Wow, I can't believe that I am actually going to start blogging. Blogging; is that even a word. Well, several people have suggested that I start a blog about my journey with autism. I guess I should correct that and say "our" journey with autism.
Gavin had his first follow up appt at Children's today since his initial diagnosis. His appt was actually six months overdue. However, I was so overwhelmed this past year with his intensive therapy schedule, a trip to Boston was the last thing on my mind. The drive in was crazy. I am a country girl. Hate driving in the city. Sure enough, my gps took us directly into the "heart of Boston". We ended up at Quincy Market instead of Children's. Thank goodness my aunt came with me. We were able to ask for directions as well as reprogram the gps, and we were only 5 minutes late. Gavin's Developmental Pedi, Dr. Rappapport, was very pleased with the progress he is seeing. We talked a lot about the difficult behavior we are seeing at home; throwing things, screaming, sometimes biting, and hair pulling. He suggested that we continue to ignore, ignore, ignore. We also talked about his "stereotypical" behavior; jumping, visual stims, echolalich speech, repetitive behavior. Gavin is hyper focused on letters, numbers, words. I have a picture hanging with the words "It's the beach." All morning he would walk over to the picture, run his finger along it, and read the words. Over, and over, and over again. The first two times you think it is cute. After the sixth, seventh, tenth time, well, you are like, "ok, Gav, let's find something else to do!" Or when he watches a video and plays the same part over and over and over again....yikes! Dr. Rappapport did lots of observing of Gavin. He then told me how pleased he was, however, he still thinks he needs an intensive program. My heart sank and my eyes filled with tears. I guess I was hoping to hear something else...."Your son is not autistic anymore." "Your son is losing his diagnosis." "Your son is doing so good that in two years he will no longer be autistic." Reality slap, Paula! So, he is recommending more ABA home therapy. He also referred us to the LAPP Program (Children's Hospital) in Waltham. They have an Autism Language Program that Gavin would be a good candidate for. I am excited to hear back from this program.
Before I left Dr. Rappapport's office he asked how everyone in the family was doing, especially me. I smiled and told him I was good. That I was happy that we made it through the year. I don't think he wanted to hear how I REALLY felt. How everyday is a challenge. I spend most if not all my day redirecting, trying to figure out what Gavin needs, what he wants, trying to redirect his visual stim, ignore his high pitched scream, getting him to respond to his name, getting him to make eye contact, and make sure my other two boys' needs are met. How somedays I grieve for a "typical three year old", I grieve for his brothers. I stay awake at might wondering what is going to happen to my little boy. Will he be able to function independently someday? That everyday I question, "why, why, why??" So, I guess my smile and response was best.
We also had to have Gavin's height, weight, and blood pressure taken before we left. Well, it was an entire process to get him to step on the scale. Gavin did not understand the function of the scale. Trying to explain it to him is no use. He doesn't understand the function of language. So, I stood on the scale to show him visually what it was for. It didn't work. We attempted to lay him down on the baby scale. That didn't work. We even attempted to have me hold him and weigh us together, that still didn't work. After about fifteen minutes he noticed the scale had buttons at the top. He wanted to touch the buttons. So, he stood on the scale just to touch the buttons and we prayed it was long enough to give us his weight. IT WORKED! We had to hold him down to measure him. When it came time for his blood pressure, I told the nurse to forget it! Tell the dr. he wouldn't cooperate..ha! She agreed. Thank God!!
We had a easy ride home from Boston. Didn't get lost, and stopped for icecream!!
I can't believe I finished typing my first blog. Just to let you know, it probably took me about an hour and a half. I had to keep stopping and redirecting my little guy away from the computer.
Lastly, just want to give a shout out to all my family and friends. Thanks for coming along with me on this journey. "OUR JOURNEY". I would not have survived this year without each and everyone of you. I love you all!! I hope you enjoyed reading my very first blog. Please forgive the typos. Stay tuned....................
