Monday, March 9, 2009

Why My Heart Breaks at Times

Do you have a child or other family member with disabilities, or do you know know someone with disabilities? If so, you may see a glimpse into their lives, and how they feel about themselves, or how they feel about how they are treated by others.

I have two boys with disabilities. Our two year old, whom we are adopting, has tactile defensiveness, which means he has major issues with textures. He hasn't learned how to chew properly, so weird textures in his mouth tend to make him gag. So, even though he is 28 months old, he is still eating baby food, and drinking from a bottle. When we first got him last May, he wouldn't touch a sippy cup, let alone drink from one. He's come a long way since then, but it's sometimes difficult having to explain why my almost 2-1/2 year old still eats baby food, and not much table food. Or why NOT to give him goldfish crackers in kid's church. (Because he doesn't chew well, but he likes the salty taste, he will stuff them in his mouth and basically let them stay there, and then ends up gagging or choking on them.)

Our 15 year old was born with only 1/2 of his heart and as a result, has had 5 strokes...two major and three minor (if you can call a stroke "minor"). The two major strokes took his speech and hearing, (although his hearing came back, he still has many problems with processing sounds--phonics for instance, and has problems with his speech), they took a lot of cognitive skills, and they paralyzed his entire right side. He is able to use the right side, but not much. He walks with a very pronounced limp, and tends to drag his toe on the right foot. His right hand is practically useless right now. For one reason, he won't do the strengthening exercises, but for the other reason, he simply can't move the fingers and hand like most people can. He wears a brace on both the leg/foot, and on the hand.

Other than the obvious physical issues, Brother Bear looks like a normal 15 year old kid. But he is in a special day class in high school, and hasn't met a whole lot of people outside of that class, other than the guys in the Bible club, which Brother Bear voluntarily attends. There are many times when he comes home from school with tears because he has eaten lunch by himself, or because of the way someone has treated him, or because he so BADLY wants to play "real" basketball or football.

My heart breaks for him! I had a hard enough time in high school, because of being "different", but without disabilities. I never "fit in" quite right. I didn't wear the right clothes, or it was because I am SERIOUSLY fair-skinned, or I was slightly (and really only SLIGHTLY) overweight as a teen. Whatever the reason, I got teased. You know what I'm talking's the norm. The part where someone has to make someone else feel inferior because they are lacking self-confidence themselves.

But Brother Bear wears pretty much the same kind of clothes as many 15 year old boys, and he tans really well, and he is tall and lean, with even the occasional muscles showing through. He's a good-looking kid.

For some reason though, MANY people have a really difficult time knowing how to relate to people with disabilities. I know...I have been one of those people in the past. What do you say? What do you NOT say? How do you act? Do you stare? Do you look away? Do you ignore? I think it may be because no one has educated us on what to do in those situations. People with disabilities are people. Just like you and me. We ALL have things that we consider our "issues", right? Things that we think people wouldn't like us for. Things that we consider "ugly" or "stupid" or whatever. If everyone could understand that this is something that humans constantly deal with, then maybe we would be more comfortable around those who have the more obvious physical or mental disabilities.

So, what do we do? I think there are a few things. Especially if you are a Christian. Educate your children. Teach them to be kind and compassionate to everyone. Teach them to not be afraid to go up and talk to someone with a disability...especially if it's another kid at their school. PLEASE teach them that these kids are just like them, but that God has just given them something different to deal with, than what your child must deal with.

CVS Pharmacy has a website, CVS Caremark - All Kids Can, that deals with exactly this with disabilities. They are committed to making life easier for children with disabilities. They are striving to do what they can to help out, and to educate:

"We recognize the importance of providing children with disabilities the opportunity to participate in everyday activities. CVS All Kids Can will support activities that promote the value and importance of inclusion. Through greater awareness of the needs of children with disabilities and support for programs that bring children of all abilities together, CVS All Kids Can will touch the lives of many children."

I hope that you will go check out the website, and I hope that you will put some thought and action into doing what you can to reach out to those with disabilities, and to teaching your children or grandchildren (if you have them) how to love, and show kindness and compassion to other children (and adults) with disabilities. I know that this will go a long way to ease the heartache that these people and their families deal with on a daily basis. I know that it will help to ease my heartache, and that of my boys.

God bless,
Mama Bear


  1. My son has Down Syndrome and I also wrote on the All Kids Can topic today.
    Thanks for sharing your story.
    I'll say a prayer for your son.

  2. Thanks for sharing this with everyone. It is heartbreaking the way people get treated. I will do my best to teach Shiloh to treat everyone equally. Whether they look different or act different or whatever. We're all people and we all want to be accepted.