babyminding

“Jacquelyn’s Story” is a series of posts about my daughter who has a neuro-behavioral disorder. You can read the first post in the series here.

Today Jacquelyn is seven years old, and this is a big day for our family for a couple of reasons. Not only is it our first child’s birthday, we are also one day away from her last session of occupational therapy. We enjoy a much different Jacquelyn today than we did about 13 months ago when we received a diagnosis of multiple sensory processing disorder and motor delay disorder. Jacquelyn’s biggest issues last year continued to be a pronounced aversion to noise and touch. Her aversion to and anticipation of these types of sensory input caused her to have a clinically significant level of anxiety, to the point that it was interfering with her ability to enjoy a “normal” life. I didn’t yet understand how auditory and occupational therapy could help her with these issues, but I was about to find out…

We first began Berard Auditory Integration Therapy, which “efficiently retrains a disorganized auditory system and improves hearing distortions and sound sensitivity.” It requires listening to some strange sounding music each day through special headphones. My husband and I waffled back and forth about whether or not this expensive therapy would help Jacquelyn. We finally pulled the trigger and hoped for the best. We woke up early one morning before school to get started. I had crayons and paper ready to keep her busy while she listened. As the music started, she threw the headphones on the counter and screamed. The specialized music she had to listen to was painful for her. I assured her it would help and told her she had to do it. She put her head in her hands after putting the headphones back on, resigning herself to what was to come. As the crocodile tears dripped from her eyes onto the coloring pages in front of her, I silently thought, “Please let this work.” She trusted me, and I was leading her down an unknown path.

I am not exaggerating when I tell you that within 10 days she, without being prompted, began to use the bathrooms all the other children at school were using rather than the bathroom in the nurse’s office. Her fear of flushing toilets has subsided enough for her to walk into a regular bathroom without being forced to do so! This was huge. The improvements continued from there, and we saw an immediate improvement in her general anxiety level.

We began occupational therapy soon after. Her therapist taught us all about proprioceptive input and how joint compression can override tactile defensiveness. All that is a fancy way of saying that the more she jumped, pushed, pulled, and compressed all the joints on her body, the more she would tolerate touch. It worked like charm! Before long, she was able to give real hugs and interact with children even when they were rambunctious. I quickly realized it wasn’t that she didn’t WANT to interact with children, but her fear of being touched prevented her from doing it. She had a lot of catching up to do, and the past year has consisted of weekly therapy sessions at a sensory gym as well as an intensive at-home program called NeuroNet. There are many more victories, small and large… too many to list. Seeing her interact with other children typically and calmly has brought me to tears several times over the last year.

As we finish professional therapy and transition to only an at-home program, I feel it’s important to point out that Jacquelyn’s SPD hasn’t been cured, nor do I believe it can be. Is she still super sensitive? Yes. In fact, just the other day she screamed and nearly cried at the sound of toast popping out of the toaster. She yelled that she would NOT make her own toast until she was eighteen years old. Just today, she bristled and began to grunt when her classmates crowded and bumped her while I tried to take a birthday picture. She still can’t stand being in the sun and has a lot of self-imposed rules about how and what kind of clothing and shoes she can tolerate. She can’t ride a bike without training wheels and even then, the bike has to move slowly on flat surfaces only. She can’t stand the feeling of water on her face. Automatically flushing toilets can still cause a panic attack, depending on what kind of day she is having.

But here is the light at the end of the tunnel…all these therapies, combined with my constant “training” approach to her behavior, has given us an immeasurable gift. It is the difference between a child who self-injures at the sound of a door knob clicking and a child who runs out the back door to play. It is the difference between a child who paces and speaks like “Rain Man” and a child who can say “I don’t like that noise.” It is the difference between a child who, at times, was nearly crippled by anxiety and a child who giggles and enjoys life. It has given Jacquelyn a fair shot at happiness, and that is all I ever wanted.