Raising two kids with Sensory Processing Disorder (SPD) means I spend a disproportionate amount of time either providing or avoiding sensory disruption for my little angels. Curlytop, six years old, is mostly sensory-avoidant, with minor nuances of sensory-seeking behaviors. Her sister, Snugglebug, five, is sensory-seeking a majority of the time, with trifles of sensory-avoidance thrown in for good measure.
Snugglebug is a toe-walker, relishing the extra stimulation on her toes. She’s forever climbing, spinning, or flipping herself over, and she’d have a beanbag or a blanket on top of her head all day long if it was practical. When it comes to clothes, however, she insists on going au naturale or—if forced to wear clothing for the comfort of the general public—opts for rustling crinolines, tutus or petticoats and fitted bodices to give her an extra boost of sound and snugness around her torso. I can’t keep her out of our family pool, either
She’s like Ester Williams and Shirley Temple, all rolled into one.
Curlytop, on the other hand, abhors water, prefers closed doors to provide clean lines throughout rooms, claps her hands over her ears and emits glass-shattering shrieks at the sound of applause, decries crinolines and petticoats as “too noisy,” and would rather have her head shaved than go down a slide.
That is, if her head could be touched without the requisite screams of pain.
The girls’ preferences aren’t always at odds, though. Both require a minimum of 30 minutes of back, arm and leg scratching before they’ll go down for bed (“Mama, scraaaaatch my back. Please. Please?”). Both prefer a plastic utensil to metal, as plastic is less likely to transfer heat or cold from foods. Both insist on soft, fuzzy blankets which can be stroked during cuddling.
It’s hard for people not familiar with SPD to understand the world feels, smells, sounds, tastes and looks different for my kiddos, and I’m insanely grateful to have found a hair stylist who is an SPD mom, herself. Curlytop and Snugglebug get rock star treatment, and their sensitivities are understood and respected.
Now, I just need to find schools, babysitters, restaurants, grocery stores, libraries, a church and parks geared toward sensory issues.
Would it also be too much to ask auto manufacturers to create a vehicle in which all seats are middle seats (much freaking out if someone has to touch a door), climate control that doesn’t involve fans (can’t have air blowing in the car), and a radio that won’t go above three (Mr. Wright is a big fan of Spinal Tap’s “eleven”)?
While I’m asking, when at public performances, could we go back to the cool jazz and poetry snapping of the Sixties, in place of applause?
Perhaps Mother Nature could be bothered to tone down the scent and vibrancy of spring flowers. Our yard is littered with them, and like bees—which buzz far too loudly for Curlytop, by the way—my little gardeners are drawn to them, and can’t resist plucking the blooms, rolling them over their skin and clothing, perfuming themselves like ancient Egyptians. That’s a lot of pollen making its way into the home of a mama with severe allergies.
And seriously, Disneyland, is it really necessary to saturate the entire park with vivid colors, smells, and music blasting everywhere? We’d like to visit again, but after our last Small World ride experience, I think security has our photos on posters at the entry gate.
Do you have a child with SPD? What tricks and tips do you utilize to make the world more comfortable for your child? Learn more about SPD at http://www.sinetwork.org” http://www.sinetwork.org.
My daughter is armed with a pair of ear muffs to wear when the world gets too loud. She also has lots of soft, furry, cuddly blankets, pillows and toys to cuddle and stroke when she needs comfort and down time.
Delta, earmuffs are a brilliant solution for Snugglebug. Curlytop, on the other hand… Nothing touches her head. EVER. And, yes… furry/fuzzy blankets are our best friends. Amen. Amen.
Sweet, sweet hugs to your daughter!
Yep ear muffs and a big blanket to make the stroller dark are our friends. My lo (3.5) just doesn’t do sounds, people (she loves people just doesn’t like the sound that goes with them) and a lot of visual input. We will probably never go to Disney. We’ve found one grocery store (Wegmans) that for some reason she loves so we drive 35 min. to get there. Having one sensory normal child I feel bad for him because so many trips and things are cut short because she just can’t handle all the input. We have found that a DVD player in car with headphones seems to cut down on the break downs after 30 min. in the car. That’s been really helpful!
Renee, I am sooooo glad to know I’m not the only mom out there who uses the mobile DVD player for sensory soothing! Guilt trip cancelled!
It truly is difficult when other children’s activities are cut short or avoided due to the potential or reality of over-stimulation. I’m still trying to find that “fair” medium. Fortunately for us, the age difference between our SPD kids and our other, sensory-normal kids is great enough that the older kids usually understand.
It sounds like you’re playing the same balancing game with your kiddos, and I just admire the stuffin’ out of you! Thank you for your tips!
Thank you for a fabulous article. While DD and ODS have other dx, they sound very similar, nice to know others have the same issues.
Yes, Purple Vixen, we have “other” issues mixed in with the SPD. Depending on which part of our adoption file one wishes to believe, the girls may or may not have been prenatally meth-exposed. Curlytop has significant Developmental Delay and - even though we’ve had her since she was 7mos old - trauma associated with her care before our placement. She also has a history of absence seizures. (Though, interestingly, she hardly has them at all anymore now that we’ve found the Red Dye connection and eliminated it from her diet.)
We got Snugglebug (they’re full-bio siblings) immediately after the shelter care hearing following her birth. She doesn’t present with the same level of DD as her sister, and her attachment issues are fewer.
I should make clear that we have a fairly “open” adoption, and I have nothing but love and respect for our birth parents, and I owe them my deepest gratitude for blessing me with my beautiful angels!
But, no… you’re not alone. The link to the SPD Foundation at the end of my piece doesn’t seem to be working properly, but if you copy/paste http://www.sinetwork.org/, there are some fabulous resources and education there!
Blessings to you and your sweet kiddos. xo
my LO decided to start life over-sensitive/avoidance and transitioned to sensory seeking with a bit of avoidance left over. I’d love to understand how that works out! We’re still early in the process but for us, (she’s 21 mo) i have her car a small camelbak with water for deep pressure work or make the whole parking lot trek before we go into a place that she just can’t run twirling everywhere.
nap and bedtime work so much better if she gets a good period of rocking in the chair and then squeezes or heavy work.
It’s interesting that you report that, Katie, because our girls both have sensory stimuli that they’ve flip-flopped on as they get older. Some areas they used to avoid, they now seek, and some areas they used to seek, they now avoid. Teeth brushing, for example… They both used to resist brushing, but now I can’t get them to leave their toothbrushes alone throughout the day. (I know - not a bad problem to have, right? Kids obsessed with dental hygiene? In the grand scheme of things, I’ll take it!)
I wonder what makes that sensory change happen? I’m still learning more about SPD every day, but I’m glad to hear my kids aren’t the only ones who’ve flip-flopped.
Hugs to you and your daughter!
WOW! I have never heard of SPD but after reading your post I think my twins may have a mild degree of it!
My eyes have been opened to something I’ve never heard of, nor stood a chance about understanding. Thank you SO much for this post!
Hillary
Hillary, the Huffington Post just put out an article on SPD yesterday (How’s that for timing on my own piece? Scooped by the HuffPo!), and reports that perhaps ONE IN SIX children may have some form of SPD. That’s even higher than I imagined, but… two of my seven kids have it, so I guess the numbers work.
Here’s a link to the article, which may be helpful for you and others:
http://www.huffingtonpost.com/2012/05/10/children-sensory-issues_n_1506341.html
I hope you find answers for your twins. Just know that you are SOOOOOO not alone! The more we talk about it and “normalize” it, the better we become at raising awareness and finding answers and strategies to make the world more comfortable for our kiddos. <3
Omri (Snugglebug and Curlytop’s brother) was diagnosed sensory-seeker and was prescribed the weighted vest and river rock weighted blanket, which helped calm him down tremendously and helped with the screaming (vocal abuse), but it created another problem called “Delayed Pressure Urticaria” which resulted in head to toe hives from the pressure!
One thing that did work for Omri (on a day when he was what we call “gone”: meaning well past the point of no return in a melt down)- was heating a towel in the dryer then wrapping him in it and holding him. No pressure touch, no hives!
A favorite movie line from Toy Story in our home is “hyperactive hyper drive”, but the problem is Omri eventually does crash!
Patricia, I was hoping to see you here! That’s a brilliant suggestion with the warm towels. We do that, too!
(For those that are following along, Omri is my girls’ brother, and Patricia is his adoptive mom. Or, as I like to say, “MOM.” The relationship between Omri’s mom and myself has been INVALUABLE in staying on top of and discovering medical and developmental issues for the kids, and I am so completely blessed to have that connection with her!)
Dear Christina, thanks so much for your great post! My 6 year old middle son is a sensory seeker (as well as ADHD and PDD-NOS.) He has to run, jump, crash, and spin. He ran a 5K last week in 45 minutes! He’s been known to slide headfirst, laying on his tummy on a jacket, with the hood over his face- for the thrill. He constantly has small objects in his mouth, to the point where his teeth are wearing. And, one memorable time he chose to put a dirty sponge in his mouth instead of the cookie sitting next to it.
Here are some things that work for us:
Wearing hoodies for extra sensory input around the ears and face
Electric “buzzy” toothbrushes
Long family hikes
Sweatpants (“softies”) instead of jeans
Rubber “chewie” toys, although he would rather chew on a lego
Gum!
All clear brand laundry detergent
A swing in the front yard and a trampoline in the living room
Water play- in the tub, in the back yard, at the creek, in the swimming pool
Weighted blanket made with a furry fabric he chose (“Elmo fur”)
Lots of extra physical activity, but no organized sports
Occupational therapy, private and at school
Gluten, dairy, and soy-free diet
Stimulant (ADHD) and anti-anxiety medications
These books helped a lot:
“The Out of Sync Child Has Fun” by Carol Kranowitz
“What’s Eating Your Child” by Kelly Dorfman
I’m glad I haven’t had to deal with any auditory sensitivities, we seem to have skipped that one.
Have you tried the Wilbarger brushing technique instead of back scratches? My child liked it but we eventually stopped because it takes a great deal of time and didn’t produce any behavioral change.
Also remember that if your child has an IEP you can request an occupational therapy evaluation and see if she qualifies for OT services through the school district. Check with your medical insurance provider, too- ours has just approved OT for my son, after we’ve been paying privately for a year, woohoo! But of course they want us to switch therapists… sigh.