Friday, February 20, 2009

What do I do now?!



Just when I thought I was an expert about my son's disorder, I get the shock of my life!!

I have been really busy the past few months gathering as much info as I could about CAS and trying to help my son develop as much speech as possible. Although his first day of Kindergarten is still a little over a year ahead, I am learning that the sooner he develops near normal speech the better the outcome for him and the better chance he has for a good education and "normal" life!

He had his 4th Birthday on the 22nd of January, with a birthday comes his yearly physical, where I addressed my concerns with his possibly having Sensory Processing Disorder (a condition I have suspected for a long time, but had not been "officially" diagnosed) and his Dr. referred us to a Pediatric Neurologist...

I made the appointment with the PN for Tuesday February 17th, and attempted to be as prepared as possible for the day. I have learned, among many other things, that when it comes to dealing with these types of specialists, especially when you are the one inquiring about a "specific" condition, it is best to be prepared with as much knowledge as you can gather, along with very detailed information about your child as to why you are inquiring about it to begin with. I found a really good checklist for SPD (Sensory Processing Disorder; aka Sensory Integration Dysfunction...I will add a link at a later time my laptop is not working too well for this at the moment (: I used a "key" to identify how often if at all my son exhibited each of the characteristics i.e; s= sometimes, o= often, ob= obsessively, *= he did this at a younger age but no longer applies. I believe that having that checklist helped quite a bit with all of the questions the Dr. had for me.

After a very thorough examination and many, many questions....the Dr. agrees that we have a huge problem here, I am NOT exaggerating any of this...I am NOT crazy like so many other people have tried to imply!!! She asks me if anyone has ever mentioned the "A" word to me about him...the A word...HUH...what like a$$ (that was went through my head..LOL) "Autism" she says...okay...I sure wasn't prepared for that one!! She gives him the "official" diagnosis of "Sensory Processing Disorder" and "Autism Spectrum Disorder" aka "PDD-NOS" and says she wants to have a sleep study done on him with a full EEG, as well as a full array of chromosome testing to include a test for Fragile X Syndrome. She wants to see him again in 4 months, and sends us home with a suggestion of buying an over-the-counter med called "Melatonin" to help him sleep better, and a script for clonidine (a med for high blood pressure in adults...but also used for kids who have ASD's or ADD, ADHD) Apparently children on the spectrum quite often have sleep problems, I never knew this, and have been driving myself insane with no sleep chasing after this child at all times of the day and night!!!! :)

Now...on the bright side, I have a new subject to become an expert at :)! This is who he is...always will be, and I love him no matter what...I know everything will be okay, deep down...but I can't shake the fear of the unknown for him!!! He has a very long struggle ahead, but he is a very strong willed little boy, and overall else...he is very, truly loved by all who know him!!!