Our Daughter’s Anxiety Connected to Sensory Processing Disorder
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A few years ago we wondered if AJ had sensory processing disorder, SPD, and if it related to her anxiety.
Sensory Processing Disorder
At the time, her anxiety was so overwhelming, she had trouble leaving the house. She’d curl up in the fetal position and cry. A lot. (It sucked.)
Anxiety, if you ever have experienced it, doesn’t make sense.
After a miserable mountain vacation trapped in our condo, I realized that she needed more help than I could give. Professional help.
So, we went to a therapist. Well, two cognitive therapists. (In retrospect, I would recommend finding a good art or play therapist. That’s another blog post though.)
After seven months or so of weekly therapy sessions and little improvement, the last therapist suggested we get AJ evaluated at Children’s Hospital for SPD.
Fast forward to a diagnosis — SPD with tactile over-responsiveness. In other words, her tactile sensory system was over stimulated all the time. It explained everything – like why she hated to be held as a baby, why she flinched when we hugged her, or why the lining of her socks had to be smooth and thread free. Maybe, it explained the anxiety. We would soon find out.
Occupational Therapy at Children’s
We started occupational therapy at Children’s. Sabrina, the wonderfully kind OT, gave us weekly homework including a brushing technique and joint compressions.
Brushing and compressions worked miracles – which is bizarre because they seemed a bit like voodoo. But the proof was the result . . . after only a few months, she was a different kid.
The biggest immediate result? The anxiety disappeared. (And with it, the curled-up in a fetal position melt-downs.)
Another reward of the therapy? Hugs and the occasional cuddle. Soon, AJ wanted me to lay down with her while she fell asleep. We had some catching up to do! I got to make up for so many years where she didn’t want to be touched.
Update
We didn’t do the therapy forever – at home or at Children’s. For one, it was just too expensive. We stopped when we saw results after about 9 months.
Now, when we see that AJ’s over stimulated or seems “off,” we’ll start brushing again for a few days. Sometimes we give her a full-body, super tight-squeeze bear hug. It immediately calms her down. (I know, it seems weird for a touch-sensitive person but totally works!)
AJ is growing into herself every day, without the interference of her over-stimulated senses. She’s an amazing child with a lot to offer the world. If it weren’t for us discovering SPD, we wouldn’t be where we are today.
Which is why I’m telling you this. Only very recently are doctors considering SPD a legitimate diagnosis. But whether or not it’s in the DSMÂ or people think it’s a “fad,” it’s a very real condition. And something you get help for.
Further Reading
Sensory Processing Disorder involves one or more of the senses and can be either over-responsive or under-responsive. The opposite of AJ is tactile under-responsive, also called a sensory seeker. These are kids who always are touching you, in your lap, petting others, hugging, seeking to be touched. I know of kids whose affected senses are hearing and vision.
SPD Foundation’s website
“Is it Sensory Processing or ADHD?”, ADDitude Magazine
SPD Blogger Network
I hope this helps you – or someone you know.
Do you have any questions for me? Experiences with this?
UPDATE: How Developing the Brain Helped with Sensory Processing, Anxiety & Food Pickiness For Our Kids
My first post about SPD . . .
Thank you for sharing. We too, are on a journey of discovering about SPD with our daughter. She is tactile over responsive, but also has visual and auditory processing issues. I would encourage everyone to have their children’s vision tested by a behavioural optometrist, and consider auditory processing testing too. Our daughter has always surprised us by her outstanding effort at school, but would have huge meltdowns and turn into another child as soon as she was collected from school. We now understand that she was exhausted from trying so hard all day and completely sensory overloaded. OT has made a huge difference and we are now working with a behavioural optometrist who identified that our daughter was experiencing double vision when concentrating for too long among other issues relating to her brain trying to process the barrage of visual signals her over responsive eyes were sending.
I must say that while there are some great books out there, finding professional help has been so challenging, and we have had to jump through hoops to find the right pathways. It is also a challenge financially, and I really feel for the people who are not resourced to find a diagnosis for their child or to be able to pay for help.
I hope this is helpful for someone.
thanks, Karen– and it’s so expensive!
We did vision therapy, too — is that what you do for the double vision?
Karen, my son was just like your daughter. Vision therapy changed his life. I can’t say enough good things about developmental optometrists.
Our son has the same diagnosis. He is going to OT, PT, & ST all w/the iLS audiotory system which we are ordering for at home. It took years to get him diagnosed. I took him to various doctors, therapists, counselors, psychiatirsts & finally this one psychologist that interviewed me about him; read his IEP from school & the results of the ADD, ADHD, Autism Spectrum, & Asperger testing; & spent less than 10 minutes w/him and said that he has SID. I looked at her like she was from Mars because I had no idea what it was. She explained it & she nailed it–that was him. He wants to be held tightly but not touched lightly, hates crowds, loud noises, sudden anything, the feel of paper, when reading black & white pages w/out pictures for a while the words blend into gray, and he has the auditory problem as well. He really wants to like people but he can’t stand to be around them. He slams into me or presses against me & stays there, but don’t let hardly anybody else touch him at all. He is so sweet, loving, & smart. After all of his evals that took months, they can’t believe he’s made it to fifth grade @ 10 years old in normal school , but I work w/him at home all the time. We have just started the therapies & haven’t got the machine for at home yet. Just the therapy is helping, but he had a meltdown the other day & threatened suicide. He later said it was because he was so overwhelmed & that he dosen’t think about things like that normally–isolated event. Has anybody else heard of that?
Poor baby, it is so hard to be in his body. A great child psychologist named Lynne Kenney once told me that for these kiddos, it feels like they have their skin on inside out. Who wouldn’t be hating that?
You are on the right track — stick with the therapies. Even though our daughter fought them EVERY SINGLE TIME (sigh) they did her a world of good. (I’m not sure about the machine? What is that?) We also were doing vision therapy, too, since she had some issues tracking.
We tried several dud therapists — I realized only after a few years with lots of $$ spent. If someone is not working for you– SWITCH!! I wish I hadn’t wasted so much time. Actually, I would say going to OT is better than therapy at this age since it’s SO HARD for them to think outside of their immediate body issues to controlling behaviors. I also recommend Dr. Lynne Kenney for suggestions on next steps. She does phone consults. http://www.lynnekenney.com
It’s exhausting because when a child has special needs, so does the whole family. Make sure you find time to recharge your batteries. I also found I needed therapy to help me be more unconditional in my love and work through my own issues.
One of my friends is writing a book called Sensory Processing 101 that might be helpful to you. http://www.sensoryprocessing101.com.
HUGS to you, mama!! You’re doing great!!
Thank you for sharing this. You are not alone. There are many, many children out there with sensory processing challenges. Their reactions are often misunderstood and difficult for other family members to deal with. I share your challenge and my wish for all parents is to ‘seek first to understand’ their challenging child and ask for help from a seasoned occupational therapist. With diagnosis and treatment, a beautiful transformation is possible along with peace and harmony in the home. Ahhhhhh…
thanks, Ruth — it really does affect everyone in the family. I’m so thankful for peacefulness at home now.
Is it possible to be both over and under responsive?
Yes! Our daughter is both. She hates hugs, clothing with seams etc, but craves messy touch like play do, water, etc. Our OT gave us a information sheet on this, but I think it is also covered in a book called Raising a Spirited Child by Mary Sheedy Kurcinka
I don’t know, sorry.
Yes! Our OT explained that with a combination like this the problem is with sensory modulation. Our son will cringe from touch and noise and become easily overstimulated, but will also run and crash and seek stimulation. It’s a pendulum that can never find it’s middle.
I am astounded that this is still not recognized by the Psychiatric community. Thank you for spreading the word about SPD.
What a wonderful Momma you are to fight for your daughter and get her the help she needs. And the hugs must have made you melt inside. I can’t imagine how hard that must have been to go years without physical affection.
thanks, Rebekah. For so many years I believed I must have been doing something wrong as a parent that she didn’t like to be held or touched. I wish I’d known about SPD sooner.
thanks, Rebekah. 🙂
What a wonderful mom you are to seek help! It can take years to get a proper diagnosis, not to mention treatment that works. You’re totally right, this is all kind of voodoo. I couldn’t understand how vestibular stimulation would help my son. Read every book I could get my hands on and “took their word for it.” Thank you for this post! Getting the word out is so important. With age, this does get better. Maybe it’s because of all the treatment. My son found a small trampoline in our familyroom helpful. He started turning towards that when he was anxious. He also wore his SPIO suit (we called it his power suit) which helped tremendously. He doesn’t care for it now that he’s older. I always know when he’s stressed because he turns on classical music and spends time alone in his room.
Wow, it sounds like you’ve found some great ways for your son to manage this! Talk about a wonderful mom — you are, too, Lisa!!
Lisa, back at ya – you sound like a fantastic mom who knows her child! Good for you and him for finding what works. Thanks for sharing!