9 Things I’d Like People to Know When Interacting With a Parent of a Child With a Disability

As a mom of a child with a disability, I have heard many comments since my child was born. These comments come from friends, co-workers, acquaintances, strangers and family. In fact, many of the comments used to be overwhelming. It was as if some people didn’t know how to have compassion for a parent who was going through one of the most difficult times in her life. Their words used to make me feel as though I was not doing the best I could. I often felt as if no one understood. It seemed as though I was the only one in my world going through this dilemma.

I would hear things like: “You are so strong.” “Your child does not have special needs, there is nothing wrong with him.” “You are just over reacting.” ” You are too protective.” “He doesn’t have a medical condition, all boys act that way.” “He needs to have more social skills, he will not know how to live in the real world.” “But…your child is smart.” “You do a good a good job handling your situation by yourself.” “You are making up excuses.” “Most of the way he is, is your fault anyway, you smother him too much.” “Maybe you should have waited until you were married.” And before he was even born I was even told I should have an abortion.

I have spoken to so many moms of children with disabilities, and most of us have heard the same, if not similar responses.

If you know someone who parents a child with a disability, this is what you can keep in mind:

1. Our child means the world to us.

We will stay up all night, spend weekends and days researching different terms we may not understand in hopes of finding a solution to our problems. We love our children with all our heart, and want to see them live a good life.

2. Sometimes we worry we might not be doing enough.

There are many resources out there and many we never hear about until another parent brings it up. At that point, we may reach out to physicians to determine if this, too, could possibly help our children.

3. There are times when we are strong, and times when we are weak.

We prefer to have people around us who can recognize this and know when to speak and when to listen. We do not always need another opinion on what we should do or shouldn’t do; what the child should or should not eat; what type of clothes our child should wear; what activities to become involved in. We just need someone who will listen and who provides continued encouragement.

4. We would love to have a “me” day.

If you can kindly lend a hand every now and then, we would greatly appreciate the kindness. It’s not often we want to be away from our kids, but would love to visit the spa, have a date, or a girl’s night out sometimes. If you can provide this assistance, we would love that!

 

5. We appreciates words that will uplift us rather than tear us down.

With all we might have to endure on a daily basis, the last thing we want to hear is what we are not doing properly. Most of us know there is a right way and a wrong way to make remarks, but some people have not quite figured that out yet. It also helps perhaps if you become a little bit more familiar with the child’s developmental delays, learning disabilities or needs before you say to the mom that her gut instinct maybe inaccurate.

6. Please do not say, “It doesn’t look like your child has a disability.”

I have been told, ” Your child does not look like he has a medical condition, he looks just fine.” Well, there are many mental illnesses or disabilities that do not have a “face,” as I call it. So, you may never know by looking at a child is they have any medical or neurological challenges.

7. We realize we are not perfect and we love having a support system.

In my opinion the only perfect person who walked this earth was Jesus, and therefore there is not one perfect parent in the world. As parents kids with disabilities, we are no different, we make mistakes. The best thing you can offer is support. We want to know that you have compassion and that you actually care. So if you do not have anything supportive to say, then it may be best you do not say anything — it would really help her a lot.

8. We spend a lot of time with our child.

There isn’t one person in the world who will love our child like we do, understand their challenges as deep as we do, advocate for them daily, be there through the rough days and nights when our child is sick, teach them in love, and enjoy every moment with them. To tell a parent that he or she needs to (fill in the blank) because they spend too much time with their child is offensive.

9. Don’t say, “What is the name of that thing your child has again? Im sorry I always forget.”

I think this is so rude. Especially if you have known the mom and child for years and you still do not know the child’s disability. I would really be skeptical in leaving my child with anyone who has not taken the time to educate themselves. My mind would not be at rest the entire time I’d be away. I believe if you are sincerely interested in being a trustworthy friend, family member or caregiver, it’s imperative you at least remember the child’s medical condition.

So when a mom is struggling to use limited resources and is reaching out for help, the last thing she wants to hear are negative comments. Especially when she is trying everything in her power to help her child. She is just like any other mom, wanting to raise her child successfully but the effort requires more determination, research and so much more in order to provide her child with the best supports for a successful life.

How about you, what are some things that have been said to you? How were you able to remedy the situation?

A version of this post appeared on Tiffany C. Everette’s website. 

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