Post written Monday 23 February 2015:
We live in a council covering all the villages around a University town in southern Sweden. So it is quite shocking how little this town and its council, care about education and the well-being of their pupils. How little they have to offer and how hard it is to get help when your child is neurologically handicapped. Today I had a meeting with habilitation and LSR, the resource center for our council. To talk about schools available for my two autistic sons. Habilitation was panicking, when they realized that we are actually making some decisions here without consulting them. Or rather us being fed up with waiting for test results and for advice. They think we can push the decision in front of us for however long, but for all independent schools, there is a long queue. And as for now, we are in a deep pickle. There is room for one boy at one school and room for another boy at another school and what about “Kitty”? There is no room for him anywhere!
Habilitation feels that it is insane to have the children at different schools, but what option do I really have? None. I know I am creating yet another nightmare for myself, but I don’t do so intentionally. I am trying to do what is best for my boys, myself always having to come second. I sat down with the psychologist, special ed teacher and woman from LSR, and the special ed teacher asked me to present myself and my boys and what is the problem with school. She had one major question for me and that was why the scholastic bit does not work. Habilitation declared that they can not test for dyslexia nor dyscalculia. But I asked why they did all these tests on “Gubby” and not on “Boo”. Because I have to sit at the headmaster’s office and say that my child is like this and this and needs this and this, but it carries no weight, without documented proof that he has this and that problem.
LSR of course thinks that council schools are much better fitted to take care of children with special needs, since they are big and have the budget to buy in LSR’s services. But I informed her what the headmaster told me at the local council school, that her school is for “normal children who can sit still in a desk.”. That she has never offered a full-time assistant to a child. That at the most, she can offer a couple of hours with an assistant and maybe a little bit of help from a special ed teacher. In other words, her school will not welcome my boys and they will not get any, of the help they need.
LSR suggested I put both boys in a council school in our neighbour village, since part of it is becoming a special needs school. So if they need that in the future, they would be at the school already and the transition would not be so great. Habilitation expressing that “Gubby’s” IQ might not reach above 70, next time they test him. His language being IQ 50. News to me! So we are going to be living in limbo for years to come! Not knowing one way or the other, what the boys will need in years to come. What I can say today is that I am not very keen on that council school at all. Then I would rather test Montessori for zero class and then hope and pray that there will suddenly be room for “Gubby” at the Waldorf school, when it is time for him to start grade 1, in 2016.
She also told me about this autism group at one of the council schools in town. A nice little group of 6 students, who is an integrated class of 1-5 graders. Only problem being that their IQ is really low, while they at this village way south of here, have the same kind of group, but with high IQ students. I don’t know what “Boo’s” IQ is, but I doubt he would end up at the lower end like “Gubby”, and that would be pretty terrible for him to sit in that group in town! Although I guess it would be a boost to his ego, to be smarter than all the others. Not until the end of the meeting, did I find out that you can’t just ask to go to that school and group! No, the headmaster at “Boo’s” school must write a letter to LSR, stating that his school no longer can handle “Boo’s” autistic problems and THEN he can go to that school. Sorry, but the headmaster will never ever admit that, since it would mean loosing “Boo’s” school money. Every pupil is worth a lot for the schools. One pupil quitting, means that the school has to make cuts somewhere. So back to square one. And of course they do not offer zero class at all, in that group!
As I see it, and as most parents with children who have neurological handicaps also see it, the only option we have, are the independent schools and then only the ones who actually are willing to spend money on LSR or whatever they call them in other towns and councils. I know for a fact, that Montessori does take help from them, they are not too proud and they apply for all the money they can apply for. I believe that Waldorf does the same thing. But if they get rejected, they try to solve the problems best they can, on a small budget.
The LSR boss told me that the independent schools have dug their own graves, since they want small classes and therefore doesn’t have the money to spend on children with special needs. I told her that my children’s school would gladly have bigger classes, but they can’t get new pupils, the parents taking their children away from the school rather than starting them there. The Waldorf class which “Kitty” would need to go in to, if we decided to move him, has 25 pupils and have no more room. According to the teacher in the class “Boo” would go in to, the number of pupils in the class is somewhat decided on if they have children with special needs or not, since that will require more of the teacher.
According to LSR, which I found very interesting, the independent schools actually receive a higher amount in school money per pupil, than the council schools. So there should not be any excuse for them not spending any money on “Kitty” and “Boo” at their present school. Priorities, in other words!
We also got in on the topic of “Boo” acting out and parents getting angry. LSR suggested that she come to a parenting meeting along with habilitation and explain the situation to the parents. But what is the point if we must move him? Then it is wasting their resources and have to be re-done in the autumn at the new school. But otherwise I like the idea. I am all for informing people about my son’s handicap, so they know that he can’t help his behaviour and maybe will be a little bit more understanding towards us parents. That we are trying to do our best, even if it doesn’t always show in his behaviour or language. Information is always better than unfounded hatred!
In the end, the only conclusion we could draw was that “Boo” needs extensive testing, so we can find out what his difficulties really are. And so that his new school can prepare for his arrival in the best manner. And that there is no alternative at all for “Gubby”, except zero class at Montessori. LSR suggested that he goes straight in to grade 1, at some other school, but that is not an option when he has IQ 50 language wise and he doesn’t even know the colours yet. I am glad that the psychologist backed me up on that point. The council has nothing to offer on zero class level, which is why she suggested that. Well, maybe it is time to look over what they offer then, isn’t it? You can’t tell a parent to put her child in to a class he is not mature enough for, just because you have no other easy solution. Then it will just end with the child having to re-do 1st grade, because the child was not ready. Plus the child will have a year of hell, because the child understands absolutely nothing what is going on and can not sit still. And of course teachers do not appreciate children who do not sit still when they are supposed to. Noone is going to scold my sweetie for not sitting still, when he can’t help himself. As far as I have understood, all autistic children have this desperate NEED to move, whether they jump or “flax” about, like my sweet pea does!