Friday, December 30, 2011

Diagnosis #4 and counting...

Ugh! I remember the days when Noah was first born and our main concern was the diagnosis of Down syndrome. However, not long after birth, we found ourselves spending six days at Phoenix Children's Hospital only to receive a second diagnosis, Transient Mylo-prolifitive Disorder. Hmmm. Down syndrome really isn't such a big deal!
By the Grace of God, we overcame that particular obstacle and could focus on our original diagnosis of Ds.
Fast forward four years, and now we receive the diagnosis of Verbal Apraxia. Ahhh, this is why our little man isn't able to speak to us yet, he has motor planning issues, making it difficult to verbalize as well as other children, even those with the same diagnosis of Down syndrome. Ok... move on to plan M (since by this time, we had already exhausted plans A-L).
So, we find the apraxia specialist in Arizona and proceed with many appointments at a very expensive cost, because of course, anything worth while is not going to be covered by the State!
Age 5 comes and goes... hmmm, still struggling with this verbal communication thing, and hey, did you notice, our attention span seems to be depleting. Oh, hurry, add more Ginko Biloba, that will do the trick. Add a little B12, some more fish oil. Wow, the poor little guy never gets to drink a simple glass of milk because every cup is filled with a vitamin or enzyme of some sort!!!
Well, now in doing research, I learn that apraxia is not just an issue with speech, but could be global; meaning this could be affecting his entire progression, including gross and fine motor skills. (is this why he doesn't like to draw or finger paint? what about climbing up on the jungle gym, or even just the simple task of jumping)?!
Soooo, I find the occupational/sensory specialist that is in the State of Arizona, and I get on the waiting list for the all dreaded... EVALUATION. Oh, how I hate these things!
So, my little, beautiful, perfect in my eyes, kind hearted man was evaluated on December 15. I just received the evaluation, all four pages of it. In a nutshell, it states that my little man...
"Presents difficulties with motor planning, even more so than the typical developing child with Down syndrome. In summary, Noah presents with decreased postural control (standing up properly) decreased core and upper extremity strength (weak tummy and shoulders) decreased fine motor skills (dressing, eating, writing, etc) difficulties processing sensory input (UGH!) and difficulties with motor planning affecting his ability to perform daily tasks in the areas of self-care, play and academics as required of children his age".
Ok, calm down. I recognize that this is just information, all good information to get Noah the help that he needs. I just wonder where the innocence of a simple diagnosis of Down syndrome went?
When I look at this image of my little man, only nine months old, spending the summer in Coronado... who would have thought that four+ years later we would be reading such cold hard facts about this little beauty!

However, my rock is not big enough for me to hide under any longer - but even better, I don't want to hide. I want to stand tall, be proud and help Noah Bryce be the best that he can be; no matter how many diagnosis labels "they" wish to attach to him.

I love you Noah, and Happy New Year to you!!!

Wishing everyone a peaceful, safe and blessed 2012~

1 comment:

  1. Oh Raquel, no need to hide under a rock...look at your side note "Lead me, guide me, walk beside me". That pretty much says it all. God will lead and guide you and he'll take all the worry too. Sam was diagnosed non-verbal, apraxic, extreme low tone and with oral motor issues. Now I know you have watched the videos and heard him speak. Speech will come but I know better than most how desperately you want to hear Noah talk...because I was you 6 years ago. Hang in there...if you haven't checked out Communicating Partners, Dr. James MacDonald please do. This book helped me better understand how to communicate with Sam and help him express himself. I'm sure NACD has told you to make sure his hearing is good, that was a big set back for us. Don't let the labels get you down, we've collected a boat load of them over the years and they still don't come close to describing the awesome little boy I know and love as Sam. Today I actually found myself wondering how I could have ever thought that Sam might not speak. Noah's voice will come with your help, love and support. You can do this. Happy New Year!!