Ovanstående Tony talar om resurser till barnen som behöver hjälp så att hans son kan få ha sin lärare ifred. Nu är det så, att de skolor som gör sig omaket att skicka in ett lass med papper, som dokumenterar ett barns behov av assistent, får ofta avslag. Det finns bara så mycket pengar att portionera ut och pengarna motsvarar inte nivån på behovet. När inga pengar ges, har skolan “att välja mellan iPads till en klass med normala barn eller att pengarna skall gå till hjälp åt ett barn”. Gissa vad kommunen väljer Tony Arvidsson och Expressen? Massan är ju viktigast. Eller som rektorn för vårt upptagningsområde sa till mig “Min skola är för normala barn!” Så jag valde en annan skola som inte heller hade några pengar. De hade ingen lust att söka tilläggspengar eftersom de tar för givet att de inga skulle få, eftersom de är friskola. Och där finns inga pengar att avsätta till fortbildning. Inga pengar att be om utbildning från skolornas resurscentrum, inga pengar att skaffa in DVD-filmer eller böcker från Attention och Asperger & Autism Förbundet, så att lärare kan förse sig själva med kunskap. Inga pengar att gå på de föreläsningar dessa förbund ger eller de som de få autisiska friskolorna ger.

Men det finns faktiskt ingen ursäkt för att vara omodern i dagens Sverige, som nu denna Tony anklagade mig för att vara. Kan utbildningen börja i de lägre lagren, bland befolkningen, så kan vi sedan skriva makthavare, skolmyndigheter och press på näsan! Vi är ett av de mest uppkopplade länder som finns, all information finns där ute på nätet. Det är bara att ställa er på surfbrädan och välja och vraka bland alla de artiklar som ligger uppe om både ADHD och Austism. Det finns en uppsjö av böcker och fortbildning att tillgå för privatpersoner. Att sitta och klappa sig själv på ryggen och säga att allt för många diagnoser ges i Sverige och att det egentligen är föräldrarna som brister eller att se om sitt eget hus och bara bry sig om massans normala barn, det stinker! Det finns en anledning till att varje barn i Sverige med diagnos har fått den diagnos de fått. Skolan har krävt testning. Förskolan har krävt det. Föräldrarna har märkt att det här barnet inte är som alla andra barn. Tillsammans har man krävt att få svar på varför. Men det är efter detta som vägarna skiljs åt. Föräldrarna har fått svar på varför deras barn agerar som det gör men skolan har inte pengar att göra något åt det hela. De råd de får på BUP och/eller på habiliteringen går in i ett öra och ut genom det andra på grund av bristen på pengar. Och ovanstående instanser informerar alltid föräldrarna med att “vi kan inte tvinga skolan att göra som vi säger, vi kan bara ge råd”. Det finns en orsak att Sverige är sämst i Europa på att ge neuropsykiatriskt handikappade barn den hjälp de behöver och i förlängningen betyder det att lärarna inte mäktar med. Det Expressen, är vad ni skulle ha skrivit om! Inte att lärarna skall ta ut sin frustration på de svaga, de som bara ropar med sitt agerande, att det är något stort fel på systemet!


Något för Sverige att vara stolta över. Vi är bäst i Europa på att vara sämst. Vad säger ni på Expressens redaktion om det?

Något för Sverige att vara stolta över. Vi är bäst i Europa på att vara sämst. Vad säger ni på Expressens redaktion om det?


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The concept of My Friday book…

imageWhen I had reached the age when you devour books, there was no stopping my reading. The best thing I knew, was to take my bicycle and head to the library. It did not matter that I had to pass houses where the bullies lived and bike over the little square, which had the entrance to the library on one side of it, where the bullies always hung out, never being home doing homework. I had my escape routes. I would cycle twice the distance on those, to avoid as many people as possible. Just to reach my goal. The lovely library with shelves of treasures. I would stock up on ten-fifteen books at a time. And of course I had no problems finishing them. The summers were the best, since it meant read, read, read every day.

All my pocket-money also went to books. My mum hated it. And she was so upset when I would send money with her to town, to buy me a really thick “Nancy Drew” book and me finishing it in one or two hours. I can easily say that I have been a book-lover from the time I learned to read. I love to hold a book in my hands, I love the anticipation one has when opening the book for the first time, wondering what it will really offer. What sort of adventure will it take you on? And there is nothing worse than reading the final lines, putting the book down and feeling “what now”? The emptiness which settles in, before starting a new book, is mighty depressing.

When I got up to middle school, there was a specific highlight of the week. Friday day was assigned to us, to every class, to head toimage the school library. We would walk off class after class, instructed that we were only allowed to borrow one book each. There was always fierce competition for the Narnia books by C.S. Lewis. So, to this day, I have not read the books, because I do not fight over books! (I have actually read the first two books aloud to my children, but they never caught on to the magic and all the Christian symbolism bearing testimony of Lewis’ faith.) I could find plenty to read in that room and was not going to walk home disappointed with not getting one of the Narnia books. Later on my classmates moved on to books about teenage romance and so on, which was not a pattern I chose to follow either.

No, I was happy with other books and after making my selection, I would head back to the classroom and eagerly await the end of the school day. I would head home, crawl up in an armchair and READ. Till the book was finished! Usually by the time my mum got home from work. And then I had a long weekend in front of me, without a book. SAD!

For some reason, in the last year, I have started to follow my old pattern. To start reading a book on Friday afternoons. It is the highlight of my week actually. When I arrive home with “Boo” and “Gubby”, knowing that I do not have to go out again that day. That the week is finally over and I will have two days to rest and relax, if you count going to church as relaxation. Not really in my case, but it does mean not having to drive back and forth like a taxi driver not being allowed to come late to fetch or drop off a child.

imageNo, it has become my routine, when I get home with the boys, at around 14:30, to take my jeans off, put on leggings, thick wool socks, grab the book I feel for reading at that point in my life, cuddle up in my torn armchair with my Union Jack blanket wrapped around me, and just read. The boys having the TV on in the background. If the book is good, I will not watch TV at all that evening but just proceed with my book. Many books are finished that same night or in the early morning hours. Others take longer of course. So, the blog posts get written on a somewhat uneven basis, depending on how long it took to read the book, how long it took to digest what I just read, and how much I really want to say about it. I have been working on a post about Pétain for a month now. Filling in all the gaps the book left out, still trying to come to terms with what I read in that book, which was an eye-opener all right.

So to all who read my Friday Book discussions, do not loose patience, if they do not come regularly. And may you have as fun reading them, as I have writing them. And one more thing: Why not try a Friday book yourself? Fridays are excellent days to start a book, the best as a matter of fact! Who cares about TV? Nothing can compete with a good book!


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My Friday Book: An unwanted Jew in Hungary or “From Budapest to Berlin”

In 2002, Hungarian author Imre Kertész, won the Nobel prize in literature. It was nothing earth shattering about it. Not too much was said and I who usually take a great interest in who wins and check out if it would be an author whom I would be interested in reading, took no such action that year. I started thinking about why that was, and just discovered that right around that time of the year, in 2002, my husband was told by the health clinic that the spot they had removed from his back, was malignant melanoma. I had more important things to concern myself with, than a Nobel prize winner’s books.

Most Nobel prize winners disappear in to oblivion again, after they have received their prize. Why? Because they were never that much read in the first place. Usually they were only read by a few before the prize, then there is an upswing for a couple of months, when everyone want to know why the person won it in the first place, and then it is only the select few that continue following the winner’s publications, because let’s face it, the books and authorships are often weird. I can not say that I have been impressed with Modiano’s books, who won the prize in 2014. The one author whom I have loved since he won the prize though, is the now deceased Isaac B. Singer. THAT was my kind of author! A true storyteller, who brings you to the streets of Poland, in pre-war Eastern Europe. The smells and the culture is all there in his books, you see the pictures he paints for you!

I can not really say a thing about Imre Kertész. I guess his big seller book is “Fateless”, which later translators in Sweden, have translated in to “The Man without a Destiny”. It is supposedly a very good book and has been filmed, Kertész himself having written the script for it. But it is not a Holocaust book which I have ever heard of before. And after reading his diary, I wonder if it would be worth it?

Kertész has always kept a diary and the book I have just finished, which was a later buy at the yearly booksale, when it was basically over, covers his thoughts and diary from 18 March 2001 to 18 October 2003. And what can I really say about it? It does not seem like UK or US publishers have bothered translating it and perhaps they never will. At least not until after Kertész death, when it might suddenly become interesting to people. Artists often not being appreciated when they are alive. If I should rate the book, I would rate it three stars which is not really fair when you talk about a diary, is it? But so much in the book went way above my head, for the simple reason, that I could not follow along with his reasoning.

That is the problem with a diary isn’t it? WHO do we write it for? Ourselves? To be published? I think that Kertész wrote the diary to be published one day. But at the same time, he did not write it for just anyone. The only persons this diary is really interesting to, are people who have associated with him. Who have been part of his world, have been part of the discussions, read the news, have followed his career and most of all have read the books he has written. He is not full of himself, that would be wrong to say, but he has a real attitude problem when it comes to readers. He doesn’t want to please them at all. He writes for his own sake and that will shut out a lot of potential readers, because at least in this book, you sit clueless a lot of the time.

A diary is not supposed to be a laundry list. That is what I was told when I studied history at the university. Those diaries tell us nothing, 200 years later. What we want out of a diary, is meat on the flesh. What did they think, how did they feel about things, how did they act… I don’t know. When I write a diary, or a blog post, I do write a summary of what it is that has happened and how I feel about it. In classic Mass Observation style. If you do not tell your readers or your descendents what has happened, your thoughts about it will be pointless, because they will have no idea what you are talking about. And that is what it is like to read Imre Kertész’ diary. Things have happened and he is upset, but you have no idea what has happened, what it is that he has read or seen on TV, so his comments make no sense.

Resembles a Nürnberg rally, doesn't it?

Resembles a Nürnberg rally, doesn’t it?

Why did I buy this book? Because I have read a lot about Jobbik, the fascist party in Hungary, who wants to kill off all Jews and Gypsies. They are not hiding their thoughts, they have power and even sit in the EU parliament. Hungary can easily be looked upon as the most anti-semitical country in Europe and the country which is ready to do something about their Jewish problem, Hungarians over-estimating how many Jews actually live within their borders. The reason why Kertész has published this particular part of his diaries, is the fact that during the time it covers, he does take the decision to leave Hungary for Berlin and Germany. Why?Because of anti-Semitism. Or so says the backside of the book. When you read his diary, you get another view, that he left because he was not appreciated in his own country and felt less and less at home there, thanks to it. Which of course can be rooted in that the Hungarian society clearly shows the Jews, that they do not belong there. Which makes a Jewish Hungarian author out-of-place of course. When the entire world praised his literature, Hungary remained silent. When Holocaust literature is mentioned in Hungary, they never mention him and his books. That truly hurts him which is something which comes through in the diary. Especially since he has no other language to write in, than Hungarian.

It might sound like I hated the book, but I did not. It is actually a very tragic book. Kertész started out this diary battling with a computer. He no longer could write by hand, because of Parkinson’s. By the end of the book, the Parkinson’s had started to spread all over his body and a lot of his diary entries were about how depressing it is to get old. To have the same feelings and urges still, but the body not functioning the way it should. His thoughts were often suicidal. Especially after it was found out that his wife had cancer. He abandoned his suicide plans when he realized that he had to be there for his wife and help her struggle through surgery and chemotherapy.

He also struggled really hard with his novel. A book he worked on for 13 years, before he was content with the outcome. The way he described that book, I doubt that it is a book for me. It seems too philosophical and weird. But when he writes a novel, he might actually write in another manner? That is what I felt throughout the diary, that perhaps one should not read someone’s diary, unless one has read the person’s literature first? So one knows what one is dealing with? Because I do not know why people would be upset with him, about the way he portrays the Holocaust, nor why his books have offended some? Especially Jews! What is it that he writes which is so offensive?

One does realize in this book that he has problems with being Jewish. It seems like he doesn’t really know what it means or he has no connection with it at all. In the second entry in his diary, from 19 March 2001, he says and perhaps he means himself as well: “The European Jew is defined by others, as of a different human type. He is no longer able to generate any kind of intimate relationship with his forced Jewish state. He can still function as a practising Jew, but then the legitimate question will always arise: Why is he not orthodox? And what does ‘Next year in Jerusalem’ mean, when Jerusalem exists in reality already and that is where the Jews live.” To be assimilated or take a stand point and be different. That must be the big question for every Jew in the world, who has not chosen to live in Israel. And for those who are assimilated and have no connection to Judaism what so ever, it must feel more or less like an insult, when others label them as Jews. Is that a correct interpretation, Kertész? The worse enemies, some days, are Jews themselves, according to Kértesz. Because no Jew defines himself in the same way, it seems. Only the anti-Semites do that, according to Kertész (17 April 2002).

One can feel a bitterness of course, in Kertész. He says some weeks later, that he is part “of a minority which has always been persecuted and reviled, then sentenced to death in 1944 and this sentence has not been revoked to this day.” He can not feel any togetherness with the Hungarian ideology or its mind. Which is dangerous for a Jew, because it does reinforce the anti-Semites prejudices, that “the Jew doesn’t care about the Hungarian”. The Jews always having been accused for not being solidaric with the country they live in and with its people. That they always have their own agenda, a foreign element in the body. Kertész has a very difficult  time accepting that the  Hungarian nation base its national and historical conscience on passions, romanticism, sentimentality and subjective stinginess instead of on sense and reason. Very Nazi isn’t it? Typical fascist way of looking at one’s country. No factual background at all. So I agree with him.

During this time, Kertész is wrecking his brain, trying to decide whether to leave Budapest or not. He wants to move to Berlin,image away from his country’s growing anti-Semitism. On the 24 April 2001 he has read some writing by a Catholic, who can’t understand why his church will not accept the gypsies. Kertész is surprised that the author doesn’t know his own church’s history. “Do you not know the chain of repentances, exclusions, persecutions, physical and abstract inquisitions, which led to the extermination of the European Jewry? Is it unknown to you that each stage in this process, all its laws and regulations, from the star of David to the institutionalised social exclusion and isolation (ghetto is the name, dear friend), was taken over totally by the Nazis from the Catholic church, their “only” innovation being (instead of the burning on the stake and pogroms) the gas chamber in Auschwitz? Are you unaware of that the bishops of your church having voted for the Jewish laws in the Hungarian parliament?”

Kertész has nothing left over for religion at all, actually. Perhaps it is difficult to feel anything after seeing the horrors in Auschwitz and Buchenwald? I can’t agree with him in his statement that faith’s official, institutional and church forms, have been emptied of their content. For some religions, yes, I agree, but when he says that this is true for all religions and churches, then I must object. I sat and watched my own church’s general conference a week ago when inspired men and women gave talks, full of faith and hope, teachings of the Saviour and there is nothing hollow in their messages. They truly believe in what they say and we know what they say is true. Sure, all religions have culture and traditions, that could go through an inspection now and then. By all means, get rid of some of them, which have nothing to do with the religion per se, or should I say faith and doctrine, the gospel in itself. Traditions will uphold religion in many cases but on the other hand, it can make people shy away from the doctrine itself.  Them thinking that the tradition is more important than the doctrine. It is important to not pass a judgment like Kertész’s. Look at the religion, not its traditions. In our church we always say, the gospel is true and perfect, but the people are not. You can’t look at a religion and decide it is not true, just because the followers are not perfect! And if one does not believe in God at all, one can not be a judge over religion, because one doesn’t have a clue as to what one is talking about!

On the 15 May 2001, he declares that very few people live in a country out of conviction. Except perhaps in Israel, because a lot of Israelis actually live there out of conviction. But people in Hungary, live in Hungary because they happened to be born there by coincidence. He looks at where he really should be living and draws the conclusion that he has the strongest cultural ties with Germany since they are his audience and his publishers are located there as well. But he feels that he can only feel solidarity with one people and nation, and this being Israel, but the tie is altogether emotional. For Hungary he feels no love or solidarity at all, the language being the only thing that ties him to that country. He says that it is making him ill to live there because it has a false value system and unacceptable morals. One wishes that he would have expanded on things. What is really going on in Hungary? What kind of value system and morals? He doesn’t go in to the background ever, of all his feelings. And I really do not want to sit down and study Hungarian history over the past 70 years, trying to decipher what it is he objects to so much, except for the anti-Semitism.

I must say that Kertész’s diary entries differ very much from my own. I do not usually write particularly short ones. But his are often just a couple of sentences long. One interesting one is about Hitler and that he was a historical anomaly. That his entire way of thinking was passé, a product of outdated thoughts from the 1800s. “But what he accomplished, Auschwitz, is as modern as it gets.”

In a longer entry, he contemplates the disappearance of the history of the Eastern European people and that nationalism imagehas taken its place. And that a great nation or person, can not come in to being unless they have confessed to murder and that they have come to the realisation of the loss that they have caused. Days after writing that, he writes about Poland and how the Polish do not understand why the Polish Jews can forgive the Russians and Germans, for what they did to them, but not forgive the Poles. He brings up Jedwabne. Exactly. How can the Poles think that they can forgive such a thing. It is easier to forgive other people coming in and killing your people, but to be killed by one’s own country men? That is too much. I have bought the book on Jedwabne, which tells the horrifying story of how the Poles staged their own murder of Jews, in the town of Jedwabne in 1941. I haven’t read it yet, since I suspect a harrowing read. It was the town’s people, who forced their neighbours in to a barn and set it on fire and then blamed the Nazis. (English readers will be able to read it from 15 September 2015.)

In August 2001 he had reached the decision to start his move to Berlin. A move that actually turned in to going back and forth to Budapest, but maybe they finally have cut with Hungary today? He claims in August that year that he has lived for 72 years hiding who he is, living in a hostile country, a hostile environment: “They hate you because you are Jewish, they hate you because you are happy, they hate you because you are appreciated elsewhere – they hate you because you exist.” But not only is he convinced that the Hungarians hate Jews, the Hungarian Jews even hate him. Why? That is what the diary does not explain.

6 August 2002, he is once again on the topic of the Holocaust, which seems to never really leave his mind. Someone on TV has claimed that the Holocaust is incomprehensible. “Why incomprehensible? It is very simple. A monomaniac fanatic ceases power, the real men of power and money realise, right away, the possibilities in this man and his ideas, the mob gets to live out its real inclinations – the hatred, the murderous sadism, the servility, the false heroism, and most of all, it is allowed to steal everything left behind for it. And why have they chosen the Jews for their purpose? Because they were the most appropriate, the easiest targets, not the least since the church’s 2000 year hate propaganda had developed all models, for the loosened murder instincts. (Raul Hilberg has shown that the only thing that the Nazis added to the Catholic Church’s praxis, was the final solution technique: Auschwitz.) What is incomprehensible with this?” “The word ‘incomprehensible’ belongs to the pre-Auschwitz language. Before Auschwitz, it really was incomprhensible, but during and after Auschwitz, it was natural.” Creepy thought! But is it not true what he says? Having studied anti-Semitism through the centuries, like I have, and Jewish history, it is true. The worse culprit in history, before the Nazis came along, was indeed the Catholic Church, which is supposedly following the gospel of Jesus Christ. But they have totally misunderstood his message, his sermon on the Mount, and moreover cut away everything inconvenient for their purposes, from the Bible.  And what is worse, parts of the Catholic church still reinforces the old insane accusations, in its places, keeping the anti-Semitism alive and thriving. Especially so in Eastern Europe.

On the 2 October 2001, he has been watching TV and an American woman claimed in the program, that everyone blame the Jews and Israel for the Twin Tower attacks in New York. Interesting how Hungarian news got hold of someone who would say, what the fascists in Hungary wanted to hear. Noone claimed such a thing on Swedish news, thank heavens.


He moves on with what I think is his own monologue and not her anti-Semitism. He asks himself how it is possible that the Jews have not been exterminated by now. And what if people succeed, what will happen when they realize that the absence of Jews in the world lead to nothing, no relief at all? Interesting thought! What make people think that it would be such a better place without them? People will just pick a new scapegoat, that goes without saying! The next day he watches a documentary about birds and realizes that smaller birds in the Galapagos, live on the blood of bigger birds. That God did not implant an idea of solidarity in birds. That they do not even have the sense to protect their own interests. He of course draws parallels to Auschwitz. The poor man just can not stop thinking about the Holocaust on almost a daily basis.

When he takes a tram on the 12 October 2001, he starts thinking about pogroms, how people call you names and shove you about, but they will not start to physically attack you until you are on the ground. He doesn’t like to think about it, but the human instinct is to reach out to a person on the ground and give them a helping hand, so they can get up. But we don’t really do that anymore according to Kertész. Humanity has sunk to a level of animal behaviour, which must mean that the world is coming to an end. I can’t say that I disagree with him. Yesterday, I fetched my autistic son at school and he arrived to the car having a total meltdown. A two year older boy had boxed him in the back of his head and in the face. “Boo” was hysterical and I waited to find out what had happened till we got home. The boy had THOUGHT that “Boo” was going to steal his glasses off his nose, when “Boo” accidentally had knocked off his hat (they were practising for a play about a circus). The 11 year-old boy attacks an autistic 8-year-old, who is clumsy, because he has problems with his motor skills. I want to cry. There is no humanity anymore! Kertész decided to escape Hungary’s hate by moving to Germany and I have decided to move my son to another school!

Kertész and his wife arrive in their new flat, 18 January 2002. The day before he was informed that the Jews were going to demonstrate in Budapest, because they are being deprived of their rights, because of the anti-Semitism and it being sanctioned by the government. But the government could not allow the Jews to get the limelight like that, so they decided to counter the demonstration, by getting all the attention themselves. They decided to have an official memorial service for the liberation of the ghetto. Kertész said “they stole the demonstration”. The Hungarian Final solution not having changed a bit since 1944, according to Kertész.

His move is not final for some reason. He and his cancer sick wife travelled back and forth between Berlin and Budapest for years. Her getting chemo therapy of course but also working there. 1 March 2002 Kertész feels sick in the underground, when he sees all the propaganda posters for the Arrow Cross party, feeling that he is back in 1938 again. Three weeks later he discusses a conversation he has had on the airplane, with a German student who can not understand how all students in the world are left-wing except in Budapest, where they are Nazis. This is why I bought this book. Trying to understand why Hungary of all places, have chosen this route. AGAIN! But Kertész is as bewildered as I am and has no answers. He is convinced that the Jews will be exterminated this time, with the help of all Europeans. It rather looks that way, doesn’t it? Anti-Semitism being all over and the first and foremost target being Israel. 3 April 2002, he and his wife have been invited to Israel for some reason, which he doesn’t disclose. But they can’t decided whether to go or not. Feeling like cowards if they say no and realizing that they could be blown up by a bomb at any moment, if they go.

On the 5th April he was still undecided. Looking at the suicide bombers as just bitter people and that their acts have nothing to do with nationalism and wanting a state of their own. Their families being paid $25 000 for the inconvenience. He wonders how anti-Israel demonstrations can take place in Argentine, how that can make any sense, but he answers his own question by saying that 2000 years of hostility against the Jews has frozen the image of the Jews and the hatred against them, for refusing to vanish from the surface of Earth. So it is not strange at all that Anti-Israel demonstrations and hatred take place all over the world. No other picture is presented as acceptable is it??

Kertész travels around all over Europe giving lectures and in Copenhagen he sadly makes the reflection that during the liberal days, Denmark let too many foreigners in and now they can’t handle it, so the right-wing has to sort out the chaos and they do that by diminishing the democracy. And this is taking place all over Europe. Well, 13 years later, the right-wing parties are powerful in all countries. And noone dares to take up the fight against them. Twitter ridicule of them is not enough! In Denmark he meets a Polish Jewess who survived the Holocaust as a child, by being hidden by Poles. But in 1967, she was thrown out of Poland because she was Jewish and considered of “a foreign heart” and having “double loyalties”. In 2002, she no longer felt safe anywhere in Europe.

1 May 2002, Kertész reflects over that this time around, he gets to see how quickly it takes for a scapegoat to be created, begging the reader to take anti-Semitism for serious. What he says is important and I underlined it all in my book: ” Israel is pointed out as the cause for the terror attacks in New York. The Jews are the cause of Israel existing in the first place. The Jews are creating an Auschwitz for the arabs. Palestine-friendly demonstrations take place all over Europe. Their message is just one: Israel must disappear from the face of the Earth.” But it doesn’t end there, because the international Jews turn against Israel in anger, since they are afraid and want to escape the hatred turned against the Jews as a whole. They are recognised as the Kapos of today. He is

Where is the solidarity with their own people, you could ask?

Where is the solidarity with their own people, you could ask?

convinced that the Jews will be exterminated and he just wonders how it will take place. “I feel that a world war is on the horizon, even if we don’t know who will fight it yet and who the two main enemies will be.” Once again people indulge in collective hateful drunkenness. And he ends the entry by saying that the one thing which has plagued him the most about Auschwitz, is the covered up lie, that people care what happened there. “Now when Europe openly vote for the extermination of Israel, for the extermination of the Jews, in other words for Auschwitz and all it stands for, the air has got more clear.” People in Sweden will  never admit to it. The news people in Sweden will pretend they do not understand. But it is the truth, isn’t it? Auschwitz means nothing anymore and for many, the horror they have displayed at hearing about it and seeing evidence of it, have just been pretence, because it was what was politically correct at the time. Now the politically correct thing is to live out your anti-Semitism. Swedes don’t care a straw about Muslims or the Palestinian state! But the old ingrained anti-Semitism has been given a righteous cause. And this does not just go for Sweden, but for all countries. Especially Hungary.

I feel sorry for Kertész when he the 18 May 2002 says to his wife that he has never lived in peace before. In Berlin he finally has received the feeling of living in a country which has peace. In Hungary it was one occupation after the next and in 2002, the streets were still boiling of hatred and “warlike circumstances”. Holland not being much better, since when he writes his entry, the Dutch has elected their own right-wing party. Kertész claims that he always knew that the third generation would adopt Nazism again, hate everything and be fed up with talking about Auschwitz. Now the West can finally approve of the Final Solution and stealing. “They are starved like pets who have not been fed”, just waiting for a leader to step forward.

6 June 2002 he is back in Berlin and wonders why anti-Semitism has not been discussed since Auschwitz. He really fears that Europe’s hatred for Israel will exterminate it and he dreads having to watch it. And of course when Israel is gone, the turn will come to the rest of all the world’s Jews. A month later he says “The new murderers’ anti-Semitic argument: ‘To criticize Israel is not anti-Semitism’ “. How can it not be anti-Semitism? It is not the country which is criticized but the people in it, the Jews. The Jews who are finally  taking up defence weapons and saying that they no longer accept to be the victims of humanity. Kertész is appalled by how the European Jew doesn’t come to his Israeli brother’s defence, but instead hates as much as everybody else. Kertész has a theory that the European Jew is so bewildered, that he actually will not be satisfied till he is exterminated himself, that it is the only solution for his weird life. “He will not give up till he has reached his purpose, before he has been beaten, robbed, sent off to a new Auschwitz, before has been forced to dig his own grave, and everything leading up to this event, will amaze him, just like it did the last time. ” What we see, according to Kertész, and I fully agree, is how the Jews in Israel and the ones in the Diaspora, are heading in different directions.

On the 19 September 2002, Kertész is back in Budapest, and I just have to mention parts of the entry where he mentions the restaurant owner Szunyoghi, who has just put up a sign outside saying “Jews and Dogs not allowed to enter”. His most valued customer, Grün, who has been eating at the restaurant for 20 years, asks him “Do you hate me that much?”. The owner says no, of course not. “So you do not mind that I am Jewish?”. -Oh, you are Jewish? Then I must hate you! “Must you or do you really hate me?” -Oh, if I only knew how to differentiate those two! Says it all, doesn’t it?

26 October 2002, he knows that he has won the Nobel prize in literature. The Nazis in Hungary are insulting him and for some reason his fellow Jews in Hungary do not feel that the prize should have been given to him. In a way he is not happy about the prize at all, because it unleashed terrible meanness in  Hungary, the Nazis attacking the Jews and Jews attacking Jews. And there one always think that the Nobel prize brings happiness to the winner! Gymnasium students in the town of Hódmezövásárhely were all given a copy of “Fateless” as a gift and they answered by ripping them to shreds since it is “Jew literature”. How sad is that? For an author to have to find out that his books have met with such a fate. As bad as a book burning.

He is horrified at how his Nobel prize is received in Hungary and on the 5 March 2003, he complains that no matter how his friends try to tell him that it is only a small jealous minority feeling that way, the right-wing intellectuals, Kertész points out that “my senses and my intellect would not be healthy, if I did not recognise the insults, as the race hatred for which they are, the perverse and unreasonable fury against those with ‘a strange smell’, against those ‘with a foreign heart’, which they all agree with like parrots.”

22 July 2003, the war in Irak has reaped consequences. It has changed the political consensus in Germany and the bottled up anti-American feelings have been unleashed. People also claim that criticism against Israel is not anti-Semitism. This becoming the starting signal for a new anti-Jewish persecution campaign, with equally threatening perspectives as earlier persecutions. At the same time, the Austrian television wants him to come and talk about block 8, which was the children’s block in Buchenwald. On the 18 October, he has finally decided to not do the interview after all. He has come to the decision that by his authorship, he has stood as a witness for what happened. Through his books, he has been able to get closure and deal with the trauma, getting through Buchenwald and liberating himself from it. In his books, he has resurrected Buchenwald, but as an abstract form, as fiction, which is the only way he can deal with the experience. If she wants to force him to sit in the interview and act as a real witness, like the ex-victim which he is, it will force him to relive those experiences, which he has put behind him, it would force him to go back to Buchenwald and he feels that noone has the right to make him put himself through that psychological torment again.

This is how the book ends. It is strange that he can only deal with his Holocaust experiences through fictional writing. Because it is clear through his two year diary, that it is always on his mind. He has not been able to leave it behind no matter what he thinks. And the neo-Nazis are not going to let him forget either. In everything that happens today, he sees a repetition of what went on during the 1930s and the war. His testimony would carry weight, since so few of the survivors are still alive. People like him has to scream louder and teach the world, that we are heading the same way as in 1933! The anti-Semitism is everywhere and countries like Hungary are going to do something about it, right under our noses, with the blessing of the EU parliament. How can this be allowed in Europe today, in EU?

Europe's modern Nazis. Did we learn nothing last time?

Europe’s modern Nazis. Did we learn nothing last time?

Here we go again!

Here we go again!


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My Friday book: “Ten Things Every Child with Autism Wishes You Knew” … continued

WordPress functions poorly when your posts get too long, so I decided to split my post in to two parts, this being the second of the two. So for newcomers, please go to the first post, before proceeding with this one. It might explain a lot and the five first things we need to know, are too important to miss.

The 6th thing you need to know is that autistic and children with ADHD, are visual people, not auditory at all. Most of us are helped by visual aids. How many of you are not the owners of a diary? Alright, maybe I am one of the few, while everyone else use their mobile phones. But even that will be counted as a visual aid, since you LOOK at it. Myself, I have somewhat of a photographic memory, so I have no idea what it is like to be an auditory person. I am not going to say that I can hear something and then forget it right away, because it was not written for me to see. Yes, I can remember what I have heard, but it can feel overwhelming, if I am in a lecture and want to remember big parts of what has been presented there. For me, there is no better tool than pen and paper. I take notes and thereby write things in to my memory. I highlight things in books, which makes me remember what it said and it helps my memory, so that I later can tell someone that it was at the bottom of a right page or whatever. To listen to a book on CD is not at all my thing, because my mind wanders. But with a book in my hand, I will make mental pictures of everything I read. So, for me it is easy to understand why autistic people have an easier time with visual things.

Notbohm proclaims that some autistic children think of life in pictures, not in words at all. Then you need to present everything to them in pictures, don’t you. As a matter of fact, all children with autism and ADHD benefit from getting everything presented to them in pictures. A schedule should contain pictures even if they can read. They need these pictures to create security, for one. So they know what will happen next. But also because they lack all sense of time. It does create a sense of order too. When it comes to things going wrong, pictures can also help. With the help of the pictures, one can explain what went wrong and why. And also teach the child what to do instead. The special ed teacher who tested my youngest son “Gubby” for autism, told the pre-school personnel that they needed to do this for when he has his meltdowns and aggressive reactions. We stared at her, all of us, because “Gubby” has no meltdowns nor aggressive behaviour. Not a whole lot of things become him. But his reaction to things is not common for autistic children. This behaviour I see in his older brother “Boo”, who basically IS going through those things on a daily basis. HE needs picture stories. Too bad that the school doesn’t understand this.

Notbohm does go through why it is so important with the picture schedules and as I said above, it creates structure. Why does the child need so much structure? Because all autistic children worry. They worry about the smallest things. They do not like surprises, nor unpredictability. They want to de-scarify the world around them and the best way to do this is to be prepared for what is about to happen. When they know what is to happen next, they can concentrate 100% on what to do now.

Autistic children also like routines, whether they are pictured on a schedule or not. My youngest son wants everything in the same order, every day. And his brother who goes to school, would probably benefit from as little changes as possible. When there is a new thing introduced in the schedule, like going to the public swimming pool, going off to the sports arena, to the library, to a play, he flips out. He can not cope at all and what happens is, that he runs off and does his own thing. He no longer feels safe and doesn’t know how to behave or feel in control anymore.

To have a picture schedule also helps a child to see that there is an end to boring things and that funnier things lay ahead. When my youngest son (who is now being tested by the habilitation speech therapist), goes to the tests, she has put up pictures of everything they will do. First look at pictures, then talk about words, then there is a picture of the play room, which he loves. Monday, he sat and held the picture of the playroom in his hand during the test. Because first of all, she had forgotten to put velcro under it, like with the other pictures, which upset him. Order is important. Secondly, because he could hardly wait to be allowed to go in there.

With a schedule, the child can also become independent. He can look at the schedule and knows what to do next, which is good. My oldest son Johannes was never diagnosed with autism, because noone told us to go and have testing done. One did not in those days. Instead he was labeled as stupid, having learning difficulties, being lazy, being awkward, doing socially unacceptable things, lacking motor skills… One thing which became clear when he started high school, at the age of 12, was that the schools ideas of working in steps, did not suit him. One worked with a subject in seven steps, if I remember right, and one had to choose which level of grade one wanted to aim for. In his case he always had to aim for the lowest, since everything else was beyond him. But the major problem was that the teacher would explain to him what he had to do to complete a step, and then he did nothing. He just sat there and did not get started since he had not understood a single word. He could not sort out the information, even in written form. The steps required to pass a course were seven, but finally the teachers understood that in order for him to pass a single step, they had to break each of the seven steps in to tons of little steps. When the others got three to six weeks to finish the seven steps, he got 12-18 weeks. It is a miracle that he was able to graduate and had I not done a lot of his homework in gymnasium, he would not have graduated from there at all. I don’t think that I will ever understand how his brain worked or works, but he certainly can not put a schedule together himself, nor put his words in to anything comprehensive on paper, so he might be one of those people who clearly thinks in pictures and not at all in words. And his schooling ought to have been in pictures then.

Number seven on the list of things, is the fact that we must focus on what our child can do, not on what he can not do. Easier said than done. In school, there are certain things a child just has to learn. Johannes sat the entire first school year and just glued and cut paper. He was not interested what so ever, in learning anything, especially learning how to read and write. His brother “Boo” never learned to read in first grade either. Now he is in second grade and the goal is for him to catch up on everything he missed in first grade, including the skill of reading. I agree, you don’t have to point out everything your child can not do, and yes, you should build on what they already can do, improve on it and encourage it. But at the same time, we all have to learn new things in life, every day almost, and that goes for autistic children as well. The goal is for them to learn as much as possible, so that perhaps one day, they can actually live a life on their own.

Our Knowledge channel (Kunskapskanalen) on TV showed this documentary a couple of days ago, called “Living with Autism”. One of the things which touched me the most, was at the end of the program, which I have seen twice, trying to catch the first 20 minutes of it and failing both times. They showed an old black and white film of this really cute little boy. Inquisitive, talking to the interviewer, not really coming off as autistic at a first glance. The program producer was a psychologist named Uta and she was the one who interviewed the boy, all those years ago, and it had started her interest in autism. After the black and white sequence was shown, they visited the now greying man and I was shocked. The little boy who spoke pretty normal and looked pretty normal, no longer seems normal at all. He is a pudgy old man who can not look after himself. He looks off in space, avoids eye contact, he repeats everything people say to him, like a parrot, clearly acts retarded and looks that way too. What happened between the little boy and this elderly man? It looked like he was on the right track back then but somewhere, something must have gone wrong. The question is what? Did he not get the encouragement he needed? Did he not get love, attention, training…?

The book I read said that we are all needed in this world with all our personalities and different skills. That there is no reason to grieve that your child will not be able to do this or that. Fine, if the child does not have any ambitions. But if my little “Gubby” will turn in to a man like I saw on that documentary, it is time to weep and pull my hair. That man has gone in to his bubble and can not get out. And what if the child does have ambitions? “Boo” talks of when he is going to get married. He is 8 by the way. And now when D. is doing his basic training with the military, it has given “Kitty” and “Boo” new dreams. They also want to wear a uniform, shoot a gun and live in a tent! And how can I tell them that with an autism diagnosis, you are not allowed to become a soldier nor a policeman. “Kitty” so far has only an ADHD diagnosis but he will be tested for autism and I fear, that what goes for autism in the military goes for ADHD as well. Some doors are already closed to my boys and how do you explain that to your child, at the same time as you have to make them feel good about themselves and tell them that they are not ill, they are just different.

When I go to habilitation they look at me and wonder if I can really cope. Should they report me to social services? Can one woman really deal with taking care of three handicapped boys and at the same time give the three normal children what they need? I became really angry with the counselor at BUP some months ago, when she suggested that I can not cope when I tell her that I feel stressed out about all the visits I have to do at BUP and habilitation. My answer to her was this: “I came here for help, but all you have created in my life, is stress. You hand me appointments which clash with my children’s schooling, fetching times and other appointments. Some weeks I have to be here every single day and I have to bring children, who would be better off at home or elsewhere and you demand that they wait outside by themselves in the hallway, while the sibling and I, go in to see who ever we are here to see. How can I not feel stressed out at leaving one or two autistic boys on their own, out in the hallway for an hour, because of your bad planning? What parent would not feel stressed out about this constant logistic mess? And I do not come here to tell you everything that works in my life, do I? You go to BUP and habilitation to tell everything which does not work. What would be the point of going here to tell you that everything works just fine?”.

BUP, Habilitation and Försäkringskassan, where you apply for care support, do not want to hear anything about what your child can do, but you are supposed to tell them about everything the child can not do. In your daily life, yes, you try to encourage everything that your child can do, and let him do it on his own, instead of you doing it for him. But most of the time, everybody around you will point out everything that your son can not do and can you please fix it for them?! It is inconvenient for a teacher to have a child who walks out of the classroom or who hits his classmates out at recess. The physical therapist will tell you what you have to practice on, with your child. The speech therapist will tell you what to do, as far as language goes. EVERYBODY points out to you, what your child’s shortcomings are, because this world does not really believe in the fancy words, that there is a place for everyone, that it is alright to be different. Your difference must be erased somehow and schools and work sites are not set up for DIFFERENT. You as a parent, is ordered to FIX your child so that he fits in. You can’t do that by only focusing on what he can do!

Number 8, is all about being social oddballs. Uta the psychologist in the program “Living with Autism” said that what autistic people completely lack, is the social sense, that the rest of us are born with. As a child learns social skills, the more it fits in to the society around it. But autistic children do not learn and are not born with that sense, so they need constant help. The results are otherwise getting bullied, ostracized, and loneliness. They do not really want to be alone, they do like company, they just don’t know how to handle things nor how to act. Children can be very cruel. They will bully the child which is different. And grown ups will avoid the different, the socially embarrassing people. The socially different people make us feel insecure, because they break all the rules.

What is it that autistic children and grown ups can not do? They can not “see and experience the world from standpoints other than their own”. Uta said it so well. They get angry when we do not know what they think and want, before they have told us so. We all have the same thoughts as the autistic child, right? The same brain? Uta showed two examples of the same thing, which illustrated this very well. Uta put a marble in one box of three and then walked out the door. Another person moved the marble to another box. If you ask an autistic person “where will Uta look for the marble?”, the autistic person will tell you that she will look in the box, where it has been moved to. Not in the box where she put it herself, before leaving the room. The autistic child or person does not understand how Uta will think. That we expect to find things where we last put it. Even if another person has seen it being moved.

Johannes could never socialize with other children at pre-school or in school. He did the most bizarre things, like sticking a fork in his neighbour’s face at lunch, not understanding that this made the other person feel very uncomfortable. Autistic people say things that hurt other people and they do things that hurt others, and they can’t understand why the other person gets upset with them. Nor does an autistic child see why noone wants to play with him.

They lack flexibility. I pointed this out in the first part of this blog post, which is split in two. Disappointments are complete disasters to them. There is no flexibility, while with the rest of us can see that mistakes are part of learning and growing. It is not the end of the world. But the autistic world is black and white, it is either or, not in the middle.

“Gubby” is not the typical autistic child in that he actually is naturally curious. He is interested in people’s emotions, why do they feel that way, why do they do that. But most of the time, I must admit that “Boo” accepts things the way they are. He doesn’t really want to know why things work the way they do. He is not really curious about anything.

Self-esteem. Believing in yourself and daring to try new things Notbohm says. Getting over bad remarks and realizing that they only say things about themselves, not you. Sorry, but if this is a criteria for autism, then I am autistic. Because if a child hears nothing but bad remarks about their personality, their looks, their body, their results in life, then that child is not going to have any kind of self-esteem. My mother always told me how ugly I am. She told me to go to a tanning salon because I was too pale, put make up on to give myself colour, to have my hair permed, because it was ugly straight. In all my teen years she told me my bottom was as big as a barn door and that I should diet. (I was never over weight, wearing size 36.) Never ever was she proud of that I came home with the best grades and 100% on tests or close to it. Because she herself hated all education. So she complained about me studying. And as far as my religion, well she threatened with having me committed to an insane asylum since it is not normal to think about God. Having more than two children was wrong. My house was not clean enough for her, so as soon as she arrived as our guest, she started to clean and put away things, so we never found them again. Nothing I have ever done, has been good enough in my mother’s eyes. I am a total failure. And the extended family always agreed with her, reinforcing everything she said, to push me down in to my shoes. Yes, I do believe that it reflects more about them than me, but it doesn’t make me feel better about myself. Not even today.

I have not stopped living though. Nor have I stopped trying to do things. But when I see how people have torn down one child of mine after the next, I do realize, that this will go on no matter what you do. You can hug and kiss your child and tell them that they are diamonds in your life, but when the rest of the world doesn’t agree, your child is still going to get a low self-esteem. From day 1 in school, people complained about “Boo’s” behaviour. And he has not succeeded. He will not try new things anymore. He even tells the teachers that he will fail so what is the point. School, classmates and other parents can destroy your child. So whether you have a mother like mine, who clearly could not really love me, or a loving parent, you can still end up with no  self-esteem.

When Johannes went to test if the military would take him, he utterly failed the IQ test, showing him having a below average IQ. When it was time to talk to the psychologist, this man told Johannes to take his bag and get out of his office, that he was too stupid and psychologically unfit to do military service. Surely there must have been a better way for the psychologist to dismiss him? In gymnasium, his Swedish teacher told the entire class that Johannes was too stupid to be in there, that he had never even read a single book. His reading was very selective. By then he had read all the Harry Potter books once and the Lord of the Rings trilogy, three times. I don’t think he has picked up another book since and he was not interested in reading anything but those books. But that is just another example of, how human beings can tear down another person and make them not want to try anything again.

I am a hyper-sensitive person. I can not let things go. I sit and mole over and over situations I have been in. Thinking about what was said, what I said, what I should have said instead, what I did and should not have done. I love mysteries and trying to solve the problem before the police/detective. I can think about a film I have seen and discuss it in my mind or with my husband at length. Normal people do this. Autistic do not. It is called the big picture thinking. How does this fit in to the topic though? Do not know? But she did bring that up and then she moves on to say that autistic people do not really want to be alone, they want company, but it is too painful. They know they lack the skills, but do not know how to approach their shortcomings and how to get over them. It is too painful to think about it, so they choose solitude. Which in itself is a scream for help.

In a second, when you meet a person, you think about that person’s feelings and thoughts, you show you want to communicate, you read the signs in the other person’s body language and eyes and then you talk. The autistic person can not do this at all. Often he can not even talk properly. He doesn’t understand sarcasm, jokes etc. See the earlier post about this. And his own language can also be difficult for us, to understand. Johannes, my oldest is very difficult to understand. He speaks in a monotone voice, too softly and very, very fast. And then he gets insulted when you say you did not hear or understand. “Boo” speaks loudly, VERY loudly, and “Kitty” (with ADHD) speaks not only choppy but so slowly that your mind starts wandering. The autistic child and adult fail to understand body language or rather doesn’t notice it being there. “Facial expressions and emotional responses” often are also often missed, since many autistic people avoid eye contact. Or they just can’t interpret what they see, since they can not feel what others feel. Nor does the autistic person understand personal boundaries. Some will not want you to stand close, like “Boo”, others like “Gubby” comes too close for comfort, for most people. Like I mentioned about “Gubby” at the bank, in my previous post on this book.

What most of us very soon discover, is the fact that if we are not forced to become our child’s defence lawyer, we at least have to become the child’s interpreter and mediator. Which is all well at home and when the child is with us. But the more the child spends time in school and in other places, the less control over things we have. They are on their own in a world that doesn’t understand them. And that is where they undoubtedly fail. And in my world that means, that I get phone calls and e-mails and am called in to conferences about my failings as a mother, since my child has behaved in this or that manner towards other people. In this respect, it doesn’t matter that my boys have diagnoses, because when people do not know what the handicap entails, it seems like it is always the parent’s fault and a lack of proper upbringing.

Chapter 9/the 9th thing you need to know, is perhaps the one which is the most important. Meltdowns. They are the message from the child that he can not cope, that something has rocked the boat. You must find the trigger in order to prevent a future identical meltdown. Oh how I wish the school would do this! Once the child is in affect, it is too late to do something. He needs to cool down somewhere but as soon as you can talk to him, it is time to find out if it was biology, psychology or environment, which caused everything to collapse. When “Boo” has big meltdowns, the cause is usually disappointment, maltreatment or he feels that he has been treated unfair. Like being accused of things he hasn’t done. Being accused of being fat, which he is not, being accused of having ADHD, which he has not. Being accused of peeing on the school loo floor, which others do too. And one big trigger is adults being very bad examples! He also gets frustrated when he feels goals and expectations on him are too high, when he doesn’t understand what he is supposed to do, why he has to do it in the first place and more than often, he actually has a difficult time to physically do things.

One thing which an autistic child can not handle well at all, is when something he counted on, does not happen. He likes things to be just like he expects them to be, like he has imagined, and disappointment is too much to handle. For some children it takes a long time to get over the disappointment. Routine and Familiarity is A and O with these children. Everything else will rock the boat and make the child feel insecure. In “Gubby” it shows by the fact that he gets scared, huggy, clingy and wants re-assurance. He doesn’t dare to do things he normally does, like go fetch something from a bedroom or go to the loo on his own. Suddenly he regresses and needs help with everything and feels unsafe. “Boo”, on the other hand, gets aggressive and misbehaves. Acts out. Destroys things. Screams. Runs off.

As far as maltreatment goes, it is a serious matter and the book advocates zero tolerance. But as with school, as a parent I can testify that is not that easy to act zero tolerance. In school, all teasing and bullying goes on behind the teachers’ backs. It is classic isn’t. All of us who have been bullied, know that when other children did mean things and said mean things, there was not a single adult around. And when one dared to tattle tale, the teachers never believed it, since those children were always able to fool the grown ups. It is up to grown ups to grow up and not believe that children are all innocent. They can be cruel and it serves no purpose to be blind. As far as home is concerned, the same problem occurs there. A sibling whispers something mean that is out of ear shot. A sibling kicks the child under the table or gives the child a look. Little acts can trigger things. In my case, I have a teenager that acts out and the psychologists at both BUP and habilitation have told me that she has to be allowed to be a teenager and do mean things. That it is part of growing up. I do not agree. You do not kick on those who are weaker than yourself, in my household and I am of the strong opinion that there should not be any bullying at home. If that is the only place on earth where you can feel safe, that is how it has to be. You should never fear to go home and you should never meet with disapproval at home, at least. Let the world hate you, but at home you are loved. And I do my best to instill this in my children. One day I hope they will understand and deep down I think they love each other, even if it is difficult for them to accept each others’ oddities and handicaps.

As far as adults go, you really have to be an example. Stay away from your child when you are angry or your pupil. Notbohm quoted author Laurence Peter here, who said “Speak when you are angry and you will make the best speech you’ll ever regret.” True! You don’t usually say anything of value when angry nor do you write anything that should be published, in the heat of the moment. Do not make fun of the child, do not compare it to someone else and do not accuse the child if you have no evidence. To be honest, does this not apply to all children? And to adults alike?

Finally, the autistic child wants to tell you to love him unconditionally. God has given this child to your for a purpose. As Hercules Poirot tells the insurance person who doesn’t want to pay out the premium: You just have to accept it and deal with it. You have to make the best of the situation. No use in crying over spilled milk. So your neighbours can send their children off to school on bicycles, go to a fair, have their children in after day-care, go to work, both of them… There are things you can not do when you have an autistic child. There are more things you can not do when you have two autistic children and even more things you can not do when having a child with ADHD on top of the other two. In a way, you don’t have a life. A life outside your home that is. You have to live your life with the phone by your side, the computer nearby to answer e-mails, and work is often out of the question. Your career is your child. Your child needs help in school and you have to fight for it. You have to fight for all his rights because they do not come by themselves. Your child costs more. You have to avoid doing things, going places, avoid people… Yes, life is tough and a struggle the more handicapped children you have, especially when their major handicap is a social one. But becoming bitter about it really serves no purpose. It is not productive.

A friend asked me if there are no sunshine moments at all, because I rarely write about them on my blog. Yes, there is. But blogging is a lot about venting, isn’t it? At least for us who are house bound. Who have been forced to shun society because society do  not appreciate children who are different, who do not fit in to the mold. We hurt and we have noone to talk to, because when we do, they accuse us of not being able to cope. Then the blog becomes our communication partner. A one-way such. But of course there are sun-shine moments. But they are so quick and so fleeting, that I save them in my heart or send a note off to my husband’s mobile. For me, they might seem major things, but for someone, who does not have an autistic child, they would not be meaningful at all. When I watched the “Life with Autism” program on TV, one thing shown was how autistic people really pay attention to detail. They were supposed to find Wally, in a painting, and the normal person could not find him without lots of clues, while the autistic persons found him right away. Yesterday, I was in the shower and “Gubby” thought it nice and warm in the bathroom, so he joined me in there. He looked at me and immediately said “But oh, mamma, you must not have that on!” I was wearing my silver bangle, which is almost impossible to get on and off. I sleep with it and shower with it, there is no point in wrestling with it each day. Either I wear it all the time or not at all. He noticed though! And pointed out that this was not normal to shower with. And I had to explain, that I can’t get it off so it is alright to shower with it.

Another time he laughed and said that I sparkled. I had no idea what he meant, till I looked at myself in the rear view mirror and noticed that some of my eye shadow had fallen down on my cheeks. Just the sparkly bits. Since I only wear make up on Sundays, usually, he noticed that there was something unusual with me, taking him to pre-school. Can’t remember where I was heading with make up on, in the morning! I usually don’t have the time to get earrings on during the week either, but when I do, he is the only one who walks up to me and says “Uh, how beautiful!”. He said this when I had a new nightgown on one day as well. He is very observant, notice when something is not right and has a clear view of what he finds beautiful and not. To me, that shows a rare form of intelligence. While he might not be able to read other people’s feelings and doesn’t know that it makes me happy, when he tells me that I am beautiful or that he likes me or that he has missed me when he was at pre-school, it still proves to me, that he is in there at least and that he is very much a little person, with feelings and thoughts.

Both “Gubby” and “Boo” do things on their own time schedule. I am in no hurry. I have the rest of MY life to be there with them and help them along the way. They do things daily which make me smile and feel happy about being their mother. At the same time, “Boo” does lots of things which make me sigh or cry inside. Had I wanted them to be born normal? Of course. What parent does not want their child to be spared pain, ostracizing, bullying, hardships that other children do not go through. On the other hand, who would they have been? “Gubby” is my little angel, partly because he is autistic. Thanks to his autism, it is still alright for me to look at wooden trains, soft animals, baby cutlery and so on. If you enjoy being a parent of small children, that is what you get when you ave a child with ADHD or Autism. Question is when and if they ever move out of that stage.

After Notbohm has finished the ten things we ought to know, she adds an afterword, a stupid chapter on her graduating son, a word discussion etc. For me the book ends on page 135, not 197. Her personal story and bragging has no importance to me. But she did say one thing in the afterword, which I would like to share. I have no idea what religion she belongs to. Being an American, I assume that she belongs to something. The sentence she wrote, was very Church of Jesus Christ of Latter-Day Saints: ” that Bryce had chosen me as his mother, that somehow across time, he believed that I was the one for the job, renewed my determination to do right by him.” (She does talk about reincarnation and stuff, which proves she is not a member of above religion.) But I firmly agree, that somewhere in the pre-existence, my children chose me for a mother. I know that our Heavenly Father told my sons there, that they would  be sent down to Earth, with their handicaps, that these were the trials they would have here and have to overcome, best they could. And they accepted this. Yes, I believe that I am their particular mother for a reason. This was the trial I have to go through on Earth, with many other trials added to this one. Noone else could do my job. I owe it to them, to do the best job I can, because they believed in me in the pre-existence, when they chose me for a mother, and they believe in me now. I can not let them down. When I sit at habilitation and they ask me if I can really cope, I can not bring up my religion nor what I believe in. They are atheists, so how can they ever understand. But what I can tell them is this and is what I have told them: “Noone else can take my place, because noone else loves my children the way I love them. Noone can help, because they don’t know where the help is needed. It is my intuition who tells me what each one of my children need and to have an extra person show up to help, just means that I am forced to take care of one more!”. I will fight for my boys, as long as I have life in me and a brain to do so. When I am no longer strong enough or dead, I hope that they can have learned to look after themselves, and if not, at least D. have promised to take over.

Take these two blog posts for what they are, a personal comment on Notbohm’s book and always remember what I said in the first post about it, which contain’s comments on the first five chapters and things we need to know: These are another person’s experiences and will never be yours. You have to go down this road on your own and make your own mistakes as well as succeed. Her book wants to teach you how to succeed, but since no autistic child is the same, only your own experience will teach you how to do that. With my posts, my only aim have been to show all of you parents out there, that you are not alone. We are thousands, millions, going through this. Alone, yes. But also together. And you know something? Our children are unique! Because they teach us to re-discover the world! No other children do that!

Comments Off on My Friday book: “Ten Things Every Child with Autism Wishes You Knew” … continued

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My Friday Book: “Ten things every child with autism wishes you knew” ( split in to two posts)

I grew up with a father whose favourite saying was “Own Praise Smells Bad”. And it really does. Noone likes to hear someone sitting praising themselves as being great and having done everything right. It is not out of jealousy we dislike it, it is because the person totally lacks humility and thinks she is an expert on life, that she is perfect. And as the author of this book claims, noone is perfect. No, I know. There has only been one person ever on this planet who indeed was perfect. His name all Christians will know by heart and this is not a post about religion. But in a way it is, because to talk about perfection, to talk about dealing with what life has handed you in an appropriate manner, never giving up, well it all amounts to our time here on Earth and why we are here.

Before I read this book, I read another book about autism, written by an autistic person (The Reason Why I Jump). It was looking at the disorder from the inside and not from the outside in, making that book unique. Because this “10 things…” book, is by no means unique! As a matter of fact, the person who translated the autistic boy’s book, actually warned about books like this one. That self-help books are dangerous and that one should watch out with memoirs, because that is what they are, one person’s experiences and memories, which might not at all pertain to another person’s. Have I lost you? I’ll simplify: As for shelf help books, they are dangerous because what works for one child, might not work for another, and that will put you down as a parent, might make you give up… Likewise, one person’s success story, is not likely to be yours!

I give this book three stars because it will tell you some ways that autistic children act and think. But it is also her memoir and no one person’s life is the same. She talks of success, but at what starting point was she? Every parent of an autistic child knows that there are not two autistic children who are the same and no matter what you as a parent do for your child, everyone around you can tear that down. Through her book she puts an enormous guilt trip on you as a parent, because in her opinion, if you fight enough for your child and just say that your child can do everything, your child will end up normal as hers. Well, good for her, that she had all the money in the world to spend on her son. Good for her that she lived in an area and had schools available for her son, where she could find dedicated personnel. But today few schools have that money. And depending on where in the world you live and how rich you are, how strong you YOURSELF are, your story will be very much different from hers, no matter how much stamina for fighting, you are able to muster up. And if your child does not get her son’s life, she blames you, there is no other word about it. What parent wants to read a book like that? For most of us, it will be 20 years or so, before we see how successful our efforts have been.

I have three sons to compare, one un-diagnosed and two boys with identical diagnoses, and yet there is nothing identical about them. My one son lies, which she claims that autistic children do not, he does retaliate and take out revenge even though she says autistic children do not have the capacity to figure out how. When you read statements like that in her book and you see something different in your son, then you start wondering about her knowing anything, except what she has seen in HER specific son.

There is no way to get help really. You have to travel the road on your own. You can’t ask another woman what it is like to give birth to a child, how much it hurts, what you should demand along the way. Her pain is not your pain, her experience is not yours and the midwife working with her, might not be the one you receive, and even if you get the same one on the D-day, different personalities will work different together. One woman might like a gung-ho midwife, while another woman will like someone quiet who is just there for her. You can’t ask someone to give birth for you, you have to go through it all on your own. And the same goes for your autistic child, not one single experience will be the same. What one person is offered at one school is not what another one is offered in another part of the world or in another school.

The only thing you can get out of a book like this, is the fact that you should never give up, that there is always hope. Our oldest son Johannes was never diagnosed because it was never done in those days. I made many mistakes with him since I had no idea what I was dealing with. Yes, he functions alright in society today. But just alright, not great. And with the proper help and support, he could have gone further. He might have been spared scorn, bullying and condemnation, had there been a label put on all his problems: Autism. A label which can in many cases at least give you understanding. With him, I knew something was wrong from day one. But it never entered my mind that he might be autistic, because in those days autistic children were just children who sat and made monotone noises, rocking back and forth, hitting their ears, slamming their heads in the walls. You could not communicate with them, because they refused to look you in the eye, they were in their own bubbles. Had anyone told me, that this is just a very small percentage of the autistic children, I might have understood that I must seek professional help. All the tears and the anguish I went through till I finally gave up on him, when he was 23!  It hurts to know that some of it, was unnecessary. Soon two years ago, is when I had had enough and had to focus on his handicapped three youngest brothers instead and leave him to fight his own fights. He has shut me out anyway. We are just too much for him sensory wise. Or should I say too much chaos for him to handle, who needs to have only one-three things to focus on in life.

What I am trying to say is, that a diagnosis helps. It is devastating finding out that your child is not normal and that the behaviour you thought was a passing stage or just part of their personality or a bad habit, is actually there to perhaps stay forever. It is tough to accept it. But at the same time, when you know something, when you get a name on something, then you can do something about it. You can read and become more educated. You can learn how to deal with things. You can learn how to explain to others. You know on what level you have to put your fight on. But you also know what behaviour you can’t blame the child for. Because a lot of ADHD and autistic behaviour is borderline to what one can accept or should I say, that society can accept. That is just how it is and it is part of the problem.

In typical preaching fashion, Notbohm starts out pointing finger at everyone who spells autism with a capital A and tells people that it is wrong to say that you have an autistic child, that you must say that you have a child with autism. Well, in my world, I get angry at her because it doesn’t matter whether you spell it autism or Autism. A label is just a label and there is something wrong when she has the time or energy to be silly about a word! What matters is the handicap itself. And if you say that your child has autism, you are telling the world that it can be cured. Sure, maybe she cured her son of autism, but for most parents, that will not be a possibility and to slap their hands and say that if they worked hard enough, they could, is wrong. You are born with autism, it is in the genes, and there is no way of curing it like if you have a disease. The sooner you accept that, the sooner you can start learning coping strategies for yourself and your child. And to all those of you who object to it being a genetic handicap and blame it on vaccination. Forget it! Look at the world, not everyone who is vaccinated get the handicap. If it was the vaccine, everyone would become autistic. And look at my family. Out of 7 children, 3 are autistic and one has ADHD (And the doctors have now decided to test him for autism as well.). That speaks loudly! Genes. No matter how sad it sounds, this is more serious than you think.

My children are autistic, and they will not be cured of it. I have accepted that. I have also accepted that they must one day be told that they can not dream of becoming police officers nor military men, because autistic people are not welcome in those professions in Sweden. But as far as anything else, if they have the brains and the stamina, nothing should stop them. Sure, Johannes was told by the military that he is an idiot and should not show his face there again, and this without a diagnosis, but that did not mean that he could not have tried at least to become something else. He is too lazy though and doesn’t want to put an effort in to anything. He is content to diet, build muscles, learn how to kill people in MMA and whatever else you don’t need brains for. His life and his choices. I hope that my other sons will choose to at least try for something more worthwhile. That I will be able to show them, that hard work will make them grow and become better human beings.

But now we are discussing children (not my oldest son who does not even accept that he needs help), where we still can help and make a difference. Notbohm has isolated ten different areas which we all need to consider, not just parents and siblings, but also teachers and the community as a whole.

Number 1 is the fact that no matter what, the autistic child is a child. A child that is not just autism but also itself. Did that make any sense? When my son’s speech therapist forced us to have our son tested for autism, I felt anger. Because I did not care about anything else than that we loved this little sweet angel of ours. He has always been sweeter than sweet and have had to go through a rough time from day one, because he was born with one faulty kidney. It felt like, oh no, not one more thing to cope with when the psychologist and special ed teacher sat us down and told us that he is also autistic. For me, his autism have explained why his speech is so late and why he needs for us to speak in more simple ways. Why other children do not care to try to interact with him because he doesn’t know how to play WITH other children. But  he is a delight to be around and you love helping him with everything from getting dressed and feeding him, when it is things he finds too difficult to eat, to other things. In a way, it is like having a little toddler still, even though he is 6 years old. But associating with him is not just like being with a “baby”. He says funny things, you can talk about things that he wonders about or which he has seen on TV. So in that way, yes the autism diagnosis explains why he is good at certain things and why other things do not work as well without help. The big task for everyone coming in contact with an autistic child, is to find out WHO IS THIS CHILD?! Why help, if he doesn’t need the help? But it is very important to see where he does need help so that he doesn’t fail. My other autistic son does not act like an angel, but in a more autistic manner, than his brother. He tests your patience to the limit. He does things which drives people mad. And people who does not know that he is autistic, says that he is wild, mean and a devil. Catholic parents seem extra narrow-minded since these are comments I have received from his school, him attending, yes you guessed it, a Catholic school. When a child hears that enough times or all the time, the child’s self-esteem becomes non-existent and the child will not dare to try things anymore and will have a horrible self-image. I can honestly say, that the Catholic school has managed to destroy my son in the three years he has been in attendance. We are now moving him, in the autumn, when the new school year starts. We will have to see if a child can self repair and recover from what he has been through. So, as I said above, what ever you do as a parent, can be torn down by other parents, cleaning personnel at school, teachers, administration people at school, even the kitchen and custodians at school. In my son’s case, he has everyone in school against him.

Unfortunately there are a lot of mean things going on out in society as far as autism goes, which really frightens me. One thing I read on the internet was, about a parenting group on Facebook being allowed to bully autistic children. They call themselves something like “Moms against autistic children”. I just read that they had been forced to close their account but new have popped up again under new names. How can you be AGAINST a certain category of handicapped children? Who has ever heard of hatred against deaf children or blind children? What sort of society do we live in today?? Notbohm tells us exactly what sort of society: One which has started to use autism as a slang word. By calling a person’s look at economics, as autistic or someone’s sexuality as autistic, because it is without emotion, or teenagers accusing each other for being autistic, if they get tongue-tied or doesn’t react to being bullied. All this hurts the true autistic people, by making it to something which everyone has now and then. It makes it sound like something you have caused yourself and that you can get rid of it, if you just change. And it doesn’t give autistic people the respect they deserve for struggling with a really difficult handicap.

Number 2 is no doubt the one which most people have a difficult time handling and of course the child has an even more difficult time with, since he lives in the middle of it, which is that all the senses are out of sync. This is what my one boy has severe difficult with. He just can’t pay attention, behave, learn, adhere to social rules, but he will communicate alright, with you! The way they communicate with you, is not all straight forward though and not at all pleasant, all the time. They hold their ears, start repetitive movements, they show aggression, excessive silliness, clumsiness and have MELTDOWNS! “No matter how unprovoked, how random it may appear, behaviour never ever comes out of nowhere. There is always a detonator.” How I wish people would give my son the time of day, that they would search for the detonator, because they never do, out of sheer impatience or worse, they don’t know how!

What is it that these children can not handle? Notbohm suggests us imagining ourselves on a roller coaster, up and down, changing directions, dropping, hanging upside down, hair flying, fellow passengers screaming and at the same time you are supposed to conduct a meeting, clean your house, write a paper, give a speech, have a nice conversation, teach a class. Not possible is it? But we often can cut out a lot of what is going on around us to do what we are supposed to do. Autistic children can not do this at all. In a classroom they hear everyone murmur and move around and the teacher can not be heard over those sounds. And the hearing sense is just one of many. My little “Gubby” reacts strongly to loud noises, like a kitchen machine, a lawn mower, a motor cycle driving by. He gets panicked and I need to calm him down and tell him that it is alright and nothing dangerous. “Boo” speaks loudly and search for things which makes a lot of noise. At the same time, he can not handle all the noise around him in the classroom, at a swimming pool, at the sports arena, …

The tactile sense is also a difficult one. Both boys refuse to wear some clothes. They refuse to eat some things because of texture. Nothing saucy get a chance. So no casseroles, pies, puddings. “Boo” can not smell things, so his urine leakage is a problem, since he does not want to change clothes when he stinks. And “Boo” will not let whoever touch him and will scream loudly that someone has hurt him, when the person has hardly even touched him. Things you can be reported for. Cutting “Boo’s” hair is a huge trial in itself, him screaming bloody murder. But especially when there is a lice alert at school, it just has to be done! Nor can I let him walk around looking like a troll!!! “Gubby” is the other way around. He loves touching people. He will hug anyone, give them a kiss and he loves going right up to your nose with his and look you deep in the eye. He did this to a lady at the bank the other week and I had to tell him that she might not like it. She started asking me all things about autism when I told her that he is autistic and can’t help himself. What was I supposed to say to a shocked elderly lady? They became friends though. He asked her if she was a mamma and a grandmother.

Number 3 is about learning to distinguish between will not (“implying premeditation, intent and deliberate behaviour”) and can not, which has nothing to do with choice but a “lack of ability, knowledge and opportunity”. The schools and of course everyone else need to learn that  “all behaviour is communication and that all behaviour happens for a reason”. And I believe this is where autistic children are the most misunderstood! Because people around them only look at their behaviour as offensive, not why it is there in the first place. They think the child chooses it, itself. Instead of understanding that we have to be detectives and find out the cause. I would have thought it natural for people, especially if they have children of their own, to know that there is always a reason for a child’s behaviour. But I get reports of “Boo’s” behaviour every day. I am told to tell him not to do this and that and it is perfectly clear to me, that they NEVER EVER look at the reason behind his behaviour, they never go sleuthing and deal with the problem itself.  They judge HIM because they choose to disregard his diagnosis and what that handicap really might mean. When you have no knowledge, it seems to be the way to go. Take the easiest explanation. Bad behaviour, nothing else.

What can the reasons be for say my son walking out, refusing to do what his class is doing? Anything really. Not hearing entirely because he did not comprehend what was being said. Doesn’t know how to do what you are asking him to do. Things are overwhelming. The motor skills are just not there. It causes pain. Or how about just being tired or hungry? Most of all I would say that the reason my boys don’t do things, are because they don’t understand what they are supposed to do nor the rules, and people giving them too lengthy instructions so that my boys are lost after sentence one. A very strong point is also that autistic children are very afraid of failure because first of all, they are often given tasks where they are likely to fail, so they are used to failing. Secondly, in their world there is no grey zone, either you fail or you succeed, you can’t be in between. “Gubby” always wants to do his best which everyone at habilitation has noticed. He has even started to ask, “was that correct, did I do right?” because he is not given feedback in testing situations. But “Boo” has got to the point that he doesn’t care. He does things sloppily because he just wants the task over and done with. It is clear that he has not understood instructions nor how it is supposed to be done. He does not expect praise for the task but wants to know if HE has been “duktig” in himself. “Duktig” meaning being a good boy doing as he is told. There is a difference.

One signal which should alert everyone that something is up, is the attention-seeking behaviour. Notbohm says that it is good because it means that the child “wants to interact”. But hardly anyone will see it that way when “Boo” interrupts what the class is doing. He gets thrown out or he walks out and noone walks after him. In school his assistant of course does walk after him but she has no knowledge of what to do with him, when she catches up to him. Most assistants have no training at all. It is an in-between career choices job or one taken in desperation. In church, everyone ignores him. Not a soul walks out to see what he is up to except me, if I am in the same room as he was when he walked out. And most of all, noone asks him what he did not understand, what was so overwhelming, what upset him. It can be the boy next to him swaying on his chair or TOUCHING “Boo”.  It can be the boy next to him whispering something mean. It can be them singing songs he does not know the text of at all. Being scolded for not having waited his turn. Or talking about things which are way above his head. Which church things usually are. To understand religion, a child has to be able to do abstract thinking and have empathy, understand other people’s feelings and THIS autistic children can not do.

I just watched a documentary called “Living with Autism” on TV. I have seen the last 40 minutes of it twice now but have not been able to catch the first 20 minutes. Uta, the psychologist who has made the documentary, explains everything very well, but only a fraction really. One of the things she said was, that they do not lack empathy. But I would not agree. They do, as it does not come natural like for the rest of us. They can learn to show concern but deep down, they can never feel what we can, because they do not understand how other people think and feel. They lack the extra social sense, which the rest of us are born with. She showed it over and over in her program, how they really can not imagine what other people think, and how they get very, very upset when we don’t know what they want and think about, before they tell us. In their mind, we don’t have a mind of our own. We think what they think. That is why there is disruptive behaviour because “Boo” can not ask for help nor does he know that he needs to, since the people around him lack the knowledge of how to read his signals. And I will admit, that I miss a LOT of the signals, since I have five other people’s signals to read or attend to.

“Kitty’s” now retired teacher always brought up to me at developmental talks that he wanted praise and that she did not want to give it, because other pupils would get jealous. Now it has been decided that “Kitty” is also going to be tested for autism, since the hereditary factor is 80% and he already has three brothers with it. She did wrong though, did she not, when she always withheld praise but daily screamed at him for all the things he did wrong. (He has ADHD.) In the book 10 things… the author claims that the ratio for praise and criticism must always be 4:1. That is not what the teacher did towards “Kitty”. For the most part it was criticism and no praise at all. How can a child thrive at school then? “Boo” is in the same situation. Why is it so much easier for us humans to criticise than praise? What is it in us, which puts this lock and key on our praise comments. Why do we want to hold them back? It should be natural to just throw it out when it is due. I think we have got very, very afraid that children will start thinking too highly of themselves if they get praise, but autistic children NEED praise, to know that they are doing ONE thing right at least. It really is not that difficult to praise. You just have to practice. Now, I am not bragging but I praise “Gubby” all the time, because everything he does, is an improvement of yesterday. He does things that habilitation says he can not do, that BUP said he would never do, that his diagnosis says that he should not be able to do. At the same time, there are things he clearly can not do, because of his autism, but I have chosen to not focus on those things nor point out to him that there is a shortcoming. I ignore the things he can not do and do them for him, since I know before hand what it is he will fail with. That is a parent’s strong point, that we know our children so well and that other people rarely bother getting to know our children enough to see when they need help before they need it.

When “Boo” storms out of a room, it can also be interpreted as him removing himself from over-stimulation or under-stimulation. HE knows that he no longer can cope and in a way it is very empathetic of him to do so, in order to not disturb the others when he can no longer cope. This is when “Gubby” starts flaxing about with his arms, like a bird taking off in flight. He does not leave the room and bored children will of course focus on him and wonder what he is up to, when he starts. What he does though, is telling us all, that “now things are getting too much for me”. He can do this in a queue at the supermarket, when things get tense in a film OR funny, he does it in a testing situation when he doesn’t understand what he is supposed to do or finds it too difficult. He was tested Monday and when it was clear that he was answering every question wrong and I was on the brink of telling the speech therapist that we might as well quit that part, because it was too difficult for him, he looked at her and said “This is too hard!”. He has never said so before, but has got off his chair and flaxed instead. And “Boo” just walks out. “Kitty” will just say that he needs to go to the loo and will not come back.

Notbohm goes through all the behaviours which are signs that something is up and the next one is control. The child feels that the world around him is not controllable and he wants to hold on to the little control he feels that he has. This is when “Boo” does what he pleases no matter what we have told him. He goes off and does his own thing and it puts him in danger. When the class went to the cinema, he ran out in to the street to not stand on the pavement, where everyone were making too much noise and probably were pushing and shoving. This taking control will ALWAYS be regarded by and looked at by teachers as “confrontational, aggressive and defiant” (more or less quoted). And I am ashamed to say that often I forget as well, because it is soooooo much work keeping your eye on an autistic child and prevent all situations beforehand. With “Boo” you just can’t prevent everything. So he gets hurt. He does not get to go to plays, concerts, cinema, library, go swimming, go to the gym class, because they can not control him. He takes charge and takes off and they feel it is too dangerous when they can not handle him. He loved being at Legoland last year. We hated it. Because the above behaviour was what we had to contend with between every time we sat on a ride. It doesn’t work, so either we can never ever go to Legoland again as a family or someone will have to stay home with him. Alternatively, one adult have to walk around with him alone. And we would have to go in the autumn when there is a minimum of people. This Legoland situation is a classic one, where the autistic child does not function. And yet, “Gubby” had no problems what so ever. He was just happy to be there and never did anything “bad”, but kept a positive attitude throughout since that is his favourite place in the entire world.

Notbohm told the readers that in our situation, at Legoland, “Boo” was telling us that he was at meltdown point and we should have dropped everything and have left. Right, that might work in her family, with two salaries and two boys, one with autism and one with ADHD. She did not mention if her son with ADHD was with them, when they were in a similar situation as ours. Our trip to Legoland had been planned for a year. I had bought the entire trip on credit card, or we would not have been able to go at all. Every day his autistic little brother had asked if we were on our way to Legoland. So, we had one little boy who would not have survived leaving Legoland, half an hour after arrival. When you have paid 1000 DKK (£ 98, € 134, $ 146) in entrance fees, you have driven for four-five hours and have hired a flat for three nights, you don’t just leave and pack up your family and head back to Sweden. Because what will happen? Well, you have a credit card debt that will take 6 months to pay off, whether you actually stayed in the flat or not. You will have three siblings who are so disappointed that they will never forgive you. And those siblings, at least two of them, will resent the sibling even more than they already do. When going on a family  trip or outing, you do so to strengthen the bonds of family. You want love to get stronger and you want to have fun together, since a lot in everyday life is not so fun. The trip is not organized for one autistic child only. And while a lot of every day life is focused on preventing meltdowns, chores and nagging on children to do what school expects them to do, and us parents expecting cleaned rooms, hygiene and so forth, a family holiday is meant to get away from all those things. Even if it is for only three days. In our case, it meant everything. A father who is never home, was available full-time. All the children had planned on which rides to go on. Had saved their few coins to see if they could buy something in the souvenir shops. Everything could not be allowed to be focused on “Boo’s” autism. Sure. T. could have taken “Boo” back to the flat, 11 kilometers away, from Legoland and sat and stared at the walls all day with him. But it would not have made “Boo” happy to leave Legoland. And T. just felt that why should he sacrifice himself and his hard earned money? He wanted to have fun with his children. And to be honest, so did I. This was it, this was OUR family holiday with two teenagers at home, looking for work. And I was not going to let “Boo’s” behaviour destroy our three days.

Perhaps you have not been on a holiday, so I can bring up an everyday situation instead. Imagine yourself living in a village and basically never getting to go to a shopping mall. But you need something to cheer you up? A new jacket? Some new tops? Because your hypothyroidism, which leaves you too tired to drive to the shopping mall between 10:00-11:45, to shop on your own, forcing you to sleep instead, also having made you put on weight, so you can’t wear your favourite things anymore. You name it. Against your better judgement or not having any other alternative, you bring your boys with you to the mall after fetching them from school, since you are in the vicinity of the mall anyway. You have arrived in a shop and you see something you really like. You grab the things to go and try them on and then the boys are missing. You drop the clothes in the corner of a shop, hoping noone will take them, because there were no others in your size, and you run looking for the boys. You find one flaxing outside the shop and one has just taken off to the toy shop or the loos. You get angry and tell them to come back and the one who had run off, tells you that he is bored and wants to go home. You grab the clothes and decide to chance it that they fit and go to stand in queue instead. That is when the aggressive one tells the angel one to play hide and seek. Or crawl under the clothes’ racks. Or run out of the shop again? Notbohm tells you to just drop the clothes, take the boys to the car and go home. They are reaching meltdown and should decide over your life.

Now, that might work in her book and in her perfect little world. But since I get to go to the mall maybe once in three or six months, then I get hell-bent on paying for my items. More than likely, the items have to be returned because they did not look that great on or they did not fit. Which for me, means sending the bag with my husband, and after work, returning on the train to the town where he catches the bus to our village, he has to catch the bus to the mall instead. Returning home even later than usual. If you are at the mall, only browsing, yes by all means, leave. But if you have actually got to the point that you have fallen for something… Excuse me, but you as a parent deserve something for all your work! You can not sacrifice yourself entirely and never get to do anything but chores. It can actually be another scenario as well. The one where the child really needs a new pair of shoes and you just have to stay and try the shoes and pay. No other day will be better than the present one. Taking the bull by its horns in other words. Or how about when you are at the supermarket and in queue to pay for the dinner food. These are situations when the meltdown in our family, will just have to proceed. Sure it could have been prevented by going home at once, but the child would go to school the next day without shoes or the family would sit down to dinner staring at empty plates. No matter how much you cater to your child’s all needs, there are needs of others in the family as well, who need to be met. Including your own, to keep your sanity.

Revenge. Can a child with autism plan out revenge as part of can’t or will not? Maybe their brains can not plan such a thing nor carry out a plan motor wise. Which is what Notbohm claims. But “Boo” can certainly go and destroy someone else’s play, because he was not allowed to join in, destroy someone’s toy because he wanted it and was not allowed to use it, ruin someone’s painting because it received praise, hit someone because they just hit him, and eat someone else’s candy, because he wanted candy too. Whether you call it revenge or not, well that is a fine line, isn’t it. Someone like Notbohm would probably call it control issues or attention seeking behaviour. But to an insulted sibling or a neighbour child or class mate, it is called one thing only: Revenge.

She finishes the chapter by putting all the blame on you as a parent. If you have a can’t attitude, then your child will have it. You must always be the example. If your child is not happy, confident and full of self-esteem, according to her, there is only one single person to blame and that is YOU. And she of course have done everything right so she has the happiest, most content, best student of the year son, so she knows best. Good for her. Only an American could say what she says actually. No other nationality dares to praise themselves like that nor pass judgement on others. I believe that we all do our best, but failure is just part of the human experience here on earth. I do not work, I am home all the time. My work is my children. And yet I am not a supermum! I make mistakes daily. Even when I know my sons’ problems, I make mistakes because I have six children with very different demands and very different personalities and however much I try to be the spider on the middle of the web and foresee how each child will react to different things, I can’t stop things from happening. Because even if autism and ADHD traits are predictable and charted, the child will prove to every parent, that they are unpredictable. The more children you have, the less you can be there 200%, no matter how much you want to. And to say, well why did you give birth to seven children then, is not helpful, since I already had them all, when the diagnoses started raining down on us like plums falling out of trees, in the plum season. And most parents will be convinced that bad luck can not strike twice. It can! It can strike four times or more!

Number four on the list of things we should know, is that you might as well forget using the beautiful language you have adapted over the years, sprinkled with sarcasm, idioms, clichés, jokes, phrases from films, you name it. When you speak to an autistic child, you must be like God in the Bible. Jews studying the Kabbalah say that God never wastes a word, he only uses as many or as few words as he needs, to say something. That is how you have to talk to your child or your autistic pupil, neighbour or whatever. Simple and very clear sentences. Otherwise you loose them. Sure, you can look at your son and say: Put on your clothes now and let’s drive to habilitation because you are going to be tested today by the speech therapist. You know what will happen? My son “Gubby” will stop his flaxing and stare at me and ask “Are we going somewhere?”. I guess drive was the ONLY word he heard in that sentence. Instead the conversation will have to go like this: “Gubby, come!” – Here I am! “Do you need to pee?”. – No “Put your boots on”. – Are we going out? “Yes”. “Put your jacket on.” “Put your beanie on. It is cold outside.”. “Now mamma will get dressed”. “Open the door.” Once we sit down in the car and have got all the jump in to the car, fasten your seat belt, out-of-the-way: – Where are we going, mamma! “Habilitation. Remember where ‘Rakari’ works (He calls his special ed teacher this. Her name is Karin.)? – Yes. “That is where we are going. You are going to talk to Charlotte”. – Charlotte? “Yes. You and Charlotte will talk.” When we arrive to habilitation 25 minutes later. – What will I do here? “You are going to talk.”

In a way, you have to talk to an autistic child like to a baby or a foreigner who has just started to learn your language. Not condescending, not like he is an idiot, but you must think through what words you might use. Will he have learned this word? What happens is, you choose the simplest words you know for things. And when a word doesn’t work, you notice very well that it did not work and you have to try with some other way of saying what you wanted to say. In a way, for you, it becomes like trying out a new language you are just learning. You try to make yourself understood, so you will use the easiest words you have just learned and put them together to a sentence, without the problem of not knowing the grammar properly. The child understand no nuisances in the language. It is completely literal and your words weigh very heavily, to a degree you have never seen before! T., my husband, teases and jokes with his children all the time. That is his way of relating to them, his way of bonding. But it does not work at all with his autistic children nor with his son with ADHD. That sort of language is not the language that they speak. So they get upset and I have to step in like the police I am always forced to be in this house. I have to correct his language and be the interpreter, as well as tell him to knock it off, since they clearly do not appreciate it. But he does not see how it upsets them when he speaks a language they do not expect from him, nor understand. The worse is when he tries to get rid of their upsetness, with teasing, because that brings them to meltdown, not the other way around, of cooling down.

Test yourself with Notbohm’s examples. Do you tell your child: “Bite your tongue OR Don’t speak to me like that?” “Gubby” and “Boo” will think, why should I bite my tongue? That will hurt! And what does it have to do with me being upset?

“I smell a rat OR This doesn’t seem right to me?” What, are there rats around here? Where? I don’t like rats!

“Let’s call it a day OR It’s time to stop now?” Of course it is day outside. What else would it be when it is light outside. But I am tired and it is getting dark, so should we not call it evening?

One thing you have to be, is CLEAR. You can not tell a child to go look for something over there. You have to tell him exactly where to look, exactly what to do and drop all unnecessary words. Easier said than done. Quit kicking, is not good enough. Instead you must say “Keep your feet under your chair”. Let’s get going is no good but “We are going now” is the way to say things. Short. Concise. Precise. Instead of telling your child what they have not done, thinking that they then will do it, you must tell them exactly what you expect them to do. You can’t tell them their room is a mess or that it is cold outside, because it means nothing. They do not understand that what you really meant to say was clean your room or put on warm clothes today. You can’t leave the thought process up to them, you have to give them instructions whether they have IQ 70 or 110! I don’t think that the Swedish language is quite as confusing as the English one is, because we do not say things like “let’s wrap this thing up” when we mean, it is time to stop, we don’t say the car is acting up, when indeed there is something wrong with the car. So to all of you who use your language in this fun and interesting way: Stop it when you talk to autistic children. Yes, wrapping presents is fun but makes no sense if that is not what the child is doing right then. And a car which is acting up, what exactly does that mean since the car is not a child!

When speaking to your autistic child or someone else’s, remember to always give the child feedback. You must answer him, because to him it means that his message has gone through, that you heard what he said and understood. And the same goes for the child when speaking to him. If you do not get a reaction or answer, it simply means that your message did not go through to him at all and you need to rephrase yourself in a simpler or different manner. Yes, it demands more time to speak to an autistic child, more patience, more effort, but do it right from the beginning and it doesn’t have to mean more work. You just have to teach yourself to be on his level of speech and understanding of things and it becomes second nature. I don’t feel that it is a problem at all adapting my language to my 6-year-old. I have a “Gubby”-version of speech and another form for the rest of civilisation. And I have realised that “Boo” prefers my “Gubby”-talk. Why wouldn’t he? For me it has been more difficult to accept “Boo’s” diagnosis though, since he comes with everything above. All the negative aspects of autism are present in him and not in “Gubby” and the previous are constant battles to contend with.

Number five of the things we need to know, is that the child will communicate in more ways than one. Right, is that not what she has said all along in all the chapters? That all behaviour is communication. I do not know why she really have split these things in to different “things”, because it is all linked together. In this particular chapter she talks about autistic children loving to use phrases that they have heard in films. When they come at appropriate times, they sound deeply profound and make us shocked at the child’s intelligence. But maybe we should not be so very impressed according to Notbohm, because they are using someone else’s words to express what they can not express themselves. They have all these phrases stored on a hard drive in their brain and in my opinion, it is pretty smart to be able to retrieve them at the right time. It does mean that they did understand the phrase when they stored it. But according to the speech therapist, who sent “Gubby” to be tested for autism in the first place, it means nothing and is just him being a parrot. A parrot doesn’t understand what it is saying though, it just sounds hilarious when it actually coincides with something that is happening. But in the case of the autistic child, there is usually a thought behind.

Repeating what one has heard is called echolalia and “Gubby” sometimes repeats what I have said, like a little echo. To most of us this is unnerving, because it doesn’t make sense and usually that is the behaviour of mean children, bullying a child. In me, it wakes that hurt feeling I felt, when bullies repeated what I said, and I have to remind myself that my little boy is not trying to bully me. On the other hand, I really don’t understand what he is trying to do. Because he smiles when he does it. It feels like teasing but in another book I have read, the autistic child likes to control what he can control. And words he has just heard, he can control. Likewise, saying the same thing over and over again or asking the same question over and over again, gives him a sense of satisfaction because he is in control. According to the autistic boy, who wrote that book, they already know what the answer is but wants to hear it again, since that creates order in their world. Did that make any sense? You will get the same question about certain things, 100 times. It is just to accept it and answer the same thing every time. If you do not answer in the same way, the child gets upset, because he knows what the answer should be. The world is so foreign and scary, that these little things, like getting the same answer, is re-assuring him, that not all is scary.

Sometimes a film phrase or something he says, does not make sense to you. YET! Because you are not there yet, while he has jumped ahead of you. He has associated away from the main topic just like Stephen Fry does in his memoirs. I tried to read them and it drove me crazy. He starts telling a story, moves on to another and another and another, none getting finished and then suddenly you are back to the original one. Makes it difficult to read, since you don’t know when exactly you can take a break in the book, in order not to loose his reasoning. We can arrive at the pre-school and the teacher can ask “Gubby” if he is having a nice morning and “Gubby” just quickly nods his head because he is thinking about the music he heard in the car on the way to pre-school and wants to talk about that. But then what comes out, is something from the film, where that music was present. But he has left the music to the side and is talking about something which happened in the film. He quickly changes topics and usually I follow along since my thought process is equally quick and I can talk about something, but my thoughts have already moved on to something else and then something even further away, and when I finish talking about what I was saying, I move in to that topic instead. Others get confused of course but that is how I have always been and it has made me a better mother I think, because I follow “Gubby’s” logic perfectly, when noone else does.

She moves on, trying to calm parents down, that the echolalia is just a phase. I don’t  understand why it upset her in the first place? Then she is trying to teach parents how to teach their children communication. This part I found offensive, because I honestly think that all parents with autistic children with language problems, already instinctively know what to do. It doesn’t take a whole lot of errors before you realise what to try instead. Unless you are the father and hardly ever home. My husband seems tongue-tied all the time, using as little language as possible. Expecting people to know what he wants and thinks and that is not how any children work, not normal ones nor autistic ones. You have to use your tongue more than normal with an autistic child. You have to explain the world to them, to re-assure but also to put labels on everything. They do not understand a sad face so you have to explain why you look that way. “Gubby” gets scared of the kitchen machine, of the noise it makes, so I have to explain why I am using it, what is happening and what it will accomplish. Usually a nice cake or mashed potatoes. I have to look at him because that is the only way to see if he has understood, if he is alright and if he needs more information. This woman does not need to tell me to answer everything he says, so that he feels loved. “Gubby” always knows that I want to hear every word he says. I have to order people around him to do this though, so not everyone does what they are supposed to do. But I believe that parents do!

And to tell a parent that they must talk as much as possible with your autistic child, read to him, sing to him, is ridiculous. Every parent knows it is vital for a child’s communicative skills to start developing from the moment of birth. When you have a child with retarded speech development or very late speech development, you just know instinctively that you must up your efforts. Find that perfect book, which will make him go back to it over and over again. That book which will make him crawl up on your lap to hear the story instead of watching TV. And while we are on the topic of TV and film watching. I will not agree that it is all bad. You as a parent have the power to make it in to what it will become. You can turn the TV off if the programs are inappropriate. But TV can actually be a great teaching tool. In our house, I am always with my children when they watch TV. I multi task. I can sit and blog or surf the internet but I always keep one eye on the TV-program and one ear to the comments from the floor and sofa. All three of my boys have difficulties understanding what they are really watching and hearing, so explanations are always due. Afterwards I might have to go through the storyline again, to explain what could not be explained while everything happened. I also catch myself with having to explain facial expressions and feelings of people. But most of all, what the TV does, is help the child getting a vocabulary. “Gubby” has learned so many words from TV and as I have said, TV watching does not at all have to be a one way communication or a thing one sits and does quietly. Ours is very much interactive TV and how then can one look upon it as something bad. Yes, perhaps if the child watches non-age appropriate things, violent things or chooses to sit still instead of going out bicycling or something. But that is easily corrected. That is why there is a turn off button.

At this point, I will end this particular post. WordPress functions poorly when posts get long. Please follow me over to the next post, about 5 more things that are very important for us all to know about autistic children! :)



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