What I've Learned From COVID-19 About Teaching My Daughter With a Disability
I was so excited when we moved to a new state in August. It was a new opportunity for my daughter. She had worked so hard to learn new skills and she was ready to shine.
When we sat down for the first IEP meeting the Special Education director barked at me, “We don’t do that here.” I cringed internally and tried to make compromises while trying to show the new school that my daughter was more than a label. She’s smart, funny and sassy…she matters.
My daughter, like many others, is labeled as having an intellectual disability. Even though she has never been able to be formally tested for it because she is nonverbal, visually impaired, and has multiple challenges the label stuck. It’s not the first time that she’s been grossly underestimated either.
Back when we were preparing for the little girl we were going to adopt and bring into our home she needed an emergency hospital visit. The doctor making rounds casually pointed out how delayed she was, her lack of speech, and was all around a jerk. My daughter’s response to his less than glowing affirmations? She bit him. Hard. I knew then that this kid may have many challenges, but she also had a lot of moxie.
I also understand where the director and teacher were coming from. I was a teacher too. Students like my daughter pose a unique challenge. I got it, but it didn’t make it sting any less. Sitting on the other side of the equation was an uncomfortable awakening to all the times I had shorted a student, and ignored a parent’s plea to look on the inside. Shame floods my soul, even today after tracking families down and begging for forgiveness.
But I wanted to get along. I thought for sure once the teacher and director got to know my daughter, they would see everything I did. That they would be thrilled when I volunteered to help make materials, research, buy items that set them up for success. Move heaven and earth and together we would unlock all this amazing potential. Those were my favorite parents when I was teaching. This would be a snap.
Well, it wasn’t quite a snap. If anything, it was an epic failure from the start. Maybe we just didn’t jell. Maybe the teacher felt threatened. When I asked for first grade curriculum after weeks of having the same curriculum my daughter had in preschool, I felt the tension build. Asking for activities that would challenge her were met with resistance. Everything was a fight and at the heart of it was a little girl once again being underestimated.
Then COVID-19 hit and it hit hard. My daughter was already home based due to her fragile health. In-home services stopped.The iPad became our lifeline to the school. While everyone was scrambling and wondering what would happen next, a little miracle happened. For the first time in her school year my daughter had access to her first-grade teachers. She heard their voices. She was able to be a part of something that was denied to her all year. My daughter came alive.
Sure she struggled with the work. Her main teacher was not willing to adapt it. So I did. But every time she did something new, mastered a skill, made words, did basic addition her pride grew. I timidly broached the school once again asking for more. The resounding “no” broke a piece of my heart and soul that will probably never heal.
I’m many things, but I’m not a fool. I know when to cut my losses. The school district won’t need to worry about us anymore. They will probably even think they have won. They silenced a parent who had the audacity to demand an education for her child. A parent who was classified as “difficult” probably. A child that they won’t have to worry about making extra efforts for. They won’t lose any sleep over us.
I’m not angry. Just sad. Because in this win they have lost so much. They have lost a chance to think outside of the box. To collaborate with a family. To catch the vision and see that there is so much more than a label. To work with a child and allow her to meet her full potential. They will never fully understand because until you live the dual life of an educator and a parent of a child with profound disabilities, you only can see the shadow of the whole truth.
COVID-19 taught us that my daughter needs people to believe in her full potential. It taught us that time is too short and too precious to allow her wings to be stomped on.
It’s time to raise the bar and let her soar.
Photo submitted by contributor.
Amy is a mom of two special needs children with multiple conditions. She enjoys reading, playing with her kids, and volunteering in her community.
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