let's talk about x

Now that the students are about four weeks into the new school year-- settled but not too settled-- I felt it was an appropriate time to have my 2nd annual FX chat with H's classmates.

The case manager cleared a date & time with H's teacher, & it was set. Last year I brought a fire truck with me (thank you Holly for the idea if you see this), & focused on "different" still being fun. So for example, you might look at the fire truck & expect all of those siren noises & flashing lights... but if you take the batteries out it is still a truck & it is still fun to play with. 

I also talked about how Hayden might notice very small details & also get distracted by little noises, or certain smells, & so forth... kind of like "Spidey" senses (I forget which mom to thank for this one— possibly Melissa? :) thank you...)

It was not only a great class last year because there were so many kids in the same room who knew H from kindergarten (just the luck of the draw), but also because they happened to be a very friendly, accepting, outgoing bunch of kids. One girl raised her hand to explain that her grandma can't always hear her, & another boy said he saw applesauce on Hayden's shirt. But the reason why these things are important, are because they just know Hayden to be Hayden & he's not (at all) some kid who is different to them. Like his speech therapist said, if their take-away is that he's messy then that's pretty fantastic. She is right because of all the things they could notice, well...

That brings me to my topic of focus for this year.

I wanted to discuss certain things we can't see, & things they have in common. I opened the discussion by talking about a person on crutches... I said if we saw a person on crutches, we would understand why they have a tough time walking. But what if we saw someone with a limp & they didn't have crutches, then we couldn't tell just by looking at them why they might be limping. So a little girl raised her hand & said that maybe the person hurt their foot.

I said Hayden has something that we can't see either. This is important to bring up, because by this age I’m thinking they no doubt notice something is different. But it must be confusing as hell to understand what it is... he looks just like them, but there are definitely characteristics of H which are unexpected.

I told them Hayden has something called Fragile X but he's not sick, & no one can catch it because it's not like a cold. It's just something he was born with but he's still a happy, healthy kid just like them.

Then I asked if they've noticed anything different about Hayden, but I also offered to go first (I don't think it's easy to raise your hand in response to a question like that). So I said they've probably noticed that Hayden's words sound different, but it's not because there's anything different about his mouth. I went on to say that some kids learn things very fast & some kids learn the same things, later. Each of us can do stuff when we're ready, but not before (thank you Franklin the turtle!)

The same little girl raised her hand again but she paused for a bit, so I smiled & told her it's OK & the teacher encouraged her to speak as well. So she finally said something about... still trying to figure out what he is saying most of the time. I nodded & agreed with her, & said it's great that she tries to listen. Then I added that maybe they've noticed sometimes he is very active & moving a lot. But again, this is not because there's anything different about his arms or legs.

However, Hayden might either be excited over something or just ready for something to be finished... but either way, waiting can make him jumpy. Then I asked them what are some things they like to do at school, & nearly every answer had to do with working together, or playing at recess, but overall being with their friends.

I reiterated how much Hayden likes seeing all of them every day, & that he also likes when other people are happy to see him too.

Then I asked them what are some things they like to do at home when they're playing outside, & many kids raised their hand & said they like playing with their neighbors. Hayden knows some of the kids in our neighborhood, too, so I said he likes that as well. One kid said his neighbor has a trampoline in their yard, & I said those are great & Hayden has one, too!

There was not one thing that anyone said, which I couldn't follow up with "Hayden likes that too" or "Hayden does that too"...

So then I asked them what are some things they like to do at home when they're not outside, & many kids raised their hand & said TV, movies, video games, & one girl said playing cards. So I said that Hayden likes watching TV too, & although he doesn't play video games he does like to play on his iPad.

In this year's talk as well as last year's, I told them that Hayden not only learns from his teachers but also he learns from them when they make good choices (another nod to a fellow FX parent). And that even when it seems like he's not looking at them the same way we look at each other, he is still listening & paying attention.

I also brought the book with me again, "Special People, Special Ways", & this year the kids commented on its rhyming message which they seemed to enjoy.

Last year I handed out stickers when I was done, but this year I had them wrapped in little cello tubes with a Halloween pencil. And once again I asked the teacher to send my flyer home in the student's folders:

Next year is 3^rd grade & all (gulp) so I’m thinking my little chat will really be discussion-driven at that point. Ideally the kids will almost take over for me as the years go on. All I know is that when I was a kid if someone was different we were rarely, if ever, told why. I don’t remember being encouraged to include others. It saddens me to think that we often kept our distance simply because no one told us otherwise. I never want a kid to look at H & be confused, although I know that’s a tough one to prevent… but at the very least I want them to know (1) it’s OK to interact with him, (2) they should interact with him  & (3) let them get to know him, so they know how to interact with him.

It is true you can not just catch fragile X like a cold, but it wouldn't be so terrible if some of the characteristics were actually contagious... such as the fact that H does not judge others & he assumes the best in them.

Which is exactly what he deserves in return. Maybe that's really all I need to say.

---

fasten your seat belt

About a week ago, on one completely unassuming morning, I was waiting for the van driver to bring H back home. Yes, you read that correctly. I was waiting for Hayden to arrive back home, a short while after he had been picked up to go to school. I would then have to finish getting ready & take him there myself, which would inevitably make me late for work.

So I actually had to sit down & send an email to my boss that morning, explaining why I would not be at the office on time.

Because minutes after H left for school that morning, I was just about to get in the shower when the phone rang. The driver proceeded to tell me that she had to pull over. Apparently Hayden took his seat belt off & would not stay seated. They had not even reached the main road yet, so basically the van was stopped near the foot of our neighborhood which is about a mile away from our house.

Unable to keep going or even turn around since he wasn't buckled in (& obviously wouldn't let her buckle him in), they were basically stuck. She left a message for her boss & was awaiting approval to bring him back home.

There were endless concerns running through my mind at that point...

...so now what? What the hell am I supposed to do? How long are they going to sit there? I'm going down there... am I allowed to go down there? Does she really have to wait to talk to her boss before she can turn around? WTF... What if this keeps happening? He already has a one-on-one Aide when he's in school & now he's going to need one just to get there?! Oh, gosh... I do not even want to begin advocating for that... Oh shit... I need to text his Aide so she knows he's going to be late... What time is it anyway? Well that's great... Now his whole day is going to be thrown off... I can't keep him home... I have to get to work... This sucks I didn't even shower yet & it is already getting so late... His entire schedule today is really going to set him off on the wrong foot at this point... Can I just drive down the hill to go get him myself? Would he even get out of the van? I would have to drive him back to the house though... He would definitely freak out... he would want to go straight to school... I can't drive him to school like this... I have to walk him inside...then I'd have to come back home anyway to get ready for work... I really don't have time for this... Friggin nerve wrecking... are they really just sitting there? Still?!


When the van pulled back in our driveway however many minutes later-- I am not even sure-- there was Hayden of course sitting very calmly in his seat. I am guessing his sudden change in behavior was some sort of defense mechanism. But now that my nerves were slightly settled as he returned home, my only mission was to finish getting ready & get the hell out of the house in record time.

It wasn't until we were finally on our way to the school when the man from the transportation company called (i.e., the driver's boss). He was very anxious & concerned, claiming that the school told him, that I saw the van pulled over on the side of the road with Hayden still inside the vehicle. After I clarified this dangerously misleading statement, & reiterated that I was the one who insisted the van driver bring Hayden home instead of them just sitting there as more & more time passed... I felt like choking someone.

How far back do I go? Because last year was the first year that this transportation company became part of the equation. Prior to that-- for years & years prior to that-- the district used a different transportation company & it was always the same driver. Did we ever have any difficulties before? Yes. Have there been more since this then? Absolutely. Let's start with the fact that Hayden used to get attendance awards up until last year, & after that the only consistency was his tardiness.

Or maybe I should choke the people who accepted the bid from this transportation company? Do I blame them? Because if I am going to blame them, then I ought to blame the Governor. Isn't he the one that started the budget cuts which cost us things like... a Child Study Team (which is now outsourced, & every friggin year we have a new friggin case manager)...

Or do I blame Hayden's special needs? Because if it weren't for his special needs then how could I be affected by any of these exhausting, frustrating circumstances?

Later that day when he arrived home after school, do you want to know what the driver said to me? Well I'll tell you anyway. She picked up a little square-shaped plastic piece for me to see, & said they used it on the way home & that it worked like a charm.

I realized it was something which would prevent him from unbuckling his seat belt. "How do you get it off?" I asked.

"Well I just used a pen," she said, "but I'll need something better."

"Oh, so it can't even come off without using something like that? What if heaven forbid there's an accident?"

She didn't answer right away but I continued, "I just need to think about this & figure out the best way to handle it. I obviously want him to be safe & worry about him not being seated & buckled in, but now I don't know what worries me more..."

That Monday when he was picked up, she showed me that in case of emergency she has a seat belt cutter. I didn't really get a good look at it but I saw it near the steering wheel. Is it even realistic that just anyone would know what that was?

I think it's obvious to say that none of this was making me feel any better. It's been about a week since the incident & so far just the threat of that little plastic piece seems to be keeping him well-behaved, but that's probably not healthy either.

And there I go again wanting to choke someone. (I should probably avoid mirrors).

But alas that is not what happened. Instead I spent the week focusing on the next thing... preparing for my 2nd annual FX talk with Hayden's classmates.

Summary blog to follow soon...

---

"you late"

Have you heard about this one?

Coca-Cola, the makers & distributors of Vitamin Water, had a recent promotion which involved bilingual word-play on the inside of their bottle caps. One such word combination did not fare so well & actually printed with "YOU RETARD" under the cap.

Just to quote the explanation offered by news coverage:

"Representatives for Coca-Cola have since stated that the language inside of the cap was the product of a competition pairing one random English word with a second random French word. In French, 'retard' means 'late' or 'delayed'. 'The word's English connotation was missed during the review process,' said a spokesperson"

A bottle of the Vitamin Water Zero displaying the words "YOU RETARD", was opened by a young lady from Canada, who happens to have a sister with cerebral palsy & autism.

Click here to read an article about the offensive bottle cap.

Naturally the father of the young lady who discovered this bottle cap, composed a complaint letter to Coca-Cola-- including a pledge to boycott their products for life.

So far, Coca-Cola has issued an apology directly to the family & according to online articles, they are also posting an apology via social media.
Well then, I guess we can all move on now. Thank you, Coca-Cola, for issuing a statement & an online apology via Facebook & Twitter.


The thing is I actually understand quite a fair amount about quality control, & the workflow involved in releasing & printing shelf-ready artwork. For nearly ten years I have been part of a global company which specializes in packaging (among other areas of production). Furthermore, for the majority of those ten years I had direct involvement in quality control.

Although Coca-Cola is not one of the brands I worked on, let alone Vitamin Water specifically, it easily could have been. I mean literally-- because there are other divisions of our company under which Coca-Cola has been a client. 

(Just a side note, none of our locations had any involvement whatsoever in the production of these Vitamin Water bottles or bottle caps.)

The American public-- & Canadian public for that matter-- are well aware you are not the first company to make a colossal mistake, & you will not be the last.

I understand your claim about the French meaning of the word "retard". Yes, this word pertains to lateness, delay, hindrance, hitch, hold up, or lag.

I have a serious problem with the fact that you issued a statement to explain how "YOU RETARD" was "missed during the review process".
This is what you have offered to the family of the young lady who discovered the bottle cap? An apology, an explanation of the production process, & the reassurance that this was a mistake during the review process?

Even if all parties involved in your "review process" were not thinking about the bottle cap phrase outside of its French context, this still doesn't make sense because it's not grammatically correct. Regardless, I just don't believe you because there are too many check points involved.

Please. Over the years I have proofed everything from shipping containers down to the individual foils that chocolate pieces are wrapped in. I have checked every space, every period, every dotted "i", every apostrophe, & every comma.  

The parties involved who obviously threw a blind eye to this, at least need to own up to the mistake. Please spare us from further insult by claiming it was a genuine oversight.

I guarantee there must have been people involved in the production process who thought this was funny. Would you have issued the same apology if the bottle cap said "YOU NIGGER" or "YOU PUSSY"? I can just guess your hypothetical excuse on the latter.

I have a much better idea than issuing an apologetic statement.
How about a different idea for a new promotion? How about designing bottle wraps to support Autism Speaks^®? Or MyChild^TM of CerebralPalsy.org? Out of respect for the Loates family out of Alberta, Canada, those would be my initial suggestions.

On a more personal note, there are also organizations which support education & research funding for Fragile X Syndrome (FXS)... such as the NFXF (National FX Foundation) or FRAXA (Fragile X Research Foundation)....

Fragile X is the most common inherited form of intellectual impairment & the number one known cause of autism. Approximately one million Americans carry Fragile X, or are at risk for developing a Fragile X-associated Disorder. The research within the FX community even has the potential to benefit people affected by Parkinson's Disease. Furthermore, the gene & protein responsible for causing FXS is not only a leading candidate in the search for the causes of autism... but schizophrenia as well.

You could do a whole friggin campaign (pardon my French) using the NFXF or FRAXA logos... they're colorful & attention-grabbing... really... let me know.

I can put you in touch with the right people to make it happen. Just saying.

We could even go bilingual with this.  

 
--

sorry for laughing

So here I am at 10PM on a school/ work night, folding the umpteenth load of laundry this week, & trying to figure out how many pairs of pants H has that currently fit him.

At least twice a year he gets stuck in between sizes when the smaller pants are just too short, & the next size pants nearly fall as he walks. Sometimes I find slim fits that hold him over for a few months, but I hesitate to buy too many because they will not fit him for very long.

But the backup pairs of pants are particularly inevitable during the school year, because the last thing a parent of a child with specials needs wants to be... is unprepared. Yes my child is 8 & yes I make sure that he has backup clothing at school-- including underwear, pants, & there is a spare shirt in his backpack every day as well.* He is sometimes just plain clumsy, or perhaps unable to communicate if he has a stomach ache, or as the Aide sometimes writes on the plastic bag: "bad aim". Whether he trips during recess, gets carried away washing his hands because he loves playing with water, or gets applesauce down his shirt because he is not paying attention, or like today when there is clearly something funky going on with his poor tummy... we are prepared to ensure Hayden is clean, comfortable, & presentable.

(*By the way I'm a tad sensitive about this kind of stuff, so just a side note... if you're not mature enough to handle this information, or it's the only thing you're going to take away from my blog because you're judgemental, then please do us both a favor & move on to the next one. Seriously, click the button at the top that says "Next Blog>>" )

For the rest of you who get my point about the pants, as you were...


So yes, I am counting pants & figuring out which ones should go back to school. But I soon realize there are definitely a pair or two missing. I check the washing machine & dryer once more, & then wonder if they're already in his closet. And because I am a crazy person & I simply can not let this go until the morning, I make the stupid decision to sneak into my peacefully sleeping son's room.

One thing you should know about H getting to the point that he is actually peacefully sleeping, is that prior to that we usually have the battle of the iPad. Trust me I could write a whole chapter on methods for correcting difficult behaviors, especially in children with special needs... yet we still have no shortage of these struggles.

One consistent part of our routine is giving him a 10 minute warning before lights must be completely out. Tonight was just like many other nights, & when those 10 minutes were up he was pretty angry. But also like many other nights, before long he was asleep anyway. 

So, back to breaking & entering into the sleeping child's room...

By the glow of a nightlight I carefully open his closet & begin surveying the jeans situation. I suddenly hear H take a short breath & realize I startled him.

Aside from the cursing rant in my own head because he was definitely in a deep sleep just seconds ago, I start to say, "Ssh, it's Ok-" but before I can even get the words out...

Hayden sits up, forcefully throws his right arm in the air, points towards the door with an open hand, & exclaims, "ten minutes!"

Poor kid. Even in his sleep he is thinking of that damn iPad.

--

hayden's shed

H & Pop Z spent a greater part of the summer building a shed.

They literally worked through some days of record-breaking heat & even rain. But Hayden loved learning how to use new tools & Pop Z loved spending time with his #1 guy.

However, we never really had a big reveal because H was involved in the process from the beginning. Still he was very happy to have all of his things in there-- a tractor, 2 lawn movers, leaf blower, shopping cart, wheelbarrow, hand truck, gas pump, bike, snow shovel, etc.

...& today we added his old tool bench which had been collecting dust in the basement.

So while he was out of the house, I had about an hour to begin the makeover. I cleaned his old table, put the chairs in, put up some cars pictures, a few feet of racetrack wall decals, & then got the camera ready for the big reveal:

(Pardon the few inappropriate words... he literally can not control his language sometimes when he is very excited... one of the many side effects of FX...but he was genuinely very happy)

Click the blue link to see his reaction :-)


Hayden's Shed


--

cheat sheet

Consider this blog post the CliffsNotes version of back-to-school info...

(Btw, any links in this post will automatically open in a separate window so you will not lose your place :) )

If you have a child with an IEP or 504 Plan & the new school year also means new teachers & new classmates, at least some portion of this will likely be very helpful to you.

My first suggestion would be to listen to the webinar hosted by two LINKS Leaders (& moms) from the National Fragile X Foundation (NFXF)... it's called "Let's Talk!" & they cover many helpful strategies for any age student.

For even more information, you can also view the NFXF Back to School Online Tool Kit

Under the Contents header of the Online Tool Kit, you'll notice the very first section is titled "Positive Student Profile". Here is an example of one of these handy cheat sheets for anyone who works with your kid, to have:

At back-to-school time, following the lead of other parents in the FX community, the top 3 things I have found to be most beneficial are:

1. Scheduling an FX Talk during a teacher in-service day... just an informal chat with faculty to educate the educators, if you will. Even teachers have a lot to learn from us because we know our child best.

2. Distributing a Positive Student Profile of your child, to anyone who works with them... because we all love cheat sheets, & teachers especially have a lot of student faces & names to remember! You should either hand these out at your FX talk, or distribute them soon after (for example, put one in the appropriate faculty member's mailboxes).

3. Speaking to the students, & as far as your child's classmates specifically, it's important to help them develop an age-appropriate understanding of FX. Kindergarten & early elementary years are more about reiterating how different people are the same on the inside. I have shared a picture book called Special People, Special Ways & found it to be very helpful. Another awesome technique I learned was to use a toy for show-&-tell if you will... one with lights, sounds, & all the bells & whistles. Then take the battery out, & demonstrate how the toy is still a toy even when it's quiet-- & just because something might not work the way you expect, doesn't mean it's not fun to play with.

The main idea to keep in mind with students, teachers, & other faculty is that unfortunately (but fortunately) FX is not a household name like autism. Even if people have heard of it... even if they know who your kid is & they have met your kid... they might not actually be able to explain FX, or how it affects your child.

In general this should guide you on how to help them, help your kid.

--

the next big thing on sliced bread!

When Hayden is hungry, that boy can eat.

Like many kids there are some days when he simply isn't hungry, but when he has a good appetite-- move over & watch out. He will easily consume larger-than-adult portions. He has always been that way since infancy... (not the portion size of course, but just eating well in general).

Even as a newborn when babies are on a liquid diet, he used to make this sort of humming noise when he was being fed. Then when he graduated to puréed foods, we used to say he was just like a bird... he would sit there with his little mouth in an "O" shape waiting for someone to put the spoon in. Feeding time was almost always successful & it was extremely easy to ensure he had balanced nutrition.

But as he developed, so did his now sensory-driven diet. I don't think there are many foods that he doesn't like the taste of, but holy hell do textures get in the way of our options! It is super frustrating.

The list of "typical" foods he will not touch has always included many items that are practically staples for most people. Such as... a bowl of cereal & milk... juice... pasta... sandwiches in general... yogurt... most fresh fruits & vegetables that are firm, smooth, & moist-- he can't handle the texture.

He will eat applesauce sometimes, also he has had watermelon before, & occasionally (but rarely) he will eat a spec of a broccoli floret or an asparagus tip (or something like that)... but not often. Thank goodness I can put chopped spinach in his omelets-- (thank goodness he'll eat eggs--) but that's pretty much it from a fruit or veggie standpoint. 

On Monday I was making Dan a sandwich & Hayden said he wanted one too. It's pretty common that H will ask for something which he either doesn't really want or would not eat anyway. I humored him & thought what the heck... it's just a roll & cold cuts. If it gets thrown out, it gets thrown out... not like I have to stand at the stove & cook something.

I made his sandwich on a round kaiser roll (sans cheese or mayo), & then quartered it. He ate the whole damn thing & then asked for more.

!


Flippin' amazing!

But we thought for sure this was a fluke. One & done. He must have just decided he wanted a sandwich, but it will never happen again. It was awesome to witness, though-- from a kid who just doesn't really eat foods that you have to pick up & bite into. For example, an apple or a chicken drumstick... he feels the same way about sandwiches. He will eat pizza (sloppily) & doughnuts of course (while either wearing half or covering the floor with it), but mostly food has to be cut up for him... even hot dogs. It's sort of a long explanation about oral motor challenges, but you'll have to take my word for it.

The point is, something very simple that most people would not think twice about for one second is a very big deal for H: just eating a sandwich.

Well, the next day, he was with my father while I was at work. After I got home my dad told me they went to the diner for lunch, & H had a hamburger.

Woah. What?! Basically the sound of a record scratching went off in my head.

I said, "I don't understand. He wanted the meat? You just cut it up for him?"

Just to get you up-to-speed the thing is, H will eat meatballs or meatloaf but never burger patties. We've tried.

My Dad said, "No, he ate it on a bun. I cut it into quarters & he ate it & then he asked for more. I ordered another one but he didn't eat the second one."

So I said, "How did you know he was going to eat it?"

(I mean, out in public at a restaurant with H... the last thing you want to do is order something he might not eat, when you know he is actually hungry.)

And then my Dad said he ordered chicken fingers for himself & figured they could just switch.

Since then, Hayden has eaten two more sandwiches... one for lunch on the very first day of school, & then again this morning!

Granted it was a breakfast replacement because he was being stubborn, but for this I did not care.


My kid ate a sandwich! He ate sandwiches!



---

good yom tov & good apples

I went to one of those big chain office stores the other day, to get school supplies for Hayden. Specifically I was fulfilling the list sent from his 2nd Grade teacher.

This is the first year that we got one of those lists & I can honestly remember every item on it without even looking: 3 different color-specific folders, plus 1 of our own choosing for Spanish, a composition notebook, 2 pencils, 3 highlighters, wet-erase markers, chalk, scissors, 1 large book cover, 1 small book cover, & a glue stick. These are the things they need for Grade 2. 

(Oh, & he has Science this year too!)

Anyway, the place was way more crowded than I have ever seen it-- kind of like a home improvement store the day before a blizzard is predicted to hit. It seemed like every customer in there had a minimum of three children in tow, with each child holding their own teacher-supplied list of necessities. If they had all been plucked directly from the store & placed anywhere outside, it would have looked like a scavenger hunt.

I took a shortcut by interrupting a young sales person & asking for directions to this & that aisle, so I could get the heck out of there as quickly as possible. He managed to escape me when I still had one item to go, so I summoned an older woman from her ladder as she was adding stock to those higher shelves... the ones far above the reach of the ducks on the ground, where there is always something you need & never anyone around to get it down for you.

I almost bought whatever she was putting up there just for the sake of convenience... it reminded me of passing an empty deli department when you don't even need to take a number, & consequently find yourself asking for a half pound of low sodium turkey which you already have at home. But the oddly enthusiastic meat cutter in white garb & enticing idea of not having to wait in any line is too tempting to pass up. (I sort of wonder why those people are always so chipper anyway, but I imagine that guiding a deli slicer could potentially feel powerful & almost fun, challenging yourself to see just how thin you can shave the cheese. Better than cutting it, anyway.) 


Well, I'm trying to lighten the air but I actually have a pretty significant observation to share.

I recently had a heated conversation via email, with a woman from an agency that services people with special needs of all ages-- including geriatrics. They pair up therapists & home care specialists with clients seeking assistance. They are linked with various other agencies as well, to expand their network of resources.

We worked together this summer to incorporate childcare services, along with H's regular sitter, who actually has other commitments & can not give us all of her time (how dare she).


For the most part things went well this summer. But upon these home care services coming to a close as the new school year begins, the woman from the agency was now encouraging us to be paired with a therapist. She is a strong advocate & I suppose she was only trying to offer her professional opinion.

However, very long story short, we already learned through a lot of investigating, advocating, etc... insurance will not cover these services. And the fact is, they are beyond our resources to pay out of pocket.


That being said, the truth is during the regular school year Hayden's curriculum is not exactly lacking. During the summer months his program is significantly reduced, but for the rest of the year... he has at least 100% support if not more.


But this woman was persistent & began to make assumptions. She told me that by sitting & waiting we were stunting Hayden's growth, & that his school district is not equipped to handle his needs. This is just the tip of the iceberg as far as her "expert" opinion. She even judged some of Hayden's specific accomplishments, as being less progress than they should be, for an 8 year old. And no, unfortunately I am not kidding.

So here I am doing all this preparation for H's Second Grade year, & I foolishly start thinking about what she said & pretty soon I get myself in a funk. Because the reality is his day will not be the same as the other Second Graders. He will have all the same supplies & he will be included for some things, but not others. He will fulfill most of his academics in a different setting that is more appropriate for him... the pace, the teacher-student ratio, the material, etc. 

Even though I believe Hayden's school schedule has a truly beneficial balance for his personal growth, I do occasionally second-guess. Because as the kids grow up-- yes H continues to make progress-- but the developmental gap between him & his peers only widens. 

But then I started to really sit & think about how far we have come... how far Hayden has come...

And I sat down & responded to this woman. Here is just some of what I had to say. I have omitted portions of personal information, but I also borrowed a lot of her own verbiage & threw it right back:


"I have been advocating for the best possible services & curriculum for Hayden, literally since the first month we had his diagnosis in November of 2006. Never for one moment am I in any sort of "sit & wait" mode, regardless how difficult something is to achieve.

In addition to all of the services that my husband & I were personally able to obtain for Hayden-- (beginning with tripling his Early Intervention hours, & through preschool when we customized an all-day program for him which didn't even previously exist, & now during his elementary school years to appropriately balance his academics with his social needs--) we have also supplemented countless hours of private therapies over the years.

This has been a tireless journey that I can not begin to summarize in a few sentences. I know in my heart of hearts that he is being challenged to his ability of achievement. From our point of view... I will say the school district has proven to be equipped to fully educate a child with the type of needs Hayden has. Budget cuts pose a continuous challenge, but there is never a time when my voice is not heard or my concerns are not addressed.

At one point we actually had a specialist from the FX clinic in NY come & observe Hayden at school. Not so much because we had problems, but rather we wanted reassurance that we had an appropriate program in place. And truthfully, his team was equally eager for the input. Following the visit, this doctor who has 30+ years working with kids with fragile x... said that the people who work with Hayden 'renewed her faith in public education'. (The fact is, many of the people she met that day are still a part of his team... the same therapists, & so forth.)

I have never felt we were stunting Hayden's accomplishments/ achievements.... His needs are always our primary concern. I know whatever we line up for Hayden in the future, he will be in good hands."

She has not yet replied.

Meanwhile, I was at H's school today for my 2nd annual FX talk with faculty. (You know, because my decisions are clearly stunting Hayden's growth.) But anyway, following my brief presentation, a few minutes of mingling, & a couple of side conversations... I learned some pretty jaw-dropping news about staffing & other details for this year (i.e. tomorrow).

Despite all of the changes that H will surely notice, I was simultaneously reassured (believe it or not). There are definitely some kids who will have way more adjustments to deal with, than he.

The quiet way some of the teachers responded to my eyebrow-raising how-can-that-be comments, & all of the how-can-they-do-that rhetorical questions, strongly demonstrated the difference between students whose parents are very involved, & students whose parents are not as involved.

Certain tight-lipped teachers who did little more than nod, offered strong (albeit subtle) suggestions... just how influential parental involvement really is.

Not that I didn't begin suspecting this some 5 years ago when H first entered the school system (for pre-K)... & I literally threw myself into the thick of it  (at the very least to ease my own anxiety & at the very most to make a difference)... but wow... today offered some concrete proof. 


This evening marked the beginning of Rosh Hashanah, which is the Jewish New Year. Ten days following Rosh Hashanah or the Day of Judgement, is Yom Kippur-- the Day of Atonement. It is believed that G-d opens the Book of Life on Rosh Hashanah, & the 10 days between Rosh Hashanah & Yom Kippur are viewed as an opportunity for Jews to repent, to ensure a good fate. During Rosh Hashanah it is a mitzvah to hear the shofar or ram's horn blown, as a literal & spiritual "call" for this special time of year.

There is not much of a Jewish population where we live, & as a matter of fact the first day of school is on Rosh Hashanah... something that never would've happened in the township where I grew up.

But on this day I should never discount the fact that the incredible
people on H's team are truly good apples, & they are always looking out for my guy. Perhaps even more than I realized.

I brought snack packs of sliced apples to the meeting today... sort of a dual-meaning gesture: apples for the teachers & apples for Rosh Hashanah.

H's teacher is bringing in honey tomorrow to share the sweet New Year treat with the kids, on their first day of the new school year.

--

So what can I say... do I still have Second-Grade anxiety?
Yes.
But Second-Grade hope? Yes, that too.

Wishing a Good Yom Tov, or Good Holiday, to all who observe.