Coping

If you haven't followed our saga with Preston, you're probably better off. It's long, overwhelming and at times quite dramatic. I've gone back and forth with how much to share and discuss forever. I want to protect my child and yet I have a need to be open and honest and share to help others and gain the support I feel like I need. I don't want to label my children and I don't want to make excuses for them. But understanding their abilities and limitations is important.

Anyway, at his 4 year well check, there was some break down in what the doctor was asking him to do and what he was able to do (or at least able to understand). He referred us to a Speech Therapist at Primary Children's.

Now for those who don't know, Preston didn't speak much when he was two and we had him tested and put into speech therapy through Early Intervention. His speech caught up fairly well and when they tested him at three, he didn't qualify for the special needs preschool. For us that was good news. We don't want free school for our kid who has challenges. We just want him to succeed. But there was part of me that still felt something was off, and many of the specialists at the school said the same. They just couldn't put their finger on it. It's been a LONG, FRUSTRATING, EXHAUSTING process trying to figure out what his needs and limitations are because...well...because he's a kid and can't really tell us. It's like a great big puzzle. Over time we find one piece here and there and start to piece the puzzle together little by little, but we still have no idea what picture we're even trying to build.

Back to the present. The speech therapist told us he was behind in both receptive and expressive language. We were able to rule out hearing loss as a factor because after two years of trying and testing and sound booths, we were finally able to get him to understand and not be freaked out by the test itself. And it looks like he's at least in the range of normal for hearing. Yay to some good news! The audiologist referred us to a specialist at Primary's to have him tested for auditory processing disorder though since even though he can hear he doesn't seem to process it fully. And the speech therapist referred us to an occupational therapist since many of the skills he is behind in are self-help (using the potty, dressing himself, etc) or pre-academic skills (holding a pencil, cutting with scissors, etc). The OT was able to tell us that yes, he is behind and that it is most likely due to sensory integration issues and some praxis disorder. Um...what? Ok. Yeah, I had no clue. She explained that praxis is the brain's ability to plan and organize itself and carry through the action with the right muscles (a.k.a. muscle planning). They recommended speech therapy and occupational therapy for him. Both recommended 12 sessions over 3 months and then reevaluating based on his progress and new goals we will have for him. Whoa! Slow down. The other FANTASTIC (not) news is that we have no clue if the insurance will cover the therapy. The way they word everything is so vague (probably so they can avoid paying later). So we'll just have to start it and hope for the best. GREAT!

I'm not sure how most people handle news like this, but it went something like this for me.

1. Relieved to finally have some answers and to know I haven't been crazy or paranoid all these years.
2. Freaked out at the finality of really have a diagnoses (or several) and what it means for the future of my precious child.
3. Guilt. What did I do wrong? Did I cause this? Should I have talked to him more or rocked him more or held him... How did this happen? Did I eat something or drink something... What if, what if, what if...
4. Grief. I was sad and overwhelmed for Preston and for how much harder some things will be for him in life because of these trials. I cried and cried and then cried myself to sleep many nights in a row.
5. Researcher. I'm sure some people would rather not know all the details, but for me knowledge is power. It's overwhelming to deal with KNOWING sometimes, but it helps me formulate a good plan, schedule, routine, etc. if I have read and analyzed things from every perspective and broken it down into something more manageable. Not only did I read a lot on the internet, I found a bunch of books at the library and ordered several online. Here is my stack to begin with. Yes, I'm crazy, but I'm also already well into my reading and understanding my child a bit more.

We have our first therapy session with the OT next Wednesday. I'm excited to get to work with him and get some tools for helping him, but I'm scared too. It's not exactly good news and it's not good timing at all. But what do you do? You do the best you can to cope each and every day, you pray a lot, and you try to trust that the Lord knows what He is doing and will not abandon you in your journey. Feel free to keep our amazing little man in your prayers.