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.
Thank you for your post. I have seven children, but didn’t know about SPD until my 7th, who definately is the most affected. We have made adjustments to help her, and I have found, more often than not, that they helped someone else in the family as well. School for #7 is a totally different thought, a scary one. I guess I was feeling a bit like “coasting” with my last child. We have a homeschool routine, curricula that works, I had a system, and then comes #7… As I am faced with starting her next year, I wonder just how much to change. I don’t want to re-invent the wheel, and it is wonderful to hear what works. I would love to hear more ideas from everyone.
PS, I carry mittens in my purse (In May), and I thought we were the only ones who used gun muffs!!
Ami, thank you so much for sharing, especially when you shared about your feelings of “screwing up your child”. I had a moment like that this week and it’s good to know that I’m not alone. Our son too, would have a difficult time in school and I am thankful that God has lead us to homeschool. It’s a blessing that he can learn in a way that works best for him and will discover what God has for him to do.
Two of my three have varying SPD symptoms….I’ve never had them actually diagnosed, mostly because we are military family and to go through all the hoops and referrals to have them evaluated would just be insade, I seed help when my oldest was 2 and the dr’s were ‘idiots’ for lack of better term. They were throwing around things like ODD and we met with a behavioral specialist and they looked at the ‘typical’ disorders and ruled her as still in the normal range….so nothing to help. Then friend brought up SPD and oh my gosh, it all made so much sense! what is even more cool, is realizing that I had suffered with a lot of it as well. I had to laugh about the chalk with gloves because it’s a fantastic idea…for myslef! LOL I can’t stand the feel of chalk on my hands, so I’ve just avoided it, for years!
My 8-year-old son was diagnosed with SPD just before he turned 4. I can LOL about things now, but it was rough for a while…until I knew what was going on and OT/LT. Mine’s a chewer too; so many shirts! Gum is a pocketbook STABLE…along with a little MP3 player and his favorite music (The Beatles) to block out sounds. And the chocolate? Yes! How he can SMELL it from rooms away I have no idea! And #10…I feel the same way! There were many things I did before knowing and more before understanding and even some now during frustrating moments where I wished I had made different choices…but I’m learning too!
I just have to say I needed this after a really tough week with my SPD child. Gum is amazing. Trying to figure out a way to deal with car rides right now. ::sigh::
She was diagnosed late, so we are struggling to find an OT that will work with her.