Things to Never Say to a Mom of a Child with Special Needs

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If you know a mom who has a child that requires special needs, rather that be due to a disability, rare condition, learning development, medical condition, etc., you probably want to let them know they have your support. Over the past five years, I’ve had many well-intentioned people say offensive and irritable comments to me about my son, who was born with a form of Dwarfism. After talking with fellow special needs moms and reflecting on my own experiences, I’ve compiled ten questions you may want to steer away from.

 

a special needs child with bandages wrapped around his head as his mom is seen in the background

 

 

1. Is it Genetic?

Basically, it’s asking, “how did your child become disabled/special needs” – and it’s your fault. It’s not anyone’s business, and parents of kids with genetic disorders struggle with enough guilt. Also true for parents whose children experienced tragic accidents.

 

2. God only gives you what you can handle.

Caution … this one can cause flames to come out of my head. It implies that God chose me and said, “Hey, she can handle a whole lot of difficulties and stress, so I think I can give her a lot more work to deal with, so I’ll choose her son to have a physical disability and lots of medical problems.”

 

3. You are being too overprotective.

Yes, maybe in your eyes. But yes, my son has a physical disability, so running freely on a playground without parental support could lead to a severe injury. That bounce house could cause severe spinal injury to my son. This is very relevant today with COVID-19. “Most” children with disability and medical conditions are at high risk for having serious effects if contracting the virus. Yes, I understand that your child may not get that sick, but the friends they come in contact with can.

 

4. Saying nothing when your child makes an inappropriate remark.

All kids ask questions without a filter. ☺ Their minds are constantly learning, and they are curious. If your child asks a question or makes a rude remark about another child who may look different than them, please make this a learning opportunity and correct them.

 

5. Using Disability Metaphors.

Are you deaf? Are you blind as a bat? Are you retarded? Midget size. He/she is crazy.
The list goes on and on. I didn’t realize before I had a son with Dwarfism that Midget is a derogatory term. Let’s set by example to our kids and think before we speak.

 

6. Why don’t you have time?

Well, because we just don’t. When our child is not physically with us, we are constantly scheduling therapies/doctor’s appointments and spending late nights researching new clinical trials, adaptive products, etc. Please don’t make us feel guilty, and keep extending the invites. If we can come, trust me, we will.

 

7. You should take care of yourself, so you can take care of him/her.

While this is true for any mom, suggesting an unrealistic getaway or “me time” can be presumptuous. You mean well by this comment, but it’s slightly annoying to us. Yes, I would love a trip to the spa or weekly girls’ night, but then I have to coordinate hours of therapy and doctors visits around it. Plus, I need to find a reliable sitter I can trust so I can feel comfortable being away from my son. I’m tired of explaining to everyone why I can’t.

 

8. You’re lucky you can stay home to help take care of him/her.

While yes, I am very lucky to be able to put my career on hold to take care of my son, trust me, I would love to be anywhere else in the world than sitting next to my son in a hospital bed, at numerous therapy sessions a week, making doctor appointments, waiting on hold with insurance claims that have denied out-of-network service, etc.— not counting the numerous hours of researching adaptable products so my child can safely use the bathroom at school or researching clinical trials that could help my child may have a better future. Please do not assume we “have it better.” Like they say, “the grass is never greener on the other side.”

 

9. I don’t know how you do it. I could never do what you do.

Yes, you could if you needed to. Trust me, I never dreamt that I would need to know the names of all the top medical doctors in my area and across the country. Or know how to draw and give a shot to my son weekly. Caring for my child does not make me a superhero. Just tell me I’m doing a great job instead.

 

10. What can I do to help?

While people have great intentions when asking this question, it can be the most annoying question. As a special needs parent, I get so overwhelmed at times that I cannot think of one thing to ask for. Pay attention to their likes. Bring coffee, flowers, deliver food, and send a sweet text out of the blue cheering them on. These things go a long way.

 

Photo credit: Courtney Courtney Photography

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Erin was born, raised and even attended college locally in St. Louis (Fontbonne University Graduate). She is a wife to Craig, a bonus mom to Chloe (21) and a mom to Teddy (5). The family resides in Town & Country. Erin’s world was turned upside down when she learned her son,Teddy, was born with a common form of Dwarfism, called Achondroplasia. After a few months of struggling with her sons diagnosis, she reluctantly jumped into the special needs world. It’s a challenging and different world, but she is realizing more and more each day that it has just as much, if not more, beauty inside of it. Even though I feel like I’m on a constant hamster wheel of navigating the special needs parenting path, Teddy has taught our family and friends more than we could imagine. Erin is passionate about helping parents teach their kids about different disabilities. She believes raising kind hearted kids starts in their homes. She is also passionate in helping other parents navigate the medical and therapy world. It’s not a world built for the passive type, which she quickly learned. When she is not carting Teddy back and forth to school, therapies, activities and numerous doctors visits she enjoys exercising, walks with her friends and drinking a cocktail while finally watching The Today Show at 9:00pm before bed.

2 COMMENTS

  1. Great advice for all of us that hasn’t had to face your circumstances. William decker is my great nephew and loves his buddy. I think it’s wonderful at their ages they will grow up and be best buddies all of their lives. Thank you and hope your post helps. Cindy Kodros Garvey

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