Sometimes I get tired of saying my son has autism. It has taken so much from me and my family, and it can feel like it defines us too much. It pervades. It hovers. Sometimes it smothers. I do, think, however, especially around this time of year that there are things for which I’m grateful that I may otherwise have taken for granted.
My son is 13 years old. He doesn’t read. He rarely talks. He makes odd noises and has trouble controlling some of his body’s compulsions. And he is 100% awesome and untrade-able.
Sometimes I forget that.
When he does talk, it isn’t conversational. I would trade years of my life probably to have a conversation with my son. I pray that one day I will. Right now when he talks, it is often scripted or just quick commands/demands around his basic needs.
“Mommy, juice.”
“Mommy, eat.”
“Mommy, Cookie Monster.” (Yes, he still carries the blue stuffed one around. Don’t ask.)
But then he also gets “stuck” and repeats things.
“No school. No school. No school.”
“Noodles. Noodles. Noodles.”
“Bye Bye. Bye Bye. Bye Bye.” (for when he wants me to get off my butt and take him somewhere, which is often! LOL)
Last weekend, my husband and I led a getaway for married couples raising ASD kids that my foundation sponsors a few times a year. We were gone for two days, and when we got home, my son made sure we knew he didn’t want us to leave again anytime soon.
“Mommy. Daddy. Myles.”
“Mommy. Daddy. Myles.”
“Mommy. Daddy. Myles.”
ALL freaking week, he repeated that over and over and over and over. It may seem small in print for a few lines, but when it is said literally HUNDREDS of times a day, it becomes like a dripping faucet on your nerves.
At one point I snapped, “Would you just be quiet?!”
He doesn’t often look me right in the eye, but he did then and my heart withered. I recalled a dark, silent season. Myles lost speech around 18 months old. That was the last month I heard him say “Mommy” until he was five. I wasn’t sure that he ever would again, and when he said it out of the blue one day, I literally fell to my knees and wept holding him. It was awkward since he squirmed out of my arms, but I didn’t care! He called me Mommy, and I got at least that one word back!
This week, I found myself buried under a pile of applications from single parents raising children with autism. My foundation offers a holiday program for these parents, pairing them with community sponsors to ensure an awesome Christmas for their families. Seeing them providing for 3, 4, 5 children with so few resources, and managing autism alone, it humbled me. Their struggle was hidden in the details of their wish lists.
One mom requested adult diapers for her 18-year-old daughter who never potty trained.
One mom listed modest requests for the FOUR ASD children she is raising. None of whom are hers biologically.
One mom included notes from her 17-year-old son’s doctor to corroborate her requests. His multiple diagnoses: Autism, Cerebral palsy, severe seizure disorder. Non-verbal. Multiple hospitalizations. And the picture she included? A snapshot of her standing behind him in his wheelchair, the brightest, bravest smile on her face.
How dare I complain? I talk to myself when I sniff out self-pity or ingratitude.
“Who do you think you are? Have you forgotten the days when your child could not talk AT ALL? Do you see what these parents are managing ALONE?”
Don’t get me wrong. Pain is personal. Just because someone else hurts doesn’t mean you don’t, or that you feel your pain less deeply knowing someone else hurts more, but seeing circumstances harder than yours can provide perspective. And especially this time of year, I make sure to position myself around folks who remind me of how blessed I am, and compel me to bless someone else.
I picked Myles up from school that afternoon, after a day of those applications, and praying I would find the right sponsors for each family. Something had shifted inside of me. As soon as he got in the car, he started.
“Mommy. Daddy. Myles.”
“Mommy. Daddy. Myles.”
“Mommy. Daddy. Myles.”
If you can’t beat ‘em, join ‘em. Every time he said it, I’d say under my breath, “Thank you. Thank you. Thank you.”
It felt good. Maybe he’s on to something.
If you’re interested in information about the holiday program for single parents raising ASD children, click here.
You are beautiful! You are human! We all are. This story hit home. Thank you for sharing.
Jessica, I’m glad. Some days are rough…whew! It’s hard to remember what there is to be grateful for. Then gratitude itself feels like a gift! Thanks for sharing. 🙂
Wonderfully put and so well said. I had a snap moment myself yesterday. It’s good to have this reminder to try to prevent those moments. Thank you Kennedy.
Thanks, Piper! They don’t mean to wreck our nerves! LOL