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.
I really LOVED your top 10. My son I believe suffers from SPD but on the other end of the spectrum. I really want to start home schooling him but don't know where to start, what do I do. I equally feel terrible for some of my behavior/parenting… had I known. I was frustrated with his lack of many things and chalked it up to laziness, all the while secretly knowing something was a little off. It is getting worse as he gets older and falls farther and farther behind in school. The poor child is a social outcast and all he wants is friends but they all treat him like he is diseased with the exception of a few. His self-esteem is plummeting to a new all time low. No interest in school or passing, just wants to play basket ball. Worst of all he will be shipped off to our junior high next school year which starts at 6th grade and he is nowhere near ready. I am worried. I am a struggling mom seeking advice and HELP. Where do I start??
I loved your post. I can't believe that I'm actually picking up homeschooling. I never ever thought I'd be the type of mom could do such a thing. My four and a half-year-old is really having a hard time in her private pre-Kay and we just do not see how she can adjust in a normal school setting. I'm trying to figure out how to do the OT thing and our insurance only covers issues that are autism related or some other condition which she does not have. It's just sensory issues. I would love to talk to you if it all possible I'm not sure if you get my email address even though I signed up to comment. I don't know how this works. I don't know if I'm allowed include my phone number but anybody on this board if you can call I'd be so appreciative. My daughter definitely has sensory issues as per the neurologist another specialist and I don't know what to do for her. I'm very scared and in the early process. Thank you so much any help would be really really appreciated best Mary
Hi Mary!
My best advice is to have your daughter assessed by an OT upon referral by her primary care doctor under the ICD-9 code 781.3 (lack of coordination). Check and see if your insurance company pays for OT under that code, and then make sure to get a 12 or more visit authorization for OT. Also, read "The Mislabeled Child" for the chapter on SPD.
Good luck!
This is awesome! My SPD child is 4yr. My whole family (women being the most extreme) are all a bit sensitive. Dirt on the floor makes me batty, bright lights hurt and perfumes … Massive instant headache. Seriously.. When I go to the mall I go to the opposite side and hold my breath to pass a Bath and Body Works.
My son is the most extreme, at 4 he can finally walk some barefoot outside (about 5'). Lights don't seem to bother him much now, but they did in the NICU (he was 3mo early) you could watch his numbers improve just by covering his eyes. He chews constantly, we just got him a Chewie a few days ago (and love it already! He is getting used to the feel of the strap, so he still takes it off, but it is getting less and less.
He HATES cold. He has just gotten where he will eat a tiny bit of ice cream or a Popsicle. I haven't noticed him with scents but that is probably due to my own sensitivity, I avoid it so he isn't exposed either.
He also head butts (got any remedies?) everything. Usually the floor or a wall/door. I have tried getting him to head but the couch or chair but that just makes him madder.
We did end up teaching him "5 breaths" because of his inhaler. We hold down his hands and make him to deep berths to calm him when he is headbuttingly angry. Sometimes it takes multiple tries but it usually works.
Hi, I really enjoyed your blog. I have four children. 2 boys and 2 twin girls. Ages 7,3, and 2,2. I have a son who has sensory issues. So far they are proprioceptive, tactile, and expresive and receptive language disorder. We are a one income family and I homeschool my oldest. We can not afford to send our son to THE MAGICAL SPD school where everythings bright and dandy. I believe that my son will benefit the most at home some days, other days Im so challenged and discouraged that I feel i cant give him what he needs. Alls we have is the local public school preschool child find. And to me I feel with his anxiety and the fact he loves home, will he really excel there.I have the desire and the compassion to homeschool him here right at home. Im scared out of my mind that Im not gonna succeed. But when he has a melt down or freaks out when his toys are out of order or needs a hug, whos gonna hug him like I can. Whos gonna have the compassion of patients I have. They can have every degree known to man kind and have worked with every disability known. But there not his mother. I know when he needs a hug and deep pressure to his joints, He always seeks me for love. His home is his known place. He knows where to go and what to do to calm his nerves. And for the love of me social interaction isnt just found in school , he has 3 siblings who love him to death who are home as much as him. He goes to playgrounds, church classes, therapy. When do compassionate mothers with kids like ours get the least courage and become the least knowledgable of our children. I get so discouraged with the every day sayings such as PUT HIM IN SCHOOL, HE NEEDS SOCIALIZATION, When did we have to give our kids to people we dont know to raise them for us? Wish there was more out there for mothers who are fighters to do raise and teach their kids with the help of God. We need more rescources instead of discouragement. God bless you for being such a powerful and strong mother.