Tuesday, April 25, 2017

A Day for Wishes

There are things about raising a child with medical conditions that have made life different for our family. There have been scary moments in the hospital with my daughter, Jaycee, as I watched machines give her breath during a respiratory illness. There have been tearful departures as Jaycee left my arms to go off to an operating room with doctors. There have been an innumerable amount of prescriptions filled and specialty appointments scheduled. There have been times when I have hugged my scared child as I tried to convince her to enter a hospital for an ordinary appointment because she is frightened that she will be admitted.

The absolute worst part has been wondering if my child with Down syndrome, repaired AV canal heart defect, ablated Wolff-Parkinson White syndrome, asthma, lung cyst, obstructive sleep apnea, and GERD will live to be an adult. There have been a few close calls, but we are grateful that Jaycee is still here.

For some of the hard and scary days that Jaycee has had, we have also had a few amazing, one-of-a-kind experiences throughout her 11 years of life. One of those happy moments was made possible through the Make-A-Wish foundation. Make-A-Wish grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

In 2015, Jaycee was granted a wish through Make-A-Wish Illinois. (If you want to read how this process started and our trip, click here!) Through the generosity of many foundations and companies, Jaycee was able to meet that amazing purple dinosaur, Barney, at Universal Studios. She was ecstatic to see meet her favorite character as well as visit many Orlando theme parks with her family and stay at the Give Kids the World Village.


Jaycee's granted wish remains the most wonderful week in all of our lives. It offered unique experiences and helped us forget about the difficult moments from the past. We didn't know how much joy it would bring Jaycee and the rest of us nor did we realize the lasting impression it would leave on us. Two years later, we still look at pictures from that trip, and Jaycee communicates about her favorite experiences.



World Wish Day is celebrated on April 29th to mark the anniversary of the wish that began the Make-A-Wish foundation. Since the first wish in 1980, more than 350,000 children around the world have had their greatest wishes fulfilled by Make-A-Wish. Make-A-Wish is the world’s largest wish-granting organization, serving courageous children in nearly 50 countries on 5 continents around the globe.

When I think about all the people who have come together over the years to donate time, money, resources, and gifts to fulfill the wishes of children like my daughter, I am overwhelmed with the kindness and goodwill of others. There really is good in the world; you can find it with Make-A-Wish.

Visit wish.org to refer a child, make a donation, or learn more about the foundation.

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Thursday, April 20, 2017

Therapy Tip: I'm Worried About My Child's Stuttering

Welcome to therapy Thursday! This is the day that I share something based upon my experience as a mother of a child with special needs and a pediatric speech-language pathologist. Today's tip is:

I'm Worried about My Child's Stuttering


Once in awhile, I will get a phone call from a worried mother who has a young child that has started stuttering. I understand why the mother would be so worried. Hearing your child struggle through words or repeat certain words or sounds can be difficult. If a child is stuttering in the toddler and pre-school age range, it does not automatically mean that the child will be a life-long stutterer. When should a parent worry about stuttering? Today, I will try to help you sort it out.

First off. You need to know about developmental stuttering:
Developmental stuttering is different than stuttering. Developmental stuttering begins early in life and will resolve on its own. Some children will begin developmental stuttering when they are having a huge growth in language or struggling with the grammar rules of language. The American Speech-Language Hearing Association has great information on developmental stuttering versus stuttering. They estimate that 75% of preschoolers who begin stuttering will stop on their own.

So, how do you know if it's developmental stuttering or true stuttering? Waiting it out is difficult for concerned parents. Besides just giving it time, there are other things that can give clues into what is happening with the child.


Things to consider when your child starts stuttering:
-Age of the child: Developmental stuttering may occur for children 5 and under. When a child starts stuttering before age 3, there is a greater chance that the child will outgrow it.

-Family History: If there is a close family member who stuttered, then the chances for your child to stutter increases. If that family member did not outgrow the stuttering, the likelihood of your child outgrowing it decreases.

-Time Stuttering: If your child has just started stuttering, then it's important to give it time. If the stuttering has continued past 6 months or has worsened, then this may signal that stuttering may not be outgrown.

-Gender: Gender matters, and it's something to consider when your child is stuttering. Male children are more at risk to continue stuttering. Girls are more likely to outgrow stuttering.

-Type of disfluency: The child who only repeats words or syllables once or twice is considered to be a sign of developmental stuttering.


Concerned? Confused? What next?
A speech-language pathologist can help parents determine if the child seems to have normal disfluencies, has stuttering, or needs intervention. A speech-language pathologist (SLP) may also help parents know how to react to the child's stuttering.

Speech-language pathologists have different backgrounds and experiences. Not every speech-language pathologist reacts to stuttering the same. Some may not want to evaluate a young child who has stuttered less than a year because they want to see if they will outgrow it. Others will evaluate a child who has been stuttering for 3-6 months in order to give the parent feedback and an initial opinion. If you are very concerned and can't get an evaluation from a local SLP, you may want to consult with another speech-language pathologist for assistance.

Personally, I am willing to evaluate any child who has been stuttering more than 3 months who has a concerned parent. During that time, I can look at risk factors and determine the number of disfluencies the child is having on a stuttering assessment. If the plan is to evaluate and wait and see, this early evaluation will give me something to compare to later. In other words, I can see if the stuttering is getting more frequent or less frequent in subsequent evaluations.

If your young child has started stuttering, you may not need to call for help from a speech-language pathologist immediately. But, there are some things you can do to help your child and ease your concerns. I highly suggest visiting the Stuttering Foundation website, which has tips for parents too.


Click here to read more from the Stuttering Foundation.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, April 18, 2017

The Two Versions of a Hospital Stay

April 5th started out like any ordinary day.

Jaycee woke up once again with a junky cough that we had been treating with frequent breathing treatments. She had finished one course of steroids and antibiotics about a week prior for this same cough. I had checked Jaycee on her monitor that morning which showed her heart rate and oxygen saturations numbers where they had been running. I got the kids off to school and went to work for a few hours.

Before the school day would end, things would change drastically with Jaycee's breathing. Jaycee spent the next three nights in the hospital. It's hard to recount everything that transpired over that time. The hospital is able to condense the illness into just a few paragraphs in her thick medical chart.

Here's the hospital's version of that stay from her discharge report:


Here's the full story of what happened:
Jaycee's mother was driving to school to watch her son in a class program. Jaycee's teacher called with concerns about her breathing. Jaycee seemed tired and her oxygen saturation numbers (taken by Jaycee's portable monitor) was lower than the previous days. Jaycee's mother arrived at the school a few minutes later to check on her. Jaycee was given her inhaler again but her oxygen saturation numbers were still in the safe zone. Jaycee then vomited but otherwise seemed in no immediate danger.

School staff worked to clean up Jaycee while her mother attended her son's short program. About 20 minutes later, Jaycee's mother arrived back in her classroom to take her home. Jaycee's arms were splotchy and her lips were discolored. The monitor now showed Jaycee was having difficulty breathing and a third breathing treatment was completed at school. Jaycee then became incontinent.

Jaycee was taken to the emergency room by her teacher and her mother. Arrangements were made for Jaycee's brother before they left school. Initially, Jaycee's numbers looked better at the hospital. After some time, her heart rate and respiratory rate increased while her oxygen saturations started to decrease. Jaycee was placed on oxygen. An IV was placed, blood was drawn for labs, and a chest x-ray was taken. Jaycee continued to be incontinent, throwing up, and started to run a fever.

Jaycee's mother and teacher were informed that Jaycee was septic and would be transferred to a Children's hospital. Jaycee's mother was upset because Jaycee had been septic in 2013, which required a 4 week hospital stay and intubation to recover. IV antibiotics and steroids were started, fluid boluses were given as well as breathing treatments. Jaycee's father was contacted by phone of her change in status so that he could come straight to the hospital. Jaycee's parents immediately contacted people who would start praying for Jaycee.

Almost 2 hours later, the ambulance arrived to transport Jaycee. It had been delayed due to a heavy rainstorm. Jaycee's mother rode in the ambulance while her father drove the family's vehicle to the hospital.

Jaycee arrived at the pulmonary wing of the hospital around 9 pm. Her vital signs were much better but she still needed oxygen and frequent treatments. The doctors explained why they felt she was not septic and believed her symptoms were probably due to acute respiratory failure. However, if she did have sepsis, then her symptoms would return 24 hours after her antibiotics were first given. Jaycee's parents were hopeful but would feel more relieved after the 24 hour mark that came and went without a change in status.


Jaycee received breathing treatments and vest airway clearance round-the-clock during the admission. Jaycee had many desaturations the first night. She needed oxygen day and night initially but was able to be weaned off 24 hours prior to discharge. Jaycee did test positive for a cold virus but her chest x-ray was clear. Jaycee's parents stayed at the hospital and were involved in her care. Jaycee was discharged on April 8th on a long steroid wean and round-the-clock treatments.

***

The hospital's version remarks only on the major medical issues and interventions. My version acknowledges the impact on Jaycee and the people around her.

A hospital stay affects a family in many ways. My son suddenly found himself in his grandma's care. My husband and I felt the chaos of an unexpected admission and fear of what would happen to Jaycee. Jaycee was scared too and exhausted. Things didn't go back to normal immediately once we were all home.

A few days after leaving the hospital, Jaycee had to be coaxed out of our van for the follow up appointment with a local doctor. Even after she left the van, she was scared and reluctant to walk inside the clinic. I had to reassure her that nothing bad would happen today and we would go home right after the doctor saw her.

And so, there are two versions to every story. An unexpected health illness does more than just threatens a person's body. It disrupts lives. It causes emotional issues. It can separate families temporarily.

A hospital stay is much more than a few sentences in a patient's chart. It is part of a person's life story.
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Thursday, April 13, 2017

Guest Post: 5 Life Lessons I Learned During My Daughter's Therapy Sessions

This week my daughter is recovering from a hospital admission, so some wonderful bloggers are guest posting. Today's guest post is by Ali C. from the blog Crazy Cakes and Eskimo Kisses. I could relate to this piece so much when I first read it, and I hope you enjoy it too! ~Evana



My daughter began physical therapy when she was only four months old.  At the time, her hypotonia made it impossible for her to even lift her head, and her gross motor skills were extremely delayed.  I spent my days watching the therapist try to teach her how to roll over, and in the evenings, I did my best to imitate what I saw the therapist do. In whatever spare time I had left, I prayed that therapy would be the key to building up her strength and unlocking her potential.

And the days turned to months, and the months turned to years.  Rolling over turned into crawling, and crawling turned into walking.

I have no doubt that the early intervention my daughter received played an integral part in where she is today -- an age appropriate classroom, running, jumping, and dancing. But it wasn't until recently that I realized her therapy sessions taught me some valuable life lessons as well.

1. Measure life in inchstones; forget the milestones.  Technology makes it all too easy to quickly search developmental skills that your child should be reaching.  Social media makes it even worse. Often times, I was saturated in a sea of milestones -- reminders of what my child should be doing but was not.  While I was sincerely happy to see the accomplishments of my friends' children, I was also often left trying to shrug off feelings of envy and defeat.

Therapy taught me the beauty of an inchstone -- a small but powerful accomplishment. Sometimes in life, we become so focused on the mile, that we forget all the sweet inches that led up to it. Count what truly matters; ignore the rest.

2. It is OK to be afraid, but don't let your fears consume you.  Some days, it feels as if there is so much to fear -- medical procedures, surgeries and an endless slew of doctors around every corner. For the first two years of my daughter's life, I spent my nights worrying that she may never walk. I cried about the huge obstacles stacked against her. I cringed each time we were sent to see a new medical specialist.  And then, the other day, my daughter asked to take gymnastics.  I felt that old familiar fear immediately strike. What if she couldn't keep up?  What if she got injured?  I looked to her therapist for insight.  Her advice?  Don't let your fears stop your daughter from trying something new.

She was right. It is true that there are risks everywhere in life, but they are often accompanied by great rewards. Be bold. Don't let fears stop you from living.

3. Determination is key. Before my daughter started physical therapy, I gave up easily -- if something was too hard, or too time consuming, or if I was too tired. I gave up on diets. I gave up on projects. I was all too happy to be a self-proclaimed "quitter." Observing my daughter learn to walk uphill taught me the importance of a determined spirit.  I watched one day as her therapist helped her walk on the uneven ground sprawled out in front of them. My daughter's legs wobbled, the surface below her was soft under her feet, and more than once, she fell forward onto the unkind ground. But, she never gave up.  Fall after fall, she stood up more determined than the time before to master the hill.  Eventually, she did. 

Often times in life, we stand with unsteady legs on uneven ground. How many times we fall is not what makes us or breaks us.  How many times we pick ourselves up and start again is what defines us in the end. Falling is inevitable; picking yourself back up is a choice. Determination makes all the difference.

4. While determination is important, there is nothing wrong with taking a break.  There were moments during therapy sessions when my daughter would become tired or frustrated. I would watch as her therapist responded in various ways: She would give her a break.  She would redirect her.  She would remind her that if she finished the task at hand, they would do an activity of her choosing. And it worked. Every time. As an adult, I too experienced a daily helping of exhaustion and annoyance, but I rarely gave myself a break to recoup, relax and recover.   

When life throws difficult tasks or extreme stressors your way, do not hesitate to take a break. Read a book, go for a walk, listen to music. Allow yourself to recharge.  You are worth it. Frustration will not allow you to accomplish much, but a rested you with a fresh outlook is undefeatable.

5.  Hope is powerful.  With each fall, my daughter's therapist reminded me that we were a step closer to walking. In times of darkness and defeat, she recalled the many moments of light and triumph we experienced. When I focused on the obstacles and worries of today, she refocused me on the promises of tomorrow.

Therapy taught me this truth: In our lives, we will experience defeat and sadness.  There will be days when we are unsure of everything. There will be moments when giving up seems to be the easiest option.  We will compare and cry. We will feel extreme fear and bouts of envy.  But, at the end of each day, there will always be hope, and that is more than enough.


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Tuesday, April 11, 2017

Guest Post: A Hexagon, A Fat Cat, and A Rubber Chicken

My sweet little girl is home recovering from a recent hospital admission. To help me out, I have arranged some great guest posts by some writers I adore. First up is Tricia from Two Upside Down Turtles. Tricia is not only a blogger friend but a friend in my real life who I see at church. She has twin girls with Sensory-Processing Disorder and delays. I loved this story when I read it on her blog and hope you love it too! ~Evana


I allowed the words they spoke to keep me up at night.  They said the girls aren’t progressing. They’re not doing as well as they were several months ago.  It was one of those times when I wished I could put my fingers in my ears, hum a tune, and drown out what they were telling me.  I know what they said is true and fear began to grip my heart.  But then I began to truly look at our girls and I noticed that they are progressing in everyday life.

Hope crawled into my bed with her iPad and asked me to watch her play Monkey Math.  The game showed her 3 different shapes and she was supposed to press the oval.  Every time she pressed the oval it gave her 3 new shapes.  She was pressing ovals like crazy until she accidentally pressed the wrong shape.  She said “Oops…..that was a hexagon.  I need to poke the oval.”  What?  She knows what a hexagon is?  I had no idea she knew that.

We were working on auditory memory cards.   This is the story that I read individually to the girls.
IMG_8688

These were the answers the girls gave me to the questions.
Who has a magic backpack?    
Hope: Zack        Mikayla: Jack (Oh….so close!)

Why is it magic?    
Hope: Because things won’t break     Mikayla:  Holds only things that aren’t heavy

If you look inside it, what will you see?    
Hope:  A rubber chicken    Mikayla:  A cat.  Zoe’s too big for the backpack.  (Zoe is our cat)

We worked on these same cards last year.  The girls could never remember the name of the person mentioned in the story.  Remembering names has always been hard for them.  But Hope got it right and Mikayla’s answer rhymed with the correct answer.  I couldn’t believe it.  That’s progress.

Why questions are the hardest questions for our girls to answer.  I didn’t expect them to answer the “Why is it magic?” question.  But they gave me answers. They weren’t the correct answers but I thought they were good answers.

When Hope blurted out rubber chicken I laughed and she grinned.   When Mikayla said Zoe’s too big for the backpack it showed that she’s developing critical thinking skills.  Our cat is huge and she wouldn’t fit in a backpack.  That’s the truth.

As I was putting the cards back in the case I was thinking about how I answer questions.  If I don’t know the answer I will say “I don’t know.”  It’s safe to respond that way.  I’m certainly not going to blurt out an answer and possibly be wrong.  That would be embarrassing and risky.  But our girls aren’t afraid to risk.  If I ask them a question they’re going to give me an answer.  If it’s the wrong answer they don’t care.  They just go on with life.  If they don’t know the answer then they’re going to make something up.  And let’s be honest.  Isn’t a backpack with a rubber chicken and a cat in it more fun than a sock, a rock, and a clock?  Oh how I need to be more like our girls.  They live life and they don’t worry about what anyone thinks.

Progress doesn’t always show up in a 45 minute therapy session.  But it shows up in the moments that we’re just living life.  It shows up when a little girl recognizes a hexagon.   It shows up when a fat cat can’t fit in a backpack.  Progress is important.  But I’m learning to not worry so much when progress doesn’t show up on a piece of paper.  Worrying takes away the joy of living life.   And sometimes I just need to stop, laugh at a rubber chicken in a backpack, and savor the grins on the faces of little girls who make my world a better place.


Click here to read the original post on Tricia's blog.


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Thursday, April 6, 2017

Therapy Tip: Building Language During Easter

Welcome to Therapy Thursday. This is the day I give an idea for helping your child based upon my experiences as a pediatric speech-language pathologist and a mom of a child with special needs.

I love incorporating holiday activities into my speech-language therapy. If you have Easter eggs, baskets, and bunnies around your home, you will love today's ideas.

Building Language During Easter



Here are 5 different therapy skills that you can address during the Easter season with things that you may have around your house.


1. Colors:  Gather up all those lovely Easter eggs of assorted colors.
-If your child doesn't know colors, then first see if they can match. Hold up a green egg and have them find another one like that.
-Sort through all the eggs with your child. Put blue eggs in a pile and green eggs in another pile.
-Too easy? Move to identification! Put three or four different colored eggs in a basket. Tell the child to get a specific colored egg.
-Still too easy? Ask the child the color of all the eggs as s/he drops them in a basket.

2. Spatial Concepts: Using the eggs, have the child hide the eggs for another family member or just for themselves. Give them directions using spatial concept words. Examples: Put the egg UNDER the couch. Put the egg IN FRONT OF the table. Put an egg NEXT TO the pillow.

3. Following directions: This is similar to the previous idea but is a little more general. Give your child 2 or 3 step directions using the things around you that are Easter related. Examples: Pick up the egg and put it in the basket. Go to the hall, get the basket, and bring it to me. Find the bunny, put it in the basket, and bring it here.

4. Big/Little, Small/Medium/Large: If you have eggs of different sizes, use these as a way to teach size concepts.

5.  Articulation: If your child is working on a specific sound in speech, then incorporating small objects into eggs is a fun activity. For example, if the child is working on the /p/ sound, I will search around to find small objects I can stuff in the eggs. These may be: penny, pig, pony, pet, etc. I keep a variety of small objects to fit inside eggs for situations like this, so I have a collection to choose from. Look in dollar bins or the party treat bag section in stores to find things that may work for this. In a pinch, I have searched through my stickers to find the right word that I want to target. After you stuff 10 or more eggs with the objects or stickers, the child can open the egg and say the word.

Now that you have some ideas, gather up all your eggs and have fun building your child's language.


Therapy Thursday is for educational purposes only and not intended as therapeutic advice.

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Tuesday, April 4, 2017

My Daughter's Independence

Independence is a goal that many parents of children with special needs have. Early on that may encompass little things like walking independently or feeding themselves. Later in life, independence goals may be doing their own laundry, going into a store alone, or living alone.

When Jaycee was 10.5 years old, she really started showing me that her need for independence was increasing. As I walked her into her first day of school in August, Jaycee got upset that I was coming inside with her. She tried to push me out of the school. Really!? I usually try to respect her wishes, but in this case I was carrying a large sack of school supplies that wouldn't fit in her backpack. I had to go inside with her.

She also has recently been telling me "ou-" ("out") while slamming her bedroom door in my face. Sometimes, she wants privacy and sometimes she is mad at me. My feelings may be temporarily hurt, but mainly I am glad to see that brown door swing inches from my face.

I don't mind her not wanting me around. It shows me that she is developing those typical child feelings. She is growing up and asserting independence. That's what I have always wanted for her. It's not always easy though.

Long ago, using scissors by herself was a big moment!

Sometimes, independence takes intentionality. That means I must choose to step back and let Jaycee do things on her own. Through some conversations with Jaycee's school staff, I have been challenged to teach Jaycee simple skills and help her do things on her own. Some of these things have been hard for me because I am scared of what it will lead to. Teaching her to use a microwave didn't take too long, but I worried she may not understand that certain plates or metals can't go in there.

Independence is a process! For months, I have been reminding Jaycee how to shampoo her hair. At first, Jaycee put the shampoo on her forehead. Now, it's actually getting in her hair. However, she still often forgets to wet her hair first before scrubbing the shampoo in her hair. Jaycee keeps trying though, and I'm glad she has an interest in doing this herself.

Independence takes patience! It is very tempting to just jump in and do things for Jaycee because it's easier. When she struggles with her coat or can't open a soda can, it's hard to watch her struggle. It's better to give her directions to try to help her become more independent, but this is hard!

Independence can be messy! For years, Jaycee has put her plate in the dishwasher and picked up after herself. Recently, she has started scraping food off into the trashcan by herself. I watch while grimacing as most of that food lands on the floor.

"She's trying," my husband reminds me. "It's a good thing."

He's right. I need to allow her to make messes and mistakes because that is how she will learn to keep doing things on her own.

I don't know what life will look like for Jaycee in 5 or 10 years. I have some goals in mind for her, but mainly I hope she continues to want to be independent. It's a process for both of us.
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Monday, April 3, 2017

How do IEP meetings make you feel?

Today, I am over on Comfort in the Midst of Chaos with a post on IEP meetings. Have you ever dreaded them? Have they ever been a source of anger or stress for you? Here's my advice on what to do. Read it here:

When You Dread IEP Meetings
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