Clouds, May 2010

Clouds, May 2010

Tuesday, March 19, 2013

this is what acceptance looks like.

There are two folders in H's backpack: one for first grade class, & the other one is used to send papers back & forth with the special ed teacher.

Today in his first grade folder there was a pink note, folded once over, labeled "open".

I can't picture which classmate this is from... although I could probably figure it out by process of elimination... but I would like to find out who Jocelyn's mom is.

She may already know she is raising a kind, admirable young lady. She may already know she has a thoughtful, mature daughter.

But I doubt she has any clue just how much this means to Hayden's mom.

Friday, March 15, 2013

...The Continued.

After work on Wednesday when I was just about home, I stopped at our mailbox at the bottom of the road. I have been waiting for the April issue of Parents magazine, just in case Hayden's picture really was in there. 

I was apparently one of many who shared their own story in response to their February issue, in which they featured a 3 year old girl on the cover who has spina bifida. Among approximately two dozen other children, we had the pleasure of seeing Hayden's picture in their online slide show but also learned he would be in the magazine as well. (I just wasn't sure if this was definite, considering how many responses they received.)

Here is the link to the online slide show, by the way:

Hayden in the April issue of Parents Magazine

As luck would happen to have it the issue had arrived. And further lucky, it was packaged inside of a protective plastic cover because it had a renewal slip. I anxiously drove up the hill to our driveway so I could stop, park, & tear it open. I sat idle & skimmed the cover but didn't see anything hinting to the story. I flipped through to page 5, glanced through both pages of the Contents & same thing... no mention of the story. I kept going anyway, & finally some time past an Editor's letter, a bunch of ads, & some other stuff... there it was on the page marked 18. Among a Parents-to-Parents section, with a thumbnail of that famous February issue in the corner, there were snapshots of three other children including Hayden.

This was fantastic timing... I mean this was fantastic regardless, but particularly on this day I welcomed the beautiful sight of my child in-print in an actual magazine even more stupendously than on a different day. This was the night of the 1st & 2nd Grade Spring Concert at school, & there was no telling whether or not he would make it there. So in my hands I had something incredible & every aspect of this made me smile... his smile, & the extra fragile x awareness to all those who would see it... both successfully distracting me from the possibility of the Concert.

Anyway, if you've been following my blog & my social media posting, you know the deal surrounding this Concert... & while you know why the rehearsal flop on Monday was simultaneously successful... you also know why the night of the Concert could (or could not) prove to be a very big deal.


So, it was now that Wednesday evening. Although we were still beaming over the magazine fame, after dinner it was time to ask H if he wanted to stop at the school to see the kids sing. We were careful again not to phrase this as an expectation. We said we would just pop in to say hi to his teacher & his aide because they would be there, too. He verbalized that he wanted to stay home.

I don't recall precisely what we said after that, but it was something similar to how we presented the scenario in the first place. We were definitely down-playing the importance of it. I was sure to reiterate that we would be right back... we were only stopping at the school & then coming home.

Then, as casually as we could, we said let's just change you out of your sweater & put on a clean shirt. I grabbed a button down so he must've known I was up to something, & sure enough he kept saying he looked silly. The truth is when there is an occasion to be dressed nice, he typically loves that... but again, we kept telling him we were just stopping at the school to hear the kids sing. So he was probably trying to figure out why he was wearing a button down shirt... which we of course pointed out that he looked very handsome in.

Somehow I got his nicer shoes on him as well-- again, totally out of routine-- & next thing I know he was skipping to the car. He was watching his iPad & just going with the flow.

I commented to Dan how thankful I was for Daylight Savings because it was still light out, & therefore I am certain Hayden would be less focused on the fact that it was getting late. At that time he should have been taking his bath soon & then going to bed, because that would be the typical routine beginning around 7 or 7:30PM.

Instead, around 6:30, the three of us were on our way to the school. Again, everything at this point was so far so good. However when we arrived at the school Hayden didn't want to get out of the truck. Luckily-- I swear, I really don't know how any of this was happening-- he did get out & next thing I know we were inside of the school building.

We approached the regular-ed first grade classroom & the children were beautifully dressed, complimenting one another on their fancy clothes, & sort of moving about in a happy, carefree, & also anxious matter. A little boy who always tends to go out of his way to say hello to Hayden walked up to him, & did just that. That simple exchange of, "Hi Hayden!" & "Hi Ryan!" was quite substantial to all of us. It was a subtle cue to Hayden that he was in the right place & he should be happy to be there.

I was particularly thankful for this warm welcome because his special ed teacher had not yet arrived so her classroom, just next door, was still dark. His aide was running a few minutes late as well. But just as we thought we might lose Hayden to impatience, a classmate from the special ed room arrived. He is somewhat protective over A because she is in a wheelchair & he is inherently empathetic. So this was another person that he would no doubt be glad to see & we needed as many distractions as we could get... distractions from the fact that there would be a significant wait-time until the concert began.

The second graders would open the performance, & then about 20 minutes later the first grade classes would sing, & lastly the Concert would finish with both grades together.

There was still fifteen minutes to go until the second graders would open the Concert.

The children in the regular-ed first grade classroom were now seated & coloring to pass the time. Finally his other teacher & his aide both arrived & helped us distract him. They prompted Hayden to show us the various shamrock projects around the classroom, so we oohed & aahed at the little green buds in the flower pot, & praised his shamrock craft displayed in the window.

When we had finally waited long enough that we thought the first graders would be on their way to the stage, we left the quiet classroom & headed towards the gym. When we came around the corner, we were stopped short by the long line of first graders waiting single-file in the hallway. I was sure we would lose Hayden to his anxiety at this point.

But I was wrong. And so very happy to be wrong. Instead of losing his patience, Hayden went over to the pay phone & began shushing everyone because he was on a call. The teachers were trying to keep the kids quiet anyway so I suppose you could say he was only helping.

At least 5 minutes later, I think more, the second graders finally began exiting the all-purpose room. As the first graders approached the entrance where they would go to the left instead to head down the side hall, Dan & I had an opportunity to separate ourselves from him & sneak into the gym. Well, he made it up to the risers but he resumed his post from the rehearsal two days prior... so he was not standing with the other kids. He was sitting on the lowest step, off to the side, quiet, & watching.

With each song that passed, he still would not stand up. He was just so, so close at this point... we had come so far from Monday morning... I only hoped & wished that Hayden would realize he can do this. But he remained seated off to the side.

Soon it was time for the second graders to join them on stage, & without giving Hayden much of an opportunity to resist, his Aide told him he had to stand up & make room for the other kids. She let go of his hand & walked off. I instinctively wanted to lunge forward & save him, but decided to quickly pull my camera out instead. I had made my way to the very front of the room by this point, & one of his teacher's gave up her first row seat for me.

Next thing I know they helped A towards the stage & Hayden immediately put his arm on the back of her chair. And there he was. Standing. He nervously fidgeted with a button, but he was up there. Amongst both the first & second graders. At the Concert.

I started to cry.

I fumbled with my camera, tried to hold my hands steady, & pressed the power button. And then, my heart completely sunk... because the image that was on the back told me the battery was dead.

I glanced back at Dan, who was amongst the others in the standing-room-only section, & motioned my hand under my chin to communicate it was dead. I held the camera near my face & his expression matched my own. 

With quivering hands I took my phone out of my pocket & captured whatever I could. It has a delay... the lighting is never quite right.. the resolution questionable... etc... etc... but I was desperate. 

It worked.

And here he is, clapping to his pal A... to encourage her participation, too :-)

Every parent in the universe should be so lucky to have a kid like mine. I can't even begin to describe how I feel about his courage, as well as his kindness to others... my pride truly is immeasurable.


Monday, March 11, 2013

to be continued.

When there are circumstances which make Hayden anxious, I noticed he often gets in a sort of survival mode (if you will) until one day things seems to catch up with him. His behavior will become inexplicably difficult, seemingly out of nowhere, until I stop to think about it & realize perhaps the dust just settled. Recent events are finished simmering & he's able to "feel" it all.

Friday evening the school van driver contacted me to tell us that Thursday was her last day... as in the day before. Never mind the fact that no one from the school or the transportation company ever contacted us. That is a whole separate issue. Yes Friday was an unexpected snow day, but here this person who didn't even work for them anymore managed to get in touch with me... so...

Anyway, as far as the now-former van driver... she was not let go. Her husband unfortunately was, so she immediately began to look for a better paying job to compensate for their loss of income. And luckily for them she found a new job rather quickly. I learned that the older gentleman who had been filling in for her when she was out at one point, would resume the route.

He seems nice, & I do like his scally cap by the way, but he doesn't say much. I am not sure what his native language is but based on the way he appears to think intently before speaking, & he sort of extends his right hand like he's trying to find the words but needs a minute... I don't believe he uses English very often.

His accent is thick & when he does speak, Hayden looks as though he doesn't quite understand. The first time he drove Hayden to school he turned the wrong way down the one-way part of our neighborhood & I kept imagining what Hayden was thinking.

This morning Hayden did not touch his sacred breakfast & by the time he had to leave, he said something about "hate concert" & not wanting to go to school.

Today also happens to be rehearsal for the combined 1st & 2nd Grade Concert. (Which he does not actually hate.) I hope that it all works out & Hayden is able to stand up there with the other kids & participate. It's not to say that anything will change if he doesn't, but if he does I know he would enjoy it.

They have been practicing in music class for a number of weeks now, & the actual Concert is taking place on Wednesday evening. The process of getting Hayden back to the school that night, long after he has his dinner & right about the time he should be getting his bath, could present a challenge. So I am glad that he has this rehearsal today, because then he won't feel like he missed the concert if Wednesday doesn't work out.

That too-- the idea of missing it-- would bother him just as much. Especially if he wasn't quite able to "organize" himself to pull through it.

So, here we are. The week of the new driver & his very first school concert.

Last week when the teacher sent home a note that I could be there for the rehearsal, just in case Hayden isn't there Wednesday night, I was initially taken back a bit. I felt that wrath building up inside of me... that almost defensive motherly wrath of protection. How dare they suggest he might not be there! Of course he will be there! We think. We'll try...

When I took a moment to allow my emotions to subside, I felt silly for feeling that way. I felt thankful that they thought of me, & hopeful that this week goes well.

I keep reiterating that detail to myself,
that nothing will change if he doesn't participate. I would never be disappointed. But if he does participate, I just know he would enjoy it.

And oh my goodness his mother would, too-- I would no doubt cry with pride.

(To Be Continued...)

Update One (of Two?)

I arrived at the school just as the kids were entering the all-purpose room, so I scurried into the front office afraid Hayden might spot me.

I was kneeling behind one of the desks & when I saw his teacher I moved to the other side of the cabinets for safety, since they're taller at countertop height.

It was silly but the secretaries were giggling along with me & then we decided I should hide in the closet. We left the door slightly ajar & I waited until the coast was clear.

I peeked around the doorway into the hall & near the back of the all-purpose room I noticed Hayden sitting with his Aide. The concert begins with the second graders, & then the first graders do their songs next, & then both grades sing together. So at that point in time it was perfectly appropriate for Hayden to be seated in the back, because that's where the other first graders were... just sitting, watching the second graders, & waiting for their turn.

But before I went in, one of his teacher's approached me & said he was having a rough morning. He was apparently so anxious over the rehearsal that he had gotten sick earlier. Then when it was time to follow single-file down the halls to the all-purpose room, he was crying. In that moment, the beastly fragile x anxiety was stronger than my first grader. My first grader who loves to be around other kids. Who loves to do things that make people proud of him.

I entered the all-purpose room & sat on the floor beside Hayden & his Aide. He was glad to see me but not quite as glad as he usually is. He seemed withdrawn, but I kissed him near his temple & told him I was there to hear the kids sing. I was careful not to phrase my visit as an expectation being placed on him.

When it was time for the first graders to assemble on the risers, he became upset again. It was probably an additional confusion to him that they weren't just walking up to the stage... but rather exiting the room to go around & enter from the kitchen. In other words, to properly enter in true dress-rehearsal fashion, which in this case was stage right. I am sure walking through there & smelling lunch cooking, which would begin following rehearsal, was not helping his anxiety-nausea one bit.

Ultimately his Aide was able to lead him to the very edge of the risers & that is where they sat. He was up there, but never actually stood with the others. I saw her whispering some of the songs in his ear & he sat beside her a bit sullen-faced, but calmer.

That was as far as he got but I know that was a substantial accomplishment, especially considering where they started this morning. As far as Wednesday, we will play it by ear.

I know I have had a number of years to let this diagnosis simmer, & I know H is a fantastic kid. But some days I positively hate fragile x & truthfully wish this damn syndrome simply didn't exist.

We're going to fight you. Do you know that? Hayden still made it up to the front of the room with the other kids. You're never going to win, fragile x. Even if Hayden never sings in a concert, although I believe he will, it doesn't change the fact that we are growing stronger than you... because you, fragile x, are breakable by name. For us, there is always next time. For you, there is only a cure in your future.
Even if it's not on Wednesday, this will be continued. 

Friday, March 8, 2013

snow day

Snow day today.

Dan & I are both working from home & Hayden is... not working from home. I'm on break because I can't log in to the server while the power is out at our office. But the power is not out over here & my social media "newsfeed", full of other snowbound families, got me thinking...

Most of the kids will spend their morning in pajamas & by the afternoon they'll build snowmen, & the images to follow will be chocolate-mustache smiling faces with tiny hands cupped around mugs of hot cocoa.

But Hayden won't stay in his PJs too long because he likes to get dressed by a certain time, because that is routine. And so are his meals.

So before I even logged in for the day (at the time I was able to), I started on Hayden's breakfast. He was impatiently-- albeit politely if you know what I mean-- repeating, "me hungry today". (Impatient for repeating but polite for not having a meltdown.)

I suspected this would happen because he didn't have enough dinner last night even though I tried making him two different ones, a couple of hours apart.

Every morning he usually eats his spinach & cheese omelet with a whole bunch of other stuff. This morning we slept just slightly later due to the snow delay-turned-cancellation, so by the time I got to preparing his breakfast I was taking shortcuts with it.

Such as, extra of the whole bunch of other stuff that goes on his breakfast plate. Those are the parts of his meal which go right in the toaster & do not require stove-standing. But to no one's surprise he asked for his eggs so I had to make them anyway.

That didn't change the fact that I didn't feel like digging the chopped spinach out of the freezer, defrosting a portion for him, whisking it into his eggs with just the right amount of whites vs yolk but not too much yolk, & waiting until the perfect moment during its cooking time to melt just the right about of his favorite finely shredded cheese in, & then cutting it up as I do, & strategically placing the pieces on his plate cheesy-side-up so the eggs shouldn't look too green... & all this while timing the toaster oven stuff to be ready & warm but not hot at the same moment.

I just felt... really? Can't we skip the spinach part today? I know it is particularly important for someone with a diet of such limited food choices due to sensory issues, to consume nutritional balance when we can get it in him... but my desire to have an easy-going day was overriding my typical guilt. When I might normally feel bad should I even think about taking a shortcut with his breakfast, today I could only think about taking a shortcut with his breakfast.

Heck, I didn't even do up the bacon & I could almost gasp at my own satisfaction that he forgot to ask for it.

I shouldn't be surprised, but I am, that during my daily stove-standing I watched his eggs cook & somehow involuntarily grabbed the chopped spinach from the freezer. My bare hands began crumbling the frozen chunks while my fingers turned pink from handling it & next thing I knew, his daily eggs were adorned with the usual green confetti. I was both annoyed & pleased that the spinach omelet won & I lost.

Well, I guess because it was an add-on, the spinach in the eggs didn't look as it normally would... or something. I presented the resident Prince with his breakfast plate & he immediately said, "Want green!"
I said, "There is spinach, look!"
He replied, while pretending to pinch his nose, "Me hate yellow! Eeew!"

I sort of walked away at that point in an attempt to hide any pride on my face. I shouldn't want him to confuse his good-nutrition choice as praise for speaking so silly.

I thought about the fact that applesauce used to be a reliable, daily staple for so many years & even that has turned into hit or miss (with a bit of emphasis on the miss). And before that, he consistently found comfort in drinking his milk until one day we were so desperate to get medicine in him when he was very sick... and you can guess what happened but to make a short story shorter, he wouldn't go near the stuff for years. To this day he will rarely ever drink milk, or anything besides water for that matter.

The other day I was shopping & overheard a mom speaking to her son-- they were right behind me & he was pleading for a fun-looking jug of juice. She proceeded to read the ingredients to him, & about half way (I imagine) she said, "still nothing in here about fruit juice." The child appeared to be the same age as Hayden.

I witness stuff like that all the time, even in the media (social or not)-- such as the Mayor in NY & his soda theory. I don't lean towards carbonated beverages myself because I prefer flat ones so I couldn't care less. Plus I'm from Jersey & I have my own theory it's not the tap behind a bar which we're really interested in.

Since I can not relate to parenting a typical chocolate-milk-chugging, juice-drink-begging, bowl-of-cereal-&-milk-slurping, lollipop-sucking kid... I won't soon be giving my son a lesson about ingredients. (Which, incidentally, I know my fair share about since I have a wee bit of experience proofing nutrition labeling.)

Yes, even the lollipop factor is a true story. As true as the fact that a single bite of a chocolate bar has never touched his lips. Although he will eat just a couple types of doughnuts, as well as very simple cookies which mimic tea biscuits... out of the seven birthday cakes that have been ordered for him in his life, so far he has yet to enjoy a bite from a single one. I know there are many people who never even realized this.

Hayden is already in his jeans (his preferred pants) & has been for a while now. He will be happy to "help" us shovel later, but lacks the interest in building a snowman (or watching someone else do it, for that matter). Dan has tried many times, & Hayden will knock it over not realizing the outcome or perhaps how long it will take for the finished outcome. There does not exist a single picture of this child beside a snowman. And the only drink he will want when we come back inside from shoveling & not making a snowman, is his usual ice water.

There are simple moments every day which remind me of our unique parenting experience, with our unique Hayden. Even moments on a simple snow day.

It should be noted by the way, that before I even finished this blog entry he did ask for the bacon after all. Which no doubt reminded his belly that it's ready for lunch. And chances are the server at work will be up & running by the time I finish preparing his lunch, & then the snow will let up & it will be time for shoveling...

Your snow day ingredients might be pajamas, perhaps a late breakfast for lunch, maybe followed by snowmen, some snowball fights, & cups of hot cocoa with mini marshmallows.

Our ingredients however, will contain as many of the same ones as we can incorporate on a non-snow day. And don't be surprised if the only picture I share later is of Hayden beside a snow shovel.

I suppose that's just his version of a snowman.