In November 2010, while my husband was away during his 5th consecutive month of training, I sat down at his computer to participate in National Novel Writing Month (NaNoWriMo). I failed, completing only 34,000 of the required 50k to get my shiny gold star. During the month, I was chatting on the message boards and spoke of my daughter, who has autism and ADHD. I got a message from a fellow participant, and I couldn’t help write a response. Though I never sent it to her, there are some things that just make me so filled with emotions that I have to write it down or it will eat me alive. This was originally written October, 27, 2010:
This was part of a message I got from a woman also writing a novel in November and it just floored me:
[I’m one of those stay-at-home-but-needs-to work-so-I think-I’ll-write types. Two kids… girl 9, boy 7. Main reason for the message… they are both ADHD so I “get it”. 🙂 The boy goes to the CDC school in Irvine because meds were a disaster in him. The girl takes meds and seems “ok” for the most part.]
First I have a huge issue with the way she addresses her children. “The boy” “the girl”… They have names don’t they, or at least nicknames if its a privacy issue? Also, your child may have ADHD or ASD or any other issue, but they are NOT the issues they have. Nothing pisses me off more than hearing “Oh she’s ADHD” or “He’s Bipolar”… You wouldn’t say, someone “is cancer”. A disorder may be a part of a person, but it is NOT the end all to who that person truly is. (Note: This does not apply to the word “autistic” as this is an adjective used to describe a set of behaviors and/or characteristics.)
Whether you “get it” or not isn’t the point, most people just look at me like I’m a bad mother while my daughter is throwing a fit about how many bananas are on the bunch or because the floor cleaner in the store is hurting her ears while most of us either don’t hear it, or have completely tuned it out. She can’t sit still, she has trouble communicating effectively without relying on scripted phrases, and wont eat nearly everything she’s given because the texture hurts her tongue. It’s physically painful for her to get water in her ears or on her face. The look of terror on her face when it happens is enough to break a mother’s heart. She takes showers instead of baths because she can’t sit in the water. She doesn’t go swimming for the same reason. Though some days she’ll stand in the big pool, she still wont even sit in the kids wading pool. If things aren’t done the same way every time she can get confused and then can’t seem to function. I have to hug her so tight I feel like I’m gonna break a rib just so I can put her jacket on without zipping it up so high she can’t breathe. And I have a suspicion that hugging her so tightly is one way she knows I love her. She cries when the bus leaves after dropping the kids off at school. She cried when a character on TV walked on hot coals, she cried when I was 1 minute late picking her up from school (the one day they got out early). Every fit she throws, every scream, every fight we have just to put on our shoes or the 2 hours it takes to comb her hair because the panic is so intense she’s practically hyperventilating. It makes me feel like a bad mom when people stare at her, and you can see their judgment of me on their faces.
But I feel bad for them. She’s worth every fit, every tantrum, every tear. Most people see all of the above. They see the fits and the screams and the tantrums. They don’t ever stop to see the beauty behind her bright smile and the infinite wisdom in the depths of her blue eyes. She is so intelligent. While she’s too young to be in kindergarten, she knows most of the stuff they are teaching her in class already. She reads at a 1st-2nd grade level and loves to learn. Walking the two blocks to school may take us 30 minutes, but we know the special scent of every flower we pass along the way. We know how many lines are in the crosswalk and jump over each one. We pick up the newspaper and trash we find in yards and we throw it away because “we have to pick up the paper”. The impulse is too strong for her to resist. Her brain knows it doesn’t belong and she can’t function until it is picked up. She loves the world around her and while she doesn’t always know how to interact with it, she’s always VERY curious. She’s always willing to share a piece of herself with anyone willing to listen. Her loose tooth is the talk of the town and she will gladly wiggle it for anyone who looks at her while she’s talking about it. Behind the fits, she’s outgoing, loves her friends deeply, and is upset when they are hurt. She is caring to her friends and as considerate as she can understand to be. She has a best friend, Dylan. They met in class and you would think these girls were long lost sisters finally reunited. They greet each other with a big hug every morning and hold hands all day long. Dylan currently has a cast on her arm and when she drops something, K is the first person there to help her pick it up. She is a truly wonderful person and a great friend. She has her difficult moments, though her’s may be more difficult than yours, no doubt you have them too…
I love my daughter so much. I wouldn’t want her to be anyone else. She’s is who she is, and that is who I feel in love with. I love every tantrum, every panicked cry, every flower we smell, every breeze we hide from, every song we sing (most often when there is no music)…
In 10 minutes I will pick her up from school. I will ask her the same things I always do. She will answer the same way as yesterday and the day before and tomorrow and the day after.
“Did you have a good day at school today?”
“We had a great day at school today!”
“You had a great day? Wow! What did you do today?”
“I read some new things.”
She always reads new things.