As parents we all understand that parenting is a very unique experience for each person. We all also deal with other people who either don’t understand our experience or shame us for differences in parenting techniques. As a special needs parent this misunderstanding has whole new circumstances.
I want to explain a little about our experiences and how it affects our day to day lives.
Our oldest daughter is four years old and autistic. She was diagnosed less than a year ago but even before that we understood she was not just like any other child. At least that’s how I put it. At the time I did not have the experience and education enough about Autism to say she was not neurotypical.
This is not just about Autism though.
Our son is turning three tomorrow, he is speech delayed, he does not have a diagnosis, but I do not believe he is neurotypical either. Our day to day life is like any other, for the most part, we play, I work. To many, they may seem like any other child.
However, my husband and I have learned to really listen to their wants and needs that by three and four is not typical for other children. They are both just learning to express themselves in ways that can be understood. That is asking for drinks or snacks without just screaming or throwing a tantrum. That is understanding that when she makes this sound my daughter wants water, yet another means snack, and another something entirely different.
Our daughter is a sensory seeker.
She is constantly on the go, she loves to climb, she loves to hang upside down on things, and she loves to be outside. She also has a very high pain tolerance and little to no safety awareness. This means if she falls, she may act perfectly fine, but I have to keep an eye that she may be hurt more than she’s showing. She’s impulsive. She may decide in a split second to run from the house, run from me on a walk, go into the street, or get lost quickly. Our son is just as impulsive. Then if they get lost, neither can tell an adult their names, their parents’ names, or where they live.
So, what do I truly want you to understand about special needs parenting?
I am constantly living in a state of worry. I constantly have to think two steps ahead of every outing, of every family event, and of every trip.
There are some things that are just out of the question because we cannot guarantee they’ll run off when we least expect it. There are other trips we’ve taken where I had to fight my first instinct. For instance, before having children I always swore I’d never have a child on a leash. Since having an impulsive, sensory seeking, autistic daughter, we went to the Oregon coast. She was on a leash and I was very tightly holding her hand the whole time we walked along the beach. She wanted to jump in the water, she kept pulling me to get to the water, and she does not know that she’d be swept away so quickly.
Going out and having a babysitter is not easy.
Having someone you trust with your child is not easy no matter your situation in parenting. But it is easy for my non-verbal children to be hurt, abused, or mistreated and not be able to tell anyone.
I write this in a hope for more to understand our situation and the situation many parents with children with special needs go through. I do not write this for sympathy. One tip…. Never tell the parent of a special needs child that you’re sorry. There’s nothing to be sorry for. I love my children with all my heart. They’re amazing, unique, beautiful, and exactly how who they were meant to be.
I will stand by them every day. Keeping them safe and helping them grow.
Sarah
10 Ways to be an Advocate for Your Special Needs Child
I Am Not An Autism Mom, I Am A Mother of An Autistic Daughter
Understanding Autism and Stimming
