Why Being A Parent Of A Child With Special Needs Is So Freaking Hard

by Britt LeBoeuf
Originally Published: 
A parent holding a hand of a child with special needs on the left side, and on the right side a chil...
Britt LeBoeuf

Being a parent is hard. Being a special needs parent is harder.

Comparing the two is like comparing apples to oranges. Or monster trucks to Mini Coopers. While they are both “in the same vein” they are really not that much alike when you step back and look at them.

While you worry about which kindergarten teacher your son will have, I have to worry about what kind of classroom my son will have to go in to best meet his needs and abilities.

While you get excited to get your daughter off the school bus every afternoon, I have to make sure there is an aide on the bus so my son doesn’t get bullied and knows when to get off.

While you are busy asking your kid how their day went, I am celebrating the fact that my son can finally tell me how his day went after 6 years of speech therapy.

While you are able to give both of your kids equal attention, my neurotypical child tends to get the short end of the stick because my other child needs more of our attention and has exhausted us.

While you get to make spur of the moment play dates to the local park, I have to have notice of that plan so I can prepare my son and me to go — snacks, talk to him about it before, and an excuse to leave if things don’t work out.

While you enjoy a date night with your husband while the neighborhood high schooler watches your kids, I can only rely on a few trusted caregivers to watch mine because not just anyone can deal with any behaviors that might come up while we are out.

While both of your children get to do typical kid stuff this summer (laugh, swim, go on vacation), I have to worry about if we’ll get to go further than an hour away or be able to swim in a pool without the added safety worries.

While you are attending town soccer practices and boy or girl scout meetings with your child, I am attending IEP meetings and sitting in on yet another evaluation that could change the course of my child’s life.

While you get to talk to other moms about the new local hair salon or place to eat dinner, I have to explain to the rest of the group why my son is walking the perimeter of the playground instead of playing on the climbing apparatus.

While you have to teach your child to be kind, compassionate and to stand up for others, I have to teach my child all of those things and also how to defend himself from bullies that 8 out of 10 times will target him over other kids because of his special needs.

While you get to casually shop at Target and talk to the sweet elderly woman that waves at your son in the cart, I have to explain to her that my son has autism and that he is having a meltdown because the store didn’t have his favorite snack I told him we were going to buy.

While you are out having dinner with your best friend, I will be at home again because my son had a rough day and I just need to be here instead and my needs always come dead last.

While you cry at night sometimes because your kid told you he hated you, I cry at night often because I worry about whether or not I’m doing enough to help my son live his best life.

While you are bragging about the new milestone that your child has hit, I have to explain why my son is almost two years behind in some areas of his development.

While you worry about how much you are going to spend on your daughter’s prom, I have to worry about if my child will ever get asked to go to his.

While you worry about your child getting a good job or going to a good college, I have to worry about if my child will ever be able to hold steady employment or live on his own.

I don’t say these things to make you feel sorry for me or my child. Nor to make it sound like you don’t have hard days as a mother. I am not trying to compare the two or play the “poor me” card. I’m trying to give you insight into what it is like for us special needs parents. We live with these things everyday.

Every. Day.

We will for the rest of our lives. Many of us will see amazing things out of our children in our lifetime, and a great deal of us will learn more compassion and appreciation for these special little people that we were gifted than any other parent on the planet.

But, that doesn’t mean it’s easy. It’s isolating, exhausting, amazing, and inspiring.

My son is my hero. I don’t say that lightly or as some kind of cheesy euphemism. He is my HERO! Nobody has fought as hard as he has to be where he is at, crushed expectations that were placed on him from the time he was born, or opened the hearts of so many people in just the six years he’s been on the planet.

He’s a miniature version of me with boy parts and a special thing called autism. He is doing second grade math and first grade reading while still in kindergarten. He is the best big brother and has brown eyes you can get lost in. He’s my sweetest love. My firstborn little fighter. I love him more than any part of myself and to the sun and back again.

I love him for who he is and for who he is going to be. But, it’s hard. And I’m done trying to explain that to people that will never “get it.”

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