Tag Archives: Developmental Delays

First Week of Speech Therapy

Charlie had her first speech therapy sessions with her new program yesterday and today. I am hopeful she will benefit and make progress.

Charlie’s new speech therapy program is located in a local university. The therapist is a graduate student who works under close observation (watched on camera) by a speech professional (her instructor). At the end of the session, the student and professional discuss their insights and therapy plans with me.

During the past two days, the therapist got to know Charlie and observed her speech through play. The real work starts next week. I am interested to see how it goes.

During next week’s sessions, Charlie will have to ask for what she wants using PECS. Also, she will begin working on speech sounds. I hope that it doesn’t take long for Charlie to catch on. But, I’m also prepared for it to be a lengthy process.

Charlie’s speech and feeding have been the most frustrating of her delays. Mainly, because I have no idea how to help her. With her fine and gross motor skills, I could use hand over hand to guide her through movements until she was able to perform them on her own. I don’t know how to do something similar when speech and feeding is involved. It is a discouraging and helpless feeling.

I really hope this program works. I am out of ideas of what else to do.

playground OT

Charlie’s last OT session was at a park.

 

 

 


The Myth Of The Common Parenting Experience

After a brief recuperation period from my gall bladder surgery, it is back to business as usual. Charlie and I have resumed our regular activity and appointment schedule. However, something is different despite the familiar routine. Lately, I’ve been having the reoccurring thought:

There is no such thing as a common experience.

One of the things that I felt I lost when I became a micro preemie mom is the common parenting experience. Because of this, I struggle with envy and jealousy from time to time. It does not take long for a random parenting article such as “How Your Child Can Become Fluent In A Second Language” to pop up in my news feed and that pang of envy follows. Second language? We are desperate for a few words of a first.

I frequently battled the anger, frustration, and hurt that surfaced whenever I heard someone complain about a parenting problem I wish I had. Worried about having to pay future college costs? I’m busy scrambling to cover my child’s astronomical medical bills now.

Even though I’m surrounded by amazing people, I felt lonely and isolated. I secretly desired to rejoin the “regular” parenting experience. But then, something happened.

One night while seeking new blogs to follow, I surfed through countless sites. As I read through blog posts, I noticed that there were single parents, loss parents, gay parents, special needs parents, working parents, religious parents, holistic parents, adoptive parents, hospice parents, and a multitude of other parenting identities.

It clicked. The common parenting experience that I longed to be a part of doesn’t really exist. My observations over the next few days further supported the realization. I saw other types of parents at the store and at the playground. Not one of them was the same as the last.

I suppose the “common experience” is that everyone has their own unique experience and challenges. The grass only seems greener on the other side. Knowing this takes away from the bitterness brought on by envy and jealousy. I am starting to see beyond my own hurt. If anything, I feel less alone.

Charlie examines the slide before going down it.

Charlie examines the slide before going down it.


Apple Picking

Last year, we went to pick apples. It was the first time we had taken Charlie out after she came home from the NICU. Although the trip was short and simple, it had a lasting impact on our lives.

Charlie had been home approximately a month when we first went apple picking. Around this time, we decided that our lives in Northern Virginia were no longer going to work. Additionally, the isolation and precautions Last Yearrequired of post NICU life were wearing on me. To get away from it all, we decided to pick apples about an hour away.

After we arrived at the orchard, my husband was so nervous to have our baby out of the house that he worried about everything. I remember that the gentleman who took our family picture (first ever!) in the orchard asked us how many hours old our baby was.

Regardless, we had a fabulous time. We picked apples, had ice cream, and ate caramel apples under a sunny sky. I felt like we had broken out of prison.

On the drive back, we started discussing the possibility of moving away from the DC metro area. Additionally, we examined ways in which we could be better prepared while traveling with a baby.

Family pic

This year’s family portrait.

The short trip had provided me with the confidence I needed to journey out of the house with Charlie in tow (to some where other than a medical appointment).  At Charlie’s following appointment with the pediatrician, I asked about the recommendations and requirements to keep Charlie healthy while traveling out of the house. Our trips escalated from then on. We started traveling further out and for increasing amounts of time.

A few months later, we moved away from the DC metro area.

Today, we went back to the same orchard to pick apples (we live fifteen minutes in the other direction from it). This time, we were pros.

photo6


To Be Understood

Throughout the existence of this blog, I have tried with the utmost restraint to avoid weighing in on the “a preemie is a preemie” discussion. (It is the idea that having a 35 weeker is similar to having a 25 weeker.)

Personally, I thought Tatum at Ain’t No Rollercoaster did an amazing job addressing the topic the last time it went around. I am annoyed to see it being discussed AGAIN in the preemie realm.

While I find the “a preemie is a preemie” discussion irritating, it occurred to me that maybe there is some sort of misunderstanding.  I want to believe the reason it exists is due to miscommunication. Here is my attempt to clarify:

When I use the term micropreemie or talk about our three months in the NICU, I am not competing or trying to “one up” other parents. I am simply searching for understanding.

Whether others wish to recognize it or not, having a micropreemie (or baby with a long NICU stay) is a different experience than having a later preemie (or short NICU stay). This realization  became clear to me very early in my preemie journey.

Sometime in the first week after Charlie’s birth, I attended my first NICU class. Other NICU mothers were seated around the conference table talking. I quietly chose a seat and observed the other moms. I listened as they discussed nursery design, baby clothes, and plans for when they got home. These were all things that I was afraid to think about. I didn’t know if my baby was going to come home. It was impossible for me to think beyond that evening.

As I watched, I wondered what was wrong with me. Why was I so scared? Why was I so saddened by my baby’s birth? Why did I feel like my heart was breaking? These other moms could pull it together… why couldn’t I?

It did not take long for me to figure it out.

The instructor had asked each of the moms at the table to state their baby’s gestational age at birth. With the way things were ordered, I was last in line. The mom before me announced loudly, “My baby is the smallest baby here! My baby was born at 32 weeks.” I cringed. I wanted to crawl under the table and wished I could disappear. This was a contest I did not want to win. I must have been thinking about that for some time because the instructor had to prompt me. I whispered, “26 weeks” as I exhaled and possibly whimpered.

There was a moment of stunned silence. Suddenly, I was bombarded with questions such as “How big is your baby?”,  “What does your baby look like?”, and “How do they put in IVs?”

At that moment, I knew I was in a very different world than they were. Even between NICU parents, there are varied experiences. Many are making plans of WHEN they will take their baby home while others are wondering IF their baby will go home.

There are some parents that have one of those super preemies that everyone alludes to when they meet someone with a preemie. On the other hand, there are babies that seem to struggle with everything.  Each NICU baby’s journey is different. I do not see any harm in recognizing that or attempting to find those with similar journeys.

When I use the term micropreemie or discuss the length of Charlie’s NICU stay, it is not out of a competitive spirit.  It is twisted to compete about such things. Any NICU experience is terrible.

Choosing to use micropreemie is an attempt to relate to other parents whom have had similar journeys. Interestingly enough, one of the NICU moms that I found to be most helpful was not a preemie mom.

When someone says,  “A preemie is a preemie” to me, I find it to be dismissive of how hard my baby has fought. It ignores the struggles that we, as a family, have had to face. Overall, what is being conveyed to me is how they do not understand my world at all.

yougurt

Another beautiful picture taken by Monica DeMariano


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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