Parenting Children with Special Needs: the Gift of Stevie and Will
It seems that autism is on the rise and we are part of that wave. Both our boys, Stevie and Will are on the autism spectrum, but because of how well they are doing, we have been told time and again that we need to share our story. What does it take to raise an autistic child, and ANY child for that matter? Openness, humility, working on oneself so as to avoid projecting your fears and issues on the child, space to allow them to be themselves, space for yourself, space for your spouse and a village.
So here is a VERY short assessment of our experience: It all boils down to our perception of our boys and the reality we have created for our family.
Imagine for a moment that you have something “wrong” with you and everywhere you go, your “wrongness” is being highlighted because of the social discomfort of your parents. “I’m so sorry! They have autism and that’s why they are acting they way they are acting”. Until one day it hit me: how painful and self-esteem shattering it must be to always be excused for being who you are. I must admit this was not an easy pill to swallow because I don’t ever want to be the one hurting my children. But because of this realization and knowing that children always pick up on their parents’ emotions, I made it a point to change this belief in me.
During my grieving process, my husband said something to me that I always share with parents that have just found out their child has autism (or any disability, for that matter):
“Imagine if they had been born in another family that didn’t care, didn’t have the resources, or the drive to do the absolute best to help them. How much harder would life be for them?”
I know it’s cliché, but I feel very blessed (or lucky or whatever you’d like to insert here) that the boys came through us. In my experience, there is nothing like having children to catalyze growth in a human being. And if you can see your children as your teachers, that growth is exponential.
In releasing the need to do it all by ourselves and the pride that comes along with that, you realize that to raise children (of any kind) it takes a village. You do research, you ask for help and allow for help to come in any shape or form. You accept the help and you feel real deep gratitude for what you have, what you give and what you receive. You really learn to give and to receive. There is no time for false modesty. The people that have helped us raise our boys and helped us in this process are what make this a beautiful life. They have been there every step of the way, not only teaching our boys, but teaching us. This has taught us real humility.
When someone tells you your child will not be “normal” and his life will not be what you expected it to be, you need time to process. You need to give yourself permission to cry, to be angry, to grieve. Then, you need to pick up the pieces and start anew. One of the amazing lessons that our boys have given us is that by exploding the paradigm of “normal”, we can now create our lives in an exceptional way. In a culture of achieving, “beingness” takes a back seat. The boys remind us why we are here in the first place: to be ourselves and shine brightly. This is how others give themselves permission to be their true selves and shine.
One of my proudest moments on this was the response to one of the questions all the kids get asked in Kindergarten, “What do you want to be when you grow up?” Stevie’s answer was the best: “Awesome!”
With the boys' autism and young age it can be hard for them to communicate. Stevie does NOT like to be wrong, so when we were at the school nurse for his regular eye check up, he wriggled a lot and tried to get away from having to do the exercise of telling us what he could see from the chart for his right eye, so the nurse suggested we go to a pediatric ophthalmologist. We found a great one that does well with autistic kids and found out poor Stevie was pretty blind on the right eye and he would need to be patched 2 hours a day and wear glasses so his eye could self correct before it was too late.
Stevie is super active and I really needed to find a way that would be comfortable for him (and me!) to try on glasses and the try at home kit is GENIUS! He tried them all and we all agreed that we loved that the ones he liked.
What’s been funny is how much people love the little guy in glasses! He’s adorable all on his own and has personality for days (he says ‘hi’ to everyone that passes by and loves to hug), but the glasses were the cherry on top! Plus, he can see!!!! Poor kid said to me the first day he had them on, “Mama, I can see the airplane!” I am so deeply grateful for all the help JPE has been to us!
--Nicole, mama to Stevie & Will