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.