After habilitation screwed up, it was time for another round of testing for poor “Gubby”, who of course do not understand what anything of all this is about. V., the psychologist went to the pre-school and all I know is that “Gubby” made a very positive impression on her. He is a huggy child and one who is completely open to meeting strangers, so he had just run up to her and taken her hand, to lead her in to where he was working. He made sure she went where he went, during the entire visit, so she got to help him bake “lussekatter” among other things. She was very impressed and thought he was the cutest little charmer. That you just love him. So far so good!
The problems started on the 8th December when habilitation phoned me and said that my next day visit, was cancelled since the psychologist had got the flu. “What about the appointment on the 10th?”. She could not answer about that nor when the IQ-test was to be done instead. Now I really got angry. I told her, that I was in queue for the Montessori zero-class and had to let them know if we wanted the place. That it was pointless to take the place if he must go to a special needs school and that I already had an appointment to discuss the IQ-results on the 18th, so the testing had to be done by then. I had also received a time on the 15 January to discuss the results with the pre-school. I really needed the secretary to fix everything! It took hours before she phoned back and gave me an appointment on Monday the 15th. Instead of being tested on the 9th, “Gubby” went to pre-school as usual and they thought this was very odd, all this changing of appointments. They wondered how things would work out with all appointments, the head having told the headmaster and special ed teacher to show up for the 15 January, and freeing herself from the child group that day as well. I just had to shrug my shoulders and say that I knew nothing.
When we got home that day, another secretary who could hardly speak Swedish phoned and said that the appointment the 10th was cancelled because V. was sick. I asked her for a new appointment and she said it would have to wait till January. “No way! I was given an appointment for Monday, yesterday, and I need more appointments next week!”. “That is not possible!” “I don’t care! I am sick and tired of putting my life on hold like this. On the 18th I am supposed to get test results. On the 22nd there is an open house at the autistic school and I want to tell them the results. I have already accepted a place at the Montessori school thanks to your tardiness, even though I do not know if he can attend a regular school. And on the 15th January other people are expecting test results. You can’t mess me around like this. I bend over backwards to sort out babysitting and things with school. Now you better fix this. I was given an appointment on Monday. Now I need another appointment for the one we miss tomorrow!”. She did not understand how someone could have given me an appointment the day before, and asked who the culprit was. Like I had paid attention to the name! She said she would discuss the matter with the team the next day and then call me back. Well,she never called back and I got so angry. I had T. phone them and demand an appointment. After two phone calls, he finally found out that the lady who had spoken to me on the 9th, was noone of consequence, someone who did not know a thing and she had not talked to anyone about another appointment. So, I ended up with two new appointments the last week of school, on the 15th and 16th.
When I wrote up everything that was going to happen week 51, on our whiteboard, I felt very tired just looking at it all. Monday 8:30-10:00 IQ-testing and then on to the BUP nurse to discuss “Kitty’s” medicine. Tuesday 10:30-12:00 IQ-testing. Wednesday 9:00-10:00 Play observation for “Boo”. 12:00-13:00 results for play observation. Thursday 10:00 school-term-ending ceremony at Catholic church, 15:00-16:00 Test results for IQ-testing of “Gubby”. Friday Christmas party at “Gubby’s” pre-school.
So, we showed up at habilitation Monday morning, “Gubby” and I. And this was not as fun at all, which he had expected, since he remembered the fun he had had with K. He had not forgot the fun toys in the double-mirrored room that he had been allowed to play with etc. Now he had to sit by a table and answer questions and me sitting behind in an armchair, not being allowed to say a thing. Not being able to coax the answers. Let’s say, he thought it was tough, very tough and he could not get through everything needed that day. V. just looked at me and said that she did not know what to do. I told her that we had to be done by the 18th, no matter what, so finally we came up with the insane thing that D. would have to come with me on Wednesday and sit with “Gubby” while she tested him and I had to be with “Boo” at the play observation, since I can’t split myself in two. So, two children tested in two different rooms at the same time! But there really was no alternative if we were to keep the time plan.
Tuesday we were back and I felt so sorry for my little boy who he has to go through all this. And for what? What will really come out of it? On the 10th December, on the day when Malala received her Nobel peace prize for fighting for children’s rights to study and get schooling in her country, the parents of children in need, living where they could go to Stockholm, had all gathered in a mass protestation in the middle of Stockholm. They felt that it was the perfect day to point out that when they give the prize for Malala’s fight for all children to receive schooling in Pakistan, then Sweden also breaks against the UN child convention since children in need in Sweden, do not get the schooling they are entitled to. Perhaps one should look at one’s own country’s shortcomings when it comes to education for the handicapped, instead of starting to complain about what is done on the other side of the globe?! The politicians in Sweden can be outraged at what is done in that country but not what is done in their own country. Or what is not done! According to the school law, every child in this country is supposed to get to learn according to their ability. School is supposed to give them the help they need and adjust the school system to let them fit in. But that is not done! Because Sweden has decided to spend its money on other things. Instead of the schools falling under the state, so one can check up on that things are conducted in the same manner all over, they all fall under their respective councils. Poor councils will make cuts where they want to and they always, always cut the school budgets. And when they do that, the schools have no money to spend on all the children with special needs. They are forced to sink or swim. And more and more children in Sweden sink. They stay at home, because they can’t go to school. Not receiving the help they need and must have, to progress.
Wednesday, it felt like we spent the entire day at habilitation. D. walked in with “Gubby” to the last day of IQ-testing and I walked in with the counselor, to the one side of the double-mirrored room, together with a counselor in training. The counselor filmed and asked questions to clarify some things “Boo” was saying and that is the bad part about sitting behind a mirror and not in an open room, like the one “Gubby” did his play observation in, that you can’t have any contact at all with the special ed teacher. We had to tell her things afterwards. If we remembered. She had decided that one could not put “Boo” in the big play room though, because then he would not sit down and do things with her. He would have started to climb, build with the gigantic stuffed building blocks and swinging, not listening to her at all. So they had to do things in a more boring room. But he had a fun time with her and we laughed behind the mirror when they played doctor. K. is really great with kids. She acts like them and totally get in to pretend play and “Boo” really responded to this. He giggled and laughed and played along. I think he could have stayed there and played with her all day, if he could have. As it was now, we drove down to school and dropped him off there and then I persuaded D. to take “Gubby” on the bus and go home, because it was not fair for him to have to sit in a boring waiting room till 13:00 and then the two of them going with me and sit in the car till 14:00, waiting for “Boo” to get off school, so we could all finally go home after a very long day. Reluctantly D. went on the bus with “Gubby” and the latter was such a good little boy. D. is such a wonderful brother. He made sure that “Gubby” got his beanie on, his zipper closed on the jacket and then he told him how to keep his hands warm till the bus arrived, since we had forgot the mittens at home. It was bitterly cold. I stood and spied on them from opposite the bus stop, because they were so cute together. “Gubby” did not flax about but stood like a good boy beside his brother and when the bus approached, he took D.’s hand and they got on the bus, “Gubby” all excited with a big smile, since he LOVES going on a bus.
I drove back up to habilitation and sat down to find out that “Boo” had done well on the play observation but that they feel they must go and check out the school situation. He said many bad things about school and how he is treated there. He must also go and see the work therapist and the physical therapist to test motor skills but also perception. I thought it would happen soon but soon in their book is March 2015! In the meantime, he has to sink or swim, which has made me or forced me to look at alternatives to the school he now attends! And they are shocked, that I have moved forward before they have had their say. They do not seem to comprehend that there is a limit to how much one can put up with and how long one can wait with things. Sometimes one has to move fast or one will miss out on opportunities. He will not meet the two therapists till the 4th March, the school observation is not until the 11th March and the outcome of these things will not be presented until the 18th March. How can they not see this as a joke, when school ends 12th June? Three months or actually less, for the school to try to sort things out and make changes. And for what purpose? He is so behind in his school work. An entire year behind!!! When school started in January, I was given a new plan of action for this term. The goal is that “boo” by the end of the term, will have caught up with grade 1. When he is in 2nd grade now! So when he starts grade 3 in the autumn, he has all of 2nd grade to catch up on. And moving down to 2nd grade does not work because the parents of the children in that class are still wimps who scream and raise hell if someone so much as touches a hair straw on their children’s heads. An autistic child who acts out like “”Boo”, will touch those children, no doubt about it! “Gubby” is the exception to the rule when it comes to Autism. Autistic children act out, they hit and they scream because they do not understand the world! So at his present school, I have no options at all except to let him fall more and more behind. And let’s say, he is not entitled to special needs school. He does not have an IQ below 70 and is counted as high functioning. Which is a very relative term!
After the school-term-ending ceremony, I dropped all children at home and had to head back to habilitation for the results of the IQ-testing of “Gubby”. I sat down with V, psychologist, and K. special education teacher, and was given a sheet of paper that said it all. To cut it short, he is under 70 IQ when it comes to everything language but on everything else he ends up about IQ 90. So he does not have a right to go to a special needs school. And I must say that it made me depressed, because it means that his entire life will be a struggle. He will be misunderstood in school and be teased about his handicap. He will stand out among the other normal children as very abnormal and perhaps be bullied. And in all likelihood, he will not receive all the help that he will need to get through school. Because no school has the money. It would have made his life so much more easy if he had been allowed to go to a special needs school. Then I would not have had to sit and cry about his future and have to fear for his life. Because these innocent children get taken advantage of . One is not allowed to be different in this society.
The test results said “Gubby” “is a happy little boy who at both the observation and the testing tries to do his best. It is of great importance that he gets the support he needs and that one uses his strengths so that he will not encounter failure and so that he can keep the good self-image which he has. He is a boy who will have to go to regular school but who will need a lot of support because of his autism and his language difficulties. He is helped by visually clarifying strategies which creates structure, predictability and which creates an understanding of context. He needs help with finding out what he needs to do, where he is supposed to be, with whom he is supposed to be with, how long it will all last, what is going to happen next, what he is supposed to bring and why he is supposed to do things. If you adapt this for him, then he doesn’t have to spend so much time figuring out the world. Children with autism has a difficulty with imagination. If he can get help from the outside with this, he can possibly learn patience and be able to learn things and also be able to socially interact. In March a speech therapist will do language tests. The IQ test has to be re-done in one year.”
When I sat there, I felt a hopelessness come over me. I told them how hopeless “Boo’s” situation is at his school and how will I be able to prevent this from happening to “Gubby” as well? How do I protect him from failure? What school do I look at? And this is where habilitation really shows its real failure or should I call it weakness. Because they are not allowed to advice you. They can’t tell you what schools work with them. What schools will give my boys the help they need. I am totally on my own in this and can get really burned. For some reason, the Waldorf school popped up in my mind. I have not thought about this alternative for years because someone told me that they spit on religion and make children feel really bad about being religious. But suddenly I felt the need to ask about this school form. K. told me that it’s only for some people. That the child will fail the national tests in grade 3, because they focus on other things in the lower grades than pure book knowledge, but at the national tests in grade 5, they have caught up with the national average. They do a lot of crafts and art and to me it sounded like heaven, like the perfect thing for “Gubby”. So I decided to investigate further. Too bad that everyone had gone on Christmas holidays then, till the 8 January. I was forced once again, to put all questions and our lives on hold. To be continued…