Wednesday, January 31, 2007

My story about Autism.

This is my story about autism and how it has affected and still affects my daily life and that of my son Zander.

Zander developed like a normal baby. The only thing that worried me a bit was his sleeping problem. He was awake most of the time and from early on he just had little naps.
I started to worry more when he grew older and wasn't listening to me. I was babysitting his 6 weeks younger niece Steffanie and I noticed that she was reacting and responding to my requests totally different than my son. I had to tell him over and over again to stop but he wasn't listening at all! And he was hitting and scratching Steffanie very often! He was 2 years old when a childtherapist came over to observe him, Steffanie and me when we were together. Her conclusion was that he had a choleric temperament. She gave me some directions to cope with his temperament and his needs. Nothing changed however! I got him of the scratching but then he started to bite her.
At the age of 3 somebody came over to videotape him and me. This guy once said that this kind of behaviour was typical for hyperactive kids. He didn't mentioned ADHD, just hyperactivity. We had to stop videotaping because something traumatic happened in my life and Zander and I went away for a couple of month. We found shelter in a religious community in the South of Holland. It was great to be there. Zander was taken care of by some really nice and competent people while I was trying to come to terms with the pain caused by this traumatic event. For the first time I was taken seriously in my worries about my son's behaviour. Their advice was to go and see a children's psychiatrist when we went back home. Unfortunaly we had to wait for more than 8 months for an appointment!

At 4 years old Zander went to kindergarten. I noticed it was too much for him to go all day, so he only went from 9 till 12. But than his teacher started to complain about his behaviour towards the other children. Nobody wanted to sit next to him or play with him. When I brought him to school in his classroom I already had noticed that children started to cry if they saw their chair standing next to his. I felt terrible! He was never asked to play at another kids home after school (that's really normal here in the Netherlands because there are a lot of SAHM or mothers working part-time).
The children in our street were also complaining about his behaviour and a few times mothers came over to our house to complain about my son. I decided that he couldn't play on his own outside our garden. Again, it is very normal to leaf your kids play in your street on their own especially when you live in a small village like ours. The older kids are watching the youngest!
This was really a dark period in my life. My family (and me too) didn't understand what was wrong with my son and they blamed me for his behaviour problems. A single mom huh!
Zander and I moved to my birthvillage when he was 8 months old, after his father and I had split up because of his problems with drugs. Friends I had in the past all left the village so I had to find new ones. But with a kid like Zander it isn't evident to meet other people. So I felt really alone and depressed!

Because Zander was looking so normal and was talking and learning very fast (he could read words like busdriver, firetruck etc. when he was 4) he really puzzled me. Autism never crossed my mind because he wasn't flapping with his hands, toe-walking or any other of the symptoms for autism. So again I asked for help and another lady came over to our house to see what was wrong. At the same time the teacher started to complain more and more about his behaviour in her classroom and asked me to put him on some kind of medication otherwise Zander would be expelled from her classroom. Finally we got the appointment with a children's psychiatrist. He was almost 5 years old when the childrens psychiatrist told me that Zander was probably affected by autism, she saw symptoms of PDD-NOS, but she wasn't sure. Her advice was to bring him to a special kindergarten with a medical staff. Because there was no place available he had to stay another 6 months at the school in our village. Because of his behaviour problems the psychiatrist prescribed Risperdal (I wasn't glad about it, but I was forced to give it to him, anyway that's how it felt at the time) so that he could stay at the school in our village awaiting to be placed in this special kindergarten in a village nearby.
When he went to the other school the people over there were sure that he wasn't "probably" affected by autism but they were sure it "was" autism. So again we went to see a psychiatrist and this time (with all the information the special kindergarten school could provide her with) he was diagnosed with PDD-NOS.
In the mean time I had stopped his medication because of all the side-affects. At the age of 5 he was talking about death and there was nothing left of his bubbly personality.
I bought a computer and went on the internet. That's where I found a lot of information (all in English) about alternatives to even cure autism. And then I found out about a Dutch Yahoogroup about research on autism. They provided me with information about specialists here in Holland, diets, supplements, etc., etc.
So we went on the GFCFSF-diet, took all kind of different supplements, we both did AIT (I'm also very sensitive to sounds) and we went to see a therapist for bio-resonance (to see if there are allergies for certain kinds of products). Zander also went to see a sensory therapist. He taught me the brush and push-technique. I tried to brush my son over his pj's and to push on certain parts of his body but he didn't like it at all! He just couldn't stand the touch and the pressure! He was (still is, but less) also very sensitive to certain fabrics. Jeans, wool and other rough materials were out of the question. He wore mostly soft cotton pants, cotton t-shirts and fleece or soft cotton sweaters. Shoes were also a problem. Several times I bought him shoes that he approved of in the shoeshop but refused to wear after he had had them on for (sometimes) just a couple of hours because they were hurting him to much. A few times he already had went outside with them so I couldn't return them.

When he was 6 he had to go to a special school for kids with behaviour problems and at the same time he went in day-therapy after school 4 days a week. After a few weeks of observation the psychiatrist of that centre told me that Zander had an extreme form of PDD-NOS (maybe even Asperger), ODD and also symptoms of ADHD. Zander had a marvelous time in this centre. He stayed for 18 months (normally a kid stays for 6 - 12 months). They were looking for methods for me to cope with his behaviour problems. They couldn't help me because every method they tried on my son failed, so they just told me to carry on in the way I was already doing and to put him on medication. But you know I'm totally against the medication they give to these young kids. When my son was of his medication (Risperdal) he told me that he was really feeling weird when he was on them and he hated his medication!

The first year in his new school was terrible. Zander complained about stomach-ache almost every day. He refused to sleep in his own bed (I found out later that he had several nightmares every night). He went to school by bus (with only kids with behaviour problems) but it wasn't save in that bus and when Zander arrived at school he was so frustrated that he first had to knock over some kids in the schoolyard. I went to see the person of my communitycentre in charge of this bus and asked her if my son could go to school in a cab. Lucky enough there was one other kid in my village who had to travel by cab to the same city as my son and from that day on Zander went to school by cab. Problem solved!

The second year in the same school Zander became a bully. The first year he was bullied and the second year he had copied the kids that bullied him. That's what happens if you put kids with all kind of different behaviour problems together in one classroom (that's my opinion). The teacher was more concerned about a boy with a eating disorder than about my son who had suddenly become a bully!

So, I went to different other schools in my district to see if they wanted to look after my son. It was very hard to find one and all the schools that I approved of refused him. So, finally he went to another school for kids with behaviour problems. This school was much smaller than the school Zander attended. There were only 36 pupils. 12 children in every classroom, 1 teacher and an assistent every day. In total he had 2 teachers because they both worked part-time.
This school turned out to be a terrible nightmare! Zander was always complaining about the same teacher but he wasn't able to tell me what she did that made him complain. He told me he hated her! One day I went to his school before closing time to pick him up for an appointment. This teacher invited me in the classroom and we had a conversation. When Zander saw me he immediately seeked my attention and began talking to me. The teacher told him to stop talking to me because she was talking to me. Zander didn't stop and then she went over to him, grabt his arm, pulled open a door and pushed him in this space (that she called a nest) not bigger than a toiletroom or closet telling him: "kids who don't listen have to go to the nest". She closed the door, turned over to me and said: "that's how we are dealing with this kind of a behaviour". I was shocked, frozen to the ground and I really can't remember what we were talking about afterwards. I was only thinking about my son in that closet (it sure wasn't a room!). I finally understood why my son hated that woman. After a couple of minutes (I was still in shock) she took him out of this closet and still in shock we left the schoolbuilding. In the car I asked Zander if he had to go to this closet often. Yes, and always when he had this teacher. The next day I talked to his other teacher and told her that I forbid them to put my child in this punnishment room ever again. She told me, that it was part of trying to discipline these kids but she didn't do it with every kid because she had noticed that some of them (including Zander) were really afraid of this room.
A few months later Zander went to another group in another classroom. They also had a room for the kids to cool down (that's what they tell the parents, but in my opinion it's a punnishment room!), but it was a much bigger room with windows. I told his new teachers that they shouldn't be putting my son in this room to punnish him, but they did it anyway. Zander told me he wasn't afraid in that room and that he liked being on his own so I didn't do anything to stop them.
Every day when Zander came home from school he had severe behaviour problems. It took him hours to get more relaxed. It was really tough to see him in such a condition every day! And he was still sleeping in my bed!
So I went to look for yet another school. You have to know that in Holland you can't start homeschool your kids once they have attended school. And if you want to homeschool your kids it can only be done if you have a religion with no school within 20 km of your home.
The only school I could find was an experimental school based on Sudbury Hills. Zander attended this school (with a personal aide) for only 6 weeks and than he was expelled because of his behaviour towards the youngest kids.

In the mean time I found out about this Dutch course based on Sonrise. I followed this course and when Zander was expelled from school I decided to homeschool him anyway. I had met this mother who had homeschooled her son with PDD for a couple of years and she helped me a lot to deal with the authorities of my community. Zander was tested again by a really good institution and they made the authorities understand that going back to school was out of the question because he was traumatized. From day one he stayed at home, he went to sleep in his own bed and the night sweating, which I thought was caused by an allergy of some kind, also stopped!

In January 2004 we started with our homeprogram. Thanks to a personal budget, provided by the Dutch health insurance for people with special needs, I was able to hire professional people. There were several teachers and players over the years. The last year it was a steady group of people.
Zander has learned a lot. In the beginning he refused to do schoolwork because it was remembering him too much of school, so I decided to allow him to unschool first. That helped a lot. Then we gradualy reintroduced schoolwork and at the moment he is doing just great! He even went back to school (middle school) last week. Only for 2 hours every day and we still homeschool him during the time he isn't going to school. The school is a special school for kids with behaviour and learning problems but not as severe as the so called clusterschools (the schools he attended in the past). It really is the best school for my son in our region. He is on trial because of the severity of his behaviour problems, but untill now he is doing just fine according to his teachers. At home however he is showing the same behaviour problems as when he attended the schools in his past. We now decided to take him on a long walk right after he leaves the schoolbuilding. Yesterday was the first time and he was so much better to cope with when he arrived at home.

So a new adventure has started. I hope he continues to do well at school. It is so important for him to learn how to deal with life. At school he will be able to learn so much more than at home. He likes going to school now and he already asked me if he can go for the whole day. I explained him that it's better to take little steps. Because his puberty already has arrived he wouldn't except my answer and became very angry. So I asked one of the homeschoolteachers (the only male teacher) to explain him again why we have to take little steps and now he accepts my decision. His puberty and him questioning my authority is yet another challenge!

I still find it difficult to come to terms with all the side effects of having a child with autism. His father tells me every time we see him, that I want to make a disabled child of his son. He can't except the fact that his son has autism and lashes out to me. My brother and his wife say it's to hard for them to support me because of the problems with my son. They live just a few streets from ours but I hardly see them (only on birthdays). The friends I had when I lived in Utrecht have their own lives and we hardly see eachother anymore.
My parents however try to help me where ever they can, but they are both almost 80 so I don't want to bother them too much. I have found one good friend here. Because of Zander she became very interested in autism and she is now working in this field. She is a coach for several adults with autism and is giving courses about autistic thinking for parents, teachers and other people interested in autism. She has a very busy life now and I don't see her very often.
And then there is a friendly neighbour I see once or twice a week who is very understanding.

But most of all I miss having a partner to talk to after a difficult day with my son and to talk about the next steps we have to take. I find it a huge responsability to take the right decisions for my son. And what will happen to him if something happens to me?
However having a kid with autism is rewarding because you can help them to overcome all the challenges of daily life that are so normal for NT kids, but it is hard work and sometime really frustrating! Never forget that when you meet somebody with a kid that is acting weird, or who is hurting your kids at the playground. Don't judge the parents for his or her behaviour! It is difficult enough for them to deal with their kid. Try to help families that are affected by autism. They will be so grateful for your support!

In my case autism has also affected my own health. Because of all the stress I developed fibromyalgie (rheumatism of the muscles). I'm not able to work. I have to see a acupuncturist every week for some painreleaf. Sometimes I'm not able to scrapbook at all because of the pain or because I'm to tired but overall scrapbooking helps me to distract and I love to do it. It's a shame I can't afford to pay for all the nice scrapbookmaterial! On the other hand it's a challenge to make something beautiful out of cheap material!

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