January 18, 2011

SENSES

Scout was diagnosed with Sensory Processing Disorder about 8 weeks ago.

It started a while ago... we just thought she was being a pain in the ass 3 year old.

"NO! I won't wear underwear....
or my coat
or socks
or certain pants
or shoes that aren't tight enough
or pajamas
or blankets when I sleep"

I thought she was just exercising her independence. One day, back in August however, she said something to me that hoisted the big, red flag. "Mommy, I can't wear socks with writing on the bottom."  WHAT?

So, I started doing some research and thank god for my friend Jen, who I just happened to be having lunch with on the 'sock day.'   She described her sons issues around wearing clothes, or not wearing them, and it matched Scout exactly.

In a nutshell:

"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. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively."

Next step - total panic.  "Its my fault. I haven't been a good enough parent."  I walked around saying this to myself for a few days - and then got over myself.  Why do we always make it about US?

Made an appointment for Scout at Childrens Hospital. We had to wait two long weeks before the appointment.  When you kid won't wear clothes, this is kind of a long time.

I started reading and tried to stay calm. Some Sensory Processing Disorders are related to ADD, ADHD as well as certain forms of Autism.  I was terrified and I had no information except what I was reading online.

The day of the evaluation at Childrens, I was a basket case. We made it into the waiting room and I had to go stand outside. Kids were coming out in wheel chairs, and some, not even old enough to sit up straight in a wheel chair were being wheeled out the door - and the moms and dads were STANDING? How, I do not know. I was aching for all the people I saw that day and so scared about what Sensory Processing Disorder would mean to our family and to Scout?

We got to sit in a room with a double pane of glass and watch a Physical Therapist work with Scout on several activities for 2 hours.  Scout was so amazing during this process. She did so well.

When the evaluation was over, we left with this:

"Children's Hospital has a 6 month waiting list. We will send you our findings."
 I was beside myself.  No tools. No answers. Nothing.

So, I started doing more research and found a place that I could take Scout to once I had the finding - which we were fairly certain, that yes, Scout did have SPD.

We have taken to therapy once a week.  Therapy includes a lot of heavy work and crashing. Jumping, hopping, lifting, pulling, climbing, falling into pillows. She LOVES it.  It also includes a Sensory Diet. Not food related, but homework, essentially.  We do BRUSHING THERAPY three/four times a day. Basically, take a soft bristled brush and literally brush Scout's arms, legs, back and feet.  We do trampoline jumps, and crashing, hopping, skipping and tons more at home, every day.

Scout has turned into a TOTALLY different little girl. She is pleasant and we don't fight. Prior to the diagnosis and therapy, everything was a battle. As you can imagine? You cannot make your kid go to school, or anywhere else, without clothes?

Scout is flourishing. She is COMFORTABLE!!!!!  She is sleeping. She wore NEW PANTS every single day last week (I bribed her) but it worked. She is wearing SOCKS.  She is wearing HER COAT.  I don't hear "Im uncomfortable" anymore. Which was her #1 word for MONTHS.

We feel really great that we jumped on this and didn't brush it off. I am so thankful that we have found a great place to take her for therapy. SPD can be turned around - we are here to tell you.  We are really lucky that we got her in early... they can work faster and changes come quicker (for some).  I am so proud of her.

These are the moments and days, weeks and years of parenthood, you don't prepare for... you can't. 

7 comments:

  1. So glad that this situation has come to rest in a much happier place for Scout, you and Bob. I remember how much stress it was causing you all waiting to find out what the problem was.
    Once again, the human body teaches us that there is much more to it than meets the eye!
    Parenthood is not for the weak, thank God you are among the strong!

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  2. Hey Ashley! I am glad my friend Mike Baltus shared your blog with our facebook groups. We really enjoyed reading it. As a Father I can totally relate to your situation. Thanks again.

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  3. It amazes me what simple things you are now doing to help your daughter. Great post!

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  4. SO glad you are writing about this, and that you shared this. I love your writing, and it helps to feel we are not so alone with all the weird and wild stuff our kids go through.

    Love you guys. Hope to see you soon.

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  5. Hi Ashley, I came across your blog through the SPD Blogger Network. I can really relate to this post. I have a daughter is about to turn 4 in a few weeks. We met with an OT at our church & she had us fill out a bunch of paperwork & determined that she does have SPD. However, that was it & we didn't really understand what it meant. So, I'm wondering how did you find this place where you take your daughter to therapy? I think this is what my daughter really needs. I made an appointment with a behavioral therapist but can't get in until July! I need help before then. Please let me know how you found out somewhere to take her. Thank you so much. I'm really enjoying your blog.

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  6. I just wanted to stop by real quick and say hi as I just found your blog and am now following. I have two children with SPD. I am also following you on twitter, I am @caseysgoodlife. Have a good day

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  7. Also a mom of an SPD kid! Much love to you my fabulous mom, friend!

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