I've never blogged about this before, so I asked my sweet son who has sensory processing disorder if I could share a bit about what I've learned. He asked that I not use his name. I'm going to respect that.
I cried through parts of this post. I wish I would've known these things at the beginning of my parenting adventure, but I didn't. Now I do. If you have questions about SPD, please drop me a comment. Also, one book that was extremely helpful to me at the beginning of this journey was The Out-of-Sync Child.
1. Bubblegum is a friend.
He chews. I mean chews and chews. Fingernails. LEGO. Holes in his clothes. It doesn't matter how many times you ask him to please not destroy his new shirt, he instinctively needs to chew. So, we stock up on gum. Anytime he asks, it's a yes. It calms. It helps provide the proprioceptive input he is looking for.
2. Sitting in a chair is optional.
Just because students at school sit in desks to do schoolwork, it doesn't mean my child needs to sit to do schoolwork. Handwriting was much more easily completed while standing. And hanging upside down on the loveseat while reading? Completely normal.
3. Nail polish remover, as part of science experiment, is a horrible idea.
One day we were going to do this super cool chromatography activity to observe the pigments present in a leaf. I was all woo-hoo-excited and whipped the lid off the nail polish remover; he ran out the front door screaming, "Why would you do that to me!?" Oops.
4. Gloves and chalk go hand in hand.
Another day we were going to do a fun art project. My son stomped and screamed about the chalk pastels. He just couldn't touch them twice. Together, we finally figured out that he could wear gloves and do chalk.
If you ever see a boy out playing with summer sidewalk chalk while wearing winter gloves, that just might be my guy.
5. Trying to savor a piece of dark chocolate in secret . . . well, it's impossible.
His sense of smell runs long distance, and he can hear a wrapper three rooms away.If by some chance he doesn't notice these two things, he will sniff out the chocolate smell left on your fingers or breath. The moral of the story: I share my chocolate.
6. Gun muffs are all the rage.
He vacuums every day. He wears gun muffs while he vacuums. It's just what he does. I'm sure he'll graduate to earplugs at some point, but he will probably need a sound barrier to protect him from loud noises for the rest of his life.
7. School would possibly ruin him.
Yes, there are amazing teachers in this world. Yes, they would help my child. Would they allow gloves and gun muffs and gum? Would they let him stand at his desk? If they did allow the things he needs, what would the other children say about him? How much teasing could he endure? What kind of anxiety would be produced due to the pressure of fitting in? Would he be in a special needs classroom?
I believe God gave this child an extra measure of grace when He prompted us to homeschool. I have not been perfect {see #10}, but this child has always been unconditionally loved right here. He has had a chance to grow and change and work through some quirks without an audience.
8. An amazing gift lives within this child. Don't miss it.
Even though there have been difficult moments, this child is amazing. A few summers ago we were picking blueberries. After picking and picking and picking, my bucket was full. One son had a bucket almost full. The other son had only two cups of blueberries in his bucket. I was so frustrated. How could he possibly have so few berries?" I stood back for a minute and watched him pick. He inspected every berry thoroughly, examining them for critter bites or specks of pink. I grabbed his bucket and ran my fingers through his {perfect} berries. I get it. I got it. "Son, your small stash of blueberries are beautiful and perfect. God has a very special job for you. {It's just not going to be professional blueberry picker!}
9. My pride is not more important than my relationship with my child.
You can't really imagine the not-so-good advice I've been given over the years in dealing with this child. From strict church goers to well-meaning family members to strangers at the grocery store. They all know exactly how they'd fix him.
I stopped trying to "fix" him years ago. And sometimes he embarrasses me on field trips or while we are out and about. He's not trying to be rude. He's not trying to be obstinate or disobedient. He is just trying to live in a body that experiences the world differently than you or I.
I want him to know that he has someone in his corner, fighting for him, no matter what, even if he does have to wash his hands 73 times during pottery class.
10. I've screwed up. A lot. But my son has forgiven.
This boy was a screamer when he was a babe. He would cry in the sunlight. Cry if his feet touched grass. Cry if a loud noise startled him. He cried. I cried. We cried.
This toddler was frustrated a lot. One day at the public library, he stood on a super small step stool and screamed as if he were 50 feet in the air. I wondered what in the world is he so upset about? I didn't know that he didn't know where he was in relation to the space around him.
My friend was observing the 2.5 year-old version on my son one day on a slide. I told him, "If you go up there, I am NOT coming to rescue you. You are on your own." My friend watched him climb up. Get stuck. And scream. I was exhausted. I know motherhood is exhausting, but I didn't know about SPD until my observing friend said, "Ami, he has some serious sensory issues."
I started researching. I thought about everything I had experienced in his little life. I panicked. Surely I had screwed up this child forever with my maddening anti-SPD friendly parenting skills. No compassion. No understanding. No empathy.
I learned as much as I could. I went to a conference with Carol Kranowitz, author of The Out-of-Sync Child. I had him evaluated. I started using sensory play and providing lots of sensory experiences for him.
If I could just experience for one hour what it's like to live in my son's body, with all the heightened sensory input, maybe I would be a little bit nicer. But I can't. So I consistently pray for God to give me more compassion for this child.
Amy B says
You did a lovely job of explaining SPD. I cried all the way through the book Raising A Sensory Smart Child because I finally found something that explained my daughter. I pray for compassion too!
Kathy says
Thank you.
Christy says
Thanks so much for sharing this! I have been struggling with a daugther that has similar sensory disorder issues including the intense chewing. It's frustrating on a level that most people don't really understand. It helps so much to find a post from someone who is right there too. Every little bit of information and support helps!
Alycia says
Thank you so much for this post. My husband and I laughed when we read #5…that is so our son. He is almost 6 and starting kindergarten tomorrow. We got a very unofficial diagnosis of SPD from an OT friend and a Speech Pathologist just 3 weeks ago. We live in Nigeria so no OT's for us to see here so we are trying to put together a sensory diet of sorts to do with him. We've met with his teacher to work out a potty schedule as he still isn't potty trained. Anyhow, I've been reading online about other people's experiences and it has been so helpful. For years I wondered if he had ADD but the sypmtoms just didn't all fit. When I read about SPD I so often see my son. So again, thank you so much!!
Elizabeth says
Oh Ami,
Thank you for this!!! A friend forwarded this to me. My children are 2 and 1. Both have SPD. So do I. Your sharing made me cry!!! Not a bad cry but an I feel your heart cry!!! I live this daily in 1 way shape or form with my sweet loves ory own body. I want to HS but so many ppl say I shouldn't. You encouraged my heart. That it is possible. You said exactly what I have said. With SPD I can work better with their needs, struggles during school time. I would love to chat more with you!!!! I don't have any friends that get this life of a mommy to SPD children. I know that I. Am. Exhausted. Feeling all to well too!! Please email me if you have time!!!
Blessings and thank you so much for sharing!!!!