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,

Friday, June 8, 2012

Occupational Therapy

Zoé's first Roller Coaster with Daddy

Horse Show 2012

Hodge-Podge June 2012


  • 459.81 dollars is what I got after battling the system and conundrum of insurance companies... to get Zoé's Horse Therapy covered, Yipeeee! I won the battle. Of course it doesn't cover much (459 out of 1800) but, as my beloved father used to say" Un sou est un sou" a dime is a dime...the cause isn't lost.
  • This taught me to never give up, "the squeaky wheel gets the oil".



  • Zoé's school year ends tomorrow, at Linda beach, and then she starts Summer Camp next week. It should be fun for her to be able to play and relax at daycare also, so that I can find some "Mommy Time".
  • I have been able to paint a lot lately, and it is the best therapy.



  • Yesterday, we went to her CCS clinic, to catch up and reconnect. We hadn't seen Kirk and Kitty for a year, and according to the system, Zoé is entitled to be followed by California Children's Services until she turns 21. After that, nothing is really provided. This is why we are making sure Zoé will have all she needs to take care of herself when she needs it.



  • That makes me think of a few discussions I have shared in the past with my beloved "Moms of kids with Special Needs" support group. We often fear for the future. "What will happen to my child once I am gone?" Who will take care of Zoé?" when we are no longer here? I guess most parents have that fear, but when your child has special needs it exacerbates that fear. This is why in a way, I take my life one day at a time. No need to think about what will happen. We'll cross that bridge when we get to it.
  • In the meantime, let's be trail blazers and conquer what we are faced with.



  • This is another segway to write about the decision that we have made of not having another child. It feels odd to write it, to see those words typed on the screen in front of my eyes. It has been a decision in the making for the last two years or so (feels like an eternity), and the deadline came and crashed over my head. I turned 40, I have MMD-Steinert, and I cannot do that to my body. Also, I have come to realize that everything is going to be harder with Zoé. She is thriving right now and beating all the odds, but everything is going to take more time. She is a sweet, loving and fun little girl with a feisty personality and her own agenda...


potty training is not done
handwriting will be hard
sitting still another challenge
listening and following rules, good luck!
focusing, we're working on
eating with a fork and spoon, on and off
dressing and undressing
socks and shoes to put on
these are just little details of our everyday life, and I am sure Zoé is no different from other kids, though I see struggles where others have none.

Big accomplishment this month: Zoé got her first Horse Show trophy. Her best friends came over to watch as she trotted in the arena, and caught Beanie Babies to throw in buckets.

She is now taking swimming classes, and we stopped SNAP (Special Needs Aquatic Program) as we think Zoé is ready for strokes and really learning how to swim.

Summer time has arrived, and yet the plethora of therapies is still in session for 4 weeks (Extended services). Sam, our beloved PT won't be coming back as she was offered a new job at a Children's Hospital near Stanford. A real blow, we love all the dedicated therapists Zoé sees everyday, for they really make a difference in her life. Their care, understanding, flexibility, way of adjusting to our kids needs, their great sense of humor, motivation, ingenuity, the list is endless.
So long Sam. We'll miss you!

voila for now dear blog readers.
Ze Artist!
Hope this finds you well and enjoying the sun.



At CCS with Kitty the Occupational Therapist
Dunking
Zoe gets ready for her first Horse Show
Zoé got her first Trophy, yeah!!!
Her BFFs Sydney and Adair
Morning of the sleepover
Hey, that's my hat!!! Give it back to me
Merci!
Zoé loves hotels