We were less than five miles from camp this morning, when traffic slowed to a complete halt.
I thought we were lucky that it stopped before we actually passed the last opportunity to turn. I hesitated for two seconds because I was not completely confident that I knew how to get to the camp from the other direction. But one more glance at the never ending line of brake lights and I made a hard right to get the hell off of that road.
At first Hayden was asking questions but didn't seem bothered by the change in route. Then I made a wrong turn, and another, so by the second wrong turn he was clearly frustrated & screaming at me to go down the road we just turned off of.
He also listened as I tried calling my husband twice before the two wrong turns, and I wasn't able to get him on the phone, so that may have contributed to Hayden's anxiousness.
We finally passed a landmark which confirmed we were definitely on the correct road. The detour probably took us about ten minutes out of the way, but I am not convinced we would have made it to camp any sooner if we sat in that caravan of cars. From an anxiety standpoint, that would have been intolerable for Hayden, anyway.
He was a little bit "off" still when we got to camp, but luckily some buses pulled up and that distracted him long enough for me to leave.
When I picked him up from camp, they said he had a great afternoon but it was a difficult start to the day. He ended up missing morning swim which is one of his favorite activities, but their repeated efforts to get him changed and in the water fell flat. Today happened to be camp t-shirt day, so I was wondering if that threw him off-- because typically he would arrive at camp in his swim gear but today was different because he wore his camp T. Who knows.
Shortly after we got home, it was time for the behaviorist to arrive. Today she had the lovely occupational privilege of witnessing the motherload of all meltdowns.
I am trying to remember what the antecedents were, and I know it included (1) trying to correct his insanely loud hammering because we could not hear each other speak and (2) trying to encourage him to sit and eat his snack instead of bouncing around the living room with crackers falling everywhere.
Following non-compliance with both, that is what prompted me to turn the television off. His yelling then turned into a physical disaster of sorts. Switch on.
I know his armchair was overturned, his snack table was pulled away from the wall and all four chairs thrown about, the contents of his kitchen and his toolbox were scattered far and wide, the couch cushions were of course on the floor, his grill set was disassembled, and there was a mine field of wooden blocks and cars.
He just kept unleashing his wrath until everything was everywhere.
Finally he worked his way back over to the couch, where I attempted to keep him confined to the corner between both sides of the sectional.
I was getting kicked, slapped, scratched, shoved, whacked, teethed, spit on... and screamed at. The behaviorist was in the doorway on the other side of the room, and at one point I heard her say, "You're doing great, Mom."
I was only thankful that my back was to her because after several minutes I could no longer coach myself out of being upset.
Suddenly Hayden stopped. Apparently a neighbor had powered up their leaf blower, and with that Hayden sat up on his knees to look out the front window. Switch off.
I spent the next five or so minutes crawling around the living room to put it somewhat back together again. Eventually the behaviorist was able to prompt him to clean up one thing, and he put the blocks back in the their blue bin. Even after the ten minutes it took me to turn the damn television back on between our two broken remote controls, I finally got his show going again and he was essentially fine. He sat at his snack table and ate his crackers.
For the second time today, traffic slowed to a complete halt.
Clouds, May 2010
Monday, August 6, 2012
Monday, July 30, 2012
lucky thirteen
November 28, 2006 was an unassuming Tuesday evening. Hayden was asleep, Dan was at work (he was on night shift at the time), and I was preparing myself a late dinner.
You may or may not have already heard this story, but that was the night the pediatric neurologist called to say that Dan and I would need to come in and speak with him (the very next day) about Hayden's test results. I immediately threw back at him, "your staff already told me the results came back when I called last week, and that everything you tested for was negative."
After he and I had a bit of a back and forth, during which time he never even apologized for the colossal miscommunication, he finally said, "Well, the important thing is that now we have an answer and we can talk about it tomorrow." Or something to that effect.
When I tell you it was like pulling fangs to get the name of whatever Hayden tested positive for, out of him, I am not even doing it justice. I almost got in an argument with the man-- I did not care if he was a medical professional, because he had our life-altering results in his hands.
So he finally said it. I did not know what he was talking about... this fragile x?
"Is he going to be OK?" I demanded.
The answer he gave me: "There is no increase in hospitalization with people with fragile x." Then he proceeded to tell me that the primary difficulties are behavioral challenges and decision making.
OK... because to me, that sounds like nearly every child I have ever met in my entire life.
Then of course I did exactly what he told me not to, and went to the computer to look up this X thing.
Immediately, you will see one primary consistency with all search results: inherited intellectual disability.
This is not only how I learned it's a genetic disorder, as if that's not heartbreaking enough, but it was also confirmation that my son has something... not just developmental delays.
Our first exposure to the community of people affected by fragile x syndrome-- and the fact that there even was a community-- was via an extremely generous personal invite from The Clark Family to a FRAXA X Ball at New York City's Gotham Hall. On a rainy, cold, nasty evening we got all dressed up and schlepped into the city. We entered this overwhelming venue with ceilings so massive, one would look like they were watching an air show to take it all in. Dan & I sat quietly at our assigned table, and held hands underneath the draping tablecloth.
I do not remember what the presenters spoke about. I do not remember what items were up for silent auction. I do not remember how many people were at our table or who they were.
But one thing I do remember, is something that a mom sitting to our left told us. She said that prior to her son learning sign language, he would bang his head against the wall when he was hungry.
Hayden was about a year and half or so when we attended this X Ball. He was crawling, but not yet walking. He could communicate with a few signs, but was not yet talking. Her words terrified me that our own son's frustration level could increase one day, and the thought of him possibly hurting himself was too much for me to even think about.
My next exposure to the fragile x community was at the 11th International Fragile X Conference in St. Louis. I was there with my mom and spoke to no one, except my husband and my sister via panicked phone calls over what I was learning at said conference. All I remember about that conference is anxiety. Well that, and some t-shirt kiosk right in the mall attached to the hotel, where there was a shirt displayed that I actually asked to have removed.
It said, "I am we Todd did. I am sofa king we Todd did."
The first time I saw that "joke" was at a bar. Someone wrote it down on a napkin and told me to read it out loud. This was before I had Hayden, before I was married, and before I was even engaged. I was young, unaware, and I am beyond ashamed to admit... I think I even laughed.
Well, in St. Louis when I saw that stupid, pathetic t-shirt I felt overprotective and angry. I marched right up to this young man who was clearly clueless, and proceeded to explain what type of conference was currently in progress. And more importantly, who the people were who would see that t-shirt displayed. He did not hesitate and promptly removed it.
Since then I have joined Advocacy Day twice in Washington, Dan once, and we've also attended various other local day-conferences within driving distance. However I have had zero intention of going to another international conference. I knew when the 12th one in Detroit was held two years ago, I wanted to stay as far away from there as possible.
Over the years I have written some articles, began blogging, and we have participated in fundraising (by the way, Hayden's First Giving page for the NFXF's '$25 for 25 Years' raised the most money among all who participated in the campaign). Hayden has also been seen by many of the fragile x "celebrity" specialists-- from southern Jersey, up to Staten Island, and out to California.
But Dan and I had not yet attended an International Fragile X Conference together. We have never both been away from Hayden, at the same time, for more than one night.
Two days ago we returned from the National Fragile X Foundation's 13th International Fragile X Conference.
It was so exciting to even be able to point people out to Dan, to tell him, "they're the ones from Massachusetts who have a son a year older than H & he is so similar from the stories I read; and she's the one from Illinois with two kids, and her son is the one with that cool bike we considered for H; and that mom is the one with three kids who likes hip hop just like me; and that's the mom from Colorado who sent us the therapy swings; and she's the one who lives in PA who initially set up that TV interview," and, well... I could go on and on :-)
Thanks to the world of social media the facebook term "friend" has turned many, into just that.
(Btw, before we even boarded the plane home, Dan joined)
I don't just feel like we attended this conference... I feel like we participated in it.
Between a photographer from the Foundation who paid me an unexpected, incredible compliment for something very brief I said (off-the-cuff) during a video from Advocacy Day; and another mom who approached me as she told her mom I was the one whose son met Buddy from Cake Boss; and a new friend who quoted me during a conference session she headed with two other amazing moms; and the larger-than-life-size poster of us on display next to the table for Our Fragile X World (visit www.ourfragilexworld.org to learn more); and when Robert Miller himself took a picture of Dan & I in front of said poster; and being brave enough to complete unscripted/ unrehearsed parent interviews for an upcoming video; and actually contributing during the mother's lunch workshop; and showing off the very special, personalized FX jewelry handmade for me by Aloha Mom Creations... and anything else which was the complete opposite of me being a hermit crab.
I loved our conversations with 'heavy hitters' such as Dr. Hagerman, Louise Gane, Tracy Stackhouse, Sarah Scharfenaker, Ted Brown, Vicki Sudhalter, Katie Clapp, Linda Sorensen, plus an Editor from the Quarterly who encouraged me to write more... and last but not least, the opportunity to speak with a mom of a boy with fragile x from Europe who I remembered from the St. Louis conference.
Then there was the 'Mission to Lars' screening, so beyond incredible, that it officially bumped my previously all-time favorite movie 'Life is Beautiful' to second place... (www.missiontolars.com)
And the Marlins game when 13 year old Glenn Sheldon, who has fragile x, won the opportunity to throw first pitch... and did so, amazingly...
Plus a ton of other memorable moments in between... too many to list. Although the automatic window shades in the hotel room and gorgeous harbor view, deserve honorable mention as well.
I am sad that we had to depart early on Saturday, but I definitely needed the day yesterday to prepare Hayden for a new camp program which began today (different post to come). The only way was to leave when we did, and have the one day in between.
One year ago, for example, if the Fragile X Association of New Jersey had announced a get-together for families, I would have respectfully declined without even thinking twice. However, I am grateful there is an upcoming event in August during which we will have the opportunity to reconnect with some of these positively inspiring, amazing people.
Me and Dan are so blessed and fortunate to have such supportive families from both sides... and we can now say we have a third family of support among the entire fragile x community as well.
I wonder if most of them even realize just how much they strengthen this mom every single day.
Well, they will now.
You may or may not have already heard this story, but that was the night the pediatric neurologist called to say that Dan and I would need to come in and speak with him (the very next day) about Hayden's test results. I immediately threw back at him, "your staff already told me the results came back when I called last week, and that everything you tested for was negative."
After he and I had a bit of a back and forth, during which time he never even apologized for the colossal miscommunication, he finally said, "Well, the important thing is that now we have an answer and we can talk about it tomorrow." Or something to that effect.
When I tell you it was like pulling fangs to get the name of whatever Hayden tested positive for, out of him, I am not even doing it justice. I almost got in an argument with the man-- I did not care if he was a medical professional, because he had our life-altering results in his hands.
So he finally said it. I did not know what he was talking about... this fragile x?
"Is he going to be OK?" I demanded.
The answer he gave me: "There is no increase in hospitalization with people with fragile x." Then he proceeded to tell me that the primary difficulties are behavioral challenges and decision making.
OK... because to me, that sounds like nearly every child I have ever met in my entire life.
Then of course I did exactly what he told me not to, and went to the computer to look up this X thing.
Immediately, you will see one primary consistency with all search results: inherited intellectual disability.
This is not only how I learned it's a genetic disorder, as if that's not heartbreaking enough, but it was also confirmation that my son has something... not just developmental delays.
Our first exposure to the community of people affected by fragile x syndrome-- and the fact that there even was a community-- was via an extremely generous personal invite from The Clark Family to a FRAXA X Ball at New York City's Gotham Hall. On a rainy, cold, nasty evening we got all dressed up and schlepped into the city. We entered this overwhelming venue with ceilings so massive, one would look like they were watching an air show to take it all in. Dan & I sat quietly at our assigned table, and held hands underneath the draping tablecloth.
I do not remember what the presenters spoke about. I do not remember what items were up for silent auction. I do not remember how many people were at our table or who they were.
But one thing I do remember, is something that a mom sitting to our left told us. She said that prior to her son learning sign language, he would bang his head against the wall when he was hungry.
Hayden was about a year and half or so when we attended this X Ball. He was crawling, but not yet walking. He could communicate with a few signs, but was not yet talking. Her words terrified me that our own son's frustration level could increase one day, and the thought of him possibly hurting himself was too much for me to even think about.
My next exposure to the fragile x community was at the 11th International Fragile X Conference in St. Louis. I was there with my mom and spoke to no one, except my husband and my sister via panicked phone calls over what I was learning at said conference. All I remember about that conference is anxiety. Well that, and some t-shirt kiosk right in the mall attached to the hotel, where there was a shirt displayed that I actually asked to have removed.
It said, "I am we Todd did. I am sofa king we Todd did."
The first time I saw that "joke" was at a bar. Someone wrote it down on a napkin and told me to read it out loud. This was before I had Hayden, before I was married, and before I was even engaged. I was young, unaware, and I am beyond ashamed to admit... I think I even laughed.
Well, in St. Louis when I saw that stupid, pathetic t-shirt I felt overprotective and angry. I marched right up to this young man who was clearly clueless, and proceeded to explain what type of conference was currently in progress. And more importantly, who the people were who would see that t-shirt displayed. He did not hesitate and promptly removed it.
Since then I have joined Advocacy Day twice in Washington, Dan once, and we've also attended various other local day-conferences within driving distance. However I have had zero intention of going to another international conference. I knew when the 12th one in Detroit was held two years ago, I wanted to stay as far away from there as possible.
Over the years I have written some articles, began blogging, and we have participated in fundraising (by the way, Hayden's First Giving page for the NFXF's '$25 for 25 Years' raised the most money among all who participated in the campaign). Hayden has also been seen by many of the fragile x "celebrity" specialists-- from southern Jersey, up to Staten Island, and out to California.
But Dan and I had not yet attended an International Fragile X Conference together. We have never both been away from Hayden, at the same time, for more than one night.
Two days ago we returned from the National Fragile X Foundation's 13th International Fragile X Conference.
It was so exciting to even be able to point people out to Dan, to tell him, "they're the ones from Massachusetts who have a son a year older than H & he is so similar from the stories I read; and she's the one from Illinois with two kids, and her son is the one with that cool bike we considered for H; and that mom is the one with three kids who likes hip hop just like me; and that's the mom from Colorado who sent us the therapy swings; and she's the one who lives in PA who initially set up that TV interview," and, well... I could go on and on :-)
Thanks to the world of social media the facebook term "friend" has turned many, into just that.
(Btw, before we even boarded the plane home, Dan joined)
I don't just feel like we attended this conference... I feel like we participated in it.
Between a photographer from the Foundation who paid me an unexpected, incredible compliment for something very brief I said (off-the-cuff) during a video from Advocacy Day; and another mom who approached me as she told her mom I was the one whose son met Buddy from Cake Boss; and a new friend who quoted me during a conference session she headed with two other amazing moms; and the larger-than-life-size poster of us on display next to the table for Our Fragile X World (visit www.ourfragilexworld.org to learn more); and when Robert Miller himself took a picture of Dan & I in front of said poster; and being brave enough to complete unscripted/ unrehearsed parent interviews for an upcoming video; and actually contributing during the mother's lunch workshop; and showing off the very special, personalized FX jewelry handmade for me by Aloha Mom Creations... and anything else which was the complete opposite of me being a hermit crab.
I loved our conversations with 'heavy hitters' such as Dr. Hagerman, Louise Gane, Tracy Stackhouse, Sarah Scharfenaker, Ted Brown, Vicki Sudhalter, Katie Clapp, Linda Sorensen, plus an Editor from the Quarterly who encouraged me to write more... and last but not least, the opportunity to speak with a mom of a boy with fragile x from Europe who I remembered from the St. Louis conference.
Then there was the 'Mission to Lars' screening, so beyond incredible, that it officially bumped my previously all-time favorite movie 'Life is Beautiful' to second place... (www.missiontolars.com)
And the Marlins game when 13 year old Glenn Sheldon, who has fragile x, won the opportunity to throw first pitch... and did so, amazingly...
Plus a ton of other memorable moments in between... too many to list. Although the automatic window shades in the hotel room and gorgeous harbor view, deserve honorable mention as well.
I am sad that we had to depart early on Saturday, but I definitely needed the day yesterday to prepare Hayden for a new camp program which began today (different post to come). The only way was to leave when we did, and have the one day in between.
One year ago, for example, if the Fragile X Association of New Jersey had announced a get-together for families, I would have respectfully declined without even thinking twice. However, I am grateful there is an upcoming event in August during which we will have the opportunity to reconnect with some of these positively inspiring, amazing people.
Me and Dan are so blessed and fortunate to have such supportive families from both sides... and we can now say we have a third family of support among the entire fragile x community as well.
I wonder if most of them even realize just how much they strengthen this mom every single day.
Well, they will now.
Saturday, July 14, 2012
i scream, you scream, we all scream, for ...
Yes, anyone who really knows Hayden knows this entry can't possibly be about him. And you are correct :)
However, my favorite parental FX post of the day, from a Colorado mom (names removed for privacy):
"One really busy Saturday our NONVERBAL son got 4 different people to take him for ice cream by signing 'ice cream'. He might've been been saying that he liked ice cream, but we all separately assumed he was asking for ice cream and took him to Cold Stone. Only later did we realize that [my husband], one of our daughters, a care provider and I had all taken him on the same day."
Excellent!
Hypothetically speaking, this is definitely something Hayden would do to get his hands on more Dunkin' Donuts
However, my favorite parental FX post of the day, from a Colorado mom (names removed for privacy):
"One really busy Saturday our NONVERBAL son got 4 different people to take him for ice cream by signing 'ice cream'. He might've been been saying that he liked ice cream, but we all separately assumed he was asking for ice cream and took him to Cold Stone. Only later did we realize that [my husband], one of our daughters, a care provider and I had all taken him on the same day."
Excellent!
Hypothetically speaking, this is definitely something Hayden would do to get his hands on more Dunkin' Donuts
Friday, July 13, 2012
this one's for you, c.s.
There are fb 'rooms' (a.k.a. pages) for people in the FX community. they are closed groups visible by invite only, for our own privacy. But without using any names... there is a beautiful, beautiful post I feel compelled to share...
A mom of 22 year old son with FX, posted about their new neighbors who have two 8-year-old girls. Her son helped them get their scooter back from their older brother who was... you know, being an older brother. So later on the two girls thanked her son & asked the mom why he sometimes flaps his hands when he gets excited, & acts differently. The mom told them he has fragile x. So one of the girls said, "What's that? Something that makes him be nice & help people?"
I cried when I read that.
A mom of 22 year old son with FX, posted about their new neighbors who have two 8-year-old girls. Her son helped them get their scooter back from their older brother who was... you know, being an older brother. So later on the two girls thanked her son & asked the mom why he sometimes flaps his hands when he gets excited, & acts differently. The mom told them he has fragile x. So one of the girls said, "What's that? Something that makes him be nice & help people?"
I cried when I read that.
Thursday, July 12, 2012
Monday, July 9, 2012
a gene mutation may be a good thing
On Friday, July 6, ABC aired an episode of 20/20 about Heaven.
Barbara Walters spoke about what people believe it is, what people believe it looks like, and what are the perspectives of those we may tend to listen to?
She speaks with everyone from the Dalai Lama, to scientists, to people who have flat-lined and been brought back, and many other people in between. She also discusses the findings of many doctors and scientists, and what they believe.
Barbara Walters spoke about what people believe it is, what people believe it looks like, and what are the perspectives of those we may tend to listen to?
She speaks with everyone from the Dalai Lama, to scientists, to people who have flat-lined and been brought back, and many other people in between. She also discusses the findings of many doctors and scientists, and what they believe.
During an interview with a former geneticist for the National Institute of Health, the doctor explained how they conducted a study to learn whether or not spirituality is something we are possibly genetically predisposed to.
They asked study participants questions such as, "Do you feel some connection to other parts of the universe?"
They found that everybody has some level of spirituality, but some people are simply higher on that scale. So Barbara Walters dug a little further, to explore how spirituality might actually be a personality trait encoded in our genes.
The geneticist tested the DNA from study participants, and those who scored highest had a mutation of at least one gene that seemed to affect their level of spirituality.
In his words, "This particular gene controls certain chemicals in the brain, and those chemicals affect how consciousness works. They affect the way that our feelings react to events around us."
Barbara Walters also spoke with a scientist from the Thomas Jefferson University, who studied people while they were deep in prayer. By referring to brain imaging, this man was able to prove that people can go to a place with less of a sense of space and time, and more of a nirvana.
The scientist formerly from NIH also added, "Nature has given us the capacity to be spiritual otherwise the gene would not have survived evolution. It also tells us that spirituality may be simpler, or more difficult, for some people."
He said it’s a ‘belief-that-there’s-something-else-out-there’ gene.
Barbara Walters concluded, whether or not you believe in a G-d or a heaven we still need spirituality to make our experiences complete.
I know this was not a discussion about the FMR1 gene. But I also know that, technically, it could be...
If a gene mutation can be a good thing, then I'll take it. The idea makes more sense to me to consider the likelihood that a difference can be a strength, vs a weakness.
And I am happier at the mere thought, that just maybe, me and my son are genetically predisposed to be more spiritual than I give us credit for... more reason to be at peace than I've allowed myself to realize... and more reason to hope there is something else out there in his future.
Wednesday, June 27, 2012
the daily grind
Sometimes when I am making Hayden something to eat, I just don't seem to prepare it fast enough. I can be proactive and begin putting whatever it is together maybe a half hour before I think he'll ask for it. But when he stands too close to the stove, or too close to a knife, or some place that is inadvertently stalling me, I wish I could wave a magic wand and make some sort of baby gate appear around myself for a few minutes.
I think other Moms would say that is just part of being a mom. Moms are everything (or should I say everyone) from short-order cooks, chauffeurs, and personal assistants, to nurses, maids, and personal shoppers. I am all of those people too, although the maid part depends on the day.
From the time that Hayden was in Early Intervention (EI) and we educated ourselves, and made phone calls, and fought to increase his measly five hours of therapy a week to NINETEEN... and fast-forward to starting school when there were budget cuts and staff changes... I had to become our own professional Advocate.
When it was time to coordinate schedules for the 9 EI therapists covering 5 different therapy areas, I had to become an expert Planner.
In the years to follow, as I carefully orchestrated every single week of Hayden-coverage between me, my husband, our jobs, babysitters, grandparents, daycare, and school... I would put any A-list celebrity Assistant to shame.
By now I could act the part of a Physical Therapist, Speech Therapist, Occupational Therapist, or Special Educator. I could write a thesis on ADHD, hypotonia, apraxia, and exotropia (although I wouldn't want to). I'm pretty sure I hold a degree in behavioral issues, and I most definitely have my Masters in sensory processing disorder.
That is not even counting the amount of appointments, consults, observations, and paperwork that comes with the territory. Forms, evaluations, surveys, questionnaires, more forms, medical history, pregnancy details, outline of milestones, more forms, examples of his reaction in scenarios A, B, and C... or his understanding of D through F... will he eat foods G through M...
Yes, there exists an insane amount of paperwork with personal data on my son. And he's only been in this world for seven years.
But sure, you can call me a mom. After all when it comes down to it, I am simply the parent and caregiver of my own offspring.
I think other Moms would say that is just part of being a mom. Moms are everything (or should I say everyone) from short-order cooks, chauffeurs, and personal assistants, to nurses, maids, and personal shoppers. I am all of those people too, although the maid part depends on the day.
From the time that Hayden was in Early Intervention (EI) and we educated ourselves, and made phone calls, and fought to increase his measly five hours of therapy a week to NINETEEN... and fast-forward to starting school when there were budget cuts and staff changes... I had to become our own professional Advocate.
When it was time to coordinate schedules for the 9 EI therapists covering 5 different therapy areas, I had to become an expert Planner.
In the years to follow, as I carefully orchestrated every single week of Hayden-coverage between me, my husband, our jobs, babysitters, grandparents, daycare, and school... I would put any A-list celebrity Assistant to shame.
By now I could act the part of a Physical Therapist, Speech Therapist, Occupational Therapist, or Special Educator. I could write a thesis on ADHD, hypotonia, apraxia, and exotropia (although I wouldn't want to). I'm pretty sure I hold a degree in behavioral issues, and I most definitely have my Masters in sensory processing disorder.
That is not even counting the amount of appointments, consults, observations, and paperwork that comes with the territory. Forms, evaluations, surveys, questionnaires, more forms, medical history, pregnancy details, outline of milestones, more forms, examples of his reaction in scenarios A, B, and C... or his understanding of D through F... will he eat foods G through M...
Yes, there exists an insane amount of paperwork with personal data on my son. And he's only been in this world for seven years.
But sure, you can call me a mom. After all when it comes down to it, I am simply the parent and caregiver of my own offspring.
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