Friday, June 04, 2010

Ava's Atypical Diet

I am finally going to give the blog a little spot regarding the sensory diet Ava has been on since her holiday break from school this winter. I truly believe that the diet has changed our lives but the science verdict is still out. There is a lot of hubbub in the diagnostic world about kiddos like mine whom are yet to be explained.

You also face the paradigm of thoughts regarding Autism, ADD/ADHD, and Sensory Processing Disorder - where they fall on the spectrum or if there even is a spectrum. Blahhhhh blahhhh blahhh…just spend a few weeks at my house and it should be as clear as mud ;) Although Ava has none of these diagnoses we treat symptoms that are common daily.

This post is for Hallie's mom too (sorry I haven't been able to talk with you)!

Here is my preface:

1. I am not and Occupational Therapist and I highly suggest that you work with one if you think a sensory diet may help your child. We are continually tweaking the plan to better suit Ava’s needs.  I continually receive education from the OT based on the whole giddy up weekly.  I have also been blessed with access to multiple OT's this year with dual school programming along with traditional rehab therapies.

2. We have been working on pieces of the sensory diet since Ava was first diagnosed with CVI & unknown neurological issues – around four years ago. It wasn’t a conscious effort on my part rather a direction we have been encouraged to explore by the Anchor Center, our first OT (whom retired) and our current therapist (including PT/SLP - we ALL utilize the plan). This has not happened overnight so pack your patience…

3. If you struggle with accepting the idea of sensory problems you might as well stop reading because it was desperation and accountability (for myself, school & therapist’s) that finally got us to this point – not science (although there is positive research out there about the diet) or a guarantee that the protocol would work for us.

In short Ava’s diet consist of 3-5 meals daily that are largely based on linear movement (swinging usually), neoprene vest, brushing program with joint compressions or spinning. In addition to that she needs snacks another 3-5 times daily at a minimum. She’s pretty good at letting you know if you've missed a snack time...the work (mostly physical) on my part usually pays off as it is better to avoid her having to ask for the goodies.

We have created the snack menu with the public school room, practicality, and varying environments and situations in mind. It is ever-changing and has things as simple as chewy toys, weighted toys on lap, snack, low-stimulation/quite time, hip-bouncing, bear hugs, and jumping to name a few.  We also continually identify and adjust to and for her changing sensory needs...

      *is she over or under stimulated?
      *which meal/snack will help meet the sensory need?
      *what caused the breakdown?

I have learned to be practical when away from home or out for a break. If my mom has her for the afternoon I try to pick something like running down the hill a few times. Next roll down, if she’ll do it. I can’t continually be training my respite to do everything I do but I can at least give ideas for a few ‘fun’ therapeutic activities that are simple and hopefully helpful in maintaining a happy Ava. Besides, grandma prefers to be grandma.

Here are my favorite tools for the diet:
SouthPaw – request the catalog - it is worth your time.
Itinerant Therapy Kit with Platform Swing - it is worth the platform and hardware alone - great price for the package - we use hooks in the ceiling and outdoors - no frame. They should pay me for all this great advertising!
Z-Vibe - my favorite and most convenient gadget.

We use the Platform swing for linear, cylintrical and spinning movement.  It is also a tough transition (about 4") moving from the swing to the floor on days she is not on her top game.  She loves this swing and is getting good at manipulating it to her desired type of movement.  There are many things the future holds for this dandy!

We use the Trapeze Bar to simply stand and practice balance currently.  Once she gets better at hanging on to things she can move to hanging from the bar.

We use the sling swing for calming, linear movement,  getting on all fours and tilting head below body.  She has a love/hate affair with this apparatus.

We have not utilized the dual swing yet but I'm sure as we progress it will be a nice tool. 

My experience has been that the sensory diet is very complex and constantly evolving so prepare yourself for the work load and data collection necessary to be successful.  The medical model is not always enthusiastic about protocol that does not have adequate scientific data backing it up so prepare yourself for the have you have finally gone nutty look when you discuss with the non-believers.  Ava's neurologist actually smiled and said, "I've heard plenty of success stories about this sort of thing."  I'm not sure what 'this sort of thing' means but at least we got the I can't comment for fear of litigation but think it is the right direction look.  The Special Care Clinic is not as enthused with my optimism & research ;)

Ava & her Anchor School PT are pictured below on her horse.  This is an activity that is moving to the top of my priority list as part of our program but I'm not interested in true hippotherapy (mainly because it is pretty pricey).  My focus is getting Ava out more often to ride for pleasure, posture, self-esteem, orientation while mobile & better core control/balance practice.  None of these things require a PT so my search moves forward for a willing horse owner & reasonable price.  The good news is I live in a desirable area to be looking for horses.

Good luck in your quest of finding a happy movement medium for you and your child!


Robyn said...

I'm so glad the sensory diet is working for Ava. It takes so much patience but tends to pay off big! Blake was on the brushing protocol back in 2005 for some sensory integration issues, and it really worked well for him. The results are more mixed with some of the autistic kids that I know. I say whatever works, roll with it (or swing with it!)

Anonymous said...

(Blogger has been down for about 18 hours - don't know if this comment will make-it.)

"My experience has been that the sensory diet is very complex and constantly evolving so prepare yourself for the work load and data collection necessary to be successful."

One of the reasons I think the word "diet" works for describing this concept is the 'complexity'. So many foods, so many ways to cook and serve them.

I support the sensory diet concept, but it is difficult for some parents to implement. How can they believe in it if they are unable to implement it? Which is why there is a lot of failure to show 'evidence' - some people are best at following protocols and have difficulty reading the daily nuances that indicate a need for a different snack.

This is an excellent post, Amanda. I intend to share it.


Anonymous said...

Wow Amanda- You are an amazing mother. I'll be looking to you for guidence and I travel these unchartered waters with Landon. I got watch his OT session at Children's yesterday and the sling swing turned him into another child! I could not believe how calming it was for him! He is responding so well to the weighted blanket and "crashes" and "squishes". I have a whole new armory of fidget toys as well. What did parents do 20 years ago?? Yikes. Thanks for your wisdom. Have a super day! Rhoda

Bea, OT said...

I think you are a Mom OT! As an OT, I commend you for such a well written, understandable essay on sensory diets! I am so impressed!

I implemented a sensory diet for my son, who suffered a stroke. Even as an experienced therapist, I found it frequently overwhelming and difficult. Frankly, I have no idea how I could have done it, if I was not a trained therapist!

You are therefore amazing!