Clouds, May 2010

Clouds, May 2010

Thursday, December 29, 2011

a very hayden chrismukah

The holiday season kicked off with the first nights of Chanukah, followed by a visit from Santa that same week. He arrived on a firetruck direct from the local engine company. I am guessing Hayden vaguely remembered from last year, which was the first year that we made an Operation Santa donation to have Hayden added to the Santa visit list. I believe he remembered because before it even happened, he was asking questions and talking about a firetruck and Santa... and well, it's just too much of a coincidence. He may have heard other children talking at school, but I know his memory and I bet it was in there.

The rumble of the engine and the whirl of the siren crept up our street, followed by the wide glow of the lights and the additional blinking decorations adorning the truck. Then, around the bend, the truck itself climbed the road as if following its own introduction.

Hayden was initially unsure and borderline nervous (rightfully so, because he knows what firetrucks are for)-- and then I knelt in front of him and offered my curiosity and excitement. Once he saw Santa, there was a lot of screaming and jumping and cheering and "Thank you! Thank you! Thank you!" I could barely hear a thing by the time the quick visit was all over, but that lingering and beaming smile on Hayden's face was perfect.

He tore open a small gift (which of course, unbeknownst to him, we provided ahead of time) and absolutely loved it like it was the best thing in the world.

I'm sure the nightly Chanukah gift helped to keep momentum going. By the second or third night, when I recited the baruchah and got to the last part "...l'chad liknair, shel..." Hayden appropriately concluded, "Chanukah!" on cue. (Mainly pronounced "honkah").

However, it took a couple more nights to explain that we don't blow the candles out because it's not a birthday.

For every night, as soon as it got dark out or he smelled dinner cooking (which ever came first), he "reminded" me about Honkah. This year's Christmas arrival was a little bit confusing because typically Chanukah is complete by the 25th. But it was nice having another couple nights to slowly ween him out of the holiday excitement with a few lingering gifts.

He spent weeks talking about having Honkah and hanging stockings from the fireplace-- which, following Christmas morning, he was ready to take them down. (Visual cue of task completed.)

Christmas Eve we celebrated Chanukah with cousin Flora. They continue to interact absolutely adorable together. The winner gift that evening was from Aunt Jenna and Uncle Daniel-- a tall-as Hayden gas pump! He also got an ever-amazing iPad from Grandma & Poppy, to carry over use of Apps that his S.T. has been working on with him at school.

Christmas morning came and for some reason H woke up sick, but I think the build-up of anticipation may have gone right to his stomach. He just got sick the one time, and that was it. (The following morning his body decided on a random nosebleed instead.)

Last year for Christmas breakfast at Aunt Dana's, Hayden only wanted to bring his new (at the time) guitar. This year it was a simple Cars2 pad and pen set, which he carried everywhere. Until he opened the gift of all gifts from Grandma & Grandpa...
A Cadillac pick-up truck towing a trailer with a red & white speedboat on it.

Later that afternoon Christmas concluded at Dan's aunt's house. Less chaotic than you would think everyone enjoyed the obscenely generous spread of Italian food. After the feast, we even got all fourteen cousins lined up on the couch for the "19 & under" pic (3 are new to the family, by aunt Dana's second marriage... though 11 is a steep number in itself). 

The following day (yes, there's more) we met at Grandma Suzi and Poppa Z's house to visit with cousins who were down from Maine. And celebrate some more Chanukah, of course.

The very next evening, Hayden had a sleepover at Grandma & Grandpa's house (with cousin Kaityn), so Dan & I could work on Wednesday.

It's been a whirlwind of a winter break... New Year's will likely be a lot calmer. Possibly another sleepover, this time at Grandma & Poppy's. We'll see.

But for someone who is quite prone to anxiety, and has a prevalence of "colorful" behaviors (to the fault of that fragile x of course)... He has been gliding through all the festivities like a pro mingler.

He knows how to have fun, our little big guy. Delete that from the list of things to teach him.

Friday, December 9, 2011

flashback to hayden's 1st holiday

I was looking at these pictures after I created our 2011 holiday card online. Hayden was six months and this was his first holiday season back in 2005. He was an adorable baby (needless to say) with the best edible cheeks and a smile that was not to be believed unless you saw it for yourself.

Speaking of that smile in the picture with the red sweater, you wouldn't know it but his Aunt Jenna was supporting him as he laughed and played with her. If she let go, he would have lost his balance because he had not yet developed enough trunk strength to support his torso. This would have been the only early sign of FXS if there was any, but even at that it was incredibly subtle.

I look at the other pictures and I see an infant playing with a toy (at least it looks that way), and I also see an infant making eye contact. Even knowing what I know now, I would not think anything at all was different about the incredibly adorable baby in these pictures.

Another two months passed before Dan & I really began to wonder about Hayden's developmental delays (though our focus was temporarily sidetracked when he contracted RSV). At the time these photos were taken, 11 months would come and go before we ever heard of Fragile X Syndrome.

As much as these pictures make me emotional sometimes, I do find significant comfort and hope when I focus on just how far Hayden has come. And how easy it still is to make him laugh.

Wednesday, December 7, 2011

acceptance is contagious

To me, the most unsettling factor of yesterday's vaccination was a young kid I noticed in the waiting room at the pediatrician's office. He was about ten years old, quietly waiting for his sister and mom who were in with the doctor.

He repeatedly turned around when Hayden spoke. The other people in the waiting room may have been throwing glances, but this boy had to turn around in his chair to look. 

There was another toddler in the waiting room-- he was babbling up a storm and dancing around and prompting smiles from the other patients in the room. I was relieved when Hayden's name was called.

Before we left the house to go to the doctor, Hayden knew something was up but didn't know what. I told him we were going to the doctor so he could get a dot of medicine on his arm so he would not get sick this winter. I told him all of the kindergarteners get the same kind, and it was his turn. I said we need a piece of paper for the school nurse, and after he got his dot we'd get the paper.

He went to the bathroom twice before we left, again in the car on the way over, and then once more before we made it out of the doctor's office. Truth be told that four poops, two shots, a couple stickers, and six doughnut holes later... he was fine. Anxiety over.

As soon as we got in the car and his crying calmed enough that the first doughnut hole went in his mouth, he said, "mmm these good" 

My guy. My brave guy who didn't even notice the young boy who kept turning to look at him when he spoke. Because his language sounds different-- much like that of the toddler who was performing around the room. Except Hayden is almost 6 1/2.

Interestingly enough, today I learned about a blog post from a fellow parent of a child with FXS (via facebook). She was upset about something she witnessed at her daughter's daycare (rightfully so). She noticed the other kids who would stop what they were doing, put away what they were playing with, and move on to something else if they saw her daughter approaching. Just because her sweet daughter happens to have fragile x syndrome, and autism, and responds differently than other kids.

Several other parents of children with fxs copied the link to this woman's blog and posted it on facebook:
The Good: not me, Not Me, NOT ME

This inspired me to share the following post on my own page:

"Inspired to speak up based on a blog post by a fellow parent of a child with FXS (& on behalf of any human being who has ever been excluded):

If the average child stares at someone who is different from them & the parent says, 'It's not polite to stare'-- that parent is not seeing the larger picture. Their intentions may be good, but this is an inadequate way to teach your child acceptance. Regardless if your child is a kid or an adult, you are the parent. Acceptance begins with you.

In the same respect, if you’re an older sibling or cousin… think of who is looking up to you. What are they really seeing?

You owe it to the younger generation to take responsibility, to allow them to understand that this universe is made up of all kinds of different people. They can learn from you, more than anyone else in their life, that differences are not only OK but they're a normal part of existence."

I am quite honored that a fellow NJ parent-- whose name you will recognize if you're part of the FX community-- also shared my post:
Paula's Place -

Please consider sharing the idea of acceptance with others you know.
I can only hope one day that young boy in the waiting room is lucky enough to embrace the differences around him, and smile.

In the meantime, I'll continue to appreciate the one that beams across Hayden's face on a regular basis.

Tuesday, December 6, 2011

Hayden, MD

Not in the medical doctor sense.

Hayden's classification is MD, for multiply disabled. Every student with an IEP (Individualized Education Plan) has a category based on diagnosis and/or challenges.

It was recently brought to our attention that the district is implementing an MD program for children like Hayden, and he is one of the students they have in mind for this particular program. At the time of our recent meeting, the case manager did not have any additional information available.

We know the program is supposed to begin early 2012, and we know that they're probably going to use a former first grade classroom that is not filled due to lower enrollment. We do not know if this MD program will replace the time he spends in the LLD room in the morning. Currently his day is split between the Language Learning Disabled self-contained classroom in the morning, and in the afternoon he is included with the kindergarteners.

Both his AM & PM teachers know him very well, and they are fantastic with him (to say the least). We are concerned about the details of this program, the transition, and what this means for Hayden on a daily basis moving forward. It's unsettling and all I can do at this point, is pray that in the long run it is for the better. According to his kindergarten teacher, it should be if this is implemented well.


However, we did agree that we would continue to meet every four weeks or at least have a conference call. I would like to inquire about this MD program again, and see if any more information is available. Conveniently, the (new as of this school year) outsourced case manager is only contracted for three days a week. I had too much going on the past two days to get a hold of her before she left for the day (at work we are crunched to get end-of-month billing processed for November, and the deadline was today). I understand the case manager is not back in the office until Friday. Tomorrow I hope to get in contact with the education consultant that sort of oversees everything. 

In other news, Hayden had several fantastic days recently. Saturday we had a long drive down to PA to see a college friend of mine. Shortly after we arrived, their new baby boy woke up from his nap and Hayden sat to hold the baby. It didn't take long for him to initiate play with the baby's older sisters (both younger than H), either-- they have met before but it's been at least a year and a half, since. Hayden and the two girls played very well together.

Sunday we had another drive (not as long) to go to my friend's daughter's baptism. Hayden talked a bit during the church portion, but overall he did so well I was nothing short of impressed. After church there was a reception at a nearby restaurant and H held out for nearly the entire length of the dinner. He pooped twice which was a serious pain for us, but his behavior was good and I will take poop over bad behavior any day.

Then, yesterday after school when I asked him how his day was or what he did he actually answered me! He told me his teacher's son came to class and wrote her name on the board. The teacher confirmed that did in fact happen! I LOVE that he can tell me bits and pieces about his day.

This afternoon we are leaving shortly so he can get his kindergarten vaccinations. Less than a week ago, the school was audited by the state and Hayden's name was pulled for not having up-to-date shots. I have doughnut holes in my purse and fingers crossed...