Category Archives: Physical Therapy

Charlie Loves Gymnastics

Charlie was invited to a gymnastics themed birthday party. “How fun!” I thought when we received the invitation. I wasn’t sure how Charlie was going to participate but I knew she would enjoy it.

The party was Saturday. Charlie was the smallest of the preschoolers that ran through the gym while the instructor set up mats. The other kids seemed bigger, possibly older, and had a more advanced skill set. To top things off, Charlie fell on her face before things even really began.

I assumed I would have to help Charlie participate. I was mostly wrong. After I helped her with hand over hand direction during the warm ups, I stood beside Charlie as she waited in line behind three other kids. In turn, each child ran down a mat, jumped on a trampoline, and performed a somersault on a sloped mat (all with the instructor and her assistant on stand by to help).

Charlie watched the kids before her and was ready for her turn. I said, “Go Charlie!” and held my breath. She ran down the mat, stepped up on the trampoline, jumped in place, moved to the sloped mat, and performed a somersault. Afterwards, she clapped for herself and ran towards me.

“Do you want to do it again?” I asked. ” ‘gain!” She yelled back.

I stood beside her in line, but it was unnecessary. Charlie seemed to understand the concept of the line and waiting her turn. When she was up front, she expertly raised her hand to let the instructor know she was ready. The instructor responded with a raised hand. I whispered, “Go!”

Charlie squealed with excitement the entire sprint down the mat. The instructor helped her on to the trampoline and off again after several jumps. Charlie decided to log roll instead of somersault down the sloped mat. Next, a low balance beam was added to the course. Charlie counted her steps on the beam as she held the instructor’s hand. Like before, she proudly ran back to me and blurted out, ” ‘gain!”

Charlie enthusiastically performed the routines over and over again. Each time she laughed, clapped, and squealed with excitement. She loved this party.

I found out afterwards that Charlie could attend a half hour class for five dollars. Today, we gave the class a shot.

Charlie enjoyed today’s class as much as the party. The instructor and her assistants seemed to understand where Charlie is skill wise and provided assistance as needed.

There was one little girl in her class whose mother worked intently with her on each element. She performed each step expertly and will probably go on to compete in gymnastics. That is most likely not in the books for us.

For me, my goal is simple. I wanted Charlie to have fun. If she learns to follow directions, learns to wait her turn, and grows stronger, that’s all a happy by-product.

I have a new favorite Sunday afternoon activity. It is watching Charlie squeal with delight as she runs towards her next tumble.

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I was unable to take pictures during gymnastics class because I had my hands full. This picture is a leaf she found while we were on a walk.

 

 

 

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Developmental Delays And The Playground

For me, the playground was an intimidating frontier. Charlie had significant developmental delays. I had no idea how to play with her at a park and it hurt to see her peers run circles around her. In this post, I share a few ideas that worked for us.

Park BlanketCharlie’s motor skills were very limited for quite a while. Her hands were fisted longer than they should have been, she couldn’t roll over, and she wasn’t strong enough to hold a toy. During this time, I laid Charlie and her stuffed animal toy on a blanket near the playground. She liked to hear the sounds of other kids and look around. It encouraged her to turn her head which helped with her toriticolis.

As her therapy progressed, she improved and gained head control. Yet, she was unable to sit. Charlie’s dad and I took turns playing on the playground equipment with Charlie on our laps. We took it slow and supported her where she needed it.

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loneswing1When Charlie was able to sit supported, she took on the swings. She liked to lean up against the front of the swing and stabilize herself with her arms. I gently pushed the swing so that it barely moved.

arb1After Charlie’s first birthday, she started to sit independently and was interested in other kids. That stage posed different challenges. Charlie wanted to play with her peers but her physical delays limited her interactions. During this phase, I took a king sized flat sheet to the park along with several toys. Charlie played on the sheet near the playground and other kids often joined her.

Charlie’s skill set continued to improve. Before she could walk and stand, I looked at playground apparatuses and brainstormed ways for her to use it. As she crawled, she bounced over bridges and used the jungle gym to practice standing.  I encouraged her to touch and explore the mulch, grass, dirt, and other textures.

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swings2Now, Charlie is almost two. She is starting to walk and is beginning to climb. In response, I have adapted our play again. The stairs at the playground are perfect for her to practice on. Due to the open design, I am able to assist her with the motions and can catch her as needed. She also enjoys climbing (with my assistance) up the jungle gym. I let her do the work she is able to do. When she is feeling brave, she will try a solo ride down the small slide. Of course, she is still a fan of the swings.

Honestly, the playground was a tough venue for me. A few times I went home fighting back tears of frustration or hurt. To come up with play ideas, I focused on what Charlie could do and thought of ways to utilize or incorporate the skill. There was a lot of trial and error involved. But, it has been worth it. The playground is one more place to encourage skill development and Charlie loves to play outside.


10 Activities I Use To Occupy My Preemie Toddler When The Weather Is Lousy

Today was one of those days. The weather was of the worst kind. The roads were icy enough to prevent us from going anywhere and there wasn’t enough snow to play in. What is a parent to do with an active toddler on days such as today? Unfortunately, this isn’t the first time it has happened. This time, I was ready. Here are a few of the activities I was armed with:

1) Kid’s meal toy bin: Charlie has yet to realize that most kids meal come with a cheap toy. Instead of giving it to her immediately, I keep the toys in a bin in the closet. On days like today, Charlie loves to dig through the bin and explore the “new” toys.

2) Finger painting with food: This is a sensory play idea from her therapist. While seated in her high chair (to contain the mess as much as possible), Charlie is presented with yogurt, ketchup, apple sauce, and whatever food “paint” that is handy. She enjoys spreading the condiments around the tray and will sometimes taste them.

3) Playing with dough: These  recipes are kid safe and simple to make. I usually have the items around to make one of the three recipes.

4) Play with boxes and packaging: We use online ordering often enough that we usually have a box or two waiting to be recycled. If the box is big enough, I show Charlie that she can climb in and out of it or make a tunnel to crawl through. For the smaller boxes, Charlie likes to put small toys in and take them out. The bubble wrap and other packaging that is frequently included with the boxes are added fun accessories.

5) Musical Accompaniment: Charlie has a toddler musical instrument set. But, her favorite is the simplest and cheapest to make. When beans, rice, cereal, or whatever is on hand is added to a closed container it makes a drum and a shaker. I construct a play list of different types of music. Charlie likes to shake the instrument, sing, or dance to the different kinds of music. 

6) Explore Different Textures: I fill a clothes basket with different textured fabrics and items. At first, I let Charlie explore it on her own. Later, I sort through it with her. We discover different textures as I ask, “How does it feel? Is it rough? Is it soft? Is it scratchy?” Often, we end up playing peek a boo with the different fabrics.

7) The Straw Game: This is another idea that came from Charlie’s therapist. In order to work on Charlie’s oral motor skills, I present thicker substances to her with a straw. She likes to suck up apple sauce, jello, yogurt, pudding, and other thicker liquids.

8) New Story: I find a book that Charlie hasn’t read yet or hasn’t read in a while (library books are great for this). I present it to Charlie and let her look through it first (if she is interested). Afterwards, we read it together.

9) Bowling: I use plastic soda bottles out of the recycling bin and put a little rice or beans in the bottom. Charlie likes to knock them over. However, I’m trying to teach her to use a ball to do so.

10) Indoor Bubbles: Depending on the indoor interior, this may or may not be a good idea. I blow bubbles with Charlie. She works on blowing (I still blow the majority of the bubbles), she pops the bubbles in the air, or steps on them if they reach the floor.

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Charlie finger painted today with hummus, yogurt, and strawberry apple sauce.


Charlie’s Music Therapy

Lately, many readers have expressed curiousity about Charlie’s music therapy. In the following post, I try to answer the questions that have been asked.

After lock down last year, Charlie and I ventured to her first baby group. It was an experiment. She had serious sensory issues and her motor skill progress was at a stand still. I was looking for more ways to stimulate her in addition to Early Intervention. To my surprise, the baby group session went well… especially the musical portion.

100_1005_editedInspired by the success, I scoured the internet for a local baby music class. My web search led to a local non profit organization called The Community Music School of The Piedmont. The music school offers music therapy and a Music Together class as well as other programs.

Charlie was almost a year old but had the motor skills of a four month old. I was not sure she could keep up with the rest of the Music Together class. Plus, I was concerned about her low sensory threshold. I sent an email to the school and asked which program would be the best fit for Charlie. The response was an invitation to sit in a Music Together class and to meet the music therapist. After Charlie and I met the music therapist, I immediately knew that music therapy was where she belonged.100_1007_edited

Every Wednesday for the last nine months, Charlie has attended music therapy. She has benefited in several ways.

First, her sensory threshold has improved. The therapist has actively worked with Charlie on improving her tactile defensiveness and auditory tolerance. Charlie likes to feel the vibrations as she plays the drum, while the therapist plays the guitar, or the time a cello was played in her presence. The therapist also uses feathers, scarves, stuffed animals, and a bead bag in the musical play. 100_1030_edited_edited

Additionally, her motor skills have progressed. There have been a few times when something was not registering with Charlie in PT or OT. For whatever reason, she did not understand the skill the EI therapist was trying to teach. The music therapist teaches similar skills using musical instruments. In music therapy, it is like seeing a light bulb go off above Charlie’s head as she understands and performs the skill for the first time.

Finally, Charlie’s speech development has benefited from the music therapy. Before Charlie 100_1037_editedlearned to open her mouth to vocalize sounds, she grunted to fill in a pause while the therapist sang. Now, she tries to fill in a missing word with the few sounds she has mastered.  Charlie started “singing” before she tried to talk.

Whether Charlie progresses to learning an instrument or not will be a choice left up to Charlie. Music therapy is right for us. Charlie enjoys music therapy and gets quite a bit out of it. Sometimes, she says, “Yay!” when I pull the car into the school’s parking lot.

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Swim Class Revisited

As if things weren’t stressful enough, Thursday evening our furnace gave out. We are cramped into a hotel room while the furnace is replaced. The situation is not ideal but it is not bad. We have been making the best of things and that includes enjoying the indoor pool.

1555267_10101530665321299_1165636807_nA year has passed since we have stayed in a hotel with Charlie. She is scared of the elevator and is obsessed with the trashcan. Overall, she’s been well behaved. I can contribute much of that to the indoor pool and Charlie’s swim class.

I have written about Charlie’s mommy and me swim class she started earlier this month. Charlie loves the class. I, on the other hand, have to confront my public pool aversion and bungle out of a swim suit as I prevent Charlie from crawling through the puddles on the locker room floor. Just typing that makes me wince.

This weekend, I realized the many benefits of Charlie’s swim class. I knew that it has helped her progress towards walking, it is helping her get stronger, and has developed better body awareness. But, I did not know that I was learning from the swim class.

We have had Charlie in the pool each day of our stay to burn off excess energy.

Charlie’s dad took her for the first swim. He had no idea what to do with her once he was in the pool. I suggested many of the 46862_10101530665311319_1238993079_nactivities and songs from swim class. Charlie gleamed as they played. She showed how she could splash, kick, and “swim”. I showed her dad how to hold her in the pool. I know it sounds ridiculous. But, without the class, I don’t think we would have known how to get anything out of pool time with Charlie.

So yes, I hate having to lug everything to the pool for class. I am grossed out by public pools and the puddles in the locker room. I am exhausted by the time I haul Charlie up the stairs after class like a sack of potatoes. However, I’m glad that we are taking the mommy and me swim class and am pleased with the results. While it has been obviously beneficial for Charlie, it has its surprising pluses for me.

If anything, Charlie is one more step towards walking.


Therapy Burn Out

The developmental pediatrician has stated that Charlie is the type of baby the Early Intervention system was made for. I have no doubt that her participation in Early Intervention is a key reason as to why she is doing so well. While it works well for Charlie, I question if I am the type of parent Early Intervention had in mind.

Charlie has participated in the program for over a year and I am burned out.

I have not been feeling well since Thanksgiving. Caring for a child when feeling run down and ill is tough. It is about all I can handle. I don’t want the additional burden of having to actively participate in her multitude of therapy sessions. Nor, do I want to be responsible for her on going therapy.

While I really like a couple of her therapists, I don’t want regular visitors. Even my friends don’t visit frequently or a regularly. These regular early intervention visits feel intrusive. It feels like we are under the microscope even though I know we are not. It is like we’ve traded off part of our privacy for therapy services.

If I feel this way because I’m under the weather, it makes me wonder how working parents feel about EI. Are reasons like these why other parents take “vacations” from therapy?

I know it is important that Charlie receive her therapy services. I am not sure if the current is still the way that is right for us.

Questions for special need parents: Have you taken a break from therapy? Did you change things up? What works for you?

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Swim Class

For our newest adventure close to home, Charlie will be attending swim class which starts this week. We were able to find a really good deal on a mommy and me swim class. Pluses to taking the class include: Charlie loves the water and it will help her progress on her therapy goals.

There is only one problem… I am not a fan of public water facilities. It grosses me out. I don’t even like baths because I don’t want to sit in the dirt, oil, and germs I’m washing off of my body.

Since we have the opportunity to do something Charlie loves at an affordable price, I tried to tell myself I’m being silly. I thought that I was letting the germaphobe preemie mom instinct get the better of me. To reassure myself, I consulted with the University of Google. The CDC fact sheet I found was not very comforting. 

Basically, I’m going to have to step way outside my comfort zone for this. That is the thing about raising Charlie. She challenges me to be braver, better, and try things I’m not comfortable with.

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Then And Now

I do not remember exactly when it began. Sometime around Christmas time last year, I noticed some peculiarities in Charlie’s physical development. She held her hands fisted past the point she should have, she rarely moved on her own, she was unable to hold up her head, she was not strong enough to hold a toy such as a small rattle, and she was rigid even when sleeping.

I remember the sinking feeling I had. It was then that I knew she was not going to be one of those super preemies that caught up by two.

I was frustrated that doctors were hesitant to talk about what was happening with her. I was desperate to talk about it because I knew we could help her and minimize the complications if we acted early rather than “wait and see”. I remember the anger I felt that no one from the NICU warned me that there was a possibility of anything other than her catching up by two. I was saddened as our hopes of leaving preemie life behind were dashed.

That was then and this is now.

I’m grateful for the doctors, the therapist, and the home health nurse that listened to my concerns and helped me find answers. I am glad we discussed the tough questions, devised a plan, and followed through with a course of therapy. While Charlie continues to be delayed, this year I have hope that she may “catch up” someday and find comfort in the knowledge we are trying our best to help her. She has already made incredible progress.

I don’t know how it is going to play out for Charlie but I believe that no matter what happens all will be well.

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Charlie got a doll for Christmas.


Almost There: The Power of Early Intervention

Today’s post is a thank you to Charlie’s first physical therapist. During the first few months home, Charlie’s motor issues became evident to me. While I was told by many to “wait and see”, there were a couple of people willing to troubleshoot with me and address the issue. One of those people was Charlie’s first physical therapist.

She patiently worked with Charlie, brainstormed with me, and taught me how to help my baby. I remember how excited we were last January when Charlie learned to hold her head up. Later in February, we were ecstatic that she learned to roll over.

Unfortunately, we moved out of the area towards the end of February and left behind Charlie’s physical therapist. While we were lucky enough to find another great therapist, I miss our old one.

I remember there was a time I questioned if Charlie was going to learn to walk. (While admittedly it was early to think about such things, we had to consider it as we prepared to move to a place with many stairs.) I want her first physical therapist to know, less than a year later, Charlie is almost there. Her assistance was conducive to Charlie’s success.

Days like these past couple of days make the monotony and weariness of  what seems like endless therapy worthwhile.


Progress Update

A couple of weeks ago, Charlie had her annual IFSP review. Normally, I dread these meetings. This past meeting was different. There was some exciting news along with the usual juggling act.

Charlie was assessed as having cognitive and social skills equivalent to her actual age. At her last pediatrician’s appointment, the pediatrician commented to Charlie, “It is just a matter of getting your body to do what you want it to.”

Charlie’s motor and speech (which includes feeding) skills are very slowly progressing. Nevertheless, they are progressing.

Currently, the task Charlie is having the most difficulty with is learning to walk. She repeatedly tries but falls each time (she has busted her face a few times). Instead, she has found ways to compensate. She walks on her knees or uses a baby sized chair like a walker. So far, it is unanimous among her regular health care providers that an orthotic will be helpful.

Tomorrow is a big day. Charlie has an appointment with her developmental pediatrician. My hope for the appointment is that options will be evaluated to help Charlie progress forward and learn to walk.

Until she successfully walks, I will continue to teach her how to pick herself back up.

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Learning To Walk

Yesterday, the early intervention therapist started the conversation about Ankle-Foot Orthotics (AFO) for Charlie. While I was hoping it was something that could be avoided, I knew it was a possibility. Her developmental pediatrician mentioned that Charlie may need orthotics when he first assessed Charlie.

A couple months after Charlie was discharged from the NICU, something was awry with her motor development. The first indication was torticolis that was discovered while she was hospitalized for a feeding issue. Consequently, she was enrolled in PT through early intervention.  Shortly there after, her arms and hands were rigid while there was something unusual with the muscle tone in her legs.  Furthermore, she had missed her expected milestones. After discussing my concerns with her regular pediatrician we agreed a developmental pediatrician’s opinion was needed.

After a thorough evaluation by the developmental clinic, it was noted that Charlie was delayed in gross motor, fine motor, speech, and feeding. Additionally, it was documented that she had sensory issues. She has made amazing progress since the initial evaluation through PT, OT, and speech therapy. The improvement was so great that I hoped orthotics were no longer in the picture.

Unfortunately, it seems that Charlie is stuck once again. She has learned to pull to a stand. However, for some reason she is limited to only standing for a few seconds on her toes. She will “walk” on her knees. Since she has vision problems affecting her depth perception, there was the possibility her new glasses would help. But, there has been no improvement in her ability to stand or creep.

Her therapist has recommended that we look into the possibility of AFOs to aid Charlie. I am not sure how I feel about it. Part of me is worn by the thought of additional appointments, I feel sad for her that she has to learn to tolerate another device, another part is frustrated that I can’t find the solution as to why progress halted, and the last part is hopeful that this will be what she needs to move forward.

With that hope, I made an appointment with Charlie’s developmental pediatrician to discuss AFOs and this recent development. This may be how she learns to walk. At the beginning of her therapy, I wondered if she would even be able to do that.

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Charlie’s dad dries her off after a bath.


Slightly Burnt

Every week Charlie works on PT, OT, speech/feeding therapy, and attends music therapy. She frequently has specialist appointments or sees her regular pediatrician on the days without therapy. In the quest to solve Charlie’s mystery feeding issues, additional appointments and specialists are scheduled. I hit a wall last night. What is a mother to do when that happens?

Desperate for a break, I trimmed the scheduled appointments to a bare minimum the rest of the week (two left after today). This afternoon, Charlie and I went to the park to meet up with my moms group.

It was exactly what Charlie and I needed.

Charlie was delighted to have another opportunity to play with more kids. I was rejuvenated by the conversation from the other moms. Not only do I get ideas, understanding, and solutions from the other moms but I’m able to feel normal and have a sense of belonging. Inclusion is something that I have struggled with since Charlie’s birth. I finally feel like we belong somewhere. That is a really big deal. Especially, on days that I need downtime such as today.

After our trip to the park today, I feel less weary. Charlie has two appointments left this week to address her feeding difficulties. I’m hopeful we will receive some useful information. For morale’s sake, I need a tiny bit of progress or promise so I can resume the rigors of our regular schedule.

What do you other moms do when you burn out?

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Charlie playing in the park today.


The Miracle Workers

Charlie had the anticipated appointment with the developmental clinic today. She was evaluated by a PT, an OT, and a speech therapist. When the evaluations were completed, she met with a developmental pediatrician. I had mixed feelings about the appointment. I was proud of her progress yet fearful that a new problem would be discovered.

In April, Charlie ran the same assessment gauntlet. Charlie was evaluated as having (globally) the developmental skill level of a four to five month old. Her muscle tone was questionable. I left the clinic with that guarded hope that I have previously posted about.

Today, Charlie was amazing.

In her PT and OT assessments in April, she could not sit with support. I was thrilled that at point she learned to roll over. This time she was sitting, grasping, commando crawling, and trying to climb.

At her prior feeding assessment, she choked and dribbled while eating from her bottle. She sucked on the spoon while barely able to handle a few bites of stage one food. During her feeding assessment today, she ate a container of baby food. She used a hand to place and gnaw on a pretzel. While she still has difficulty with solid food, she was willing to try eating.

Most of her skill areas are starting to reach the level of her adjusted age (ten months). However, her speech and feeding are still significantly delayed. Those areas require quite a bit of further work.

At the end of the day, the professionals at the clinic joked with me that I brought back a different baby. Everyone wanted to know what therapies she was involved in and who were her therapists. They are the miracle workers. The improvement Charlie has made is quite remarkable. No one could have predicted that she would have made so much progress.

I know that I was afraid to hope that she would have an appointment like today.

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Charlie fell asleep today during lunch in the clinic’s cafeteria.


Peer Influence

Charlie did not learn several of her newly acquired skills from me, her dad, or her therapists. We tried. Oh, how we tried. We repeatedly used modeling, hand over hand, and anyway we could think of to teach her the skills. Regardless, Charlie did not master them. As it turns out, other kids are much better teachers at things like crawling and self feeding.

Charlie learned how to crawl during the baby story time at the library. It started when a baby broke loose from her mom and crawled across the circle towards Charlie.  The embarrassed mom quickly wrangled the baby and apologized profusely. Immediately after Charlie saw the baby, she assumed the crawling position. She was unable to figure out how to propel herself forward. The sight of the crawling baby was an epiphany for Charlie. She continued to attempt to crawl until she mastered the commando crawl.

A few days ago, a toddler boy was eating pretzels while Charlie and I were at the park. Charlie watched him intently. He (and his mom) asked if he could give one to Charlie. After I gave my approval, the little boy handed a pretzel to Charlie. She played with it. The little boy wanted to know why Charlie was not eating the pretzel. His mom explained, “Because she does not know how to.” While his mom and I gabbed, he tried to teach Charlie how to eat the pretzel. It was very sweet how patient and understanding he was. She gave him her undivided attention but did not eat. At the most, I was able to hold it up to her mouth while she cautiously mouthed it.

Yesterday, Charlie had a not so great feeding therapy session. She smeared the banana on her tray and cried because her hands were sticky.

Afterwards, I went grocery shopping. I walked the aisles in search of things for Charlie to practice self feeding. The pretzels reminded me of the boy at the park. I purchased a bag along with a few other things. Once home, I dumped some pretzels on Charlie’s high chair tray to keep her occupied while I put away groceries. After a minute, there was not any of her usual banging or knocking. Panicked by the silence, I turned to see what Charlie was doing. She was feeding herself the pretzels! She did not stop even when she gagged and retched a little. That little boy did an amazing job teaching her.

When Charlie gets older, peer influence may not be such a wonderful thing. Currently, it may be what she needs in order to help her master otherwise challenging tasks.

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The Difference Early Intervention Makes

Charlie’s first birthday is less than a week away. I wanted to see how far she has progressed and grown during her first year. I looked through the pics and videos that I have posted on Facebook.

Obviously, she has grown quite a bit since the NICU. In addition, Charlie has made amazing progress in a way that may not be obvious to others. Her motor skills have drastically improved.

In a video taken in mid December (she was four months adjusted age), Charlie was unable to use her arms or legs. (I will post the video after writing this.) At that point, Charlie had only begun PT. Clearly, something was not right.

In desperation, I posted on a special needs parents board. I explained my situation and asked the parents what advice they had for me. Early Intervention and seeing a developmental pediatrician were both suggested repeatedly.

I followed the advice. I had to. It is what I needed to do to be OK if she doesn’t catch up. I knew there was a problem. I could not pretend it was not happening. If I ignored it, she would pay the price for the comfort of my own denial.

For six months, she has been in Early Intervention (PT, OT, and Speech/feeding) while being followed by a developmental pediatrician. We still do not know the etiology of her developmental delay. She is still developmentally delayed. However, she is making amazing progress. Yesterday, she commando crawled for the first time.

Early Intervention has made all the difference for Charlie. I am unsure she would have progressed as far with out it.


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