Thursday, February 11, 2010

Sensory Processing Disorder- Our Story

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. - SPD Foundation website

You know, I'm often asked how I knew that my daughter (The Wild Child) had Sensory Processing Disorder (also called Sensory Integration Disorder). How did I know that something was off?

That's a loaded question. It wasn't something that just "hit" me. And honestly, we didn't get to that diagnosis quickly.

WC was born with a hemangioma, which ulcerated after a few weeks. This wound was open for about 2 1/2 months, and she was in great pain. So from the beginning, there was rage and we were unable to comfort her. You can read more about that here.

Of course the hemangioma did eventually heal, but we were left with what we thought were behavior issues. She became a biter (others and even herself!) and was quite aggressive around 18 months. There was a one-week suspension from daycare and many many many phone calls and meetings.

Right after her second birthday, I stumbled into a biting workshop at our local county health department and they mentioned SPD and it absolutely snowballed from there. Evaluations, more meetings, referrals, and we found our dream OT who finally helped us reach and slowly get a handle on our girl.

It's been about 2 years since our diagnosis, and we've come a long way. We're still doing maintenance listening therapy and seeing a behavior therapist that offices with out OT, but WC has become so much easier to be around- her teachers even describe her as delightful at times!

Many, many books were recommended to me but one that hit home on our journey was The Out-of-Sync Child. I checked it out from our local library and flipped through it on my way out the door. After a few seconds of flipping, I felt my eyes fill up with tears and I moved towards the wall so I could lean against it for a second.

I found it. I found a paragraph that I should print out and give to everyone that knows WC.

From page 193:

A mother wrote me this letter: "By the time Rob was two, I felt he had a special need, but I couldn't figure out what it was. He required constant attention. Time-outs didn't work because I couldn't contain him. He was defiant, disobedient, disrespectful, and demanding. He was always busy, always talking (great verbal skills!), strong willed, contrary, and easily frustrated. I felt blessed to have Rob, and wouldn't trade him for the world, of course, but he constantly tested and rejected me."
And more on the next page.

"What was the reason for his behavior? How could I regain control? What method of discipline would get through to him? If his behavior was an attempt to get my attention, how could I supply it in a way that would satisfy him? How could I help a high-energy child channel his energy in a positive direction? I was desperate for answers."

If you replaced Rob's name with WC's and switched out them hes and hims for shes and hers, I could have written that, word for word.

You don't know how good it feels to know that you are not alone.

To read more about our Sensory Processing Disorder journey, click here.

Disclosure: This post contains Amazon affiliate links.


sprinkles said...

I had no idea what WC stood for or that she suffered from Sensory Processing Disorder. Thanks for educating me about this disorder!

Megan@SortaCrunchy said...

I think it is so, so important for parents to keep talking about this . . . My youngest sister has special needs, and I know it was very isolating for my parents as we were growing up. I think it is wonderful how many parents can be connected by this in this age in which we parent. Not that it makes the challenges easier, I guess - just knowing you aren't alone.

Thanks so much for taking the time to share this part of your family's story!

Matt & Carrie said...

You are an AMAZING, DEDICATED mom who has a heart full of love for her WC. I am thrilled that you have found support, education, and comfort when you needed it. You are "supposed" to be her mama!!

Something In The Glass said...

I've read mention of SPD on your blog before, but never really knew exactly what you were talking about. Now that I've read this (and a little more about it on the internet), I'm thinking a child I know might have this issue. So, thanks for posting may be a good starting place for the mother.

ringmaster said...

another great book is raising a sensory smart child

The Lady in Charge said...

I just saw this on Baby cheapskate- over on the left hand side. What caught my eye was SPD. We have just learned that our son may have this. Reading your quote from the book made me cry as it is exactly what I would say about my son....
I wasn't too sure that he actually had SPD but now... I have read some other books that helped a bit with the behavior. The Challenging Child and The Difficult Child- both are on amazon. The books don't label it as SPD but touch on so many parts of it as personality and temperament. They helped but we are still struggling with his constant talking and demand for attention. Whew, it is hard to find ways to give enough and not burnout.
Thanks for this post!

C. Beth said...

Having watched you go through this (from afar) it's so encouraging to hear that things are improving. I think it sounds like you have so much more peace with the situation. I know it's still challenging, probably always will be--but you're doing a great job, mama. :)

Brittney said...

I am so excited that I found your blog. My daughter (4.5 yrs old) also has SPD. I knew she was "different" very early on, but we didn't officially know what it was until she was about 2.5. I'd love to keep in touch with you. My email is

Anonymous said...

I stumbled upon your blog through another blog and I am glad I did. My son also has SPD, and is 3 years old. I knew that something was different from early on but I could not put my finger on it for the longest time. I also went and checked out the Out of Sync Child and really had my "aha moment" It was like a huge weight lifted off....and so the therapy began. With already 3 months of OT he is like a different kid. We figured out what works for him and activities that calm him. I would love to stay in touch. It will be nice to stay in touch with someone who understands!