September 5, 2012:
(an excerpt from my blog post that day)
"Our
first grader is not the same as other parent's first graders. Instead
of expecting him to write his first and last name correctly, we will be
proud of him for drawing his 'H'. Instead of expecting him to read a new
book, we will be proud of him for visually identifying more and more
new names and other words. Instead of expecting him to make progress
with complex math assignments, we will be proud of his improved counting
skills. Instead of expecting him to paint a masterpiece in art class, I
will be proud of him when he completes a craft.
I will never need an honor roll bumper sticker on my truck for anyone to know just how much I believe in my son.
He is our first grader. And our expectations are that we will have another school year of being proud of him."
-----
Overall September was a good month. This is usually the case, and the teacher's often joke that with the start of every new school year Hayden goes through a honeymoon phase.
Almost as if on cue, October began and the honeymoon concluded. The weekend of October 13th we finally had everything in place to begin a treatment regimen.
( see original post http://awarenexs.blogspot.com/2012/10/the-patch.html )
In general, Hayden was very hyper-aware of the patch being on his skin & we only had intermittent success. In addition we had other struggles. Near the end of the month, the disruption to his routine as a result of Hurricane Sandy definitely had a lingering effect on him. We were weeks into November by the time Hayden finally, slowly stopped talking about power outages, generators, trees falling, & the like.
By the end of November he started to have more consecutive good days at school again. But it didn't quite last and December was filled with more fluctuating behaviors. We did have a behaviorist consulting with us on a regular basis, but Hayden's compliance was inconsistent.
Just before Winter recess, we had an appointment with a new Developmental Pediatrician. Her recommendation was to increase his dosage 5mg more. This means a larger patch = easier access for Hayden to reach and peel off + a larger area of skin irritation (especially considering it does not go in the same spot twice). We also scheduled a team meeting and this proved to be crucial in terms of putting a plan in place beginning in January: attempting a more consistent continuation of the original prescribed patch (before considering filling the new, stronger script).
Well the school nurse has been applying Hayden's patch daily and contrary to our trial runs during the last couple months of 2012... we are finally seeing concrete signs of progress.
I feel like this is the blog post that has been one year, ten months, and seven days in the making...
-----
Here is some recent feedback from school. The exclamation points, capital letters, underlines, and smiley faces are accurately included in these excerpts:
January 2, 2013:
(Parent-Teacher Journal)
"H had an awesome day! Did awesome reading & remembering his words. Sat great in the lunchroom. Had indoor recess, worked on floor puzzle & cleaned up right away when told! AWESOME! Overall wonderful day!!"
(Home-School Communication Book, note from PT:)
"Hayden used the 2 swings in PT, did a lot of weight bearing thru his shoulders & arms while putting bean bags in. More organized. Better cooperation. He also used the tricycle for longer distances."
January 3, 2013:
(Parent-Teacher Journal)
"Another great day! He had a little trouble in gym, but the length of time being upset has shortened considerably & he is able to regain control. Sent home some work from today. He was so on the ball. Very proud of him! Played Legos with classmates during indoor recess!"
January 4, 2013:
(Parent-Teacher Journal)
"Another AWESOME day! He did great in music & followed directions beautifully all day."
(Home-School Communication Book, note from ST:)
"...what a great week I have had with Hayden. He was very focused & easily tolerated redirection. At the end of speech today he said, 'Thanks, I appreciated it' :)"
January 7, 2013:
(Parent-Teacher Journal)
"H had a good day! A little non-compliant during reading, but did great during gym!"
January 8, 2013:
(Parent-Teacher Journal)
"Another great day! Did great seat work & did his best with the small reading booklet. He was so proud of himself! He had library & did awesome! :)"
January 9, 2013:
(Parent-Teacher Journal)
"Overall a good day! Had some trouble during a task, but took a 5 min silent/ calming break & then was able to get right back to work. We did penguin footprint-art today!"
January 10, 2013:
(Parent-Teacher Journal)
"H had an awesome day! Did great @ music & gym. We painted a brown walrus. He had a great time!"
(Home-School Communication Book, note from OT:)
"Hayden practiced cutting, coloring, making H's! He earned the Tool Man Tool Box! WOO HOO! He was awesome!"
...and for the grand finale, excerpts from the official 2nd quarter Progress Report:
"Hayden continues to progress with Reading Rocks. He is independently answering & completing worksheets more frequently.... We have started working with money & pretending to shop at the store. Hayden really enjoys this.... Hayden continues to do a great job with his daily job, of getting mail & delivering mail.... While we are seeing some difficult behaviors... we are continuing to work through it positively.... Recently he has made great behavioral improvement.... Keep up the great work!"
-----
At 17 months of age our son Hayden was diagnosed with Fragile X. His birth certificate will tell you he is now 7 1/2 years old, but his development is many years younger. Still he is a very social, charismatic, likable, lovable, funny, motivated, smart, and physically healthy child... he is arguably one of the happiest kids a person could meet. He loves to play, to interact with others, and he easily finds his way into the hearts of nearly everyone who has the opportunity to get to know him. Hayden is our son who is able to love life AND LEARN and it shows in everything he does.
Our first grader is certainly not the same as other parent's first graders. And I am surprisingly grateful for this, because otherwise I fear I might not continue to be in such complete awe of him... and everything he accomplishes.
Clouds, May 2010
Thursday, January 10, 2013
Monday, January 7, 2013
you're invited
I have never had much interest in dying my hair. 37 years later, it's the same shade of brown that I was born with. Granted in natural sunlight it has a little bit of auburn goin' on, but basically I am just brunette. However no one ever looks at me seemingly thinking, "Is that color enough for her? She should try highlights. It would make her feel good."
I know that look because I have seen it from people who know us, but do not know us. Newsflash: if you look at my child differently, so will your own children.
This type of shallow judgement pisses me off as much as people who can't seem to offer their own view, without insulting the opposition. Such as, "I hate brown hair. I don't understand anyone who can live with brown hair. People with brown hair are clueless." Versus simply saying, "I love red hair & I think it's a beautiful color. People with red hair are very smart!" Because if you only communicated the latter, I would say I agree... I would tell you my sister has beautiful red hair & she is one of the most intelligent people I know.
But instead, if you unnecessarily insult a different hair color then I don't give a rats ass what your opinion is... because you're putting me on the defensive instead of just inviting me to appreciate your view.
-----
I do not know where the following words were first published, or when they were written, but I do know why. I have seen several variations, many giving credit to one Erma Bombeck. Despite the differences between the republications, or how the precise version of the original goes, they are still beautiful & poetic & an incredibly worthy reminder.
The writing begins with a question: Did you ever wonder how parents of children with special needs are chosen?
Considering the idea on a spiritual level there is a quote, a thoughtful conversation if you will, between G-d & an angel. They are speaking of a woman who is to become a new mom.
G-d tells the angel that the child He is going to give this new mom has his own world, & that it's not going to be easy. The angel gasps when G-d says this woman has enough selfishness, because the angel doesn't understand how this is a virtue. G-d nods & says the mother needs to occasionally separate herself from the child or she will never survive.
"Yes," He continues, "here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she will be envied. She will never consider a step ordinary... when her child says 'mommy' for the first time she will be in the presence of a miracle & she will know it... she will see my creations as few people ever see them. I will permit her to clearly see ignorance, cruelty, & prejudice... but allow her to rise above them. She will never be alone, because in order for her to continue my work I will be at her side every minute of every day of her life."
Then the angel asks G-d, "What about her patron saint?"
G-d smiles, "a mirror will suffice."
-----
People within the fragile x community have shared an equally profound perspective offered by Dr. Marcia Braden.
Dr. Braden is a psychologist & also a member of the Scientific & Clinical Advisory Board to the National Fragile X Foundation. She is well-known throughout the community of people affected by autism & other related disorders.
She is often quoted for her carrier perspective... referring to moms with this unique X who are called carriers, because they carry a specific gene they pass on to their children.
But she calls them carriers because "...they carry all the hopes and dreams possible for their children. They carry their fears, anxiety, struggles, defeat, and pain. They are capable of carrying the joy of success and the disappointment of developmental delays all at the same time. They carry a favorite toy, an old picture, or funny cap that brings comfort and security wherever they go. They carry mental ammunition to their school placement staffings and strategies for treatment. They carry the strength to defy all odds and march on with fortified courage and unconditional love."
-----
The reality is we all know it's not G-d, or angels, or parents who ever see children as imperfect. Nor is it because of science that these carrier moms feel all of this weight. They may have moments when they think they are carrying their fears, but the truth is they are carrying fears caused by society and it has very little to do with the gene itself.
Although we know the fragile x gene causes a wealth of challenges... & by the way, may I use the word wealth? Because after all, isn't it? Perhaps a wealth of knowledge. A wealth of understanding. And on some days a wealth of inspiration vs other days which carry a wealth of hope.
Yes we know this gene causes challenges for the child & the people around them. But the fear... we are not "afraid" of global developmental delays, are we? We are not afraid of fine motor delays, or gross motor delays, or toileting delays. We are not afraid of sensory processing disorder or speech apraxia. We are not afraid of hypotonia (low muscle tone)or hyperactivity.
But we are afraid of what happens when society sees all of these challenges in one human being, & doesn't know what to make of them. When people do not know what fragile x is. Or when, saddest of all, people do not know how to embrace this.
I invite you to memorize 3 points:
1. Never use the word "retarded". Period.
2. If you find yourself witnessing someone having a sudden, difficult situation with their child (for example, a meltdown)... do not get involved. Do not stare. Do not make suggestions. If we need help, we will ask for it.
3. If you are a parent, treat your own child(ren) with respect by taking the time to properly explain something unfamiliar to them. Encourage them to ask questions so they do not make incorrect assumptions.
Maybe you already recognize these ideas in everyday life and if so, then you are likely one of the angels among us. Know that any parent of a child with special needs would carry few fears, if society as a whole made an effort to understand differences the way we do.
If we define patron saints as chosen protectors over certain areas of life, then perhaps it's true we (parents of children with special needs) are patron saints. Even Jewish moms like me.
Therefore as brunette Patron Saint of Hayden I formally invite you to diminish my fears. I love my brown hair & I love my son. You have an invitation to love him, too. It's up to you to accept it.
I know that look because I have seen it from people who know us, but do not know us. Newsflash: if you look at my child differently, so will your own children.
This type of shallow judgement pisses me off as much as people who can't seem to offer their own view, without insulting the opposition. Such as, "I hate brown hair. I don't understand anyone who can live with brown hair. People with brown hair are clueless." Versus simply saying, "I love red hair & I think it's a beautiful color. People with red hair are very smart!" Because if you only communicated the latter, I would say I agree... I would tell you my sister has beautiful red hair & she is one of the most intelligent people I know.
But instead, if you unnecessarily insult a different hair color then I don't give a rats ass what your opinion is... because you're putting me on the defensive instead of just inviting me to appreciate your view.
-----
I do not know where the following words were first published, or when they were written, but I do know why. I have seen several variations, many giving credit to one Erma Bombeck. Despite the differences between the republications, or how the precise version of the original goes, they are still beautiful & poetic & an incredibly worthy reminder.
The writing begins with a question: Did you ever wonder how parents of children with special needs are chosen?
Considering the idea on a spiritual level there is a quote, a thoughtful conversation if you will, between G-d & an angel. They are speaking of a woman who is to become a new mom.
G-d tells the angel that the child He is going to give this new mom has his own world, & that it's not going to be easy. The angel gasps when G-d says this woman has enough selfishness, because the angel doesn't understand how this is a virtue. G-d nods & says the mother needs to occasionally separate herself from the child or she will never survive.
"Yes," He continues, "here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she will be envied. She will never consider a step ordinary... when her child says 'mommy' for the first time she will be in the presence of a miracle & she will know it... she will see my creations as few people ever see them. I will permit her to clearly see ignorance, cruelty, & prejudice... but allow her to rise above them. She will never be alone, because in order for her to continue my work I will be at her side every minute of every day of her life."
Then the angel asks G-d, "What about her patron saint?"
G-d smiles, "a mirror will suffice."
-----
People within the fragile x community have shared an equally profound perspective offered by Dr. Marcia Braden.
Dr. Braden is a psychologist & also a member of the Scientific & Clinical Advisory Board to the National Fragile X Foundation. She is well-known throughout the community of people affected by autism & other related disorders.
She is often quoted for her carrier perspective... referring to moms with this unique X who are called carriers, because they carry a specific gene they pass on to their children.
But she calls them carriers because "...they carry all the hopes and dreams possible for their children. They carry their fears, anxiety, struggles, defeat, and pain. They are capable of carrying the joy of success and the disappointment of developmental delays all at the same time. They carry a favorite toy, an old picture, or funny cap that brings comfort and security wherever they go. They carry mental ammunition to their school placement staffings and strategies for treatment. They carry the strength to defy all odds and march on with fortified courage and unconditional love."
-----
The reality is we all know it's not G-d, or angels, or parents who ever see children as imperfect. Nor is it because of science that these carrier moms feel all of this weight. They may have moments when they think they are carrying their fears, but the truth is they are carrying fears caused by society and it has very little to do with the gene itself.
Although we know the fragile x gene causes a wealth of challenges... & by the way, may I use the word wealth? Because after all, isn't it? Perhaps a wealth of knowledge. A wealth of understanding. And on some days a wealth of inspiration vs other days which carry a wealth of hope.
Yes we know this gene causes challenges for the child & the people around them. But the fear... we are not "afraid" of global developmental delays, are we? We are not afraid of fine motor delays, or gross motor delays, or toileting delays. We are not afraid of sensory processing disorder or speech apraxia. We are not afraid of hypotonia (low muscle tone)or hyperactivity.
But we are afraid of what happens when society sees all of these challenges in one human being, & doesn't know what to make of them. When people do not know what fragile x is. Or when, saddest of all, people do not know how to embrace this.
I invite you to memorize 3 points:
1. Never use the word "retarded". Period.
2. If you find yourself witnessing someone having a sudden, difficult situation with their child (for example, a meltdown)... do not get involved. Do not stare. Do not make suggestions. If we need help, we will ask for it.
3. If you are a parent, treat your own child(ren) with respect by taking the time to properly explain something unfamiliar to them. Encourage them to ask questions so they do not make incorrect assumptions.
Maybe you already recognize these ideas in everyday life and if so, then you are likely one of the angels among us. Know that any parent of a child with special needs would carry few fears, if society as a whole made an effort to understand differences the way we do.
If we define patron saints as chosen protectors over certain areas of life, then perhaps it's true we (parents of children with special needs) are patron saints. Even Jewish moms like me.
Therefore as brunette Patron Saint of Hayden I formally invite you to diminish my fears. I love my brown hair & I love my son. You have an invitation to love him, too. It's up to you to accept it.
Wednesday, January 2, 2013
a holiday letter to H's Principal
Today was the day that most children in most school districts returned to their classrooms. For the majority of students, this is the day that school resumed post- Winter Break. For students from Sandy Hook, tomorrow marks the day that classes resume in a different school, post-tragedy.
Just prior to Winter Break, I was gathering the very large number of gifts for various people who work with Hayden & signing a seemingly endless number of holiday cards. I am always afraid I am going to forget someone, so I start from the beginning of his day & attempt to think of everyone we want to say 'thank you' to. There's the van driver, his Aide, the Aide who is with him when his regular Aide is on lunch break, his special ed teacher, his regular ed teacher, his therapists... the list goes on. In my mind I sort of think about the layout of the school, & go hallway-by-hallway to make sure I am not forgetting anyone. I even asked one of the teachers to help me with a list. It really does take a village!
Hayden is only in 1st grade but this marks his FIFTH year at that school, including summer program. For three years he attended the (awfully named, yet awesome) Preschool Disabilities Program which has since been moved to a different school-- but he attended the program from age 3 through 5. At age 6 he was in Kindergarten, & now at age 7 he is in 1st grade. This is the same length of time that most typical children have entered the school & graduated to the next one.
So anyway when I got down the list to the Principal (or should I say the top of the list?), I decided I really just want to thank him. I thought about bringing in a really nice plant, or sending one of those edible fruit arrangements to the front office... but with the tragedy in Connecticut still being so raw, & for most of us our emotions as well, sending a physical gift didn't seem to suffice.
Therefore I sat down to thank him. Once I began writing I was only interrupted by my eyes welling up, but otherwise I plowed through this holiday letter to H's Principal like something that felt truly five years overdue:
"Good Afternoon Mr. M,
Happiest Holidays to you and your family, and we hope this message finds you
well. Dan and I just wanted to take this opportunity to express our
gratitude for your continued support. I know we stopped in for a moment
during an evening of parent-teacher conferences, but I wanted to communicate
our sentiments in writing as well. And again as far as that incredible
faculty workshop back in September to introduce anyone who had not yet
worked directly with Hayden, to fragile x, and the opportunity I had the
following month to go in and speak with the first grade class... these are
the types of efforts which will allow a mutual benefit for Hayden, his
current and future educators, and his peers. This is precisely the precedent
we want to set, and here at Grade One we have provided that necessary
platform of open communication.
We appreciate your willingness to listen over the years and working with us
to address concerns when need be, as well as accepting our overall
participation in Hayden's education. As you know we continue to maintain
involvement within the fragile x community as well, and every year our
journey is about moving towards the best possible treatments for Hayden--
whether one year involves a school visit from a specialist, or another year
a cross-country trip to a clinic, or a week at an international conference,
or advocating on Capitol Hill, and even within the very school district. We
make every effort to keep everyone informed and ensure the school has the
latest reports, the most up-to-date evaluations, and so forth.
But it takes more than determined, dedicated parents to refine what is best
for a child. Their education requires many minds coming together-- not just
two minds-- to explore and discuss options. The staff within FMB
have always been extremely receptive. My favorite part is when we have
a visit with one of these doctors-- whether they only specialize in fragile
x or not-- and they are not just pleasantly surprised but nearly floored
over the education plan in place for Hayden. These are among our proud
opportunities to sit up straight... and brag. We've heard comments such as
the people at FMB renewing one's faith in education, we've had specialists
ask us if Hayden is in private school, and most recently a developmentalist
we took him to actually applauded the behavioral plan... I mean she
literally clapped for a few seconds and said, "you have no idea how many
districts fail to see the importance of this." Well, not ours, I thought.
In the extremely difficult wake of this unthinkable tragedy in Connecticut,
our eyes were all forced wide open to the crucial importance of ongoing
safety measures... around the nation, and certainly within our own tri-state
area. For me it felt even more eerily close to home when I learned my
supervisor's youngest niece is a survivor. She is about the same age as
Hayden, and is a first grade student at Sandy Hook. Her niece was two
classrooms over from the room the shooter was in, when he took his own life.
She walked with her eyes closed as her teacher led the class out of the
school, but would later learn she lost nine friends that day.
The first glimpse I saw of this tragedy was on the news as I stopped home,
just before heading to FMB for Hayden's team meeting that Friday. The town
name "Newtown" flashed across the screen and at first glance I didn't see
that second "w"... even if I had, I certainly didn't realize it was in
Connecticut. It's difficult to attempt to put into words the conflict of
emotions between the sheer horror of the incident, and the undeniable
(albeit guilty) relief that it's not your own child's school.
It's not uncommon for a parent of a child with special needs to have
different worries than other parents, and more long-term safety concerns. We
have heard some horror stories over the years involving non-verbal students,
or so-called professionals trusted with children whom they shouldn't have
been anywhere near. We hear about these stories in the media and an
occasional shred of comfort may emerge, when there are new laws in place as
a result.
None of us can put a guarantee on everyone's safety and happiness all of the
time. But for the overwhelming majority, thanks to you and your incredible
staff Dan and I rest assured that our little determined warrior is already
in the hands of heroes.
We wish you a blessed holiday, and we thank you.
The Capela Family"
He did send me a very brief but kind reply, pointing out that they don't always hear the positives... so it was that much more appreciated.
Well I can empathize, Mr. M-- because your staff truly warms my heart on a regular basis & that is precisely why I wanted to tell you this.
*Happy New Year, Everyone*
Just prior to Winter Break, I was gathering the very large number of gifts for various people who work with Hayden & signing a seemingly endless number of holiday cards. I am always afraid I am going to forget someone, so I start from the beginning of his day & attempt to think of everyone we want to say 'thank you' to. There's the van driver, his Aide, the Aide who is with him when his regular Aide is on lunch break, his special ed teacher, his regular ed teacher, his therapists... the list goes on. In my mind I sort of think about the layout of the school, & go hallway-by-hallway to make sure I am not forgetting anyone. I even asked one of the teachers to help me with a list. It really does take a village!
Hayden is only in 1st grade but this marks his FIFTH year at that school, including summer program. For three years he attended the (awfully named, yet awesome) Preschool Disabilities Program which has since been moved to a different school-- but he attended the program from age 3 through 5. At age 6 he was in Kindergarten, & now at age 7 he is in 1st grade. This is the same length of time that most typical children have entered the school & graduated to the next one.
So anyway when I got down the list to the Principal (or should I say the top of the list?), I decided I really just want to thank him. I thought about bringing in a really nice plant, or sending one of those edible fruit arrangements to the front office... but with the tragedy in Connecticut still being so raw, & for most of us our emotions as well, sending a physical gift didn't seem to suffice.
Therefore I sat down to thank him. Once I began writing I was only interrupted by my eyes welling up, but otherwise I plowed through this holiday letter to H's Principal like something that felt truly five years overdue:
"Good Afternoon Mr. M,
Happiest Holidays to you and your family, and we hope this message finds you
well. Dan and I just wanted to take this opportunity to express our
gratitude for your continued support. I know we stopped in for a moment
during an evening of parent-teacher conferences, but I wanted to communicate
our sentiments in writing as well. And again as far as that incredible
faculty workshop back in September to introduce anyone who had not yet
worked directly with Hayden, to fragile x, and the opportunity I had the
following month to go in and speak with the first grade class... these are
the types of efforts which will allow a mutual benefit for Hayden, his
current and future educators, and his peers. This is precisely the precedent
we want to set, and here at Grade One we have provided that necessary
platform of open communication.
We appreciate your willingness to listen over the years and working with us
to address concerns when need be, as well as accepting our overall
participation in Hayden's education. As you know we continue to maintain
involvement within the fragile x community as well, and every year our
journey is about moving towards the best possible treatments for Hayden--
whether one year involves a school visit from a specialist, or another year
a cross-country trip to a clinic, or a week at an international conference,
or advocating on Capitol Hill, and even within the very school district. We
make every effort to keep everyone informed and ensure the school has the
latest reports, the most up-to-date evaluations, and so forth.
But it takes more than determined, dedicated parents to refine what is best
for a child. Their education requires many minds coming together-- not just
two minds-- to explore and discuss options. The staff within FMB
have always been extremely receptive. My favorite part is when we have
a visit with one of these doctors-- whether they only specialize in fragile
x or not-- and they are not just pleasantly surprised but nearly floored
over the education plan in place for Hayden. These are among our proud
opportunities to sit up straight... and brag. We've heard comments such as
the people at FMB renewing one's faith in education, we've had specialists
ask us if Hayden is in private school, and most recently a developmentalist
we took him to actually applauded the behavioral plan... I mean she
literally clapped for a few seconds and said, "you have no idea how many
districts fail to see the importance of this." Well, not ours, I thought.
In the extremely difficult wake of this unthinkable tragedy in Connecticut,
our eyes were all forced wide open to the crucial importance of ongoing
safety measures... around the nation, and certainly within our own tri-state
area. For me it felt even more eerily close to home when I learned my
supervisor's youngest niece is a survivor. She is about the same age as
Hayden, and is a first grade student at Sandy Hook. Her niece was two
classrooms over from the room the shooter was in, when he took his own life.
She walked with her eyes closed as her teacher led the class out of the
school, but would later learn she lost nine friends that day.
The first glimpse I saw of this tragedy was on the news as I stopped home,
just before heading to FMB for Hayden's team meeting that Friday. The town
name "Newtown" flashed across the screen and at first glance I didn't see
that second "w"... even if I had, I certainly didn't realize it was in
Connecticut. It's difficult to attempt to put into words the conflict of
emotions between the sheer horror of the incident, and the undeniable
(albeit guilty) relief that it's not your own child's school.
It's not uncommon for a parent of a child with special needs to have
different worries than other parents, and more long-term safety concerns. We
have heard some horror stories over the years involving non-verbal students,
or so-called professionals trusted with children whom they shouldn't have
been anywhere near. We hear about these stories in the media and an
occasional shred of comfort may emerge, when there are new laws in place as
a result.
None of us can put a guarantee on everyone's safety and happiness all of the
time. But for the overwhelming majority, thanks to you and your incredible
staff Dan and I rest assured that our little determined warrior is already
in the hands of heroes.
We wish you a blessed holiday, and we thank you.
The Capela Family"
He did send me a very brief but kind reply, pointing out that they don't always hear the positives... so it was that much more appreciated.
Well I can empathize, Mr. M-- because your staff truly warms my heart on a regular basis & that is precisely why I wanted to tell you this.
*Happy New Year, Everyone*
Monday, December 17, 2012
we need to talk
It was one of the first few days of December when I happened to watch Lynne Ramsay's 2011 drama We Need to Talk About Kevin, based on the novel by Lionel Shriver, starring Tilda Swinton & John C. Reilly (as Kevin's parents).
I'm eerily in disbelief that I happened to see this movie & less than two weeks later an unthinkable horror occurred at Sandy Hook Elementary School.
(By the way, people of the web, it's not Sandy Brook Elementary, or Sandy Creek Elementary... it's Sandy Hook. And it's not Newton. It's Newtown.
A big difference one letter can make because I will tell you at first glance, when I saw that on TV, it felt as if my heart was going to beat right outside of my chest... my eyes did not catch that second "w"... & with the address of my son's school being "Newton"... I was frozen. My father happened to be driving some place, was also mistaken at first when he heard it on the radio, & nearly swung his car around to head up here. Until we each realized it was Connecticut, even if only a moment later, it was enough to be terrified on top of horrified)
---
The film I'm referring to unfolds from the mother's perspective, about her son who she suspects there is something very wrong with. As a toddler, in response to her vague concerns, the pediatrician tells her that Kevin is absolutely fine. Still the viewer is confused as Kevin displays a complete, deliberate dislike towards her & is downright nasty. But Kevin is also careful about when he acts towards his mother this way, & is subtle about doing so in the presence of his father. By the time Kevin is a young kid, not much has changed & the husband only reassures his wife that all children develop at a different pace... & that incidents X, Y, & Z were just accidents.
We know at the beginning of the film that it's picking up after something terribly awful has already happened, because this is evident based on all aspects of the mother's very sad life. But as the whole story is slowly revealed through flashbacks, I was already heartbroken & frightened before the movie was anywhere near its climactic, gruesome finale.
I don't even remember adding this damn movie to my Netflix queue. (Same thing happened last week when some lame-ass Hunger Games documentary arrived in our mailbox & I have zero recollection of clicking on such a thing.)
I wish I never saw this We Need to Talk About Kevin, & I do not recommend it... especially now... in the wake of everything... it would be entirely, entirely too difficult to remember it's a fictional story. I actually wish Netflix would at least temporarily mark it as unavailable or something.
Even last night I was a little bit emotional over the thought of sending H to school today. And then when he safely arrived home this afternoon, I tried to shield my overwhelming sense of relief from the van driver because I didn't want to her think I'm a weirdo.
At one point late this afternoon, the school sent out a friggin instant alert stating to check the district site for a message from the superintendent. That's the same thing as saying, "We have something urgent to tell you but go to your computer to find out what it is." I thought gee that's not unsettling or anything.
It was basically a generic memo about the safety protocols in place & so forth, but the timing of the announcement was hardly comforting. They should have released the notification later in the day after most kids were already home. In the wake of everything it was momentarily nerve-wrecking to get this random alert without any upcoming school event or snow falling outside.
So after Hayden arrived home I went through his backpack as I always do... I emptied any uneaten food, cleaned the papers out of the folders, & checked the communication journals. They reported another tough day today.
Going back the last 25 journal entries, 9 of them begin with "H had a tough time today". Four of those tough days involved a lunch room incident.
You see, for a child with fragile x that actually makes sense... a lunch room is busy, it's loud, it's smelly, it's loud, you sit unsupported on a bench, & ... oh, yeah... it's loud.
But H has been eating lunch in that very same setting for years. This has never been an issue. However, during recent weeks it seems as though everything is an issue.
I sort of understood his challenging behavior near the end of November... when everything in the wake of Hurricane Sandy was probably just catching up with him. Kids with fx are globally, developmentally delayed & in general that may include a delay in processing something unfamiliar. This wasn't just an 8-day power outage as far as Hayden's concerned. It was a complete disruption to his entire routine, & his whole neighborhood looked different. And for any child who thrives on familiarity, & on schedule, & on knowing what to expect, & how long something will take, & that things look the way they're supposed to... this was not only about stocking up on batteries & waiting in gas lines.
For WEEKS he was talking about the power, the generator, gasoline, trees falling, etc. Even after things were settling to a sense of normalcy. But after he stopped talking about the generator & all of those things, & he genuinely seemed to have moved beyond thinking about the storm, I would still witness these outbursts at home & learn of similar behaviors at school.
We've actually had a Behaviorist working with us at home-- she is here twice a week after school & has the opportunity to observe him in school as well. The good news is that she really hasn't corrected me when we're working through one of H's meltdowns, & consistently tells me that she wouldn't suggest I handle it any differently. The bad news is she doesn't see how I could handle these situations much differently.
At least once a week Hayden's behavior will escalate into this sort of disorganized, chaotic state... he will almost whirl about forcing things out of place, like a familiar Looney Tunes character until he either exhausts himself, starts to re-regulate, or is safely restrained by one of us. Basically which ever comes first, but typically the latter. This requires a wee bit of persistence on our part, because he will use his hands, feet, limbs, & even his mouth to resist us trying to safely control him.
But never would this emerge unless in the presence of someone he is comfortable with, & he knows he is safe with.
Hayden's broken x-chromosome interferes with his body's ability to produce a specific protein... one which is not needed in most organs of the body. Yet one organ that does need this protein... is the brain.
So you know what? We have conversations, we write in the communication journal, we send emails, we have team meetings (just had another one), Dan & I bring Hayden to specialists, we get reports, we share them with the school, the pediatrician is kept in the loop, we develop plans, we see what works, we track, we revisit, & as needed, we start all over again... we constantly need to talk about Hayden and we do.
I hate to use the term intellectual capacity in this context, but the fact is that people with fragile x syndrome do not have the intellectual capacity to orchestrate any significant catastrophe. Not only would they be incapable of such a thing from a motor planning as well as cognitive perspective, they wouldn't because they have HEART. Hayden demonstrates kindness, he knows how to love, he shows remorse, he wants to do well, & it's up to us to give him a chance to do so.
On Friday & Saturday I recall the endless posts of complete shock, a devastated society shaken to its very core, people sharing photographs & quotes in honor of all those angels who rose from the school that day. Within a day the hot topic switched to disagreements over gun control. (By the way just a week or so before this tragedy, I actually saw a discussion over the mall shooting... during which someone made a comment, "that's why I pack this time of year." I think that speaks for itself.) Anyway, fast forward just three days removed from this horror & are we as 'One Nation Under G-d' actually pointing our finger at autism?
Not everything is so black & white because obviously not everyone has an identifiable defect in their DNA. But in the wake of this unthinkable tragedy at Sandy Hook Elementary we need to talk about mental health education... we need to talk about resources... we need to make sure there is global awareness... we need to talk about the right to bear arms... we need to talk about antiquated laws & regulations surrounding this right (or lack thereof)... we need to talk about the media... & we may even need to talk about video games...
We need to address these topics with same level of urgency as bullying or hate crimes. A few hours ago I see this article pop up on The Huffington Post, reporting a significant surge in gun sales following Friday's massacre. There was bloodshed in an elementary school for crying out loud... & what do Americans do? They turn around & buy more guns & ammo.
It is up to us as a society to halt our irresponsibly hasty reactions, to gather all information, & to have a civilized discussion. On behalf of the voices that can no longer be heard, we need to first use our own voices... not our hands.
-
I'm eerily in disbelief that I happened to see this movie & less than two weeks later an unthinkable horror occurred at Sandy Hook Elementary School.
(By the way, people of the web, it's not Sandy Brook Elementary, or Sandy Creek Elementary... it's Sandy Hook. And it's not Newton. It's Newtown.
A big difference one letter can make because I will tell you at first glance, when I saw that on TV, it felt as if my heart was going to beat right outside of my chest... my eyes did not catch that second "w"... & with the address of my son's school being "Newton"... I was frozen. My father happened to be driving some place, was also mistaken at first when he heard it on the radio, & nearly swung his car around to head up here. Until we each realized it was Connecticut, even if only a moment later, it was enough to be terrified on top of horrified)
---
The film I'm referring to unfolds from the mother's perspective, about her son who she suspects there is something very wrong with. As a toddler, in response to her vague concerns, the pediatrician tells her that Kevin is absolutely fine. Still the viewer is confused as Kevin displays a complete, deliberate dislike towards her & is downright nasty. But Kevin is also careful about when he acts towards his mother this way, & is subtle about doing so in the presence of his father. By the time Kevin is a young kid, not much has changed & the husband only reassures his wife that all children develop at a different pace... & that incidents X, Y, & Z were just accidents.
We know at the beginning of the film that it's picking up after something terribly awful has already happened, because this is evident based on all aspects of the mother's very sad life. But as the whole story is slowly revealed through flashbacks, I was already heartbroken & frightened before the movie was anywhere near its climactic, gruesome finale.
I don't even remember adding this damn movie to my Netflix queue. (Same thing happened last week when some lame-ass Hunger Games documentary arrived in our mailbox & I have zero recollection of clicking on such a thing.)
I wish I never saw this We Need to Talk About Kevin, & I do not recommend it... especially now... in the wake of everything... it would be entirely, entirely too difficult to remember it's a fictional story. I actually wish Netflix would at least temporarily mark it as unavailable or something.
Even last night I was a little bit emotional over the thought of sending H to school today. And then when he safely arrived home this afternoon, I tried to shield my overwhelming sense of relief from the van driver because I didn't want to her think I'm a weirdo.
At one point late this afternoon, the school sent out a friggin instant alert stating to check the district site for a message from the superintendent. That's the same thing as saying, "We have something urgent to tell you but go to your computer to find out what it is." I thought gee that's not unsettling or anything.
It was basically a generic memo about the safety protocols in place & so forth, but the timing of the announcement was hardly comforting. They should have released the notification later in the day after most kids were already home. In the wake of everything it was momentarily nerve-wrecking to get this random alert without any upcoming school event or snow falling outside.
So after Hayden arrived home I went through his backpack as I always do... I emptied any uneaten food, cleaned the papers out of the folders, & checked the communication journals. They reported another tough day today.
Going back the last 25 journal entries, 9 of them begin with "H had a tough time today". Four of those tough days involved a lunch room incident.
You see, for a child with fragile x that actually makes sense... a lunch room is busy, it's loud, it's smelly, it's loud, you sit unsupported on a bench, & ... oh, yeah... it's loud.
But H has been eating lunch in that very same setting for years. This has never been an issue. However, during recent weeks it seems as though everything is an issue.
I sort of understood his challenging behavior near the end of November... when everything in the wake of Hurricane Sandy was probably just catching up with him. Kids with fx are globally, developmentally delayed & in general that may include a delay in processing something unfamiliar. This wasn't just an 8-day power outage as far as Hayden's concerned. It was a complete disruption to his entire routine, & his whole neighborhood looked different. And for any child who thrives on familiarity, & on schedule, & on knowing what to expect, & how long something will take, & that things look the way they're supposed to... this was not only about stocking up on batteries & waiting in gas lines.
For WEEKS he was talking about the power, the generator, gasoline, trees falling, etc. Even after things were settling to a sense of normalcy. But after he stopped talking about the generator & all of those things, & he genuinely seemed to have moved beyond thinking about the storm, I would still witness these outbursts at home & learn of similar behaviors at school.
We've actually had a Behaviorist working with us at home-- she is here twice a week after school & has the opportunity to observe him in school as well. The good news is that she really hasn't corrected me when we're working through one of H's meltdowns, & consistently tells me that she wouldn't suggest I handle it any differently. The bad news is she doesn't see how I could handle these situations much differently.
At least once a week Hayden's behavior will escalate into this sort of disorganized, chaotic state... he will almost whirl about forcing things out of place, like a familiar Looney Tunes character until he either exhausts himself, starts to re-regulate, or is safely restrained by one of us. Basically which ever comes first, but typically the latter. This requires a wee bit of persistence on our part, because he will use his hands, feet, limbs, & even his mouth to resist us trying to safely control him.
But never would this emerge unless in the presence of someone he is comfortable with, & he knows he is safe with.
Hayden's broken x-chromosome interferes with his body's ability to produce a specific protein... one which is not needed in most organs of the body. Yet one organ that does need this protein... is the brain.
So you know what? We have conversations, we write in the communication journal, we send emails, we have team meetings (just had another one), Dan & I bring Hayden to specialists, we get reports, we share them with the school, the pediatrician is kept in the loop, we develop plans, we see what works, we track, we revisit, & as needed, we start all over again... we constantly need to talk about Hayden and we do.
I hate to use the term intellectual capacity in this context, but the fact is that people with fragile x syndrome do not have the intellectual capacity to orchestrate any significant catastrophe. Not only would they be incapable of such a thing from a motor planning as well as cognitive perspective, they wouldn't because they have HEART. Hayden demonstrates kindness, he knows how to love, he shows remorse, he wants to do well, & it's up to us to give him a chance to do so.
On Friday & Saturday I recall the endless posts of complete shock, a devastated society shaken to its very core, people sharing photographs & quotes in honor of all those angels who rose from the school that day. Within a day the hot topic switched to disagreements over gun control. (By the way just a week or so before this tragedy, I actually saw a discussion over the mall shooting... during which someone made a comment, "that's why I pack this time of year." I think that speaks for itself.) Anyway, fast forward just three days removed from this horror & are we as 'One Nation Under G-d' actually pointing our finger at autism?
Not everything is so black & white because obviously not everyone has an identifiable defect in their DNA. But in the wake of this unthinkable tragedy at Sandy Hook Elementary we need to talk about mental health education... we need to talk about resources... we need to make sure there is global awareness... we need to talk about the right to bear arms... we need to talk about antiquated laws & regulations surrounding this right (or lack thereof)... we need to talk about the media... & we may even need to talk about video games...
We need to address these topics with same level of urgency as bullying or hate crimes. A few hours ago I see this article pop up on The Huffington Post, reporting a significant surge in gun sales following Friday's massacre. There was bloodshed in an elementary school for crying out loud... & what do Americans do? They turn around & buy more guns & ammo.
It is up to us as a society to halt our irresponsibly hasty reactions, to gather all information, & to have a civilized discussion. On behalf of the voices that can no longer be heard, we need to first use our own voices... not our hands.
-
Wednesday, December 5, 2012
poppy freddy
My grandfather adored babies. The day before Thanksgiving in November of 2001, when Dan & I saw Poppy on the eve of our engagement, I remember him in the doorway of my childhood home in Livingston. My grandparents arrived through the back door & had not even entered the family room yet, when the first thing my grandfather did was cradle his arms like he was holding a baby.
I was the first grandchild to become engaged & before he even uttered a "mazel tov", he wanted us to know his first great grandchild could not arrive fast enough.
My grandfather was a brilliant man & he was also a physician. I remember his Doctor's office attached to my mom's childhood home, & that of her three siblings. There was a door off the kitchen which led to the x-ray room & although I remember very little of the waiting room & exam rooms, I do recall a few occasions when Poppy removed his grandchildren's loose teeth from inside there. I also remember stories of us kids visiting him on the job at Hackensack Medical Center & my apparent curiosity in his work... such as the time I supposedly watched him stitch someone's finger back on following their motorcycle accident... as Jenna screamed & ran away.
I remember the way he ordered his soup at a restaurant. He would tell the waiter or waitress to make sure it was hot, & always specified temperature-hot but not spicy-hot. I remember he loved rice pudding as much as me but he would prefer to hold the cinnamon. I remember he loved chow mein, & I remember where he sat at the dining table in their old Victorian home: at the head on the opposite end from the doorway to the kitchen. I used to sit on the side opposite my grandmother's hutch. I remember many Passovers, when he skillfully pulled off a very believable Elijah presence.
But I also remember as I grew older so did Poppy. His handwriting became shaky, he was unsteady when using utensils, & over the years his balance & ability to walk were affected. As his motor functions declined over time, he went from using a cane, to needing a walker, & eventually a scooter. Mentally he was completely aware & understood he did not have Parkinson's, but at the same time the doctors did not know what was causing his tremors. His symptoms were ultimately chalked up to excess fluid of the brain due to natural aging. He had continued physical therapy & following surgery to drain some of the fluid he exhibited temporary improvement, but the tremors returned & when they did they were more severe.
In January of 2005 we visited him in the hospital in Portland, Maine to say our goodbyes. I told him the two names we chose depending the sex of the baby, & he mouthed to us that they were "beautiful". In June of 2005, approximately five months following his passing, our healthy baby boy entered this world.
Today, December 5, 2012 would have marked Poppy's 95th Birthday. Although he never met H, or knew I was carrying a boy, he did know he had his first great grandchild on the way & that in itself means more to me than I can put into words. It's an invisible bond that I am so fortunate to carry with me. Little did we know, that the year following Hayden's arrival, we would also learn that my son & grandfather share a very special gene as well.
Hidden in his DNA, & oddly in his very own name, Dr. Francis X. Rosner carried the FX gene. Four out of his seven grandchildren had a 50% chance of receiving this gene, but I was the sole lottery winner of this special X. This would all be revealed through our son Hayden, when he was diagnosed at 17 months of age.
As of last week that was six years ago. Although I can not begin to summarize the education we have gained during these last six years, I can tell you that it includes an answer to Poppy's symptoms called Fragile X-Associated Tremor/Ataxia Syndrome... commonly known as FXTAS (pronounced 'fax-tas'). FXTAS is a trait of male carriers of fragile x.
You know, to an extent I believe in the idea of a presence watching over all of us. Poppy, if this is true you will already know that lately we've had a difficult time with Hayden. Even just the last couple of days have been pretty rough. I thought about venting via my blog, but this time I decided against it. Writing is often therapeutic for me, but other times it feels like I'm reliving something difficult & I'd rather move on.
We're still going through the process of finding an appropriate treatment for Hayden, to help with some of his difficult behaviors. (Including another appointment with a new specialist tomorrow, actually.) But I need you to know something. For every bad day, every challenging behavior, every meltdown, & every tear that is shed... it is all outweighed by an immeasurable love inside of Hayden. And I wouldn't be able to appreciate such a beautiful, rare perspective if it weren't for you.
Not all fragile x days are bad days. Most of them are filled with moments like last night, when I sat down on the couch & casually said to no one in particular that I was cold. Hayden was in front of the TV watching a movie in his PJs, with his Thomas the Train blanket. He walked over to me in response, placed the blanket on me, & then sat in my lap.
I have a son who keeps me very warm from the inside out, & we have you to thank for that.
Happiest 95th Birthday to you, Poppy. I hope you're on the balcony in Palm Beach in that yellow chair... relaxing in the warmth of the sun... listening to the ocean behind you... & enjoying the best back scratch you ever had in your life.
I was the first grandchild to become engaged & before he even uttered a "mazel tov", he wanted us to know his first great grandchild could not arrive fast enough.
My grandfather was a brilliant man & he was also a physician. I remember his Doctor's office attached to my mom's childhood home, & that of her three siblings. There was a door off the kitchen which led to the x-ray room & although I remember very little of the waiting room & exam rooms, I do recall a few occasions when Poppy removed his grandchildren's loose teeth from inside there. I also remember stories of us kids visiting him on the job at Hackensack Medical Center & my apparent curiosity in his work... such as the time I supposedly watched him stitch someone's finger back on following their motorcycle accident... as Jenna screamed & ran away.
I remember the way he ordered his soup at a restaurant. He would tell the waiter or waitress to make sure it was hot, & always specified temperature-hot but not spicy-hot. I remember he loved rice pudding as much as me but he would prefer to hold the cinnamon. I remember he loved chow mein, & I remember where he sat at the dining table in their old Victorian home: at the head on the opposite end from the doorway to the kitchen. I used to sit on the side opposite my grandmother's hutch. I remember many Passovers, when he skillfully pulled off a very believable Elijah presence.
But I also remember as I grew older so did Poppy. His handwriting became shaky, he was unsteady when using utensils, & over the years his balance & ability to walk were affected. As his motor functions declined over time, he went from using a cane, to needing a walker, & eventually a scooter. Mentally he was completely aware & understood he did not have Parkinson's, but at the same time the doctors did not know what was causing his tremors. His symptoms were ultimately chalked up to excess fluid of the brain due to natural aging. He had continued physical therapy & following surgery to drain some of the fluid he exhibited temporary improvement, but the tremors returned & when they did they were more severe.
In January of 2005 we visited him in the hospital in Portland, Maine to say our goodbyes. I told him the two names we chose depending the sex of the baby, & he mouthed to us that they were "beautiful". In June of 2005, approximately five months following his passing, our healthy baby boy entered this world.
Today, December 5, 2012 would have marked Poppy's 95th Birthday. Although he never met H, or knew I was carrying a boy, he did know he had his first great grandchild on the way & that in itself means more to me than I can put into words. It's an invisible bond that I am so fortunate to carry with me. Little did we know, that the year following Hayden's arrival, we would also learn that my son & grandfather share a very special gene as well.
Hidden in his DNA, & oddly in his very own name, Dr. Francis X. Rosner carried the FX gene. Four out of his seven grandchildren had a 50% chance of receiving this gene, but I was the sole lottery winner of this special X. This would all be revealed through our son Hayden, when he was diagnosed at 17 months of age.
As of last week that was six years ago. Although I can not begin to summarize the education we have gained during these last six years, I can tell you that it includes an answer to Poppy's symptoms called Fragile X-Associated Tremor/Ataxia Syndrome... commonly known as FXTAS (pronounced 'fax-tas'). FXTAS is a trait of male carriers of fragile x.
You know, to an extent I believe in the idea of a presence watching over all of us. Poppy, if this is true you will already know that lately we've had a difficult time with Hayden. Even just the last couple of days have been pretty rough. I thought about venting via my blog, but this time I decided against it. Writing is often therapeutic for me, but other times it feels like I'm reliving something difficult & I'd rather move on.
We're still going through the process of finding an appropriate treatment for Hayden, to help with some of his difficult behaviors. (Including another appointment with a new specialist tomorrow, actually.) But I need you to know something. For every bad day, every challenging behavior, every meltdown, & every tear that is shed... it is all outweighed by an immeasurable love inside of Hayden. And I wouldn't be able to appreciate such a beautiful, rare perspective if it weren't for you.
Not all fragile x days are bad days. Most of them are filled with moments like last night, when I sat down on the couch & casually said to no one in particular that I was cold. Hayden was in front of the TV watching a movie in his PJs, with his Thomas the Train blanket. He walked over to me in response, placed the blanket on me, & then sat in my lap.
I have a son who keeps me very warm from the inside out, & we have you to thank for that.
Happiest 95th Birthday to you, Poppy. I hope you're on the balcony in Palm Beach in that yellow chair... relaxing in the warmth of the sun... listening to the ocean behind you... & enjoying the best back scratch you ever had in your life.
Tuesday, November 20, 2012
when it's my birthday, I'll beg if I want to
This week I am selfishly using my own blog about my son, for
my birthday wish. Because in seven days I want everyone to participate in the first ever, Giving
Tuesday.
This Tuesday, November 27th will begin a movement to create a national day of giving quite simply called Giving Tuesday. This effort is the first of its kind and aimed to sort of “nudge society past consumerism and towards community giving”… borrowing the words of an online article I saw, “A Perfect Antidote to Black Friday”.
Since the 27th happens to be only three days removed from my 27th birthday (or 37th, but who’s counting)… this is my wish. And if I may be so bold as to not-so-subtly hint at a suggestion… or two… your choice:
Both the National Fragile X Foundation (nfxf.org) and the FRAXA Research Foundation (fraxa.org) are tireless in their efforts to help and support the community people of affected by Fragile X. So this Tuesday we should support them, too.
Around the holidays the sheer number of charities promoting fundraising can leave us feeling almost helpless, as we lack the resources to respond to each one, and narrowing the list feels overwhelming. Not to mention this season of giving our hearts are with countless number of people who have been affected by hurricane Sandy, and indefinitely they will be kept in the forefront of our minds.
I am a born & raised Jersey girl and remain a resident today. Our home may appear unscathed but our hearts are not. We grew up spending the majority of our summers in Point Pleasant on our boat with friends and family. The first time my son saw the ocean was in Spring Lake, and the first real boardwalk he ever stepped foot on, was Jenkinsons. The original has been washed away but we will rebuild and we will move forward. And the latter is precisely what the NFXF wants us to focus on.
Hayden did not choose to be born with Fragile X Syndrome, any more than the homes affected by Sandy were chosen to be built in its path. He did not choose to be born with lifelong challenges, any more than people chose to have to rebuild their lives. And just like a hurricane and its aftermath, Fragile X continues to present us with the opportunity to come together for a common cause.
Hayden is like so many other children around the globe who have intellectual disabilities, sensory processing disorder, as well as speech and motor challenges. About a third of them are affected by autism as well. And this is hardly inclusive of the challenges they face every day.
For the first time in history, we— the community of people affected by Fragile X— are closer than ever to effective treatment options. Options specifically indicated for Fragile X Syndrome, and possibly even a cure. With ongoing clinical trials, the hope truly is on the horizon.
I hate that I have to worry about Hayden’s future because I’d rather worry about him becoming a teenager, and making ridiculous decisions. I wish I didn't have to worry about his safety, because I’d rather worry about him getting his driver’s license. I don’t want to worry about supporting him because I’d rather worry about his financial independence.
I want my kid to grow up, date the wrong person, mess up when he parallel parks... then one day, land some sort of cookie-cutter job in corporate America, quit it, & pursue something unrealistic... then announce his sudden engagement, plan a wedding on an accelerated timeline, bicker with me over a seating chart... and one day, give me a wrinkled copy of his first child's first school picture because my grandkid crumpled it. Ultimately I wish my Hayden could become a grown man with his own family to take care of, while having to constantly tell his forgetful, aging mother, "I already told you that, Mom!"
The stages in life that most people expect for their child(ren), are not ones we can assume for ours. This is why your help matters, and I am so grateful you have taken time out of your own day to hear me out. You have given me hope, & now you can pass it on to Hayden:
Please keep the momentum going... we have seven days to spread the word! One week from today on November 27th together we will witness the first ever nationwide Giving Tuesday. I hope you participate by visiting nfxf.org and/or fraxa.org ... because your dollar will help turn that hope on the horizon into a reality.
This Tuesday, November 27th will begin a movement to create a national day of giving quite simply called Giving Tuesday. This effort is the first of its kind and aimed to sort of “nudge society past consumerism and towards community giving”… borrowing the words of an online article I saw, “A Perfect Antidote to Black Friday”.
Since the 27th happens to be only three days removed from my 27th birthday (or 37th, but who’s counting)… this is my wish. And if I may be so bold as to not-so-subtly hint at a suggestion… or two… your choice:
Both the National Fragile X Foundation (nfxf.org) and the FRAXA Research Foundation (fraxa.org) are tireless in their efforts to help and support the community people of affected by Fragile X. So this Tuesday we should support them, too.
Around the holidays the sheer number of charities promoting fundraising can leave us feeling almost helpless, as we lack the resources to respond to each one, and narrowing the list feels overwhelming. Not to mention this season of giving our hearts are with countless number of people who have been affected by hurricane Sandy, and indefinitely they will be kept in the forefront of our minds.
I am a born & raised Jersey girl and remain a resident today. Our home may appear unscathed but our hearts are not. We grew up spending the majority of our summers in Point Pleasant on our boat with friends and family. The first time my son saw the ocean was in Spring Lake, and the first real boardwalk he ever stepped foot on, was Jenkinsons. The original has been washed away but we will rebuild and we will move forward. And the latter is precisely what the NFXF wants us to focus on.
Hayden did not choose to be born with Fragile X Syndrome, any more than the homes affected by Sandy were chosen to be built in its path. He did not choose to be born with lifelong challenges, any more than people chose to have to rebuild their lives. And just like a hurricane and its aftermath, Fragile X continues to present us with the opportunity to come together for a common cause.
Hayden is like so many other children around the globe who have intellectual disabilities, sensory processing disorder, as well as speech and motor challenges. About a third of them are affected by autism as well. And this is hardly inclusive of the challenges they face every day.
For the first time in history, we— the community of people affected by Fragile X— are closer than ever to effective treatment options. Options specifically indicated for Fragile X Syndrome, and possibly even a cure. With ongoing clinical trials, the hope truly is on the horizon.
I hate that I have to worry about Hayden’s future because I’d rather worry about him becoming a teenager, and making ridiculous decisions. I wish I didn't have to worry about his safety, because I’d rather worry about him getting his driver’s license. I don’t want to worry about supporting him because I’d rather worry about his financial independence.
I want my kid to grow up, date the wrong person, mess up when he parallel parks... then one day, land some sort of cookie-cutter job in corporate America, quit it, & pursue something unrealistic... then announce his sudden engagement, plan a wedding on an accelerated timeline, bicker with me over a seating chart... and one day, give me a wrinkled copy of his first child's first school picture because my grandkid crumpled it. Ultimately I wish my Hayden could become a grown man with his own family to take care of, while having to constantly tell his forgetful, aging mother, "I already told you that, Mom!"
The stages in life that most people expect for their child(ren), are not ones we can assume for ours. This is why your help matters, and I am so grateful you have taken time out of your own day to hear me out. You have given me hope, & now you can pass it on to Hayden:
Please keep the momentum going... we have seven days to spread the word! One week from today on November 27th together we will witness the first ever nationwide Giving Tuesday. I hope you participate by visiting nfxf.org and/or fraxa.org ... because your dollar will help turn that hope on the horizon into a reality.
Thursday, October 25, 2012
the patch
October 13, 2012
We finally got the patch on H!
We finally got the patch on H!
We had been waiting for summer to end (between swimming, sweating, etc, nothing to affect it staying in place)... then
we were waiting for a long weekend when we would be able to give it a
few days... otherwise the pediatrician said it would not be enough to
gauge the efficacy.
Finally before Columbus Day weekend we were going to give this a go, but H developed a nasty cold the Thursday prior. He didn't even return to school until the following Wednesday (he has never been out that many days in a row; he's one of those kids that gets an attendance award at the end of the year).
Finally before Columbus Day weekend we were going to give this a go, but H developed a nasty cold the Thursday prior. He didn't even return to school until the following Wednesday (he has never been out that many days in a row; he's one of those kids that gets an attendance award at the end of the year).
So the weekend of October 13th became
our next try. With Dan attending a golf outing that Monday, we would be able to get three days in with both of us home at the same time in the morning to hold Hayden steady & apply the patch. I also wanted Day One to be when we were home & not doing much, & therefore able to really monitor him.
The patch was on for a good nine hours so for that alone I am grateful. Things started out rough because he would not sit still, so when I put the clear sticky film over the patch (the one the pharmacy had to special order which also delayed our inaugural attempt), it crumpled in one corner. It is difficult enough in itself because it is so thin... but with a moving target it's even worse. So in order to hopefully make sure the thing would still keep the patch in place, we used a second sticky square (an unforeseen detail which unfortunately made the removal process quite challenging).
The patch was on for a good nine hours so for that alone I am grateful. Things started out rough because he would not sit still, so when I put the clear sticky film over the patch (the one the pharmacy had to special order which also delayed our inaugural attempt), it crumpled in one corner. It is difficult enough in itself because it is so thin... but with a moving target it's even worse. So in order to hopefully make sure the thing would still keep the patch in place, we used a second sticky square (an unforeseen detail which unfortunately made the removal process quite challenging).
After the first half hour or so he was finally OK... partially distracted by a run to DD with Gad. When we gave him a bath that evening I was able to get the patch off with baby oil gel, but it took a couple of tries. So at that point he already seemed worried about wearing it again.
However, trying to maintain the positive, the fact is we finally made progress. FIVE YEARS AND ELEVEN MONTHS after he was diagnosed... finally... some medicine in him. Hallefreakinlujah.
However, trying to maintain the positive, the fact is we finally made progress. FIVE YEARS AND ELEVEN MONTHS after he was diagnosed... finally... some medicine in him. Hallefreakinlujah.
I tried to coach myself into accepting that whether
this ends up being an appropriate treatment or not, as long as we get a
few days in him we can finally say we tried this one. We would have a
real point of reference & if nothing else when we see the next specialist in December, we will have one complete attempt checked
off.
As per our plan, the patch went on again Sunday morning but unfortunately Day Two (and Three) are not data-worthy. Turns out the boy who seemed a little tired Sunday was actually suffering from a stomach virus of some sort. (Conveniently, right on the heels of his nasty cold.) He missed a bit of school that week & then, to mirror the pattern earlier in the month, passed the stomach sickness along to his mom.
Finally this past weekend everyone in our home was well again. But having an important family event to attend, we didn't feel it was a smart time for more experimentation yet.
Then came Monday. Apparently there was a challenging situation at school but I would not learn about it until Wednesday.
October 24, 2012
The Principal calls me. Upon learning that the teachers hadn't yet discussed "Monday" with me, whatever that meant, he wanted to make sure I was informed.
I was told that Hayden's Aide had been injured. Today is now three days past the incident, & having spoken to the Principal, teacher, & Aide at this point I can better summarize what happened.
Hayden was completing a worksheet, had a break, & was being prompted to return to finishing his work. He was having a difficult time with this transition & began to rock the chair. To prevent him from getting hurt they held the chair still as best they could, but in his frustration he grabbed hold of the desk instead.
What I do know is that he did manage to partially lift the desk & move it, & when it landed his Aide's thumb took the brunt of the hit. Not thinking much of it, she tried to shake it off but it began to grow more discolored, swollen, & painful as the day went on.
She went to the doctor the following day & they confirmed it was a contusion. Her thumb was wrapped to limit the movement & help it heal. She is otherwise OK, & they all seem to agree it was an accident & Hayden had no deliberate attempt to injure her. More importantly, thank goodness no one else was hurt.
-----
This kind of thing worries the ever-loving crap out of me. The mere thought of someone misunderstanding his behavior... people not knowing that each behavior is merely a communication... the mere thought that another child could have inadvertently been hurt... people not knowing that my kid is not aggressive... the mere thought that there could be anyone in his life who does not realize his kind, caring disposition... people not knowing what fragile x is & how this gene can scream SO much louder than my child ever really would.
So I put a lot of faith & hope in this medicine, & I put a lot of faith & hope in the clinical studies. Especially those who have qualified for, & are participating in the clinical trials. Those who are contributing towards the development of an appropriate fragile-x-indicated treatment that these kids SO deserve.
My son does not even realize that the wrap on his Aide's thumb has anything do with a desk that he was releasing his frustration out on. But we will of course try the patch again, & this effort will be continued...
This kind of thing worries the ever-loving crap out of me. The mere thought of someone misunderstanding his behavior... people not knowing that each behavior is merely a communication... the mere thought that another child could have inadvertently been hurt... people not knowing that my kid is not aggressive... the mere thought that there could be anyone in his life who does not realize his kind, caring disposition... people not knowing what fragile x is & how this gene can scream SO much louder than my child ever really would.
So I put a lot of faith & hope in this medicine, & I put a lot of faith & hope in the clinical studies. Especially those who have qualified for, & are participating in the clinical trials. Those who are contributing towards the development of an appropriate fragile-x-indicated treatment that these kids SO deserve.
My son does not even realize that the wrap on his Aide's thumb has anything do with a desk that he was releasing his frustration out on. But we will of course try the patch again, & this effort will be continued...
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