A Really Hard Day
Today was a really hard day, with a smile for my tears. I sat at the table and cried. Not pretty raindrop tears but a total wash out that has left its mark. I keep trying to cover up the wiped away make up and distract from the red eyes with some eyeshadow before my class starts on Zoom, but it’s to no avail. I just cry some more about every 15 minutes, the amount of time that seems to pass before I think of it again.
Autism Spectrum
Oddly enough, I find comfort in reading the plain, straightforward descriptions online, only after they have overwhelmed me with more emotion, of course. I guess they comfort me because they make me feel less crazy. They tell me that parents of children on the autism spectrum are more stressed than other parents.
We don’t have a diagnose but we live all of these each day:
routines that might seem unusual or unnecessary
lines up toys or other objects
severe frustration and tantrums
acting without thinking
gives unrelated answers to questions
short attention span
repetitive motions
unusual mood or emotional reactions
lack of fear or more fear than expected
avoids eye-contact
refusing to be interrupted
aggression
movements that injure or can injure the person
sleep problems
trouble with social activities like talking or making friends
not afraid of dangerous things, fearful of harmless objects or events
laugh or cry at unusual times or show no emotional response at times you would expect one
What Did Me in
It wasn’t the depressing and concerning conference with her teacher that did me in today. It wasn’t the hour long battle that came before the conference with screaming and hitting and holding and falling out in the floor and crawling and crying. Surely I am used to those things by now as I have quite a bit of experience with them both, and I am good at crying when I am alone. It wasn’t the anticipation of the neurology appointment tomorrow, either. It wasn’t not being able to accomplish any of the work I needed to do. I expected that would be the case. What did me in was just a simple, every day thing.
Facial expressions and behavior may not match the situation; the child may smile while saying something sad
A Smile for my Tears
While I cried, she smiled. Almost laughed even. She knew why I was crying. She knew she was in trouble. She knew how disappointed I was, but it took a few minutes for it to register, and then she hugged me and said she was sorry. She knows that is the reaction she is supposed to have, but it is not her immediate, natural response. And when your beautiful 8 year old daughter gives you a smile for your tears, that is a tough day.
It can be disappointing when things don’t turn out the way we planned and hoped and sometimes we have to mourn those dissolved expectations in order to understand and celebrate what we do have. Years ago, some autism activists became very angry at a group who used to sit in cages to raise awareness of autism and while I understand their anger, I also understand those who sat in the cages. In the middle of her worst fits, it is like she is stuck in a cage and I can’t get her out. She is totally out of control, of both her emotions and her physical body. For her, there are no magic techniques that help get her out of those moments. Time is the remedy, and waiting for it to pass is overwhelming for all of us.
Everything, Even the Smile
Perhaps the worst thing about all of this is that it steals the idea of the future, not because there isn’t a wonderful one waiting, but because you can’t see beyond the present. There are incredibly talented adults with autism contributing amazing work in the world and I know that. Sometimes, though, I can’t see it because in front of me is just the smile for my tears, the constant struggles and failures at school, the behavior that doesn’t make sense from my view, and I have to remember that that isn’t all of who she is. It’s not all of who I am either, and so I love everything about her, even the smile that shows up at the seemingly wrong time.
“If you have only one smile in you, give it to the people you love.” ~Maya Angelou
“When there are clouds in the sky, you’ll get by if you smile through your fear and sorrow.” ~”Smile”, John Turner and Geoffrey Parsons
“When I saw you I fell in love and you smiled because you knew.” ~William Shakespeare
“I love those who can smile in trouble.” ~Leonardo da Vinci
First, I love you and you are such a good mama. Second, as her diagnosis comes and you fight for services and help. . . Things will get easier. Help and progress is possible and your little one will grow and progress and behavior management will become easier for her and for you guys as strategies are put in place. There is hope for you guys. As a side note, I do know that when my little friends would do this and smile or laugh during correction, upsets or aggression, my RBT would say that their minds aren’t even in the current situation and the emotion confusion is a really difficult thing and it has to be taught a lot of times.
Kaitlin,
I love you too and want to thank you for your words of encouragement!
I love you Hannah. You are a caring, strong, and amazing mother/teacher/friend/woman. I am proud to know you.
Thank you Rose! I love you too and miss you so much!