Walking In Their Shoes: What Special Needs Parents Wish You Knew

Photos included in this article are from special needs families who sent me their favorite family photo.

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When I made the decision to try and become a mom, I was naïve. My world growing up had been sheltered from what was different. I had no idea what path my future as a parent would take and let’s be clear, I had no say in the matter anyway.

My son’s premature birth thrust me into parenthood with all of the force of a hurricane.

All the cliches applied, world turned upside-down, rug pulled from underneath my feet, my world shook. Motherhood was never going to be what I had imagined.

Kids one and two in NO WAY prepared me for number three. I still daily throw my hands up in surrender, admitting that I don’t know what I’m doing half the time while the other half I know I only got lucky that something worked.

It really is true that you shouldn’t judge someone until you’ve walked a mile in their shoes. These days shoes are another tool in my parenting arsenal, and I’ve walked oh so many miles on this special journey.

Gone are the high heels, cute chunky wedges, and adorable strappy sandals of my pre-mom days. Running shoes in the entry closet and flip flops by the door are my standard go to. Depending on what is going on, I have to be able to dash out the door without a second to think to catch a running child or be prepared to be on-the-go from before sunrise until long past bedtime.

There is such a different parenting path that some of us must tread. We envy the everyday, mundane easiness that you take for granted. Imagine, if you will, trying on the shoes of the parent you normally pass on Meet The Teacher night that you avoid making eye contact with. Think about what is in his/her family’s future for the school year and how it would be so much easier if their child was treated and given the same opportunities as yours. You may not fully grasp the situation, but if you truly listen you’ll see that there is so much more to those shoes that they wish you understood.

In light of that, here are a few things that special needs parents want you to know, straight from their mouths to your ears:

Unhelpful Samaritans

We’ve all encountered them, those well-intentioned strangers (and sometimes friends and family) who know just the thing to help make our lives easier. I assure you some of those intentions we’d love to tell you what you can do with them.

“It used to make me crazy when people would see Addie having a fit in public and would try to help. She would throw these massive fits, always in public, and people would try to give her candy or bribe her all the time. It made it so much harder!” – Rachel C.

 

Unintentional Rudeness

Now even I know I’ve managed to stick my foot in my mouth on more than one occasion (and although I sincerely meant no harm), words can hurt or not be taken as innocently as you meant them to be.

I remember teaching a Sunday School lesson about thinking before speaking. Words are like toothpaste: once it’s out of the tube, you can’t put it back in. So before you let that question come blurting out, think.

“I hate when people ask, ‘Was it something you did? Is it preventable?’” – Ariel M.

“When I tell you my son is developmentally disabled, please don’t say, ‘Oh, I’m so sorry.’ Why are you sorry? I’m not. I wouldn’t change a thing about him.” – Jim C.

“Saying ‘You can’t even tell she’s autistic’ isn’t received as a compliment. It is insulting to the challenges they have to overcome to appear ‘normal’.” – Poppy W.

Limited Resources

Special needs families rely on insurance, grants, and public awareness to make ends meet and a lot of things fall short of our needs. Resources aren’t always available in our areas.

“Childcare is a challenge because you can’t just sign your kid up for a summer camp or after school care in many cases.” – Gretchen M.

“Medicaid doesn’t cover everything. Medication alone for our family per year is about $30,000 if we didn’t have insurance.” – Jamie T.

“We don’t automatically qualify for Social Security disability benefits. As a single parent and teacher, I have always ‘made too much’ for my special needs children to qualify.” – Dedee C. 

“Changing tables are not made for kids after a certain age.” – Anonymous 

Parenting Is Hard

We face criticisms from others as well as ourselves. Please don’t make assumptions when you see a family out and about.

“I worry for my non-special needs children because I’m afraid they will always feel less than and second rate.” – Carrie G.

“People will have particular care and concern for your ‘special needs’ kid. My other kid picks up on that, big time. Ask about and be equally concerned about all my kids (if you’re going to ask about them). Everyone focused on one kid and the other felt invisible and forgotten.” – Poppy W.

“My son isn’t a bad kid, he is just different.” – Breann R.D. 

“Don’t see a child out in public that is acting out or acting with different behaviors than other kids and point and talk under your breath about my child or myself.” – Aimee G

“Her meltdowns don’t mean I’m a bad parent.” and “I may look like I’m holding it together…I’m not!” – Rebekah B.

“It is so stressful trying to do normal things sometimes!” – Hannah S.

“A lot of people do not realize it, but when you first get the diagnosis, as a parent you go through the 7 Stages of Grief.” – Amy B

Gifted and Special

Special needs does not mean that the child is delayed in all aspects of their development. While a child may have issues with social situations for example, they could be quite the little genius in certain academic subjects.

“Gifted and autistic are not mutually exclusive- you can have both in the same brain, and many do. Being gifted does not somehow make it easier for him to overcome his struggles, if anything it makes people more likely to dismiss his struggles. ‘He’s so smart, he’ll figure it out’ is not a helpful statement when someone has a concern.” – Michelle K.

The Forgotten Normal

We want for our children what everyone else has for theirs. Whether it is simply having friends and sleepovers or being including in school events and sports teams we desperately want our children to have a sense of belonging. 

“I wish my daughter had a friend, just someone to talk to.” – Sheila B.T. 

“I didn’t want people to always say ‘That’s Anna’s son!’ I wanted people to say ‘Hi Rick!'” and “Inclusion is just a word if it’s not implemented.” – Anna C.

“Our kids have feelings too. You may not think they notice the lack of people at their birthday parties or the lack of invites to attend social gatherings but they do.” – Jamie T.

“It hurts to watch high school events like ‘favorites’ and ‘awards night’ etc get posted and know that your child was never even invited to participate in those events.” – Dedee C.

“One of my biggest concerns is that he will not have friends because upper grade level kids are not as accepting.” – Caitlin M.

“Things that you take for granted with your child are a true challenge that are taking YEARS of therapy to try and master (eating, getting in and out of vehicles or buildings, holding a pencil).” – Gretchen M.

We Want the Same Things You Do

We want our children to have unconditional love, a sense of belonging, and a belief that their dreams are within their grasp. We are normal parents in unnormal circumstances, but we’re the same as you. 

“When I think of all I didn’t know 9 years ago, B.D. (before diagnosis). The wait times, insurance, the doctors, the hours and hours of therapy, the meltdowns, the self-harming, and so much more.

I wish I had the person I am now to help me then!

Help me to be more forgiving of myself in those early years. Help me to understand that it didn’t need to be perfect. Help me to know that I was going to make mistakes, and that was okay. Because I am so much more confident as a parent now than I was. I know I am not a perfect Mom, but I am the Mom that both of my children need, and that is enough!” – Diana Loader