I Would Have Aborted

By Princess Peach Tart
Posted Monday, June 20th, 2016

There is a letter that has been going around recently. A mom tells of her fear and her experience carrying a child with Down Syndrome, and tells the doctor that encouraged her to abort to, in so many much nicer words, go suck an egg. Her daughter is 15 months and absolutely beautiful, with a smile that could light up a room. My younger daughter is four, also absolutely beautiful (parental modesty, y'all!), with a laugh that never fails to be passed to those around her. She also has autism, is somewhere on the middle of the spectrum. And as I was thinking about that letter I realized something. Had I been in that mother's shoes, had I had warning about my daughter's condition, I would have taken a very different road than she. Before I'm ripped apart for admitting I would abort my autistic child, please hear me out.

I am one of those people who always knew they wanted to work with children. First babysitting job at 12, summers as a camp counselor, and college in the education field. Specifically special education. If I may toot my own horn, I know a thing or two about children, especially special needs children. When a friend has a concern about a behavior their child is showing or a developmental milestone they haven't met I'm often one of the first ones they call. I love doing the work, and have worked with special needs children and adults for the better part of a decade. However, as I found out, none of this really prepares you to have a special needs child. Because they're not your child. They're not the little bundle you brought into the world, held in your arms, and dreamed of a bright future filled with every possibility imaginable. You work with them, you get to know and love them, but in the end it's a job, and if you're offered a better one you can move on, which is something you can't do with your own child. I was woefully unprepared to have a baby with special needs.

I knew something was up with her when she was very young. She was born in September, and the first inkling I had that something might not be totally right was in December when we put up the Christmas tree. The way she fixated on the lights was something I had never seen. Babies like blinking lights, so who doesn't expect their infant to love a tree covered in them, but this was different. She stared, even when she was picked up and interacted with. She didn't make eye contact much, either, which was another hint. But then came the worst of it. Months and months of inconsolable crying and screaming whenever she was awake (in retrospect I think she was having problems with the tactile input of wearing clothes, the only times we could get her to really calm down was when she wasn't wearing anything). The effect this had on my family was obvious to anyone watching: my older daughter was acting up in attempt to get attention while my husband and I were at each others' throats due to stress and lack of sleep. No one is more surprised than I am that we made it through as a unit, but I remember spending those months practically running through the grocery store, convinced that everyone we passed though I was a horrible mom because I couldn't get my daughter to stop crying.

When she was two I finally admitted that her speech delay and some of her behaviors pointed toward autism, and started the process to get her formally diagnosed. This meant months of people coming into our home to do evaluations, therapies, and hold meetings about her progress. Once again my older daughter was feeling neglected and resentful- she thought she'd be getting a little playmate, not someone who needed constant attention from her parents and had no interest in being social with her. I tried to balance that, got my older daughter involved in classes and activities so she could socialize, but too often when she needed me I was helping with therapy or on the phone with this doctor or that social worker trying to set something up.

We finally got the 'autism' diagnosis at two and a half, and since then so many thing have changed, little things you wouldn't really think of until you're in the midst of everything. For example- my in-laws live eight hours away. Well, eight hours with my older daughter. Ten to twelve with the younger one, because straps are a trigger and we have to stop often to let her calm down/calm down ourselves. Bathtime can be tricky, because water being poured on her head can be a trigger. A sudden siren going off near our house while we're in the yard playing? Trigger. And when I say 'trigger' I don't mean she might get mad, I mean we could have a full-fledged 45 minute meltdown that can include anything from hitting, kicking, throwing, intentional self-harm, and accidental self-harm all while she's screaming at the top of her lungs. It's one of the most heartbreaking things I've witnessed.

Through the therapies my daughter has grown, but she's still far short of her peers. She still needs to be prompted to eat on occasion because she's so fixated on something else. As of now she's not toilet trained and is showing no signs of being ready. She still needs help brushing her teeth and her hair and getting dressed. Without prompting she would fixate on something all day. We found out the hard way that she's a wanderer when she decided to walk a quarter mile away from the house when my husband and I had a miscommunication on who was watching her. This means her future is very much up in the air, as is ours. My husband goes to a daddy/daughter group with my older daughter, and he would very much like to include our younger as well, but we're not sure if that's possible. Are the other girls going to be okay with a child in their midst who still wears diapers, doesn't speak much, and will probably won't participate much in the girl-centered activities? Will my husband be able to watch her on their camp outs without fear of her wandering off? Is this break in her routine going to be something she tolerates, or is it just going to trigger episodes? And thinking even further- is she going to be able to get a job? Live on her own? Hold a steady, healthy relationship? Or are her father and I going to be caring for her for as long as we can? And when we're unable to, who is going to?

I worked for a year in a home for people with special needs. My husband worked in one as well, but for a different company. Mine was a good company, fully staffed with people who cared, and ran smoothly. His company was AWFUL, woefully understaffed and the staff they could keep were often drug users who called off more often than they were there, and run as cheaply as possible. The disparity  terrifies me. Good companies often have waiting lists that are years long, and if the worst happens unexpectedly your child may be put wherever the state can fit them, which too often is in the subpar centers. The concern also becomes "am I going to wind up burdening my older daughter with her sister's care if I'm too old/too sick to care for her myself?" People's attitudes towards special needs adults doesn't help, especially when many of those people are in government and see social services as an easy expenditure to cut.

I love my daughter. I am her advocate, I am her teacher, I am her caregiver, and mostly I am her mother. I would do anything for my little girl. I have given up a job to make sure she could get her proper therapies. I accept that I'll spend many parties monitoring my daughter rather than socializing freely. I have absolutely no regrets about everything I've done for her, and I live to see her smile when I open her door in the morning, to hear her say "mommy!" when I pick her up from school, and for the occasional hug or kiss that wasn't prompted. But if I went back five years, to when I was pregnant and got the blood work to see if something was wrong, and had that blood test been able to catch autism, I would have aborted. Not a question, even as I'm tearing up at the thought of not having my little sweetheart here anymore. The whole experience of being her mother has been the most emotionally, physically, psychologically, and spiritually draining and difficult experience I've ever had. Being a special needs mom is not for the weak, but you will never know how much strength it takes until you're in the midst of it. I do not judge the mom who wrote to her doctor, but I do think the other side needs to be heard. This is not something that stops with a smiling 15 month old, or a laughing 4 year old, or a dancing 10 year old. This is not something that will be over when the child turns 18 and can legally be considered responsible for themselves. This is a lifelong commitment. Some people are given the choice to make that commitment, some had no idea what was in store. And it's a commitment that's not for everyone.

About the Author:

Mother of two, wife of one, professional giver of zero fucks.