Friday, July 23, 2010

Tools of Technology or Diagonal Fabric?

That is a question that I am no longer pondering, mostly anyways. Instead my entire income from accounting in July has been spent on my quest to solidify our sensory diet, have a more functional family life and a better chance at getting to some better structured education with in the public school system this year (I will try to better explain this statement, no blame intended). Ha, who am I kidding? My income always goes to these things!

Before my spiel on Ava and her stuff I will give you an update on Miss Liz Mae. She is fabulous, ornery, smart, funny, and ever-changing. She is spouting off phrases and continues to be the sweetest and naughtiest little thing I’ve ever heard or seen. She continually seeks new things to master and keeps me skinny.

The family is going on vacation in mid-August to Western Nebraska. We will visit all my peeps and spend a few days on the Niobrara River where I was blessed with my childhood years. I think Liz is going to have the time of her life; the sand hills are the land locked beach of the mid-west. Joe is actually going to come with us too…I think he was last there in 2003 when we moved my mother to Colorado.

On to technology and fabrics.

The first item of note is diagonal fabric which I have been learning a lot about recently. My new friend is a Stabilizing Pressure Input Orthosis a.k.a. SPIO. I have purchased Ava a SPIO vest and one glove – probably the best therapy item I have witnessed at work to date. We have seen some very immediate results with motor planning (including speech) and calming with the introduction last week of the vest in her daily life. I want to emphasize that we are very na├»ve to the long term effectiveness of the product. We have yet to focus much on the glove either – semantics for this mom still.

Like many of you, I have researched, borrowed and discussed more therapeutically marketed ideas, products, processes, etc. than I could have ever imagined even existing. Ava’s PT actually encouraged me to try this after she attended a sales pitch on the product last week through Banner Health. She is not easily excited, especially with ‘therapy marketed equipment’ as she fells MOST stuff is already out there that actually works or at least has scientific evidence of working.

I decided that if a company is willing to give my money back, NO questions asked, after 90-days for a product that may or may not work for my child, it must be a product worthy of an audition. These folks know enough about sensory issues to understand not every kiddo with sensory problems responds (or requires) the same theraputical approach to addressing said issues.  Good stuff, looks like a cool place.

I have heard the most questions pertaining to how long can it be worn and the answer is, all-day. The fabric is where the patent gains life – it moves diagonally. Unlike weight it is a fabric that moves in all directions so every time your child moves the orthodic is readjusting itself. The concept of pressure is also different than weight (sort of) so ask your OT to expand. Ava does not respond that well to weight so I know very little about it. I can use a wet towel most of the time and it is pretty economical, even if not always practical for ‘weight’ stuff. And is the wet towel weight, compression or both?

Really, this sensory-crazed life dynamic is not practical so maybe that should not be the focus.

Here is a short list of some things we’ve seen this week while she was SPIO bound:
*Transitions from floor to sit and sit to floor.
*Time spent exploring the idea of crawling again – she HATES this usually.
*Functionally using hands to explore & interact with her environment - MOTIVATION has been a huge item Ava lacks (it throws us into the Rett’s or Angelman’s category upon first glance with most Dr's too). This is HUGE; she is tactilely defensive and would prefer to use her mouth or feet to explore. Also this is with out the glove so it will be interesting to see what dynamic that brings.
*Time spent exploring her body – rubbing toys on and behind head, rubbing stomach, etc
*Much more oral exploration of words, sounds, tongue outside of mouth, even better chewing & straw drinking. We have had a therapy straw cup for years and out of the blue she drinks from my mom's cup of tea.
*Car sickness seems to be less extreme.

I guess the verdict is out for us and will be for some time. If I were to give any immediate thoughts about the SPIO it would be that you should try it now (they do have infant sizes) and see some type of immediate affect when you do. It certainly isn’t a cure but WOW, pharmaceutical companies could only dream of such simple, calming measures in a little pill.

The technological tool we are embracing is the Ipad. It arrived on Monday and Aliza and I would really like one too. I am very smitten with all the cool applications for making life a bit more organized but overwhelmed with the time I need to put into implementing everything.

My hopes are to not be packing bags and bags full of crap communication system, scheduler, timer clock, etc. to get through our day as we currently do. Also we need to give Ava some consistent way to tell us what she needs and understand how long and what activities she has scheduled for the day. On that same note I am not a money tree nor do I have endless hours to research all the opportunities this has opened up for us.

Here are a few things we are either using or considering…
For communication: Tap2Talk, Proloquo2go, first-then visual scheduler, iprompts, time timer
For photos or enhancements: Colorsplash is MY new love
Music: Beatbox pad, fingerpiano
For entertainment of both girls: Bubble snap, I hear ewe, fingerpaint, glowdraw, lettertrace – ALL FREE and they both attend and interact to them as simple as they may seem
For Ava’s migraines: AccuWeather for health & migraine mate

Any and all ideas, suggestions or experiences with the Ipad and the world of applications would be much appreciated. I have been looking at a few sites like moms with apps and Speech-Language Pathology Sharing for a bit of guidance. I am also waiting for the public school SLP to get in touch with me prior to a final decisions on a communication app. I am certianly not sure where to put our money yet and there are certainly a few choices out there.

Ava is also taking the activia challenge :)



Robyn said...

I don't know much about the programs for iPad, although I feel like I should read up on it. I did read a really fascinating article recently that I posted on my fb about the Proloquo2go and a completely non-verbal child who it has helped tremendously. I'm glad you are having such a great experience with the SPIO, I think Danielle applied for a grant for Megan, and I might mention this to her. It looks like a great alternative (and possibly more effective) than the neoprene weight vests.

Anonymous said...

Excellent review, Amanda. I plan to share with others. I'm a fan of compression garments, too, but have missed the last to SPIO demos here. Conceptually, I would support a parent's decision to buy any brand.

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Have a wonderful vacation! Barbara