Clouds, May 2010

Clouds, May 2010

Saturday, April 12, 2014

from the DMD to the IEP

The building itself is big & corporate-looking, but it's nice nonetheless. Their office is on the 2nd floor & Hayden enjoys taking the elevator (quite unlike his claustrophobic mother), so that part is fine for him.

We had only been there one other time last year. The waiting room is clean & colorful & a good size. And the "wall" dividing the sitting area & play area is actually a gigantic fish tank.

Inviting wall art, too, & cute tooth stools. Also as you can see, Grover came along for bravery reinforcement.

I was very proud of him for being so calm. In an attempt to create a social story for him on his iPad, I continued to take positive pictures of him in a setting that is often quite the contrary.

I was most impressed when he eventually, willingly, sat in the patient chair. He even smiled & posed:

But what's equally fascinating, is that he voluntarily removed his hat & put Grover to the side, when he sensed it was time to get down to business.

 I was just speechless at this point... even more so when he allowed the dentist to interact with him a little bit. I actually caught this pic of H smiling with the man. Unfreakingbelievable.

Unfortunately, however, as soon as the latex gloves went on & the dentist asked Hayden to lay back, that was the beginning of the end.

But again... the fact that the end did not begin until then, is actually a tremendous success. This is hands-down one of the most anxiety provoking environments for him so even though we barely got through the beginning part of the exam, & it ended there, I have to count everything leading up to that as serious improvement.

The best part is I later found out that he did such excellent work at school that day (?!), they assumed he was on something from his appointment that morning. (Ha!) Definitely one of the most unexpected & confusing things I've heard in a long time. But I'll take it.

So speaking of school, the other big event this week was his annual IEP. That morning I sent him to school with little Teacher Appreciation goodie bags, because it was Day 5 of WOYC (Week of the Young Child), a NAEYC program (National Association for the Education of Young Children).

Here are Days 2 through 5, because we missed Day 1 (which was upsetting when I saw it was Purple). These are the other 4 in order of appearance:

And here are the goodie bags for Teacher Appreciation:

The IEP may have been the same morning that I sent him to school with those little goodie bags, but I deny bribing. However I can't say the same for the bagels & juice I walked in with.

The Gen Ed teacher spoke first. He shared that Hayden is finally interacting with him more & using his name. (I took the opportunity to look at the Case Manager for a second & reiterate that transitions can take a fair amount of time for Hayden to adjust. I was planting the seed for a later segue regarding a meeting with next year's Gen Ed teacher). He also said that although Hayden needs help sharing materials during Science, in some ways this is an improvement from beginning of the year. At that time he was uninterested altogether... vs now... apparently he wants the materials for himself. And sometimes his speech needs to be maintained at a lower volume, because the teacher feels like he is speaking over Hayden. (I could see that)

When his Special Ed teacher spoke, she said although Hayden is (unfortunately) once again demonstrating a refusal to attend to task sometimes... his overall behavior is definitely improved. He is more easily recognizing when he's feeling overwhelmed. Furthermore, he takes less time to calm from the incidents. We also believe that his new treatment regimen is helping him transition better.

Sometimes there are isolated circumstances when his inability to regulate will escalate to a meltdown. He may take it out on his Aide. They're also using techniques to get him to recognize this & remind him it's inappropriate. The teacher prompts him to apologize in such incidents (after he has calmed), but he doesn't like doing so. Therefore she recorded "sorry" & encourages him to use the button... which he doesn't always do, but she can make it incidental by pushing it towards his hand (insert me shaking my head at him).

So if he is in meltdown-mode, they will remove him from the situation so his peers do not see him like that. They have a quiet spot to bring him to so he can sit (with some sort of partition to maintain a level of privacy), & allow himself to essentially get it out of his system.

A noteworthy detail though, they've observed that even if he's having a tantrum, he now speaks in full sentences. You can't blame the speech therapist for being somewhat proud of this. When it was her turn to share progress & goals, she had a lot of great updates to offer as well. I always love her notes because she is awesomely observant. Such as, noting:

  • He asks questions during structured activity
  • He uses conjunctions now, such as "but"... I am hungry but I don't want that one
  • He correctly uses phrases such as "that's not the point"
and my favorite:
  • He can recognize if she doesn't understand what he says
  • He will say it in a different way so she does understand
    (insert big smile:)

Right? Because he is a happy, eager-to-learn, goofy guy.

And despite the fact that it's a continuous adjustment for me, that these are the ways we must measure Hayden's progress...
I do live for these "WOW" moments (to quote his former teacher), & I am grateful to experience them.

He loves life. And that's what matters.

The other night I went into his room because it sounded like he was talking to someone.

This is what I found.

(See what I mean?)



Wednesday, April 2, 2014

green or blue?

Did you wear your blue today? April 2nd is World Autism Awareness Day, so people everywhere are participating to Light It Up Blue

(& National Fragile X Awareness Day is July 22nd... so you might as well mark your calendar now, so you remember to wear your green)

I am not the most knowledgeable person on the topic of autism. I know some facts & I understand some of the treatments, but I do not live with autism (as far as I've always known)...

I do however live with a son with fragile x syndrome (fxs)... which just happens to be the most common known (single-gene) genetic cause of autism. Click here to read more about that.

Approximately a third of all people diagnosed with fxs also have autism. At a recent checkup with one of Hayden's specialists who is monitoring his current treatment plan, the doctor asked me when Hayden was last evaluated.

She also asked if I knew about the latest criteria.

The last time Hayden was evaluated was several years ago when we visited the MIND Institute
, & at that time they were using a new criteria scale.  There are two details I remember:

1. The scale began at the number 12. Any score below 12 was not on the autism spectrum & any score at or above 12, was. I am not sure how high the scale went, but I do know that autism is a very broad spectrum so I imagine it is quite high. They said Hayden scored a 12.

2. We were told this was because of his gaze avoidance.

Although some of the circumstances which often trigger difficult behaviors in Hayden are closely related to similar triggers for a person with autism, I do not agree with the specific "gaze avoidance" criteria.

One of the main reasons why Hayden was not diagnosed sooner, was because he has always been so engaging
. Excellent eye contact... laughs when appropriate... cries when appropriate... displays empathy... very loving... & loveable. It seems everyone expects the complete opposite though-- particularly when global developmental delays are evident, & they are trying to determine a "hidden disability" (such as fragile x or autism).

Our visit to MIND was for both evaluation & study participation. So this was a reciprocal exchange of information, & therefore it was rather intensive & tiring. Both the facility & the people who fill it are equally pleasant, but it was a lot to cram in during such a short trip.

So if you ask me the gaze avoidance that the folks at MIND witnessed, was a combination of jet lag + strange place + unfamiliar people + a lot of participation expected, etc... which is basically a recipe for = leave me alone.

Back to Hayden's recent checkup...

The neurodevelopmental pediatrician shared the latest autism criteria. She explained that the medical community is evolving from the separation between autism & Asperger's syndrome... & that all related disorders are now going to be classified under the autism spectrum. The diagnosis code is DSM-5 in case you were wondering
(also updated from the Roman numeral V, which she hand-corrected for me, on a printout of the diagnosis criteria).

Hayden's challenges also include Sensory Processing Disorder. Furthermore, familiarity with routine (including people, places & tasks) helps him be at his best.

I have never really thought about Hayden having much of anything to do with autism. And the last thing in the world I want is another diagnosis for my son.

But let me tell you this much... (& I am borrowing this quote that I have seen all over social media because it is SO true)... the discussion with the doctor made my heart see something that my eyes may have been missing.

So for my readers who are sort of opposite me because they know autism and/or live with it, but not fragile x... I'll just throw this out there...

Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. - See more at:
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. - See more at:
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. Other genetic causes include deletions of chromosome 15q, tuberous sclerosis, PKU and other rare genetic conditions. - See more at:
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. Other genetic causes include deletions of chromosome 15q, tuberous sclerosis, PKU and other rare genetic conditions. - See more at:
Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism. Other genetic causes include deletions of chromosome 15q, tuberous sclerosis, PKU and other rare genetic conditions. - See more at:

(thank you, M, for sharing the awesome pic... & sorry for correcting the typo <3 blame it on my genes)