What Parents of Kids with Special Needs Wish They Could Tell You

A "Special" Perspective | Wichita Moms BlogMy youngest son, now 2, has hypotonia (low muscle tone) and developmental delays in the areas of speech and gross motor skills.  He wears SMO braces and has weekly physical and speech therapy.

The first time I heard him referred to as having “special needs,” however, it was like a punch to the gut.

He isn’t special needs, I thought. He likes playing hide and seek in boxes and laughing at his siblings just like any other kid.  He’s smart, playful, funny, sweet, and attentive…he’s just a little behind.  As time has gone on, I have slowly learned that I was just plain ignorant.  The term “special needs” encompasses far more than I ever knew and needs to be stripped of its negative connotations.  In reality, everyone has special needs.  Some of us need medication, some of us need to wear contact lenses, some of us need physical therapy, some of us need a math tutor, and the list goes on.  We all have strengths and challenges.  I’ve found resources and Facebook groups for parents of children with a wide range of delays, disabilities, and conditions all labeled “special needs”–everything from mildly low muscle tone, apraxia of speech, sensory processing disorders, autism, Fragile X, cerebral palsy, muscular dystrophy, and cancer.

[Sidenote: if you have a child with any kind of challenge, I highly recommend that you search for a Facebook group–there probably is one, and it will probably be your biggest resource and support.]

As my son has grown older, wearing braces with delays that are more evident, I have experienced everything ranging from unintentional insensitivity to great compassion from acquaintances, strangers, friends, and family–all of whom are probably just as clueless as I once was.

Recently on one of the Facebook groups I’m a part of, a parent asked the following question: “What is one thing that has changed your perspective since having a “special needs” child?”  The responses moved me to tears more than once and share more insight than I can possibly give on my own.  With the parents’ permission, I am sharing the responses below a condensed form:

“I was raised to “not stare” and so I would always try to avoid eye contact with people who were “different” in order to not be “rude.” Now, I try to smile at them like I do everyone else, especially kids, and wave, because that’s what I want people to do to my daughter.” 
“I realized that seemingly innocent comments can crush a special needs parent.  Keep it simple, say “your babe is adorable.”  Everyone wants to hear that their child is cute and charming. [My added two cents:  This response works particularly well when you’ve asked a child’s age and the number is much bigger than you expected.  Don’t awkwardly pause or find an excuse to walk away.  Just say, “He [or she] is so cute!”]”
“I often make sure to take a moment and tell special needs parents that “they rock” and are amazing, because it is hard on them as well.  Sometimes it’s just a little note on a car.”
“For me, it has been humbling and hard, so I feel I have gained much more compassion for others.  Life is hard and we are all just trying.  Also, with one of my son’s conditions he is at a higher risk of cancer and has to be scanned every month.  So really grasping that life is fragile and can be so short, and in return taking advantage of each day and enjoying all the little things.”
“I make sure that they know they are noticed and a person, so I smile and say “hello”.”
“I feel like I’m more outgoing because of years of talking to so many people . . . doctors, relatives upon relatives asking for an update on my daughter, and just random people inquiring in general.”
“It has opened my eyes to our true value in God’s eyes.  He doesn’t love us for what we do, or what we can do, but He loves us because He made made us and we’re His children.”
“To never judge a parent with a screaming child.”
“Anything can be done one step at a time.  The one step might get done in a split second or in 5 years, but never stop trying.”
“I’ve always had an inclusive mindset and work in and around the advertising field, but I now see how important it is to represent people of all abilities in ads and illustrations. Showing a kid in glasses, a child with leg braces or a wheelchair goes a long way.”
“That you never know what someone is going through.  That you can’t judge a moment or situation as bad parenting.  That parents need support, not judgment.  To embrace each day and be thankful for the small stuff.  That I am stronger than I think I am.  Accepting people for who they are, not what you want them to be/dreamed of.  That there are cruel people in the world, but that’s a reflection of them, not me.”
“I’ve learned to live “today” and not focus on tomorrow.  Today we have a beautiful little boy who makes us laugh. Today we are happy and making it through. I don’t have time or emotional energy to think about when he’s 18 or 45.  Today is what matters.”
“I feel like I have some sort of unspoken bond now when I see other special needs parents. People don’t realize how much a simple “you’re doing great” can make such a HUGE difference to someone’s day.  Weeks ago a friend told me how brilliant a job she thinks I am doing and I burst into tears.  Now I try to do the same for others.”
“I don’t avoid eye contact. I want to be a positive connection in that family’s week!”
“I really relate to others said about “not staring.” I admit I used to have trouble looking at people who were different, and used “not staring” as an excuse for “not looking.” But it was hard for me– even in photos online, for example.  It was hard to see babies born early, or with differences or malformations. Now I have read so much about genetic disorders and birth defects that I don’t feel like I need to look away.  I can see someone who is different as beautiful and don’t feel like that’s just a cliche thing we say anymore.”
“You aren’t doing anyone a favor by not inviting them to things… if they are too busy, they won’t come–but don’t assume and leave them out! Also, remember to think about what you say or ask before saying or asking it.  It can and will be over-analyzed and a seemingly harmless comment can really hurt.”
“I embrace the opportunity to interact with special needs children, because that’s what I hope and pray everyone will do. I had a chance meeting with a business partner last week at a local restaurant. His oldest is special needs. After he introduced his family and we exchanged pleasantries, his daughter reached out and grabbed my hand to kiss it. If that didn’t make my day!”
“My granddaughter has (they think) Charcot-Marie-Tooth Disease and I pray everyone will accept her for who she is and what amazing things she has accomplished. One of my favorite quotes is, “Be the change you wish to see in the world.”
“I remember being on a plane with my kids, my hypotonic baby was 3 month at the time and wouldn’t stop screaming. I was doing everything I could just to keep it together and a fellow passenger said, “You’re doing a great job.” It meant the world to me.  It’s amazing how saying something very simple makes such a huge difference.  This was almost a year and a half ago and I’m still grateful for that kindness.”

As a newly-minted “special needs” parent, I can tell you there is so much truth in all of these statements.

Nothing hurts more than to have someone overtly avoid my child or focus their eyes on his cute little braces and slow walk, while overlooking his beautiful blue eyes and cherubic smile.  For my perspective, I invite you to see and acknowledge every “different” child you see with a smile, hello, and even a kind or conversational word to the parent.  Let your children see you do this.  Let’s keep chipping down the walls until acknowledgement, education, inclusion, and support is the norm.

 

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One Response to What Parents of Kids with Special Needs Wish They Could Tell You

  1. Janel August 28, 2016 at 6:43 pm #

    Thanks for your post Jordan. I have experienced many of the similar issues that you have with raising a special needs child. Nothing is more important than hearing words of encouragement and knowing what best fits our child to enable their growth and independence! Keep up the good work City Moms Blog sister! Janel N. Columbus Moms Blogger

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