Wednesday, April 18, 2012

Occupational Therapy Wonder

So much to write so little time, so much to say so little time.  I have been meaning to go on the blog and then one thing gets into the way and next thing you know about a few weeks have gone by. Anyway, truly busy last few weeks.

The most salient event was our meeting with Liz, an occupational therapist. I will keep her last name out for sake of privacy, but I will still post pictures, for she authorized it. I always make sure I ask people if they are ok with being on the blog...some people simply say "no", and that's just fine, others have no qualms and some love it.

I am always happy if I can share pictures or videos, they bring the blog to life, such as your comments, by the way (hint hint).

I went to meet her because the OT we see at school only sees Zoé twice a week for 30 minutes and works only on school based items, such as learning to cut, glue, paste, put on a backpack, take it off, self help such as dressing (Ie. Taking shoes on and off, etc.) things we all basically take for granted. For Zoé, everything seems a challenge, even little details such as putting a jacket on, socks (she cannot do), gluing, pasting, scissors, drawing, etc.

So I decided to investigate ways of helping Zoé and her speech therapist recommended Liz. Well let me tell you, she and I simply hit it off! I LOVE her and I have only seen her once, she is the best. So full of energy, positivity, high energy, engaging Zoé for a full hour that I didn't even see go by.

She immediately told me that Zoe is NOT autistic, but might have sensory issues.
In a nutshell, she talked to me about Zoé's coping mechanism. For example, because her speech is unclear, other kids don't talk to her. On the playground, kids talk a mile a minute, for Zoé to engage in such verbal exchanges is hard, she struggles to let the message out and kids don't give her time to respond! For her it's laborious, for others it is natural. Zoé likes to be in control when other kids don't respond. Because there are many times she is not in control, she's never sure whether she'll be able to perform tasks at hand. Lastly, regarding social issues, because of Zoé's facial configuration, and due to the fact that she cannot smile, kids are probably not enticed to go and talk to her. They might think that she is sad.

Liz then strapped Zoé' in some sort of swing, with little handles on the arms and legs, and had her fly up in the air, body parallel to the floor, face down. Neurologically, flying gives Zoé new sensations, in positions she's never felt before, it enables her to obtain movements she cannot do on her own, and flying fires other parts of her brain.

Zoé got to try a treadmill, and again she felt these new sensations. When we walk, our feet move on a surface that doesn't move, on a treadmill, Zoé had to adapt to a moving floor without latching on to the rail. Wow, it was amazing to see her struggle balance wise. But after these movements her speech seemed much clearer.

She then worked on a huge mattress filled with different pieces of foam, and Zoé struggled walking on an uneven surface.

As far as handwriting, we will probably struggle as well, so Liz suggested a tilt board, so that Zoé doesn't have to engage her wrists so much and she might then be able to write firmly as opposed to the fine lines she writes down.

We had to discuss the poop issue, and for Liz, she thinks it could be tone and sensory. Because Zoé lacks strong muscle tone, her sensory input must be different.

Speaking of which, I just bought an amazing book entitled: The Everything Parent's Guide to Sensory Integration Disorder, and there is a whole chapter on low muscle tone and Myotonic Dystrophy is added to the list of similar symptoms.

I think I should become a professional advocate for people suffering from MMD!

Yesterday we met with Dr. Rab the surgeon at Shriners. He is very happy with Zoé's feet and says that her turning foot is from her femur not her hip. We'll leave it at that for now.

In two weeks we'll be back at Shriners to meet with Dr. MacDonald our rehabilitative medicine doctor, and mid May we meet with a Gastroenterologist at Stanford, I am eager to discuss Zoé's stomach pain, her pelvic floor movements, and to see whether this poop issue is: behavioral, physiological, sensory or psychological.

I will fill you in on our news asap.
In the meantime we wish you a wonderful spring!
Lots of love from the girls on Piedmont Ave

Sunday, April 8, 2012

Unbelievable Story!

A dear friend sent me this link and I wanted to share it with all of you out there.
I was truly humbled by Derek's incredible journey. I realize how much our children with Special Needs have to give to the world and the many possibilities that we have in store for the future.

for more information on his disability and tremendous abilities you can read this: