Sunday, July 8, 2012

PDD and other stuff...

Wow, I cannot believe how time flies. My last post dates back to June, a month ago and so much has happened I don't even know where to start.
The summer got into high gear quickly, with summer camp, beach trip down the coast and Stanford behavioral and developmental pediatric assessment. A new diagnosis and new acronym got added to Zoé's "file", she has been found to have PDD (Pervasive Developmental Disorder).
It was good to put a finger on a few aspects of her overall development.

She has a hard time socializing, obsesses about unusual things such as being hurt, repeating the same hurtful incidents or little accidents, and has a really hard time to focus for long periods of time.
And spends her time wandering off, constantly on the go, restless, needing to be all over the place at once. needless to say, it is absolutely exhausting...

Of course, she is only 4 and a half and I now question how many 4 and a half year old have an attention span that goes beyond 20 minutes at a time.

The test at Stanford lasted 3 hours and we are still waiting for the formal clinical assessment. We were immediately given the new diagnosis of PDD on that day, though.

The positive side of this whole experience is that we can now add a number of priorities during her next IEP (Individualized Educational Plan), we can have the teachers and aid work on enabling Zoé to socialize, we can help her get more breaks, she needs them to better focus when needed.

As I previously mentioned on some earlier posts, on Saturdays, Zoé also sees an occupational therapist whom we adore.
With Liz, she runs on the treadmill, punches a boxing bolster, walks on uneven surfaces, turns around on a disc-like board, and the dreaded zip line, which Zoe calls the "Zip lion"...
She is terribly afraid of the zip line and we try to teach her self-confidence and for her to master her fears: "Even when it's hard, I can do it," "Even when I'm scared, I can do it."  This is our motto and what we say every time something challenging is at hand.
We tell Zoé, "If you say I can't, I can't, I can't, it is going to make things harder for you."

When she plays with a ball, she often is afraid that it will come crashing on her head, so we need to desensitize the visual part, so that she can get accustomed to it coming towards her.

Liz also works on self regulation with the 4 different zones: the red (For when I am scared, or my brain is on fire), the blue (when things are slow), green (When I am ready to conquer) and yellow (When I am not sure), so Zoé can understand what mood she's in and how and what she can do to self-regulate.
That is something that's not always easy for kids who have PDD for they have a hard time with symbolic language. However, when Zoé is afraid of the zip line she says it is in the red zone, she understands that.

We are continuing horse back riding and that is something that's good for Zoé, for when she is on a horse, there is no getting off and moving about. She has to stay focused and listen to her horse and her body.

The GI pain is now a constant struggle and potty training is on and off.
I am actually meeting a new gastroenterologist this week who wants to know more about Zoé and what she can do to help.
I feel quite honored to be able to share our journey, she's been reading the blog as well and wants us to discuss Zoé's belly.

Zoé is also working on an incline board to help her write, so she doesn't have to use her wrist so much. Also a pen with little weights so that they can make the pen heavier so it will stay on the page. Zoé has a hard time writing and gets frustrated when she has to do desk work. All the minute things we do in our daily life that we take for granted, like grabbing a pen and jotting down a shopping list for example, that is huge for Zoé.

Zoé loves games and the Scatterpillar Scramble that Liz has is awesome, It is a caterpillar that holds little beads and dances while Zoé tries to get them either with her fingers or pinchers. She needs to take them one at a time, but Zoé needs to work on impulse control, she is supposed to count one bead at a time but she wants to put them all in the bag at once. Liz is good at giving her clear and distinct directions: "one at a time, very slowly." it is a great game for it works on fine motor skills and patience.

The other exercises she does is on a velcro board. A type of velcro that is really hard to manipulate. She gives Zoé clear directions: circle the sun, cross the line and get the smallest fruit in the basket: multi-tasking, scanning, memorizing and identifying are all elements involved in this type of game.

Voila for now dear readers. Just thought I'd catch up on the latest.
Hope this post finds you all enjoying the summer.
Much love,