Thursday, December 12, 2013
Thursday, December 5, 2013
Celebrating neuro-diversity
I like this catchphrase, feels good to think we can celebrate how different our children are, how their reality is so different from the norm, how their quirky personality can outshine the neuro-typical child.
The past few days have been hard. Zoé is the star person in the classroom this week as we celebrated my baby turning 6.
I worked in the classroom on Monday and left with a bittersweet after taste. Seeing Zoé among her peers highlighted once again how different she is and how indifferent most of them are to her and her challenges.
How can some children be so mean.
Yes, bullying is out and in full force.
Zoé's supposedly "best friend" has been giving her a hard time..."Shut your mouth, I am sick of it!", "Can you eat properly?, "I am having a play date with so and so, and you are NOT invited!"...for some odd reason mean girls work like magnets and Zoé just follows the "dictator" around, wanting to be accepted, to be valued for who she is, to simply be friends.
My mama bear instinct just comes right out and I hurt inside. I feel for Zoé, I can just see what we are going to have to face.
I hadn't seen this coming, or I didn't want to project myself. Zoé is such a love bug, a warm and fuzzy little girl who is confronted to mean spirited kids who don't know what empathy is.
Oh wait a second, let me rephrase this, Zoé doesn't need empathy from her peers, she is bright and joyful and doesn't act out with tantrums, hardly ever cries, after each fall she simply stands up and says "Shake it off!"
She is conquering the world in her own way, but we need to teach her self-advocacy.
The mean girl says something ugly to Zoé and our little bug tells her in response:"But we can still be friends, right?".
and I want to scream, NO, you don't want to be friends, this girl is a not meant to be a friend. I want Zoé to fend for herself, but I am torn as I want to chime in and tell her what to say, and how to act.
It hurts.
The past few days have been hard. Zoé is the star person in the classroom this week as we celebrated my baby turning 6.
I worked in the classroom on Monday and left with a bittersweet after taste. Seeing Zoé among her peers highlighted once again how different she is and how indifferent most of them are to her and her challenges.
How can some children be so mean.
Yes, bullying is out and in full force.
Zoé's supposedly "best friend" has been giving her a hard time..."Shut your mouth, I am sick of it!", "Can you eat properly?, "I am having a play date with so and so, and you are NOT invited!"...for some odd reason mean girls work like magnets and Zoé just follows the "dictator" around, wanting to be accepted, to be valued for who she is, to simply be friends.
My mama bear instinct just comes right out and I hurt inside. I feel for Zoé, I can just see what we are going to have to face.
I hadn't seen this coming, or I didn't want to project myself. Zoé is such a love bug, a warm and fuzzy little girl who is confronted to mean spirited kids who don't know what empathy is.
Oh wait a second, let me rephrase this, Zoé doesn't need empathy from her peers, she is bright and joyful and doesn't act out with tantrums, hardly ever cries, after each fall she simply stands up and says "Shake it off!"
She is conquering the world in her own way, but we need to teach her self-advocacy.
The mean girl says something ugly to Zoé and our little bug tells her in response:"But we can still be friends, right?".
and I want to scream, NO, you don't want to be friends, this girl is a not meant to be a friend. I want Zoé to fend for herself, but I am torn as I want to chime in and tell her what to say, and how to act.
It hurts.
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| Le Gâteau! |
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| See maman, I can close my mouth! |
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| Flying high above the Zoo |
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| Playing golf with Daddy-O |
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| Zoo Fun |
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| Last night of Hanukkah, Zoé lights the Menorah |
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| Hannukah gifts: Caline et Touffy |
Thursday, November 21, 2013
Stanford, Pilates, IEP
Well once again caught by time, frantically trying to find a few minutes to write and update you on the latest from our side.
Zoé's bi-annual appointment at Shriners went well. We will be going back in January to fit her with a new pair of SMOs and for her annual Body Motion Analysis. We did one last year as a baseline and we want to see whether she has improved her gait and balance.
It seems that when she doesn't wear the SMOs she tends to walk on tipi-toes.
Today is the dreaded IEP meeting, where the panel of educators will decide what services Zoé will get. They have reduced PT to once a week, OT to 30 minutes a week and two "push in"sessions into the classroom twice a month, and finally speech to 3 times a week.
I have been thinking about the notion of "early intervention", and how important it is for children to have interventions at an early age. Zoé's body is in full growth and this is the time you want to help her gain strength, stamina, and enable her to reach her full potential. It is not when she is 15 that we can start helping her.
So the IEP is our chance to advocate for Zoé, to show her teachers how she needs those services. Socially, we also need to enable the communication. Zoé tends to show aloofness and detachment when it comes to parties, bigger group settings.
Social pragmatics are important to establish, knowing how to interact with peers, how to read facial cues and body language.
You can say words clearly and use long, complex sentences with correct grammar, but still have a communication problem. In her case, Zoé needs to master the rules for social language.
She is actually much better with adults. I guess her peers gawk at her open mouth and her glasses and don't interact as much. Don't get me wrong she has made two really good friends at school and that is somewhat of a first for Zoé.
As for me, I had a my first "real" neuromuscular clinic at Stanford with Dr. Day, my God! It was a bitter sweet clinic as I got to face my limitations, but I also got to see that I am in very good hands. The nurse who did the intake checked all my muscles: hand and calf atrophies were noticed, feet are really weak, speech is sometimes slurred, trouble swallowing, we discussed all the issues. As for daytime sleepiness and fatigue, that is common in people with MMD-Type 1 (Steinert) and Dr. Day suspects narcolepsy.
narcolepsy |ˈnärkəˌlepsē|
noun Medicinea condition characterized by an extreme tendency to fall asleep whenever in relaxing surroundings.
He asked me if I had a tendency to fall asleep in calm surroundings and laughed when I told him that I had slept though the movie "Lincoln"... It happened once or twice that I had to pull over, off the freeway and sleep in a parking lot for just 20 minutes to be able to finish the trip home.So I am going to see a sleep study specialist at Stanford. Dr. Mignon (A French doc, well with a name like that, he has to be French). Mignon means cute!
We discussed consideration to donate to the Stanford Myotonic Dystrophy Biobank. The biobank will collect and store samples such as blood, muscle, skin biopsies, spinal fluid, and other clinical specimens to share with other scientists who require those for research. Hey, of course, I will donate anything if that means that I can help advance research. Clinical trials are around the corner, and I hope I can be selected to try new drugs or placebos if they can help new research studies and discoveries..I signed all the necessary paperwork and I am now eagerly waiting for the recruiting to start (early 2014).The benefits of enrolling are that specific neurological disorders, such as MMD and other muscular dystrophies are rare, and researchers can have significant difficulty procuring samples needed for investigations. By donating to the biobank, we can help researchers make new scientific discoveries that will ultimately help individuals affected by the same condition as me and Zoé.
On the Pilates front, I feel that I am slowly gaining strentgth. Dr. Day did say that I would never regain muscle mass, but that I should stay as fit and active as I am today. So Pilates is my new motto. With my personal trainer, Emily, we target small muscle groups that one doesn't always use to strengthen my body, and to send the message to the brain to use those muscles, especially those that fire the core.
On the more personal front I have been reading a lot, and my new bible is the book by Andrew Solomon Far from the Tree, a truly amazing and inspiring book. I have covered the chapter on disability, and I must say, it was an eye opener. Some of it is really heavy and is not for the faint of heart, but parenting a child with special needs is not for the faint of heart either! We have children who haven't fallen near the tree but in far away orchards!
I am now also reading The Reason I jump ( the inner voice of a 13-year-old boy with Autism) by Noaki Higashida for the book club I plan to attend on Dec 3rd, a book club organized by Praise, the group of parents who have children with special needs at Zoé's school. My first book club!
Voila dear readers, that's it for now.
I wish you all a wonderful Thanksgiving. We have so much to be grateful for.
Love from this side of the blog to yours.
Zoé's bi-annual appointment at Shriners went well. We will be going back in January to fit her with a new pair of SMOs and for her annual Body Motion Analysis. We did one last year as a baseline and we want to see whether she has improved her gait and balance.
It seems that when she doesn't wear the SMOs she tends to walk on tipi-toes.
Today is the dreaded IEP meeting, where the panel of educators will decide what services Zoé will get. They have reduced PT to once a week, OT to 30 minutes a week and two "push in"sessions into the classroom twice a month, and finally speech to 3 times a week.
I have been thinking about the notion of "early intervention", and how important it is for children to have interventions at an early age. Zoé's body is in full growth and this is the time you want to help her gain strength, stamina, and enable her to reach her full potential. It is not when she is 15 that we can start helping her.
 |
| Zoé and Jack, the therapeutic dog. |
Social pragmatics are important to establish, knowing how to interact with peers, how to read facial cues and body language.
You can say words clearly and use long, complex sentences with correct grammar, but still have a communication problem. In her case, Zoé needs to master the rules for social language.
She is actually much better with adults. I guess her peers gawk at her open mouth and her glasses and don't interact as much. Don't get me wrong she has made two really good friends at school and that is somewhat of a first for Zoé.
As for me, I had a my first "real" neuromuscular clinic at Stanford with Dr. Day, my God! It was a bitter sweet clinic as I got to face my limitations, but I also got to see that I am in very good hands. The nurse who did the intake checked all my muscles: hand and calf atrophies were noticed, feet are really weak, speech is sometimes slurred, trouble swallowing, we discussed all the issues. As for daytime sleepiness and fatigue, that is common in people with MMD-Type 1 (Steinert) and Dr. Day suspects narcolepsy.
narcolepsy |ˈnärkəˌlepsē|
noun Medicinea condition characterized by an extreme tendency to fall asleep whenever in relaxing surroundings.
He asked me if I had a tendency to fall asleep in calm surroundings and laughed when I told him that I had slept though the movie "Lincoln"... It happened once or twice that I had to pull over, off the freeway and sleep in a parking lot for just 20 minutes to be able to finish the trip home.So I am going to see a sleep study specialist at Stanford. Dr. Mignon (A French doc, well with a name like that, he has to be French). Mignon means cute!
We discussed consideration to donate to the Stanford Myotonic Dystrophy Biobank. The biobank will collect and store samples such as blood, muscle, skin biopsies, spinal fluid, and other clinical specimens to share with other scientists who require those for research. Hey, of course, I will donate anything if that means that I can help advance research. Clinical trials are around the corner, and I hope I can be selected to try new drugs or placebos if they can help new research studies and discoveries..I signed all the necessary paperwork and I am now eagerly waiting for the recruiting to start (early 2014).The benefits of enrolling are that specific neurological disorders, such as MMD and other muscular dystrophies are rare, and researchers can have significant difficulty procuring samples needed for investigations. By donating to the biobank, we can help researchers make new scientific discoveries that will ultimately help individuals affected by the same condition as me and Zoé.
 |
| Beach Love |
On the more personal front I have been reading a lot, and my new bible is the book by Andrew Solomon Far from the Tree, a truly amazing and inspiring book. I have covered the chapter on disability, and I must say, it was an eye opener. Some of it is really heavy and is not for the faint of heart, but parenting a child with special needs is not for the faint of heart either! We have children who haven't fallen near the tree but in far away orchards!
I am now also reading The Reason I jump ( the inner voice of a 13-year-old boy with Autism) by Noaki Higashida for the book club I plan to attend on Dec 3rd, a book club organized by Praise, the group of parents who have children with special needs at Zoé's school. My first book club!
Voila dear readers, that's it for now.
I wish you all a wonderful Thanksgiving. We have so much to be grateful for.
Love from this side of the blog to yours.
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.
 |
| 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.
 |
| 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
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