Saturday, May 14, 2016

When you cant get the words out...2016 Apraxia Awareness Day

As I am going through my morning routine on the computer...first, lets see whats in the news. Then check my email...and media. I'm scrolling through and I'm seeing more and more about this "Apraxia Awareness Day" that is...well..TODAY. It hit me...HARD. This is our biggest daily struggle. It affects everything. Its confusing for my husband and myself, because we cant understand what Kenny is trying to tell us. Its frustrating for Kenny because he'll keep repeating the same thing over and over his babble that he honestly thinks is words. Then when all else fails, he starts with a frustration tantrum. I mean...I don't blame him. How it must feel to know what you want to say, think you're saying it right and one understanding you. I'd have a massive meltdown too. Just thinking about it makes my heart hurt for my son who has really defied the odds...and who continuously is fighting.
These are just a few examples of what we and Kenny have to deal with on a daily basis. The love, the excitement, the complete "unawareness that nothing is wrong" along with the frustration that comes from it. The excitement of getting a word...almost perfect...and the learning process. Its all here. I...I mean...we, have come to know what some signs are and what certain sounds are...but the idea of my son not being able to be understood is honestly, quite hard on us and on him.

Just imagine only being able to express yourself with smiles of happiness and frustration. It almost like being in a foreign country with no one able to understand anything you say. Yes...its that upsetting. Not being able to tell someone whats wrong, what you want, what you are excited about...nothing. From a moms point of view...and I am writing this while Kenny is throwing a tantrum for something I have no idea what for. I am so sad that he is getting so upset, but I just cant understand what he is saying!
So today, I am writing about Apraxia Awareness Day...which is today.
A day that is an every day issue in the Tomecko house. An issue that is irritating, aggravating, and  upsetting to those that just get the diagnosis...any beyond, because some have no idea what the diagnosis of apraxia means. It is an issue that needs to be made aware.

My son has apraxia of speech. 
We have a few ideas what is causing it. It could be a stroke when he was in the NICU, his microcephaly, or his cerebellar hypoplacia and arachnoid cyst that is causing his apraxia. 
The input is there...its the output. He does have a hard time chewing and swallowing that is part of his complex issues.
Once a week, my husband or myself take our son to speech we have since he was 3. We hope and pray that he can form sounds with his mouth. When he does, it is a HUGE celebration! In the last couple of weeks, my son learned the word "puppy" and the sign for hamburger. To us, this is a norm that is taken for-granted by most. We want him to learn to talk, but know that its not coming easy for him. Between being born so early (17 early) and being severely deaf...along with some major brain issues and this thing they call apraxia of has taken a toll on us as parents, and him.
Our goals that we, as Kenny's parents have set for him include being as typical as possible, to learn to use his words, use sign language, and to use his communication device (he has his iPad with Proloquo to go). Sure we could have just stuck with one or another, but we want to challenge Kenny. He is learning and so we will keep pushing him to learn and do more.
Its tiring.
It calls for a nice big glass of wine many nights.
It is also something that keeps us young and us wanting to tell others all about this issue.
As a parent, my thoughts go to his future. The "OMG...what if he can never be understood" aspect of his life. It is gut wrenching. How can one go through life unable to communicate with others. You cant make friends because no one understands you. You cant tell anyone your wants or needs. You cant tell someone if you are hurt or someone hurt you.
You cant tell anyone your hopes and dreams.

How can I fix this? How can I make this life better for my son?
I can only so as much as I not much. I feel helpless as a mom.
So the only ways I can really help is a lot of speech therapy, working one on one with him and awareness (which is why I'm writing this blog post).
So, please...when you see a child that cant talk very well or at all...please might be apraxia of speech. Its hard on the child and on the family.

Learn more at: Apraxia-KIDS

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