My Shift from Therapist to Mom of a Child with Sensory Processing Disorder

I am a Therapist Mother of a Child with Sensory Processing Disorder (SPD).

They never taught me about Sensory Processing Disorder in graduate school. I learned about sensory processing in the worst way possible. I was in a training for toddler mental health.

The professor was covering the topic of sensory integration. As the professor was talking, a check list started forming in my head:

They can have a hard time with mixed textures. Well my daughter can’t even eat solids and she is past a year old now.

They can have a hard time with clothes. My daughter won’t wear anything on her feet – but kids are like that, right?

They can be sensitive to noise and light. My baby has to wear sunglasses. She has since she was an infant. That happens.

They may have issues with the bath. My daughter refuses to go into the tub. We battle ever night. normal battle, right?

I left the class in complete denial. I thought – I don’t know about this toddler mental health thing – they think all toddler behavior is abnormal!   It took some time, but the realization started to sink in – my child, my only child, has Sensory Processing Disorder.

Ironically my new job was as a Toddler Mental Health Specialist with Early Intervention. I was like a double-agent. Therapist to parents of SPD children by day – mom to child with Sensory Processing Disorder by night. It was hard.

My child wouldn’t eat. She was starving to death – literally. She was diagnosed with Failure to Thrive. I felt like a failure. The Pediatrician assured me no child had ever starved to death. But, I watched her growth chart invert, as she refused to eat. She WAS starving.   I needed help.

Ten years ago, Sensory Processing Disorder was much less understood and I needed to get extra help and fast! Luckily, I had the knowledge and resources right at work. I reluctantly arranged for my own daughter to be assessed by the Early Intervention Team.   I worked for a large non-profit agency, so the people that showed up at my door didn’t know me and didn’t know what I did for a living. I was just a mom, like any other mom seeking services for her child.

There was the Speech Therapist, the Occupational Therapist, the Physical Therapist and the Early Interventionist all huddled in my small living room. I felt uncomfortable and self-conscious.   My daughter qualified for services. No surprise there. And an Occupational Therapist and Feeding Therapist started coming to my home once a week.

It was interesting to be on the other end of services.   The Occupational Therapist that came to my house worked for a different agency than myself and didn’t know my profession. She frequently criticized my lack of boundaries as my sensory seeking daughter climbed all over the couch or stood on the coffee table.

I always felt like a bad mom when she left.  

I never wanted any of the families I worked with to ever feel the way I felt. I made a concerted effort to be supportive and understanding when I was on the other side of services.  

As the years went on my professional and personal knowledge grew and expanded – and so did the struggles…  

She survived on four foods for many years.

She wore only cotton shirts and leggings.

I spent hundreds of dollars on clothing that was never worn.

I returned more shoes than I bought.

We never went to fireworks.

Baths were given standing up for over a year.

I had to give up on the idea of having a girly girl and keep her hair short.

I paid double the amount on haircuts to go to a kids hair salon with TVs for distraction.

I tolerated the judgmental looks from hair stylists as they combed through my daughter’s knotty hair.

I gave up on cute clothes and sometimes even matching clothes.

And then over time… things got a little better.

She no longer threw clothes at me.

I would find a pile left in her closet.

When clothes felt good – we bought them in every color they came in.

I bought packs and packs of the exact same brand of socks and underwear.

Her food list started to grow.

Her tolerance for baths and swimming grew.

She wore JEANS (stretchy ones), but they count!

Fast forward ten years and you would hardly know my daughter once had any struggles.  

When my second child refused any food except banana yogurt for six months – I was much calmer. When he had a hard time transitioning from shorts to pants – I got it. When he needed to change his underwear a bazillion times a day because he thought they were wet – I understood.

When my third child came onto the scene and started licking everything in sight – it didn’t freak me out…as much. When she refuses to wear shirts at home – I allow it.  

I am not that same young mom and therapist I was fifteen years ago. I eat, live and breathe anxiety and sensory issues. I am okay with being a double agent now. Sometimes the best helpers are those that are in the trenches right next to you.

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Other great books on Sensory Processing: