Tuesday, March 31, 2015

ABA observation

Andy's ABA observation appointment went well. He was crying at first and a bit cranky, but we got through the hour long observation. I brought a container with small bits of cut up sandwich, so that he could have lunch. The therapist wanted Andy to do something in exchange for his sandwich bites, which I figured would happen.

Andy became in a better mood as he was eating. The therapist wanted Andy to pick up a small block and hand it to me, before he would get a bite. Andy has never handed me anything EVER. So, I was really feeling like this wasn't going to happen. I would give Andy the block, and he would hold it and not want to let go. I cupped my hands under the block, asking for it, and when he let it go, he would get another bite.

I was surprised that Andy was trying to put small blocks into a small square container. I don't see him do this too often, but know he is working on this with the OT at school. He did this several times, as they wanted to see if he would "dump and fill". I was pleasantly surprised that he was doing what they wanted to see.

Now that they have seen where he is at with his skill level, they will come up with a treatment plan. Andy should be starting up his therapy in a few weeks. I am looking forward to see what he will take away from this therapy.

Thursday, March 12, 2015

ABA Therapy Intake

Andy's ABA therapy intake was completed today. It included interviews and questionnaires with me about his behaviors. Now an observation time has to be set up with Andy. Then a treatment plan can be written up to hire and train staff for him.

After the staff are trained, they will call us to set up a time for Andy to start coming in for therapy. This will take several weeks, but I'm glad I got the ball rolling in the right direction. Andy has benefited from ABA therapy in the past, and will now return to it with a new insurance policy.

His past employer-based insurance did not fall under Michigan's Autism mandate voted in to require insurance companies to pay for Autism services. His new individual policy purchased just for him falls under the Autism mandate, and services have been approved. The center just has to create a spot for him now, and he can get back to it.

Thursday, March 5, 2015

Andy is a mosaic of disabilities, time will tell what's in store for your child

I just wanted to point out that Andy doesn't only have a thin corpus callosum, or only microcephaly. Andy has layers of problems with his underdeveloped brain that go deep into his DNA. I am saying this because I notice parents are searching out "thin corpus callosum" on the internet, and perhaps getting this blog. I just want to reassure you that there are tons of kids with only a thin corpus callosum that do really well. There is a wide spectrum of things that can happen for kids with microcephaly, and developmental delays. Things can be mild or severe with any diagnosis it is impossible to predict where your child will fall.

I don't want to worry any frantic parents searching the internet that my son is what your infant with agenesis of corpus callous will look like. The truth is, no one can really tell you what your child's possibilities will be. It is the toughest most cruel and challenging waiting game EVER.

For years, it's been torture, but I've come to terms with everything now. My son's major area of concern now is the microdeletion he has within his DNA. He is missing two major genes that are most likely causing him the inability to learn like normal kids do. He also demonstrates autistic behaviors, along with high irritability, which a neurologist explained was probably from the corpus callosum not being fully connected.

His brain is very underdeveloped and he has low amounts of white matter. All variables are extremely stacked against him. However, he is blessed, in that he can eat food, he can laugh and squeal, army crawl after toys, and use his hands to get them. He is even now able to open and close his toy computer on his own. A year ago, I'd have never thought he could do this.

It is good to see what might lie ahead, to brace yourself for it, but I really haven't seen any two kids alike on the internet yet. Kids surprise you, and my son has surprised me. It has taken so many years to see so little progress, but I'll take it.

We are blessed that he is so happy now, and he enjoys life. He has so much joy, so I have stopped feeling so bad for him, because he is happy. He doesn't know any different. He doesn't know what he might be missing. He has friends that love him and really enjoy being around him. He has his own little life and people other than his family that truly care about him.

He's a charmer. He has his own little personality. He's so innocent. He wouldn't hurt anyone ever, and doesn't even know how to. He is a kind soul, and enjoys being around other kids. Certain things make him laugh, and he really laughs out loud. He loves music, it makes him so happy, and calms him when he's upset.

He's got his own destiny, and I'm here to care for him. I've finally allowed myself to have my own life, and he has his. All the major ups and downs will slowly level out for you with time. It just takes time.