red, white, & blue

Earlier this week our nation acknowledged the 11th anniversary of the terrorist attacks from September 11, 2001. On Tuesday Hayden's school encouraged students and faculty to wear red, white, & blue.

Hayden has a t-shirt that says "Home of the Brave"-- it is gray, but on the front it has a design of the American flag stars & stripes, inside of a star shape. He knew that it was Red, White, & Blue Day at school and I explained to him that's why I picked out the shirt for him to wear. He always likes to see his clothes for the next day on his clothes tree, so since it was hanging there I pointed out the colors of the flag.

I wore a blue & white top and a pin:

The bottom pieces of the ribbon represent the Twin Towers and the back of the pin is embossed with, "Copyright 9/11/2001". Hayden noticed the pin while I was helping him get dressed and asked me about it.

I told him I was wearing it because I am showing support for America. I told him 11 years ago on this day there was an accident in New York City. Initially, he innocently answered, "that stinks." I agreed with him, and added that it was a horrible day or an awful day-- something to that effect. To which he asked, "What happened in that place?"

I told him that planes flew into buildings. In his own way, he asked why the guy flew the plane that way. I said because they were bad people and they wanted the buildings to fall down. My son actually asked me, again in his own way, how did the people get out. I said some of them made it down the stairs, and some did not make it out. "Smoke?" he asked. "Yes," I said, very proud that he understood. "Firemen?" he added. "Yes, there were so many firemen."

Later that day after school and work, he again pointed out my pin and we had a mini-recap of the conversation. It was brief, and then he started talking about something else.

Every year I wear this pin on September 11th and sometimes during the month of September, on and off. Hayden never asked about it before and I was glad he did, but I was also taken by surprise. I stalled for a moment because I didn't know what to say about the pin... do I just tell him it's the American flag and those are two buildings but leave it at that? Do I just say I'm wearing it for Red, White, and Blue Day, too?

In recent years Hayden is now grasping the concept of holidays but mainly the kind where there is some sort of gift involved. For example, I tried explaining to him why we were having dinner at Grandma & Poppy's on Sunday because it's Rosh Hashanah and it's the Jewish New Year. However, I could tell that wasn't really resonating with him and I just sort of stopped there... because to explain there are two different calendars... never mind.

But I think my child with special needs understands plenty:
He knows that on Tuesday, Mommy was wearing a pin. It has red, white, & blue in it just like the shirt he wore to school.
And he knows it is wrong to fly a plane into a building.

Yes, he understands just what he should.

the invisible pedestal

So, about that workshop I mentioned in yesterday's first grade post... allow me to elaborate (tiny bits of this may be repetitive from a previous post or two):

I used my last day of paid time off for the 2012 calendar year, to participate in a fragile x syndrome informational session at H's school. During the final teacher-in-service day before the official start of the school year, we had an entire 2-hour block of time reserved just for this focus... the focus of my 7 year old son... my 7 year old son with fragile x syndrome... simply because I asked for the opportunity.  

I was truly blown away to learn that Hayden's speech therapist of the past four years had put together an entire PowerPoint presentation. I entered the library yesterday afternoon and hanging from the ceiling was a large screen with the cover slide of the presentation already displayed, ready to begin. It was titled 'Fragile X' and in the bottom right corner was the name of his speech therapist, the name of his former teacher, and 'Cara Capela, Hayden's Mom'

And yes, you read that correctly: Hayden's former teacher who worked with him in both preschool and kindergarten and is technically no longer his teacher... but essentially out of the kindness of her own heart (and her adoration towards H), has remained involved in securing his education plan.

Anyway, the very impressive and thorough presentation included information gathered from some of the top specialists in the Fragile X community including Dr. Hagerman from the MIND Institute, as well as Dr. Sudhalter from the (most local) Fragile X Center at The George A Jervis Clinic of The Institute for Basic Research.

After paying me a very unexpected and generous compliment, Hayden's speech therapist opened the presentation by sharing something she remembered from 2008 when I first met the team of people working him at the school. She recalled, "Mrs. Capela said Hayden does not have autism."

And so began the portion on explaining the non-household-name syndrome, of fragile x. She addressed how fragile x and autism are connected, and how they are not, and which similar characteristics that Hayden may exhibit.

Then she and Hayden's former teacher spoke about his strengths (memory, sense of humor, and determination to name a few), as well as his challenges (motor skills, hyperactivity, and anxiety to name a few).

If you had been me sitting there... if you had seen the enthusiasm on the faces of these two amazing, admirable women who were standing up there in front of 20 or so of their colleagues, on behalf of MY SON... you just might get an idea of the gratitude which completely overwhelmed me. When the hour-and-a-half long presentation was through all I kept thinking was if there is even a soul in that room who was not receptive to this, for any reason-- because I know it's a lot of information to be presented with-- if nothing else, the heartfelt words coming from these two women would be enough to have anyone convinced that Hayden is worth the effort. And then some.

During their presentation they gave examples, and they recalled certain instances which were funny, and events which were surprising, and situations which were difficult. And other staff around the room who know Hayden would chime in and they'd laugh with them, or nod to their point... and it was as if we had this imaginary pedestal in the center of the room and Hayden was on top of it, with that beaming smile of his.

All of these people there to discuss how to support him was absolutely surreal. Here we are in New Jersey, in the middle of an education system trying to survive from an unprecedented economic climate, with funding slashed, the number of staffed reduced, programs affected across the board... etc, etc... and I had this incredible opportunity to say okay, I am going to do what I can with what resources and people we have available to work with.

When I was younger I imagined I would get married one day and have a family. I also imagined I would go back to work because for me, it felt right to maintain a sense of accomplishment outside of the home. It will warm any parent's heart to interact with their child, and it's indescribably fulfilling... but it also feels normal to interact with other adults, and I enjoy being able to contribute to our household while doing so. I was going to find my own appropriate work/family balance. It may not be suitable for the next mom, but it felt right for me.

So readjusting to our unexpected parenting experience, and readjusting this work/family balance, and readjusting my idea of the future... I am constantly experiencing a fluctuation between mourning our former expectations, and accepting this life that we have now.

I know that all of our challenges and difficult times will not just suddenly, permanently dissipate. There is no magic wand.
However... as I entered that library yesterday afternoon, it was as if I was walking through a new phase entirely. For the first time in a long time, I felt an unparalleled sense of accomplishment in myself and more importantly pride in our son, and most importantly hope for the future.

first grade

Every day there are proud parents sharing pictures via social media. Most recently, they're somewhat nervous parents sharing an image of their child about to begin the new school year.

Tomorrow I will likely be another proud, nervous parent sharing a picture of mine.

But first things first. I am going to my son's school today, during a teacher-in-service day, to speak with about twenty or so members of the staff about fragile x syndrome and Hayden (which I am nauseously-nervous over).

His speech therapist of the past four years has created an entire PowerPoint presentation, and I will distribute a new Student Profile I created for Hayden as well as fragile x resource sheets. 
 
During the anticipated two-hour presentation, the speech therapist along with Hayden's former teacher will do most of the talking. I will contribute for about 15-20 minutes during a question & answer session.

Needless-to-say, our first grader is not the same as other parent's first graders. Yes he is moving on from kindergarten the same as the other kids, but he is nearly a year older than most of them as we knew he would benefit from an extra year of preschool.

The parents of the other first graders are not coming to the school for a workshop about their son's disorder. They're not thinking about when they will speak to the class on a similar level, to make sure the curiosities of their child's peers are addressed. For most of these parents, their child's needs may include having their lunch cut up for them, or help with tying their shoes, or assistance in making sure some of their letters are not written backwards.

Their children will not arrive to school via a smaller vehicle from the district's transportation company. Their children will not carry a parent-teacher communication journal in their backpack. Their children will not be leaving class for therapies. Their children will not need extra clothing stashed in the classroom to prepare for toileting accidents.

So this sort of sucks if you look at it that way, doesn't it?
But parents such as those of us with children with truly special needs, have had to rework our way of thinking. This will never end.

Am I annoyed that it's one day before school begins and we're still ironing out transportation? Am I concerned that it's one day before school begins and we're still pending schedule details to prepare our son for the first day? Am I frustrated that the teacher of the classroom he was placed in is going to change mid-year due to maternity leave? Am I angry that we only learned of the upcoming change in routine with his afternoon Aide because his former teacher told us? Am I exhausted from having my radar up to all of these new details and inconsistencies? Yes, yes, yes, yes... and yes.

As Hayden's parents, no two people know better than us just how difficult a bad day can be (it brings a whole new meaning to the word "challenging"). Therefore I do not envy the job of the teachers. But likewise, we also know just how off-the-charts rewarding a good day will be. I do want all of the teachers to have the opportunity to witness those days.

So you see if our son was the same as other parent's first graders, he would not have a special ed instructor teaching him academics in a setting that is appropriate for his individual learning style. He would not have an occupational therapist who works with him to enhance his self-help skills, or a physical therapist who taught him how to pedal a tricycle. Nor would he have a one-on-one Aide who remains tireless in her efforts to keep him on track, on task, and focused. Even if it means sitting close enough for him to recognize a piece of mint gum in her mouth, which she figured out the scent of calms him. He would not have a former teacher who, out of the kindness and generosity of her own heart, is opting to remain involved in his education plan. (He would not have an Individualized Education Plan.) He would not have a speech therapist who put together a presentation to share alongside said former teacher, so together they can educate other staff members on how to help our Hayden.

In short, he would not have a team of people looking out for his best interest on a daily basis... some of whom, this is their primary responsibility.

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.

how one really good author can make a difference

This past Thursday our local weekly paper, The Township Journal, printed a special back-to-school insert. There is an article, 'How one really good teacher can make a difference', and we were thrilled to notice they included our honorable mention to Hayden's former teacher. Here it is in the third paragraph:

Well, we are thankful for the inclusion but some of you may also realize why we believe this deserves a reply.

Here is my email:

"Dear Sally,

I wanted to thank you for including our nod to Hayden's preschool and kindergarten teacher, Mrs. LaBouseur. What a wonderful surprise to see our feedback in the article 'How one really good teacher can make a difference'. I barely recalled submitting a few sentences in response to the ad that ran for a few weeks, to share if there was a teacher who had such a wonderful impact on your life. Out of context I had no idea what the responses might be used for, if anything, and without the online submission form really providing any additional information I sort of forgot about it. I am truly glad you encouraged readers to share the impact their teachers have had, and we are excited for Mrs. L to see it.

The article in itself is wonderful, and I think good teachers deserve recognition on an ongoing basis. When I submitted my Fragile X Awareness Day article last month (published under Viewpoints), I may not have mentioned but we never heard of the Andover Regional School district. We moved out here in 2005 due to our particular childcare arrangements, in anticipation of my return to work following my maternity leave. Well, before it was even time for Hayden to begin school we learned he has special needs.

From the very first moment we became familiar with Florence M. Burd School back in 2008, we were welcomed by a helpful, knowledgeable Child Study Team, a Principal who listens, very encouraging therapists, trustworthy aides, an unparalleled preschool teacher, and a kind, friendly bus driver. This school was undoubtedly an environment where our son Hayden would thrive. Even four years later, I can still accurately say the same thing about the people who work directly with him. His teachers, therapists and aides have remained so in-tune to Hayden's needs and are constantly evolving their techniques to match his progress and encourage his success. School is a place where our kids grow up, and it makes all the difference in the world when they are surrounded by people who believe in them.

I hope this puts in perspective just how meaningful it is for us, and how grateful we are, to have a public opportunity to give recognition to a teacher like Mrs. LaBouseur (such as on page 16, of the August 30th Township Journal).

That being said, I must clarify something.

Referring to how this is printed in the third paragraph, "Hayden's mother appreciates that Mrs. L... recognized the potential in her disabled son..." is not an accurate assessment. He is not our disabled son, he is our son... who happens to have Fragile X Syndrome. He is a person first. Disabled is not an accurate adjective to describe any human being, but may be more appropriate to give a description of a stranded car on the side of the road.

We use People First Language because we put the person before the disability. (I would encourage you and anyone else to please look up People First Language via any search engine, and learn a better perspective.) There is no such thing as a Down's child, or an autistic child, or a disabled child-- they may be a child with Down Syndrome or they may be a child with autism, but they are a child first.

Our language not only impacts the way we see a person, but it will impact the way they see themselves.

Hayden is not only 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 is able to learn, and to play, and to interact with others and he easily finds his way into the hearts of nearly everyone he comes in contact with. He is not our disabled son. He is our son who is able to love life and it shows in everything he does.

Thank you for taking the time to read our feedback and once again, overall we do appreciate the inclusion. But as a mom, a caregiver, and an advocate I will always continue to demonstrate the utmost respect for my son. We hope moving forward, you maintain a similar perspective.

Sincerely,
The Capela Family"

traffic

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.

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.

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