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!


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