Fighting for the Health of my Special Needs Stepdaughter

Four years ago, my step-daughter, who is profoundly affected by autism, came home from her day programme. Her dad was away, and she walked in the door with her caregiver. She looked up at me, and suddenly her face lit up in a smile. In the six years that I had known her, it was the first moment that I knew for sure she loved me. That smile had nothing to do with being home or her wanting a treat; it was a pure, unprompted, beautifully expressed act of love. Kilee smiled because I was home; she smiled because she loved me.

I didn’t know how much I wanted it; I didn’t know I had been waiting for it, but there it was and it brought me to tears of joy. I thought she loved me, but when she smiled that day, I knew because I felt it, and any lingering shadows of doubt were gone. Kilee loved me.

There have been many hard hours of step-parenting with Kilee. Days when I have met caregivers at the side of the road because Kilee was out of control in their vehicle. Plans that were cancelled again because Kilee’s behaviour meant we couldn’t leave her, that she could only be with us. Then there was all the hiring and firing of caregivers – caregivers who quit, judged, and who got hurt when Kilee would lose control and they were caught in the crossfire. Not to mention all the complexities and competing needs that come simply from blending two families. I cried a lot. I cried for all of us. I cried in frustration for the pressure cooker our house had become.

I don’t think it was a coincidence that the week that Kilee’s behaviour changed I happened the one in charge. I had been around mental illness my entire life and had developed a keen ability to sense it. My husband was away at his biggest conference of the year; I was holding the family fort. Kilee wasn’t acting in her normal way. Her tantrums were somehow more intense, her behaviour completely irrational. Things began to escalate as the week went on, and by day three I said to my husband, “This isn’t just autism.” That night, Kilee ripped all the pictures off her bedroom wall and tore the canvasses into tiny, tiny pieces. I came in and she was howling so desperately, I thought her head might begin to spin on her neck: anything seemed possible. I took her to the hospital the next morning. Our most trusted caregiver and her husband came with us, and I went ahead into the hospital and warned that security might be needed. I was afraid Kilee could hurt people as we brought her in.

I was also fully aware that I was taking my husband’s little girl to the hospital without him. I took her because her body was bruised from throwing herself off the porch stairs and pushing herself into the wall and pulling chunks of hair out of her head. I took her to the hospital because this couldn’t just be autism. Even at its worst in the past, it never looked like this for Kilee. Kilee was put in a padded observation room. Then she was given a sedative and I was told it was autism. We were sent home and given an emergency mental health number.

I believed with every cell of my being, this was not only autism. Something had switched and although some of her behaviours looked similar in intensity and longevity, they were different. Now an electrical energy and rage was burning through our little girl’s body and mind.

When we went to our developmental psychologist, he informed us this was a very severe case of autism. We described the intensity of her tantrums and it wasn’t until she tantrumed out of control in the waiting room – screaming and pulling out her hair – that he suggested we might need to see a psychiatrist. Through a small miracle, a psychiatrist came to our home. Shortly after, Kilee was diagnosed with Bipolar Disorder, OCD, and Generalized Anxiety Disorder.

It is very difficult to diagnose mental health issues in a young person like Kilee, someone who has autism, low cognitive function, and limited language. Yet, through the fresh eyes of her psychiatrist, we began to see how her biochemistry could be driving some of her behaviour. For the first time in a long time, it felt like there was hope. Maybe we could find some new strategies to help our beautiful and amazing girl.

Many people have shared with me their sadness in learning their child has Bipolar Disorder; my husband felt this same sadness. Maybe it was because I am a step-parent, but my reaction was different – I was relieved. Relieved to not be told again that this was “just autism” and there was nothing anybody could do. Relieved that there just might be another answer and ways of helping Kilee we had not yet tried. As parents, we are always riding that line between accepting who our child is and pushing on his/her/their behalf to have and experience their very best life. We love and accept Kilee exactly as she is, but we also wanted her suffering to stop if it was at all within our power.

When the first drug packed the weight on her, I held firm that the benefits were more important than the health issues associated with the extra weight. And slowly but surely, Kilee got better. We began intensive behavioural therapy, hired a new care team and gave her the medicine her body needed to balance itself. Kilee is not cured – that was never our expectation – but her medication definitely plays a significant role in her improved quality of life.

That summer was a breakthrough for me. It showed me how deeply I cared for this girl, that I would fight for her – even with her own father – for what I believed to be what was right for her health and happiness. I fought because I saw how vulnerable she was, how much she needed my strength, and that my own brand of stubbornness might help her have a better life. I fought because I saw how much I needed her too, because somewhere along the way, Kilee became one of my own in my heart.

My bond with Kilee is a forever bond. It is also a bond I sometimes feel burdened by; it’s a bond that I didn’t understand the complexities of at first, but it is now a bond rooted deeply in mutual love. Her smile for me that day and the way my heart lifted in response prove it.