Saturday, April 4, 2009

Brian's Journey with Autism

As part of Autism Awareness Month I want to share Brian's journey. From his diagnosis to where he is today.

Brian developed very normally. Actually quite ahead of the curve. He was crawling at 4 1/2 months and walking at nine! He was a MAJOR ham. Loved the camera! He always had this great twinkle in his eyes when he smiled for it. He babbled NONSTOP- I was so happy to hear that babble because my older son had a speech delay and he hadn't babbled very much. Brian would do this funny back & forth babble with everyone and it was so animated- I especially remember my Dad getting a kick out of it and he would sit with him on the couch at six months old and just have this whole "conversation" for half an hour. He loved the Itsy Bitsy Spider and Peek-A-Boo. He loved to follow Corbin around and try to do whatever he was doing. My Dad would always say, "This is the one. He's going to make a difference somehow, I just know it!"

I can't paint all of his babyhood as completely perfect. There were definite little sensory issues- which I noticed as my older son had those too (Corbin was actually just finally diagnosed with sensory integration disorder). He didn't like being outside- running like a maniac inside but outside kind of scared him and he would stay in one spot the whole time. The sun bothered him more than it should as did the texture of the grass. I have this great picture of him eating a sandwich on a picnic balancing on his bottom making sure to hold his bare toes off the ground. Around six months he went through this horrible stage of banging his head on the ground- all the time- so much so he would have a bruise all the time on his forehead. I asked our pediatrician about it and he said all kids do it at some point and he's probably just trying to get attention- I forgot about it as the phase only lasted about four weeks.

Brian was 18 months when his Dad & I split. It was at that time I started to get worried. I realized that words he had, he didn't have anymore. Headbanging started again- this time, much worse. He started pulling out his hair so much so that he had a bald spot on the back of his head. He didn't make eye contact. He lost interest in any toys- only trains now. I noticed he didn't point anymore. He didn't even wave bye-bye anymore. He didn't do the Itsy Bitsy Spider anymore. He wasn't the life of the party anymore- in fact I was too scared to bring him to any parties. At first I wanted to blame all these changes on the very rocky split his father & I had. But deep down I knew it wasn't.

As I mentioned before my older son had already been recieving services- so I didn't even attempt to ask my pediatrician. Instead I just went right to our Early Intervention program and asked for an evaluation. First we did a speech evaluation- basically the evaluation was completely based on my observations as the clinician couldn't get him to do anything- she witnessed a LOT of headbanging that day. The report came back suggesting we do further testing.

Next came Annie, who was our rock during this whole transition (and I still call every now & then even though she's not one of his therapists anymore). She was the one who diagnosed him with autism. I remember her saying, "He doesn't give a lot back, does he?" I know, that from the minute I asked for that speech evaluation that autism was in the back of my head- but it was then that I just knew she was going to tell me that was what he had. After she had done several assessments on him she asked me if I had any ideas on what I thought. I said, I remember it clear as day, "I don't want to say it. I think it's autism- but I don't want to say it and make it real." She kindly gave the label PDD-NOS, mostly to try to ease myself into the world- as she even admitted a year later when I asked her why she gave him that label when he clearly had classic autism. Brian was two and three months old when he recieved the diagnosis. About a year later he recieved the actual title of "autism" when we went for a second opinion.

What followed was a whirlwind of therapies, tons of reading on my part, and a lot of time grieving. I know I still had my beautiful boy- but he had disapeared into himself. I KNEW something had happened to him. How in the world does he go from the social advanced little boy he was to the boy who now didn't even notice if I came into the room. I had a really hard time explaining it to family and friends because unfortunately the only autism they knew was the "Rain Man" or they had an image of a total shut-off child. Brian did cuddle- of course it was mostly for the deep pressure and the skin-to-skin contact he craved. He did sometimes look at you and give you a smile that was just for you. He was a happy boy. Those things didn't seem to them like traits of autism. Of course, we all learned and grew together, and they are all now his best advocates.

Five months later I started Brian on the gluten-free diet. I had read a lot of books, had called other parents I knew who were doing the diet, and had scheduled an appointment with a DAN! doctor. Within weeks of being on the diet Brian's self-injurous behaviors just stopped. He went from banging his head 10-20 times a day, hitting his face 5 times a day, a bite to his arm here and there, and pulling his own hair & eyelashes throughout the day to nothing. He started imitating movements. He would do Simon Says type of games- it was amazing!

Getting ready for our DAN! appointment I asked his pediatrician for a copy of his immunization records. Before doing so, I had filled out a twenty page information pack on Brian and had sent it in. I brought the immunization records with me and sat down with the DAN! doctor and put together the record with what I had filled out and it basically brought me to tears. I realized that that first incident of headbanging at six months was when he recieved the DTP shot (three live viruses in one) and the Prevnar shot. Then right before his regression at 18 months he recieved the DTP again, the MMR (another triple), and the chicken pox vaccine. SEVEN vaccinations at once.

Brian had NEVER reacted to immunizations well. I remember after the shots at two months we were on the ferry going home (we lived on the island at the time) and he was screaming his head off. He was so upset that I was crying- I had terrible thoughts running through my head of all the things that could be wrong with him to make him cry like that. I had never heard anything like it. I took him right to the medical center on the island when we got off the boat and I was told he was having a normal reaction to immunizations. After that, every immunization was followed with a couple days of crying, tons of sleep, crankiness, and fevers. I didn't think anything of them since my trusted doctors had told me not to worry. Looking back, I can't believe I didn't see what was happening.

We've continued to do ABA, speech, auditory, and occupational therapy with Brian. He has been on the GFCF diet for quite a while and takes a couple different supplements. Brian is slowly coming back to us but he still has a LONG ways to go. I know that his immunizations had something to do with his autism. I strongly believe that perhaps his autism does have a genetic connection but environmental factors & immunizations were the straw that broke the camel's back. I WATCHED him change, right in front of my eyes. I will continue to fight for him to reach his full potential and for other's to realize there is hope with this diagnosis.


Christina said...

((Heather)) That was a great post. I said this to Michelle too but I have so much admiration for you and your strength! I really look up to you guys!

Christina said...

((Heather)) That was a great post. I said this to Michelle too but I have so much admiration for you and your strength! I really look up to you guys!