Today I paused from my writing to get an email from my ex-husband about our daughter’s weekend. Here are a couple of excerpts to give you an idea … When staff picked Kilee up from the Main House, they were informed that Kilee had been administered one dose of Ativan when she woke up agitated after yesterday’s violence. While on her way to the Beach House (her private home where she spends days doing crafts, baking and practicing self-regulation skills), Kilee had several single strand hair pulls.(this means she is pulling her own hair- usually a sign that she is escalating into a tantrum) Once at the Beach House, Kilee began working on a card for her dad’s birthday. Kilee finished the card, then continued doing crafts by drawing and cutting out her drawings. Kilee then had a high pitched scream. Staff asked Kilee what she needed, but Kilee did not respond. As staff was waiting for Kilee to respond, Kilee poured out an entire bottle of glue on the paper in front of her. Staff asked Kilee again what she needed. Kilee asked to go to the bathroom, but as Kilee got up, she ran into the kitchen and pulled a toaster out of a cupboard, followed by a bag of oats. Staff immediately intervened, trying to removed the bag from Kilee’s hands. Kilee flopped onto the floor with it, where staff was able to remove it from her hands.
Approximately 15 minutes later, Kilee appeared calmer, however, she re-escalated and again attempted to unlatch the door and grab at staff while having many high-pitched emissions, Self Injurious Behaviors, screaming, kicking, and crying. Kilee attempted to defecate on the floor, and also urinated. Soon after she again aggressed towards staff and got the door by the stairs completely open, where Kilee fell down
This is a small sample of three pages of Kilee hurting herself, hurting others, screaming, crying and being unable to communicate successfully whatever it is she is trying to.
As a mom, I feel the air suck out of my chest and my throat constrict with a scream of my own that life for Kilee is this difficult. It’s as though the entire weight of her unsettled emotion has landed on my rib cage making it harder to inhale and impossible to exhale. My most sincere wish for my first born daughter is that she feels peace, she feels love and she knows we are all doing our best to support her.
A little backstory; Kilee is autistic. Currently, Kilee lives with her father full time. When Kilee was thirteen she became strong and violent. There was a two year period where Kilee was at a wonderful school in a small special classroom but Kilee wasn’t having success in this environment and after being called in to pick her up at least three out of every five days I finally hit the wall. At home, she was urinating and defecating on the floor of her room most nights. She needed adult supervision 100% of her waking hours for her own safety.
Prior to this I had home-schooled her with an intense program from age 3 to 11 before spending two years in a transitional school setting with three teachers for five children. Kilee was a mystery. Unlike most special needs kids, there was no identifiable antecedent to her tantrums. It has always been as though she sees or hears or smells or feels something that the rest of us just don’t and this sets her off.
When she became dangerous to her siblings, I sat down with her father and requested either a full-time caregiver in my home or that he have her live with him. I honestly never thought he would offer to have her live with him.
He was excited for the chance to be her full-time parent. Releasing control seems to be a lesson that the universe really wanted me to get. First I am gifted with a daughter whose ability to interact and learn was directly dependent on living in an environment that was extremely controlled. Her diet was strictly enforced. Her sensory intake was monitored. Her ability to partake in outings like shopping for groceries or swimming in a public pool or a family dinner was extremely limited. It was clear to me that her needs were in control and I wasn’t.
Giving her care over to her Dad meant giving him control of what happened in her ongoing therapeutic program. It meant he was in charge of her medical decisions and it meant I had to step into a new role where my key job was to love Kilee.
I knew many people would judge my decision. I could have fought for full custody and probably won. The challenge with a kid like Kilee is that full custody means no breaks and it would also mean that I was responsible financially for her long-term care. I love Kilee enough to recognize that her father is better able to provide for her long-term living expenses and despite the fact that his choices for her are very different than mine would be, I know he makes his decisions because he loves her and he feels his choices are best for her.
How hard is it then to get an email when Kilee is nineteen saying she can’t see me because she is having bad week? How hard is it when I hear blame from both Kilee’s father and her workers as they tell me “she screams mommy when she is tantruming”? How hard is it to know that no one understands the choice I have made so that my other children have their turn at having my attention?
It is only as hard as I make it. Most days I am really good at not thinking about what other people think a good mom “should” do or not do. Most days I am strong in my belief that Kilee feels my love every time she sees me. Some days, like today, I have to work really hard to apply the lessons I teach other people about releasing a need to control to my own life.
- Have gratitude for the many things you have released control of. List them. You are gathering the evidence to support your belief that you can do this.
- Be gentle with yourself. Don’t let your inner voice engage in negative self-talk. If you don’t have anything nice to say to yourself, don’t say anything at all.
- Have a “shake it off” moment. A walk on the beach, a Zumba class, a round of golf.
- Adopt a supportive mantra like “if you’re going through hell, keep going” or “everything will be okay in the end, if it isn’t okay, it isn’t the end.”
- Meditate. It will counteract the fight or flight reaction allowing you to think more clearly and calm your release of anxiety-provoking chemicals.
Do you know someone who needs a reminder to release control? Please share this with them. Or if you recognize an area in your own life where releasing control is more difficult, please share it in the comments. You never know who will be helped when they can feel they aren’t alone.