Originally written 24 February 2015:
Today it was time to go to “Boo’s” school for his developmental talk. I had been given a task by habilitation to find out exactly how bad it is, if the school recommends him re-doing second grade. It was with trepidation I went, because it is a touchy subject to bring up with a school who can’t afford to lose students and with a school which looks down on all other schools, not seeing any problems with its own. But I had to know, in order to make a final decision on what to proceed with.
According to his teacher, during the first part of the autumn, he was pretty calm, and actually started to sit in on class presentations and social gatherings in the morning. But towards the end of the term, he started to walk out and not giving the subject nor the presentation a chance. She said that it feels like he is so afraid of failure, that he will not even try, in order not to fail. And part of the problem being that he is really disturbed by the environment. He can not even work in the room next door of the class room, because the noise reaches him and there is interaction between the two rooms. He can’t get the peace he needs and it is difficult to get him to start doing things and keep him going. He is too easily distracted. Now they are going to try for him and his assistant to go over to the new after-school-care rooms, which will be used till the school’s flooding problem is solved. (But she has only used it as a reward scheme, a carrot for him to work!)
It was decided last autumn, that he must go in to 1st grade, so he can start catching up on what he missed there. But he doesn’t always go in there when he is supposed to. The reasons we do not know, because when he does, he likes it since they are on the same level as himself. And I guess that teacher handles him very well in a calm manner, according to the teacher. (Difficult for me to believe, when she has threatened with foster care! True, he had run out in to the street, when both classes were at the cinema, but still.) But there is something which makes him refuse to go in there on certain days, and while it might be legit reasons if one managed to get him to explain, noone takes the time to find out.
He can’t be present at the social gathering in the morning, since it takes too much effort from him. He and his assistant sits down to have breakfast instead, in an empty cantine, and go through what will happen during the day. This have turned out to be the better alternative for him.
The half hour with the special ed teacher has proved meaningful, because he thrives with one-on-one education. It is peaceful in her room and they sit and write sentences about pictures. But he still is a whole year behind in Swedish and Math, which will cause big problems in grade 3, since much is demanded in grade 3, there being national directives for what one must have achieved by then. As far as education goes, he needs to re-do 2nd grade because he is too much behind to proceed to 3rd grade and in Math, he is even further back than in Swedish. Both of us feel that he needs to be tested for both dyslexia and dyscalculia. But that is not all, he needs to be tested to see why he can not sit in the classroom and listen to instruction, group presentations and so forth. Why he just wants to run off. What one can do to help. His self-image is really poor because he has failed so many times. Or because he sees what others can do and he knows that he is not there yet? It would not surprise me if certain mean elements in the class, have also laughed at him. Wouldn’t be the first time that they ridicule him over things.
We talked about habilitation not really being that helpful. That the only ones who could help and direct the school with ideas and teaching methods, is LSR. (The resource center for schools in our council.) They have the people who are experts on autism and can educate personnel. The problem is that it costs to hire them in and the headmaster at my children’s school, has so far refused to seek any help from them since it costs. So, habilitation will go and watch “Boo” in action on the 11th but what is going to come out of them doing that and the physical therapist and work therapist testing him on the 4th? I suspect that things will just hang in the air. I am supposed to push “Boo’s” pause button till they make up their mind about what they can help with. I suspect that they can’t help with anything, since the school is not willing to seek professional help. And so far, I have not received any help what so ever when it comes to “Gubby”, from habilitation, so why would it be different for “Boo”?
The thing that worries me the most about changing school for “Boo”, is the fact that his classmates have gotten used to him. He doesn’t have any friends though. Not in any of the classes, even though he during the autumn played a lot with children in the zero class. But some of those children are now scared of him, as is one little boy in 1st grade. They don’t understand his unpredictability, so it scares them. When he and his assistant had baked a cake for the class, he came out happily to the car and said “My classmates want to be my friends now, they no longer hate me!”. I wanted to tell him that it was because he had made them cake and that soon things wold be back to normal again. But I did not want to be a party pooper. His teacher had reflected on this as well and had felt close to tears, just like me, since the situation is the way it is. It really isn’t fair to force autistic children to go to school with normal children, because the normal children treat them so badly, that they lose all self-confidence and start looking at themselves as monsters. “Boo” can’t understand why noone wants to be his friend and why they all dislike him so much. I doubt it will be better at a new school, but can it really get worse? At this school he has had to face bullies. People are mean to him, including personnel. And he has learned to say the most awful things.
The teacher brought up that his language has turned really foul the last couple of months. When he gets angry, he uses swear words and genital words. Since we don’t use them at home and I don’t let him watch programs on TV with bad language, he has got those words from the association with the six-graders and others at the school. There are elements in the 6th grade class, who really should end up on the desk at both BUP and social services. All those who think that a Catholic school in Sweden would be a nice thing to go to, think again. The pupils behave worse than at any other school. And I have never ever heard so much swearing before! We discussed his language a lot and it is when he is in affect that he uses it. I can imagine that he is so upset, that he doesn’t know what to say or how to handle his feelings, so the words coming out are inappropriate and offensive to a lot of small children, who haven’t heard them yet from the older grades. Unfortunately “Boo” associated a lot with the boys in 6th grade about two months ago, since he has poor judgement and very much wants to be approved of. They think it is fun to get him in to trouble and trick him, so they can laugh at him behind his back. One of the reasons I want to move him to another school is, so he will get away from those rotten eggs. I have forbidden him to go near them, but… Everyone just thinks that “Boo” needs to learn how to show better judgement. He might never be able to do that! HE must change, but that is the problem with autism isn’t it, they can’t change because they can’t help the way they are! And for the school to refuse to see the problem behind the signs, well that in my view is really bad, since the fact of the world is this:
It is time to wake up and change the world, so that these children fit in! Budgets need to be altered. And these children must be allowed to succeed in school and not just face failure. And if it has to be, if parents can’t teach their children that there are all kinds of people in this world, and that different is not bad or dangerous, then these autistic children need to be protected from the narrow-minded, really dangerous ones! Autistic children did not ask to be born with their handicap!
What will I do next? I will be able to tell habilitation that he has to re-do 2nd grade, that is for sure. And I can tell them that he spends less and less time in the classroom, since he can’t handle the situation in there. Question is, if he will be able to do so at any school? And how can he ever catch up to his peers? I look at his adorable baby pictures when I thought that he was the loveliest little boy and that he was normal. What on earth happened? How can a child act completely normal till the age of five, and then turn around and suddenly be autistic? Life really is a big mystery! And it breaks my heart, since he was so happy back then! She was my mother’s favourite grand-child. What sort of future will he have when he can’t be around other human beings?