I’ve shared over the years how it feels to have a child who is considered severely and profoundly disabled and to have to acknowledge those words is an exercise in grief and acceptance.
A severe and profound exercise.
But accept it we have and grieving it will be a part of our life much like the seasons changing. It will wash over us in waves and at times I am at the bottom of the wave and feel like I am suffocating and then finally break free to the surface and catch my breath.
Choosing Larkin’s elementary school has been an experience that has taken me to the bottom, back up for a breath, and then immediately dragging me back into the undertow. Every year there is a great deal of commotion in our Champaign Unit 4 District as it pertains to schools of choice. Articles are written, parents investigate, complaints are lodged, and no one feels as if they are in control of what happens to their child as they begin a significant part of life and learning.
Welcome to my world.
I often find myself raging at articles and comments because if parents of typically developing children had a fraction of the difficulty of placing a child with disabilities they would need therapy and Xanex. (Both items are necessary at some point in life)
The process of choosing a school for Larkin was actually fairly easy. I had to base it upon her physical and safety needs. She needs to be in a building without stairs as she still is working on that skill and if stairs are involved in her daily routine then that is where she would spend the majority of her time. Coming down the stairs at home takes upwards of 5-10 minutes with support. That kind of time isn’t workable in her school life.
She needs a building environment that is temperature controlled without extreme changes between classrooms, hallways, lunchroom, etc. Children with Down syndrome have a difficult time maintaining body temperature and since we hit the jackpot of Epilepsy and lots of medications, Larkin can’t be exposed to hot/cold extremes because her body won’t adjust properly. The majority of her day would be exhausted and that isn’t workable in her school life.
She is a runner. Anyone with a toddler knows how terrifying it is when he or she bolt from you and think it’s hysterical to run as you chase him or her down. Imagine a child with a cognitive disability, 45 plus pounds, almost 4ft tall, who can open doors and take off in a flash. It is probably one of the biggest fears we have for our children and therefore I look for a school that isn’t near a major street or intersection.
Lastly Larkin would benefit from a year round or balanced calendar to optimize her learning potential and maximize her therapy time.
Mix those ingredients up and I have only one “school of choice” for her at Unit 4 and guess what folks ~ I am not even at the point of looking at curriculum.
There is however another program I have looked at for a few years as an option for her. It’s a program housed in our sister city of Urbana school district based upon a therapeutic approach vs. academic for a child with severe and profound disabilities. While all the children within this program ARE learning they are given a tremendous amount of one to one support and structure that is designed upon their own strengths and needs.
If I were to approach this by just looking at Kindergarten then yes Larkin would probably do ok in a typical classroom with an aide and she might even make it through part of 1st grade. I have had to take a look at the curriculum and supports through the longitude lens to see exactly how her school day would be through 6 years and it isn’t acceptable as it stands within Unit 4. It simply isn’t an appropriate education for Larkin and THAT is what she is entitled to and more importantly what she deserves and needs.
I formally observed the classroom in Urbana and I have known the teacher via others who have given input to her success and attitude and I met her a few years ago at a local disability expo. Her warmth and kindness struck me first and second her absolute passion to reach inside children who have severe and profound needs and pull out the beauty that is sleeping within.
I made it about 5 minutes in the room after introductions and getting settled for observing before I felt the lump in my throat and the hot tears stinging. It was an exchange inside my heart/head of amazement because some of the kids are so medically fragile it was heartbreaking yet they were spoken to with deep respect. For example, the teacher, aides, and nurses all used each child’s name, always touching them with love, and everyone knew even the smallest of ways how these children would respond individually.
That may not sound like a lot to a typical parent but using a child’s name and touching them as you say it gives a great deal of comfort to parents who have had their children called by a diagnostic code since birth.
I made it a half hour before the dam broke and my tears began and the voice shattered with grief. The teacher was so very kind and understanding and reminded me to be kind to myself and that the grieving process is fluid.
There was a typical kindergarten class next door so I popped into that room for a bit to see exactly how Larkin might fit in there. The kids were hysterical with their questions and comments for me, they were alive with energy and the room was busy with movement, fun, and learning. It didn’t take long for me to realize that Larkin would be lost in this environment without a great deal of intervention and support.
I stepped out of that room and stood in the quiet hallway peering into the windowpane of each door to both classrooms. Larkin is in a ghost world between the two right now but she would find success and support here. She would have the most appropriate education for her needs and that is all that matters to me.
Most of the past 3 years I have spent looking at the curriculum in the program and talking to other parents who have gone through it so I didn’t have many questions. I thanked everyone in the room and said goodbye to the children and left.
The wave crashed over me thoroughly in the car and dragged me to the bottom and there I stayed. I railed against Down syndrome, Epilepsy, medications, school systems, and I had one hell of a pity party as I drove to Art Mart for an ice tea and cinnamon croissant party favor.
I called Andy and I scared him at first because I couldn’t talk and he kept asking me if the girls were all ok. I finally choked out that everyone was fine and filled him in on the visit and as I talked to him I began to realize how very lucky we are that Larkin is currently stable with her health. She is mobile, looks at us, has a few signs, and is happy. I cried harder as I told him such because while our journey has been terrifying, it could be so much worse and we should be grateful for what we have.
Art Mart gave me not only my party favors but I ran into a friend who works there and he also happens to have a child with Down syndrome. Poor guy had no idea what he was in for when he asked “How are you?” with a big smile, but he was the exact right person because he understood how I was feeling and sometimes that is all you need in order to get out of the undertow and catch a breath.
Schools of Choice isn’t really “choice” at all as my friend Laura tells it in this perfectly written piece. When you have a child with a disability or as in our case “severe and profound” disabilities this is never about choice, it’s about writing an education plan for a child who will need so much more from a school than ABC & 123.
Larkin will end up where it’s best for her and she will thrive of that I have no doubt. I on the other hand will still need the occasional snorkel, fins, and Art Mart party favors for those days when the waves of grief are holding me down.
Someone should red flag this beach and set up cabanas
Hugs to you and your beautiful family as you ride this next wave.
Pass the Xanax. Thank you for sharing your story …. your words help so many, whether they walk in your shoes or more so, if they don’t. XO
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Such a moving post, Amy. I can relate. We’re about to start making arrangements for our daughter’s Kindergarten year. She has Down syndrome. You poignantly expressed what I’ve felt. I know what it’s like to have things pop up unexpectedly that grieve your heart. Things that are reminders of what my daughter might not get to experience. The grief is real. Not sure that most people can understand it, unless they have a child with special needs, too. Grateful that the grief is fleeting. My husband & I have talked about how sometimes we’d have a time of grief, but then we’d come home and see our daughter and spend time with her. We’re reminded of just how wonderful she is and what a joy she is and the grief fades. Larkin is blessed to have a mom like you, who loves her so much!