My Boys

Summer 2006
Brandon was born on April 16, 2003 after being overdue 12 days and having a 16 hour induced labour. He was a happy little healthy boy. As first time parents, we did not question his developmental delays or odd behaviours.

I understand that not all children are big cuddlers, but when my child pushed me away from a hug at only 6 months or dodged a kiss, it just broke my heart. Before I did more research on Autism I questioned why Brandon did not have very good eye contact. He would go out of his way to look in the other direction if he knew you were looking at him. When I started to question his speech development he was referred to speech therapy and also had multiple hearing tests to rule out any hearing impairment. As it turns out, he is autistic. This explains why he would tune everyone out and remain in his own little world for a period of time. Since Brandon had difficulty communicating, he would have frequent meltdowns and bang his head on objects. (He has since grown out of the head banging).

We always thought that Brandon was very organized with his toys and would line cars up on the edge of the kitchen table.  He has grown out of this, but it is one of many characteristics that make up Autism. Brandon never crawled. He developed his own approach to movement which resembled a crab-like crawl. At 16 months he finally developed walking skills. But this is when new behaviours began to arise. He would love to go for walks with his “Poppy” during this new walking phase, but he would have a meltdown if they stopped walking. Later we realized that he had and still has a problem with transitioning between tasks.

Brandon does have one self-stimulating repetitive behavior that has decreased over time. He will take a little car and spin circles in the floor. It seems the louder he can make the car, the faster he spins.

I was very impressed that Brandon could play all by himself very well. Little did I know that this was also another autistic characteristic. After looking back I realized that Brandon is only now learning how to play make-believe.

Some children with Autism will have sensory issues as well. Brandon likes to mouth toys and rocks in his mouth and prefers crunchy food. He has an obsession of carrying “Thomas” trains, cars or rocks around the house.

Medically I was told that Brandon was a healthy little boy, even though he threw up multiple times a week and rarely had a normal bowel movement.

Then on December 7, 2004 (Brandon was 19 months old) I was blessed with a second son, Benjamin. Who was also born healthy and overdue by 7 days. Many children will get jealous when a new sibling is introduced into the house. Brandon simply ignored Benjamin’s presence for the first two weeks of his life.

I didn’t have very much family support each time I brought up the fact that I felt something was wrong with Brandon during these first couple of testing years. I was told that he would catch up in his development and we should wait it out. But I couldn’t wait, June 2005, I took Brandon to an Island pediatrician and requested a referral to the Autism Assessment Team. After several phone calls and months later, I received details about his upcoming assessment in January 2006.

This assessment revealed that Brandon had enough characteristics to be diagnosed with Autism Spectrum Disorder. He was 33 months old. It was such a relief to have an answer for his behaviour. The big question is what happens now? We all have dreams for our children, but mine were crushed that day.

Robert and I were told that treatment for autism on PEI, consists of a government Early Intervention Program that provides programming for 20 hours of one on one therapy a week. But there is a waiting list for this treatment. At the time of diagnosis Brandon was not scheduled to begin treatment until September of 2006. From personal experience and speaking to other families affected by this waiting list, there is a huge lack of support for families during this waiting period. Families have already spent years trying to cope with the child’s behaviours and to be told there is still no where to turn is very scary to say the least. The Autism Society of PEI does it’s best to provide support to families and individuals affected by autism, but they are not counselors and are coping with their own autistic children as well.

Well I do have some good news to report. I did receive a call from the Provincial Autism Coordinator in April and was told that there was room in the program for Brandon to begin in May. I will not get into the details of this at this time, but Brandon has progressed extremely well in the last couple of months of one on one therapy. (More info on this soon…)

But I do not think that all his progress is due to this one on one therapy. Since Brandon’s diagnosis I have travelled quite a bit to get as much training as I can so I can work with Brandon and help other families on the Island. One extremely important conference that changed my life was the Defeat Autism Now (DAN!) conference that took place in Washinton, DC this past April. This event focused on Biomedical treatments for autism. My dreams for my son, seemed a reality again. When I returned home, I made changes to Brandon’s diet. At three years old Brandon had a very limited vocabulary and was very frustrated when it came time to communicate. The day after his 3rd birthday I took him off cow’s milk. Within days his vocabulary was exploding. It was unbelievable. And to this day he has only thrown up twice due to sickness. One month later I took him off gluten products. I have noticed a positive change in his behaviour, but with every new intervention that I try,  I understand it usually gets worse before it gets better.

To this day, Brandon will not initate a hug or kiss, but he will repond if I ask for one. He is turning out to be a thoughtful big brother and helps Ben out when needed.

Each child with Autism is unique and their body is going to react differently to different treatments. There is no “one” treatment, but through trial and error you and find out what works best for your child. I can only pray that Brandon will have access to proper intervention and continue to learn and be able to live independently as an adult.