The Best Way I Know How to Say…

… Thank You and Goodbye

Have you ever had dozens of people to thank but find the process of thanking them all a bit daunting?

That’s the position my wife and I are in today. Fortunately, I have this platform on which to do my best. And even though I’m going to try my best, it’s still not going to be nearly good enough.

Our son Damian is wrapping up 4th grade this week at his public school here in West Hartford. While all the other kids at his school will be returning next year, or moving on to the neighborhood’s middle school, Damian will not.

Our son has been outplaced to another school in another town. As a profoundly disabled student, he most likely will attend this new school until he is 22.

Please know: this is a good thing. Don’t be sad. Hopefully, it will be a very good thing. Our neighborhood school and its staff has not failed my son. Quite the opposite; they’ve done literally everything they could do to provide for him.

But his Smith-Magenis Syndrome has proven to be too much. His unique needs and difficult behaviors are simply not a good fit for inclusion. While Damian is a beautiful, hilarious, wonderful kid, SMS is none of that. It’s an insidious genetic beast of a syndrome, and it demands an environment and an educational program that even the best public school programs cannot provide.

Damian is a little boy with SMS. Damian is not SMS.

By supporting Damian’s outplacement, the West Hartford public school district has done the best thing they could do for him – and for us. And we love and respect them for that.

Damian has been attending West Hartford public schools since he was four. As he grew older, his difficult and violent behaviors increased along with the divide between his peers. The social divide, the intellectual divide, the physical divide, and most notably, the behavioral divide. That’s just what happens with an SMS kid.

And that’s what will continue to happen for the rest of his life.

A life that is constantly confused, difficult, and violent.

As I’ve said, SMS is not fun. We – and by “we” I’m including everyone who cares for Damian – must be constantly vigilant and aware of where he is and what he’s doing at all times. It’s exhausting. We must manage his behaviors at every turn. Simple things are not so simple for us.

Car rides, simple little transitions between activities, meal times… every minute of every day. SMS is an eternally ticking time-bomb and no one – not us, not Damian himself – can always predict when it will go off.

Or for how long. Or to what degree.

And so, to the long list of wonderful caregivers over the last several years, we thank you. From the bottom of our hearts, we thank you.

We (including our extended families and his little brother) love Damian unconditionally because we are his family. You, the caregivers, have loved Damian because you are simply good people.

You choose to care for and educate kids like mine. Intellectually, physically, and/or behaviorally impaired children are among the most difficult to reach. Yet we’ve known dozens of you who have just been wonderful. You care – not just about our son, but you care for all the kids who have come through your doors. The term “special needs educator” is a good one… It’s not just the kids who are special in this equation. And you never get the respect and attention you deserve.

This is my small attempt at trying to recognize you. Again, there have been far too many over the years and I’ve surely forgotten several. But Damian remembers you. You know he does.

First, I’d be remiss to leave out the staffs at Birth to Three and Educational Playcare in Farmington who were with us through the emotional time of Damian’s diagnosis. We thank you.

To the staff at First Church in West Hartford (some of whom we are still in touch with), for your care and patience, we thank you.

To the staff at Creative Development in Avon, we thank you.

To the bus drivers who have safely delivered our boy home and to the above places over the years, we thank you.

To the bus monitors who have had shoes thrown at them too many times, we thank you.

To the teachers at Whiting Lane’s Early Learning Center: Ms. Sue and Ms. Megan, who experienced and encouraged some of Damian’s first attempts at speaking (5 years old), we thank you.

To the paraprofessionals and aides at the ELC, we always knew your roles and how important they are… we thank you.

To the paras over the elementary years who helped us after school with Damian in our home (perhaps the hardest job of them all!) you always meant the world to us and to Damian; Amanda, Ali, Emily, and Alyssa, we thank you.

To the staffs at the West Hartford summer extension programs at Whiting Lane and Bristow over the years, we thank you.

To Ms. Goldenthal, Damian’s incredibly supportive kindergarten teacher, you made the transition to “real school” infinitely better than we feared it would be; we thank you.

To the 1st through 4th grade teachers: Mr. Muska, Ms. Greenfield, Ms. Larson, and Ms. Campagna – with each year becoming more of an “inclusion struggle,” you kept trying, kept allowing Damian to sit in your laps for story time, and kept a positive outlook for Damian and his future – we thank you.

To the BCBA Mr. Matt who did everything and anything he could to implement strategies and environments to help manage Damian’s violent and oppositional behaviors, we thank you.

To the Curriculum Specialist, Ms. Griswold, who not only guided and led the out-placement effort, but has always been kind and understanding of our son’s special needs. Have fun in retirement – did Damian help make that decision easier? Just kidding… I think. We thank you.

To the various occupational, speech, and physical therapists (Ms. Tess, Ms. Liz, Ms. Emily, Ms. Monica), we know you have dealt with some of Damian’s “worst”… and some of his best. We thank you.

With each successive year, Damian would spend less time in his inclusion class and more and more time in his Learning Center for kids like him. The Learning Center teachers became like family to us. I can’t imagine we’ll ever stop keeping in touch with them, and so:

To Ms. Higgins, who spends her free-time attending charity events for the kids she helps and just has a heart of gold, we thank you.

To Ms. Santangelo, whose honesty and humor was always a welcome part of our drop-off process (and who has pinch-hit over the last few years to help out), we thank you.

To Ms. Davis, who held Damian’s hand as he began to get more difficult, we thank you.

To Ms. DiGiacomo, who never hesitated to do everything and anything she could to provide the best environment for Damian, we thank you.

To the paraprofessionals and aides who have been by Damian’s side for the last six years, you are the true heroes. You take the punches and the thrown sandwiches. You deal with the poop and the pee. The transitions… all of it, every day, all year. Damian has made one or two quit their jobs within a week. Those of you who soldiered on and came to love our child: Ms. Amanda, Ms. Ali, Ms. Emily, Ms. Z, Ms A., Ms. Alyssa – and a few others – my goodness do we ever thank you.

It’s no accident we remain in touch with almost all of you. You ARE family. And know that Damian loves you all.

And finally, to Damian’s super-aide. Typically, 1:1 aides/paras are moved off of kids after one, maybe two years. They don’t want the kids to develop a super-reliance on one person. And we appreciate that, but Damian’s behaviors and quirks are not exactly a good fit for every aide. Damian was paired with one Ms. Cardona in kindergarten.

And first grade.

And during summer school. When he went to the special needs camp in town (before he got “removed” two summers ago for being violent – that’s right, our special needs kid was too special needsy for a special needs camp), the town hired Ms. Cardona to be by Damian’s side.

And in third grade after a couple other paras didn’t work out and quit (!)

And in fourth grade when the school realized you were Damian’s best friend and partner in crime. You have been and always will be very special to Damian and to us. We will certainly be in touch and will never thank you enough.

Phew.

When we brought up the outplacement idea in Damian’s late April PPT, we were a little apprehensive. Outplacement is not something that often “just happens.” We have been fortunate that the district was quick to act and has been fantastic to work with throughout the process.

We are fortunate to have found a place for Damian at a school that specializes in “behavior kids” and has experienced behavioral therapists on staff.

It’s interesting, most special needs kids can succeed in inclusion programs. If not, there are a slew of schools that are dedicated to special needs kids. But here’s the thing: The vast majority of those schools won’t accept “behavior kids.” They are upfront about that.

Which leaves families like mine in a very difficult place. Our child is already a “black sheep,” so to speak. To learn that he’s the black sheep of the black sheep has been somewhat eye-opening (starting with his getting booted from the special needs camp). By my anecdotal accounting, there are really only two or three schools in Hartford County that take in “behavior kids.”

Do you have a song about something else that you have sort of always thought is about your particular circumstance? I do that all the time… and I thought I’d share one of my favorites. Radiohead’s “No Surprises” is pretty much about our wonton destruction of the environment, but certain lines just gut me for some reason.

“Bruises that won’t heal
You look so tired, unhappy”

“I’ll take a quiet life”

“With no alarms and no surprises
No alarms and no surprises
No alarms and no surprises
Silent, silent”

“This is my final fit
My final bellyache”

And the last one:

“Such a pretty house
And such a pretty garden”

Always gets me. We have a “pretty house” and a “pretty garden” in a way. People have no idea what happens inside that house on an all-too-regular basis. Our life can be pretty crazy; we’d love to have “no alarms and no surprises” and no “bruises that won’t heal.” But we don’t.

And we won’t.

My wife and I agree that Damian’s peers deserve to learn in a safe and focused environment. We understand that Damian’s syndrome disrupts that and is not fair to them (or him). We’ve had no issue with the “exclusion” that was necessary for Damian.

We are also very happy that those peers got to know Damian over the last several years. Kids are amazing and it’s incredible how far we’ve come as a society. To the other kids at his school, Damian is just Damian. He does some odd things, sure, but they have always been kind to him as far as we know. Back in my day, no way that would have happened. The West Hartford school district has provided a wonderful experience for all its kids, including mine.

We’re losing that now, as every kid at our new school will be disabled in some way – all intellectually, and many emotionally and behaviorally like our son. The state’s general philosophy is to try to involve special needs kids with typical peers as much as possible; to show model behavior. And that’s great!

When it works.

With some kids, it just doesn’t work.

I have one of those kids.

And it’s nice that he’s been so loved by so many people over so many years.

Thanks again to you all, and keep doing what you do.

Love,

Damian, Hoang, and Steve

Smith-Magenis Syndrome Research Foundation