So proud to be part of this community. The members' dedication, care, love and support are outstanding.
This movie is bittersweet, a constant reminder that the disease is there and progresses.
The battle continues, every day to find CARE and a CURE.
Thursday, September 10, 2015
Living with DM: The community speaks
So proud to be part of this community. The members' dedication, care, love and support are outstanding.
This movie is bittersweet, a constant reminder that the disease is there and progresses.
The battle continues, every day to find CARE and a CURE.
Thursday, August 20, 2015
Compensating
Compensating: I am not going to define the word, you can look it up in the dictionary or on wikipedia.
Yesterday was the highlight of my year so far, after spending 2 hours with a developmental pediatrician who just "got it". She managed to understand what our life has been all about and how much loss we have been facing, the beauty of having Zoé in our life and her reality. How Zoé navigates her world in a way that none of us can come close to understanding.
How she has had to become malleable, pliable to fit in a school, in a world that is so different from the world her peers live in.
Yet, she has known no other way.
But nothing fazes her. I have said it countless times. What do I know, actually? Maybe she does suffer from social anxiety, maybe she frets about not being able to swing on the monkey bars like her classmates, maybe she wishes she could draw and write and read as fast as her friends.
And maybe not.
What I know is that Zoé has mastered the compensating skills like none other.
"I am in clinic" you are disrupting my play when I come into her room while she cares for her stuffed animals, stethoscope in hand.
What does she know about clinic, oh let me tell you, that is a word part of her lexicon, her jargon. Should a 7 year-year old need such a word? Well, Zoé has gone to numerous "clinics" where you see a plethora of specialists, where you are the center of attention, where doctors probe you and touch you, and poke you. So when she does the same to her stuffies, that is her way to compensate, that is her way to diffuse the woundedness, to make normal what should not be normal. Maybe I am being too wordy, you'll have to excuse me, but I am still elated by yesterday's meeting with Doctor Amazing (Will keep her anonymity, not sure she wants to be featured in the blog.)
Old Post I forgot to publish...
Yesterday was the highlight of my year so far, after spending 2 hours with a developmental pediatrician who just "got it". She managed to understand what our life has been all about and how much loss we have been facing, the beauty of having Zoé in our life and her reality. How Zoé navigates her world in a way that none of us can come close to understanding.
How she has had to become malleable, pliable to fit in a school, in a world that is so different from the world her peers live in.
Yet, she has known no other way.
But nothing fazes her. I have said it countless times. What do I know, actually? Maybe she does suffer from social anxiety, maybe she frets about not being able to swing on the monkey bars like her classmates, maybe she wishes she could draw and write and read as fast as her friends.
And maybe not.
What I know is that Zoé has mastered the compensating skills like none other.
"I am in clinic" you are disrupting my play when I come into her room while she cares for her stuffed animals, stethoscope in hand.
What does she know about clinic, oh let me tell you, that is a word part of her lexicon, her jargon. Should a 7 year-year old need such a word? Well, Zoé has gone to numerous "clinics" where you see a plethora of specialists, where you are the center of attention, where doctors probe you and touch you, and poke you. So when she does the same to her stuffies, that is her way to compensate, that is her way to diffuse the woundedness, to make normal what should not be normal. Maybe I am being too wordy, you'll have to excuse me, but I am still elated by yesterday's meeting with Doctor Amazing (Will keep her anonymity, not sure she wants to be featured in the blog.)
Old Post I forgot to publish...
2nd Grade: here we come.
Another year, another description, another addendum to the file, another testament of how far we've come and how far we've got to go as well.
Here is the painting in words of our Lil Miss Zoé for her new second grade teachers.
Zoé Berman:
Zoé
is a fun-loving girl with a wild imagination. She loves to pretend play and we
sometimes have to channel that imagination.
She
is bilingual in French and English and loves to sing and perform.
Zoé
was diagnosed with Myotonic Muscular Dystrophy (Steinert, Type 1) at birth. Her
diagnosis means that she has a multi-systemic disease that involves gradual
atrophy of her muscles (Heart, hands, neck, feet, trunk, etc.)
Due
to her disability, she can get tired and lack stamina. Sitting for a long period
of time gets really tiresome and therefore it compromises attention span and
her staying focused.
We
would like to make sure that we take into account energy preservation and
perhaps allow some short breaks to enable her to regroup and stay on task.
Zoé
is very comfortable with adults less so with her peers, perhaps this being due
to her facial configuration and low facial muscle tone. Her speech is
compromised and therefore it is not very clear. We would really like the social
aspect to be taken into account. Making sure that all social activities such as
lunch and recess take place outdoor as opposed to room 20.
As
far as classroom accommodations, we would like for Zoé to use a stadium chair
(we will provide one) during rug time instruction. We also have a slanted board
that can be helpful. Making sure Zoé can sit in front of the teacher to read
cues would also be helpful.
All
in all, we look forward to this year in 2nd grade for Zoé to thrive
and blossom. We would love to see her become an avid reader and for her to make
new friends.
As far as services go (OT, Speech, PT), if possible, we'd like for them to be as less disruptive as possible, of course taking account the class' schedule and other arrangements.
We
thank you in advance for your care and dedication.
Fondly,
We enjoyed the company of wonderful friends, family and newfound friends (Lorenzo and Francesco, in Italy). Seeing old friends 15 years down the road, as if no time had elapsed, picking up where we had left off. It was just wonderful seeing Morena and Massimo in their gorgeous house surrounded by the most beautiful mountains of northern Italy.
A short getaway to Venice was the highlight of David's summer.
Annecy by the lake with the cousins was wonderful: paddle boats, water slides and make-believe.
Deolen was our haven of rest and relaxation.
We got back a week ago, got over jet lag and we've already started OT, Kumon, and a first appointment to Shriners Hospital. Never a dull moment.
Wishing you a blissful start to the school year.
From our side of the screen to yours.
Tuesday, June 23, 2015
Just stuff
I don't know where to start, all I know is that I have let you down for a while.
So much has happened, and though this blog is about Zoé it is also about a lot of "stuff", the daily load, the ups and downs, the challenges, the good and the not so good, but above all about our life.
Utah 2015--Round 2 was awesome, as usual. The dream team of nurses and doctors, of Speech, Physical and Occupational therapists were above and beyond amazing.
You know why they deal with pediatrics, because it is what they do best. It is hard, to see our kids poked and prodded, but yet handled with so much care and consideration.
The last visit to our new pediatrician's office was unbelievable. She didn't even look at me, the mom, but looked at Zoé as the little person, the patient asking her a plethora of questions about her life, school, her family, etc. and then asking her whether it was ok if she discussed Zoé's medical condition with me! Who does that? Unbelievable.
On a side note, the doc asked Zoé: "What do your parents do?'
answer from Z: "Well, my mom she mainly cleans...and my dad he is on the computer a lot, and he is really funny when he does the chicken dance..." Oh my G-d....I contained myself to not burst out laughing...and was thankful that she didn't go on giving more details.
Cranio-facial follow-up not much to report. Zoé's sleep study went fine and her oxygen level stayed at 94%, so we are all good.
The bad part is that she needs braces...I do not know how she will do with a retainer in her mouth when she cannot stand a cleaning. But being Zoé, and the trooper, she will probably do fine.
Remember the helmet, she did great.
I didn't do so well, at first, but then it became part of the routine. The orthotics, same thing, the Kinesio tape on the feet, easy! The glasses, piece of cake.
Neuro-Study at Stanford and muscle biopsy #2 done and healing.
Hard to know how much I have changed. I can see it in my calves, the atrophy is rampant, and the lack of balance and the lack of stamina.
I tried a gluten-free diet to see whether it would help for energy level and in fact it didn't do anything.
Back to eating more protein and sleeping more for energy preservation.
Neuro-Psych Eval: NO AUTISM ! Oh my gosh, we met the most amazing doctor yet. Unbelievable. she feels that Zoé is super smart in the way she navigates her world. How she sees it in such a way, it takes people years to do so. They pretended-play together and in every situation Zoé had one of her characters in a wheelchair, it is part of the woundedness, how she transcends it and accepts it the way it is for her.
I asked the doctor why Zoé never drew hands on the people she drew. Simple answer, because for Zoé, hands are difficult, the fine motor skills are not quite there yet, so why bother with the hands.
The doctor will come to our IEP and gave us practical ideas for Zoé to preserve energy. We'll discuss it with the team upon returning to school.
Graduating to 2nd grade we are proud of our champ who finished the year beautifully. The reading has picked up and so it is all good. We need to still practice, but I will be sure to take a lot of books with us to read, and the math games we do.
We are leaving for France on the 1st of July, it has been one year and way too long.
We cannot wait to have NO therapies, to sleep in, go to the beach, to see the cousins on the Swiss border and Italy with Daddy-O.
Come a long way? Oh yes we have!!!!
have a blissful summer and we'll see you back on the blog in the fall.
So much has happened, and though this blog is about Zoé it is also about a lot of "stuff", the daily load, the ups and downs, the challenges, the good and the not so good, but above all about our life.
Utah 2015--Round 2 was awesome, as usual. The dream team of nurses and doctors, of Speech, Physical and Occupational therapists were above and beyond amazing.
You know why they deal with pediatrics, because it is what they do best. It is hard, to see our kids poked and prodded, but yet handled with so much care and consideration.
The last visit to our new pediatrician's office was unbelievable. She didn't even look at me, the mom, but looked at Zoé as the little person, the patient asking her a plethora of questions about her life, school, her family, etc. and then asking her whether it was ok if she discussed Zoé's medical condition with me! Who does that? Unbelievable.
On a side note, the doc asked Zoé: "What do your parents do?'
answer from Z: "Well, my mom she mainly cleans...and my dad he is on the computer a lot, and he is really funny when he does the chicken dance..." Oh my G-d....I contained myself to not burst out laughing...and was thankful that she didn't go on giving more details.
Cranio-facial follow-up not much to report. Zoé's sleep study went fine and her oxygen level stayed at 94%, so we are all good.
The bad part is that she needs braces...I do not know how she will do with a retainer in her mouth when she cannot stand a cleaning. But being Zoé, and the trooper, she will probably do fine.
Remember the helmet, she did great.
I didn't do so well, at first, but then it became part of the routine. The orthotics, same thing, the Kinesio tape on the feet, easy! The glasses, piece of cake.
Neuro-Study at Stanford and muscle biopsy #2 done and healing.
Hard to know how much I have changed. I can see it in my calves, the atrophy is rampant, and the lack of balance and the lack of stamina.
I tried a gluten-free diet to see whether it would help for energy level and in fact it didn't do anything.
Back to eating more protein and sleeping more for energy preservation.
Neuro-Psych Eval: NO AUTISM ! Oh my gosh, we met the most amazing doctor yet. Unbelievable. she feels that Zoé is super smart in the way she navigates her world. How she sees it in such a way, it takes people years to do so. They pretended-play together and in every situation Zoé had one of her characters in a wheelchair, it is part of the woundedness, how she transcends it and accepts it the way it is for her.
I asked the doctor why Zoé never drew hands on the people she drew. Simple answer, because for Zoé, hands are difficult, the fine motor skills are not quite there yet, so why bother with the hands.
The doctor will come to our IEP and gave us practical ideas for Zoé to preserve energy. We'll discuss it with the team upon returning to school.
Graduating to 2nd grade we are proud of our champ who finished the year beautifully. The reading has picked up and so it is all good. We need to still practice, but I will be sure to take a lot of books with us to read, and the math games we do.
We are leaving for France on the 1st of July, it has been one year and way too long.
We cannot wait to have NO therapies, to sleep in, go to the beach, to see the cousins on the Swiss border and Italy with Daddy-O.
have a blissful summer and we'll see you back on the blog in the fall.
Monday, April 27, 2015
Accumulation, my Nemesis.
Have you ever felt like you wanted to scream, and no sound comes out of your mouth? You want to have a big cry and no tears are shed, you want to throw your ginormous pile of medical files on the floor and then in slow motion you see it but, nothing happens.
That's how I am feeling.
I get a $569.86 copay for Zoé's sleep study (the bill is only $8,521) and then, before I pay I request the results. Well, in this country (or perhaps it is the case everywhere), in order to know whether you are healthy or dying, you have to go through Medical Records, oh and they tell you how to access the paperwork to request for the results!!! on their website!!!!!
I am freaking out, there is no other word.
Sometimes, I wish it were one big nightmare, no this is not possible, this monster who came into our life. We live with it, we wake up with it and we got to bed with it. His name is Steinert, sounds better than the MMD acronym...Mr. Steinert, the effing (F&^%(*#), excuse my French , hahaha!, beast that came into our life like an insidious predator, to freak me out, to stress me out, and who relentlessly adds to my daily load, like one big truck coming full speed behind me, but the breaks are not working, you get the picture?
Sorry it is one of those mornings. The sun is bright and shining, and I need to do paperwork, pay bills, call for medical records, call for approvals from the insurance company, find the form I filed god knows where at midnight the night before...and then of course, after going through the pile, laying there, the prized paper with the diagnoses...ahhhh thank goodness.
No, but seriously, when is this going to end, or is there no end in sight?
Actually, I can answer my own rhetorical question. There is no answer, because there is no end.
Period!
hum.... I take a breather, but this one big thing, my newfound friend. I like to call her Accumulation, she drags you down, she has this way of going about your day, hiding into corners, and then she pops out just like that, like a Jack in the box, you know the broken toy, you try to stuff that Jack into the box, but just when you feel you have closed the lid, Pop! He shows up. That's my friend. Accumulation. I hate you! There, I said it, and Mr. Steinert, I despise you!
I feel good, I had to say it and now it's done. I can stop typing, post my entry and go back to my terrifying boring morning duties, but I will feel empowered when I go on the Medical records, website...
Have a good day! oh, and HAPPY Monday!
That's how I am feeling.
I get a $569.86 copay for Zoé's sleep study (the bill is only $8,521) and then, before I pay I request the results. Well, in this country (or perhaps it is the case everywhere), in order to know whether you are healthy or dying, you have to go through Medical Records, oh and they tell you how to access the paperwork to request for the results!!! on their website!!!!!
I am freaking out, there is no other word.
Sometimes, I wish it were one big nightmare, no this is not possible, this monster who came into our life. We live with it, we wake up with it and we got to bed with it. His name is Steinert, sounds better than the MMD acronym...Mr. Steinert, the effing (F&^%(*#), excuse my French , hahaha!, beast that came into our life like an insidious predator, to freak me out, to stress me out, and who relentlessly adds to my daily load, like one big truck coming full speed behind me, but the breaks are not working, you get the picture?
Sorry it is one of those mornings. The sun is bright and shining, and I need to do paperwork, pay bills, call for medical records, call for approvals from the insurance company, find the form I filed god knows where at midnight the night before...and then of course, after going through the pile, laying there, the prized paper with the diagnoses...ahhhh thank goodness.
No, but seriously, when is this going to end, or is there no end in sight?
Actually, I can answer my own rhetorical question. There is no answer, because there is no end.
Period!
hum.... I take a breather, but this one big thing, my newfound friend. I like to call her Accumulation, she drags you down, she has this way of going about your day, hiding into corners, and then she pops out just like that, like a Jack in the box, you know the broken toy, you try to stuff that Jack into the box, but just when you feel you have closed the lid, Pop! He shows up. That's my friend. Accumulation. I hate you! There, I said it, and Mr. Steinert, I despise you!
I feel good, I had to say it and now it's done. I can stop typing, post my entry and go back to my terrifying boring morning duties, but I will feel empowered when I go on the Medical records, website...
Have a good day! oh, and HAPPY Monday!
Thursday, April 16, 2015
Wake-up Call
Wake-up call, I fell asleep at te wheel.
How scary is that? Falling asleep at the wheel. I have to write it twice for it to sink in...
I have been driving Zoé around for the past 7 years. Ever since the first month of life, we've been running through Manhattan , from the West Side to the East Side, from Uptown to Downtown, from the Upper West side to Central Park South, from Piedmont to San Francisco, from Oakland to San Mateo, from the East Bay to Sacramento. And as far as Salt Lake City!
I just collapsed with fatigue.
Thank goodness I wasn't driving too fast, it was the exhaustion added to the heat, the AC and radio being off, both windows being open, that caused the narcolepsy to kick in.
One more checkmark on my Registry Form, where every year they assess the changes.
Last year, I was fine, this year, well, daytime sleepiness has increased dramatically. My favorite waiting rooms are those with comfy couches where I can doze off while Zoé is working. I fall asleep while in music therapy, lulled by the piano and the songs.
Physically, the legs are skinnier, the energy level has decreased, ziplock and bottles are nearly impossible to open. My neck is now in pain and I sleep with a heating pad at night, to alleviate the discomfort. But I try not to dwell on it, the show must go on.
I need to keep up for David and Zoé.
That being said, I have decided to QUIT one therapy session for Zoé. Communication Works, which at first was a good idea. It would enable Zoé to learn how to behave with peers, how to interact and learn to be more flexible, to help on the aspect of perspective taking....but clever Zoé found that CW was another arena for her to perform, playing a game, increasing the pretend play, where everyday she would come in and say: "I am in the red zone today" (Meaning angry, frustrated). I applaud the language usage, but I know very well that she didn't mean it and that it was all a game...
So that's that. No more back to back therapies on Wednesdays. Our last class is in 2 weeks and after that we can take a breather before hitting the road for horse therapy 30 minutes away (Which now takes me an hour).
For Zoé falls are recurrent and I monitor them daily, about 2 or 3.
I always need to hold her hand even though she wants to show her independence... I cherish these moments when we walk to school in the morning and laugh or talk about her day.
Reading is now quite good, not as fluent as it should be, but it is coming along.
Math skills need work and so we've set up a little system and progress chart with stickers and stars.
Voila for now dear readers. Zoé and I are heading out of town tomorrow, with our BFFs, for our bi-annual all girls road trip.
Staying at a resort overlooking the Pacific, with pool, jacuzzi, beach camp fire.
It will be so delightful to relax and enjoy each other's company.
I will be sure to post some pictures.
Until then, enjoy the gorgeous spring time wherever you are.
With fondness,
How scary is that? Falling asleep at the wheel. I have to write it twice for it to sink in...
I have been driving Zoé around for the past 7 years. Ever since the first month of life, we've been running through Manhattan , from the West Side to the East Side, from Uptown to Downtown, from the Upper West side to Central Park South, from Piedmont to San Francisco, from Oakland to San Mateo, from the East Bay to Sacramento. And as far as Salt Lake City!
I just collapsed with fatigue.
Thank goodness I wasn't driving too fast, it was the exhaustion added to the heat, the AC and radio being off, both windows being open, that caused the narcolepsy to kick in.
One more checkmark on my Registry Form, where every year they assess the changes.
Last year, I was fine, this year, well, daytime sleepiness has increased dramatically. My favorite waiting rooms are those with comfy couches where I can doze off while Zoé is working. I fall asleep while in music therapy, lulled by the piano and the songs.
Physically, the legs are skinnier, the energy level has decreased, ziplock and bottles are nearly impossible to open. My neck is now in pain and I sleep with a heating pad at night, to alleviate the discomfort. But I try not to dwell on it, the show must go on.
I need to keep up for David and Zoé.
That being said, I have decided to QUIT one therapy session for Zoé. Communication Works, which at first was a good idea. It would enable Zoé to learn how to behave with peers, how to interact and learn to be more flexible, to help on the aspect of perspective taking....but clever Zoé found that CW was another arena for her to perform, playing a game, increasing the pretend play, where everyday she would come in and say: "I am in the red zone today" (Meaning angry, frustrated). I applaud the language usage, but I know very well that she didn't mean it and that it was all a game...
So that's that. No more back to back therapies on Wednesdays. Our last class is in 2 weeks and after that we can take a breather before hitting the road for horse therapy 30 minutes away (Which now takes me an hour).
For Zoé falls are recurrent and I monitor them daily, about 2 or 3.
I always need to hold her hand even though she wants to show her independence... I cherish these moments when we walk to school in the morning and laugh or talk about her day.
Reading is now quite good, not as fluent as it should be, but it is coming along.
Math skills need work and so we've set up a little system and progress chart with stickers and stars.
Voila for now dear readers. Zoé and I are heading out of town tomorrow, with our BFFs, for our bi-annual all girls road trip.
Staying at a resort overlooking the Pacific, with pool, jacuzzi, beach camp fire.
It will be so delightful to relax and enjoy each other's company.
I will be sure to post some pictures.
Until then, enjoy the gorgeous spring time wherever you are.
With fondness,
Tuesday, February 10, 2015
Well, Hello 2015!
I am killing myself. My long overdue blog post just disappeared from the web. I don't even know where to start. So much has happened since Zoé 's 7th birthday.
What is in the works?
Cranio-facial clinic, waiting fro the sleep study scheduled for March 28th.
Bye bye SMO's Hello AFO's
Wedding in NYC, there and back
School back in session
Early morning teeth extraction (2 of them), $2 from the Tooth Fairy and thank you laughing gas!
I don't know where I was, I think I had started mentioning the self talking as a means for Zoé to self regulate. It is hard to address and when we are in a public places, I tend to remind Zoé that a conversation is between two people and that we should avoid the self-talk. Keep it in your "thought bubble". A dad I see regularly at our group session gave me the idea he uses with his son: "I have him write all his thoughts on a piece of paper, then throw it away."
I guess it would enable Zoé to free her mind of all these thoughts and it would perhaps enable her to jumpstart the "normalcy" of how one exchanges and talks with other people.
Reading Life Animated by Ron Suskind, whose autistic son can only communicate through Disney characters showcases the power of imagination.
Right now Zoé is into the Villains, any Disney villain, forget princesses and prince, we are all into Ursula the sea witch, Jafar the conniving magician, Cruella De Vil, the puppy killer monster and above all the Mean Queen who is betrayed by her mirror!
Speaking of villains, Zoé is now slowly enjoying movies, as opposed to animated ones.
Her all time favorite is Matilda the screen adaptation of Roal Dahl's novel where fantasy and dark humor bring to life this little girl who is emotionally and almost physically abandoned by her parents. Isn't it funny how kids just love to be scared, testing the boundaries where fear excites them and leaning to cope with their own defense mechanisms.
Upcoming appointment: ENT clinic at UC Davis to see how Zoé's high arched draping palate functions and how and why it impacts speech and breathing.
Like these second opinions...
The new concept we have been working on is how one can be a "we player" as opposed to a "me player". Zoé has a hard time being a "we" player, always wanting to control play dates, so I have to scaffold and come up with plans for the girls to play cooperatively. One board game then play school, one card game, then dress up or karaoke.
Social skills are still in the works and I need to prep Zoé before any social event. It is all about scaffolding and perspective taking. Putting oneself into other people's shoes...
The last birthday party was challenging. I had decided that I would leave Zoé there...oh well, she was so nervous, she feigned a stomach ache, then we went back and I told her I would stay 10 minutes, and she cried.
I decided that it was over, on the way home Zoé cried so much that we decided to go back and I stayed for the party.
I really need to let Zoé understand that she needs to mingle, to open up to others, to broaden her circle of friends...
Her best friends' sleepover birthday party is this coming weekend.
I will work with her on the one goal she has for the party: "I will play one game with a few new friends..." Understanding that her best friends have a lot of space in their heart for other friends."
The highlight of the month is that mom is coming from France. We haven't seen her in 7 months, it is way too long.
I am posting this post before it disappears on me...
Enjoy the pix!
Sending love and Valentine wishes to you and yours.
Cranio-facial clinic, waiting fro the sleep study scheduled for March 28th.
Bye bye SMO's Hello AFO's
Wedding in NYC, there and back
School back in session
Early morning teeth extraction (2 of them), $2 from the Tooth Fairy and thank you laughing gas!
I don't know where I was, I think I had started mentioning the self talking as a means for Zoé to self regulate. It is hard to address and when we are in a public places, I tend to remind Zoé that a conversation is between two people and that we should avoid the self-talk. Keep it in your "thought bubble". A dad I see regularly at our group session gave me the idea he uses with his son: "I have him write all his thoughts on a piece of paper, then throw it away."
I guess it would enable Zoé to free her mind of all these thoughts and it would perhaps enable her to jumpstart the "normalcy" of how one exchanges and talks with other people.
Reading Life Animated by Ron Suskind, whose autistic son can only communicate through Disney characters showcases the power of imagination.
Right now Zoé is into the Villains, any Disney villain, forget princesses and prince, we are all into Ursula the sea witch, Jafar the conniving magician, Cruella De Vil, the puppy killer monster and above all the Mean Queen who is betrayed by her mirror!
Speaking of villains, Zoé is now slowly enjoying movies, as opposed to animated ones.
Her all time favorite is Matilda the screen adaptation of Roal Dahl's novel where fantasy and dark humor bring to life this little girl who is emotionally and almost physically abandoned by her parents. Isn't it funny how kids just love to be scared, testing the boundaries where fear excites them and leaning to cope with their own defense mechanisms.
Upcoming appointment: ENT clinic at UC Davis to see how Zoé's high arched draping palate functions and how and why it impacts speech and breathing.
Like these second opinions...
The new concept we have been working on is how one can be a "we player" as opposed to a "me player". Zoé has a hard time being a "we" player, always wanting to control play dates, so I have to scaffold and come up with plans for the girls to play cooperatively. One board game then play school, one card game, then dress up or karaoke.
Social skills are still in the works and I need to prep Zoé before any social event. It is all about scaffolding and perspective taking. Putting oneself into other people's shoes...
The last birthday party was challenging. I had decided that I would leave Zoé there...oh well, she was so nervous, she feigned a stomach ache, then we went back and I told her I would stay 10 minutes, and she cried.
I decided that it was over, on the way home Zoé cried so much that we decided to go back and I stayed for the party.
I really need to let Zoé understand that she needs to mingle, to open up to others, to broaden her circle of friends...
Her best friends' sleepover birthday party is this coming weekend.
I will work with her on the one goal she has for the party: "I will play one game with a few new friends..." Understanding that her best friends have a lot of space in their heart for other friends."
The highlight of the month is that mom is coming from France. We haven't seen her in 7 months, it is way too long.
I am posting this post before it disappears on me...
Enjoy the pix!
Sending love and Valentine wishes to you and yours.
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| NYC weather and the gear |
 |
| On our way to the wedding |
 |
| The bow queen |
 |
| I love M&Ms |
 |
| That's my new horse |
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