Thursday, December 13, 2018

Holiday Program of Christmas Yet to Come

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.





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:

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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.


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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. 




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.

13 comments:

  1. This makes me so sad!! I am a SPED teacher in a classroom for students with communication defecits (the main diagnosis being autism). I can not tell you how many school performances I have dressed in all black and sat behind the risers while making physical contact with my friend so they can participate. How we have done EXTRA practices in our class so they can be comfortable. How we have watched videos of past performance to model appropriate behaviors. These are the things that childhood is made of and should never be denied a child regardless of diagnosis!!

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  2. This makes me so angry. You are doing great and advocating for your children. I truly hope this story receives the national attention it deserves and that it never happens again.

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  3. I am a FSUD regular ed teacher our SPED students participate in our Gen Ed performances. It's not an issue. In fact, we never even think twice about it. Students in Special Day Class are included in grade level field trips, performances and activities...just like everyone else. I am so sorry it isn't the norm.

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  4. If this doesn't make you mad then what will? Is there no way a group can take this to court and make them follow the law?

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  5. I'm heartbroken for you. I am a paraprofessional in a substantially separate moderate needs classroom. Basically, a functional academics program for 7th and 8th graders with cognitive and developmental disabilities. (the majority of our students right now are children with Downs Syndrome) Five years ago, I had the privilege of accompanying a student to percussion class. She decided she wanted to play drums, the band teacher was approached with "how do we make this work" (not "is it possible to do this?") The band director and I worked together to help the student be successful. Now, she is a contributing member of the high school band AND marching band. I'm lucky enough to continue with her on this journey.

    Last night, I attended the winter chorus concert with 3 of my students. They were phenomenal. The choral director is fabulous with my kids. I can't tell you how many times I heard, "I don't care if they don't sing...as long as they are having fun up there." This low key, no pressure attitude allowed my kiddos to come as they were...and you know what...they all sang every song and did a great job. Next week, I will accompany another student on stage in his percussion debut.

    It CAN be done. Our children CAN be met where they are, and allowed (wait, no, encouraged) to participate along with their general education peers.

    Take a break, take care of you...then keep fighting. Encourage your school administration to observe schools who are promoting Inclusive Practices. That's the push in our district right now, and we're making strides. It can happen. It's exhausting to fight all the time. I'm sorry you have to.

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  6. It's time for legal measures. This can't continue!

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  7. Stay strong mama! I have been there! It's not only schools...I have had my daughter passed over for haircuts when she was the next one because no one wanted to deal with a kid on the spectrum. The funny thing is, if someone had said they didn't think their skills could handle her moving I would have been ok...but to just ignore us like we aren't even there? It makes me crazy that most people exclude our kids and only give them negative attention. Trying to educate people is an uphill battle but one we can't lose. It's like being in battle mode all the time. Thank you for what you are doing and giving a voice to our kids.

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  8. This is a sad situation, but I am reminded when of the time when the school asked the mother of a student with severe autism if she wanted him to march for graduation and walk across the stage. She did and his sister volunteered as his support person. The mother requested he be the last one to walk across the stage following a very long program. It did not go well. He became confused and sat down on the stage and could not be budged. He had made trial runs before graduation, but the crowd on the stage and the crowd in the stands were not present. There were many suggestions for his graduation, but this is what the parent chose. It could have been customized and been a lovely experience in a more settled environment like the huge Commons area, or outdoor atrium.

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  9. This was happening at my son's school until I spoke up and emailed the principal. The problem I found was the other parents didn't seem to care so I had no support on the matter and everyone knows there is power in numbers but anyway I did get it accomplished and my son just had a musical and what they did is had them perform first which worked out great. He is 10 and nonverbal so he couldn't sing but just him being included felt so wonderful. He did tap on an instrument. Also, what is this saying to the reg Ed students when schools do this crap because kids learn by what they see and they will grow up thinking that we shun away kids with disabilities and that is setting a bad example.

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  10. you are an amazing advocate. Broke my heart too seeing your story on insta and fb. Keep fighting for what's right!

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  11. This was so moving!! Thank you for fighting for what is right. So much love.

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  12. For several years there was a little boy with autism in my class. At our Christmas program the first two years I sat at the back of the risers with him next to me as close as he could possibly get. The third year, he sat next to me and sang with the class, the fourth year he stood by himself and performed the entire concert. The last year he was in my class he stood onstage and played a small part in the play and did a wonderful job. It just took him a little bit longer to get there. We should not exclude any child who wants to be a part of any performance. That is so wrong!!

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  13. This sucks. Thank you for making your voice heard and standing up for your kids. I love your suggestions and actually received an email just like the one you offered for my son's Kindergarten graduation program last year. I was elated that they made efforts and accommodations to have him included. He needed an EA to sit with him the whole time, but he was included. It breaks my heart that not all children are treated this way. Keep fighting mama!

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