I love musical theater. Some of my best memories with my mom are special outings to the theater as a child. I’ve carried on that tradition with my niece, and hoped to continue with my daughter.
When she was 3, our city’s performing arts center was doing a show based on several Ezra Jack Keats stories. What a perfect first exposure to the theater, I thought! And it was playing when my mom was visiting, so we turned it into a special whole family affair.
As we walked into the theater, I could see awe in her eyes. There was a beautiful set decorating the stage with snow gently falling on it. The hum of excitement so common to the theater was in full force. And then one of the staff members asked her if she’d like to sit up front on my lap. YES! OF COURSE! It was the perfect day until…
The play started. Two actors ran out screaming and giggling, having an innocent snowball fight. My daughter completely lost it, screaming in terror. I dashed out the door with her, my husband and mom following, and she and I both cried. She was clearly scared, but couldn’t explain why, and I was devastated and confused.
My daughter’s brain is easily the most fascinating thing in the world to me. The way she can make connections on her own, learn new tasks rapidly, and carry on an intellectual conversation with an adult is remarkable. When she learned to read at two years old, basically on her own, I watched in awe as I thought it was completely unbelievable. Who is this kid?!?
And yet, she is very much a young child, and the intricacies of her brain certainly have not come without struggles. A year and a half ago we were finally able to confirm what I knew for some time. She has several processing disorders that have strong effects over her abilities to navigate her daily life.
The most pronounced of these is sensory processing disorder. If you are not familiar with it, I encourage you to check out this website for more information.
I think it’s easy to read down the list of aspects of SPD and say that it sounds like every child. And honestly, I do think that most kids and adults have aspects of this to a lesser degree. We all have things, be it a sound, texture, or smell, that bother us. But for our daughter, it was the extreme sensitivity to her surroundings, the severity of the reactions, and the panic and anxiety that really set our daughter apart and made daily life difficult.
I remember one time when she was 2 1/2 and there was a fly in the house. We live in Colorado, so this is truly a rare occurrence. It landed on her once, and she had a complete meltdown because of how it felt on her skin and the buzzing sound hurting her ears, and I just couldn’t get her to calm down. It was devastating to watch, as nothing really comforted her other than rushing off to another room and closing the door, hoping that there was not a fly in there, too.
Here is a short list of the biggest impact of SPD on her young life:
Avoiding anything that looks like a theater, until very recently.
Unable to wear clothing with tags or that are tight, such as leggings.
Getting her in her car seat is still a fight because it is always too tight.
The dogs barking cause her to run away and hide. As does my hairdryer and electric toothbrush.
She does not do well in crowds. She still won’t go into her class at church because the kids are too noisy and move around too much and that’s overwhelming for her. She eventually felt comfortable at her preschool that had 14 kids a day, and now does well at our micro school that has 24 kids. But she did spend most of last year reading a book under the picnic table at recess time at preschool.
She does not want to play with another child unless she trusts that they will not scream at her, push her, etc. She has a very limited circle of friends that she wants to play with on a regular basis, and typically one-on-one is better.
Despite these many challenges, most of the time when I think about her SPD diagnosis I reflect upon how much she has grown since that day. She can go to the theater, she greets guests at the door instead of hiding under a table or in a closet, she goes right into school instead of crying that she’s afraid.
As her mom, it has been difficult emotionally to watch her struggle, and I had to get really creative with accommodations that wouldn’t make her feel ostracized.
What has been most eye-opening for me, personally, was being the parent instead of teacher for the first time. I can’t tell you how many IEP meetings I’ve sat in on and contributed to, and looking back I know I understand how it was probably such an overwhelming experience for each and every parent as we listed all of their child’s deficits and struggles in school. I am grateful that the IEP team where I used to teach really emphasized the positive for each child, but I know that’s not always the case. Teachers and administrators are busy, and it is easier to get right down to business instead of focusing on the many strengths and communicating them to the parent.
But from the other side of the table, I realized the disservice that so many parents get by hearing only the negative and only the areas for growth. I now understand what it is like to hear all of the struggles that your child has, a few random suggestions, and a plan that really doesn’t jive with everyday life. I came home that night and cried, not for my daughter, not for our situation, not for the challenges I knew she would have, but for the millions of parents that come to teachers and specialists, desperately needing a glimmer of hope, and instead get a list of deficits.
Our daughter has learned many coping strategies for her SPD, and she is much less anxious in new and potentially overwhelming situations. I am so grateful for the experts, friends, and colleagues that support her and continue to help us empower her to be brave and advocate for her needs. It is getting easier for all of us, and that’s something to celebrate.
And just what did we do this past weekend? Why, we sat in the front row at a production of Mary Poppins! The orchestra and mics were loud, the lights were bright, the theater was crowded. And we had a blissful time.