Monday, January 30, 2012

Little hands

Stubborn Little 4 Year Old

Well what else is new, STUBBORN? oh yes, Zoé knows where she is going and no limitations are set forth. She is walking better than ever (I think) and I truly believe the osteopath should get some of the credit.
New things Zoé can do:
-climb on and off the curb, with NO HELP, all on her own.
It is so funny how we take these minute daily steps for granted, for us, and for Zoé, it's like climbing Mount Everest! She still needs a lot of support with handrails whenever she goes up or down stairs (notice how I use the upward motion first, because, at the end of the day, the journey should only be about going up!!)
-starting to scribble her name. Holding a pen and keeping it steady is difficult, but she is now eager to show off the accent on the "E" of her name...don't forget it, she'll be upset!
-Put on her shoes, for the first time today. Not with me, but at daycare, where she told Pam: "I cannot put my shoes, my mom helps me", and Pam said to try, within 15 seconds, Zoé had both shoes on!!!!
-drawing eyes and mouth in circles I draw for her, and adding spiky hair to those circles, little Picasso in action, I'll post a drawing soon.
Art id not Zoé's forte, I mean arts and craft, where she excels though is in singing, which of course is an art form.
A lot of skills need to be worked upon and Zoé is quite funny when you ask her what she did today (She had physical therapy at 9:00am this morning): "I worked on my motor skills".
When you ask her if she wants to play the bee game where you put leaves in a tree trunk and little bees on top, she says she like to work on her "Fine skills"!!!
Amazing what she comes up with. She is a savvy little girl who now knows and understand that all she does on a daily basis is an integral part of her life!

Wednesday, January 25, 2012

Friday, January 20, 2012

Things moms of Kids with Special Needs Say

I think the cartoon sums it up. There are so many things which need not even be expressed. But then again, aren't we all facing these challenges?

-"Please try harder"

-"I know you can do it"

-"Good job, keep it up"

-"Why did you poop in your pants?"

-"Why are you hiding under this table?"

-"you like to be stinky, really?"

-"When are you going to try to do it on the potty?"

-"Did I give enough Miralax?"

-"I need a break, or I am going to lose it!"

-"Welcome to Planet Special Needs. Enjoy the ride!"

-"Other moms just don't get it."

-After being asked "What is Zoé's diagnosis, is it CP (cerebral Palsy)?" in front of a room full of toddlers in Zoé's classroom, and I want to scream"It is NONE of your business!!!"

How I love denial, it comes in handy sometimes. It is hard to think straight when we are confronted to people's inadequacy facing oneness, differences. If you can see past Zoé's disabilities, her funny way of speaking, her nasal voice, her inverted feet and her thick glasses (Which I think are adorable), you will notice that she is just like any other kid, with a love of life, singing, rejoicing in the little wonders that make her life so awesome. She doesn't know it any other way, and besides, nothing fazes her!

Friday, January 13, 2012

The mother lode or the mother load ?

The mother lode: definition
an abundant source. I like the idea that the word" mother" is included, and "abundant" as well.
After an entire month of being the abundant source of : love, care, comfort, play, reading, providing, caregiving, I am done. I was afraid of a separation anxiety moment, but when Zoé went back to school on the day after we returned I was relieved to see that she did fine without me.
Funny how we tend to always anticipate reactions, fueling the fears and anxiety we may have to feel on a daily basis.
France was great, Christmas came and went, New Year's Eve was a wonderful reunion of beloved friends. Our annual 2 appointments to see the osteopath brought much comfort and I truly do think they help Zoé tremendously. I wish we could see the osteopath more frequently.
Funny enough but I mentioned the "poopy" issue and he did say that all that relates to "guts" and therefore "poop" have to do with "the Mother", the attachment, holistically speaking, Zoé has not "cut the cord" and I probably haven't either. Being a mother of a child with special needs, we feel compelled to always help, provide, forgetting to let go. I know that for Zoé's sake I need to let things fall off, "I have myotonic Dystrophy, but it doesn't have me", it might seem corny, but it has to become my motto.
On a parenting issue, France brought much discussions with my brother and friends.
As I have written previously, Zoé is different, but she is also part of the neuro typical toddler realm, and trying to tame the toddler (Book Title, by Dr. Green) is the most challenging and difficult task at hand.
It is a double edge sword because I need to set rules and limits for Zoé, but because of her disability I probably tend to be less rigid, and more lenient.
What to do? Make things easier for myself.
DO NOT SCREAM, if you do, the toddler has won, seeing a parent scream and lose it, they think, I have managed to let Maman lose it, I have won.
My brother mentioned the "broken record" technique where you repeat over and over what you want your child to do or not do. Zoé finds that very funny and it doesn't work for me.
Long effusive talks don't work either. KIds are concrete, they need direct orders or dictates, rules and principles that must be obeyed. Easy enough to say.
Zoé, like most kids her age, likes to push limits, pushing the envelop farther and farther away. What makes me happy is that at least she is like every kid her age.
France was also good because apart from the osteopath and a bout of stomach bug, we managed to not do much, which was GREAT, no running around, no therapies. Relishing the company of Nanny, friends, family.
Enjoying the peace and quiet of Brittany, fires at night, good food and wine.
I really want to strengthen Zoé's ties with her French family, her cousins, aunts and uncles; she loves them all very much and being far away is hard.
Zoé is now back at school and her physical therapist has sent us an email of praises for her first day back.
For the coming months we have a couple appointments. The first big one is in February at Shriners Hospital where we go do a motion analysis. They will have zoé performs tasks for an hour after placing probes on her that can detect what muscles she fires, and which ones don't work. It will be a good baseline to see how she evolves.
She still falls quite a bit, and needs me to carry her around. 34 pounds of dead weight, but I should say 34 pounds of love, is quite hard on my back. She is lucky that my arms are still strong.
My legs have weakened, but I still try to walk as much as I can, exercising, sleeping a lot, it all helps. Yoga and rest are also part of my daily regimen when I can.
Voila dear readers. I would like to thank all of you who send me emails or comments, making me feel like I have to write. You are my inspiration. Above all, thank you Emmanuelle for your long email, I must respond to it.
With this I wish you all a wonderful New Year, full of Hope for a cure to be found, for love and serenity in your respective lives and most of all for your continued support along our journey.