As someone affiliated with Autism I have noticed if I browse through Pinterest or Facebook or any of the dozen support groups I am part of there is often a common theme….having a special needs child changes your life. Or defines you as a parent. Or teaches you lessons and makes you a better person.
I’ll be honest. I don’t feel that way yet. I haven’t ever actually. Every day is more like an episode of Ground Hogs day. He typically wakes up before 5 am. My anxiety about him waking up kicks in around 4 am. He will crawl into my bed and immediately snuggle me. It’s nice. I love it. Until he starts rubbing his feet on me. He can’t stop moving. I typically last 15 minutes and we are up. He immediately wants milk…that needs a laxative it, a snack…which has to be in a bowl. He needs the Kindle immediately. He wants the TV on..hopefully there are no WiFi issues for Netflix. If there are he watches the DVR. Either choice takes 5 minutes of choosing a program non verbally. I shush him 47 times because his brother his sleeping. I then lay back down. He will come in my room every 20 minutes like clockwork to change his show or because the Kindle locked up. He needs more snack. He pooped. Peed through.
And so the day begins. The same way it did the day before.
Every day is the same.
Kindle, trains, videos, DVD’s, VCR’s, so much poop, fighting over food, being chased by diapers, repeat. I typically ask him to turn down the sound on the Kindle over 100 times. No lie. By 5 pm I am screaming it. I’m not saint. I am human. I have a breaking point.
And to make it worse…I will beat myself up emotionally because I don’t feel like I’m doing enough. Or making a big enough difference. Why don’t I feel special. Or like I am changing the world by raising this kid. Why hasn’t he changed my life yet.
My point is that the special moments are hard to come by. I often forget that Cooper is a real kid. Yes, you read that right. I am honest. With no communication and very little interaction I just forget. So when I received a note last week from one of Cooper’s therapists I literally dropped to a chair to read it. And then I read it again. And again. And sent it to Cooper’s dad. And then I ugly cried.
The kid she described was so different than the kid I knew. Maybe I forget that he is out in the world for 8 hours a day….interacting. He isn’t a robot. He is a kid. How did I not know that my kid is growing up? He is developing. Slowly. Ultra slowly. But still developing.
I give up every single day people. I start off strong. But by the end I am worn down and sad and exhausted. And with kindergarten starting I am sinking a little lower.
I think this note means more to me than anything so far in my sweet boys life. Cooper made a difference in someones life. He touched them. I am so proud of him.
Here is her note.
“Kate! Thank YOU! I was so humbled to receive the card and gift card from you. Hearing from you this morning made me realize, a few days in, that I have somehow MORE to say that didn’t make your card. Babbling is a real skill of mine.
There is so much I will miss about working with your Cooper. It’s hard to communicate my daily joys with him via take home note (I often do not have time to write them until we are out at big gym) but there is so much that I looked forward to when he walked into the room. So much of Cooper cannot be reduced to a form note, so I hope you don’t mind if I tell you a little bit about our days together that never made those notes.
We started nearly every day with him running across the room and literally jumping into my arms or lap for a hug. No matter what my morning was like or my mood, I was so changed by those hugs and his head curled up on my shoulder.
Every day for the last few weeks he asked me for a laminated Thomas picture by saying “choo choo!” and imitating someone pulling a train whistle. It was the absolute cutest. His ingenuity and problem solving when it comes to nonverbal communication always amazes me. He loves when I whisper the Elmo song in his ears so he can be tickled by my breath and when I blow on his hair. I taught him to use his iPad to request “I want to see” if he wants to look out the window with me at the light rail and trucks. He loves to identify everything driving by with the words on his iPad and loves when we count or talk about the colors of cars.
Cooper put his arm around another child during music group the other day. It is someone he frequently has a mutually aggressive relationship with so it was really amazing to see them sitting so kindly together.
Cooper loves to sing a number song and then indicates it is his turn when he wants me to switch from “1 little 2 little 3 little numbers” to “1 little 2 little 3 little Coopers.”
He loves to look at himself in the mirror and dance and he loves alphabet puzzles. I taught him that his name and my name start with C, and now whenever we come to that piece, he looks at me expectantly. He loves animals and labeling them with his iPad on hallway walks. He loves hearing what letters various things start with, like “w is for window” and “d is for door.” He knows the intonations that accompany facial expressions and thinks the gravelly angry “GRRRRR” voice is the funniest. If we could sing “baby bumblebee” forever, I think he’d be happy, but is very partial to Pete the Cat as well. Sometimes when it seems like he’s been in the bathroom for an awfully long time, I peek in and he’s standing at the door listening to music playing in the other room. He particularly loves “Make a Man Out of You” from Mulan.
When Cooper and I take hallway breaks, he loves to be rolled around in a barrel. He also likes to peek back through the window into the classroom before we go back, and finds my staff photo on the sheet outside the door and points at both it and me. I am continuously amazed by the extent of his understanding.
We used to build tents out of giant mats and he and I could sit in there peacefully for 20 mins. Same with sitting under a giant blanket. He was never content to be in there without me, always pointing at me with the clearest message that I was supposed to sit in the 800°, airless fort too.
I am so proud of Cooper. I am so proud of the few things my inexperienced self taught him. I am so proud of the battles we fought that felt sometimes like they would never end and of his inability to hold a grudge. It amazed me every day that he saw you walking down the hallway and ran to you. His level of love and compassion amaze me and move me.
It has been a strange few days realizing that my life at Fraser will consist of a lot of kids cycling through my life. It has been hard realizing that someone with a sentimental heart like mine will have a difficult time working in a career where I grow to love kids and then they move on. I ache to help them all, but mostly so, I ache to soothe parents like you that worry you are not doing enough. I know finding babysitters and helpers and nannies must be difficult, and that you have to feel isolated and limited. I hope if there is anything ever that I can do for you, you remember how much I love Cooper, and that the privilege has been mine this entire time.
I chose years ago to work with kids with autism, but for me it is a job, and one I can leave at the end of the day. I don’t know if I’m articulating well, but I know your day to day is so so hard and you are thanked so infrequently and that you can’t clock out at 4:30 every evening and take a nap. I know how much your life has changed because of Cooper and I just want you to know that you are inspiring.
I found your blog via FB and it’s made me equally laugh and come close to tears. I have never heard anyone talk as honestly as you do and I know you are a beacon of hope and faith for so many parents. So often, as a society, we don’t like to talk about the true emotion and challenge that comes with autism. It is so much easier to just post inspirational quotes.
Over the years I know so many more people will fall in love with your son. He is SO. DAMN. CUTE. And he is so sweet and inquisitive. He has so changed my life and I can never thank you all enough for that.
Sorry for throwing so many words at you twice in a row now! I’ve never been the best at getting to the point. My mom kindly calls it “diarrhea of the mouth.” Nothing like a mothers love!
Part of me wanted to write all of this down so I never forget the little joys he and I shared every day. All of my coworkers in room 8 referred to us as “best buds” and it is sad to see my little friend go. Thank you for being gracious and allowing me to stay in touch with you all! Your family is so special to me. Happy Labor Day! Hope Coop lets you have a drink or two and watches some Little Einsteins. “