It’s easy to get wrapped up in the role of special needs parent. And it’s also easy to wonder if you spend too much time in your role. Others wonder that aloud for you when you’re really lucky. Today has been a prime example of a day when I’m left laughing at the insane amount of time I’ve spent being my kid’s mother. Insane. Here’s a brief summary of the day thus far (it’s only 1:00pm). Please note, I ADORE my child and thank Jesus for his existence. The account below stems from pure love and also being a human.
6:40 – Dude starts his morning checklist with a reminder from Dad to start on #1, get dressed.
6:55 – Dude is given a 3rd reminder to work on his checklist. Because #1 has yet to be accomplished. But lots of singing has indeed be completed. And many Pokemons have been captured in his brain. His 10 minutes of screen time for that portion of the morning has been ejected from existence.
7:15- 8:20 See above, but insert different tasks surrounding getting out the door. And 156 asks to play with the chickens. All denied. He earns 10 minutes of screen time.
8:20 – I get into the red car, open the garage door and Dude proceeds to enter the garage and hop into the front seat of the gray van. He’s literally looking at me in the car next to him before realizing that perhaps he’s chosen the wrong car.
8:22 – While driving I ask my soon to be graduating son, “You have 2 weeks left at school and you won’t be going there any more. How is your heart and your brain feeling about that?” His response, “Well, good! After all, the chicks will be 6 weeks old then.” Mmmm. Not quite what I was looking for. We work hard on coming back to the initial question to formulate thoughts that are on topic. Because his ability to process graduating from a school he’s been attending for six years is significantly important.
8:25 – Walking into school, he tells me about a classmate who has been “inappropriately teleporting him to the Arctic Circle” during lunch recess and how mad it makes him. And he’s sure he’s doing it because of his ticks. We have to then pause for a hot second before walking further so I can swiftly deal with this over-exaggeration of this classmate’s prejudice over his Tourettes and inform him that teleportation is NOT something that is worthy of his hard feelings toward this child.
8:27 – As we are escorted through the crosswalk by our principal, God bless Mrs. J, Dude puts his head down and sadly mumbles to her that he has a VERY important problem he needs to meet with her about in her office. I nip this meeting in the bud, knowing it’s centering around the aforementioned teleportation struggle. As I do this, I realize my son has chosen pants with a hole the size of his head and his sweatshirt is caked in snot. Fantastic.
8:29 – As I give him a firm hug and pray patience over all the souls, he starts asking his classmates if they too would like a “free hug” from his beautiful mom. I bee line to my car, reassuring Principal J that NO meeting is necessary. We laugh. We always do.
9:30 – Tim and I walk into Dude’s new middle school for a 1.5 hour transition meeting with members from his current school team, members from his new team and our personal Autism Buddha therapist. Because she’s my therapy wife and I taker her everywhere. Literally. She has come to church with us. And the rec center. This meeting goes over our son’s strengths and struggles and quirks and I use all the stories from the morning as examples of what to expect. They all smile and even laugh and respond with, “Welcome to our caseloads and 50% of this school’s population.”
11:00am – I exit with my therapy wife and smile at the magical words these new people spoke. They will be our people moving forward and they smiled at my stories and understood what makes Dude tick. They already have strategies and ideas and methods that will likely prove successful for him. And that’s the very best I could have hoped for in our first sit down rodeo. It definitely also helped that as I entered the building, two student were holding palms, trying their darndest to teleport each other to another realm. And 3 kiddos in my quick glances were wearing weighted vests. Home.
11:2-am -What did I do next? I ate lunch friends. A delicious gyro sandwich. And now I’m typing this blog post, which revolves around the subject in question.
This is what we do. Special needs parents don’t go with the flow and follow the rhythms of an expected day to day. Our conversations sound foreign in all sorts of difficult and amusing ways. Our cars take us places typical families don’t go. Our patience enters and exits zones of regulation most people don’t regularly access. We often stare at our spouses or loved ones, offer up breath prayers, and carry on with our days. Because why all the words most of the time? We make phone calls and receive phone calls that monopolize chunks of our days and even bigger chunks of our emotional capacity. And through it all, we wonder if we’re spending too much time on our children. But even when the answer is, “yes,” we can’t seem to find consistent ways around it. They fill us. And our cups overflow.