Tuesday, August 14, 2018

My Ironic Life

"Did your daughter get you interested in this profession?"

I've been asked this question a few times over the years when people discover I am a pediatric speech-language pathologist and mom to a child with Down syndrome and a severe speech and language delay.

"No," I tell all those who ask. "I worked as a speech-language pathologist (SLP) for two years in the school setting before I had my daughter. After she was born, I went into private practice focusing on kids birth to age 3 for more flexibility."

I get why people may think it was my daughter who inspired me to help other children like her. It would seem really ironic if it happened the other way around, but that is how it happened.

My first baby was born with Down syndrome and a heart defect. I was new at motherhood, and I had much to learn in general and especially with her diagnoses. When she was born, it was early on in my career, and I was refining my knowledge there too.

I have now been Jaycee's mother for 12 years and working as an SLP for 14 years. You may wonder what that has been like for me.

Honestly, extremely helpful and, at times, extremely difficult.

In one respect, my training and education has been beneficial. When Jaycee was gagging on solid foods and textures as a toddler, my feeding education was invaluable. I don't know how I would have survived those months without that knowledge. That was a stressful time for both of us, but she made progress and achieved a regular diet by age 3.

With my professional knowledge, I knew what to do to help my daughter's low muscle tone in respect to her tongue protrusion, drooling, and feeding. I purchased chewy tubes, massagers, and gathered up other supplies to exercise her lips, cheeks, and muscles in the face. I knew how to help her, but Jaycee often didn't want my help. I found it very frustrating. I successfully treated other children with these same tools and approach, but she refused to work with me. I should have left it alone, and I eventually did as I passed the items on to the speech-language pathologist who was getting paid to treat her.

As common with Down syndrome, her language was delayed, but I knew how to stimulate her language and what milestones were important. When Jaycee needed to learn sign language as a toddler, I already knew several signs and had experience teaching toddlers how to use sign language. That made it so much easier! I had confidence that I could help her, and she flourished in sign after age 2.

Achieving milestones was a long process for her like any child with a developmental disability. As a therapist, I knew the milestones too well. I couldn't shut that part of my brain off. I couldn't stop thinking about the next skill to develop. All the toys I purchased for her early on had a milestone in mind.

My professional brain just couldn't appreciate what Jaycee was doing as a toddler because I was too focused on what skill was next. My perspective on her during those first three years is something that I really wish I could go back and have a do-over. I wish I could have seen her through the eyes of a mother during that time and not a therapist. I certainly had trouble separating the two.

As her delays remained large in pre-school, I understood the reasoning and research behind the suggestion that Jaycee needed a speech generating communication device when the diagnosis of Childhood Apraxia of Speech (CAS) was given. The device didn't scare me. I had worked with them before, and I recognized how it could expand her vocabulary. I embraced her "talker" and helped program the device to say things that would help her communicate with us. There again, I was grateful for the confidence my experience gave me.
The Home Screen on Jaycee's Communication Device
When Jaycee started elementary school still barely speaking, I knew the odds of her developing clear verbal speech in full sentences was slim. It was a sad realization, but, at that point, I decided to encourage the total communication approach allowing her to use signs, words, and her device to communicate. I suppose some would say I gave up hope that she would really develop some functional speech. I had in a way, but it felt more like acceptance. It was the moment that I realized I had done all I could do, other SLPs had and were doing all they could do, but her Intellectual Disability, CAS, low muscle tone, and delays made verbal speech development difficult. I decided to embrace her abilities and be joyful for the communication she had. I completely shut off the therapy part of my brain when I looked at her. It was nice and long overdue. I never "worked" with my child again, not on speech-language goals anyway.

A few years ago, Jaycee started speaking more. It was a very exciting time to hear her say so many new words. While her speech is comprised of mostly vowel sounds, I am grateful for what she can say. She's worked so hard. She's come so far. We both have.

It's been a difficult balancing act- raising my child with a severe speech and language delay as a speech-language pathologist. It took me years to figure out how I could use my knowledge to help my daughter and support what other therapists were doing with her while not making her my own personal project. Some of the things I did in her life were beneficial and other things, I simply should have left to the SLPs treating her.

I think any mother wants what's best for their child, but it's often not clear how to make that happen. I was certainly confused at times as I navigated Jaycee's delays with my professional knowledge. Parenting requires continual learning and adjustments, and I eventually figured out how to parent my child-not do therapy with her.

Yes, I am a speech-language pathologist and the mother of a child with a severe speech and language delay. Life is full of ironies. This is one of them.

Life is also full of blessings and love. Our relationship is proof of that!

1 comment:

  1. I'm an Slp in early intervention with a child with autism...a disability where parents feel extreme pressure to /cure/ their children. It was the hardest balancing act of my life and exhausting and draining. My favorite kids were the quirky ones and I always had a knowing I'd have a child with special needs and I was good at my job and loved empowering parents, but after 14 years as an Slp and Autism mom .I had no more to give and made a career change. Best decision for me. I just wanted you to know that you are not alone in what can often be a lonely, isolating journey. The live for your daughter shines through!!


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