Editor’s note: October is Down Syndrome Awareness Month. Amy’s daughter, Larkin, is the inspiration for Larkin’s Place at the YMCA. Larkin is 12 years old and her health has been stable since 2009.
By Amy Armstrong
If your child receives special education services, he or she must have an Individualized Education Program (IEP). That’s the law. An IEP is an important legal document. It spells out your child’s learning needs, the services the school will provide and how progress will be measured.
Reading through it brings a plethora of emotions but I typically stay in my lane, which is a strength-based discussion of what Larkin CAN do and where she is headed. Our school district is fully supportive of writing her IEP this way and her team knocks my socks off every single time we meet. The determination they have that this girl can and will do everything she is capable of is easily read by the gleam they have in their eyes, the smiles on their faces, the laughter shared, and the hard work they pour into goals that reflect their belief in her.
All is good and positive … until one has to read the paragraphs of deficit required by the state to show why she won’t participate in certain assessments. The team tries to cushion these blows but they can’t get around requirements of darn politicians who want accountability (which I fully understand).
“Larkin’s instruction and programming is significantly different from her same-aged peers” is an example of multiple deficit-based statements that have to be made because someone much higher up the education and funding chain needs that.
Yeah, that hurts. It breaks me. I admit that fully and embrace the grief that it brings to the surface. One can’t hide from those emotions and if one tries, you pay for that with a full deck of anger mixed with fear. Growth is hard.
So I sob as I read the documents and I let my heart ache. I feel all the feels that come with the loss of what might have been but I don’t wallow there. I can’t. I owe it to Larkin to stay in the lane of all things HER and the reality of HER versus words on a piece of paper that back up what she needs from the state.
I do a lot of public speaking on advocacy, parenting and IEP process. I always, always, always remind those who work with parents/caregivers that the grief that comes with having a child with a disability is forever, and they may not know where that parent is in that process.
It is an ocean and sometimes the waves take us under and every once in a while there is an undertow we don’t see that dumps us on our heads. Meet parents where they are in the process and understand that the grief, anger and fear can derail everything. It’s a forever-set of emotions to navigate that sometimes last five minutes or five years.
It is what it is.
I cried again at the start of her transition meeting from elementary school to middle school, because it was begun with a celebration of Larkin and something she had achieved that day. The absolute love and admiration this team has for her is beautiful. We pushed through the meeting having clear expectations from me and from the school team to guide the structure and transition.
Part of this goal work included adding in Snapchat so that Larkin can play and socialize with her same aged peers. My second-grade twins play the app with her and she loves the different filters that have cause/effect or those that add details. Fun can be worked into this so I was excited to add that to the list of things that would help create friendships with others.
I was home working when my text went off with Larkin’s teacher sharing two pictures from Snapchat. This particular filter added makeup, enlarged the eyes plus added a button nose and ears.
Her teacher was cracking up because Larkin was beyond annoyed with her at the start of the process but in the next picture was the dogface (where if you stick your tongue out the dog tongue shows up) and Larkin was laughing.
I couldn’t move past the first picture. I was paralyzed for a few minutes staring and then I felt sick. It took me a few more minutes to process what I was seeing … because it was more importantly what I was not seeing. The filter had removed the almond eyes and unibrow characteristics of Down syndrome.
I was looking at Larkin without the piece that has medically defined her since she was three weeks old. Sharing the picture with my husband Andy he had the same reaction — stunned and the oddest emotions. It made me profoundly sad and aware of the loss of the dreams we have for all of our children.
The rabbit hole of what might have been; the face looking at me was a mirror of what Andy called “sad Amy” because in Larkin’s expression she was clearly annoyed. I saw myself in her. I saw one of her younger sisters at age 11. It’s a dangerous rabbit hole that we can’t fall into because it’s not the reality and robs us of loving what is present and beautiful.
I stared at the picture for a long while and had a very painful, ugly cry. I’m still crying.
There is a line from No Country for Old Men: “Well all the time ya spend trying to get back what’s been took from ya, more is going out the door. After a while you just have to try to get a tourniquet on it.”
The undertow took me and dumped me on my head, and the grief is weighing on my chest. Honoring that grief and processing it is so very important because if it is ignored then it’s just going to pop up in other ways that will affect productivity and emotional well being. It doesn’t mean I won’t find my feet again but the loss is real and there will be more times in her future where I am reminded of what might have been — and that is OK.
Middle school is here and all things Larkin will be interesting as she navigates the new space and people. She is amazing. She has come so far with the help of many wonderful doctors, nurses, teachers, staff, therapist, friends, and family. Those facts are not lost down the damn rabbit hole, they are right in front of me and thankfully without any filter.
Amy Armstrong is a community advocate and through volunteerism she works to increase awareness of disability issues. Amy is a dedicated mother of four children. It was with the birth of her daughter Larkin who was born with Down syndrome and further diagnosis of catastrophic epilepsy that Amy found her passion for helping families and individuals navigate the complex world of disability. She is the driving force behind Larkin’s Place, the foundation of the Stephens Family YMCA and a fully inclusive recreational facility designed to support individuals and families dealing with life-changing diagnosis or disabilities. Amy lives with her husband Andrew in Champaign and prides herself on her kitten-herding skills of one son Chase, Larkin, and twins Brin and Erin.