13 Things Parents of Kids With Disabilities Want You to Know

I believe most people know someone or have a friend or family member who has a child with a disability. I also believe some people don’t know what to say or do when it comes to disability. Being a mom of children with disabilities, I have seen many people completely avoid situations where they would have to be around us because they don’t know how to act or respond. Sadly, I have seen many people disappear from my life after having children with disabilities and know of other people who have had this experience as well. I want to help those who don’t know what to say to families like mine.

As a parent of children with disabilities, this is what I want you to know:

1. Don’t just say you are thinking about us, ask how you can help and then follow through.

If you ask, we won’t ask you to do anything you can’t do.We might not need help, but the thought matters. Sometimes we just need a friend.

2. Ask us about our kids.

We love talking about our kids as much as any other parent. We want to talk about any new milestones or something good that happened. Things that might seem small to a typical parent could be a big deal for our kids, and we want to share the excitement with you.

3. Not all disabilities are visible.

Too often I hear someone say, “but he doesn’t look sick, he looks fine to me.” Unless you look for the scar on my son’s head, you wouldn’t know he had brain surgery, but that doesn’t mean it didn’t happen.

4. Things can change in a second.

My child could be outside playing one day and the next be fighting for his life. There are good days and bad days. On our good days, don’t think things are “all better” or that we are “faking it.” Remember, just because you can’t see it, it doesn’t mean it’s not there.

5. Don’t minimize our concerns or worries.

Don’t tell us, “Things could be worse!” We know things could be worse, but right now this is our worst and we need your support.

6. Having a child with disabilities is not “the worst thing that could happen!”

It’s actually a learning experience and a chance to grow spiritually, mentally and emotionally. Many parents express having a child with a disability is the best thing that’s ever happened in their life. Personally it has taught me compassion, patience and acceptance. Don’t look at me or my child with pity. My child is a rock-star and stronger than you’ll ever know. Having a child with a disability is not “so sad.” It is a part of the life we live but it does not define it.

 

7. Don’t say our kids will be “doing xyz before we know it!”

While some of our kids may be a little behind and will eventually do those things, there are many kids who will not. Instead, lets focus on what they can do. Also please don’t mention what my child can or cannot do in front of him or her. Don’t treat my child like they are any less than “typical” children because they are not; they’re just different.

8. Just because a child has disabilities doesn’t mean they can’t talk or understand you.

Yes, there are many kids that may be unable to talk and some who might need help to understand, but don’t automatically assume they can’t. If you want to know how they are doing, ask them; they will tell you in whatever way they communicate how they are doing. They may be verbal and tell you, they might use a communication device or they may just use gestures or facial expressions — but they will tell you. And please don’t talk about them like they aren’t there.

9. Don’t judge me for decisions I have to make.

As parents of children with disabilities, we often have hard decisions to make. We put a lot of time and thought into these decisions, and often have a hard time with our decisions. There are times we will feel overwhelmed and over our head. We often criticize ourselves an may doubt if we made the right decisions — we don’t need you to do that for us. We have to remember to give ourselves grace.

10. We do not know what the future holds.

Asking us what is going to happen next or if they will outgrow something might result in no answer. While we may think we know something, we really never know until it does happen. The future can be uncertain and we have to take things as they come, day-by-day.

11.  Don’t get mad at us when we can’t make plans or have to cancel at the last minute.

We really do want to hang out with you or attend your event, but sometimes things change quickly. Our kids health can go from good to bad in the blink of an eye. Because things can change so quickly, it can be hard for to schedule things ahead. We also have to work around therapies or doctors appointments on top of regular life. Don’t stop asking us to do things even if we might not be able to do much. So many times we often get left out because people assume we won’t be able to attend. Just ask, even if you know we will say no — we still want to be asked.

12. We need friends, too.

Parenting kids with disabilities can be isolating; it can be a lonely world. We need friends.

13. Include us.

We all want that feeling of belonging. When you can, include people with disabilities in neighborhood play dates, parties, etc.

A version of this post appeared on Crazy Mommy.

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Thinkstock image by Martinbowra