This is an unsent letter to an old friend, who may or may not see this
one day. I do not want to seem confrontational, or put someone on the
defensive. I am just the quiet publisher for all of the "Haydens" out
there who have ever been misunderstood.
Dear Friend,
The truth is, from the bottom of my heart, I enjoy seeing how happy you
are. I mean that even though it sounds sappy (although I hope not
fake), because in every aspect from your career to your beautiful
family you have so much to be proud of.
I can imagine this is exactly what you
hoped for when we were kids & that makes me smile inside. I DO know
this is exactly what other people close to you hoped for, too. Even
though you & I grew up in the same town, & we lived in nice
homes, & we drove new cars,
& we shared a lot of the same friends, & trendy clothes, &
did all of the typical teenage stuff that teenagers do... I also know
that the closer I got to certain people in my life, the more I realized
how they may look the same part but be in a very different cast. For
example, how someone "just like me" was actually dealing with a
completely different family dynamic under their similar-looking roof.
At this stage of my life I have a much clearer perspective of the world
around us, & when we were younger I was not spoiled in the traditional
sense. I was spoiled the way some people assumed kids from Livingston were not:
with love, more so than lavish. My weekly allowance was ten dollars &
yeah, I had a nice purse to put it in, but I wasn't going out &
buying a new one every week.
So allow me to reiterate... when I see you & your beautiful family,
& how happy you are in your career, I can imagine this is exactly
what you hoped for when we were kids & that truly does make me smile
inside.
Gosh-- you & I had been out of touch for so many years now & until
our recent reunion with mutual friends, I did not know when or if I
might see you one day. I think we were all eager for a lot of catching
up. We each know bits & pieces but for all of us, that book we see via social media certainly doesn't
tell the whole story.
Well, part of Hayden's story is that his appearance is just like most
other kids-- in height, shape, & every other way upon glancing
at him. Ten fingers, ten toes, two eyes, two ears & a nose. But
deep inside of him, on his X chromosome, there is a defect preventing
his body from producing a specific kind of protein which we all need.
This protein is not used in most parts of our body,
but one of the organs that does need it, is the brain.
We do not expect
everyone to know this so we explain it to them. I may never know
exactly how you explained this, in some form, to your own children. But I do
know you said something to your kids before they met my son. Because
even when children realize there's something different with Hayden
because
of his speech or his behavior, I know they wouldn't realize exactly
what it was. Heck-- there are brilliant doctors out there in the world
who wouldn't know, either. Fragile x is still considered a rare
condition. Even though it is the most common inherited
cause of mental impairment, & the most common known cause of
autism, it requires a constant building of awareness in a world where
many diagnoses are simply misdiagnosed or undiagnosed altogether.
Being that you're a parent with a fair amount of experience in the field
of education, I would have assumed that you knew what to say. But when
your same-aged son was observing Hayden & then quite innocently made
an unexpected comment
to me, I knew he didn't come up with it on his own. He looked at me
with sympathetic eyes & said, "It's so sad when they have that brain
thing."
I was unprepared for such a comment & the only reply that came out
of my mouth was, "No it's not, it just means he's his own person." I
barely finished the sentence when you walked over & quietly reminded
him, "I said we don't talk about that". I pretended like I didn't hear you & we all acted like nothing happened. You were probably embarrassed, your son was probably feeling bad thinking he did something wrong, & I basically just felt uncomfortable.
Three things. First of all, your son did not do anything wrong.
Second of all, it wasn't until today that I realized what I
wish I had said. I should not have simply answered that this just means Hayden
is his own person. I should have accepted the curiosity &
said, "Why do you think it's sad?"
Third of all,
to that point, I beg your pardon but this is in fact something that we do talk about. We need honest, productive conversations in order for people to even begin
to understand Hayden. Do you know when someone asks me, "How's Hayden?"
the first thing I answer is, "He's happy." This is the most accurate
truth possible, because he does not know life any different. He
literally wakes up happy. Every day of his life he is spoiled with
nurture, which he so
deserves, & he has arguably the most contagious smile in human
existence. It is from a pure place, & it exudes real, heartfelt joy.
These are the things that you should tell your son.
Hayden is an engaging child & you can tell your son that he loves
school, & he loves his family, & cars, trucks, being active,
playing with other kids, pretending to fix things, & cook. He also takes great notice of his environment-- the people, the conversations, everything-- even when you think he isn't
paying attention. And actually, his intellectual capacity is far beyond
perception because he has qualities we would not have been able to teach
him. For example, he has a sense of humor & he's witty. He is also
empathetic. So you should also tell your son that Hayden is very social,
enjoys laughing with other children, & more importantly when
they're not laughing he likes to make sure they're OK.
One of the differences with Hayden, is that sometimes he is in
situations where there is too much stimuli. Sometimes he also has
difficulty using his words. I am sure your son would understand that
Hayden may
feel overwhelmed, & this may cause difficult behaviors. Sometimes
Hayden simply needs a break, because having fragile x makes it
especially difficult for him to be in control all of the time.
Now that
Hayden is in First Grade, this was my first year speaking with his
classmates about Fragile X. I offered them a little rhyme. I said, "when
Hayden is hungry he wants to eat; when he's tired he wants to sleep;
when he's happy he wants to play; but if
he's not feeling his best, he wants others to keep away." Just. Like.
Them.
As parents when we have conversations with our children, we need to
remember that what we say & how we say it can make all the
difference. Since we usually have the most influence on their
perspectives, we need to be responsible with this privilege. They are
going to remember everything & they are going to think they are
always right. For example, without even counting I bet any kid will tell
you they have ten fingers... because that's what they were taught.
Well what if you said they really have 11? What if you told them to hold up one hand & count backwards from 10:
10 - 9 - 8 - 7 - 6 .
Six, plus their other hand which is 5, equals 11.
It's just a different perspective. And one that most kids, no doubt, would think is funny & clever. It's not
sad that Hayden has a brain thing. He has something called Fragile X. It means that he learns at his own pace.
We all have an opportunity to learn & to understand differences. The only potential sadness in this equation, are the people who do not recognize Hayden's potential.
I hope that I have provided you an opportunity to learn a different perspective, & more importantly, one that you pass on to your children.
Love,
Cara
---
Clouds, May 2010
Thursday, January 31, 2013
Friday, January 25, 2013
march!
Get up and join me because we're going to advocate our asses off. (I am not yelling, so no exclamation point-- just stating a stern fact.) Maybe advocating is not actually a proven workout technique, but it will result in improvements.
I hope you read this because it's important. The 6th of March is fast approaching & there is work to do.
March is the month that can exhibit big climate changes in more than one respect. That is the crucial month in this country when Congress considers the federal budget for the following year. We all know the typical weather pattern in March, long ago inspired the saying it comes in like a lion & out like lamb. This is interesting as the same holds true for the "pack" of very driven, tireless advocates who march on Capitol Hill every year & apply their efforts to lead us in a steady direction.
Since 2004, The National Fragile X Foundation has been organizing and hosting Advocacy Day in Washington, D.C. They sponsor this annual event so that the rest of us have a unique & powerful opportunity to take part in legislative efforts.
People who attend Advocacy Day do not audition. There is no application for Advocacy Day, because you simply sign up. You just register, reserve a hotel room, & then you go to Washington. No fragile x experience necessary (for real).
The goal of the Fragile X Caucus is to promote public policies to enhance the quality of life for people with Fragile X. However, Advocacy Day efforts as a whole are hardly limited to benefiting the fragile x community. The constituents go to Washington to support investment in public health initiatives by means which include, encouraging funding research for both the National Institutes of Health (NIH) & the Department of Defense (DOD).
The research I am referring to will also benefit people with a wide variety of related disorders.
Advocacy Day is not just about Fragile X. Advocacy Day is about dissolving employment barriers & building economic opportunity. It's about all deserving individuals functioning as productive members of society. It's about the right to save & invest without penalties or loss of benefits. And overall, it's about constantly improving education & awareneXs.
-----
The constituents headed to Washington, D.C. on or before March 5th, 2013 have a packed two-day schedule ahead of them. Day One is Training Day. Advocates are presented with a wealth of information covering specific legislative efforts; they will participate in discussions over what they're asking from their Representatives & of course why. They are provided training materials, & even an opportunity to practice specifically what they want to say.
Day Two is Advocacy Day. All advocates head to Capitol Hill; their appointments are already set up for them (at least 3: 2 Senators offices & 1 Congressional Representative office). They are given a schedule & a map so they know which buildings & offices to go to, & when. They are joined by fellow members of the Fragile X community who live in the same state... technically speaking. I prefer to say they are joined by "family" members who carry the same passion.
My sister took me to my first Advocacy Day in 2009. I use the word "took" because she didn't join me-- she brought me there. At times it felt overwhelming & almost too fast-paced (not to mention bitter cold)... but it was also surreal & positively incredible. Keep in mind Jenna was already a NY state resident at the time, so for the most important part of the trip I literally had to separate myself from her. This wasn't helping me & my already-existing anxiety but there were other factors which would soon distract me.
I remember another mom from NJ, from the Princeton area, whose son with Fragile X Syndrome was now a young man. I remember her explaining the process of trying to establish at least some level of independence for him. In addition to whatever money they put aside for this very purpose, they knew he would also need other government benefits. But there exists some very outdated, downright archaic legislation in our country, which still to this day prevents such a person from claiming these types of benefits... if they have other assets in their name. When I say "assets" I mean an unrealistically low amount of funds to support a modern day lifestyle.
When this mom contacted Social Security to ask what exactly she was supposed to do with this money in her son's name, which he needs, the person she spoke with actually offered suggestions to "get rid of it". Such as buying her son a big flat-screen television. (Just a side note, you can put ABLE Act in any search engine & learn more about one of the many efforts which we've supported over the years.)
The one thought that my mind got completely stuck on, was that I did not want her to pass the torch to me. Nor do I want to pass the torch to anyone else. One day when Hayden is the same age as her son, I do not want to be in her shoes & STILL be doing this. STILL be advocating. We need to achieve our goals so this may become a thing of the past.
Through Advocacy Day I also learned about other Acts I didn't even know there was a need for... such as the Preventing Harmful Restraint & Seclusion in Schools Act. The only thing as scary as the need for this Act, is the fact this was just introduced to Congress in 2009. Roughly half of all states have little or no legal protection against restraint & seclusion in school.
-----
Well back to our personal family history with Advocacy Day, the following year my parents traveled to experience this unbelievable event for themselves. Then the year after that Dan & I finally had the opportunity to advocate together.
As far as this year, just because I am not physically attending Advocacy Day doesn't mean I still can't be there. The same goes for you. Anyone can take part in advocating, without even leaving the comfort of their own home. Through the National Fragile X Foundation site, you can access information on how to help. This is simple, fast, & free :) (This is not NJ-specific)
FOR EXAMPLE, YOU CAN CLICK ON THIS LINK RIGHT HERE:
http://www.fragilex.org/public-policy-and-legislative-advocacy/
-----
People who are a consistent part of Hayden's life clearly fill a role to him. This is one of the many ways in which Hayden is just like other kids. In his eyes we each have a part to play & if need be, he reminds us to adhere to this & stay in character.
Of course some of us play the role of multiple characters. For example, I am the Personal Assistant, the Maid, the Crisis Counselor, & the Chauffeur. But my starring role is Chef. Dan is Bedtime Commandant, Bath Time Safety Enforcer, Sunday Breakfast Coordinator, & the Sensory Board. But his starring role is Jungle Gym.
If you don't believe me, you can come over before I get home. When I walk in the door, Hayden will give me an enthusiastic hello & within five seconds he will tell me he's hungry. When Dan walks in the door, Hayden will give him an enthusiastic hello & within five seconds he will pull his own shirt off & tell Gad he wants to fight. (Sort of imagine Scooby-Doo wrestling his sidekick, Scrappy-Doo, but in this scenario Scrabby is a Labrador Retriever.)
Our most important role is one which Hayden would not fully understand. Therefore will never (knowingly) remind us to adhere to this & stay in character. Being Advocates is not our starring role, but is the one we are most proud of.
Constituents who attend Advocacy Day are grouped by state because it's logical & most efficient. Speaking for our home state these advocacy efforts help children & adults with fragile x who live all over Jersey... including Sabir who moved here just last year... including brothers Matty & Benji... including Allison's brother, Louis... Molly's brother, Justin... Jennifer's brother, Eric... I could go county-by-county & continue to introduce you to someone in the fragile x community.
Wherever you live right now, the truth is you do have the power to make a difference. Think of this as a good deed, an act of kindness, or a mitzvah. Or join me in thinking of this as advocating your ass off. Go ahead & show your stuff. Go on & send this to as many people as you can... let's see if we can inundate Capitol Hill with letters of support.
READY?
SET...
http://www.fragilex.org/public-policy-and-legislative-advocacy/
MARCH!
~
I hope you read this because it's important. The 6th of March is fast approaching & there is work to do.
March is the month that can exhibit big climate changes in more than one respect. That is the crucial month in this country when Congress considers the federal budget for the following year. We all know the typical weather pattern in March, long ago inspired the saying it comes in like a lion & out like lamb. This is interesting as the same holds true for the "pack" of very driven, tireless advocates who march on Capitol Hill every year & apply their efforts to lead us in a steady direction.
Since 2004, The National Fragile X Foundation has been organizing and hosting Advocacy Day in Washington, D.C. They sponsor this annual event so that the rest of us have a unique & powerful opportunity to take part in legislative efforts.
People who attend Advocacy Day do not audition. There is no application for Advocacy Day, because you simply sign up. You just register, reserve a hotel room, & then you go to Washington. No fragile x experience necessary (for real).
The goal of the Fragile X Caucus is to promote public policies to enhance the quality of life for people with Fragile X. However, Advocacy Day efforts as a whole are hardly limited to benefiting the fragile x community. The constituents go to Washington to support investment in public health initiatives by means which include, encouraging funding research for both the National Institutes of Health (NIH) & the Department of Defense (DOD).
The research I am referring to will also benefit people with a wide variety of related disorders.
Advocacy Day is not just about Fragile X. Advocacy Day is about dissolving employment barriers & building economic opportunity. It's about all deserving individuals functioning as productive members of society. It's about the right to save & invest without penalties or loss of benefits. And overall, it's about constantly improving education & awareneXs.
-----
The constituents headed to Washington, D.C. on or before March 5th, 2013 have a packed two-day schedule ahead of them. Day One is Training Day. Advocates are presented with a wealth of information covering specific legislative efforts; they will participate in discussions over what they're asking from their Representatives & of course why. They are provided training materials, & even an opportunity to practice specifically what they want to say.
Day Two is Advocacy Day. All advocates head to Capitol Hill; their appointments are already set up for them (at least 3: 2 Senators offices & 1 Congressional Representative office). They are given a schedule & a map so they know which buildings & offices to go to, & when. They are joined by fellow members of the Fragile X community who live in the same state... technically speaking. I prefer to say they are joined by "family" members who carry the same passion.
My sister took me to my first Advocacy Day in 2009. I use the word "took" because she didn't join me-- she brought me there. At times it felt overwhelming & almost too fast-paced (not to mention bitter cold)... but it was also surreal & positively incredible. Keep in mind Jenna was already a NY state resident at the time, so for the most important part of the trip I literally had to separate myself from her. This wasn't helping me & my already-existing anxiety but there were other factors which would soon distract me.
I remember another mom from NJ, from the Princeton area, whose son with Fragile X Syndrome was now a young man. I remember her explaining the process of trying to establish at least some level of independence for him. In addition to whatever money they put aside for this very purpose, they knew he would also need other government benefits. But there exists some very outdated, downright archaic legislation in our country, which still to this day prevents such a person from claiming these types of benefits... if they have other assets in their name. When I say "assets" I mean an unrealistically low amount of funds to support a modern day lifestyle.
When this mom contacted Social Security to ask what exactly she was supposed to do with this money in her son's name, which he needs, the person she spoke with actually offered suggestions to "get rid of it". Such as buying her son a big flat-screen television. (Just a side note, you can put ABLE Act in any search engine & learn more about one of the many efforts which we've supported over the years.)
The one thought that my mind got completely stuck on, was that I did not want her to pass the torch to me. Nor do I want to pass the torch to anyone else. One day when Hayden is the same age as her son, I do not want to be in her shoes & STILL be doing this. STILL be advocating. We need to achieve our goals so this may become a thing of the past.
Through Advocacy Day I also learned about other Acts I didn't even know there was a need for... such as the Preventing Harmful Restraint & Seclusion in Schools Act. The only thing as scary as the need for this Act, is the fact this was just introduced to Congress in 2009. Roughly half of all states have little or no legal protection against restraint & seclusion in school.
-----
Well back to our personal family history with Advocacy Day, the following year my parents traveled to experience this unbelievable event for themselves. Then the year after that Dan & I finally had the opportunity to advocate together.
As far as this year, just because I am not physically attending Advocacy Day doesn't mean I still can't be there. The same goes for you. Anyone can take part in advocating, without even leaving the comfort of their own home. Through the National Fragile X Foundation site, you can access information on how to help. This is simple, fast, & free :) (This is not NJ-specific)
FOR EXAMPLE, YOU CAN CLICK ON THIS LINK RIGHT HERE:
http://www.fragilex.org/public-policy-and-legislative-advocacy/
-----
People who are a consistent part of Hayden's life clearly fill a role to him. This is one of the many ways in which Hayden is just like other kids. In his eyes we each have a part to play & if need be, he reminds us to adhere to this & stay in character.
Of course some of us play the role of multiple characters. For example, I am the Personal Assistant, the Maid, the Crisis Counselor, & the Chauffeur. But my starring role is Chef. Dan is Bedtime Commandant, Bath Time Safety Enforcer, Sunday Breakfast Coordinator, & the Sensory Board. But his starring role is Jungle Gym.
If you don't believe me, you can come over before I get home. When I walk in the door, Hayden will give me an enthusiastic hello & within five seconds he will tell me he's hungry. When Dan walks in the door, Hayden will give him an enthusiastic hello & within five seconds he will pull his own shirt off & tell Gad he wants to fight. (Sort of imagine Scooby-Doo wrestling his sidekick, Scrappy-Doo, but in this scenario Scrabby is a Labrador Retriever.)
Our most important role is one which Hayden would not fully understand. Therefore will never (knowingly) remind us to adhere to this & stay in character. Being Advocates is not our starring role, but is the one we are most proud of.
Constituents who attend Advocacy Day are grouped by state because it's logical & most efficient. Speaking for our home state these advocacy efforts help children & adults with fragile x who live all over Jersey... including Sabir who moved here just last year... including brothers Matty & Benji... including Allison's brother, Louis... Molly's brother, Justin... Jennifer's brother, Eric... I could go county-by-county & continue to introduce you to someone in the fragile x community.
Wherever you live right now, the truth is you do have the power to make a difference. Think of this as a good deed, an act of kindness, or a mitzvah. Or join me in thinking of this as advocating your ass off. Go ahead & show your stuff. Go on & send this to as many people as you can... let's see if we can inundate Capitol Hill with letters of support.
READY?
SET...
http://www.fragilex.org/public-policy-and-legislative-advocacy/
MARCH!
~
Thursday, January 10, 2013
where is he now?
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.
(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.
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*
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