Friday, July 23, 2010

Sensory House

One of the MANY things we are learning on this long road with Jada is that what at first may have looked like Autism, may not necessarily be that - now it still could be, we haven't ruled anything out - but she seems to have many symptoms of Sensory Processing Disorder. If you are anything like Joe and I, you hear that and go WHAT!?!? Yep, didn't take me long to find books, websites, and more. We are learning TONS and totally revamping how we work with Jada. If our findings are correct - we need to "talk" to her brain differently. We need to speak to her senses the way they need to be spoken to. When she says "Ow" even when brushing her hair - I am learning that it does really hurt her - that is how her brain processes it - as pain. She says "Ow" when you clip her fingernails. And even winces when you rip paper out of a notebook - her brain says all of those normal, everyday things cause her pain. So we try to work through this - with therapies of all sorts. We have started Auditory Therapy through our Physical Therapist. She listens to carefully-orchestrated music twice a day- there is a set time limit and set CD's - even special headphones - all to hope that her auditory sense can be re-trained or conditioned to different sounds. Along with all of that, we do brushing - yep, all new to us too - but we take plastic soft brushes and literally "scrub" her arms and legs 3-4 times daily. What is amazing is that she LOVES it - when she is most upset, she even brings us the brushes. She knows they help her calm and they are what her sensory system needs.

We have invested in many things that touch her "vestibular" sense - balance - this one is HUGE for her - she is not good with balance - even walking was hard for her when we first got her. So we got a sit n spin; round-bottomed chairs that she sits in and plays, rolls around, etc.(called Bilibo); our friends gave us a slide AND a merry go round - which she LOVES; another friend gave us an exercise trampoline; we found those big bouncy balls with handles that she jumps around on for HOURS; and just recently we purchased a hammock swing.
Swinging Buddies
What I love is that all of things could sure add up dollar-wise, but I just love to grab bargains wherever I can! This Swing is providing HOURS of fun and it was such a deal!! We were going to hang it outside, but I loved Joe's idea of hanging it in the basement so she can use it all year long. (And no, she isn't the only one using it - the boys think they need vestibular therapy as well!!) Even the swing, I was thinking a hammock swing would be so expensive, but at a class I was taking, the instructor mentioned it to me as an aside (she has a nephew who is autistic and she bought one for him). She told me where to find it cheap - I just love that - all the cool ways we hear about things or hear of yet another idea that may help Jada right now. We don't live in a big home - but we are finding creative ways to store them and watch her use them daily. I put this out there hoping these things we are using/finding for Jada may help someone else OR that someone may feel like sharing more ideas. I am getting more and more nervous as we approach preschool - we work on things like colors and numbers daily, but still no retention. We aren't giving up, but we can see that it may be a very long road. I am grateful for the immense support out there - God just keeps providing - sometimes we feel like we are floundering in the dark to do what is best for Jada, but He is good to keep the night light on - He gives us just the light we need to take the next step!

6 comments:

Kim K. said...

My two nephews were diagnosed with sensory processing disorder. Sounds like you have great resources in place for your sweet daughter. Please know that I'm thinking of you.

Janelle said...

Becky, sensory processing issues are very common with visually impaired kids - and I've specifically heard a lot of our aniridia friends talk about it! All the things you are doing sound awesome. I've heard REALLY good things about brushing programs and Bilibos. Our vision teacher hung a low trapeze in our living room for Elli to play on - to help with her vestibular system and sense of balance. She also has a plastic slide in the house to use as vestibular therapy as well! I'm assuming you've already read "The Out of Sync Child" or at least been told about it?

Thank you for your honest posts - I think all of us with special needs kids have days where we feel overwhelmed on our long roads...but it somehow helps to hear others talk about it, so you don't feel so alone!

Janelle

Teresa said...

Depending on your filing status, you can probably write off anything that is needed for her therapy. Keep your receipts and check with your accountant.

You are doing an amazing job with Jada and I love how you are striving to understand her so you can best help her.

hollym. said...

Hi Becky!
Sounds like you are doing Great work with Jada! Some things that we had our girlie do was crawl, roll around the floor while laying down, and stand and spin. Also, a rocking chair or spring horse while listening to music is great. We would do the crawling, rolling and spinning with her.
There's a book that has activities that goes along with the Out of
Sync Child. It's great!
Take care,
hollym.

Sue J. said...

Nice to meet you in these beautiful pages, Becky! Jada is beautiful, too!!

The autism spectrum is so wide. Our little girl, who's as old as your Chloe, knows many words, but she doesn't use them when she needs to. She has sensory issues, too. We have a hammock swing/trapeze in her bedroom doorway!

What's great is that you are really tuned in to what Jada is telling you. That will help you determine what sensory interventions will work well with her--because some of them will just make her feel worse. Swinging and jumping, tight pressure on her body, might feel good--especially before tense/stressful situations that you know are triggers for her. The Wilbarger protocol (brushing) can be very effective. Mine likes to be rolled up like a hot dog in a blanket and rolled!

Want to recommend the abilitations.com website (catalog) to you. Lots of items to browse in there. You might be able to work with your preschool to get some of these things. (And, frankly, sometimes I just need a name to Google elsewhere, because these items can be cost-prohibitive.)

Anyhow, the most important thing is to continue to read what Jada is saying or showing, and keep praying for God to open your eyes to what He wants you to do. I find that the hardest thing is just being able to wait for His maturing of my girl....rather than me trying to do it for Him!

Heather said...

Becky,
I haven't been able to access your blog for so long! Google Chrome is way more permissible though than that old Explorer is, and it's good to check up on you! :)

I wanted to pass along this link that has been so helpful for us when I start to run dry of ideas:
http://mommypoppins.com/ny-kids/99-sensory-activities-for-any-child

Also, I attended a couple of workshops at Summit led by Dr. Karyn Purvis, and she encouraged parents to provide a sensory activity for our special kiddos every two hours on the dot, or more frequently if needed. She had lots more helpful info -- have you read her book or seen any of the webinars she's done?

We need to catch up sometime!!!

When you are harvesting your crops and forget to bring in a bundle of grain from your field, don't go back to get it. Leave it for the foreigners, orphans and widows. Then the LORD your God will bless you in all you do.
~Deuteronomy 24:19

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