“Come back to me…” I whisper as I hold my 3-year-old daughter who is once again slipping into the unknown, an unknown that I have few tools to help her navigate because the treatment options we’ve explored have mostly told us that they don’t currently have availability or staff.
These are the only words that come to my mind as I rock my beautiful angel Avery, coaxing her to return to me after yet another horrific meltdown; an occurrence that feels as if my soul is being ripped out of my body as I chase onto the battlefield to save her.
My daughter with autism sometimes loses control of herself and looks at me in pure terror – almost as if she is screaming “help me!” at the top of her lungs, but all I see is her hollow, vacant stare. A stare that suggests that she is just as desperate as I am for something — anything! — to help her escape this hell that she often finds herself in.
“A stare that suggests that she is just as desperate as I am for something — anything! — to help her escape this hell.”
She throws herself around the room, digs her nails into her eyelids, and hits the floor.
And I run to position my hands under her head to cushion the blow. I learned early on to position my palms, not my knuckles. The palms hurt less, and as I do this I plead, “Avery, Avery, it’s ok…come back to me baby, come back to me. Mommy’s here, Mommy’s always here.”
I imagine if she could communicate, she might tell me that her body feels like too much. That she feels an intense desire to crawl out of her skin — crawl out and escape to the other side, a side that she desperately yearns for in order to cope with her sensory processing diagnosis — a diagnosis common with severe autism.
When she enters this foreign realm, she attempts to regulate herself by banging her head, flailing her arms, or thrusting her 35 pound body across the room — a dangerous form of self-medicating but something that she does because no one else seems to have any answers or treatments that help.
“Come back to me…” I whisper again as I move her from the floor to the bed to cushion the blows. I also try to apply pressure by laying on top of her, massaging her, and slowly rocking her.
“Some sort of help or treatment or magic pill, please, anything to assist her, to calm her.”
But she doesn’t have the words required to respond, and it seems as if most of the doctors and specialists also don’t have the words or staffing needed to answer my desperate plea for help. Some sort of help or treatment or magic pill, please, anything to assist her, to calm her, to help her live a life of purpose and meaning.
We’ve tried many things including in-home ABA therapy but found it ineffective because home is her safe place, and the pressure to improve or perform was too much. She began to avoid her playroom where the therapy took place, and this broke my heart. She also participates in occupational therapy, speech, and early intervention in our local school district. These have been helpful additions, but we are only given 4 hours a week because of staffing and resource issues. We are hopeful that we will return to ABA in the clinic but have been on the waiting list for months because of staffing shortages.
As we wait for help, I do my best at home because we live in rural Wisconsin. Many of the therapies require a two-hour car ride, and she wouldn’t tolerate this well. I try to keep her busy and engaged, but I wish there were more options, especially options where we live. I also wish that every center didn’t have a waiting list because of staffing issues. My child needs help immediately.
When Avery was younger the meltdowns would last hours, but now they only average about 30 minutes; however, in these moments it feels like days, weeks, and sometimes decades have passed.
And in a blink of an eye, she is still. A new song begins to play on TV., and she sits up. She starts babbling and clings to me. She has returned: tired, hungry, and thirsty after her service on the battlefield. A war of one waged against herself.
She came back to me this time, but I do wonder “what if she doesn’t return someday?” Will there be anyone who can help me? Help us? Will the medical community even care?
But this is not the time for “what ifs.” Instead, I wipe the tears from my face. I need to be strong for her and for my 11-month-old in the other room playing quietly while his sister fights her battle.
Children, like my Avery, who suffer due to the lack of options, are one of the greatest failures of the medical community. Not only do they fail to recognize the pain and torment that these children with severe autism face, but they fail to acknowledge that their families also live with a similar pain.
Part of this failure involves flat out ignoring families like mine. We arrive for our appointments full of anticipation and hopeful for answers only to be sent home on a waiting list or worse yet, zero solutions or options. Sent to our homes, behind closed doors and silent agony which we often keep to ourselves because the reality is too much for the world to bear. The world is not ready for our lives, but the world better get ready. The medical community also better hop on board because statistically speaking (1 in 44 children have autism) this is not something that is going away, and it’s time for the broken system to acknowledge the broken families because we need help now.
Our lives and our children’s lives may depend on it.
This post was written by Lauren. Lauren is a mom to two daughters, Avery who is 3.5 years old and Skylar who is almost 1.5 years old. She lives in Wisconsin and is a registered nurse turned mostly stay-at-home mom. She shares her story to spread awareness about autism at Avery’s Amazing View (https://www.facebook.com/averysamazingview/).
This post was originally shared on the National Council for Severe Autism Blog at ncsautism.org/blog