Monday, April 28, 2008

The First Day

So here I sit...wondering why I haven't gotten all of this out before...why I haven't thought of this a long time ago. I need to do this now and today is the first day......

Life has been really good for me... I have a pretty perfect life (well by my definition of perfect;-) I would have never dreamed of having- with a wonderful, caring, loving, compassionate husband, two very beautiful, loving, kind, and respectful children. Zoe who is a very smart and beautiful little girl and one son with special needs - who is also very gorgeous and may I add, very smart as well! I am fortunate enough that I get to spend my time at home taking care of my children (my husband too) - running around, playing, swimming, going to the gym, taking Zoe to and from school, and dance, going to numerous Dr's appointments and therapy. My weeks are very busy and never the same from week to week.

Let me tell a little about my very special little boy, my beautiful son...... His name is Zachary When I say little, I mean "Little" - his size has been a constant struggle for us since he was about 3 months old. At 19 months old he is only 19 lbs (he has lost 11oz this past month). He has been threw more testing over the past 19 months then I care to remember. At one point I had to learn to come to grips with the possibility that Zach was going to be deaf - but we over came that (he had tubes put in in February and by the end of March his hearing had come back) We are unsure if episodes that we believed were seizures are seizures or behavior issues from his SPD - that is scary - the not knowing!!! To look at Zach or even spend a few days with him one would think he is a normal child, but he isn't.......

Zach was just diagnosed with speech Apraxia and SPD (Sensory Processing Disorder). These are both neurological disorders. It has been a long time waiting for some type of diagnosis for my little man. We are finally getting somewhere with something! Zach has started ST (speech therapy), right now it is only 2 days a week (the SLP wants him there 5 days a week) Last week we had his formal evaluation for OT (occupational therapy) and as soon as we can get approved he will be doing OT 2 days a week to begin with. The OT is also trying to get us in with the PT (physical therapy) because Zach is very weak and really needs to build much more strength, she feels that by having her and the PT it will benefit Zach much more then just her alone can do.

Definition of Apraxia of speech: A severe speech disorder characterized by inability to speak, or a severe struggle to speak clearly. Apraxia of speech occurs when the oral- motor muscles do not or cannot obey commands from the brain, or when the brain cannot reliably send those commands.
Definition of Sensory Integration Dysfunction/Sensory Processing Disorder - Sensory Integration Dysfunction; now called Sensory Processing Disorder is an inability to pull together and understand (or process) sensory information from the environment. This includes the ability to understand sensory information that arises from one's own body (such as from muscles and joints), as well as understanding sensory information that arises from other people (such as language) and objects in the environment

The hardest of news to hear was that he does have issues - it wasn't me being an overly paranoid Mom or Zach being my baby, and that, just maybe, I didn't want him to grow up. Zachary will be in therapy for a very long time, most likely will be transitioned from EI (early intervention) to the schools ESE program when he is 3 and they can't tell us how much it will help him or if it will even help him. I know that these two things may not be all that Zach has wrong. As for now we will stick with this and it is nice to finally begin to understand why Zachary is how he is!

Zachary does not speak (this has nothing to do with him being slower because he is a boy or just because he is a late talker or anything to do with him not hearing in the past (which by the way I HATE hearing all of these from people)) and he has his own little unique quirks. He is very slow in getting to know strangers (if, he even gets to know them) and hates to be moved by anyone if he is in his own little spot, he doesn't like to be touched - but yet loves mommy or daddy to cuddle with him on his terms of course. He also hates the car, or swinging on a swing, being dirty, having anything on his feet, or anything that isn't his normal routine. Zach does not like to look people in the eyes. His way of communication is ASL, grunting, or having a huge tantrum.

I'm going to be positive -- it is like a friend of mine (Molly) told me "you just had a baby and the Dr walks in - he asks "so is the baby walking yet?" you look at him as if he were crazy and say "of course not he was just born" I need to remember this and remind myself daily - No Zachary isn't talking yet -- but will he, YES!!! I need to be strong for him, I need to be his advocate and get him all the help he needs. One day my little boy will prove lots of people wrong --- one day I will look back at this blog and laugh that I was ever so concerned with Life's Struggles.

Thanks Molly, Kori, Tanya, and my TNTers for all the strength you've lent me, all your wisdom, and most of all your true friendships ;-)

If you are interested on info about Apraxia or SPD here are a couple links to help understand what we are dealing with.....

This is also a good video on Apraxia from youtube......

I know I'm going to have my ups and downs - I will have my good days, I will have my bad days (right along with Zach) Hopefully this blog will allow me to get out some of my stress.


jkteachmitchell said...

Thanks for they update. Just want you to know I am here for you and thinking about you. Call me when you need to talk. I look forward to future updates. All my love to you Zoe, Doug, and Zach...
I wish you all well
Love Jeannie

KoriG said...

Hon, you are the best mom ever!!! And God knew what He was doing when he sent Zachy to you. It takes a super special Mommy for a Special Needs child...God needed an awesome place for Zach. You know that, and that is why he was given to you, even when you'd decided that life would be ok as a family of three.
I love you hon. You know that. I will ALWAYS be your strength on those days when you don't feel strong.
I think this blog is an AWESOME idea! Isn't it freeing to say it? To see it in print?
As hard as this is, I agree, you will one day look back on this and it will feel like a distant memory.
Love you!

ChichiBoulie said...

First of all, sending huge hugs to you and Zach. And secondly an enormous congratulations for finding a way to share this with everyone. I'm so glad Zach's weaknesses have been pinpointed so that you can get the appropriate help.

former TNT mum to Leopold