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I look into my daughter’s crowded class and she is the only one in a wheelchair (out of 15 kids). When she first rolled into the room, everyone looked at her in her wheelchair. It was the elephant in the room.
At two years old, it was the first time they saw someone their own age in a wheelchair. I could see the questions forming in their eyes one by one. Less than 1% of the population under 5 years old is disabled.
Most people may not even know a child with special needs. So, how do you handle when people are rude or ask questions?
6 Tips to Help You Explain Your Child’s Disability to Strangers without Oversharing
1.You don’t owe anyone an explanation
Yes, you heard me right. You don’t technically owe ANYONE an explanation. It is no one’s business what condition your child has.
You don’t walk up to random strangers and ask what their ethnic background is or when what their GPA was in high school was. Some things just aren’t anyone’s business.
2. Your child is watching you and seeing how you will react
Whenever someone asks about my daughter, Ryann, I try to put her first. Even though the person may make me mad enough to scream, I have to remember, that one day she will leave my house and be on her own in the world.
She is technically the one who deals with spina bifida 24/7 and will for the rest of her life. It is a part of her and she can’t change it.
I want her to know that there is nothing, in fact, wrong with her. She was made perfect in God’s image. She is PERFECT. So, with that in mind, I try to watch how I react and respond.
3. Most people aren’t trying to be rude
Now you are always going to have your jerks out there. That’s just how it is. However, most people aren’t trying to be rude. They are just really inquisitive or nosy.
Some people who ask questions have a loved one with a disability and maybe they think your child has the same disability as the child they know, and you are kindred spirits. This has happened a few times.
Kids fit into this category more than adults. Kids are naturally inquisitive. They are going to ask questions. They want to know why your child is “different”. They aren’t trying to be mean or rude.
If you tell them why your child has a disability, then they will more than likely be like oh okay, and move on.
Just to be completely honest here…. some kids just don’t have any home training. It’s not their fault. It is their parents. So just try to be patient with them.
Put the shoe on the other foot for a second. They are just asking questions. I would rather them ask questions than assume or talk to someone else less knowledgeable about my daughter or her condition.
If you bite their head off when they are just asking a question, it will give them this weird stigma about people with disabilities. I know you can be sensitive about your child. (And that’s OKAY).
I am the first one to stand up and say that I am. I mean, I am the one that has been with her since she was first created. I carried her around for 9 months, I have been with her with every hospital stay, every sleep study, every surgery, a ton of her therapy appointments, etc. I HAVE. NOT these strangers.
So, with that being said, I am saying that you are more emotionally vested in your child. They aren’t. They don’t know the background story. They don’t know the amounts of sleepless nights you had because of hospital stays and worry.
Don’t take it out on them. Just take a deep breath before responding. It will help dissipate your frustration or whatever other emotions you are feeling. This will help you respond in a more effective (less reactive) way.
4. Use the questions as a learning opportunity
Questions are a great time to educate people. They are just asking questions and most of them aren’t trying to be rude. You can also educate your little one in the process too.
She will hear you explaining her condition to other people and she will know what to say in the future when she gets ready to explain it herself.
It’s kind of like people explaining things like drugs, alcohol, and sex to their children. Would you rather them hear it how you understand it or hear it secondhand in an incorrect way?
You have the opportunity to say a bunch of positive things and tell someone what spina bifida is the CORRECT way is instead of them getting misinformation somewhere else.
Think of it like a public service.
5.Some people just don’t get it and you are wasting your time
This one is a hard pill to swallow sometimes. Especially if you are a perfectionist. You want to “fix” everything.
But let me tell you something. You can’t fix everything. The world isn’t perfect. Some people are just ignorant or stupid. Or both in some cases. You can’t change them, and you are wasting your time. Your time is precious, and your time would be better spent elsewhere.
Like that time my daughter was discriminated against by a daycare. The lady at the daycare was so rude and ridiculous, that it would have taken YEARS to bring her up to ground zero.
Ground zero being where you have no feelings about disabled people. Like you don’t hate them, but you aren’t obsessed with them either. You are just kinda in the middle.
I would have wasted my time trying to talk to that lady and most likely would have blown a head gasket. It wouldn’t have been pretty for sure. She made me so mad. I just had to walk away peacefully.
Just let go and let God, right?!?!?!
I had to remind myself that SHE was the one with the problem, NOT my daughter. She is the one that is missing out on knowing a pretty incredible human if I do say so myself! Her loss.
If you don’t get anything out of this article, just remember you DON’T owe ANYONE an explanation about your child’s condition. But if you are in the mood and want to explain it and help normalize disability, then, by all means, explain away.
One of my favorite tips is to re-word the person’s question if you don’t like how they word it. It isn’t rude, but it does give them guidance on how to word their questions in the future.
For example, the dreaded “What’s wrong with her?” question. I always say, “Oh nothing is wrong with her, but if you are asking what her diagnosis is, then she has spina bifida”.
6. Put yourself in your child’s shoes
When someone’s asking a question about your child with special needs (even close friends or family members), put yourself in your child’s shoes.
If you wouldn’t want someone to know the same thing about you, don’t share it. If your child has a certain medical procedure they have to do that you wouldn’t want everyone knowing about you, then don’t share it about your child.
When someone asks you a questions, say would I answer this or want someone to know if I were the person with the condition?
This is just a good filter to run things through when answering questions or sharing information about your child.
Less is more. Don’t go blabbing everything about your child. They deserve some privacy and respect. It’s not your job to educate the whole world on your child’s condition. They can just Google their question.
There’s a fine line between sharing your child’s condition with the world to educate them and normalize disability and it not being your story to tell.
Just remember that your child’s life, diagnosis, and medical condition are THEIR STORY and not yours. When your child is too young to let you know, you have to just make the best decision you can as their mom.
When they get older, you can discuss with them what they’re comfortable sharing.