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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Thursday, March 30, 2017

Therapy Tip: Selecting Books for Toddlers

Welcome once again to Therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's tip is:

Selecting Books for Toddlers with Language Delays



If you have looked through the children's section of the book aisle in stores, you'll see a wide variety of options available. There are board books and regular books. There are cartoon drawings and books with real pictures. There are books on a wide variety of subjects and even some featuring familiar characters from television.

Which one do you choose?

If you have a child with language delays, then certain books may be more helpful. Here are some things I look for when selecting books for toddlers with language delays and why.

1. Books that are repetitious.
Sometimes, books that are repetitive are sort of annoying to read as parents. But, books that repeat most of the same words on every page have benefits for children learning speech and language. The repetition is great because the child can hear the same words over and over again. Some examples of these books are: Five Little Monkeys, Five Little Ladybugs, Brown Bear, Brown Bear What Do You See, and That's Not My Cat.

Repetition is extremely important for children with language delays. But, not only that, repetition word practice is necessary for children diagnosed with childhood apraxia of speech. These repetitive books often offer a way to get the child to say the same words many times, which is often the target in early therapy. Not every book you read to your child needs to be repetitive, but there are benefits to using these!





2. Books with real pictures.
I like to use books with real pictures to provide the child with a concrete visual example of the object. Over the last few years, there have been many books available for toddlers using real pictures. Some have different themes and some are designed for teaching "first words." These books are great for teaching basic vocabulary, and it helps when I can match up something in the child's environment to a picture in the book. I also like to use the faces of children in these books to work on body parts. Not every book HAS to have real pictures, but it is something I consider when choosing a book.




3. Books with touch and feel parts.
There are many books that contain different things to touch and feel on each page. I do love these books for a few reasons. For kids that may not like books, I have had good success getting them interested by having them touch the parts. They may not listen to the words on the page being read, but at least they are interacting with a book. For children with sensory issues, some of these touch and feel books provide them a nice way to stretch themselves to feel things that may be uncomfortable for them. Another reason, I like these books is that it gives an opportunity to target adjectives like soft, rough, hard, sticky, smooth.

4. Books on subjects that are meaningful to the toddler.
When you are working with toddlers that have 100 words or less, then the subject matter of a book is important. It should be meaningful to the toddler. Some books I have purchased contain pictures that are not relevant to the child's life. Take this book below for example.
I purchased this book because it was $1, so the price was right. Plus, it has some flaps on every page, which many children enjoy. I also like that this book isn't busy. Each page in the book has a theme that is presented with simply drawn pictures in rows. (Compare that to the touch and feel book with it's chaotic picture placement above.) Most of the pictures are relevant to the child's life, but some of them are not. How many toddler's first toys are yo-yos, tops, kites, and marbles? Despite some of its odd choices, I still like and use this book. I just focus on the words that are more relevant to the toddlers I am working with like ball, baby doll, and crayons. When I am working with children with delays, I rarely look/talk about EVERY picture on a page anyway, so I can ignore the pictures that I don't feel like the child needs to understand presently.

Still, it's a good idea to look at the book you are about to purchase and decide if the words/vocabulary targeted in it will be a good fit for your child.




The most important thing when searching for a "good" book is that the child will engage with it. If the toddler isn't interested, then it doesn't matter if you found a book with all the right features you are looking for. Hope this helps you find a good book for your child!


Related: Using Books to Build Language


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

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Tuesday, March 28, 2017

My Fight with Germs & Toothpicks

The last few weeks at my house have been... Which adjective to choose?

Germy would be accurate since 3 out of 4 people have had some sort of illness in the house. Exhausting would be another word to strongly describe how I have felt after taking care of my daughter Jaycee during her respiratory illness that has required many extra breathing treatments, vest airway clearance, and other medications. That leads me to stressful, which is how I felt watching numbers on Jaycee's monitor -willing them to stay high enough to prevent the hospital. Chaotic also describes the days and nights while this occurred since everything got disrupted by treatments.

Jaycee doing vest airway clearance after a breathing treatment.

After a long day in the middle of this illness situation last week, I was preparing the evening meal for my family.

As I reached for the colander to drain some delicious noodles, I accidently hit an opened box of toothpicks. Before my eyes, I saw dozens of three inch tiny wooden picks fly through the air. With the colander in hand, I debated on launching it across the room momentarily. Normally, I don't throw things. But in that moment, for a second, it was a thought I had. After all, I was in the kitchen alone. No one would have seen me do it and maybe it would have made me feel better for a split second.

Instead, I took that plastic blue colander and set in gently on the counter. Then I proceeded to pick up toothpicks from the floor, counters, stove, and a few other places they seemed to have managed to settle in.

After I threw the toothpicks away, I felt God say to me, "Good job."

Excuse me?

I was steaming at the mess I made and on the verge of a breakdown because the demands of the day were just about too much. I didn't understand what I had done good.

Then I pictured myself throwing that innocent colander that was in my hand a few minutes before and how I had the self-control to set it down and not give in to anger.

It may seem small, but I had just won a battle.

As a Christian, I feel I am constantly making decisions and moves that bring me closer to God or not. A thought, that was not of God, entered my mind, yet I resisted it. I decided not to throw the colander and go on with life.

There are times when I don't give myself enough credit. I get upset that I allow a sickness to bring feelings of stress in my life. I get frustrated with fears that pop in my mind when I hear Jaycee's loud breathing. I wonder if and when I am going to handle these situations better. Even though I have work to do, I'm not doing everything wrong.

Sometimes, I need to acknowledge that a day was hard and I did the best I could.

And other times, I need to celebrate the fact that I didn't lose my cool when toothpicks go flying.

What about you? I bet you have had a small victory in your life. Take time to celebrate that moment this week.

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Thursday, March 23, 2017

Therapy Tip: When to Start Speech Therapy for Children with Down syndrome?

Welcome to Therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs. My daughter does have Down syndrome, so today's topic is near and dear to my heart. So, let's discuss:

When should speech therapy be started for babies/toddlers with Down syndrome?

With all the research that has been made over the years, it is indisputable that early intervention for babies and toddlers who are at risk for developmental delays helps the child. The question becomes when should certain therapies begin. 

But it really isn't a simple question to answer. Most articles I have read suggested an evaluation by or at 1 year of age. However, it is rare to find an article to state a specific age that all children with Down syndrome need to be evaluated by a speech-language pathologist. I believe this is because we know that the language of a child with Down syndrome will most likely be delayed whenever testing is completed. But, each child has their own family structure, health history, strengths, weaknesses, and motor abilities to take into consideration. That's why this is somewhat of a personalized decision.



First...What would speech therapy look like anyway in babies and toddlers?
If your baby with Down syndrome is under the age of 1 year old, then most likely the treatment will primarily (or only) focus on feeding and oral-motor abilities. There are babies, like my daughter, that struggle to suck, eat from a spoon, accept a variety of textures, or drink from a straw. These types of issues can be addressed with early speech-language intervention. There are some babies that nurse or drink from bottles without any concerns. Still, there may be concerns with the baby's low muscle tone and tongue protrusion. A speech-language pathologist who has taken courses with Talk Tools, for example, will know some of these strategies that can assist with these oral and feeding concerns. 

Speech therapy that begins after age 1 may start to address language delays. This may include building the child's ability to use gestures, introduction of sign language, encouragement of vocalizations or words, helping them understand familiar words, and following directions.

Libby Kumin has written many great books and articles on the development of language and treatment strategies for those with Down syndrome. You can click here for one example.


Deciding when to Begin:
While I believe early intervention is key, I do feel that there are several factors to consider when deciding what is best for a child with Down syndrome. Some of these are:
  • Family priorities: What are the main concerns for the family? In early intervention, we as professionals are told this is the guiding force that helps us make decisions. Even if the child may show big delays in language, we aren't suppose to push for speech therapy if the mom is mainly concerned motor delays. The priorities and concerns of the family is a one thing to consider.
  • Health & Medical Status: For babies with feeding issues, any digestive issues need to be considered. Reflux and constipation, for example, need to be addressed medically and may affect progress in feeding therapy. Cardiac conditions may affect feeding as well and the energy level of the baby or toddler. This may be an important factor if the child is getting multiple therapies in one day.
  • Hearing: Ear infections and related conductive hearing loss are common with Down syndrome. A child's hearing history or concerns is a factor when considering if/when speech therapy should begin. Hearing loss or ear infections would put the child more at risk.  
  • Other delays: Global delays in development are usually found with children with Down syndrome. When deciding on starting speech services, the team and family need to look at all delays present and consider how one may impact another. Fine motor delays may impact the toddler's ability to mimic sign language. Gross motor delays in babies will affect the speech-language pathologist's decision on positioning for feeding, for example. Therefore, speech can rarely be considered in isolation. The baby/toddler's overall development needs to be considered when deciding to begin speech therapy.
  • Age: The child's age is always key. Sometimes there are agency rules, state guidelines, or program rules that state when speech-language therapy should or can begin. Some may consider 12 months too young to benefit from speech therapy that only focuses on language development as motor skills are still developing and attention spans are short. Some programs will not allow evaluations that are for language only to be completed for children under 18 months. Eighteen months is a common age to see speech therapy evaluations take place in any child without Down syndrome, since this is often the age delays become noticeable and walking is established or close to being established. It is important for parents and professionals to know the guidelines and rules that apply to them.


The take away
Every child with Down syndrome is unique. Each baby and toddler with Down syndrome needs to be evaluated while considering all the multiple factors that come in to play in order to determine when services should start. The earlier speech-language therapy starts, the better. However, therapy may be more productive when certain skills and milestones are met. It is my belief that every child with Down syndrome should receive a speech-language evaluation around 18 months of age and earlier if feeding issues (gagging, poor sucking, stuck on pureed foods) are present.



Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, March 21, 2017

The Story of Down syndrome For Us

It’s just an extra 21st chromosome. One piece of genetic information that seemed at one time to define my daughter. Down syndrome was a huge and overwhelming diagnosis back in 2006 when Jaycee was born and diagnosed.

Time has passed, and my attitude has changed since her birth day. Down syndrome is just part of her story and ours. It is not THE story.
Here are 21 moments from the story of my family's life with Jaycee in honor of World Down syndrome Day.

1.      First ultrasound picture…It was a glimpse of my first-born with knowledge that a daughter was in our future.  



2.       Snuggles after delivery…Before we knew about Jaycee’s Down syndrome and AV canal, there were a few hours when my husband and I just marveled at our new baby without worry. We examined every finger and smiled at every movement and sound.



3.       A doctor's announcement…After waiting 4 long hours during Jaycee’s open heart surgery, I was relieved to hear that the surgery went as planned and all was well with our infant.



4.       First wobbly steps…In a physical therapy session, Jaycee took her first little steps. All those hours in therapy sessions and hard work paid off!



5.       Walking for Down syndrome…Our family teamed up to raise money for our local Down syndrome group and participated in an awareness walk. It would be the first of many times Team Jaycee united.



6.       The Best Word Ever…Is there anything sweeter than hearing a squeaky voice say your name? Nope, there isn’t! "Mama" melted my heart.



7.       First school drop off…Taking Jaycee to pre-school as a little three-year-old resulted in tears from one of us. I’ll let you guess who.



8.       Jaycee becoming a big sister…During my pregnancy with my son, I explained to Jaycee that she was going to have a baby brother soon. Right after Elijah was born, Jaycee came into the hospital room to meet him. She signed “baby” as she peered into his bed while the nurse weighed and measured him. She instantly loved him!



9.       Self-feeding...After months of occupational therapy, hand-over-hand spoon feedings, and trials of many spoons, the day Jaycee fed herself with a spoon was cause for celebration. We could eat together as a family at the same time, and she could be more independent.



10.   Second first steps…After a long and serious stay in ICU when she was in first grade, Jaycee came home depending on a wheelchair. She could not climb steps. She could not even sit up unsupported. When her strength came back slowly and she started walking again all the time, it was a gift to watch. 



11.   Jaycee, the competitor…Jaycee loved participating in the softball throw at the track and field games for our state Special Olympics competition. She kept looking at those of us in her cheering section to make sure we were all paying attention.



12.   The 3 big words…”Love you, mama!” After weeks of breaking up this phrase into simple word approximations, Jaycee one day repeated it back. It sounded like “Uh oo, mama,” but it was the beginning of this beautiful exchange we could have.



13.   School dancer…After some bravery on my part, I signed Jaycee up to participate in the yearly school fundraiser cheer leading and dance group with her peers. Jaycee knew the moves and proved she could do amazing things if I didn’t limit her.



14.   Elsa and Anna…Jaycee was fortunate to receive a trip through Make-A-Wish, which meant she got the royal treatment at Orlando theme parks. She absolutely loved meeting the Frozen cast after a show; her joy was precious.



15.   A lifelong relationship…At a family get together, Jaycee marveled at her cousin dressed up as a deer. From then on, Jaycee fell in love with her cousin, who she referred to as “Deer” ever since.  



16.   A pep rally…Jaycee’s school held an energetic pep rally for the athletes participating in Special Olympics. Jaycee ran through the lines formed by smiling cheerleaders. Instead of bursting through the paper banner at the end of the cheerleaders, Jaycee crawled underneath it. It was such a funny moment!



17.   A friend party...When your elementary school daughter wants to have a birthday party with friends, you make it happen.



18.   A Baptism…After weeks of teaching and preparation, Jaycee went through the water baptism at church like any other child. She came up out of the water smiling, just like all of us who were surrounding her.



19.   My daughter on stage…During a pageant for girls with intellectual disabilities, I saw my little girl transform into a princess and enjoy being in the spotlight. Her abilities were celebrated, and she continues to show off her crown to visitors at our home.



20.   Water coaster Enthusiast…Water coasters exist and my daughter loves them. While I scream my head off wishing for the ride to come to the end, my daughter shows no fear and laughs all the way through.



21.   Home plate with Molina…When Jaycee won an opportunity to meet Yadier Molina during a Cardinal’s game through our Down syndrome Association, there were several seats filled with our friends and family cheering for her. Molina autographed her baseball right after she did.


Our life with Jaycee has set us on a path we did not anticipate. Then again, who could predict some of these moments we have had with Jaycee. Some of them have been extraordinary, a few have been challenging, and others have been gratefully mundane.

Time has shown us that there is a full and good life beyond diagnosis day. Happy World Down syndrome Day!
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Thursday, March 16, 2017

Therapy Tip: 6 Ways to Use Stickers

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

6 Ways to Use Stickers in Speech-Language Therapy



If you have read some of my Therapy Thursday tips, then you know that I like to share ideas that involve items that are inexpensive and easily available. With that mind, let's talk stickers today.

I love using stickers in therapy sessions. They are usually pretty motivating for the child, since stickers aren't something that they do everyday and come in all subjects. There's many ways to achieve language goals with stickers with toddler and pre-school children, but I'll give you 6 ways today.


1. Vocabulary/Naming Pictures: This is the easiest way to use stickers and probably the one that I use the most. I like to collect a variety of themed stickers to work on building vocabulary. Animal, food, and vehicle stickers are some of the easiest ones to find. Basically, I just use the stickers to teach the specific words (chicken, sheep, cow). The scrapbook section of stores often has some very unique subject specific stickers (camping, firetrucks, sea life). Sometimes, these are helpful when you are trying to find an activity based on what appeals to your child.

2. Colors: This takes a bit more digging and planning beforehand. Go through your stickers and find ones that are basically one color. Once you have all the stickers you want sorted by colors, you can do a few different activities. You can get construction paper in the same colors as the stickers and have the child place the stickers on the right corresponding paper. You can simply tell them a color to select from several choices. If they find the right color, they can place it on paper. You can also have the child put all yellow stickers on a page, etc. then make the different colored pages into a book for them to keep. Colored stickers have lots of possibilities.

3. Spatial Concepts: For this, you will need a small empty box and stickers. Using an empty Kleenex box, you can give the child directions with the stickers targeting spatial concepts. This may be: Put a sticker on top of the box. Place a sticker on the bottom of the box. You can also target side/front/back.

4. Articulation/Speech Sound Work: Like with the colors, this activity will take some prep work for you. Depending on what sound the child is working on, you'll have to dig through your stickers and find ones that will work. In the stickers pictured above, I would use some of the stickers for /b/ sound practice such as: banana, berry, bird. This is a great way to mix up sound practice, but it does require a lot of preparation. Usually, you need a large amount of stickers to dig through to find 10 or more so the child will have enough to get enough repetitions.

5.  Choice making: For children who are working on making choices with either a point or a word, you can hold up two different stickers and ask them which one they want. If you are trying to get them to say what they want but they need help, you can say each sticker name as a cue.

6. Sentences: If you are working on saying phrases or sentences, you can have the child say a phrase to obtain a sticker. I like using rote phrases for this such as: I want the ____. I like ____.  Using rote phrases allows the child to practice the same sentence structure multiple times while only one word changes. In this case, the name of the sticker would the be word that changes. If I am using the rote phrase, "I like ___," then I might use different animal or food stickers to allow the child to choose the sticker they prefer.


Enjoy sticker shopping to prepare for your activities, and I'll see you back here next week!

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, March 14, 2017

Keeping Your Faith When Life Tries to Take It

I know I can be strong. I also know I can be broken.

Life hasn't been easy since becoming a parent over a decade ago. In fact, it's been very, very challenging. Yet, I still have faith in the goodness of God and consider myself a Christian.

My faith in God was strong when my husband and I were looking forward to the birth of our first child. At that time, I would have described myself as a very carefree, optimistic, and joyful person.

When Jaycee was born, I was 25 years old, and it would be my first big crisis of belief. I was expecting to deliver a healthy baby girl and return back at my job in a school a couple of months later. But that isn't what happened.

Instead, Jaycee was born and sent straight to the NICU for 10 days. She was diagnosed with Down syndrome, AV canal heart defect, pulmonary hypertension, and congestive heart failure before we left the hospital. I came home with a baby who needed intensive care, lots of medications, and an open heart surgery.

Having a child with a life threatening condition made me a mess. At the same time, I was also hopeful. I know it doesn't make sense. In the beginning there was faith inside of me that rose up. I prayed, spoke scriptures, and even fasted over her. I leaned upon some of that optimism that came naturally. At the same time, depression started to creep in. This feeling was new to me, and I didn't recognize it right away. I was overwhelmed and shocked by my baby's diagnoses and sudden turn of events that came in my life. 



Over the course of a few months into this battle for my child's health, I became a depressed Christian. Some people may think that's impossible, but I can tell you that it is possible to love God and believe in Jesus but to be sad from an event in your life that spirals you down further than you ever anticipated. Is it Godly or right? No. But, you can have very big doubts while you try to do life.

Jaycee's first year of life left me with more questions and worries than faith. During that year, she had an open heart surgery followed by 3 months of oxygen use at home. She failed a hearing test prompting talk of tubes. She started wheezing when she was sick and asthma began being discussed. Her eyes started to turn in and cross which meant seeing another specialist who talked about a surgery in her future. Her developmental delays required home therapies every week. It seemed like every time we turned around; we got bad news.

Any hope I had in God when Jaycee was born was gone by the time she was a year old. I was worn out in every way and my relationship with God suffered. It wasn't a conscious decision I made. It was a slow process of allowing negative thoughts and doubts to infiltrate my thinking and crush any faith. I also doubted the effectiveness of my prayers. Therefore, they became shorter and shorter and done less and less often.

There were questions I had that didn't seem to have any answers for. I couldn't find justice in our situation. I cried to God about my daughter's health with seemingly no response and no miracles.

I continued my Christianity by reading scriptures, going to church, and trying to love God through so many immense emotional and mental struggles. I waited for things to get better. I waited for Jaycee's health to improve. I waited for me to see something happen in her life to know that God was still working in our lives or that He cared.

What can I say? I wanted things to be easier for me and the rest of my family as proof God was with us. But, that hasn't been the case. Struggles have continued over the years. The events the played out after Jaycee's first year of life until now are too much and too long to explain in one post. Here's a sampling of some things we have parented Jaycee through: 20 something hospital admissions for illness/emergencies, 3 heart caths, 2 open heart surgeries, daily medications, bi-pap at night for 8 years, respiratory distress at home, helicopter transports, etc.

Here's what I want you to understand. Life hasn't gotten magically better for my daughter. She hasn't become verbal enough to speak in sentences. She hasn't gotten off her medications. There aren't less doctors involved in her care. She hasn't stopped having scary health emergencies although they are becoming less frequent. The respiratory problems haven't been outgrown. She can't get rid of the medical equipment in her room. There wasn't a "miracle" in any of these areas, but we have seen God's hand on her life in times of serious illness and other situations. I realized the proof of God I wanted came in other ways, not just "healthy" times.

Despite all of this, my relationship with God is strong. After struggling for awhile  when Jaycee was younger without exactly knowing how to pull out of the place of shaky faith I found myself, I changed. I transitioned from a struggling Christian to a Christian with a renewed love and heart for God and her life. It wasn't easy. In fact, it was really hard at first. But it became easier. I believed the things I originally felt about God, and prayed with the faith that God did listen and hear. Something changed in my heart.

Have you been struggling? Here's my advice on how to rekindle your faith while your circumstances are challenging.
  • Connect with God. I kept going to church and reading the Bible even when it was hard. Faith for me some weeks was just showing up at church saying, "God, I believe in you even if I don't understand my life right now." Other times, I read a chapter looking for anything that would speak into my situation. I still tried to show a commitment in some way.
  • Continue to pray. Here's where I messed up. I started to believe the thoughts from the enemy which said my prayers were pointless. But, prayer is always the key! I wish I would have recited the Lord's Prayer if nothing else to keep the habit. Whether you believe God is hearing or not, pray through it.  
  • Find a friend who listens. This is hard when you're struggling. You believe no one will understand or no one has gone through what you have. You may know no one in your situation, but I hope you know someone with faith. That's all you need, someone with ears and faith. Maybe you tried to open up to someone and that ended badly. Try someone else. Isolation is not good! Find a friend who will listen and give Godly counsel when you are struggling. Keeping your doubts to yourself with only allow them to get bigger and stronger.
  • Focus on the good things. There has to be SOMETHING good that has happened in life. Maybe you made it through the day without getting emotional. Perhaps someone took time to mail you a card. Maybe you got 8 hours of sleep. Sometimes, you have to be grateful for the little things and celebrate the small stuff. When life is hard, it is nearly impossible to find something positive. Find something everyday to be thankful. If your ratio of complaints far exceeds your thankfulness, then you need fresh eyes for your circumstances.
  • Be patient. I know some days will be tough. You may feel like staying in bed all day or giving up on your responsibilities. Don't beat yourself up if you had a day full of anxiety or tears. Have patience with yourself but don't allow yourself to stay in an unhealthy emotional place. You deserve better than that.

There is hope in life. Even when things don't turn out the way you prayed, God is still God. Without faith, we have nothing, so fight to keep yours if life is trying to steal it away. Blessings!
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Friday, March 10, 2017

Not Excited for Spring Break? Me Neither...

Going to the beach for spring break?  Great for you.  We have another destination in mind....the hospital. Read all about it on my post on the site Comfort in the Midst of Chaos

When Spring Break Plans Aren't Glorious
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Thursday, March 9, 2017

Therapy Tip: Why Puzzles Are Great for Toddlers

It's Thursday! That means it is time for another tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs. Today's tip is:

Why Puzzles Are Great for Toddlers


I love using puzzles in my speech therapy sessions. One reason why a puzzle is such a great therapy tool is that it targets many skills in different areas of development.

Puzzles work on:
-hand-eye coordination
-problem solving skills
-fine-motor abilities as the child uses their fingers to place pieces in
-vocabulary/concepts as the child can learn these through the subject matter of the puzzle
-memory as the child sifts through the pieces and tries to place them correctly
-task completion since there is a beginning and a definite end to the task
-matching or shape recognition

The cognitive, motor, and language benefits are all there when a toddler is completing a puzzle. The key to success is finding a puzzle that is on the toddler's developmental age. To help you discover where this is...

Here are some things I think about when I am choosing puzzles for toddlers.

-Number of pieces:  The number of pieces is pretty self explanatory. The fewer the pieces; the easier the puzzle will be to complete. I typically start with a puzzle that has 10 pieces or less with a toddler. If a child is closer to 12 months old, I usually start at the chunky 3 piece puzzles.

6 Piece Chunky puzzle from Melissa & Doug with no pegs

-Pegs Versus chunky pieces: Some puzzles have chunky pieces so that the toddler can easily grip the piece. Other puzzles like the one below have a tiny piece of plastic or wood in the center which the child can grasp. The pegs can make the puzzle a little more challenging as the child is forced to use a pincer grasp instead of using their whole hand to manipulate the piece. A word of caution with pegs: I have noticed that some children, especially those with autism, can get too distracted by using the peg to twist and spin the pieces instead of completing the puzzle.
9 Piece Peg Puzzle from Melissa & Doug with Pictures to Match Under the Shape

-Picture cues underneath: Some beginning puzzles have pictures underneath the piece that allows the child to match pictures to complete it. The shape puzzle above is an example of one that helps the child see what piece should go in each spot by providing a picture. Those that do not have pictures underneath are more difficult since the child has to do shape recognition to find the right piece rather than simple picture matching.

Simple Scene Puzzle from Melissa & Doug

-A scene puzzle Versus individual pictures: The shape puzzle (2nd picture above) is an example of a puzzle with one theme but individual pictures. These type of puzzles are much easier than scene based ones. The other two puzzles pictured here are examples of scene based puzzles. These are visually more distracting since the child has to look through and decipher where the piece goes in the scene. The bear puzzle pictured above is a more difficult scene picture because for it to be completed, pieces must be placed in a specific order to make the next one fit.


Overall, puzzles for toddlers can have a range of possibilities and options. Sometimes, parents will buy a puzzle for their child and discover that it is too difficult for them. They may not understand why. I hope by explaining the 4 main things I look at when choosing puzzles, you will be able to select a puzzle that is most appropriate for your child or understand why one puzzle might be harder for your child than another.

All puzzles pictured here can be purchased from School Specialty.

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

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Tuesday, March 7, 2017

My Emotional Attachment to Stuffed Animals

I have a problem. It's a strange one.

I have an emotional attached to several of my daughter's stuffed animals.

There. I said it. Now, let me explain.

I was cleaning Jaycee's room recently. I noticed her pile of stuffed animals was seriously getting out of control. The problem was that I couldn't bear to part with any of them for one reason or another.

There's this one.

What's so special about this dog in a pink nightgown? My husband and I "made" this puppy for Jaycee at a store in a mall that allowed you to stuff your own teddy bear. Jaycee was a few days old and in the NICU when we purchased this. We left the hospital to take a much needed break and decided on a whim to build this dog for her. When we picked out a heart to place inside the dog, I remember I wanted to cry. It held such meaning to me because we had just learned Jaycee had a large hole in her heart and was in congestive heart failure. We both said a silent prayer for her heart as we placed it inside. How can I say bye to this dog?


This soft little panda bear is another item Jaycee received as a newborn. A sweet lady of faith named Betty brought this to Jaycee after she got home from the NICU. Betty also had pizza for us which we ate together. Jaycee loved looking at this bear as a baby. This bear has stayed with us all these years. Betty has went on to Heaven, but her gift remains with us. 




And there's this one. Yes, it is a bit on the ugly side, but his body is shaped like the heart. His name is Snerdlihc, which is Children's spelled backwards. Jaycee received this from the hospital when she was 3 months old and having her first open heart surgery. Because it's a reminder of her mended heart, I have not been able to let go of this little guy.


This cute little teddy bear is another one that I just can't part with. Jaycee's grandma Ramona, who passed away a few years ago, bought this for Jaycee during her hospital stay for her first open heart surgery too. I had mixed feelings about this bear at first because it reminded me of the hospital, which I wanted to put behind us. Over the years, there have been so many hospital admissions that this bear became more a tribute to the doctors that have helped Jaycee time and time again.


This little puppy is from one of Jaycee's hospital stays for a respiratory illness. I played Bingo for Jaycee in the hospital to win this green puppy, which is Jaycee's favorite color. I felt so good winning this after having such a crummy day watching Jaycee struggle. And for that reason, this green puppy is still around.



Isn't this praying little lamb sweet? A friend of mine named Brandi came to visit Jaycee while she was in the ICU once. She sat this lamb on Jaycee's bed and explained that her daughter wanted Jaycee to have this lamb. She told how the lamb had been with her daughter when she was in the NICU. Not only that, the lamb had comforted her nephew in the ICU too. This lamb has helped three kids who left the ICU, so I can't let go this special stuffed animal either.


We picked up these two friends during Jaycee's Make-A-Wish trip to Florida. These were gifts to Jaycee while we stayed at Give Kids the World Village. That trip was absolutely amazing!! Mickey represents the Disney portion of our trip while the bunny (Mayor Clayton) reminds me of the village. I have many, many keepsakes from that trip two years ago, and I suspect that these will be around for awhile.



Meet dog and cat. When Jaycee was in the ICU once, she looked really sad. There was absolutely nothing for her to do but lay in bed and watch movies. Since we left for the hospital in a hurry due to her illness, I did not pack anything for her to cuddle. Off I went to the hospital gift shop to buy an animal for her to hug on while in bed. I picked up the cat, since we had cats at home that she loved. Jaycee's grandma Diana came in to visit bringing the dog. I told Jaycee she would have to keep the dog and cat from fighting and pretended to make them fight. Over the next few days, she would have the cat and dog fight each other in her hospital bed. It was super sweet to see her repeat this action. These two fighting animals are still around causing trouble.



I am guessing that I have provided adequate evidence as to why my odd emotional attachment to certain stuffed animals exists. These are just a sampling. Sadly, there are more in our home that have a story or memory tied to them. So, I keep filling drawers, toy boxes, and shelves with these treasures as they represent challenges she has overcome, people who have showed her love, or moments that brought joy. Who knew stuffed animals could do so much?
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