24 February 2015:
4 November 2014 was one of those days I hate, when it feels like I am nothing but a hamster running around dizzy in a hamster wheel. I had to be at habilitation twice this day and in the evening at an information meeting about Special Needs Schools which in Sweden are called “särskola”. In translation it would be “apart school” because the child is more or less kept away from “normal” children. We were told to go there in case “Gubby” has to go to one, if he has an IQ under 70, and if he does not, then we need to prepare a defense speech based on facts. People are always going to question WHY he is not in such a school, if he is put in a normal school. People having no knowledge at all what goes and what the rules are. But I might save that information for a separate post, because before one gets that far, lots of things have to be done first.
My morning, started at 9:00, at habilitation with counselor and psychologist and the conversation was our third about “Boo”. But when I got there, half of the time was dedicated to “Gubby” since there has been a misunderstanding, them having started to do a PEP-test instead of an IQ-test, which is the one weighing heaviest on school choice. The psychologist had not read his files properly and had understood that he is born 2009, meaning plenty of time to do things. I had to tell her, no, he is born 2008 and if I am going to put him in a normal school, I need to know so very soon. I am not putting him in a big school where he will get bullied for being innocent and naive and independent schools have long queues. As a matter of fact I should have been in plenty of queues by now, but since they have dragged out the testing so long, I have been left in limbo. And sure, I could do as they tell me. Put him up in queues all over, just in case, but many schools will charge money for queueing and others demand that you visit them before you can put yourself in their queue. Also, it is very time-consuming checking out schools and if he is to go in a special needs school, why should I waste precious time on unnecessary things? I can’t understand how they reason and I am getting REALLY angry and perturbed at them and all the crap that goes on. All this waiting time! My child’s life doesn’t stop while we wait for the next appointment!!! I can’t hit the pause button!
Couldn’t say it better myself! But the Swedish government and authorities couldn’t care less, could they???
Finally I managed to make the psychologist understand that our case is very urgent and why should “Gubby” have to pay for their mistake? And finally we could move on and talk about “Boo”, the reason why I was there, that morning. Read the sentence on the photo again, and then listen to this: It had been decided that “Boo” should come with me, on the 17 DECEMBER, for play observation. Right! Over a month and a half, before they are even going to meet him for the first time and START checking what he might need help with. May I scream now? Things are like a roller coaster for him in school, but habilitation can not start helping him until all tests are done and they can’t give him an appointment sooner since SO MANY children in Skåne are diagnosed with Autism. It is today’s epidemic. Am I completely out sailing when my mind wanders to when I had the children vaccinated against the swine flu? 2009 I think it was. Same year as “Kitty” was diagnosed with ADHD. And before this date, my two youngest were utterly and completely normal. I am reading a book right now where it says that parents start suspecting something is wrong with their children when they are 16-18 months old. Well, I felt that my boys were normal. And who knows, people have got ill from that vaccination, among other things with narcolepsy. My husband falls asleep whenever and wherever. What if? Is it normal to sit at a psychologist after one’s baby has died and fall asleep sitting up on a chair? Or sitting in church sleeping through a sacrament meeting? He is just one BIG embarrassment so I avoid taking him with me to important things because what sort of impression does that give of us as parents, when the father sits and sleeps through a meeting? Looks like he is very interested in his children, right?
In the afternoon, I had to bring D. with me, to babysit “Boo” at habilitation while I went in with “Gubby” for his second day of PEP-testing. It was 14:30 so he was not at his most alert and he did not think the testing was very fun anymore. Now he knew where that funny chicken toy was, that he played with on Halloween. And he wanted to go in to the two-mirrored room again to fetch it, instead of asking questions. I had to try to make him sit on the chair and it was not easy. He played behind the curtain, crawled on the floor and acted sleepy. But he did fairly well when we got him to cooperate. K.understands that he uses his own words for things when he doesn’t know the right ones, and that they are often a description for what the thing does or what it looks like. One of the weirdest things she did was copy cat his movements and speech, to see if it would irritate him or if he did not even notice it. At first he was chattering away and did not pay attention and then suddenly he looked at her and said “STOP IT!”. We both had to bite our lips, because it sounded so funny.
When we were done, I just had to treat all the boys to ice cream at the supermarket. All this is so tough on them. And the boys do not even understand what it is all about! As we got home, I had a phone call from K. (the special ed teacher) who had been testing him. She had realized that she had forgot to test some things and she would go to the pre-school the next day, to complete the PEP-test there. It was not the regulars that were at pre-school at that hour, who had taken her phone call, so when I arrived the next morning, the regulars were pretty upset. Well, not upset really but a little bit irritated. They did not have time for her at all and lacked teachers that day, so she had to just take him with her upstairs, to their resting area, and do the final things up there. I had no explanation to give and the only thing I could do was apologize. I mean, I only found out myself after 17:00, when the pre-school is closed! But I guess it worked well after the initial frustration from the pre-school teachers.
What can I say about the test results that I received on the 6 November? A meeting which continued on the 19 November, so that the psychologist could get updated on what she needed to do? His curve looks like one of those curves one sees on a monitor when a person is having his heart rate monitored. Up and down in peaks!
On the imitation part, where he is supposed to repeat what someone else does, he barely reached age 4. He is 6! You have to be able to do this in order to be able to learn social behaviour and social language. Read off cues in other words. On perception, they can only test up to age 5 and he reached this. What does perception entail? Understanding one’s world via sight, hearing, senses, taste and smell. So he did well on that even though they could not test up to age 6. Strange, really. Fine motor skills was something he excelled on. There he reached age 6. On the gross motor skills, he did less good though. Barely reaching age 4, on his way to 5 years of age. But I thought he did well on everything she asked him to do. On eye-hand-coordination he reached 5 1/2 years of age. Then came the non-verbal skills, cognition. There he is on a 4 year old’s level. In this category you sort things in categories, categorize, pairing things up. I thought he did well and it said that he did well, so why those results? Finally, the last category being verbal cognition: making sounds, say words, sentences, the ability of communication by speech, where his age is 3.
Psychologist V. was told that he doesn’t know how to tell people that the tasks given to him are too difficult. That is when he starts hiding behind curtains, under the table etc. That he does best on tasks with pictures since abstract things are difficult for him. And short explanations are to prefer. A school do best not to give him long and complex tasks, but short things that don’t tire him out. Another thing I found out was that this is how autism looks in reality, some things the child can not do or do worse at, and other things the child will do just like a normal child does them. In other words, they are a nightmare to teach and things have to be adjusted for them. But only if you have IQ 70 will schools in this country do that. Takes too much from a teacher otherwise, too much preparation and less time with the normal children. But I will come back to that in later posts because this is not over yet. Not by a long shot!
I can just say this, that the Psycho Educational Profile-Revised, PEP-R test is pretty much useless. And after it was done, the special ed teacher still could not say what sort of school “Gubby” might thrive in. The results were too messy to really tell anything. This of course put me on the potty, because my only thoughts were, how do I proceed then? I will continue these posts so you will see exactly how life turns out for a child with autism in Sweden. And all the hassle the parent has to go through, most things just leading to a dead-end street. So look out for the next post on my continued woes with habilitation. I was told to be back there for the IQ-testing on the 9 and 10 December. On the 3 December V. would go to the pre-school to observe him there, in action so to speak and to actually meet him for the very first time. And then on the 18 December, I would get those test results. Not the December that I had in mind…