The Itchy Sweater: Sensory Processing Disorder

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You know those really itchy sweaters you had when you were a kid? You always seemed to have at least one. You hated it, but maybe you loved it, too because it was your favorite color but then when you put it on, you realized it itched SO much. You didn’t wear it often, maybe only for picture day or because your mom made you. Sure, she gave you an undershirt, or if you were lucky, a turtleneck, to wear underneath so it wouldn’t itch so bad. But if it touched your wrists, or the undershirt rode up a bit and the sweater touched your belly, you were tugging away at it, trying to stop the itchy sweater from having contact with your skin.

That is how my 6 year old daughter feels. But it’s not about a sweater. It’s about all clothing. Every sock, shoe, pair of underwear, and every seam inside of every piece of clothing she owns feels like that itchy sweater, only worse. It is more than uncomfortable, it is painful. She has Sensory Processing Disorder.

It wasn’t always this way. She had sensitivities, yes. Preferences, sure. She didn’t like jeans or empire waists or anything that felt tight around her middle. Those things were easy to work around, we simply didn’t buy them. She had a wardrobe full of leggings and skirts and cute tops.

But then, early this fall, something happened. I don’t know what triggered it, but suddenly she could not stand her clothing. Getting dressed became a nightmare for her. It took a very long time. We had to remove a lot more items from her wardrobe: any shirts that had something sewn onto the front of them (the stitches on the inside of the shirt touching her chest or tummy were unbearable), tights of any kind, sleeves with elastic.  We learned which clothing company made interlocking seams and seamless socks and really, what is wrong with wearing pajamas out in public when you are only six years old? We do that a lot now.

It has been painful to watch our beautiful, happy, creative, joyful daughter locked in this intense struggle. But one thing became very clear. We needed to get help so that we could help her.

Each day it is a process to help her get dressed and get used to a new, clean set of clothes. Dressing is very difficult and uncomfortable but with the changes to her wardrobe, on a good day, her body adjusts within a few minutes. The next challenge will be when she has to change positions to sit in her car seat or in her chair at the dining room table or lay down on her bed at night and she becomes aware yet again of  the feeling of the clothes on her body, and the extreme discomfort starts all over again.

I knew what this was.  My older son had struggled with a less intense bout of  clothing sensitivities related to SPD when he was an infant and a toddler, pulling off his own socks and those of everyone else, because, he figured, why would anyone wear these torture devices?  But SPD for him was very different than how it presents with my daughter.  Although they are both sensory seekers, they use different methods to increase the input into their nervous systems.  My son would seek out stimulation by crashing into things and people constantly, banging toys onto any hard surface to the point of damage, and sometimes banging his own head. He doesn’t do these things anymore. He is still a sensory kid, but he’s learned a lot about how to help himself and when he meets new sensory challenges, we work on that.

So, I knew what to do.  Sort of. Out came the books I had read a few years before, the internet searches for information and resources, the long talks with friends whose kids struggled with similar issues.

We also began to modify my daughter’s diet. And the search began for an Occupational Therapist covered by our insurance plan, who could assess and treat her and help my husband and I to understand how we could better help her at home.  We are getting help for this but it is a process. We go to the Occupational Therapist every week and we have begun to embark on an intense “sensory diet”, a plan of exercises that we do at home each day.

I am given another reason to be grateful that we homeschool. It has allowed us to easily modify our schedule to go to OT appointments and to do exercises at home. We can slow down our academic learning. There’s plenty of time for that. We need to do this right now.

And in the meantime, she wears pajamas a lot, and often, her summer sandals, even in December, because she would rather endure freezing temperatures than the discomfort of putting on any type of sock or closed shoe. We limit our time outside on cold days, we cover up with beach towels in the car on days when coats are just too difficult.

As I try to focus on helping my daughter as much as I can, I also deal with my own guilt. I just flashed back to a moment. A moment when I knew everything about being a parent.  I was pregnant with my first child. And I was an expert. I had read parenting books. I had scrutinized the parenting methods of friends and family members. And I was sure that I knew better.

I was in line at a store and the woman in front of me had an older toddler in her shopping cart. He was wearing a diaper and a pajama top and a pair of boots. Why couldn’t she just get this child dressed?, I thought. How hard is that? Now, I think, well maybe he had sensory issues or maybe he was just being a toddler, asserting his independence, and his mom was just being smart and rolling with it.

I’m cringing now. Yes, I was one of those people, annoyed by crying kids on airplanes, totally lacking in compassion for any parent with a child in meltdown mode or any child doing something out of the “norm” for their age and stage, whatever in the world normal is.

And that was a slippery slope because it led me to this with my own children: Not being able to accept when they don’t do things “like other kids”, like my friends’ children, or what I thought they should be doing, without a fuss:  wear a fancy outfit on a holiday or shed the training wheels on a bike at a specific age or respond to behavior modifications like a reward chart. It took way too long for me to realize that there was more going on for them. I’m getting better. But it’s a process.

There is more with my daughter. She can’t button, zip, snap, tie shoes, open snacks, or buckle her seatbelt. Her four year old brother has surpassed her on some of these things. For a long time, I thought it was because she was simply refusing. She wanted to be the baby. She had been ousted from her role as the family baby to the middle child and, her refusal to zip her own coat, I thought, was her protest. Because that is what she said. She said she didn’t want to do these things, she wanted my husband and I to do them for her. And for a while, we did. We invented fun ways to make it a game and tried to get her to dress her dolls or the dog or any way she could learn to practice these tasks. But it wasn’t working.

And then it seemed like she just gave up. In frustration, I would exclaim, “You need to do this! You are six years old!” And now I cringe, because I know that it isn’t because she doesn’t want to do these things.  It’s because she can’t.

She has the strength in her hands to do it but something happens on the way from her brain to her fingers, that disorganizes the sequence of thought and activity and makes it impossible for her push a button through a buttonhole or unlock the deadbolt door to our deck or pull off the foil on an applesauce container. We’re working on this now, too.

I regret telling adult family members not to do things for her, not to baby her by putting on her socks for her. I regret that my other kids have heard my frustration and now I hear my 8 year old  parrot my words and tell his sister “You’re six, you should be able to do this!” when he does something she cannot do, like make legos go together the way he wants them and work the remote on the tv.

Here’s what I wish…I wish I would’ve known better. I wish it didn’t take me so long to get to the point of accepting my children more easily than taking away a privilege. I wish I hadn’t complained so much about their behavior to my friends and family. They aren’t trying to drive me crazy, it just feels that way sometimes.

So if you see my child, or anyone else’s, in public,  and…

  • they’re wearing clothes not appropriate for the season
  • or they’re not yet riding their bike without training wheels
  • or they can’t make a hula hoop go around
  • or they won’t put on dress up clothes
  • or it seems like their mom is doing something for them that you think they should do for themselves, like opening their snacks or fastening their bike helmet…

Will you practice acceptance for that child and compassion for their parents? I’m trying to do it too and I don’t always get it right. But I’m trying.

If you’re not sure if SPD is a “real thing” or if you think that maybe it’s just the next label being sold to parents and slapped on kids, let me share with you my daughter’s own words. Keep in mind, we’ve only begun to explain SPD to her.  She just knows that her clothes bother her so intensely for a large part of every day and this often prevents her from enjoying the things that she loves to do. Normal six year old stuff like playing with her dolls or riding her bike or going to her dance class. And she’s very aware that most six year olds don’t get bothered by their clothes the way she does. She worries aloud that this will never get better.  We reassure her that it will, that we will work hard to figure this puzzle out and we will never, ever stop helping her.

Mommy, I’m tired today because I stayed up late last night looking out my window for a falling star. When I see one, I’m going to wish that my clothes don’t bother me anymore. When you wish on a falling star, does the wish come true right away? Or does it take a while?

I used to wish I had a lot of money so I could buy whatever I wanted but now I just wish my clothes would stop bothering me. What if they bother me for my whole life? What if they bother me even after I’m dead?

Please excuse me while I go clean up. My heart just broke into a million pieces.

 

We’re in the beginning stages of understanding this and helping our daughter. If you have experiences or resources to share that you think might be helpful, we’d love to hear them.

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