“As Luke aged, this discrimination continued and became more apparent with each passing year. By the time he was 14, there wasn’t a single place I could find that would include him.”
The author’s family
Fourth in a series about the disparate treatment of individuals and families affected by severe autism.
By Jess Ronne
My son Lucas hasn’t necessarily been kicked out of anything because I conduct a massive amount of due diligence and research prior to him attending, but he has been excluded from many activities that were created specifically for special needs families. Lucas is my profoundly disabled 17 (almost 18!) year-old son. He has severe autism, ID, and numerous other physical diagnoses. He will require total care for the rest of his life. I often say that being Lucas’s mom has taught me more about what it means to be a human being, how to be kind, and how to truly see others - more than any man (or woman) behind the pulpit ever has; however, I wish that some of these lessons would translate to the rest of the world of as well - especially those who claim to serve the disabled population.
Lucas was well received almost everywhere until around 6 or 7 years old. Even our local YMCA accepted him into their daycare program which allowed his father and me a much-needed break. Friends and family offered to help and babysitters were easy to find. He was a cute little boy who loved to watch Veggietale videos and who was in diapers. The diapers weren’t a big deal to most - while he was little - and then he grew and the cute little boy started to have opinions and would scream, and he was still in diapers. When he was 8 years old, we moved from Michigan to Tennessee. There was a school district about 5 minutes from our new home that we wanted our children to attend even though it was technically not our district. We met with the principal who agreed but said we’d have to provide transportation. We brought the kids the following day to tour the school, and the principal had a chance to meet Luke. I received an email the next day telling me that my 6 typical children were welcome to attend but that they could not and would not accommodate Luke. They said his needs were too great and they didn’t have the accommodations to change his diapers. That was my initiation into the world of discrimination - because that’s really what it is, right?
As Luke aged, this discrimination continued and became more apparent with each passing year. By the time he was 14, there wasn’t a single place I could find that would include him - after-school programs, summer camps, the YMCA, and vacation Bible schools (and I called them all!) and you know why they wouldn’t include him? Because he wasn’t capable of using the toilet independently. He was still in briefs, that was the deciding factor in every single case - even the ones that served the special needs population.
Last year, we moved back to my hometown state of Michigan with high hopes that the situation might be different. Friends and family welcomed us with open arms and suggested numerous opportunities within our county for special needs activities and camps I should look into for Luke. I did, and one after another said that he did not qualify due to the toilet issue.
“It is beyond frustrating to me that we, as a society, claim to accept everyone and everything in this day and age, but we can’t accept an individual who needs help with bathroom issues.”
I finally found one overnight camp that would accept him, but they also said if there were any problems we would have to get him immediately - even if it were at midnight. That seemed like too big of a risk to take mentally and financially for a weekend of desperately needed respite and for a child who had never spent the night away from home. So, we passed.
We have finally found an amazing private respite provider who has no problem with diapers, and I thank the Lord for her. She exemplifies what it means to truly accept all as they are and accepts Luke exactly as he is.
It is beyond frustrating to me that we, as a society, claim to accept everyone and everything in this day and age, but we can’t accept an individual who needs help with bathroom issues. Is this really the barometer that we’ve reached? Even in the world of disability?
Come on people, we can do better than this. We have to do better than this.
Jess Ronne is an author, speaker, podcast host, documentary producer at caregiverdoc.com, and caregiver advocate. She is the founder and executive director of The Lucas Project—a non-profit dedicated to providing recognition and respite for special needs families. She and her husband Ryan live in Michigan with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga she can be found at www.jessplusthemess.com, on FaceBook https://www.facebook.com/coffeewithcaregivers, or purchase her latest book, Blended with Grit and Grace.
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