This mom has one wish for her sons on the spectrum this year: Inclusion

By Chrissy Kelly | December 20, 2018

This guest blog post was written by Chrissy Kelly. Chrissy Kelly is a Mom, wife, writer, photographer, and World changer. She lives in the Central Valley of California with her husband Michael, and their two sons, Greyson (9) and Parker (7). Both boys are autistic. Read her blog "Life with Greyson and Parker." 

Although I’ve thought of little else since this happened, it’s hard for me to go here now. The story and my heart is raw, and true resolution just doesn’t exist without the passing of time. But details fade and deep pains are often replaced with dull aches and faded memories. I need to write while pain is still there and details are vivid. I need you to be there with me.

Last Wednesday I went to pick up Parker from school. I just think of him as my son in First Grade, but at school he has an additional label of  "Special Needs student with autism in a self contained classroom". As I waited for Parker, I heard children in the cafeteria singing. Their tiny booming voices echoed off the walls and filled my heart with the childhood joy I always felt in school. Memories that smell like crayons and hope and possibility. A innocence and magic feeling that seems to be missing from many experiences in Special Education.

I remembered a Holiday program was occurring at Parker's school, and I wondered if I had missed additional correspondence on it. While walking to my car with Parker, now holding my hand, we passed the school office so I popped in to ask.

The following is how it played out, as described by an article in GV Wire, written by Bill McEwen.

“When is the Christmas program?”
The secretary said, “Tonight.”
Question: “Who’s in it?”
Answer: “Kindergarten through fourth grade.”
Question: “Is Parker’s class performing?”
A phone call and then the answer: “No.”
Understand: Parker Kelly has autism. He is part of what is called a Special Day Class.

I walked to my car with my teeth tingling. My chest physically hurt from trying to understand what can not be understood. I saw my life of advocacy pass before my eyes. All the meetings I've gone to...where I made sure I didn't wear blue jeans and I didn't cry or act crazy or emotional or raise my voice- because that's how Special Needs parents are labeled and written off. Where I made sure to share- I’m on your team! Let's work together! Where I begged for my sons and all kids like them to be included and to be treated equally. Where I shared data and best practice and law and just a bit of my heart. Countless hours. Endless research and presentations. Federal Law backing all requests.  

It didn't work. It isn't working. It doesn't work- was all I could think on a loop. My stomach was inside out and I knew for just a moment I needed to chuck the data, and share my heart, as I did on this video

So far it's been watched 90,000 times. It's hard for me to watch.

We've received a couple of apologies, namely from our Superintendent and School Principal. We've sat down and talked and tried to understand the how and why which I still can't understand. I can't fathom how anyone doesn't see the magic I see in my boys. They weren't an afterthought, they were not a thought at all.

chrissy 1

Special Needs student have been excluded from this program for years. This was not a one time scheduling issue as we were told. This is the norm in many pockets throughout our District.

But it can't be anymore. At least not while I'm paying attention. Apologies pop like bubbles, but policies and change lasts forever. Attending activities like School Holiday Programs is protected by a Civil Rights Law: Section 504 of the Rehabilitation Act. In the educational system, it prohibits districts from discriminating against qualified students with disabilities on the basis of disability.  Schools are also required to provide students with disabilities with an “equal opportunity for participation” in “non-academic and extracurricular services and activities.” (MORE INFO ON SECTION 504 HERE)

No one from Special Education has shared any steps that are being put in place to ensure this doesn't happen again, so I created some that my husband and I will advocate for:

***************
To avoid future occurrence of this, I recommend that all Special Day Class (SDC) students be given the option to:

  • Practice for musical performances with their grade equivalent General Education peers.
  • Attend musical performances WITH these peers on stage (not as a separate SDC group).
  • Be given any necessary accommodations or modifications (Including but not limited to visual supports, aides, sensory supports, their designated speech device, duties alternative to singing- ex. bell ringing, program distribution).
  • Students should only be excluded at parents request, or when the nature of their disability is so severe that being included with General Education peers is not an option.
  • SDC parents should be notified when practice begins, as well as notified of the planned upcoming performance, which can include listing any specific supports that student will need.

Attached is an example of what notifying parents could look like. All Special Education Teachers, General Education Teachers, and Music Teachers must coordinate together and be given the appropriate staff and supports to execute.

chrissy 2

I want to turn our pain into action. I want Inclusion to be the cultural norm and an actual happening thing, not just a word. 

chrissy 3

And my only wish from Santa this year, is that the world will see the magic that I see in children like mine, not just in Christmases yet to come, but all year long.

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information, events, or services provided by third parties. The views and opinions expressed in blogs on our website do not necessarily reflect the views of Autism Speaks.

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