Clouds, May 2010

Clouds, May 2010

Friday, May 17, 2013

the right to an appropriate education

Although Hayden is part of a Gen Ed class each year, he fulfills his academics in a Special Ed setting. His Gen Ed teacher changes from year to year, but the teacher he works with for reading, writing, math & so forth, remains the same. She is a crucial, consistent part of his school day.

Just this week, we learned due to budget cuts & various teachers losing their positions, that those with tenure have something called bumping rights. So if the original role they filled is no longer needed, then they have seniority to fill a different position if it's offered to them. Thus essentially bumping someone else, non-tenured, out of their current job. Even if that non-tenured teacher is quite literally a special teacher, & one who was actually recruited to head an inaugural program. A program which was newly created, out of need, for students with special needs.

Hayden's Special Ed teacher is one of three who are newest to the district, & she is non-tenured. That's like a double-negative.

After speaking with the Board of Ed, the Superintendent, our Case Manager, & other administrators, I was encouraged to put my concerns in writing.

I was assured even though the law is the law, that my opinion would not be spoken in vain.

Here is a substantial portion of my letter with certain information & names withdrawn, or abbreviated, due to privacy:

"Hi Mrs. P,

...I understand you are not personally in a position to wave a magic wand (I so desperately wish I had right now), but I appreciate you helping me understand the importance in sharing my views.

I certainly wish I were in a position to NOT have to worry about anything so serious from one school year to the next, but as you know when you have a child with special, or different, needs— there are new challenges every year.

As I believe you are aware, Hayden is currently a first grade student at FMB & he has a genetic disorder called fragile x syndrome. This is not as common a household name as something such as autism, but incidentally this too is a hidden disability. Even more interesting, fragile x is the number one known cause of autism & the most common inherited form of intellectual impairment.

What this translates to in Hayden’s case— because the spectrum of how this affects people with fragile x is broad— includes, but is not limited to: global developmental delays, general anxiety, & sensory processing disorder, to name a few.

Consistency is crucial to set Hayden up for success in terms of almost anything in his life, but particularly details pertaining to his education. So when regular circumstances such as a teacher’s retirement will affect staffing, & someone like my son is absolutely going to notice this & be affected by it, I am even further motivated to find any & all ways to maintain consistency wherever possible.

In the world of real estate we hear ‘location, location, location’, & in the world of fragile x (or any student with special needs) we know ‘schedule, schedule, schedule’ & ‘consistency, consistency, consistency’… because this is what keeps our kids calm, able to focus, able to attend to task, & ultimately able to succeed.

It goes without saying that there is a population of students who will be affected by any change, but referring to my son for example & considering retirees first… next year the friendly, familiar face of the secretary whom he has seen in the front office every day since he started at FMB back in 2008, will be a new face. Then there’s the teacher he is finally growing comfortable with in art class whose position will also be filled by a different face next year… & this is an area in which Hayden has to put forth a tremendous amount of effort to complete a project, & sometimes he can feel overwhelmed even just from a sensory standpoint. But if you witnessed his own sense of pride when he does finish a project, then you would know how he is very aware of his own accomplishments.

And probably the one retiree whose discontinued presence will affect him most, is the nurse who administers Hayden’s medication every morning. She has been a familiar, trustworthy face to him for the last five years… someone he has such high regard for, that she is able to help with something even his very own parents have a challenge with at home.

Again, these are just some of the changes simply occurring due to various retirements.

But adding to this, are the changes from budget reductions, which ultimately cause many shifts in staff. Consider music for example. This was the very first year that my son had the opportunity to participate in a school concert. Because of his anxiety, I was offered the chance to observe their final rehearsal. Since he might or might not stand among his peers on the night of the actual performance, this was an opportunity for me to see him enjoy being on stage.

But apparently just the anxiety of the rehearsal alone proved to be almost too much for him, & he became physically ill a couple of times. Finally he was calm enough to sit with his Aide near the others, but was unable to bring himself to stand with them. On the actual night of the concert we had to play-it-by-ear, so as to not exacerbate his anxiety. Somehow we did get him in the car & over to the school, but then there was a substantial amount of wait time because the Second Grade performed first.

Hayden’s Aide was able to encourage him up to the stage (with her), but he would not stand with everyone.  Then when the First Grade performance concluded & the Second Grade joined them for the final part of the concert, she casually let go of his hand & told him he had to move over to make room for the other kids. He was taken off guard but shuffled towards the center of the row.

Every time he looked up his eyes went straight to Mrs. T. She is the face of someone he knows well, & just by looking up at her he was able to stand among his peers & participate in his own way. It literally brought tears to my eyes & as a parent this was a surreal, incredible, unforgettable moment.

It wasn’t about pressuring him to participate just because everyone else does. It wasn’t about doing this for me or for the camera. The fact is I just wanted him to know that he can do this.

To all of the aforementioned points, if there are any areas we can avoid inconsistencies then that is exactly what we need to do. Hayden’s General Education teacher will change from year to year & that is to be expected. Yet each time when this does happen, it is still a major transition for him. (He is still not fully adjusted to the new transportation in place this year, either.)

So therefore maintaining the role of the irreplaceable Miss B is without a doubt, a primary concern.  

I know I have said this before & I will reiterate, having been raised the daughter of a special educator I can understand this from both sides. But I also understand that we should be on the same side. It’s our job, as parents & as administrators, to ensure that a program is carefully formed with every attention to detail in order to provide a proper education. We know his current education plan to be proper based on progress.

I understand that due to certain laws, many people have their hands tied, so-to-speak. I can appreciate the difficulty in considering anything that might set a new precedent. But with all do respect I don’t consider accommodating a child with special needs as setting a precedent, but rather, adhering to one.

Please pardon me for sounding rather forthright, & this is not directed at you personally in any way, but apparently somewhere along the way it was dictated that all teachers would be bucketed into one of two categories: either tenured or non-tenured. But you see, as a parent this hardly convinces me that budget decisions are being made in the best interest of the children.

There is obviously a reason that these kids have IEPs. Luckily at some point society learned education programs need to be refined to fit the needs of a student, & not the other way around. I strongly believe that particularly during their elementary education, these are the years which will shape the rest of their life.

This is about much more than the fact that Miss B holds a special education certification & she was hand selected following a very careful, thorough, long interview process specifically for the MD program. This is about much more than the fact that it was agreed she was the best candidate to head the program, since its inception. And it’s not just about the fact that she is very highly regarded by the district (rightfully so, I might add), or the fact that she is very highly regarded by her colleagues.

The fact remains that none of the aforementioned automatically makes her the best teacher for our kids… she does that all on her own. Not her certifications.

Initially when Hayden joined FMB, it was during a summer session in the Pre-K program. That year the summer teacher was different than the one who would resume in the Fall. She was a lovely & pleasant woman, very kind, & eager to help.

During an innocent conversation with a neighbor, whose daughter had already been through the same program, she said something to the effect of, “Yes, I remember her,” (meaning the summer teacher). “She is nice,” she continued, “but she’s no Mrs. L.”

And in September, from Day One when the regular school year began, I immediately understood what she meant. It didn’t take a whole semester… it didn’t even take a week. The way that Mrs. L immediately engaged with all of the students, & looked at my child in such a way that I knew in my heart she saw the same potential in my son that we do… is not a qualification you can find on any résumé. Likewise, this is how I regard Miss B.

A couple of years back we had a specialist from a fragile x clinic in NY come all the way out to Andover to observe Hayden for a day. Her name is Dr. Vicki Sudhalter & she is with the Institute for Basic Research at the George A. Jervis Clinic on Staten Island. She has been working with families & children for more than 30 years. Throughout her career she has observed students in countless numbers of schools & with a very broad spectrum of varying abilities. One of her many areas of expertise is understanding how to detect when a child with fragile x may become overwhelmed, or hyperaroused as they call it, & how to prevent this. For people with fragile x syndrome, self-regulation is a constant challenge.

Immediately following Dr. Sudhalter’s visit at FMB, she told me that the people who work with Hayden “renewed her faith in education.”

I hope that the number of parents reaching out, or dare I suggest lack thereof, is absolutely no indication of how critical this is. Any such silence should certainly not translate into compliance of changes, or lack of concern over them. All it means is one of three things— there are likely parents who do not yet know of this issue, or there are parents who may know, but do not know what to say or who to address, & then there are parents who are misled to believe their opinion ultimately won’t matter. I support the contrary.

Near the beginning of my short novel here, I mentioned some characteristics about Hayden but I left out the most prominent ones— his smile, his engaging personality, his desire to be social, & his overall charisma. He is a happy kid who likes to do well, dress well, make others proud, & have opportunities to be proud of himself. He wants to be successful because thanks to someone like Miss B, he understands what that feels like.

Hayden’s inner confidence is certainly not something anyone can put a value on, & should never be jeopardized by any budget. My husband & I are active members of the fragile x community & between all of the conferences & various other events over the years, we have literally met people from around the globe. Anyone we have shared our education experience with is completely in awe of the stories about the people who work with Hayden— his team of superheroes.

Of course if you ask any of them, they will say that Hayden is the one who wears the cape." 


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