Thursday, August 30, 2012

Selective Hearing

Aaron comprehends a lot more than even I realize most of the time. The other day he saw a sticker with the number one on it and he brought it to me and held up one finger! He knew it was a number one! Incredible!

Then we have days like today when he wants to watch Blue's Clues for the 10th time and I tell him "no". But he just looks at me like he doesn't understand me and gets closer to my face and asks over and over again. He sure knows how to play up the "I don't understand card". Stinker.

But don't worry I'm not giving in. I've got his number. 😉

Friday, August 24, 2012

We Have a Talker!

When Aaron was born and subsequently diagnosed with Down syndrome, several people told me that they believed he would grow up to be a great speaker. That he would have an impact on this world. That he would do great things with his life.

Those are all great things to hear when your child has just been diagnosed with a permanent, developmental disability that will alter the course of your life.

I don't know if those things were said to me to make me feel better or because the people who said them truly had a strong feeling that they were right. Whatever the reason though, they have stuck with me over the past four years.

Specifically the one about being a great speaker. It had to do with his name. Aaron is a biblical name. Aaron was Moses' brother who spoke for him when Moses could not.

However, as the years have passed and the words haven't come, I have wondered if there would ever be any truth to those words that were spoken to me back to then.

We have been getting speech therapy since Aaron was just a few months old and all along his therapists have told me that he is doing great and they are so proud of him and he is improving so much. And while I appreciated the praise and encouragement, I couldn't help but think:

But he still can't talk!


TODAY Aaron said "Thank You" to me. He didn't use sign language and I didn't prompt him. He was eating breakfast and I told him he was doing a good job using his fork and he looked at me and said "thank you", then went back to watching Blues Clues.

It actually took a minute for me to register that he had actually spoken to me. Then I almost burst with delight.

To be clear, these weren't Aaron's first words ever. He has been saying "Daddy", "Bubba", "Ball", "Pop", "Papa" and occasionally "Mama" or "Mom" for a while now. But they are just single words.

"Thank you" is a phrase.
It has distinct sounds that differ from each other.
And he didn't sign it at the same time.

All of these are huge breakthroughs for us that for me, pretty much equal the excitement I felt the first time he walked independently.

I don't know if Aaron will grow up to be a public speaker or change society in any dramatic way. But he has already impacted many people's lives and he is going to make a difference. Some how, some way, to someone. Even if it's just me. He already has.


Saturday, August 11, 2012

I'm Not Special and Neither is My Kid

First, I want to say this post may be a bit controversial and it may even offend some people. If so, I'm sorry in advance. My intention is not to offend anyone, but instead to give you a glimpse into my life and the lives of many other parents of children with special needs.

Just a few days ago, I read a Facebook post from one of my favorite DS parent advocates, Noah's Dad, asking parents to help him with a list of Top Things NOT to Say to the Parent of a Child With Down Syndrome. While I have heard a lot of sentiments that were listed (thankfully, not all of them because some of them were really cruel), one that is repeated very frequently to many of us is this:

"I believe God only gives special children to special people."

Now, if you don't have a child with special needs, I know what you are thinking: "what the heck is wrong with that?!?" Right? It seems nice and complimentary and typically comes from a good place in your heart.

Well, let me tell you why it's not. Even if you mean it in a nice way (and I believe most people do), what it says to me is this:

"I'm glad it's you and not me"

I'm not special. There's nothing different about me or my family. I have two little boys that I do my best to take care of every day. My son who has Down Syndrome has also been diagnosed with Celiac Disease, multiple food allergies, Sensory Processing Disorder, PDD-NOS (which is on the autism spectrum), Asthma, Sleep Apnea, chronic ear infections and several other smaller issues that I can't even think of right now. We go to therapy four times a week, see 10 different doctors on a regular basis and have to worry about things like how to provide him with the best and most inclusive education while also providing the supports he needs. I haven't even had to go to an IEP meeting yet because he hasn't started school, but let me tell you, just the thought of it is overwhelming.

If this is what it means to be "special", I don't want it.

That's not to say I don't want my son. I love him, I would and will do anything and everything for him that he needs. But you would too if he was your child. That's what we do as parents. I'm not any more or less special than you are because my son faces these challenges.

I wish that I could go out somewhere and allow my child to walk next to me. He is almost four years old. But I can't. He will run away from me. He has no safety awareness. He can't communicate with other people. He is cute and friendly and blows people kisses and they all think it's adorable, but they also wonder why he isn't talking back when they speak to him. This isn't what I want for him. I wish I could take him to the playground and talk to my friends while he plays with the other children. But I can't. He will get hurt or run into the street. I wish I could send him to school without agonizing over what environment is best for him and wondering how in the world to trust these strangers that are supposed to be teaching him. He can't talk to me to tell me what is happening at school.

I don't say all of these things to make you feel sorry for me. While raising a child with special needs is challenging, it doesn't make me special. And I truly don't believe I do anything different than any other parent would do.

People can say really cruel things and by no means is this the worst that I or most parents who have children with special needs have heard, but it doesn't say what you think it does to us. It makes it sound like you pity us. And we don't want pity. We want our kids to have the opportunities and acceptance that yours do. We want friends and family to accept us and our kids and give us support when we need it. Although my outlook on life changed when Aaron was born, I didn't suddenly become someone that was more "special" than any other parent.

If my life or my son's life inspires you or makes you appreciate your own kids more, that's great. Tell me that. If you think I'm stronger than you are, you are probably wrong. I get by, I do what I can for my kids and I try to handle it all. Most of the time I feel like a nervous wreck.

I certainly don't feel special.