Tuesday, September 22, 2009

Harrison's World part 5 -- parent frustration


frustrations that we feel as Harrison's Mommy and Daddy

Things People say -- I know they mean well but it hurts Harrison and it Hurts me for him.

* "He will talk when he wants to" --> really he wants to talk he CAN'T and he may NEVER talk the way we do.
* "He will out grow it" -- > I hope so but we don't know that he will
* When people ask his name or how old his is, (the cashier etc) and when I answer for him they ask him again wanting him to tell him, I want to say he would have told you the first time if he could. I have even had a lady in the checkout line tell me that he can speak for himself. I went on to tell her (as nicely as possible) that no he can't speak for himself.
* when some asks if he has autism since he does not talk -- no they are completely different disorders

Radom things :)
* when people think he is mentally challenged because of his lack of speech, he is very smart and understand EVERYTHING WE SAY.... and it hurts his feelings in a BIG WAY when we talk about him in front of him.
*The lack of knowledge even among doctors and therapists
*When his friends question why he can't say something
* when I see defeat in his sweet eyes when he can't comminate what he wants, or he gives up trying.
* I have trouble leaving him, even with family or therapists since I am his translator.


Insurance

* While Apraxia is medical disorder, they want to treat it as a speech delay and not cover services that he NEEDS if we want him to talk.


THE BIGGEST FRUSTRATION FOR ME --> not knowing what my sweet baby boy is trying to tell me is so hard. I know if he could he would be telling us jokes and stories. I would LOVE to hear about his day, what his fears are ,what he loves, why he woke up, what he would like for lunch, what hurts,etc. I would LOVE TO HEAR HIM SAY HIS NAME, and John's heart would break if he heard the word "DADDY".

Even though we don't hear these things we know God has a GREAT plan for perfect little Red Head Wonder

2 comments:

Jennifer Burgett said...

Your post brought me to tears.

Working Mama said...

ps...I love you guys!