Autism: A Mom Shares the Real-Life Journey
In the Beginning
I can remember when I knew I was pregnant with our first child. I could feel it. I couldn’t wait to take a home pregnancy test. On the earliest possible day, I went to the drug store and purchased an early test and took it while at work. It was positive.
I had a great pregnancy, and man, was I going to make sure this baby was going to be perfect. I took the non-synthetic vitamins prescribed by my naturopathic doctor instead of the .99 prenatal vitamins. I had a daily mindfulness practice and continued to teach and practice yoga. I ate exceptionally well and rested when I needed to. I was so happy and stress free.
I had planned and spent hours visualizing the most beautiful home birth experience with positive affirmations posted above the bathtub. Forty-two hours into agonizing back labour, that plan was drastically changed, and I headed to the hospital with a baby who was posterior. After an additional 20+ hours, our beautiful baby girl was finally born into this world.
She had an elevated temperature so to my dismay, she had to be on antibiotics and monitored in the Pediatric Intensive Care Unit. I remember walking the long hallway many times in the middle of the night to breastfeed who the nurses called “the loudest baby in here.”
As she grew, the experiences that I had with those close to me with children were growing more and more distant. We would joke and label our kid as “spirited” and “wild and free,” but inside, every now and then, I would know that our experience was a lot different. I began to lie and say things were better than they actually were. I started to get distressed when friends, as great ones do, would offer empathy and share that they knew what I was going through…but I knew they didn’t.
We Were Not Okay
Months passed. Things only got more unmanageable at home, just in time for our amazing second daughter to make her seamless home birth appearance into this world. My husband and I began to isolate ourselves, as we felt so alienated when we saw others’ experiences with their children. We were hostile when we would hear the “troubles” others were having with their kids, often saying to ourselves “If only THAT was our biggest concern.”
I started to do research and some days this gave me comfort that yes, she is just a child with lots of needs, but things are fine. She is fine. But other days I would plague myself and feel panic-stricken about what we did wrong for her to be experiencing troubling times far more often than not, and now, for her baby sister to also be subject to the constant chaos that had now become our lives.
Fast forward a couple years. Our daughter is almost four years old. We have ruled out any type of illness or ailment. She has no allergies, no diabetes, her thyroid is fine, and no strep. She is so healthy, and for that, we are grateful, but can you imagine a piece of yourself hoping that your child has something physically wrong with them? I hoped she had diabetes like her grandfather so that all of these hardships could be summed up into a malfunctioning pancreas. There are fixes for that.
We took our daughter to her second appointment with a psychologist on her fourth birthday. This was after the two-hour emotional explanation and month by month outline my husband and I had provided the doctor with who then validated that our experience was far from normal. This was the first time we’d ever told anyone the complexity and depth of what was going on.
After a comprehensive assessment, we learned that our daughter was diagnosed with high-functioning autism.
I have been a social worker for more than 10 years. I worked in developmental services for half of that time, and now I have a daughter with autism. I feel so helpless. She is upset and screaming more than she’s happy. I took the non synthetic prenatal vitamins. I ate the organic food. I meditated. How is this happening to us?
The cycle of grief— which I would work in with my clients every day—was now my reality.
A Day in the Life
As we sit now, about two months after our daughter’s diagnosis, things are not easier. We have connected with the services and waitlists. We have received an outpouring of support from those close and not close to us. We are blessed, but life is tough.
My husband and I often talk about how well our daughter “masks” her struggles while she is out—which we have learned is typical for girls with HFA, and we’ve gotten good at masking too. After a weekend full of day-long struggles, with many tears shed by us all, and each morning being traumatic, I walk into work Monday morning to be greeted by my colleagues asking how my weekend was.
“Seven days of the week my daughter is screaming at me for at least 45 minutes from the moment she wakes up for reasons such as my eyes looking a certain way or my nose being too greasy, if I smile at her sister, or if I walk too fast or too slow according to her that day. Before I come to work every day, she has broken down for up to two hours while I tried to console her younger sister who is afraid, while also looking out the window waiting for a neighbor or a passer-by to phone the police or children’s services because she is screaming so loud.
I cry almost every day on my way to work and I often dread going home. I have panic attacks that wake me up in the middle of the night and my marriage is often tense because we have no down time to be married. We have no respite. Weekends are actually my least favorite thing and I often prefer to be at work because it is the only time that I get five minutes to myself and it’s all I can do right now to cope.”
Instead, I reply, “My weekend was great, thanks. And you?”
Where to From Here?
The reality is, I don’t know. For now, we fill out the paperwork. Tell our story time and time again. Share the tough things about our daughter. And perhaps we find some healing for ourselves.
We try to stay positive.
We celebrate the wonderful people our daughters are.
We remember to breathe.
This article was featured in Issue 98 – Fresh ASD Guidance For A New Year