October 17, 2011

Loving a child with (the possibility of) special needs

I said it. Out loud. And didn't hide my eyes away to avoid seeing peoples reaction.
My son has special needs.
We are a part of the Help Me Grow program here in Ohio and have been since my youngest was born. 
He was born with an Omphalocele (which I've probably mentioned a time or two!) and with that there are a few potential syndromes/disorders, Beckwith-Weidemann syndrome, Edwards Syndrome to name a few.
We opted to not do genetic testing until he was born, and everything came back normal. But we did learn he was deaf in one ear. 
With the fear that there still could be something wrong with his development, I enrolled in the HMG program and met some fantastic people! 
While my son has met his developmental milestones for the most part, he is delayed in speech which may or may not be due to his hearing impairment.
Now, while he might not be developmentally delayed, he does have struggles, and we love so much being apart of HMG and we are now at the stage where we meet weekly with other kids close in age and similar needs. We had our first "Family Meeting" today where the parents could just talk and share our stories. While I was nervous at first, it ended up being an awesome experience! It's great getting to know other families that are also raising a special needs child. Each child in our group has different needs, but we were able to bond and commiserate today and I think everyone left feeling a little relieved that they aren't alone in this stage of parenting!
I don't really talk much about Bennett's impairment because frankly I don't notice it! He behaves like he hears just fine (with the normal selective hearing children seem to develop at birth :D) and he loves to play  with other kids! Some might say that he doesn't have special needs, and maybe so. But I am grateful for such programs as Help Me Grow so that we can determine whether or not he'll need continued speech therapy or the socialization play groups. I've learned so much from them, and so much about my special little guy!
He is seriously the coolest 2 year old I know, and just takes life in with the purest heart and kick ass attitude. Nothing bothers him, he is always smiling! 
This post was more of a ramble, if you made it through this far, you are a rock star! 

I want to end with a short story that I heard today and just fell in love with. 

Welcome to Holland by Emily Perl Kingsley

When you are going to have a baby, it's like planning a fabulous vacation to Italy.  You buy a bunch of guide books and make all your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice.  You may even learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."
"Holland ?!?"  you say.  "What do you mean Holland?  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy"

But there has been a change in the flight plan.  They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.
So you go out and buy new guide books.  And you learn a whole new language.  And you meet a whole group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy.  But after you've been there awhile and you catch your breath, you look around and begin to notice Holland has windmills- and Holland has tulips.  Holland even has Rembrandts.

But everyone one you know is busy coming and going from Italy...and they are all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go.  That's what I had planned."

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, and very lovely things about Holland.


Kinda Like a Chef said...

Awww! Bennett seems pretty perfect to me. Aiden, same age obviously, is just beginning to talk, technically at least 6 months behind. He hasn't had a hearing test (opted out as a newborn and apparently not reliable as a toddler) but he appears to hear very well. He is suddenly, in the last couple weeks saying tons of new words. No sentences, still, nothing even close. But to me, he is perfect. We have opted to just let him continue at his own pace and not see a speech therapist. I do have several friends with children with special needs and they always amaze me with how incredible they are, both the children and the parents. Anyhow, that's my rambling for you!! Love, Mo

Anonymous said...

u r doing an awesome job with both your babies..it's a proven fact just by seeing their smiles in all their pictures! it's parents like you guys that help me see that their is always a future for our babies that need a little extra help on the way through life =)

Heather/Life With The Stevens said...

Bennett is actually a lot like Aiden!!
It's so hard, because I find myself comparing the two boys, Cooper talked so well and so early on so I always worry about Bennett.
Most days, I have the same attitude as you, that he is just doing things at his own pace! I wish I could get myself to feel that way every day!

Kinda Like a Chef said...

I think the fact that Liam was a fairly late talker (not nearly as late as Aiden, but pretty late) helped a lot. He won't stop jabbering incessantly now! I had a harder time with Liam because he had several cousins about 6 months older and it was hard not to compare him to them. We seriously considered a speech therapist for Aiden, but after talking to some of my friends who used a speech therapist for their children and having them hang out with Aiden, they reassured me that he was coming along fine. I'm sure in a year we'll both be wishing the car rides were a lot quieter! :)