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"