Connor

I began to watch Connor more closely and then realised that I had missed a lot, I missed some really key signs. He was nonverbal. I thought he said words but he didn’t, he only made squealing sounds when he was excited. I realised he never really knew that words had a meaning to them. When a child is growing up they are exposed to language from everyone around them. They start to learn the names of things like the toys they play with and food they eat, people around them and so on. Connor never figured that out. He always had a blank look on his face. His eyes were the part that got me. It was like the light was switched off. I knew he was in there but I had no idea what was happening to him. When he played it really wasn’t playing. He lined up his toys and if you messed them up he had a huge melt down. He would get his toys and put them right in front of his face and move it from side to side and make a funny noise. He would do this repetitively. One day I watched him for an hour. He sat in a basket and had his Woodie doll, Bulls Eye, Jessie and a few other things. He put them in front of his face making strange noises. He was so happy and he didn’t even notice me there filming him.

Connor always had to have the same DVDs on and it was usually Hi 5. He loved dancing and moving around and so did Lucas. His food was another thing. He really never ate. I was never able to breast feed him. He got agitated when he had to. I thought it might have been because he had a traumatic birth, coming out face down. Connor always had to have foods that were red. At first he always had the pureed jarred food then it changed to tomato sauce on bread, salt and vinegar chips, he had to have tomato sauce with his hot chips and he loved cruskets and vegemite. Toileting was another issue. He never wanted his nappy off. He would hold on to his poos for a good week or so. He ended up so constipated that we had to give him Power Choc and suppositories, neither of which were fun to give because Connor was also quite violent. In the end he would run around his bedroom to loosen his bowels up. This would usually happen at 2am in the morning because he was unable to sleep due to the pain in his tummy. Change was a big thing he hated, he loved routine and hated when I changed things around.

The diagnosis

In the end I suspected it was Autism. Lucas was at a special needs school and they had Autistic children there so I asked Lucas’s therapist about Connor and also if Lucas was possibly autistic as well. The lady from DSC brought a check list to me. Lucas had some of the tell-tale signs but Connor had ticked nearly all of them. The Therapist told me to get a referral to DSC to start the process of getting him assessed for Autism. A lady came out from Andrea Way. She knew from the first time she sat with Connor that he was Autistic and she started telling me about ABA. She also recommended ISADD. We were waitlisted and he was just over two and a half when he started his therapy. While we waited, the teachers at Lucas’s school could see I was struggling with Connor so they got together with the deputy principal and we were able to get Connor in to the same class as Lucas until we had a place for therapy.

Therapy

Once Connor started with ISADD it all fell into place. I had gone to the parent work shop and that changed everything for me. In one of the videos or slide shows (I’m not sure) it demonstrated that if you put in the hours (35 to 40 hrs a week) with your child they have a good chance of being able to function just as well as any other child in the community. They will still have their challenges. So I put Connor’s Therapy first. The first six months involved a lot of learning for myself. I was very quiet and didn’t really have a confident voice when doing therapy. I watched the therapists all the time and made notes constantly so when I was doing therapy myself, I always had my notes to back me up if I was unsure. I learnt how to manage different situations such as meltdowns during a session.

I remember Jenny Bolland coming out and telling me that Connor would be really suited for the Autism Unit in Beckenham. As funny as this sounds, I honestly thought to myself “no way, he’s never going to be able to go there!”. I didn’t think he would pick things up. It takes Lucas 6 to 12 months to learn. That’s what I did. I was comparing Connor to Lucas and I shouldn’t have. Autistic children learnt differently.  I did realize in time to get Connor into the Beckenham Autism Unit and I thank Jenny for getting Connor into the school. So with the combination of Connor going to school in the mornings, then when he got home he had therapy with ISADD and when they left I would do more therapy until I had to pick up Lucas from school. When I picked up Lucas, Connor would do more therapy. It was either home work from school or what was in our program from ISADD. So in total Connor was doing 35 to 36 hours a week of therapy, including weekends, and we continued this up until he started grade 3. 

Connor had to learn every single label you can think of such as calling me ‘mum’. That was the hardest part, when your child doesn’t even know who you are. But you know what? I was determined to change that! At the beginning, the bad days outweighed the good days and I never thought I would get through it. Connor was very violent and the constantly punching, biting and kicking. It really takes a toll on you. We needed to restrain him in order to calm himself down. I remember one day Connor had lost it during a therapy session and the therapist was holding his legs and I was behind him holding his arms and body down so he wouldn’t hurt us or himself. My mother in-law was there crying as this was the first time she had ever seen him have a true meltdown (though we dealt with this on a daily basis). Over time Connor got better and the melt downs were not as frequent. The program that ISADD runs was the perfect fit for Connor. The ABA was perfect. We knew exactly what he knew and didn’t know and if something wasn’t mastered we would keep working on it or break it down until he had mastered it. The reinforcement kept him motivated while he was doing his therapy and he enjoyed the rewards the therapist had in their bags and always checked if they had any new ones.

When Connor started therapy he was nonverbal and over time he found his voice. This is my favourite memory. My son had a voice and he was learning how to use it.  Connor loved watching himself when I was videoing him. He loved the sound of his voice and that he made words. The joy and excitement in his face was priceless. That’s what I will always remember, he found his voice and gave up the melt downs.   All the therapists that Connor has had over the years have been a god sent. He has challenged every single one of them but without ISADD and the ABA, I’m not sure were Connor would be today. I’m not sure how I would have managed without them.

Connor at 3 years old

Connor’s Challenges:

Connor has had a lot of challenges in his schooling. The Beckenham Autism Unit was a god sent for Connor to get him prepared for mainstream. The only problem with main stream is the struggle getting education assistance. When Connor started school he had a high level of assistance. He managed well with the work they gave him. He did have his moments, but with the teachers and assistants, he managed. Everyone loved Connor and went out of their way to help him. The problems he had at school were making friends. When he was in pre-primary, other children didn’t see his disability and accepted he had different ways to deal with things. As the years went on, kids picked it up more. Connor has a hard time with letting other people finish their work first. He has to finish first, constantly rushing his work and is not prepared to redo it. His biggest issue, and will probably be ongoing for the rest of his life, is losing in sports or not getting high marks in tests. He always questions “Why are they getting a better score than me? It’s unfair!”. He will still have a melt down because of this.

Connor doesn’t persevere with friendships. He thinks peers don’t like him and he won’t put himself out there to be part of a group. He would rather do his work by himself then join in a group. He feels his ideas are better than anyone else’s and he always has to be in control. He has changed schools and last year and this year has been a struggle for him. He doesn’t have an education assistant and they think he is coping well without one. He’s definitely not! He holds things together all day at school, with no one suspecting any issues. But he is constantly coming home, falling apart, with problems of socialising and people picking on him. He feels scared and alone. He has no one to talk to and no one at his new school knows Connor is autistic. School is a big challenge for him and I am constantly being his voice at the moment. He has enjoyed the social dance classes at school and he was also offered a scholarship for one term.

Connor’s achievements

Connors strengths are his math skills. He loves school work and works very hard to get good grades. He loves working with younger students in school i.e. the buddie classes and working with the year ones.

His biggest achievements are his extracurricular sports. He has a passion for tennis and golf. He still likes to play alone sometimes but is getting better as time goes on in being involved with the other kids for group activities. He is a great player but has issues with losing, particularly with tennis. We have had many broken rackets. Golf on the other hand, gives him more of an opportunity to calm himself down on the golf course where as opposed to tennis, where we are unable to go on the courts to help him regulate. He is really doing well with golf. He came second in the My Golf Tour for 2015. He really is enjoying himself and he has been invited to many of the pro competitions held in Perth. He has been able to see firsthand how the professionals handle themselves on the golf course. He has started the tour again for golf this year and has started off really well, winning the first two rounds of fifteen. Connor has been able to play on all different courses throughout Western Australia. Some of the courses he will be playing on this year include Kalgoorlie and Margret River. Connor’s passion is his sports and always will be. Personally, I think he would make a great sports teacher. 

Connor’s perspective

Do you remember having therapy?

I only really remember playing. I don’t remember much else but I have seen some DVDs.

How does Autism effect you?

Autism doesn’t really feel normal to me. It sometimes takes over everything of me and gets in my way. I have trouble explaining things properly and that’s really hard. I have anger and I get angry very quickly about losing. I like things done my own way. I like to know what’s happening in advance and if I don’t know what’s going to happen I don’t want to do it. I do before I think about what I am going to say.

But I’m also funny, helpful and creative. I like to help younger kids especially when I see that they need helping. I have a really good memory and I think I’m actually pretty brave, considering some things that I’ve done without much help.

Tell me about school

I feel like nobody notices me. School is very hard for me. When I learn something new I need a lot of help but I don’t get help. I feel very alone at school. I don’t have anyone to back me up. I love to learn but every day is different. I just don’t like the other kids. I get confused a lot.

What do you want to do when you finish school?

I will be alone for a few years before I look for a girlfriend, I’m not quite ready for a girlfriend yet. I’ll get a job. Be a real estate agent. I’ll go to University, train to be a real estate agent, so I can earn a lot of money and travel everywhere. Or I could be a golf player first and win some trophies, then become a real estate agent. Maybe go to university and become a sports teacher. I want to be all of them! I look forward to getting married and maybe have a child one day.