please remain seated

It seems we're still having challenges with transportation compliance this year.

I mentioned this issue a couple of posts ago, & why the option of the seat belt cover wasn't such a comforting one. I may or may not have mentioned they also tried another style where the buckle can be removed by hand but it is tough to take off... kind of like a child cap on a medicine bottle.

Well, H figured out how to remove it.

I was recently discussing the issue with the behaviorist & she of course offered the rational perspective that the rest of us seem to forget... such as, preventing H from getting out of his seat is not solving the root of the problem in the first place.

Considering the fact that I am not with Hayden when he is on his way to school, it's exceptionally challenging to figure out what is prompting him to remove the seat belt & stand up when he's not supposed to. Keeping in mind, this is a new challenge as of this school year. Furthermore, although his speech has progressed considerably over the past few years & continues to improve, the fact is Hayden still has limited communication.

Something is different & we do not know what it is, but it's obviously affecting him. So the next idea came from H's teacher in the form of a short social story-- this is a popular technique for reinforcing expectations & therefore hopefully curbing behaviors, in children with special needs.

It's clear she put a lot of work into this (& managed to do so in a very short amount of time). The small book is nicely laminated, with binding, & even personalized with photos. Despite the unfortunate fact that my fidgety son had the thing half taken apart on the very first day he held it on the way home... we will continue to try & reinforce the lesson with him.

In addition to the social story, they have been thinking through other strategies as well. Today began the first trial run of reversing the morning route, so instead of H being picked up first he was picked up last. I suppose shortening the travel time to school could be helpful but it's too soon to tell. I will say this morning he was getting somewhat anxious, because he sensed when it was supposed to be time to leave & I had to continually distract him.

Next week we are having a progress meeting & I am grateful in the meantime everyone is continuing to put their heads together to help H. But last week there was one particular conversation which left me rather upset.

The Principal called to let me know that he too tried to talk to Hayden about the importance of wearing a seat belt & staying seated. Hayden-- in so many words-- communicated his dislike for the seat belt but also that he understood & he will try. Apparently he actually said he hated the seat belt, but it's important to note sometimes he uses the word "hate" when he does not really mean it.

For a number of reasons which I won't bother outlining, in my heart of hearts I do not ultimately believe that this has a damn thing to do with the seat belt. Never mind the fact that this is the 3rd new driver in less than two years, ever since the school switched bus companies to save money...

& we know how kids with fragile x just love changes.

But the part of the conversation that upset me was when the Principal mentioned it had been communicated to him, that Hayden was rude to the driver & rude to the nurse of another student.

rude

adjective \ˈrüd\ : not having or showing concern or respect for the rights and feelings of other people : not polite

Rude is basically someone who is being a jerk. Rude, however, is not an accurate way to describe someone with intellectual disabilities.

Hayden is genuine, he is kind, he is inherently gentle, & he is actually empathetic. Every one of his behaviors has a purpose & although it might not be obvious to a teacher, therapist, behaviorist, or any other specialist... & believe it or not perhaps even to the parents... there will be times when Hayden will not be able to control his emotions or reactions... despite his very best efforts, & despite the fact that it's obvious just how much he struggles to regulate his anxiety.

The name fragile x syndrome comes from a defect on the x chromosome. This interferes with the body's ability to produce a certain kind of protein. Although this protein is not needed in most parts of our bodies, one organ that does need it is the brain. This lack of protein causes a depression of the brain, but not in the popular sense of the word. Rather this is referring to something being expressed too little, too much, or just inappropriately.

That is not the same as rude. And the worst part is that even if Hayden was just some obnoxious kid who was channeling his frustration by not wanting to stay seated on the way to school, then so the F what. That wouldn't change the fact that he is just a child & something is bothering him.

I often think it's actually the rest of the world that needs to stop, sit down, pay attention beyond the obvious, & please remain seated until they can really understand what's actually going on.

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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.

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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...

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"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.  

 
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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.

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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


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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.

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