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.