Crying In The Car Included

I read an essay by a special needs mom about an interaction with her daughter’s school that ended with her crying in her car. I could relate 100%. I am that mom… crying in the car included.

I never expected to find myself in the special needs realm… I do not think many parents do. I planned on my baby’s health issues to sort of magically disappear when she came home from the NICU. I thought she was going to be like every preemie I heard about. They left the NICU and POOF they caught up without ever to have to think about being a preemie again. People love recounting those anecdotes. No one ever shares the stories of the ones that do not catch up. Only a few mentioned it to me as being a possibility.

Despite the taboo of discussing it, I knew there was a chance that she would have medical issues. I read just about every preemie book while my baby was in the NICU. I was prepared for the typical preemie woes of digestive and respiratory issues. A bigger issue started to make its appearance while addressing a small digestive issue. A doctor noticed an abnormality in my baby’s motor development. It could have been a minor quirk. However, it ended up being the beginning of something bigger.

My baby has since missed every motor milestone for her adjusted age. Some days, it seemed like she was regressing. Her pediatrician was quick to write a prescription for Early Intervention. The plan was to wait a few months until an appointment with a specialist and incorporate the specialist’s suggestions. It seemed like a reasonable plan. I really hoped the specialist would have helpful information for us and tell us what to do next.

The day of the appointment came. I was excited to have another opinion on board with my baby’s wonderful health care team. I was desperate for direction in how to help my baby. I naively walked into the office thinking it would go well.

At first, I was asked how my baby was doing. I answered, “She’s a little behind.” The doctor rebuked, “Ma’am, your baby is going to be evaluated at her adjusted age. You can not expect these babies to perform at their actual age.” I let that roll off my back. I wondered if they deal with a lot of idiots who did not know about adjusted age.

Five minutes into the evaluation, the doctor snapped, “Why is your baby not able to hold up her head?” I yelled in my head “I SAID SHE WAS BEHIND!” In reality, I was stunned silent. I could only respond with a shrug. My baby performed poorly, if at all, on one test after another. I was ready for that. I knew how far behind my baby was before the appointment. That is not what bothered me about the ordeal.

After the evaluation, the doctor and nurse talked at me rather than with me. I was lectured on how I should not prop my baby in front of a TV and leave her there (My baby has never watched a minute of TV). I was told about how I should work less hours (I am a stay at home mom). I was told that I need to hold my baby. I felt like they were insinuating that babies in developing countries’ orphanages received better care than my baby.

They did not ask about what my baby’s home life was like or about all the Early Intervention therapies. We did not discuss options for helping my baby. I was aghast. I wondered if they read someone else’s file. Maybe I was not speaking the same language or we had teleported into the end of another baby’s appointment. There was not one helpful bit of information that came from that interaction. I felt as if they were accusing me for causing her delays.

They handed me a stack of exercises for much older babies as I quietly gathered our things. I struggled to maintain my composure as we left. In the car, I grabbed on to the steering wheel, rested my head on it, and sobbed. It was more than a waste of time, it was a kick in the gut. It was the first time I found myself so desperate for direction, ideas, or guidance and given absolutely nothing.

I let a few days pass as a cooling off period. I wanted the emotion to dissipate and to review the appointment with new eyes. I wanted my account of the appointment relayed to the pediatrician be as non emotionally biased as possible. The pediatrician listened as I told her about the appointment and cried. The pediatrician made me laugh at the situation and explained that we had other options. She said this (having a preemie) was hard enough and I should not have to deal with such non sense. I followed her instructions to seek another avenue.

We have that alternate appointment a week from tomorrow. I am optimistic about it. I feel like we will obtain good information to help my baby.

I tell this story because other parents may come across health professionals that, for whatever reason, are a poor match for them. (Out of at least 50 doctors since my baby’s birth, there have been three that I will not go back to.) If you feel this way, it is OK. Go with a plan B. Find another doctor or get a second opinion. You do have options. Do not be afraid to advocate for your baby. No parent should have to cry in their car after an appointment.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

4 responses to “Crying In The Car Included

  • judy

    I am so afraid this will happen with Agnes down the road because she has a rare disorder and I’m afraid doctors will write her off because she might die soon anyway.

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    • woodra01

      The story got better for us. Charlie’s pediatrician helped us find another doctor. He helped us figure out that Charlie needed PT, OT, and feeding therapy. She has made great gains. If you run into hassles on one avenue, try another (and another, if necessary) until you get Agnes what she needs. She’s adorable and I think she’s going to be tough like Charlie. It may not feel like it, but you are already doing an amazing job.

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  • Heather L

    We had a similar experience at a feeding clinic. We left the NICU (after 112 days) with an NG tube and a follow-up appointment that I assumed would solve all our feeding difficulties. We left said appointment with this advice, “He needs to eat more.” No solutions, no therapies, no suggestions…just, “He needs to eat more.” I was beyond devastated. I just wanted my baby to eat normally. The feeding issues slowly got better; 3 years later, feeding/nutrition/weight gain are still our largest issues from prematurity!

    Like

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