Clouds, May 2010

Clouds, May 2010
Clouds, May 2010: This picture was taken from the car window on Route 80 in NJ. The lines in the sky are obviously from planes, but the fact that they form an "x" caught my attention. And after I snapped the pic, I noticed the cloud to the left as it looks like a boy's face.

Monday, May 4, 2015

happy tears

I do not have the faintest idea why I am so emotional-- good or not so good-- in response to most things Hayden... (said no parent of a child with fx, ever)

Well as of late, our Sundays have been no exception to this pattern. Hayden recently joined a t-ball group with his cousin Kaitlyn. In her township, this is one of various activities available through a recreation program called PEAK (Parents of ExtrAordinary Kids). She has participated previous years as well, but we have never been in a hurry to sign Hayden up for sports (his interests tend to lean towards cars, trucks, & tools to name a few). 

Well needless to say we decided to give this a try & our expectations were to get him there. Period.

So, here we go with the emotional response... because as soon as H got to the ball field, my eyes welled up with pride... the way he immediately ran ahead of us & was anxious to participate.. & when I saw him go up to other kids, extend his hand, & say, "I'm Hayden"... I can barely put into words how wonderful that was to witness. For me this was already a positive memory, regardless how the rest turned out. 

Of course I was taking pictures every minute or so, & when I saw the X in the sky my heart skipped a beat. For anyone who knows me & knows how this has been my thing for about five years now-- (possibly) obsessed when I spot an X in the sky-- I look at these pictures of H at the tee with that beautiful sign above him & it just warms my heart.

On that note, without going into every detail of every ten minutes, I will say the second week was amazing as well. A couple of people from the school expressed interest in wanting to see him play, but I didn't say anything to H in case one or both of them couldn't make it. And when we showed up the following week for his second game, he had an entire cheering section waiting for him-- literally. Over by one of the picnic tables there was an entire group ready to root him on.

(Cue more happy tears...) 

I still get choked up every time I look at that picture & the pure joy on his face.

I missed yesterday's game-- week three-- but had a very good reason which I'll get to in a moment. (It actually turns out we have multiple scheduling conflicts with the t-ball games, & despite our best efforts he is going to miss more than one but I am glad we tried.) Hayden still had a wonderful cheering section... both sets of grandparents were there, both of his Aunts, & all of his younger cousins (his second older cousin, Kaitlyn's brother, was at the last game) :) I wish I had been there to spend time with my sister & nieces who schlepped out from NY... but I also heard when they were at lunch after, Hayden tried a smidgen of chocolate ice cream! (And so did his jersey which I spot-bleached, but didn't know what the heck the stains were from.) Sensory issues frequently interfere with his diet so I love when he tries something out of his comfort zone! It does happen occasionally! Here is an adorable picture of Miss Flora happily encouraging him:

Anyway, the reason I missed it...
The NJ Community Support Group (CSG) is part of the National Fragile X Foundation's (NFXF) parent volunteer program, & as most people know I co-lead the NJ CSG alongside my friend Paula... (here we are if you ever need us...)
We had set the date for yesterday's Planning Meeting before I knew about t-ball. But we had a very fun, productive meeting which Paula graciously hosted in her lovely home.

Amazing mamas <3 
I learn new things every single time I am with other parents within the fragile x community. Like they say, hands-down the very best & most incredible club that we would not have wished to be a part of.

The next bit of good news I've been anxious to share ever since we had Hayden's annual IEP (never thought I'd say that one...), is an unexpected change that I successfully FIXED. 

So when I got the revised draft of Hayden's IEP & I saw the summary under "Parent Concerns"... there went those happy tears sneaking up on me again. It states:

"Mrs. Capela is very happy with Hayden's growth in all areas. She was concerned with the changes to [something something]. Hayden performs significantly better when there is structure and routine. After the conclusion of the IEP meeting [in other words, upon receipt of my letter] the Andover district made changes to the school's [something something]. Hayden will now be eligible to [have things the way they should be ;) ]."

All because I spoke up, & supported my concern with specific reasons why it should be fixed. Advocating works!
Okay, well, maybe not every single time... but even if you don't achieve the exact outcome you were striving for... it is still VERY important for decision makers to hear your voice. That much I can promise.

Speaking of advocating, last but certainly not least...
One year ago I met with Senator Oroho to discuss National Fragile X Awareness Day being recognized in the state of NJ. The date would be aligned with the official national date of July 22nd... which by the way has been recognized by Congress since 2010, & was also adopted in various states both before & since that time... with July 22nd being the majority date of observance.

Senator Oroho & Senator Vitale are both Primary Sponsors & today, May 4, 2015 the bill was reviewed by Senator Vitale's Health, Human Services & Senior Citizens Committee
When we have the official word that it has passed, the world will know :) 

This concludes my long overdue blog update for now... stay tuned, I will return... <3


Monday, March 9, 2015

AD in DC for H

Last week Dan & I participated in the 10th annual Advocacy Day (AD) hosted by the National Fragile X Foundation. The two-day event in Washington, DC begins on the first Tuesday in March, & this is when the NFXF provides training for all constituents. The next day, on Wednesday, is when we go to Capitol Hill.

The NFXF works with an agency which schedules all of our appointments for us, & they're all held throughout the day on Wednesday. So each of us meets with our respective Members of Congress (MOC) based on where we live. Occasionally we do meet with an actual Senator or Congressman or Congresswoman, but often times our appointments are with staff members such as Legislative Aides. During the approximate 15-minute meetings, we tell our story, present our "asks", & provide them a leave-behind folder with all the specifics:

Every year the first ask is for continued funding of Fragile X research from the NIH, CDC & DoD. Each budget year as funding is set, our goal is to get our MOC to sign a letter to the Appropriations Committee. The letter asks them to support Fragile X as a priority... & this is how millions of dollars are secured for research funding.

Our second ask is for the co-sponsorship of the T.I.M.E. Act. This stands for Transitioning to Integrated & Meaningful Employment Act. The bill is designed to gradually transition people with disabilities from working in sheltered, segregated employment-- & sometimes for far below minimum wage-- into integrated employment positions with much better wages. 

Our third ask is for the co-sponsorship of the K.A.S.S. Act. This stands for the Keeping All Students Safe Act. The bill addresses unacceptable harmful restraint & seclusion of students with special needs. NFXF constituents have advocated for similar bills in the past & we continue to advocate & hope that our MOC will pass this crucial bill.

Collectively, our asks will not only benefit the community of people affected by Fragile x but far beyond. Even the research funding, considering the overlap of so many other disorders with the various fragile x-associated disorders-- science has taught us that treatments developed for one, can & will benefit many.  

For me personally, this was my fourth time attending AD (although not consecutively). Every year the experience never ceases to be special from beginning to end. This year was no exception as Dan & I were joined by Dr. & Mrs. Irl Rosner from Maine... a.k.a. my Uncle Irl & Aunt Gail.

Having the opportunity to attend the Maine appointments this year was an excellent experience in itself. Every year Advocacy Day begins with a picture of all the advocates on the steps of the Capitol building, followed by a tour inside led by Congressman Harper from Mississippi. His son Livingston has fragile x syndrome & he is a powerful voice for our community. Funny thing, by the way, my hometown is Livingston & my parents had bought a Livingston sweatshirt for Congressman Harper's son. It is green with white lettering, too-- could not be any more fx appropriate! I finally gave the sweatshirt to him this year :)

Anyway our special tour led by Harper includes the Hall of Columns, the breathtaking Rotunda, the Statuary Hall, & most amazing... we get to sit in the actual seats of the House Chamber. It's pretty incredible. One year we also took turns, in small groups, experiencing the view of Washington Monument from the balcony. After the tour, a staff member led us to the underground subway which is another privilege we otherwise would not have access to. 

This year our first appointment was with Senator Angus King's office. My aunt & uncle know him from back home, & it was a wonderful experience to walk into an office & have people know the people you are with. I certainly got a kick out of it-- even some of the young staffers knew my aunt & uncle, because they're the same age as my cousins. Following a coffee reception which they do on Wednesday mornings when the Senate is in session, we met with a staff member to discuss "business". But before heading to our next appointment, the Senator gave us a tour of his private office which was a separate treat in itself.

After that we were off to the House side where we met with Representative Bruce Poliquin. This man is also a friend to my aunt & uncle, & that was about the only reason he saw us that day... because apparently he just had eye surgery (I think the day before) & therefore his staff canceled all of his appointments. Poliquin was so welcoming though, & very receptive... the meeting could not have been more encouraging.

We had three more appointments that day-- two in Maine offices & one for New Jersey. But aside from the obvious detail of how incredible this was to experience Advocacy Day in a different way with my aunt & uncle, I want to share another perspective of why this was so meaningful... 

About a year & a half after Dan & I were married, we went for genetic counseling because we wanted to start a family. We had specific reasons for doing so, which I'll get to in a moment, but the fact is each of us carries 
certain genetic risks common to our heritage. (And approximately two years later we would learn of another type of genetic risk that doesn't "discriminate".)

Following the carrier screening specific to my Jewish ancestry though, we learned I have a gene for one of those disorders. 
Another reason we went to see a genetics counselor was because my niece was born with Down syndrome.

As far as the results of my genetic screening, in order for that particular disease to be passed on, both parents have to be carriers & then there is a 25% chance. However since Dan is Portuguese & Italian, & does not have any Jewish ancestry, the probability was greatly reduced to say the least. 

As far as my niece is concerned, even though Down syndrome is not inherited, my doctor felt we should educate ourselves since it is genetic. Furthermore, meeting with a genetics counselor allowed us the appropriate opportunity to review our family trees to make sure there was nothing else to discuss. One of the many questions they asked us about family history, was if there was any mental impairment.

What a different perspective I had back in 2004... I could have almost giggled at that one...

But truth be told, little did I know, my mother had an Uncle Hymie who was described as being kind of "off". Yet considering circumstances of him being born during the Depression in an orthodox home, on a table with forceps (so I was told), all logic pointed to birth trauma. Hymie had two siblings-- my grandfather Francis & my great aunt Beverly. My grandfather was exceptionally bright, as is my Aunt Bevy, but then there was Hymie. There was a clear difference between him & siblings.

Francis, a.k.a. Poppy Freddy, went on to become a physician after not only graduating high school on an accelerated timeline, but also finishing medical school early. He married my grandmother & they had four children: my Aunt Judi, my Aunt Lois, my mom, & my Uncle Irl.

Their Uncle Hymie passed away when my Uncle Irl was about the same age as Hayden is now. I was told he died instantly in a truck accident-- he worked for some sort of delivery company & he rode on the back or the side of whatever the vehicle was.

Fast-forwarding to present day... the NFXF Advocacy Event is attended annually by parents, siblings, self advocates, or anyone with a big heart who wants to help make a difference. On Tuesday, March 3, 2015 at the NFXF training session the day before Advocacy Day, we were all together in one of the hotel banquet rooms-- tables organized by state-- seated among various constituents present for the same reason. Among those advocating, many individuals with fragile x syndrome-- children & adults alike. A couple of tables away from where we were seated was a young man & self advocate from Missouri. But my Uncle Irl saw this man & said to me, figuratively, "That's my Uncle Hymie." This was the first time in 50 years that he ever even saw someone who reminded him so much of his late uncle.

He paused with his hands beneath his face, lowered his head, & with a closed-mouth smile & eyes welling up... the experience became significantly more than being there for his great nephew Hayden.

One of the interesting facts that gave all of us chills so-to-speak, following Hayden's diagnosis & then consequently tracing the gene back in my family... was the unbelievable detail that my maternal grandfather's first two initials were FX. His full name was Francis X. Rosner... no middle name, just the initial (the idea came from a well-known actor from the early 1900s). Such an unusual combination of letters, though, & I can't believe he not only carried the gene, but literally carried FX in his very own name.

Hayden Zem, by the way, was named for my late paternal grandfather Harvey Zamelsky, whose nickname was Zemsinn. But it's pretty interesting because after we got home from Washington, I suddenly realized that Hayden having an H name turned out to be even more appropriate than we could have ever known. He carries his H but his X makes him unique-- just like someone else.

I hope my great grandma Anna-- who was still around when I was a young child & I do remember-- now knows that her beloved Hymie who she lost entirely too soon, lives on through my son & will always be remembered.


Saturday, February 28, 2015

different but okay

I have three amazing updates to share.

First, Hayden earned another Random Act of Kindness Award for helping a classmate in the special ed room :)

Yeah. He's awesome.

The second one needs a little bit of explanation but here goes...

So, in our world many things are a measure of progress, including scribble. Which is exactly what the picture below probably looks like to most people. However on February 25th Hayden wrote the first three letters of his name, for the very first time. Although they do not appear to be in the correct order on the page, they actually ended up that way simply because he fit them wherever there was room. But he did appropriately write the "H" first & then the "a" & then the "y".

You have to see through some extra marks but if you look at the picture without staring too intently... notice the "H" is to the far right (it's sort of crooked)... the "a" is near the center (looks like a lowercase "e" in script, but he drew the round part & then deliberately added a line to the right of the circle)... & the "y" is on the left:

Here they are separated out, in the correct order:

That is hands-down the most amazing thing I have seen in a long time. Difficult for me to express my pride in words.

Third... (I have saved the best update for last

During today's progress meeting at school the teacher mentioned that one day just a couple of weeks ago, a buddy at school brought H something from another classroom. One of the aides or the teacher who was with Hayden at the time said, "Why don't you invite (the buddy) to see your classroom?"

Hayden is with Gen Ed peers too, but the context here was that he was walking back into the Special Ed room.

Well, as Hayden & his buddy entered the classroom H said very matter-of-fact (apparently):
"Things are a little different in here."

The other child was more than fine with this, which is wonderfully amazing in itself, but what I'm talking about is the amount of incredibleness that is squished into that single statement...

"Things are a little different in here"

not to mention the maturity & appropriateness of what Hayden said... & the timing... & the fact that he is becoming self-aware enough to notice this... & most importantly... that he just wanted to help the other student understand.

I don't mind admitting that hearing this was the first time I nearly cried at a progress meeting. Welling eyes further encouraged by learning that Hayden's schedule is once again being refined, to increase his participation in the Gen Ed setting with same-age peers. Thanks to technology combined with Hayden's ever-improving speech, his academic progression is clearly evident. And socially I am beyond grateful for the kind, patient, & understanding kids... like his buddy who enjoyed the tour of Hayden's other classroom & is completely accepting of things being a little different in there.

Next week by the way is the National Fragile X Foundation's annual Advocacy Day. Constituents from around the country travel to Washington, DC & attend meetings with their Members of Congress. (I strongly encourage you to learn more.) Not that I ever need extra motivation to attend Advocacy Day to share our story with legislatures, along with many other awesome constituents from the fragile x community, but if I did... this not-so-little update on Hayden's progress would just about push me the rest of the way to Capitol Hill.

#awareness #understanding




Wednesday, February 11, 2015

a knock at the door

Many parents within the fragile x community have truly incredible blogs. Reading some of them is almost as compelling as watching a show you're hooked on, only they're not acting.

A couple of friends recently shared blog posts which stirred familiar thoughts in me. And furthermore, relatable challenges which have been on the forefront of my mind lately (funny how that happens).

Holly is a mom of two from Illinois, & here is her most recent update :)
Cindi is also a mom of two & she is from Colorado. This is her latest blog post :)

While one is a present challenge & another is a recollection from the past, both experiences are insightful, educational, & brave. I would encourage anyone to read them. Their words help shape assumptions into understanding.

I was going to discuss that it's no surprise how maintaining schedules & adhering to routine are definitely near the top of the list of priorities for most kids with fragile x syndrome. I have been working on this blog post on & off for a couple of weeks now (literally). Partly revising the draft because there are so many different points I wish to emphasize, & partly just a side effect of recent computer issues. But one thing rings predominantly true-- that many of the challenges we have, carry over to aspects of life that I wouldn't have expected them to.

Most of the time the routine of the day is mutually comforting because we all know it works. But that being said, there is not any one approach that will always be successful for any one challenge. It may depend on the day, the hour, the mood, the environment... as with any person.

Possibly amplified with a child who has fragile x.

But after an occurrence from just last night, I have one incident in particular that I wish to share. This happened to someone we know-- for real, not in quotations-- but the family experienced a situation that COULD happen to any one of us.

With respect to privacy I am not going to specify friend, relative, near, or far--
but I will say, it's a family with two children. I won't even mention son, daughter, both of one, or one of each. I will only tell you that the younger child is Hayden's age, has autism, but is high functioning. The older sibling is in middle school & has some behavioral challenges.

It was that sibling who happened to have a behavior episode at home last night, & long story short around 7- 7:30PM the family was startled by sudden, strong knocks at their door. A male voice exclaimed, "This is the police." The homeowners responded immediately & found two officers standing on their doorstep.

Dan & I have often admitted amongst ourselves that if anyone ever heard what goes on in our house when we are trying to trim Hayden's nails, one might suspect a murder scene. I don't believe we would ever be able to live in any type of building that has a shared wall (or walls) with others. And that's just nail trimming-- which by the way when we're done, is like an off-switch. H simply returns to a completely unphased state, immediately after the last clip of the clippers. I don't even want to help you imagine what it's like when he has a meltdown over something less controlled.

What ultimately happened with this family with the two children, is that someone down the street from them called for help because they suspected a domestic violence dispute-- this is as much as the police told them.

We should all be so lucky to live near at least one person who wouldn't ignore unusual signs or signs of a struggle. At the same time it's very difficult to be thankful for such neighbors during this type of instance-- who were hopefully just concerned & not disguising a noise complaint.

The officers were kind & understanding, but the humiliation & invasion of privacy during a vulnerable moment will leave its mark. The mom said the scene the officers walked into, was similar to something on a reality cop show-- one child reeling from their meltdown & the other running around in nothing but underwear, with two devastated & drained parents at arm's length.

But this is why I insist on talking about difficult subjects-- not only because sometimes we need to see both sides to gain a better understanding, but also because the only thing worse than our absolute toughest days would be feeling as if we're going through them alone.

Please keep the conversation going. And when appropriate please offer support, or even just an ear, to those who need it.

A tad different hearing a knock at the door & seeing a friend on the other side.

Thank you.


Tuesday, January 20, 2015

why all the fuss

It's time for me to preach again. Because here in our little fragile x world (& beyond) we've had some very exciting happenings...

Through recent legislation as well as an (unrelated, albeit awesome) A-lister interview, we have a lot to smile about!

First, on December 19th, 2014 the most significant change in Federal law in decades-- to specifically benefit individuals with disabilities-- became a reality.

Second, on January 13th, 2015 Yahoo news released a very special interview which is already creating just the buzz the community was hoping for.

Part One of the awesomeness technically began nearly 8 years ago, when the National Down Syndrome Society initiated efforts to help people with special needs save for their future. Previously, these individuals would lose all SSI (Supplemental Security Income), Medicaid, & other supports if they accumulated as little as $2,000! It was an archaic law that was well overdue for change-- & furthermore, it also created a disincentive for individuals with special needs to work & be productive members of society.

So long story short in December of 2014, the bill to change all that overwhelmingly passed the House with a vote of 404-17. (Again, nearly eight years in the making!) Our community crossed their fingers & practically held their breath until the news broke that the ABLE Act went on to pass the Senate with a vote of 76-16. (ABLE stands for Achieving a Better Life Experience.) At that point, premature to President Obama officially signing the bill into law, we were already rejoicing in anticipation.

Then on December 19th, 2014, countless communities around the nation received the news they had been working towards & praying for. People living with disabilities now have the right to save for their future... like every other American citizen.

This bill had rare bipartisan support from its inception, & as the CEO of the NFXF said, this is also monumental as "one of the last & most widely-supported bills to pass this session of Congress".

Click here for a thorough explanation of the ABLE Act

And now, for Part Two of the awesomeness...

Through the incredible efforts of a CSN Co-Leader from NY, along with her husband/ NFXF Board Member (who also happens to work for Yahoo).... together they were able to get the ball rolling on setting up a Yahoo News interview with THE Katie Couric.

So one day last year, the idea became a reality at the FX Clinic at the Institute for Basic Research (IBR) on Staten Island. Finally Katie Couric & her team-- or should I say the fx community-- got their interview!

The very morning after the news feature was released, it drove so much traffic to the NFXF site that their servers became overloaded. As I said in my fb post (for those who saw), this level of coverage is not common in our community. And the most crucial take-away, in my opinion, is near the end of the clip after discussing the importance of the research & its critical relation to a whole host of other disorders, Katie asks,

"Why is there not more funding for fragile X?"

To which Dr. Randi Hagerman answers, simply,

"Because the people don't know about it."

Click here to see the interview!

It takes less than ten minutes to watch the video & read the article, but it is rich with information. Please pass it on & encourage others to do the same!


I would just like to add that when I shared these exciting pieces of news with friends & family, I reiterated something very important... 
People say this is the best community that you would never wish to be a part of. But take it from someone who was initially very reluctant to get involved, that once you are, you realize it s simply unparalleled.

A loved one who graciously shared the information with their family & friends as well, sent me a beautiful reply. Here is a portion of that message:

"Exciting developments indeed!  We are all capable of implementing change. Nothing is more rewarding than giving voice to a cause, particularly those involving children, then seeing the profound difference it makes in the lives of others...
Thank you for sharing these landmark events.  We, too, are amongst the greatest groups you never want to be a part of:  autism, Tourette’s Syndrome, bipolar disorder and profound ADHD.  Perhaps we will find a link with our family history of fragile x.
I have shared the information with family and friends.  It takes a village and I am proud to be part of yours!"

Advocacy Day is an annual two-day event organized & hosted by the National Fragile X Foundation. This March will be my 4th time participating.

Advocacy Day helps yield results like the passing of the ABLE Act.

Advocacy Day helps secure funding for the type of research discussed in the Katie Couric interview.

"We have to keep hope. Because without hope, what's the point." - Shari Silver

Please click here to learn more & register to join us for Advocacy Day 2015, on March 3rd & 4th. Anyone. Can. Join.


NJ Residents: Scholarships towards costs associated with Advocacy Day are available to you, courtesy of the New Jersey Fragile X Community Support Group. If you'd like to be considered for a scholarship, please email


Tuesday, December 30, 2014

you're it

One very awesome detail I failed to mention about the night of the 3rd Grade Winter Concert actually happened afterwords, during a chance conversation in the parking lot.

There's a young boy in Hayden's grade-- from a different class-- who has befriended him this year. I had been hearing about J & was finally able to meet him on Halloween.

Side note, speaking of Halloween-- shame on me for not blogging about Hayden's awesomeness in the school parade! And his UPS costume was the biggest hit! Complete with his hand truck of boxes... playfully addressed to all of his favorite dudes from TV:

The Counting Cars box was purposely, prominently displayed at the top to satisfy Hayden's last-minute change of mind. You see, after his UPS "costume" was all set--(it's real, thanks to Aunt Dana who was able to get it from a friend & former coworker--)  Hayden decided he wanted to be Danny instead (from Count's Kustoms).

It was then that I got the idea for Hayden to pretend to be shipping to Danny, & that might be a way to incorporate The Count into H's costume... without having to change his costume. I eventually thought why not just add boxes for all of his favorite guys from TV! Furthermore, the following week or so after Halloween, I emailed Count's Kustoms to share a couple of pics with them. They loved hearing about H's costume & sent him a whole bunch of stuff in the mail! T-shirt, keychains, magnets, tattoos, stickers... the works!

Awesome-est Halloween ever.

So anyway, as I was saying Halloween also allowed me a chance to meet H's new friend J. He is adorable & very sweet. Fast-forward a little more than a month later to the night of the 3rd Grade Winter Concert. W
e're in the parking lot heading back to the car after, & we see Hayden's new friend. Then I noticed who he was walking with & I recognized his mom! Both of us are volunteers on a local Foundation, but neither one of us realized who the other one was.

After a very funny reciprocal exchange of "I didn't know you were his Mom!" ... we were thrilled to have "met" & put the pieces together.

So it turns out that J's birthday was actually coming up. His party was scheduled in just a couple of weeks. The thing is... it is inexplicably important to help shape friendships with H's same-age peers & encourage his inclusion in activities-- particularly ones outside of school-- are immeasurably beneficial to Hayden's growth & development. All birthday parties are a great opportunity for Hayden in general, because he is very social by nature. But at this age there are also fewer of them. So
needless-to-say we were SO EXCITED to get the invite-- especially with this one being a birthday party for his new buddy J.

here are some things I would have to think about ahead of time, though. For example, Hayden tends to eat at atypical times & his meals throughout the day are extremely important for helping to balance his mood (not to mention, getting medication in). But it turns out for this particular party, that wouldn't be all...

I took a closer look at the invite & saw the words: Laser Tag Party.

(Insert imaginary sound of Pac-Man dying.)

Try to imagine how a toddler might react to a dark room, with blinking & glowing lights, very loud sounds, & people who are wearing combat-style gear running around, while aiming dangerous-looking objects at one another. And try to imagine how you would explain to the toddler, that this is just for fun. 

Now imagine that the toddler is the size of a 9 year old, has a tough time with transitions, needs to understand a beginning & an end, how long something will take, & has difficulty regulating sensory input. In other words, they have sensory processing disorder which could range from causing them to overreact, under-react, simply become fixated, or potentially not notice something at all. This also includes difficulty with food textures, by the way.

But never mind the refreshments menu, how would their brain interpret an environment such as laser tag? What behavior might the child exhibit if the environment was just too much? Not to mention how might other kids react to this behavior?

As parents to a very unique child our anxiety was certainly heightened over this one. We didn't know what to do. Bring him? Keep him home? Try to participate for just a portion of the party? Would that be rude? It was also about a half hour away which wasn't helping. Yes it's true for many children with special needs that the more you expose them to, the better their chances for enjoying different situations. But that being said it is equally crucial to approach such situations with close care & careful planning.

Otherwise it could be a complete disaster.

It just so happens that the local Foundation I volunteer with-- which J's mom is also a member of-- usually meets monthly. We had one more meeting coming up for 2014 & it was scheduled during the weeks in between the school concert & J's birthday party. Since I do not know his mom too-too well, I figured that I would just speak to her in person at the next meeting. This way I could explain a little bit about Hayden, & she could perhaps offer insight as far as how the party might be structured. Would it be play, food, & then more play? Or just an hour & a half of play & then food? Was it just laser tag or other activities too? We looked up the facility online & they offered a lot of choices.

That was it-- I was feeling better already-- I would just talk to her when I saw her. That seemed like the best approach & I felt good about it.

Well as luck would have it we got some bad weather & the next Foundation meeting was cancelled. Oddly, at this point, I just thought fuck it. I am going to bring Hayden to that party. He likes this kid, this kid likes my kid, & we liked that kid, too! Shouldn't that be enough? (Of course in the back of my mind I'm thinking what if this doesn't work out... what's worse... coming up with a polite lie to not bring Hayden or Hayden going to the party & potentially _____ ... who knows... it's like fill-in-the-blank. Really.)

I talked about it with my family & votes were tied for bringing him vs not bringing him. So much for that being helpful.

There is one other thing-- hard to explain, but important to mention-- about the lasers. They of course look like guns & are pointed at people the same way. When Hayden is feeling overwhelmed it may turn into being upset or angry or both. One of his unfortunate new habits when this happens involves not only curse words, but also putting his hands together & "appropriately" pointing his fingers to mimic a gun. This is usually accompanied by phrases which Hayden knows have something to do with guns, & what these weapons result in. (Let's just leave it at that.) But the last thing we need is Hayden misinterpreting a game of tag as people acting out in a mean way towards one another.  

I could go on & on about this dilemma but in my heart I really just wanted to allow Hayden an opportunity to have fun with familiar kids. My fears remained present, but that's not what it came down to-- the socialization is. We waited until just a couple days beforehand, if that, to even tell Hayden about the party in the first place. This way he had some time to let it simmer, but not too much time that we would constantly have to explain when it was coming up. 

Hayden was in a good mood when the day of the party arrived & he was so excited for it. Like I said the place was about a half hour away-- not so much because of the mileage but rather due to traveling on several county roads to get there. (We are near a major highway that runs east/west, but not north/south... so those directions sometimes take longer from where we are.) #country

Mind you we are driving through areas with a lot more land than homes & at about half way there when we came to a crossing, Hayden saw a parking lot a short distance away with a whole bunch of cars (it was just a church with a lower roof line). I remember he asked if that was the party-- I'm sure he was wondering where the heck we were going. You have to remember this is a kid from school, so I think Hayden expected we'd be in the car 5 - 10 minutes. I guess they chose this place because we don't really have a similar venue near us. (There are party facilities in the area-- we're not completely in the middle of nowhere-- but no laser tag.)

Hayden was one of the last to arrive at J's party but in this particular instance that was absolutely fine. From the moment he hurried into the party room-- seriously, he was so eager I think he was skipping-- I heard a bunch of kids greet him & I knew we made the right decision.

When it was time to start the laser tag they had to first write their names on little score cards (I didn't realize this at first). J very kindly & patiently went over to H & showed him where to write his name. Hayden proceeded to draw one of the most deliberate & controlled letter H's I have ever seen him make. It was his typical crooked-style & had an extra vertical line... but I'll tell ya right now I don't think I could have possibly been any more proud. I snuck right next to him for a second, told him he did a great job, & said I would plug in the rest (which I did, adding the a-y-d-e-n). J saw me do this, but I don't know that he thought anything of it.

So next up they would gather in the little area outside of the laser tag room where the kids get suited-up, & also instructed.

I waited in the observation room (with the window) with some of the other moms, & Dan went to make sure that H was ready to start. One of the instructors knew to kind of keep an eye on H-- as did J's dad-- so for the most part, he was in there without us for practically the entire first half of laser tag play. If you can make out the one adult & two kids in the pic below, H is the blurry kid-figure on the right (J to his left):

There was a break in between the two sessions & the kids had pizza, which was perfect. For round two some of the dads joined in as well-- H's father included, of course. After the games were done they took a group pic & I don't even know how to put into words how awesome this felt for this mama <3 (Hayden is bottom-left, green top:)

So aside from one tiny thing that happened right before ice cream cake was served, everything was basically perfect. We just had a little moment of (probably) overwhelming-ness catching up with H... & when J was taking a birthday picture with his parents & siblings... our son was sort of photobombing... but not exactly in a cute way. I think Hayden was sort of confused-- may have felt like his participation in the picture was expected of him-- the same way we encouraged him to not run away before the group shot was taken. Not sure. But J & his family were unbelievably cool about it. Could not have been nicer & more understanding.

It all ended well. Hayden didn't really touch his piece of cake, which was completely expected, but he moved it around a little with the fork :). That was still participating as far as I was concerned!

The last activity-- (very busy party--) was video games! At that point we were ready to exit, & so was H, but the birthday boy was beyond thrilled to receive extra tokens that Hayden would not be using. So it was all good!

I did end up getting a cute shot of the two of them :) I am trying to keep this somewhat anonymous so in lieu of actually sharing that photo, I will leave you with a description of an adorable kid, hands in his pockets, wearing a casual closed-mouth smile, standing in front of bright bluish-purple wall, with an enormous "Happy Birthday" sign above his head, & turned slightly towards my son who is standing right next to him.

That is the image I am left with.


Monday, December 8, 2014

stage smile

This blog post has been brewing in my mind since I put my head on my pillow last Thursday evening,  but sharing my update got delayed due to computer issues this weekend. 

Anyway when I went back to review all of the pictures from the 3rd Grade Winter Concert, I came across one in particular which pretty much summed it up for me. 

Two years ago was the first time H was in a school concert, as a first grader. He did well in music class but as soon as they rehearsed in the gym on the risers, his participation regressed. Not that he was necessarily singing along-- or mouthing the words for that matter (even though he knew the songs)-- but at least in music class he was happy & enthusiastic, & participating with some of the movements & a few select words or phrases. 

Therefore that particular year they invited me for one the practice days, because we all knew if H joined the other kids it might only be without the big audience of the concert night. After all, the 1st Grade Spring Concert is actually combined with 2nd Grade so it would be a lot of people. 

I remember arriving at the school for one of the rehearsals & the adorable ladies in the front office kindly hid me in a supply closet (for real), so H would not catch me through the window as the students were walking by. 

Someone had clued me in to the fact that H had already gotten slightly upset & actually threw up a little bit. When the episode subsided, they gave him something to fidget with & he was a little better. 

But long story short, sitting (not standing) on the end of the risers beside his Aide is as far as his participation went that day:
I was not complaining! I didn't even know if he would make it off the gym floor & I was very proud of him for being up there & facing the big room. 

The night of the actual concert we somehow convinced him to get in the car & go to the school-- we said we were only stopping by to watch for a little bit & then we would come home. We were careful not to place any expectations on him. But once we were there, we had a little mini miracle & his Aide just sort of led him on the risers... let go of his hand... & he stood! Here he is clapping to a 2nd grader from the special ed program:

To say I was beaming with pride is a complete understatement. 

2014 was a little bit better-- as a 2nd grader, the concert would be similar to the year before with both combined grades again. Furthermore, 2nd graders actually go on first so less wait time was definitely making things look optimistic. 

And he did it. He stood on the end closest to the exit (for both sets), but he was up there. And he was proud!

He made it through the whole concert! 

One of our main concerns for this year, despite his continued progress, was the timing. Even though the 3rd graders have their own concert, so from a crowd standpoint fewer people would be better, a 7:30 start time on a cold, Thursday night when it's pitch black outside-- not to mention only about an hour shy of when Hayden is usually in bed-- would not be working in our favor. 

However, with his entourage of six (grandparents included) he was a little more motivated & up to the task. We came awfully close to a meltdown though, because he wanted to wear a tie at the last minute & I did not have one. We tried one of Dan's but it looked quite silly because we couldn't match anything up. So we left it on for a couple minutes to hopefully satisfy Hayden since he wasn't letting it go, & then finally (thank goodness) he agreed to remove it. 

His arrival at school was ultimately perfect-- he skipped right in! Literally. 

When they waited in the classroom before it started, though, it was evident he was getting sleepy. He also wore his "tired" throughout most of the concert. 


He was up there-- (completely opposite the exit this year, too--) & he did his thing! 

No stage fright. Nada. 

Stage smile, though? Yes. 

This picture does the rest of the writing for me. This right here is what progress looks like.

At the conclusion of the concert he hugged a couple of the kids near him... shook hands with the music teacher... got an arm around him from the Principal... & last but certainly not least, as students were exiting the building, there were at least a couple of them who stopped to tell Hayden that he did great