Tuesday, April 22, 2014

Occupational Therapy and Our Sensory Seeking Whirlwind: A Mae Update

I look at this picture now and think:
This is what she wanted to wear all the time
when she was 18 months old.
Yup... I'm pretty sure the sensory processing
issues were already in full swing...
Yesterday was the in home Occupational Therapy evaluation for Maggie.

The focus as the moment, as we knew it would be, is on Mae's sensory processing problems.  As some of you may remember, when we first started this whole journey, before we had an autism diagnosis, I started reading about SPD (sensory processing disorder) and was stopped in my tracks.  "This is Mae."  I thought over and over again.

At the time I contacted the government website that I found while googling that is supposed to set up evaluations and was promised that I'd be contacted in two weeks for an evaluation, since she was still two at the time.  Instead the weeks slipped by, she turned three and Early On turned her over to the local school district who said they would contact me the following school year (September 2013).  I sometimes wonder if we'll ever hear from them, just out of curiosity not that we've found the resources on our own.  It's been 11 months since I filled out that form and was told we'd hear from them in two weeks and so far... nothing.  But I digress...  Back to yesterday.

Mae is autistic, and like the majority of kids with autism (the number I've heard quoted is 3/4, although that's totally unverified... it's just what I've seen thrown around) she has SPD.  Gina wrote a great post on SPD yesterday for anyone interested in learning more, that was timely since the subject has been on my mind as we've gone through Mae's OT evals.

Here's what I've learned about our girl, and sensory processing, in the past year.

Your child might have sensory issues
if... they like to hang out in the heating vents
because they feel like hugs...
or something...
Sensory processing problems can present in a lot of different ways.  Some kids have a very low threshold for sensory stimulation.  Sounds or lights or touch that wouldn't bother someone with normal sensory responses, might be unbearable for people on this end of the sensory scale.  Sadie actually likely falls on this end of the scale with her auditory processing (that's another post I've been meaning to write, but my mind is still so blown by everything I've learned in the past few weeks that it might take me a little while to process all the information).

There are also kids like Mae.  She's a sensory seeker.  That means that her threshold for feeling things is much, much higher than the normal person and she needs to have those sensory needs met before her body can really begin to function in the way that she wants it to.

On some of the scales Mae tested as a normal kid.  She has "normal" muscle tone and endurance (Okay, I could help but think "Normal?  Really?  Normal? By normal do you mean, super human?"). She scored in the normal range on emotional responses.

For many of the tests she tested as having a milder problems, like for things like visual processing, which for Mae includes liking low, dim lighting, but also liking to stare into scorching bright light sources.

Things get more dramatic when it comes to her vestibular dysfunction and especially proprioceptive dysfunction.  Her vestibular dysfunction basically means that she has a hard time processing her bodies movements, equilibrium and position.  Using my limited not-a-doctor understanding, I'll try my best to explain it as I understand it.

I think sometimes
when I say that Mae has
super hero strength
people don't
believe me.
So I show them
this picture.
She doesn't quite feel things the way most people do.  When she spins around, she doesn't get dizzy.  She can run and jump and go on roller coasters all day long and her body doesn't really register that she's been doing those things.  She craves them, but they don't really effect her, other than the immediate moment when she's in motion and thrilled to be spinning/jumping/flying through the air.  She loves to hang upside down and sleep hanging half off of her bed.

I imagine vestibular dysfunction is strongly related to all the things that break in this house (proprioceptive dysfunction, which I'll get to next, likely plays a huge role too!).

One of the highest scores for difficulties for our little bunny, came in the form of proprioceptive dysfunction.  This also involves her brain's processing of her position in space, but it also includes how her body processes input from her muscles about weight, pressure, stretching and movement.  Right now her body just doesn't process those things like everyone else's does.

Kids like Mae, with proprioceptive dysfunction, are often crashing into things.  They often love to be tightly wrapped up (like Mae does in her weighted vest), or when she burrows into blankets, and usually love roughhousing and jumping off of things.  Squeezing into the vent and trying to squish herself between the couch and the wall would also be part of her proprioceptive difficulties.

All of these actions are simply ways that her brain is trying to meet her bodies sensory needs, with an extremely high threshold.

Of course describing all the test results would take pages and pages and would range from what I've talked about here to loving things like spicy strong tasting foods and smells.

So what happens now?  Now with all the information that the therapists have come up with they begin formulating a special "sensory diet" for her, so that we can help her meet her body's needs over the course of the day so that she can complete the other "ordinary" tasks that are expected of her without her body causing her to have problems that she has difficulty controlling.  In other words, every couple hours I'll have activities that I need to be doing with her, to help her meet her sensory needs.

If only we had a room with
a climbing wall...
I'm trying not to think too hard about what this means for our schedule, which apart from what I'll be doing with her as part of her sensory diet, involves 7 therapy sessions each week at the moment, along with whatever doctor's appointments we have scheduled.  It'll work. It has to.

One of our main challenges at the moment is finding equipment that Mae's exuberant play won't destroy.  I explained how last year I used Mae's birthday money to set up her own little gym with special sensory equipment, with a indoor rice/bean sand box, an enclosed trampoline, and a sit and spin, and within months the screws had been ripped out of the sit and spin, the metal had come apart on the trampoline and the rice and bean box was making her sick since she wouldn't stop eating it (raw) and had to be moved outside.  So there are challenges coming up with equipment that is exceptionally sturdy for our daring whirlwind.

And that is the latest Mae update.

I'm not sure I could have imagined last summer all that I would learn in this past year... As I write this I almost feel like special needs parents get hands on degrees in a variety of fields based on their kids needs.  What a year it's been!

13 comments:

  1. My kid is def a high sensory seeker. She loves all loud noises, especially the vaccum. Have you read The Out of Sync Child? It offers a few activities to help stimulate an SPD kid. We also use music to calm her down or get her to slow down. Music therapy is something I'd like to look more into.

    ReplyDelete
  2. I haven't finished it (I switched over to reading all about autism right in the middle of it) but I've read lots of it (and the out of sync child has fun too for ideas!). I do wonder how music would work for Mae because she loves it! I've also wondered how a service dog would work because animals really seem to calm her down!

    ReplyDelete
  3. This comment has been removed by a blog administrator.

    ReplyDelete
  4. Sound Therapy is effective in healing nervous disorders, heart diseases, neurological disorders, stroke, insomnia, Alzheimer’s, Parkinson’s, ADD and ADHD, Amnesia, Schizophrenia, gynaecological, kidney and lung relates diseases.

    ReplyDelete
  5. Hi Isa,

    We've definitely been supplementing a ton, with supplements and lotions designed for methylzation issues and vitamin deficiency and have completely transformed her diet (she's gluten free and casein free, we started with GAPS but realized that it's really only gluten and casein that affect her).

    Actually I've found the new diet to be ridiculously expensive, whereas with the state funded autism center, therapy is something we actually can do without going hungry (the adults in the family I mean, to afford her diet).

    Diet and supplements can help hugely, I absolutely agree, that's why I have a counter with about 25 bottles on it, but they also absolutely aren't a replacement for therapy. At least with the majority of kids that has SPD and autism that is of severity that it needs to be addressed by therapists.

    ReplyDelete
  6. Actually, having checked out Dr. Amy's website I can say it definitely wouldn't be a path I'd be even vaguely interested in or recommend to my readers, because I don't think Mae needs to be "cured" or "recover" from her autism and think that doctors who generally use those terms tend to be quacks.

    My daughter's brain works differently than yours and Dr. Amy's. That's not something she needs to recover from.

    ReplyDelete
  7. (for those wondering about the two comments above, after looking into a website linked in a comment I decided it wasn't one I wanted linked to from my blog!) I did leave up my response to the comment however, which suggested I should give up therapy and just go with vitamins, because that would fix just about everything...

    ReplyDelete
  8. "My daughter's brain works differently than yours and Dr. Amy's. That's not something she needs to recover from."

    *High five*

    Exactly. EXACTLY.

    Also, kudos again to you for everything you've been doing with Mae. You know I've been following up with your posts steadily because a lot of what you're seeing I can see in Vince. I've always been curious about what you're doing because she and Vince share so many similarities in their sensory styles.

    I haven't gone the route of supplements yet, but it's something I looked into.

    Actually, as you pointed out at the end of this entry, it's like we need to get degrees in a billion things just so we have a relatively good idea as to what we should do to best help our kids.

    But again - that just highlights your last entry, to. Even in this sort of psychotic chaos there is joy.

    (Ha, I mistyped that as "job" first. How Freudian.)

    You guys, as always, are in my prayers. <3

    ReplyDelete
  9. I love reading your posts Gina! Not only because it's so awesome to see you advocating for Vince and accomplishing so much pushing for answers, but also because your love for him is obvious in the posts that it's just inspiring to read! I know it's so rough figuring out how things are going to work and fit together (I think I was practically having panic attacks the first weeks trying to figure out how it could possibly work) but you are doing an amazing job and I'll be praying that it all just fits into place whatever you guys end up doing! Sending hugs to you!

    ReplyDelete
  10. If you're ever looking for a bullet proof mini (aka Rebounders) or regular sized trampoline; we got ours from this company. (It's a homeschooling family of 8 in London Ontario.) We went through 5-6 Walmart quality mini tramps because dd at age (19 in two weeks) still uses it daily. One of her former therapists recommended this as hers has lasted over 10 years with tons of kids jumping on it.
    http://www.qualitytrampolines.com/index.htm
    PS They actually have one that holds a tablet/IPAD; not sure I think much of that but I bet it's a big seller.

    ReplyDelete
  11. As a child I had these kinds of items. My favorite was the phisoball and the swing. I also had an Olympic size trampoline

    http://funandfunction.com/fun-gripper-movement-ball-backordered-until-september.html

    http://funandfunction.com/create-your-own-chewytm-necklace-and-fidget.html

    http://funandfunction.com/tactile-tiger-brush.html

    http://funandfunction.com/no-slip-therapy-platform-swing-2970.html

    ReplyDelete
  12. isa.h42@hotmail.frApril 23, 2014 at 6:36 PM

    I'm sorry if you felt I was attacking you or your daughter and if my joke didn't come through online. Perhaps I engage in too much black humor, but I have gone from $4000 OOP per month down to $1500. I do not have the option of any state centers or help, so OTC supplements or food is far cheaper than my previous $2000/mo medication and $400/mo therapy.

    I will always have brain and nerve damage, but now I have been able to minimize some of its effects through determining where in my methyl cycles I have issues and taking proper supplements as prescribed by my GP. I will also always need therapy, but isn't a reduction in the frequency a laudable goal? Healing doesn't mean becoming "normal" but rather improving the body to its best self.

    ReplyDelete
  13. Hi Isa,

    I totally didn't take it as an attack on my daughter, I simply took it down when I saw that the link went to a site that takes a view of autism that I really, really disagree with and don't want to promote to my readers. I don't have a problem with promoting supplements and good nutrition and even alternative diets (we do all three). I do have a problem with talking about autism as if it's a disease or "brain damage."

    I guess the difference is I don't see her autism as a pathology that needs to be fixed. Her stomach problems, yes, that's why we have the diet. But I don't think autistic people are autistic because they're brains are damaged. People on the spectrum just don't process information the same way the rest of us do.

    ReplyDelete

I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!