Tuesday, October 30, 2012

CP, ADHD, SPD, and Aspergers Oh My!.........or A Bowl Full of Alphabet Soup and What Do I Do Now?

I'm not really sure where to start this post...............Hmmmm it's not easy to lay it all out there for others to read but I will. Sometimes,  the sound of Rob's chainsaw snoring keeps me up I lay awake at night with nothing but the soft sound of night to keep me company, I question this journey I am on and where it will take me. I start to feel sad or even angry, why was it me that was chosen for this, how am I suppose to make this journey and guide this sweet little boy to the amazing man I know he has the potential to be?? What if I can't do it? What if I am an utter failure? What if I'm not strong enough, not smart enough, not whatever enough? What if, what if, what if?? Sometimes I even wonder if we have read too much into things. Questions roll around and gnaw at the very core of me. My faith is strong.......doubt can be beyond strong and so sometimes........I AM AFRAID.
     So here I sit, I sit, a big old bowl of diagnosis alphabet soup sitting in front of me, steaming hot and just waiting for me to dive right in and wade through what it all means. What it means for everyday life, the right here right now, what needs to be done and how do we do it? What goals do we set and how do we achieve them?  What it means for the future, where is Jacob headed and what things can we do to guide him on his way.
     Most recently Jacob was diagnosed with Aspergers, I won't say I was surprised, I saw it coming, I was surprised that it didn't come sooner actually. Back in January we filled out a huge stack of paperwork and test kinds of things, saw a local developmental pediatrician and got hit over the head with a lot. (I won't go into her attitude or awful bedside manner right now) She looked over everything, asked a few questions, took some notes and handed us more letters to add to our soup. What she said was, Jacob was, on paper clearly on the spectrum, but he was "too friendly" so no, he has ADHD, sensory processing disorder,  low muscle tone, and mild hemaplagic cerebral palsy. These things I already knew, had know for a while, even if it hadn't been officially on his medical records. I will leave the details of this specific visit for another post, because trust me, it deserves its own post, its a doozy. About a month ago Jacob went for his annual check up with his regular doctor, we had been noticing some other spectrum type issues going on and mentioned them to her, she wholeheartedly agreed that looking over the previous paperwork and knowing Jacob as she does, that he is, friendly or not, on the spectrum. Again, nothing we didn't already see coming, but I still felt deep sadness, grief and fear. That bowl of soup got even deeper.
     What am I suppose to do now?? Just what I have been doing all along, I pick myself up, dust myself off, push that sadness off to the side, get myself together, make a plan, research, think, and get on with the journey. If I don't, if I just give up and be sad or mad or whatever, then what?? I'm Mommy, Jacob's Mommy, I signed up for this journey, sight unseen and I can and will stick with it, the whole way. Come the good, bad, ugly, hard, snuggly, or whatever lies in-between, I lean into my faith, trust myself and do it. I don't quit, no matter how hard the bad days are, I DON'T GIVE UP, not on myself and not on Jacob. I am his mommy and if I give up on him then who won't give up on him? So I plan, not alone of course, my husband and I plan and make decisions and take each day as it comes, and we have grown closer in the process.
     We have had to make so many decisions recently in regards to Jacob and there are more in our future, but for now, we are in a happy place, and feel good about the direction things are going. This past September while many other 4 and 5 year olds were boarding big yellow school buses and heading off to kindergarten, Jacob kept his jammies on late, didn't rush through breakfast, and spent long late summer afternoons soaking up sunshine at the park, digging with trucks in our yard, and meeting other kids that were doing the same thing. We have also spent alot of time reading, doing art work, talking about communities and maps and the whole wide world, doing math while jumping on our mini-tramp, and doing therapies like OT, PT, and speech all on our own, we walked away from the school completely (again, story best saved for its very own post), and everyday as we see our little boy growing, learning, and thriving we know without a doubt, we did the right thing.

1 comment:

  1. I HATE this misnomer that people on the spectrum can't be friendly! My husband can be a very friendly guy! He clearly as Aspergers and has an official diagnosis. Our son has autism and at first the diagnosis was disputed because he smiled a lot. Um, people with autism are not devoid of feelings! I'm sorry that you had to deal with a frustrating doctor when you first sought a diagnosis. I'm sorry for having to sort through the alphabet soup, and I understand the frustrations and fears in trying to sort everything out. It sounds like you are doing an amazing job! You can do it!!! :-)

    * coming from Love That Max

    ~ http://marfmom.com