▶ Giddy up Horsey - Video Dailymotion
Friday, October 25, 2013
Friday, October 4, 2013
Monday, September 30, 2013
"We try to teach our children all about life, our children teach us what life is all about." Angela Schwindt.
It has been a while, and I realize I am not as thorough as I used to be in my previous posts. Life seems to be a fast-paced treadmill with therapy galore and a new schedule for me as I am starting work again at Ecole Bilingue. Though it is a one-day a week gig, it will enable me to slowly enter the routine.
In fact, it is a day for myself, where I can dedicate my energy to other kids. I need a day away from therapies, sidelines, bleachers to pause, and work.
Zoé is now so attached to me that I think it might become detrimental to her gaining independence. I have been going to her therapies for almost 6 years, and she now won't even let me go grab a coffee while she is in session with her speech pathologist. She needs to know that I am there, right behind the door, so working will be a real breath of fresh air, for me and for her.
On a different note, this week I attended a meeting called "Praise" where moms and dads parenting children with special needs met. It was wonderful to be in the same situation. We shared ideas about neuro-diversity, children with different learning styles and brain wiring. Children on the spectrum or having physical impairment, cognitive impairment and more.
It makes me feel empowered to fight the fight, to share what I have learned along the way and acquire new knowledge about IEPs (Individualized educational Plan), behavioral intervention and other ways of helping our children reach their full potential.
As Andrew Solomon suggests in his book Far From the Tree "all parenting turns on a crucial question: to what extent should parents accept their children for who they are, and to what extent they should help them become their best selves. " We are ordinary people facing extreme challenges, whether our kids are on the spectrum, whether our kids have a qwerky personlaity, or gross motor delay. what matters is that we are here to help them mature, grow and find their true self.
Yesterday, at the Harvest Festival, Zoé went straight to the tricycle race, without a ticket, and managed to get to the finish line in her own way. It made me realize that nothing troubles Zoé. She finds her own way of conquering her world, Zoé has the determination and courage she needs to go far. This little tricycle will soon become a bike with training wheels and eventually she will join the free-wheeling world of her peers.
At the praise meeting I thought of a few questions I still struggle with:
"When will I tell Zoé that she is different, when do you mention diagnosis, or do you just avoid it."
"How do you approach people who gawk and wonder?"
"When is bullying more than a little snide remark here and there?"
Zoé lives her normal, her world is what she's always known, so she feels good, safe and empowered to conquer and compensate to try and do what all her neuro-typical peers achieve.
My way of dealing with the diagnosis is to show that Zoé and I share the same issues in a medical sense. She was looking in awe at the holter monitor I wore last weekend.
I simply explained that I go through what she goes through, that it is OK. By seeing me wearing it, Zoé realized that she had worn hers this summer and knew that it was all good.
I also added that I go to pilates once a week the same way she goes to Physical Therapy twice a week: "We need to keep our body active and those muscles working." That's my simple way of mentioning Steinert, without using the medical jargon that she wouldn't understand anyway.
Like many parents who have children born with special needs, I often wonder how I can teach Zoé what she needs to know. I never guessed that she would teach me and is still teaching me invaluable lessons.
Zoé, like Kayla, Ati, Simon, Drake, Gabriella and many other children I know and cherish, these are all exceptional kids who achieve little victories daily, instilling wisdom in us, their parents, with each stride they make.
In fact, it is a day for myself, where I can dedicate my energy to other kids. I need a day away from therapies, sidelines, bleachers to pause, and work.
Zoé is now so attached to me that I think it might become detrimental to her gaining independence. I have been going to her therapies for almost 6 years, and she now won't even let me go grab a coffee while she is in session with her speech pathologist. She needs to know that I am there, right behind the door, so working will be a real breath of fresh air, for me and for her.
On a different note, this week I attended a meeting called "Praise" where moms and dads parenting children with special needs met. It was wonderful to be in the same situation. We shared ideas about neuro-diversity, children with different learning styles and brain wiring. Children on the spectrum or having physical impairment, cognitive impairment and more.
It makes me feel empowered to fight the fight, to share what I have learned along the way and acquire new knowledge about IEPs (Individualized educational Plan), behavioral intervention and other ways of helping our children reach their full potential.
As Andrew Solomon suggests in his book Far From the Tree "all parenting turns on a crucial question: to what extent should parents accept their children for who they are, and to what extent they should help them become their best selves. " We are ordinary people facing extreme challenges, whether our kids are on the spectrum, whether our kids have a qwerky personlaity, or gross motor delay. what matters is that we are here to help them mature, grow and find their true self.
Yesterday, at the Harvest Festival, Zoé went straight to the tricycle race, without a ticket, and managed to get to the finish line in her own way. It made me realize that nothing troubles Zoé. She finds her own way of conquering her world, Zoé has the determination and courage she needs to go far. This little tricycle will soon become a bike with training wheels and eventually she will join the free-wheeling world of her peers.
At the praise meeting I thought of a few questions I still struggle with:
"When will I tell Zoé that she is different, when do you mention diagnosis, or do you just avoid it."
"How do you approach people who gawk and wonder?"
"When is bullying more than a little snide remark here and there?"
Zoé lives her normal, her world is what she's always known, so she feels good, safe and empowered to conquer and compensate to try and do what all her neuro-typical peers achieve.
My way of dealing with the diagnosis is to show that Zoé and I share the same issues in a medical sense. She was looking in awe at the holter monitor I wore last weekend.
I simply explained that I go through what she goes through, that it is OK. By seeing me wearing it, Zoé realized that she had worn hers this summer and knew that it was all good.
I also added that I go to pilates once a week the same way she goes to Physical Therapy twice a week: "We need to keep our body active and those muscles working." That's my simple way of mentioning Steinert, without using the medical jargon that she wouldn't understand anyway.
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| Mommy's Holter Heart Monitor |
Zoé, like Kayla, Ati, Simon, Drake, Gabriella and many other children I know and cherish, these are all exceptional kids who achieve little victories daily, instilling wisdom in us, their parents, with each stride they make.
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| Life is sweet, enjoy cupcakes! |
Tuesday, September 17, 2013
Our Journey with Myotonic Dystrophy--A must watch!
It is incredible how this video hits home every time I watch it.
I remember Zoé's birth.
Her stay in the Neonatal Intensive Care Unit.
Her little isolette, her sweet little body and face and hands behind the glass.
The skin to skin contact we shared after that.
The tubes and beeping machines.
Her first series of exercises, her many appointments with PTs and doctors.
Her walker.
Her first steps: 2 years and 2 months.
Her many braces and casts. Unlike Kayla we chose Purple.
Kayla is our hero, a true inspiration.
A beacon of hope in this world of dark uncertainties.
Her prognosis was probably uncertain and scary, but every day she walks one more step towards a cure and in her wake we follow, looking up to her as she proves that miracles do happen.
THANK YOU, KAYLA, FOR BEING WHO YOU ARE.
We love you and your wonderful, dedicated mother, Lisa!
Sarah and Zoé
Monday, August 26, 2013
Scheduling
Zoé Schedule 2013-1014
Mondays: NO SM
11:45-12:45: Social lunch
with Patti
12:45-1:15: Speech with Susie
2:30 Swim
Tuesdays: SM
from 11:45 to 12:15 and 1:00 to 1:45
12:15-1:00: PT with Jenn
2:45: Speech with Shana
4:30: Horse with Babs
Wednesdays: SM from 12:30
to 2:00
12:00-12:30: PT with Jenn
2:00-2:45: OT with Kim
3:45: Horse with Jan
Thursdays: SM from 1:15 to 2:00
11:45-12:45: Social lunch
with Patti
12:45-1:15: speech with Susie
2:45: Speech with Amanda
5:00-5:50: Choir
Fridays: SM from 11:45 to 1:45
2:30: Swim
Wednesday, August 21, 2013
Kindergarten
Excitement was palpable as we dropped Zoé to Kindergarten this morning. Excitement for the new adventure, a realm full of new friends, new words, new books, new exercises, and new set of teachers.
She looked so cute with her backpack on, her bunny shoes (braces) in place, her purple glasses and the mischievous look in her eyes. She waved us goodbye as we watched her get her name tag and cross the threshold into her new world.
This was this morning and I know I have left you behind dear bloggers. As my uncle Said:"Your last post dates back to June 2nd". Wow! A lot to catch up.
We spent an awesome summer, with Grammy Gina and Aunty Wendy visiting, then Nanny and Matt from France.
Zoé was at summer camp for a month as she was enrolled in her extended services for another 4 weeks at the end of school.
We left for France on July 19th and returned 3 days ago. France was amazing as our little mermaid played in shallow pools on the beach, built sandcastles and jumped in waves.
We then had glorious play dates with cousins and friends.
We crossed France in 3 days and spent another 2 weeks in Sauve a small medieval village nestled in the foothills of the Cevennes. An amazing adventure at Nanny's house, with cousins, friends, knights and princesses (Yes, they do a weekly medieval tour of the village in the summer). Zoé couldn't believe her eyes when, out of the blue, three knights walked down the street.
We relished the hot weather and jumped in the rivers nearby on very hot days.
We enjoyed the great food and barbecues, the cousins and friends.
Zoé mastered the zip-line in the trees and the stair climbing all over the place. She marched up and down the staircase in the Grotto Des Demoiselles with help, but inspired by her cousins.
The trip back to Brittany was long, and we decided to drive for 2 days, 14 hours as opposed to three days.
Zoé again was a real trooper, never complaining, sleeping and singing along to the tunes of who else but Anne Sylvestre, our favorite singer.
As far as behavior is concerned, things have not changed much and Zoé needs to navigate the proper behaviors and social cues she faces on a daily basis. This year, on top of all her therapies she will be involved in "social lunches" to learn socialization and social emotional attitudes towards her peers.
We faced a bit of bullying this summer at camp and I told Zoé that the girls who told her to "go away for ever" were simply not nice and didn't deserve her attention. I told her teachers who dealt with it appropriately, teaching the kids that camp means making friends, being safe and inclusive.
I know bullying will be part of our lives, we will deal with it when we need to address it.
So here it is, friends. I add a few pictures and will keep updating the blog as much as I can.
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| Uncle G |
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| Extended Family |
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| chickens and eggs |
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| Pool time |
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| At Sarah and Helena's house |
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| Architecture |
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| Uncle Isaac |
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| Le pompon |
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| Little Mermaid |
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| Knighthood |
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| Swinging |
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| Tree climbing |
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| The scuzins |
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| Daddy-o |
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| French Market |
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| If you take my spot, take my handicap |
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| Beach Bum |
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| Fish |
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| MDA's visit to Google Headquarters |
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| With Uncle Matt |
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| Heart monitor |
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| Sensory play |
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| Auntie Julie |
Wednesday, June 12, 2013
I had to share this....and how our trip to Holland has changed.
- Why having a child with a disability is not like being sent to Holland.
This parable bothers me. It bothers me a lot. While it is certainly uplifting, it makes me uncomfortable, because it denies a central and in my mind, undeniable fact about the experiences parents of children with life altering difficulties face: It is much harder and more difficult to parent a child with a disability than it is to parent a neurotypical child with no health challenges.
In my mind, a more accurate analogy would be this:
Imagine planning a trip to Paris for you and your partner. You get your guidebooks, your luggage, your wardrobe and your plane tickets. You research everything about Paris so you'll be ready when you arrive. You make make reservations. You talk with friends and family about their wonderful trips to Paris and how much fun they had. The two of you talk everyday about how much you want to go to Paris and how amazing it's going to be when you get there.
You get on the plane and take off. Suddenly, without explanation, the plane is diverted. Then at 5000 ft you and your partner are yanked out of your seats, strapped into parachutes you only vaguely understand, and tossed out the door.
Some how you manage to make it to the ground.
At first, you just sit, clinging to one another, checking to see if you have any broken bones. Once you're done thanking god that you're still alive, you dust yourselves off and look at the terrain. You look at each other and reassure one another that you're going to get out of this place.
Your first few days in the desert are exhausting. Just getting your basic needs met feels overwhelming. You feel alone, terrified and honestly- You're not sure if you're going to make it. Sometimes you fight, not because either of you is doing anything wrong- but because you're both tired and frustrated, there is sand everywhere, not enough water and there is no one else to yell at.
After many days of struggle, you finally make it to a village. The first thing you find out when you arrive, is that this settlement is made up of people who also got dumped out of a plane. This is what they tell you:
We are on the moon!
No, this is Arizona.
No, we're in the Australian Outback!
It's the airlines fault.
No. It's the flight attendant who pushed us out.
Oh! Another passenger pushed me out. How did that crazy person get past TSA?
There is no hope of rescue.
Wait! There is a rescue effort underway.
There is an 80% chance you and your treasured partner are going to crumble under the strain of this experience.
No, you won't, this experience will make you stronger!
The desert is a gift!
No, it's not. It's a war and war is hell!
Trying to make sense of this, you look around and say, "How did this happen? What made our plane go off track, when all the other planes made it to their destination just fine? If only we'd flown on a different airline. Who is right? Are we going to end up divorced or not? Is there a rescue party coming? Why are all of you talking at once?
Everyone in the crowd starts to shout LOUDER. Their voices jumbling into a unintelligible cacophony . Then, it dawns on you that maybe there are no right answers, because no one really knows. This is more terrifying than any answer you could have heard.
So despite being overwhelmed, despite struggling for the basic necessities and despite not knowing how you got there, you get on with the business of living your life. It's hard. It makes you angry, not at anyone in particular, just angry because it wasn't supposed to be this way. There are moments when the absurdity of it all makes you laugh. You and your partner discover that there are gorgeous sunsets in the desert and here, the stars shine with crystalline clarity. You smile a little more often and you realize that going to get water every day is doable once you know where the water hole is. You're scared sometimes, yes, but not as often as when you first landed. There are days when you wake up and wonder how you are ever going to make it through. At times, you're lonely for all the friends you had who went to Paris. Sometimes you don't recognize this person you're becoming or the person your partner has transformed into.
The desert is your new normal and once it becomes familiar, it's more understandable. You know which plants are poisonous, how to get sand out of your sleeping bag and how to be patient when your partner is screaming "ALL I EVER WANTED WAS A CROISSANT!" The path to the water hole is well worn. You learn how to handle your own meltdowns and you figure out that there are some wonderful people here in the village. Your skin gets toughened by the sun, and you realize you don't need Starbucks to get through the day.
Sometimes at the end of the day, as you gaze up at the endless sky, you wonder, "What would Paris have been like?" But then you realize that the desert has become your home- and you wouldn't give it up for the world.
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