I am getting more and more e-mails via my blog, from people who are considering moving to Sweden for work and for Graduate Studies. Their concerns are not really pertaining to that aspect, but to the aspect of what does Sweden have to offer their handicapped children. Disabled is such an awful word in my opinion (like disabling a car from rolling or starting or lacking an arm after WWI) so I will stick to handicapped. And we are not talking about regular handicaps, like blindness and deafness. In a way, a child is more blessed if they come with that handicap, since there is a support system for that. There is an acceptance in society for that. There is no acceptance for ADHD, ADD, DAMP nor is there an acceptance for Autism. Because there are too many children labeled with these handicaps today.
If you ask the person on the street, why that is, the average person will say that the psychologists do not know what they are doing and many will say that these diagnoses are just an excuse for bad parenting. What do I mean with saying too many are labeled with these handicaps? I mean that society can no longer handle the pressure. Articles have been written on how many get the diagnosis and noone understands the epidemic we have in front of our eyes. But one thing is for sure, that the schools can not handle these children, the health care system can not handle the amount nor is there any money to give the children what they need. IN THIS COUNTRY!
I do not mind having contact with all my readers, but if I end up writing the same thing to everyone, the purpose of this blog is lost. I created it, in order for all my penfriends to get an update on my life, since I discovered that I was writing the same thing to them all, over and over again, and was always behind in my correspondence. So I will try to answer everyone’s possible questions right here in this post.
To you out there who are contemplating a move to this country for various reasons, I ask you to contemplate the following questions once, twice, three times and perhaps ten times, before you make your decision.
Question number one: Imagine yourself arriving in Sweden and your child demands instant action. Your child needs to get settled in, before you can take up your graduate studies or your new job. How exactly are you going to communicate with people when you do not know a word of Swedish? In Sweden, it has always been a fact that only the person who screams the loudest, gets care and what they need and want. The others get bulldozed. It is very difficult to fight for your child’s rights, if you do not have the language to do so.
Yes, in a recent study it was concluded that Swedes speak English best in Europe, but what are we comparing with here? Italians? French? People who do not want to learn another language and whose countries and schools are not pushing for this, dubbing all TV and offering very few language classes. You might run in to a 20-year-old in Sweden, sitting at the train station with his iPhone 6, who will talk to you in English before he runs off to his job for a computer company or to the university where he is studying to become something in media. But when you walk in to a health clinic and speak to the secretary about setting up an appointment or you have to ask at the supermarket where you can find the gluten-free food, you will get an embarrassed person shaking their head in front of you. Yes, the 20 somethings who have been in academic programs at gymnasium will be able to converse a little with you. But the people who chose the practical programs will not. They have only studied English for 8 years and might not even have done their homework. They will know the F-word and the extreme word for poop. And use it in every Swedish sentence, happily, unaware how offensive it is. But that is about their extent of English language skills.
The people you will meet at BUP, Habilitation, in schools, authorities and health care personnel, will be between 40-65 years old and since they have not used their school English since they were 19, which prepares you for nothing, they will not even be comfortable in speaking English to you. They will not know all the words and they will not understand what you are saying. To dare speaking a foreign language, you need to feel confident in it, and a Swede does not feel confident in speaking English, if the person has not traveled a lot. The school English is useless and I can just give the example of myself. I graduated from gymnasium with the highest grades, at age 19, and headed for London, England. To work as an au-pair. And when I arrived, I had no idea what people were saying and I did not dare to open my mouth. It took a long time for me to adjust, but I cursed my English teachers, who had not taught me the names of everyday items, things you need for your daily living, in an English-speaking country. Then imagine people who have not spent years in an English-speaking country the way I have. How reluctant they will be to speak your language and some will even say that “when in Rome, do as the Romans do”. Meaning, do not come here, if you don’t know our language.
And why is it so important to know Swedish then? Because when you have a child with a handicap, which can not easily be observed from the outside, you don’t get any understanding or help. EVERYTHING becomes a fight and a struggle. Life becomes totally uphill.
Your second question ought to be, am I ready for the fight? What came as a natural thing in your own country, a human right, something which came per automatic after the diagnosis was set, will never do so in Sweden. You are supposed to handle everything on your own, and if you do not and ask for help, you run the risk of ending up at social services. But say that you are willing to take that risk, because things are just too much at home, you do not know how to handle your child, you want help tools, education and so on. Then your first call is to BUP. Child- and Youth Psychiatric care. If your child has ADHD/ADD/DAMP you stay with them, otherwise they will have to send a referral to Habilitation, where the autistic children end up. And then starts the wait. For an appointment. Usually it takes months. And you get one hour with someone, whom you can sit and whine to. But as far as practical help? As my husband says, “Schnurr”. I will return to the power or lack of power they have, further down.
For a single parent, these procedures mean that you can forget having a life, because your entire life will be to fight for your child. If you come here as a couple, one person will be busy trying to get help for your child and the other person will be the breadwinner. Only, if the breadwinner do not come to all the meetings, which is the case in our family, because the breadwinner would lose his job if he was absent that much, then BUP and Habilitation will count the present parent, as a single parent. And you should be aware of that they have a DUTY TO REPORT YOU if you do not live up to their expectations. There is a proposed law in parliament right now, which wants to allow the removal of children from their parents’ care, when the children do not behave in school and elsewhere. Their bad behaviour caused by their ADHD and Autism, is going to be blamed on their parents, if the law is passed. And then we, who have children who act out and are aggressive, because of their brain dysfunctions, live on borrowed time as parents of these children. Others will be considered better fit to raise our children. And there is nothing you can do if the social system have decided to take your children away from you because you do not give them enough attention, you do not fight hard enough for them, if you do not curb their bad behaviour…
But let us not paint Lucifer on the wall, but say that you have got in to Habilitation or BUP. I have been a visitor to BUP now for the past two and a half years. My son “Kitty” got his diagnosis as a 5-year-old from what was called the base team at the hospital in Lund, and on the day I received the paper which stated that he has ADHD, the doctor wanted to prescribe Concerta. I told her to forget it and her answer was “if you can not handle things, contact BUP”. I waited four years before doing so, and read everything I could about ADHD and did things by common sense and by trial and error method. Then his teacher demanded that he be medicated. I refused BUT I contacted BUP to find out what rights I have and what rights my son has. What happened?
I was sent on a parenting course for ADHD strategies where I learned everything I already knew from all literature I had read and also by experience. So my husband got in to trouble at work for nothing, since he had to be off work during the times when I had lessons. The lessons given by BUP and Habilitation are ALL given during day-time, when I do not have baby-sitting and most people are at work. They do not have classes in the evenings because their personnel do not want to work in the evenings!
After we contacted BUP, it took a couple of months, and then the counselor at BUP came to my son’s school to inform them what ADHD means. They could not have cared less. No changes were made. An occupational therapist was sent to the school to observe and give suggestions on changes that needed to be made. The teacher told him to forget her changing anything. What has my help from BUP arrived at? After two and a half years, my son has received a chain quilt, so he can go to sleep, a whiteboard schedule with magnetic pictures, a time log and a ball pillow to sit on in school, instead of jumping up and down. That is it. He doesn’t look at the schedule, nor does he use the time log and he refuses to use the pillow in school, because then they would notice that he is different. Like they don’t already? But in his world, he does not stand out as different from everybody else.
He is now on medication for ADHD. Not on the Amphetamine drug Concerta, but Strattera, a non-stimulant, which you take every evening and it works 24 hours a day. He is also on Risperdon for his aggression, which is usually given to schizophrenic persons, but in much higher doses than what are given to ADHD children, already on Strattera. We see the nurse about once every three months, where his height and weight is checked as well as his blood pressure, and the doctor once a year. To get the drug is a nightmare since not all pharmacies have it and it is expensive. Plus you only get a prescription for one month at a time, so the child can not overdose on it or sell the drug. But this means that every month you have to go through the same nightmare, to try to get a new prescription and you only get to talk to a secretary who has rare telephone times.
Is it just bad for us? Have we fallen between chairs somehow and it would not be the same thing for you? I think all internet support groups and Facebook groups tell the story that ours is not an unusual one. It is actually the way it is. When I discussed schooling for these children with another reader, I remembered a friend in the US, who described all the help her boy was getting for his Asperger’s. And I remembered thinking, wow. Group therapy for boys where they learn to socialize and read facial expressions/body language. Special schools. You name it. Dream on, it will never arrive in Sweden!
The third question you need to ask yourself is: In a study a year or two ago, they concluded that among Europe’s ALL countries, Sweden was the worse in helping their children with neurological handicaps. They receive the least help of all! Even backwards countries like Romania was above us on the list and Greece, who is in financial ruin. What does this say about Sweden? Think about what you have around you right now, in the way of help, support, assistance. Are you really willing to sacrifice all that for graduate studies or a great job? Because while you might learn amazing things in your studies and you might earn a lot of money in your field of work, your child is more than likely to go through hell in Sweden.
Yes, you can sit and chat on Facebook with other frustrated Swedish parents, but it does not solve your situation. You can blog and vent, like I do, but it does not help my boy to learn how to read and do math, nor does it help him with bullies. There is noone to talk to. If you whine and say it is all too much to handle, they fill out the papers for social services! You should in their view know how to cope, innately. And they are only looking out for the child, not for your wellbeing. But I would not say that they are even doing what they are supposed to do for the children, since they have no power to do so.
So, the question dealt with are you willing to step in to the unknown, or shall I say back in time, and forego all the care and help you now have for your child?
Which brings us to the big question all of you have: SCHOOL for my child. One mother asked if her son would be allowed to go to a special needs school because that is where he is now. I hope she does not mind me bringing up her case like this, but it is to illustrate a point, so I hope she will forgive me. In her case, her boy is acting out badly but is smart. In the US you are sent to special needs school when you behave poorly, if I have understood her right, because that is how her son ended up there. And it is a good thing. People know what they are doing at such schools, they have the patience needed for autistic children and the children get the love and respect they deserve. I had to break her heart that there would be no such thing in Sweden for her son.
In Sweden, the average mother is home with her baby for the six first months and then the father is home for the other six months. If the couple can afford it. In our case, I am home all the time and my husband could only be off for the two weeks after the baby was born. His paternity leave months have saved the state some money, since he has never been able to use them and the state did not have to pay the 80% of his pay at all. Then the parents put their baby in daycare where the child is till it starts what is called zero class. But daycare is an ugly word in Swedish so it has been called pre-school for the past 26 years at least. But it is what it is.
Zero class is started the year you turn 6 and is an in-between state, between school and pre-school. Some schools have made it in to a regular school year, because they do not know how to do things differently. Other schools use it as a play year. And yet others do a little bit of both. The year you turn 7 is the year when you start first grade. But with autism, you usually have so many problems, that the ages when others do things, will not suit you. My son “Kitty” with ADHD, who received an autism diagnosis as well, on the 18 November 2015, started zero class one year late, because his speech was late, he is born in the end of December and he could not sit still. My autistic son “Boo” started zero class when he was 6 but he is now doing second grade a second time, since he can not read, nor write nor do math, nor stay in the classroom to learn things. There was no way he could go on to third grade in that condition. My son “Gubby” just started zero class in August 2015, at the age of 7, because he has severe language problems and is “behind” in his development. He is the sweetest little cutie but is more on a 4-year-old’s level than a 7-year-old’s.
You go to school for 9 years, if you do not count the zero class, and then you choose a program for gymnasium. There are tons and tons of programs to choose from, a regular jungle, but when you have settled for one and have been accepted, you look at three more years of schooling. You graduate in June during your 19th year on Earth. Then it is on to University or unemployment. For the lucky few, you can actually do military service, but that is not an option if you have autism or ADHD. Nor can you become a police officer.
The average person, will sign the papers about their child’s future school, when they arrive in the post box. They have had their child in the day care which is situated the closest to their house and their children will go to the council school closest to their house as well. The child will take off on foot or by bicycle to school each day and after the school hours are over, they will attend after-school-daycare which is held at the school somewhere. A few are latch key kids.
Some time when I was living in the US, the Social Democrats lost power in Sweden and the right-wing parties took power instead. State owned companies were sold out and while the school system and the funds, had fallen under government before, it was now transferred to the individual councils instead. Why am I bringing this up? Because in the 1970s, Sweden’s school was considered the best in the world, and a year or two ago, Swedish politicians got a nasty wake up call, when they were informed that Swedish school is now one of the worse in the world. They can’t understand why, but I can say this: When you decided to solve your financial problems, by cutting the money from the schools and health care system, you can’t expect to have the best care and school anymore. You do not get there by a miracle but by hard work and by spending money.
That is the situation we are looking at today, when our autistic and ADHD children go to school. Some councils are poor, some rich. Where are you going to conduct your graduate studies? In a rich council or a poor one? Where are you going to work, in a rich or poor council? Because I can tell you, it is sure going to affect your handicapped child. And I can tell you this, that the poor councils put schools very far down on the list of places to spend their few coins on.
I can not say what goes for councils other than my own, but from what I have heard from parents who live in other councils, the situation is pretty much the same where ever you live in Sweden, when it comes to what sort of help your child can get, with small variations. But I will for the most part continue telling what goes in my council, that of Lund, the famous University town with lots of international students.
We live out in the sticks. Not in Lund major in other words. But sticks and sticks. 9000 inhabitants, four schools with one of them containing a high school. The latter was burned down a couple of years ago, by a boy with DAMP, who is famous all over the village. His father is a police. NICE! These four council schools are under all critique. I would not dream of putting one of my children in one of them and it has always been like that. All parents who have children in the schools, warn people moving in or contemplating changing schools, “Do not put your child in my child’s school! They can’t teach in the afternoons because the children scream and behave so badly”. The school which is called the village school, has a headmaster who do not care at all about any kind of diagnoses. One mother told me that her autistic son, had to sit in a class with 50 pupils in the afternoons. He could not handle it, so she and her husband had decided to sell their house and move out of the council of Lund.
When I was looking for a school for my youngest and for “Boo” to change over to, I called one of the other schools’ headmaster. She told me verbatim “my school is for normal children who will sit still in their desks and learn. I can not give any child a full-time assistant, the best I can do is give them a couple of hours a week with one”. I think we all know and understand that an autistic child needs a full-time assistant if he or she is going to be able to go to main stream school. Too much happens and goes wrong otherwise. Habilitation has told me to have the headmaster reported because according to the law she is not allowed to say what she said, but the law is one thing and what is practiced out in the council is a totally different matter. The parliament can sit there and write a law which says that every Swedish child should be allowed to go to school and learn according to their capabilities and that things have to be adjusted for them to be able to do so. But in reality, there is no school in Sweden that can afford that and uphold the law. They break the law on a daily basis at a majority of the Swedish schools.
In Lund’s council, my village has been determined a dying one, so they do not want to spend any money on it and in it. When we moved here, only 7000 lived here and it grows constantly, new houses being built and young people moving in having babies. But Lund has decided to use the money for a new adventure swimming pool and to install tracks and trams around the town. Against the inhabitants wishes. Most of us would have prefered money for the schools instead and for the health clinics so one actually could get to see a doctor when ill. But that is how it is, the councils now choose what is more important to spend money on.
If you do not want your handicapped child in a village hooligan school or in a council school with a bad reputation, what then? Well, you can wish for a good council school but the council will decide where there is room for your child. So your only other option are the independent schools. One mother asked me “Are there private schools in Sweden?”. Yes, there are two private schools to my knowledge. The students who go there come from the Royal family and extremely well to-do families. The schools have had a lot of publicity since the bullying is going overboard, the 9th graders forcing the girls to walk in front of them naked, the younger waiting upon the older ones, classic private school attitudes that one recognises from films showing such things in Britain and the US. A behaviour which does not fit in with Swedish values at all. All this said, the schools are also in locations far away from the public eye and are boarding schools. I would not dream of putting my handicapped child in such a place where the atmosphere is not that of tolerance, quite the contrary.
No, we have independent schools which one probably would classify as private in many countries, since there they would have to pay for such schools. In Sweden you do not pay for these schools but it also means requirements from parents and that they can do a little bit like they please, at them. To make sure your child gets in to the desired independent school, you should enter them in to the queue upon birth or as soon as possible after that. Because the queues are long and the schools do not want to get too big. You can be lucky and slip in on a banana peel, when there is an opening occasionally and noone to fill the slot, but it is not something you can count on happening.
You ask why everyone does not want to put their children in these often calmer and smaller schools? Because people are comfortable, they do not want to drive their children to school. And they do not want to sacrifice of their own free time, which might be limited in the first place, to go and do garden work, mend things broken at the school, clean the school, build things etc. And some are just plain conservative, they went to a council school so why should not their children?
I have a lot of experience from the independent schools and if I am going to be 100% honest, I might as well admit that there is no perfect school. Every school has a backside to it. You just have to pick the least bad of them all and hope for the best. That is how I have ended up this year with my five still-in-school-children, at four different schools. And I can definitely not recommend that. I managed to get “Boo” in to a Waldorf school because they had one opening for his year and he has been lucky I should say, because his teacher has taught an autistic boy before, for 9 years. He is also lucky, because his headmaster has the energy to fight for extra funds, which one can do, if one has taken on a handicapped child. He has to fight though, even though there is so much proof that “Boo” is a handful and has to have a full-time assistant. They declined the application in the first instance and he has had to contact lawyers and go to a higher court. Not all headmasters have that courage or energy to engage themselves in their jobs, full force.
But there was no room at the inn, so to speak, for “Gubby” and “Kitty” at the school. So “Gubby” is going to a Montessori school in an entirely different village. The only reason he got in there, and the rest of his class mates, was because they have been going to the Montessori pre-school, which is part of that school. They did not accept any outsiders this year, from the outside queue. So no room for “Kitty” at that school either. The school got extra money for “Gubby”, but they decided to not hire an assistant for him after all, even though he needs one. Instead they have solved it by the school’s music teacher spending Monday-Wednesday with him, before lunch, and the after-school day-care teacher spends Thursday and Friday mornings with him and all afternoons. He gets out of school at 12:30 which is when the others go to after-school-day-care. Which is something which does not work for an autistic child, since in that place, there is no order what so ever and total chaos. The noise level itself is overwhelming. I would never do that to “Gubby”. He would spend the entire time flaxing about, worried sick and being insecure. Noone would be able to be with him either. That is not how after-school-day-care is set up.
“Boo” has to be fetched at 13:45 when his school is out, for the same reason and his assistant and the special ed teacher told me after just a week or two in school, that they were relieved that he was not in after-school-day-care, because it would never have worked.
“Kitty” is at a Catholic school and heaven knows why! I have tried to get him in to a good council school in Lund because nothing can get worse than what he is in right now. But grade five was full, so you have to enter a queue. I tried Montessori and Waldorf and they are full. He is stuck in a school where the only credentials that you need to get employed, is that you are Catholic. Doesn’t matter if your Swedish is so poor that you are the only one who understands it. And the headmaster does not believe in diagnoses. So he doesn’t do anything. He knows nothing about ADHD, nothing about autism and that is the way it is going to stay. His personnel, know nothing about either handicap, and that is they way it is going to stay until he takes charge, hires in people who will educate his teachers, and the school starts listening to what BUP and Habilitation have advised them to do. That will happen in the millennium. Not now! I have been banging my head so bad trying to get them to educate themselves and make changes for “Kitty”, for six years now, and it is totally pointless. I have even stopped being nice when the headmaster phones me and tells me that “Kitty” has kicked someone in school, that he has taken someone’s jacket and have thrown it up a tree and so on. My new answer is “Well, if you had had enough teachers out on recess, this would not have happened. I have demanded that for years. And you know that my son is a nuclear bomb ready to explode, so one teacher should keep an eye on him in particular. I have done my job, I have put him on medication and I have asked for an assistant which you abhor, so there is nothing more I can do!”.
Because this is the reality in Swedish schools today. Your child has to go to mainstream school unless Habilitation has tested your child and your child gets an IQ under 70. THEN and ONLY then can your child get the school it needs, a special needs school. You only have mentally retarded children in those schools today. My youngest son has IQ 50 when it comes to everything language. BUT not in the other fields. He looks like an EKG curve on the IQ test and has landed on IQ 90, when one puts them all together. And you have to be under 70 on everything. Autistic children rarely land there though. They land like him and his brothers. An uneven curve. Low or average IQ but still with LOTS of problems. Like my sons’ special ed teacher says at Habilitation “They are called high functioning but they can’t function themselves in our society, but need lots of help.”
A help which they for the most part can not get. Habilitation and BUP, can go to the schools and they can suggest and advice, but they can not force the schools to spend the money. And the schools will not spend the money if they can avoid it. Things got so bad for “Boo” at the Catholic school, that he was never in the classroom. He learned nothing. He was bullied and called stupid by the other children. He was in constant fights with other children. I had daily phone calls and complaints about him. They had a psychologically troubled woman working at the after-school day-care, who had been placed there for free by the unemployment office, to get what is called work training, to be his assistant. The last term she refused to go to school and look after him. So they brought in another person they did not have to pay, who shook him, swore at him and was generally unpleasant to him. He was a student who just wanted some cash for his holiday. “Boo” was a wreck the last weeks of the term and I was so grateful to get him out of that school. So, to put your child in an independent school is not always the best thing either. Some of them are just nightmares! And they do get less funding than the council schools, since some parties in Sweden, want the phenomena of independent schools, to disappear. They have got in to their heads that only rich people can afford to have their children in these schools and that the most solidaric thing is that all children get equally bad schooling. Noone should have a chance!
But you haven’t said what sort of help you get at BUP and Habilitation, some might say now at the end of this post. It is because I can not say that they have helped me with this or that. “Gubby” got his diagnosis of autism in March 2014. We did not get to meet anyone from habilitation until september 2014. That is how long that queue is. About a month went by, before I got to present my child to them, him never having set foot there yet, and then he got to go there for a play session, which is part of their testing procedure. To see how bad the handicap is. Not until December, a couple of days before Christmas, did the IQ testing take place. By then I was hysterical, since Montessori wanted to know if he wanted a place at their school or if it could be given to an outsider. Habilitation had sent me to a meeting about the special needs school, since they thought he would end up under 70. But then the testing took place and he landed on 90. So that meeting was wasted. 4 months went by and then the speech therapist tested him. I got those results in June. And the promise of getting to test out apps he can use, to help his language along. That appointment was at the end of November this year. So the first practical help we received with the apps, that we have to pay for ourselves, was 1 year and 8 months after he got his diagnosis. On an average, this is how long it takes for every little help you are to receive. Because too many children need help.
Like I said earlier, my son “Kitty” has received some help tools which has not really made a major difference in his life, thanks to him objecting to using them or because he does not have the patience to use them. As far as school goes, BUP has not been able to influence that at all, so all meetings with counselor and occupational therapist has been wasted time really. It remains to see what will happen when he now has to start going to Habilitation as well. At least I hope they will be able to explain his autism to HIM better than the idiot at BUP did, wo had my son in tears and looking at the psychologist with murderous eyes.
When it comes to “Boo”, he got his play session pretty quickly, in December 2014, after getting his diagnosis on the 11 September. I know, what a date! He then was tested by physical therapist and occupational therapist in February 2015 but we did not get the test results from that until May. We were promised a weighted pen among other things. He got the weighted pen in December 2015, ten months later, and then it was not his own but the occupational therapist’s personal one, since she doesn’t know what has happened with the order. He also received a book like “Gubby” received back in September 2015, which is just like the ADHD whiteboard with coloured days. You write down or draw what will happen every day in the book. (You can see pictures and read about the tools, in a post I wrote years ago.) He also got a time log, since he has no concept of time. Just a little example of how it will take months on end to receive tools promised. His IQ testing took place in June 2015, in other words 9 months after his diagnosis.
“Boo” has motor problems but gets no physical training per se, except for what he gets when out on recess. He gets to go swimming at Habilitation three times per term, the first times were in the spring 2015 and this past term, it did not become until in December. The weighted pen will help him to write, since he finds it so difficult. And now in January, we have been promised to get an appointment to try out a handicap keyboard for computers, since they have decided to let him be more on a computer, unless the task is writing in itself.( Something which was decided in August!) Otherwise they can not get him to work in school. He can’t use his hands that well for things.
In conclusion, I would like to say, that making a move overseas is a very big thing. I have lived in England and the US myself and know what a big change that was for me and I have seen how difficult it has been for my American husband in this country. To move with a handicapped child in your luggage so to speak, is even more of a major thing. You have to forget everything you are used of, from home, and accept a new way of doing things. For a child with ADHD or autism it will be a major trauma to move to new circumstances and the decision to move should not be made lightly. You could end up with people around you, who will help you and bend over backwards for you, but realistically this will not happen. You will enter a nightmare without end. One always have to look at the pros and cons with every decision, but as a parent to a handicapped child, one has to look at decisions in another kind of manner than other people. Am I doing this for selfish reasons? Is this the best for me or for my child? What will my child get out of this?
It makes me think about how my little “Gubby” has started zero class this autumn and is getting invited to all these Birthday parties. When the first invitation arrived I went in to shock. Because what does one do? Yes, it is very sweet of the parent to not forget him and for the child to want him there as part of the class. But what would it be like for “Gubby” to go to the party? He does not understand what a Birthday party is. That it is somebody ELSE’S Birthday and party. That he is not the main figure. He does not know what the routine is. That one says Happy Birthday and gives the present to the Birthday child. He does not know that one sits down to eat food and then cake. He can not understand the rules of the whispering game around the table. He does not understand that when in someone’s home, one must ask where the loo is, when one needs to go. That one must go to the loo when the bladder is full and not hold on for King and Country, just because one doesn’t know where the loo is or mamma is not there to wipe. He does not understand that after the food, there are games that everyone is supposed to take part in and follow the rules. Because he does not take part in games and does not understand rules. In other words, a Birthday party is not really a fun thing for him. It is fun for the person who is celebrating and for the parents of that child, who see their child having fun. But for my child, it is not fun but just a bunch of confusion and stress. He will react with flaxing his arms and go in to his own world. He will smile his Chinese smile and be cute, but he would have been calmer and more content at home. I have told all parents that we appreciate the invitations but at this point in “Gubby’s” life, we are abstaining from bringing him to Birthday parties, since he does not understand what they are all about. Maybe he never will. And that is what life with an autistic child or one with ADHD is like. You have to abstain from a lot of things in life. There are places where you are not welcome. There are activities that you can not go to because your children will flip out. And yes, it can feel unfair, to always be on the sacrificing side, but on the other hand… Noone forced you to become a parent. When you make that child, you take a risk of the child coming out with a handicap. And just like you go and buy help wheels for your child’s first bike, you have to help your handicapped child with everything it needs to succeed, even if it is way more than a couple of training wheels bought easily in a shop. You might never receive the freedom to do what YOU like, depending on how handicapped your child is, but then that is the life you are supposed to have on this Earth. Obviously you will learn what YOU need to learn, by it.
To all of you with questions, I hope that this post has helped you on your way to an intelligent decision. To have a child with autism or ADHD in Sweden, is tough. I can not lie. You have everyone against you. It means a life filled with tears, but when that child cuddles up to you and tells you that he loves you, you forget about all that. If you have more questions or feel that I missed something, please let me know and I will either answer in a personal e-mail or on the blog. I do not profess to be an expert. I can only tell you what I have encountered in my life so far with a just turned 12-year-old, 9 year-old and 7-year-old, all of which suffer from autism and one having ADHD on top of it all, like one handicap was not enough for a human to carry. (I have four more children beside them, by the way.) Other parents will have other experiences no doubt, but I can promise that all of us do the same head banging on that brick wall and we all feel the same frustration. Whether you will find Sweden wonderful and helpful or not, totally depends on what you are coming from. If you come from Syria, Sweden will seem like paradise, for the first couple of days at least. If you come from the US, you will see what a difference there is between living in a super power and a small country.