Today we had Zachary's PT appointment. Kelly arrived and Z was full of energy and anger. As he gets older he is getting more and more frustrated with his lack of ability to communicate. Kelly pointed out a few things that made my mommy antenna stand up full alert.
Let's start with the good stuff, Z is making great progress. He is able to do all the exercises that she assigned us last month. Today we put a step stool in front of the couch and Z used it to help him climb on the couch. He showed Kelly how he can take a few steps from me to the couch, how he can climb up and down the steps, how he can stack some blocks and a few other tricks and words. Our concerns are still his lack of stability in standing and walking. Kelly said she had no concerns with his speech and most of what he was doing is just par for the course and he will get stronger as he takes more steps. In order to help him we are to let him stand in front of the wall or one of us and let him take 3 steps and have him stop...this will help him learn to slow down and eventually help him stand rather than him going until he finds something/someone to grab on to. We will also continue what we have been doing. If he doesn't have any progress in this by his Aug appt. then we will discuss getting him more therapy.
Kelly pointed out that she thinks Z has a high pain tolerance. While she was here Z showed her how he likes to headbutt the floor when he is mad, how he bites himself and smacks himself when he is mad and frustrated. We talked about how he doesn't crawl on all 4s and will belly/army crawl on the concrete and get all scraped up and he never cries. He falls and doesn't cry unless it is a slam to the floor with his head. He takes a lot. I just assumed it was because he dealt with his fair share of needle pokes, surgeries and tests and maybe he was just use to pain. She didn't say what her concern was but I kind of figured where she was going and maybe I'm wrong. I've read that Noonan Syndrome children can be autistic too. I did google high pain tolerance in autistic children and it seems that some children with Autism do have a high pain tolerance. I've watched him for a few months and wondered if he was on the Autism spectrum or if NS and Autism cross in some ways or if he just Zachary being Zachary. In the end it won't matter what label gets stuck on Z because he is Z and we love him for who he is and always will!
We go see Dr. Kate in 2 weeks and I will ask her opinion on all this...more therapy or if we continue to wait and see how he progresses. We will also have her check his liver and spleen as the oncologist wants that done every 3-6 months. Then in Sept we go back to the geneticist for a follow up. We will review all his tests and discuss what the next steps are and what doctors he needs to see.
Jonathan is still adjusting to school. He cries a bit in the morning but then seems to be fine. He tells me he only cries one time a day now and that he tries really hard not to cry but that I am gone too long and he misses me. It's sweet to be loved so much but I told him not to waste his day being sad because Mommy will always come back for him.
1 comment:
My child is on the spectrum and has a high pain tolerance as well. It sometimes makes it difficult, but you learn to deal with it. If you suspect or have concerns about autism, maybe get it checked out by a neurologist. Starting therapies earlier than later can make a HUGE difference as we have seen with my son.
(((((HUGS))))) and if you need anything or have some questions, you know how to contact me.
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