The Unexpected Life of Being a Parent of a Child With Special Needs

How I learned to accept the child, and the life, I have

A few weeks ago, I was helping my 14-year-old daughter get ready for her school's production of The Lion King. I put her hair in a ponytail and made sure she packed her sandals for her costume. Then I ordered her three red roses in a presentation bouquet at the florist.

Watching Lizzy perform that night, with my husband and two sons beside me, my heart felt as if it might explode. It was exactly the type of proud parenting moment I'd always dreamed of – and even expected to have – ever since she was born. What I never expected was that she would be performing at a school for children with significant special needs.

Everything that led up to that night began when she was a toddler, and like so many stories of children with special needs, it is one of escalating tests, frustrating setbacks, and unexpected discoveries. Lizzy's speech was very delayed, so at her 15-month checkup, our pediatrician recommended that she start speech therapy. The therapist and I were soon concerned by her lack of progress. One day Lizzy talked through the session; the next day she wouldn't say a word.

Next we saw a pediatric neurologist who recommended an MRI. Lizzy was 24-months old. The doctor made sure to tell me that he was not one to routinely schedule this test for a child so young, but he was a little concerned about the size of her head and the shape of her eyes. That was incredibly scary to hear.

The results were equally scary. The MRI revealed major brain damage, but we don't know the origin or extent of it. We have never been given a name for the disorder that causes so much havoc in every aspect of our daughter's development. Lizzy is 5 feet 7 inches tall, but cognitively she has more in common with a 3- or 4-year-old than the teenager she resembles.

She has a knack for epic disasters. Recently she was out of my sight for perhaps two minutes and used the opportunity to crumple four sticks of deodorant into the grout in our bathroom tiles. I'll never get it all dug out.

As I was cleaning up the mess, she looked up at me with her big brown eyes and asked, "Do you still love me, Mommy?"

This is life with Lizzy. There are days when she doesn't speak a word. On other days, her teacher may send home a note about how she solved a math problem or answered a question that stumped her classmates. She is constantly defying expectations in wonderful and incredibly difficult ways. 

For years, I was consumed with trying to help her have a life that's as normal as possible. Once she was ready for kindergarten, we enrolled her in our school district's special education program. In her early elementary years, she spent half of each day in a class with neurotypical children and the other half with children who had special needs. The kids in her inclusion classes tried to accommodate her, but it wasn't always easy because Lizzy spends most of her time in her own world.

I both loved and loathed getting invitations to birthday parties. I accompanied her to spa, dance, and yoga parties, and exhausted myself striking a balance between keeping her out of trouble and giving her the freedom to play with the other girls. I would come home drained and depressed. My daughter didn't fit in this world. I knew it, and so did she.

Halfway through Lizzy's fourth-grade year, it became apparent that she needed more – and more specialized – support. Each day at school and at home was a real struggle. Behaviors that we had mitigated with medication – such as uncontrollable crying one minute and near catatonia the next – reappeared.

When I walked into the school for kids with special needs that our district recommended, I started to cry. The reality I had been working so hard to keep at bay was undeniable. Everywhere I looked, there were children in wheelchairs or kids lost in their own worlds, walking the halls accompanied by aides.

I loved that the teachers smiled when interacting with the children. I loved the cheery artwork by students that decorated the halls. I was impressed with the programs the school offered and grateful I lived in a community where such a school existed. I knew our daughter belonged here. But I didn't want her to.

And then I saw Lizzy's face as the admissions counselor took us on a tour. She was beaming. She looked more present than she had in months. At the end of the tour, we visited the class that was designated for her.

Lizzy saw the children sitting in a circle singing a song about the days of the week, and she lit up when the teacher told her she could join them. I cried seeing how happy my daughter was to start singing along. To instinctively belong.

She started there three days later, and the principal told me that they'd never had a child make a smoother transition in the middle of a year. 

Lizzy was happy, and her happiness made it much easier for me to enjoy the child I had.

She moved up to the high school this year, and I can honestly say she is having a ball. Besides acting, she's a cheerleader, Girl Scout, and member of the chorus. She even has a paying job on campus, putting caps on bottles for which she gets a paycheck.

My life with Lizzy is not the one my husband or I ever expected. I'm not the mom I expected to be either. But it has been a tremendous learning experience, and I've changed a lot in the process. I've become a fearless advocate for my daughter. I no longer have any qualms walking into the office of a top medical specialist and giving my opinion about my daughter's treatment. My husband will sometimes cringe when I do, telling me that I'm not the one who went to med school at Harvard or Yale. 

It's true. I didn't. But I have attended the "School of Lizzy," and I know her moods and symptoms better than any doctor. I know I have something to add to every conversation about her treatment and search out those professionals who appreciate that. 

I've watched her adjust to new situations and happily grow along with her brothers and classmates. I marvel at her ability to deal with the challenges she faces, and I learn to accept her situation by watching her manage.

This acceptance did not come easy, and it did not come quickly. FedEx didn't come to my door with a package filled with patience and understanding the day we realized how significant Lizzy's needs were. 

Back then well-meaning friends and relatives would constantly tell me that special people get special children. It was assumed that all I had to do was want to accept the challenges ahead for my daughter and our family and all would be well. 

In my experience, just wanting peace and acceptance isn't enough. It's been a very gradual process with progress and regression at every turn. I couldn't force or rush it. In the end, it was watching Lizzy grow into the person she was meant to be – not the one I wanted her to be – that has brought the greatest peace.