In 2011 my family built a home in the East Greenbush School District in Rensselaer County NY. It was a perfect location  for my multiply handicapped granddaughter. It offered a special needs classes (K-8) embedded in district schools where every opportunity for inclusion was present.  The middle school program is no longer, and the elementary school program will be discontinued. These programs have been moved to a vacant middle school in the neighboring school district  where they are isolated from their non disabled peers.

Before weighing in on the wisdom of such moves, I believe it is incumbent upon me to state as clearly as I can the basis of not only my policy judgements but genesis of my passion in such matters.

I am 77 years of age.. Growing up in the 40’s and 50’s a child occasionally heard the phrase “my mother is going to have a baby”. On rare occasions that would be the end of it. No child was forthcoming. Silence was often attributable to death at birth or the silent placement of a handicapped child. Such were the days of “institutional care”.

I was spared the ignominy of any complicity in the shameful public policy at that time. My family was always caring for someone and our home was open to one and all. I cherish the life long relationships that sprang from the closeness I had with those who were multiply disabled.

In 1964 I joined the staff of a very progressive child protective (abuse) unit. There I saw the ease with which we can ignore the isolation and needs of children. In early 1970 I joined the NYS Office of Mental Hygiene wherein I was part of a team resettling handicapped people from the infamous Willowbrook State School. Our team was part of the newly created OD Heck Developmental Center which itself devolved over the decades and became infamous in its own right, giving birth to Jonathon;s Law.

I now am a grandfather and caregiver to two special needs children. This role was the impetus to founding NYS Rare Disease Alliance and catalyst for our column Chatting with Haley and Poppy.

As a frequent flyer at Albany Medical Center’s pediatric unit I was asked to lecture MD’s in the Medical School about the needs of medically complex children and their families. It helped me sharpen my sensitivity to deficits in professional practices.. Common sense dictates that no one can know everything and when it comes to rare conditions the odds are overwhelming that professionals don’t know. The display of ignorance is often obvious to caregivers and parents. In medicine, this generates fear. The heart of my lecture focused on 3 things I observed about MD’s when facing rare syndromes. First they did not know the syndrome; second that was frightening to them and third they had no colleagues on which to rely for consultation. Next I told them I understood; and that fear and ignorance was OK. What was never OK was denying these things were so.

I can tell you from experience that caregiver leverage in medical care (which is little) is a little better than in education where fear of malpractice seems never present and your status as colleague seems out of reach.

That does not mean we cannot try. So I will try.

If you take children, with limited expression, locked up in their own head, living with a family and caregivers who are isolated even from their own relatives, stuff them together in a separate segregated class, isolate them in separate buildings you are committing educational malpractice. Any justification for such policy seems to run counter to a child’s need and their families need for inclusion.

I am here tonight holding the school calendar of the district in which my granddaughter’s class is embedded. It contains scores of beautiful faces and it seems to offer well over 100 activities during the school year. As a very active grandparent I feel 100% excluded from that community. I consider that a travesty.

Do you think that such policy changes go unnoticed? Of course not. Is there an outcry? Of course not. We are so few. For many of these children and their families outcries drain energy. Energy is in short supply in families with special needs children. So, I am here again to generate outcry, and I will return again and again if necessary. And I will publish again and again till this model of exclusion dies and a new one of comprehensive inclusion is born.

Yes I am agitated, but I am also here with my hand out to join with you in finding inclusion for these children. I am currently spearheading a project for the The International Foundation for CDKL5 Research Centers for Excellence at Boston Children’s Hospital and Colorado Children’s Hospital. The purpose is to link them up with the National Center of Adaptive Neurotechnologies right here in Albany, as they are an arm of the Wadsworth Center. My partner and granddaughter Haley would like like to see her home district become part of our efforts.

Editors Note: This is post dedicated to all special needs children isolated from their non disabled peers.

Let’s be blunt some more.

I am content with my family who knows me so well, yet, for many of you the jury is out. I see your perplexed looks when you fleetingly think that you have no clue as to what to do with me if you were in charge of my care.

I am pretty sure that those perplexed looks harbor the seeds of special educational policy that affect children such as I and my classmates

So, let me say again: “Hello, I am in here and I am one of the worlds greatest fans of life. So why I ask, if I am locked up inside my head with only my family and a handful of very special teachers to read my mind, am I confined to a separate class and separate building?

Is it because I will never be a player in the game of life.  Let me clue you in, I already am, but I need your help in opening more doors for me. Part of the game of life is being a fan of those that do it well. I want to be there with them every day cheering them on.

Why do you separate me and my classmates from my non disabled peers and their teachers, do you think we have nothing to teach them about life and we don’t understand the game of life already?

And do you not realize that putting us in our own building shutting off from the normal flow of general education we are even isolated from the normal sights and sounds of normal general education activities.

We want to play the game inside the park, not the parking lot, interrupted with an occasional peek when you play the national anthem or give us a salute on our way out into the world or an occasional invite to dinner. We want to come early and watch the whole game, inside the park.

As far as I am concerned your primary function is to include us so we can teach you where we wish to belong and teach our peers how to read our minds. Our basic need is socialization not isolation.

My name is Haley Hilt, I am a 13 year old resident of this district ‘and a student in the special education program at Maple Hill School. I am developmentally delayed, as the pros say, and neither walk nor talk. I also have intractable epilepsy . That said, I am definitely not what I appear to be. If you ask all my favorite teachers, past and present, you will find that when I am on top of my game I am a truly unique individual with a lot of cognitive ability and great wit. Yet I find myself confined to a non general education building in a school district outside my home district. It lacks the delightful chaos of the school I once attended which was a general education elementary school (Red Mill Elementary). I miss the laughter filled, riotous behavior of the non disabled children that filled the hallways and assemblies of that school.

I am here tonight with my Poppy. We are partners in writing a column for special needs kids entitled Chatting with Haley and Poppy, wherein this presentation is published. This column is an outgrowth of our testimony before the Food and Drug Administration on issues related to my CDKL5 deficiency disorder (CDD). The column is published by the International Foundation for CDKL5 Research. Our focus is on special needs children with impaired communication skills and limited physical abilities.. Obviously when such skills are impaired, children such as I are often excluded from many conversations and activities, as well as classrooms, and buildings where our non disabled peers are educated.

Let’s be blunt. There is not a single elementary or secondary school teacher or parent for that matter who has not dealt with the issues fitting in or belonging. In fact, it is part of the daily dynamic of all classroom behavior. Brene Brit, noted author, in an interview on NPR On Being with Krista Tippett, related that in a focus group with middle school children, one child stated, “Fitting in is when you want to be a part of something. Belonging is when others want you.”

But let’s face facts, as I said in a previous column: I can’t talk; I can’t sign; I can’t write you a note; I can’t walk up to you and introduce myself; Yet I yearn to fit in and be part of everything, So let me ask you, “do you want me?” Without you on board I will never belong.

I know my fate: there may be no accolades for athletics or high academic honors; however, that does not mean that I don’t like attending a ball game or watching practice on my home field after school or attending an assembly in my own school building where high honors are passed out.

As for my future, I will not have a job after I age out of this gig. As educators you are constantly assessing the skills of my non disabled peers and guiding them thusly? You assess my skills and you are guiding me to where? For many children like myself, going to school is the highlight of our social lives. That light may go out when we graduate or drift away. I would like to think that you might want to do all in your power to keep that light burning.

My dignity is always at the ready to stand tall just as yours. I rely on you to see wherein my dignity lies,to trumpet my skills or the humanity I present.

My fantasy is to have older kids, who aspire to be professionals on whom I will always rely, walk me across your stage when I graduate to trumpet my progress and relay the lessons I have taught them. They are your future physical therapists, speech therapists, doctors,social workers, teachers and scientists. So I ask you, when will they join me to pave this path?

And finally, there is a lesson I and my peers can teach; we can share with them our manifest limitations and they will see the grace and dignity with which they can be accepted.

If you isolate me those lessons and my dreams evaporate. So, we ask you tonight to join us in creating a model plan for children such as I so we don’t just drift away.

So let me close with a quote from the late Jean Vanier (1928– 2019 philosopher, theologian, and humanitarian: “I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes.”

Poppy and Haley

Postscript: The meeting went well. It was known we were coming and we were welcomed with deference. It will have an impact, in fact there is multi district meeting coming up soon that will incorporate the issues we raised.

I did however sense the weight of thoughts unsaid that we all feel all the time. We represent a burden that few want to share: “as in your a saint, I couldn’t do what you do!” Furthermore, in today’s world the burdens on public education are vast and the dollars are sometimes spread thin and someone must be on the end of the line. The worst of these thoughts will never said to our face but may be elicited in honest public commentary subsequent to the publication of an article on special education of the severely disable, such as one by the NY Times.

One commentator stated it clearly; it is harsh and troubling: Tragic though these severely disabled children are, it is a tremendous waste of our limited resources to expend vast amounts of energy and time in the classroom to try and follow the absurd “NO CHILD LEFT BEHIND” act. There is a great difference between showing your average child to have compassion for these unfortunate children, and allowing the entire school system of the US to cater to unrealistic parental demands for inclusion of the severely disabled into the mainstream. Little will result for society other than to consume huge amounts of teacher time for these severely disabled children….

I want all of us to consider the mission that the CDKL5 community and hundreds of other autism spectrum communities are on: IT IS THE ERADICATION OF THE SYMPTOMS IF NOT THE DISORDERS THEMSELVES. One might aver that the work of our families and those of thousands of world wide groups focusing on central nervous system and genetic disorders are revolutionary and will result in economic and productivity benefits never seen before. Simply put our children, and ourselves are awesome assets not liabilities.