Hi All,
Friday was an eventful day for Zoé.
We went to Shriners Hospital in the morning and saw a doctor who fitted her for her new night splints. (Braces that put her feet at 90, that she has to wear all night. We are alternating feet at the moment to slowly ease them onto Zoé’s feet). Medieval contraption is what I call them, but hopefully they'll help prevent more falls. We want to keep Zoé from getting too tight in her calves...
In the afternoon we saw Dr. Leigh at The Mind Institute, who gave us the new diagnoses for:
Mild Autism (regarding the social component, autism associated with Steinert with no intellectual impairment, but speech related) and ADHD (lack of focus in the classroom and hyperactivity at home).
She did give us some good strategies to help Zoé.
For the classroom:
We were asked to place Zoé right in front of Ms. E (Her teacher) , if possible, so that she can focus on what is being said.
Offer some breaks so Zoé can regroup if she starts losing focus, breaks that can be part of her daily routine.
Keep working on social communication (Lunch bunch and Communication Works)
She gave us a prescription for adaptive behavioral programs.
Giving Zoé a visual schedule so she can anticipate on class activities.
Making rules easy and clear.
Simplifying directions and breaking down tasks.
Dr. Leigh also wants the school psychologist to evaluate Zoé for possible learning disability (Related to the reading component)
At home we are now really working on scheduling her days with a visual schedule on a white board in her room.
We know that Zoé is somewhat over scheduled. It turns out Choir was not a good fit for her, it was too late in the day (from 4 to 5:30 pm) and they didn’t offer any help to include her in the program. It was also too rigid.
It was hurtful to be let down by a choir setting where no accommodations were provided for an all inclusive environment.
"There are too many interruptions on your daughter's part, she needs to go drink water, she needs toilet breaks..." is what I was told.
Well, hello, she is 6 years old, with a neuromuscular disease, has ADHD and mild autism, and she is expected to sit there and politely wait for an hour before she can take a break....
It was really bittersweet, but in the end, I decided that if Zoé wasn't going to be accepted, so be it.
The funny thing is that it didn't phase her, nothing really does...That's the resilient side, the innate sense of not letting things get to you, or the autism...whatever.
Zoé really lacks stamina and over scheduling her will be detrimental in the end. So it is a matter of keeping that in mind and choosing activities that are comforting and soothing for her little body, and her black and blue knees.
I guess, this is it in a nutshell. Hopefully we can add these diagnoses to her IEP in order to discuss what strategies we can implement at school and in the classroom to help Zoé.
I should fill you in on what happened at the National Muscular Dystrophy Foundation meeting in Washington DC. It was truly amazing!
Unreal to see so many people with the same diagnosis, who understand where you are coming from, and also feeling empowered by the many advocates.
I was on a panel discussing the benefits of Horse Therapy for kids and adults who suffer from MMD-Type 1.
We went to the senate to give out awards to the many amazing doctors dedicated in finding a cure.
From Scotland to Rochester, from Stanford to MIT people are committed in researching and trying to find a cure for this devastating disease.
I met families that have suffered losses:"my wife got pneumonia and didn't have the muscles to cough, my nephew choked to death, my son is 35 and feels lost and out of touch.." and yet, it felt comforting to know that we were all in it together. It takes a village...
I felt elated and proud and on the flight back in was a huge-podge of emotions, the realization that , well, I have this disease, my Zoé is afflicted, it impacts David and that despite the odds we have to try our best to play with the cards we were dealt.
Friday was an eventful day for Zoé.
We went to Shriners Hospital in the morning and saw a doctor who fitted her for her new night splints. (Braces that put her feet at 90, that she has to wear all night. We are alternating feet at the moment to slowly ease them onto Zoé’s feet). Medieval contraption is what I call them, but hopefully they'll help prevent more falls. We want to keep Zoé from getting too tight in her calves...
In the afternoon we saw Dr. Leigh at The Mind Institute, who gave us the new diagnoses for:
Mild Autism (regarding the social component, autism associated with Steinert with no intellectual impairment, but speech related) and ADHD (lack of focus in the classroom and hyperactivity at home).
She did give us some good strategies to help Zoé.
For the classroom:
We were asked to place Zoé right in front of Ms. E (Her teacher) , if possible, so that she can focus on what is being said.
Offer some breaks so Zoé can regroup if she starts losing focus, breaks that can be part of her daily routine.
Keep working on social communication (Lunch bunch and Communication Works)
She gave us a prescription for adaptive behavioral programs.
Giving Zoé a visual schedule so she can anticipate on class activities.
Making rules easy and clear.
Simplifying directions and breaking down tasks.
Dr. Leigh also wants the school psychologist to evaluate Zoé for possible learning disability (Related to the reading component)
At home we are now really working on scheduling her days with a visual schedule on a white board in her room.
We know that Zoé is somewhat over scheduled. It turns out Choir was not a good fit for her, it was too late in the day (from 4 to 5:30 pm) and they didn’t offer any help to include her in the program. It was also too rigid.
It was hurtful to be let down by a choir setting where no accommodations were provided for an all inclusive environment.
"There are too many interruptions on your daughter's part, she needs to go drink water, she needs toilet breaks..." is what I was told.
Well, hello, she is 6 years old, with a neuromuscular disease, has ADHD and mild autism, and she is expected to sit there and politely wait for an hour before she can take a break....
It was really bittersweet, but in the end, I decided that if Zoé wasn't going to be accepted, so be it.
The funny thing is that it didn't phase her, nothing really does...That's the resilient side, the innate sense of not letting things get to you, or the autism...whatever.
Zoé really lacks stamina and over scheduling her will be detrimental in the end. So it is a matter of keeping that in mind and choosing activities that are comforting and soothing for her little body, and her black and blue knees.
I guess, this is it in a nutshell. Hopefully we can add these diagnoses to her IEP in order to discuss what strategies we can implement at school and in the classroom to help Zoé.
I should fill you in on what happened at the National Muscular Dystrophy Foundation meeting in Washington DC. It was truly amazing!
Unreal to see so many people with the same diagnosis, who understand where you are coming from, and also feeling empowered by the many advocates.
I was on a panel discussing the benefits of Horse Therapy for kids and adults who suffer from MMD-Type 1.
We went to the senate to give out awards to the many amazing doctors dedicated in finding a cure.
From Scotland to Rochester, from Stanford to MIT people are committed in researching and trying to find a cure for this devastating disease.
I met families that have suffered losses:"my wife got pneumonia and didn't have the muscles to cough, my nephew choked to death, my son is 35 and feels lost and out of touch.." and yet, it felt comforting to know that we were all in it together. It takes a village...
I felt elated and proud and on the flight back in was a huge-podge of emotions, the realization that , well, I have this disease, my Zoé is afflicted, it impacts David and that despite the odds we have to try our best to play with the cards we were dealt.
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| Award Ceremony at The Senate |
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| Letter to advocate sent to the California Senators (Feinstein and Boxer) |
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| Music Therapy. |
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| Trying out instruments |
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| Like my Shades? |
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| The book about ME |
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| Rainbow swing. Works muscles to go from one color to the next. |
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| Proud Mama |
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