What is it like to live with sensory processing disorder?

As I revisited our top 10 posts on this blog from 2012, I stopped and reread a lot of them. It’s kind of like past me giving advice to current me, which is cool.

One that really caught my attention again was 5 ways to constructively deal with your kids’ mood swings. I mentioned in the introduction to that post that I don’t often mention that Ashar lives with Asperger’s, obsessive-compulsive disorder, sensory processing disorder, and attention-deficit hyperactivity disorder.

This isn’t putting my head in the sand – we spent years “getting” those labels and, sadly, they’re not things that go away or get cured. But they are things that can be mitigated, and that’s been the essence of our homeschooling journey: Find ways to limit the things that cause a problem, and find ways to quickly nip rising problems in the bud.

I’ve read some great things recently by other bloggers on how to plan your homeschool for your special-needs student, and how to deal with holiday stress when you have a child with stress-related or stress-exacerbated challenges.

It’s hard for me to explain how hard the holidays are for us, specifically as it relates to sensory challenges. Since we returned home from the last of our Christmas celebrations, Ashar has slept 12 to 14 hours a night, and she’s STILL not back on a moderately even keel. (Excessive sleep is a major sensory-defense response.) She’s bitten her fingernails to the point that the nails are almost missing and they’re bloody and scabbed. (That’s a common OCD response to stress, which is in turn a common Asperger’s trait.)

Sleeping in other beds, sitting on other sofas, eating other foods, using different bathrooms… these are things you take for granted when you travel for the holidays. In our case, we do as much as possible of our celebration at places Ashar spends a lot of time – usually our house, but also at her Nana’s house and my best friend’s house, where she routinely goes and even stays overnight. The more familiar the place, and the closer it is to “home,” the more likely it is for Ashar to be able to process the events.

Travel happens. (Heck, we took a 2007 driving road trip looping a total of 10,000 miles across the United States, though that was before we knew all of what we do now!) But when we combine traveling, new “stuff” (like Christmas toys and clothes), colder weather (also a sensory “ick” for Sarah) and changes in routine, like getting up at different times, well… wow.

We don’t have the types of meltdowns we used to, but the signs are there if you know what to look for.

So our past few days have been as “NOTHING” as possible. We went to see the Hobbit, which Ashar was desperate to see – but we went during the New Year’s Eve overnight showing where there was no one else in the theater, save 3 quiet older teens. She slept in til 3 p.m. one day – and we were purposely quiet to avoid waking her. She hasn’t gotten dressed some days, or showered in… well, let’s not talk about that amount of time – that’s a subject for another post.

And it reminds me of this video, which I’d saved almost two months ago and wanted to share.

Please take the time to watch this – with the sound on, and as loud as you possibly can stand it and then some – and to read the accompanying NPR blog post, Mugged By Sound, Rescued by a Waitress.

This is our life when SPD overwhelms it. And I am so thankful to this video for showing everyone a glimpse at what that’s like.

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6 thoughts on “What is it like to live with sensory processing disorder?

  1. We aren’t quite as bad here, but dealing with post holiday unsettledness. Amber has SPD, only.. I can’t imagine the others combined. She has been grumpy and irritable for days. Crazy mood swings, easily disappointed when things don’t go as she planned for the day. Requiring a complete and detailed outline for each day as soon as I wake up. She’s also been sleeping a VERY long time each night. We are trying to have purposefully calm and do-nothing days to get her back on schedule before next week.

    Good luck getting settled after the holidays. We have a small glimpse of what you are working through.

    • Christy, I’ll be thinking of you and Amber! That sounds JUST like our situation – easily disappointed, lots of sleep, lots of “but I have to know XYZ or I’m going to freak out.”

      Much love to you. I’m so glad to know I’m not alone – and neither are you!

  2. Reading about Sarah’s experience and struggles has helped me to recognise ways I can look after myself better. I don’t think I have SPD, but I struggle with sensory overload more than most of my friends and reading this blog has allowed me to give myself permission to say “I can’t handle that right now”. I’m still learning how to manage my behaviour – I start CBT in a few weeks and I’m hoping that will help – but I wanted to say how much it helped me to see that it isn’t necessarily a positive character trait to do everything at once, and pretend to be enjoying it. So thank you for that gift!

    • May, thank you so much for your kind words – and please know we will keep you in our thoughts! I think that an interesting side effect of this journey has been that I’ve done a lot of what you’re describing too – become more conscious of my own “overload” and when I’m just going through the motions without enjoyment. Some days, it’s hard to see the blessings in this situation, but days like today, I see notes like yours and think – it’s worth it to have gone through this, because maybe it will help someone, and because we’re all so much more aware!

      Many prayers and good wishes on your CBT. I have faith it will be beneficial! 🙂

  3. WOw that video was an eye opener.

    When my oldest was 2.5 y.o. we took her to Disney. I really didn’t want to go… in my gut, I felt it wasn’t a good idea. I was pregnant with our son and I just felt our daughter was not ready for all the stimulation at the park. It was one of the hardest times in my life and hers, although I don’t think she remembers. I made sure to create a scrapbook with only the happy pictures and that is what she remembers. But I remember the tantrums, the regression (she wanted to nurse again), and of course, me being a first time mom knew nothing about nothing. So as she had her tantrums I had mine. It was a horrible week. Every time I remember it I have to forgive myself. 🙁

    Anyway, 4 kids later, I have come to realize that we all have sensory overload at one time or another and that one of the things we learn as we grow is HOW to cope with that. I have noticed that one of my kids likes to have her quiet time on the computer watching movies. Another likes to play with legos or other manipulatives. The little ones take naps… my oldest (I think she would probably be labeled something if I had taken her to a “professional”) needs one on one time with me. We don’t follow a tight schedule but she needs to know what is going on or what is the “plan” everyday. Sometimes I will NOT tell her plans on purpose because they just cause her to feel anxious, specially if we are going somewhere or doing something special. Although I noticed that if it’s something that is a routine (like karate every week or co-op) then she no longer stresses.

    I remember last summer we decided to take each child on a private date with just us, the parents, while the rest stayed home with the grandparents. My oldest threw up at the restaurant because she was so anxious about it for weeks. It’s “funny” how people react to things differently. We didn’t make a big deal out of it… we told her that it was normal and not to worry about. We teach her to calm herself and we see her improving.

    Like everyone, anyone can get overloaded and like someone else said your journey has taught me to be compassionate of people’s differences and needs…. and even mine. I have heard myself say more than once “i can’t talk about this right now. I need to calm down for a minute and gather my thoughts before we can finish this conversation.” WOW!! that made all the difference in the outcome.

    So yeah, thank you for the courage of sharing your journey and I think you are an amazing Mom. 🙂

    PS your blog made me think how instinctively we have done things and they have worked out so well for us: like renting the same place every year for our summer vacations; having grandparents come visit at the same time of the year; keeping bedtime routines; not overdoing holidays or celebrations but keeping them low key… all those things have kept our kids calm and mostly without major reactions to life. So again, thank you for the eye opener.

  4. Tereza, thank you SO MUCH for sharing your story – I am the not-proud owner of many of those experiences that I have to forgive myself for upon memory of them as well and like you said, you just don’t know what to do until you’ve been there!

    It truly is amazing, as you described, the things you come up with that work for your family. We have things that we do almost instinctively that I never sat down and identified as “coping strategies” the way a therapist might, but that’s what they are, and I would bet that every family has theirs to some degree, whatever they might be!

    Thank YOU for the kind words and support. It means more than I can say!

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