Monday, January 11, 2016

My Life: SLP & Mom of a Child with Developmental Delay

Life can be quite ironic at times. My job and home life is surely proof of that very thing.

When I graduated with my Master's degree in 2004, I was excited for my first job working as a speech-language pathologist for a local school district. In college, I had taken all the required courses, completed my internships, and had a significant amount of my clinical work with children with autism. Fresh out of college, I knew that I had a lot to learn but was ready to take on the challenges that were ahead of me.

I loved my job in the school. There were a variety of cases I saw in the pre-school and elementary classrooms. I especially loved the pre-school children as I could be silly and playful with them. Some of the children I had were difficult cases. I did the best I could at the time with the knowledge I had. But, I often wondered what life was like for these parents of the children with more significant delays.

During my second year of my job, my husband and I were thrilled to be preparing for the birth of our first child. My co-workers threw me a baby shower three weeks before I was due. Little did I know, it would be the last time I saw them for some time.

That night, I went to bed thinking I had overdone it at the baby shower. But a few hours later, I realized that I was in labor when my water broke. Jaycee arrived shortly after getting to the hospital, and it was a thrill to see our sweet baby.

Then things took a different direction. She wasn't breathing well and needed medical care at a bigger hospital. Later, we found out Jaycee had Down syndrome, an AV canal heart defect, and was in congestive heart failure.

My baby was medically fragile, and I could no longer work full time. I did not return to the job at the school telling myself if things ever settled down, I may find myself there again. For six months, I did not work at all. I cared for Jaycee at home becoming her "nurse" giving her medications, counting every ounce she drank, starting her early intervention therapies, and managing her 3 month stint of home oxygen.

When I rejoined the work force, I decided the best fit would be private practice with my primary focus being in the early intervention program. My goal was to keep my caseload small so I could work a couple of days a week giving myself time to be at home with Jaycee. I enjoyed the work and has a fresh perspective as a mom of a child with special needs.

The lines between my home and professional life blurred for several years. Jaycee had a number of feeding difficulties including a weak suck, texture aversions, and poor chewing that I took upon myself to treat. I taught Jaycee sign after sign trying to build a vocabulary while we waited for verbal speech to come. She had several professionals addressing her delays but I felt it was my duty and my obligation to help Jaycee at home too.

Before I knew it, Jaycee was ready to start pre-school. Three years prior, I was leading IEP meetings at this same pre-school. Now, I was the mother in the IEP meeting with a sick feeling in her stomach. Now, I knew exactly how those parents felt.

Honestly, my professional life was emotionally difficult the first 5 years of Jaycee's life. I knew developmental milestones well, and it was obvious that Jaycee was behind. When I would score a language test of a child with significant delays, I would instinctively know that my child was almost always "worse." It was hard not to compare and stay detached when the struggling children I was working with were making progress with verbal speech as Jaycee remained mostly silent. Sometimes, I envied those parents who wanted their child to say a specific phrase while I would just be happy with a word, any word! Yet, the biggest part of me understood their worry, stress, and problems created in daily routines because they had a child who couldn't communicate well.

It seemed like once Jaycee started elementary school, something changed in my brain. I was able to just measure Jaycee against Jaycee. I didn't compare children I was working with to my own situation. I somehow learned to separate the two worlds better. Perhaps, this was made possible since I gave up working with Jaycee at home about that time and just let her own team help her. I got rid of our stack of worksheets, oral-motor tools, flashcards, and list of skills we were trying to develop. I think we both felt relieved when I relinquished the role as Jaycee's extra therapist and became her mom (and continued as her untrained nurse). In a way, I felt quitting was doing Jaycee a disservice. But, it was actually allowed me to develop a different relationship with Jaycee.

Later this year, I will mark my 10th year in private practice and in the early intervention program. I still haven't made it back to work full time due to Jaycee's frequent hospital admissions, daily health needs, and multiple specialists she sees. I suppose I'm still waiting for things to settle down a decade later. The school job that I thought I might return to one day feels more like a wish now that an actual possibility.

Being Jaycee's mom and a speech-language pathologist has been good at times. I honestly would have been lost without my training and my access to materials. My background in sign language was helpful. My interest in oral-motor and sensory feeding issues all came in handy with Jaycee for sure. However, it's been hard for me at time to separate the two roles. It was hard for me to shut off that therapy driven, goal focused mind and just be a mom.

Jaycee has definitely made me better at my job. I can more easily relate to children with limited understanding and expressive language. I can also relate to parents much better as I have walked in their shoes. I understand first hand how a child's lack of verbal communication can cause the child and the communication partner to feel frustrated. I know what it's like to wait and wait for your child to speak. I know how frustrating it can be when it feels like your child isn't making any progress.

I also know the satisfaction that comes as a therapist when the child you are treating makes advances. And I know how wonderful it is when you are the proud mom of that child! The neat thing is-some days I get to have both!
"I'm a speech therapist. What's your Super Power?"

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