What’s Wrong With Him? {Why I Encourage Curiosity About My Child With Special Needs}

Why I Encourage Curiosity About My Child With Special Needs

After the reality of having a child with very complex medical and developmental needs sank in, I decided that I was going to bring my sweet Connor in his bright blue wheelchair everywhere I could. I wanted to introduce him to everyone and everything that makes this world go round. I knew it’d be tough (like places that are not handicap accessible, which by the way STINKS), but I was prepared. I was going to teach the world about my son.

I started noticing the stares from others fairly quick, from adults and children. I know they are curious stares, but what hurts the most for me is when certain parents reprimand their child for staring at mine and they don’t satiate their child’s curiosity. I admit I was this parent with my oldest son before I had Connor. I get it. They don’t want to have a rude, staring child so they quickly and quietly chastise them and whisk them away from the situation. And Lord forbid the kid cry out “WHAT’S WRONG WITH HIM?” Am I right? Don’t worry my fellow parents, I understand why you do this…

Play this scenario out in your head: I’m pushing my blonde haired, smiley, bubble blowing guy in his bulky blue wheelchair through the grocery store. I stop to browse the latest organic baby food and your 4 year old spots us. Her eyes zone in on my guy and she takes it all in. She steps a little closer. She inspects every inch of Connor’s chair and is wondering why? She’s curious why this boy, who is bigger than her, is riding in this stroller looking chair on wheels and making crazy sounds. So she tugs on your shirt and loudly asks, “Momma, what happened to him?”  You look up to see us just a few feet away and your heart drops. You think, “Oh God, did they just hear that?” You quietly hush her and hurriedly go on your way… praying we didn’t notice.

This scenario is one that I see way too many times and it hurts my heart.

Let me tell you why I LOVE when your child blurts out the obvious question.

It gives me a chance to explain my child to yours in a positive way that he or she can understand so that they won’t be afraid or sad. It lends me the time to introduce him or her to my Connor and let them say hello, while I point out similarities between them (they both have blue shoes or both like Thomas the Train). And most importantly, it provides a moment to ignite compassion and love for people who are different from them. This one tiny opportunity can be a life long learning experience teaching that people with special needs are still people with feelings and deserve our respect and attention, rather than to pretend they aren’t there or that we should feel sorry for them.

special needs children

Often when we hush our child from acknowledging people who are different (simply because we don’t our child to seem rude), we unknowingly make our kids take on a negative connotation for these differently abled people. I seek out your beautiful, staring child and anxiously await the question that is swirling in their mind.

I love their blunt little questions because it is the start to acceptance!

Let me say here that not all parents feel the same way I do (to each their own way of parenting and dealing), but I am confident that the majority of us parents who were blessed with a child with specialties would encourage your child’s innocent questions where they long to understand. My deepest hope is that you are teaching your children to embrace the acceptance of others.

Start a discussion with your child about children and adults who are different than them, encourage them to ask you questions, and be sure to explain that different is wonderfully okay! I want you to teach them that these children often love the same things, have the same feelings, and they love to be included just like your child does! When approaching a person with special needs with your child please express happiness, rather than sadness. A smile, kind wave, and hello can make all the difference in the world.

special needs children

Children truly want to understand why others are different from them, so I think it is our job as parents to encourage their acceptance … and perhaps maybe we can learn from them too.

And no, children with special needs are NOT given to special people.

Katie
Katie, a self proclaimed "momma bear", enjoys living her busy, country life with her husband of 10 years and 3 sons just outside of Baton Rouge in Tangipahoa Parish. Katie attended Southeastern Louisiana University where she obtained a degree in Elementary and Special Education. Little did she know how her love of children with special needs would grow shortly after she graduated college. Her middle son, Connor, was born with a rare brain disorder called Schizencephaly-he is wheelchair bound, nonverbal, blind, battles retractable epilepsy, and is fed through a feeding tube. Katie and Connor endure the many trials they are put through with a smile and joy in their heart. Along with being an active member in her church and working for an online public school, Katie regularly advocates for those who experience developmental disabilities at the Louisiana State Capitol. She is the Region 9 leader for Louisiana Citizens for Action Now (LaCAN) and is a member at large for the Governor’s Advisory Council on Disability Affairs. When life's challenges seems too much to bear, Katie remembers this quote to keep forging ahead and being the voice for those who have none, “God often uses our deepest pain as the launching pad of our greatest calling.” -unknown

15 COMMENTS

  1. Oh, Katie! If the world was filled with people like you, we would all be so much the better for it. Fear makes us do such stupid things. The fear of “embarrassing” a special child or their family will never, NEVER stop me from approaching them again. In a non-stalker way, of course. Lol. Love you and Connor man.

    • Aw Heather! Thank you so much!! That means a lot to me. I’m so glad that I could give parents of “neuro” typical children some insight of what us parents of children with “specialties” think. I LOOOOOOOVE when people (adults and children) ask me questions! I could talk about Connor for dayyyyssss! 🙂

  2. This hits home for me. I love to answer questions about my oldest. In fact, I make an effort to make eye contact with a smile with the embarrassed mom to reassure her that all is well. Thank you for your post!

    • Katie (nice name, eh)! I do too!!!! I do it all the time!!! I figure as long as I give them a smile it’ll reassure them! 🙂 I love catching the eyes of little kids as they are looking at my boy and coercing them into a conversation, with their parent nearby of course! haha!

  3. AM A SINGLE MOM TO A DAUGHTER NAME MANILDA DEJESUS WILL B 29yrs THIS SATURDAY FEB 21st–BORN WITH CTI-TU-CHAT (cat cry )SYNDROME–WE LIVE IN SMYRNA,Ga–I CAN RELATE TO YAL STORIES–AND WE’LL B HONORED TO B PART OF YAL LIVES

  4. What a beautifully written post that adults and children alike can learn from. I had a very profound moment (although admittedly it came way to late in my life) when I truly talked to a friend of mine that has a disability. He shared that often people with disabilities feel almost invisible because since so any people don’t know what to say and don’t want to stare, they do nothing at all. This has stuck with me and I try to go out oft way now to say hello at the very least to strangers who may have a disability , dis figuration , etc whose also feel this way. On a few occasions, I have even asked about it and 9/10 times they thank me for asking. I love your idea to teach children to see commonalities (blue shoes!) as well as differences and it most of all that it is OK to ask. Next time my 2 year old asks an “embarrassing” question you havey commitment to smile and engage your son or those other special kids like him!

  5. Hi Katie! Beautifully written article. This might sound silly, but do you have a suggestion for a ice breaker/intro type question. We’ve smiled and made eye contact at the playground but sometimes if my kid is shyly but clearly just staring I’m not sure what to say. She’s not the type to ask anything out loud. (But my boys are almost 3 so I’m sure we’ll be there soon!)
    We were in an awkward situation once, in the grocery line. I had two babies recently released from the NICU, still hooked up to monitors in the stroller and my oldest was hiding behind me but pretty much staring at the man behind us in his chair. He was looking at us too so I tried to just talk to him and his wife about the babies but I really wanted to introduce her. I later realized it was Steve Gleason-talk about missed opportunity-you know he would have been open to educating a kid!

    Any suggestions for the awkward staring kids mom? It’s honestly something I’ve always wondered. (and hopefully not a totally offensive question)

    • Hi Clare!!! First, thank you!! And I can so totally relate to what you are saying! I’ve seen these kiddies hiding behind something at the park glancing over at us and it makes me giggle! And the moms just smile probably wondering the same thing as you! I always try to say hi or “would you like to meet my handsome man?” But I’m a very social person! I had one mom approach me recently actually! I noticed her little girl staring then shortly after they walked up to us and the mom said, “Hi! We were wondering if we could meet your son and make a new friend?” I almost fell off the bench from the awesomeness! I loved how she approached me, but I loved how she did it even more! I’d totally recommend something like this! Or shoot, just go sit by them and start up small talk! It is very refreshing to actually talk to other moms at a playground, most are too shy to come speak to us. If the mom is 1/4 like me, she could talk about her kid for HOURS!!!!
      And whoa baby!!! Steve Gleason!!! That’s awesome, but I’m so sorry you missed the opportunity!! 🙂 Maybe it’ll happen again, huh!
      Thank you for asking this amazing question! Your daughter is lucky to have a mom like you!

  6. I absolutely love what you wrote. I am sure I felt the same way and somewhat shy around others with my three older girls, but when William was born almost 9 years ago with Down syndrome things changed so much for us. I love when children stop and ask or want to talk to William. I could talk about Ds all day if that is what others want to hear. Its all about acceptance within our community and surroundings. I am also a graduate of SLU.

    • April,
      I’m so happy to see your comment and know that you feel the same as me! I could certainly talk about Connor and his cazillion diagnoses all day long!!! Acceptance is key and teaching our kiddos early is so important!
      Whoop Whoop for SLU!!! Lion Up! 🙂

  7. What a beautiful piece. Well said from the heart. We need to bring this next generation up to be much more accepting than in the past, as well as more knowledgeable. Let’s break the barriers down and end the stigma.

  8. Love this! I always tell my little girl to say hello, but I have to be honest when I say I’m not sure what to answer if she were to ever ask that question (she’s only two)? Much love to you and your sweet family!

  9. I whole heartedly agree. Even more, I beam with pride when my son (8) exudes the confidence in himself to explain why he has hearing aids or gets injections. I am grateful for the moments he gets to speak instead of the moments parents scurry curious children away. Thanks for writing this!

LEAVE A REPLY

Please enter your comment!
Please enter your name here