Last month Jon and I welcomed another baby girl into the world. Corinne Fiona arrived on July 11th weighing just over ten pounds! I had a rocky pregnancy which is why my blog posts have been scarce. Now that I have a newborn I’m sure there won’t be much change in the frequency for a while. Tonight I somehow miraculously got all three kids to bed before 8:30 so I am making good use of my free time before I crash and head to bed.
Another big event coming up this week is Liam’s 7th birthday! It’s impossible to believe he will be seven. It’s even harder to believe his diagnosis was four years ago. Since then, he has accomplished countless goals such as learning to speak, initiating conversation with a peer, communicating feelings and being able to tolerate sensory stressors. Before we moved to New York, we were lucky to have all Liam’s doctors and therapists at the Laurie Center for Autism and it seemed at though we lived there for the first year after he was diagnosed. He saw a neurologist and gastroenterologist there and did all of his speech, OT and PT at Spaulding Rehab in the same building. On the days he wasn’t there, Liam spent his time at home doing discreet trial ABA. One of his first goals was to sit in a chair. I remember sitting at the top of my stairs listening to him screaming while his ABA therapist and BCBA ran a program on how to get him to sit quietly at a table for one minute. At that time he could only say “done” when he had enough and it was almost too much for me to handle hearing my baby cry. He screamed ‘Done, done, done!’ over and over. I knew he needed it and I knew if he pushed through he would be able to sit down for one minute and his reward was to come and find me. That was the beginning of it all.
I didn’t know about the medical side of autism until a few months later when everything started to click and I started investigating his symptoms for myself and talking with other moms in the same boat as me. Eczema, bowel disease, thrush, low muscle tone, sensory processing issues, cerebral folate deficiency, PANDAS – all related to autism. Gee, we thought all we had to do was modify behaviors and work on social skills and he would have a shot at being NT (neurotypical). That was the easy part. Battling the medical side of autism has shown to be by far, our biggest challenge of all. I never thought my kid would have to take 30 pills every day just to function without pain, constipation, insomnia, inflammation, and to keep viruses away. Autism is not about kids behaving badly or about bad parenting. A major component of autism is medical. Many times once the medical part is addressed, the behavior part eases but not always.
Liam is very smart, sensitive, funny, silly and is a great friend. Four years ago I never thought he would understand how to play or how to run around the playground with other kids but he does that now. He has a wonderful imagination and actually smiles when he is at the playground. This is huge for him because he doesn’t usually show emotion outside of the house. His coaches and teachers always say the same thing – they can’t tell if he’s having fun because he doesn’t celebrate his achievements or show disappointment when he fails.
Behavior regression has been our focus lately mostly due to summer vacation and lack of a consistent schedule. Thank you school district for no summer program, good luck in September! 🙂 Communication, social awareness and building relationships will always be his greatest obstacles. Liam has to be taught how to stay on topic and maintain conversation exchanges. At one point we came up with a sort of script for him to use when meeting new friends and he would practice it at ABA. It took about a year but he is able to meet someone new, say “hi” and start a basic conversation. Many times he knows what he wants to say but it takes 3 or 4 tries to get it out successfully due to motor planning problems.
I could go on forever about what’s new with Liam but I want to end this update on a happy note. Even though there will always be something to work on or something that’s not going well, the amazing strides this boy has made overshadows them all. The best thing I get from him is when he snuggles on my lap and says “I love you.” He was almost four years old when he said it the first time and I will never take it for granted.
So happy birthday to my Bubba, my love, my inspiration.