Tuesday, February 28, 2017

Superstitions I Developed as a Parent -Special Needs Edition

Superstitions range in topics and subject matter. From the number 13 to pennies, there are some common beliefs about things that will bring either bad or good luck or will result in a particular behavior or action.

As I listened to a television show joke about the origins of some well-known superstitions, I thought, "I don't believe in that stuff."

Then I got to thinking.  Maybe I do. While I have no problems opening umbrellas inside of buildings or stepping on cracks, I do have a couple of parenting superstitions that I apparently follow. Here's a few of them.

-Don't talk about a healthy streak; you will jinx it!
My sweet Jaycee has struggled with a variety of health conditions including 2 different heart conditions, obstructive sleep apnea, asthma, lung cyst, recurrent pneumonias, and GERD. The most dangerous thing for Jaycee is a simple cold. She has been admitted to the hospital multiple times for a cold that escalated to respiratory distress. Not every cold sends her to the hospital, but these require me to monitor her closely at home. The times of illness are scary, stressful, and unpredictable.

The times that are healthy are wonderful. I do not have to look at monitors or thermometers or consult her doctors. I don't have to worry about my daughter or analyze her breathing. We can go outside. We can plan activities and actually do them.

When the healthy days turn into weeks and months, I have come to believe that it is better to not make note of it. As soon as I declare happiness because of a 6 month healthy streak, it is sure to end. Then, the countdown will have to start all over again.

So a superstition I seemed to have developed is that I try not to talk too much about healthy streaks. Each day without sickness is appreciated and does not go unnoticed even though I do not formally draw attention to it.

-Always bring extra clothes to prevent an accident.
My daughter has been toilet trained for several years. However, she does have an occasional accident that is mostly related to her medical traumas. Sometimes just pulling into the hospital parking garage will result in her getting nervous and having an accident. Clearly the hospital triggers something emotional in her and for good reason!

It seems that every time I take her bag of extra clothes for that just in case moment, we don't need it. If I suspect that a test, blood draw, x-ray, or doctor will give cause to necessitate "the bag," I rarely seem to use it. If I forget the bag or proclaim that we won't need it, then Jaycee is bound to have a problem that I didn't foresee. Then, I am left with a mess to deal with and a bag that is not conveniently near us.

My mantra lately has become, "Let's take the bag with us, so we won't need it." The presence of the bag seems to prevent the need for it, and she's generally accident free when the bag is with us.

Sadly, I have started believing this superstition is true.

-Giving up on a skill sometimes helps it develop.
I am not sure how many times I have become too focused on Jaycee developing a particular skill. I get disappointed or frustrated that despite both of our best efforts, the skill just hasn't been mastered. Then, I give up. I don't stop all my efforts necessarily, but I submit to the fact that the skill is not going to happen any time soon. Then, it does!

When Jaycee was in pre-school, I wanted her to write her name so badly. We practiced tracing the letters in her name, used methods from Hand Writing Without Tears, and reinforced writing during outside chalk play. Fine motor has always been a challenging area for Jaycee, and handwriting proved to be hard. Despite all of our handwriting practice, she could not write any letter in her name after months of practice.

Then, I gave up. I decided Jaycee may never learn to write her name, and I may have to be okay with that. Shortly after, Jaycee "signed in" on our name page on a home school day due to illness when she was 5 years old, and I could actually make out some letters in her name. I did a double take. I couldn't believe it, but there it was. There were approximations of every letter in her name. I could tell that she tried. Hope was restored!

It appears sometimes giving up on a skill becomes the catalyst for the skill to come. Maybe time passes quicker when mastering a skill isn't the main focus. Whatever the reason, I seem to believe that skills happen when I quit trying so hard with Jaycee.

These are some of my superstitions I have developed as a mother of a child with special and medical needs. Do you have any?

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Thursday, February 23, 2017

Therapy Tip: Glue, Pictures, and Language!

Welcome to Therapy Thursday! This is the day that I give a therapy idea based upon my experience as a speech-language pathologist and a mother of a child with special needs.

Today's tip is: Glue, Pictures, and Language

If you are like me, you frequently get store mailers, magazines, and catalogs in the mail. Most of them I don't even look at or want. It is easy to turn these materials full of good pictures into language targets.

What You Need:
1. Collect pictures. I use store circulars, catalogs, magazines, and pictures from on-line sources if I want something specific. Because I work with toddlers, I do all the searching and cutting out of pictures prior to seeing the child.
2. Choose what you are going to put the pictures on. I generally use construction paper, old scrapbook paper, paper plates, or poster board.
3. You'll need glue or tape to secure the pictures onto the paper.

Therapy Targets:
1. Actions: Choose pictures of people doing various things (reading, swimming). As the child chooses an action picture, have them say what the person in the picture is doing. I generally listen to make sure that they say -ing endings on the actions (swimming).

2. Food vocabulary: There are always plenty of grocery store ads to find pictures of foods to discuss. For my toddlers, I generally choose common foods they might be exposed to and have them glue them on a paper plate. For older children, you can break it down into vegetables or fruits.

3. Sound targets: If you have a child working on a specific sound for articulation, these pictures can be used too. This takes a bit more digging and searching through pictures for certain sounds. For example, if a child is working on /b/, then I would find pictures like boat, bus, book, or bug. The child would practice these words while gluing them on.

4. Phrases: Staple a few sheets of paper together to create a book. I pick a phrase to write on every page such as "I like ________." The child then glues a picture on the line provided. I generally have a handful of pictures for the child to select from. I like creating these phrase books because the parents then have a good tool to use at home later.

5. Pronouns: Look for pictures of people and now you can target pronouns like he/she. Sometimes, instead of making this into a collage, I turn this into a book as well so the child can use the pronoun in a sentence for practice later.

6. General Vocabulary: This is the one I target most often in my work with toddlers. I pick pictures of basic words like ball, eat, drink, etc. These are glued on construction paper as we talk about each picture.

The best part about creating these things with the child is that you can look at it again later to reinforce the targets. In other words, it becomes a tool to show the child again to discuss the words that were targeted at first.

Come back next Thursday for another idea!

This information is for educational purposes and not intended as therapeutic advice.

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Tuesday, February 21, 2017

If I Were in Charge of Concerts...

A year or two ago, Jaycee and I were invited to a Christian concert. I bravely accepted the invitation, but I had reservations.

This was Jaycee's first real concert in a place that she had never been to. That was two reasons to be concerned that Jaycee may have a problem with the event. I get nervous taking Jaycee anywhere new for the first time but especially if it involves darkness, loudness, and flashing lights.

Fortunately, Jaycee did well. In fact, she loved it! She danced, sang, and signed the night away even if she didn't know the songs. That positive experience has led us to try other concerts too. We are grateful, she has had a good response.
Still, it got me thinking. If mothers of children with special needs ran concerts, things would be different. They would be "safe" for our children. Here's how it would go:

1.   There would be ample warning before the show to signal when it would start. There would be a five minute warning and a three minute warning given. At 1 minute to go, a countdown would appear on a large screen showing the concert is about to begin. (And obviously, it would start on time too!)

2.   When the time warnings are given, there would also be an announcement prior to the show to prepare the child for what is coming. It may be something like this, “The concert will begin soon. The lights will be turned off. It will be dark. The music will be loud, but it will be fun." 

3.   The seat would not be the type that flip up when you stand up. The chair would be safe so that the child could stand up and sit down without having to struggle with a seat that has folded up automatically.

4.   There would be no strobe lights. Am I the only one who worries about seizures triggering when they see strobe lights?    Just me?

5.   There would be empty seats in the back for any child who needs to be positioned farther away from the action or who get too overwhelmed.

6.   The music would start out at a reasonable loudness and would gradually get louder through the first song or two- allowing the kids to adjust to the increase in decibels in an easier manner.

The kids meeting Christian artist Jordan Feliz after Elijah's first concert

      If I were in charge of concerts, I wouldn't have to worry about a potential problem with my child. I could anticipate a night full of dancing and fun instead of trying to prepare for possible issues. Of course, not everyone would enjoy this concert, but I know my kid would. Wouldn't it be nice too if every child could meet a member of the band after the concert as a reward for surviving the experience?

And, yes, these are the things I think about in my spare time. 

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Thursday, February 16, 2017

Therapy Tip: Do You Wanna Build a Snowman?

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

Do You Wanna Build a Snowman?

Winter here in the Midwest generally means snow. Although, this year the snow has been a rarity. Still, I like to use holidays and seasons to target different vocabulary words and mix up activities in my therapy sessions. 

Today, I'll show you how I used an Olaf craft to work on several different language skills for toddlers.

First, you'll need to download the pattern for Olaf. Click here for the link to Olaf. Not a Frozen fan? There are plenty of other snowmen patterns that you can find on-line.

Next, I like to do all the cutting prior to the sessions. Scissors and toddlers are a scary combination for me, so I like to have the cutting done beforehand. This way so we can just focus on the craft and language targets.

After you gather the glue sticks and construction paper to use as a base for all the parts, you are ready to begin.

There are a few different language skills that can be addressed as you put the snowman together. These include:

-Body Parts: Eyes, nose, mouth, feet, and arms can all be targeted in this activity. Generally, I use the Olaf as a tool to talk about our own eyes, nose, mouth, etc. Once the craft is made, parents can continue to review these parts with their child for the next few days.

-Following Directions: Depending on where the child is functioning, you can give 1 or 2 step directions as you put this together. "Get the glue and choose a part." "Put glue on the back, and then flip it over."

-Task Completion: Ever have a child who just won't finish an activity or loses interest after a minute? I love crafts like this because there is a beginning and an end that we want to get to. If the child is losing interest, I try to assist to make it go a little faster. Make sure you praise the child for completing it.

-Action Words: As you work with the child, you can model actions words as they are performed. I generally say "rub" as the child rubs the glue stick on the paper or "squeeze" if you are using liquid glue. After gluing, I model "pat" as we pat the parts onto the construction paper.

-Saying Own Name: Sometimes, it is difficult to get the child to say their own name, which is a skill that is tested on some language tests at age 2. I have used crafts as a way to work on this skill. When the craft is completed, I write out the child's name on the paper saying each letter as I write it. Then I say the child's name. Next, I cue them with, "What's your name?" Sometimes, I will give the child the pencil and let them imitate me trying to write out their name. Over time, this has been a successful strategy for me in sessions.

Enjoy building your snow man as you build your child's language!

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

Congenital Heart Defect Awareness: Jaycee's Story

I remember vividly walking into the NICU to visit my daughter the day after she was born. I was surprised to see there was a flurry of activity around my baby. Several doctors surrounded her tiny bed focused on a screen connected to something I could not see. A nurse showed me to a chair away from the action where I sat wondering what in the world was going on with Jaycee now.

Earlier in the day, several doctors told my husband and I that our baby had Down syndrome. Now, there appeared to be something else concerning. Soon, a female doctor broke from the pack and approached me. The young, blond doctor jumped right into telling me that my daughter had an Atrioventricular heart defect. Essentially, she had a hole in the center of her heart. Half of babies with Down syndrome have a heart condition, but not every heart defect requires surgical intervention.

Within a few days of her birth, she was in congestive heart failure and dealing with pulmonary hypertension. After spending 10 days in the NICU, my husband and I took Jaycee home.

Bringing home a newborn in heart failure meant our lives were a little different. Giving the medications Digoxin, Lasix, and Potassium became part of our daily routine. Getting these medicines down a newborn with an easy gag response and reflux proved difficult. Then there were the feedings, which were exhausting for both of us. Her suck was not strong at all. She tired easily and slept nearly all the time. Jaycee was overall so weak and tired that she literally could not cry. Instead she had a weak little noise that we determined was her version of a cry. At home, we had to find a balance between showing off our newborn while limiting her exposure to germs.

When Jaycee was 3 months old, she had reached 9 pounds which meant she was big enough for her open heart surgery. This was a bittersweet moment for my husband and I. We were ready for Jaycee's heart to be fixed so she could have a better life. But, we were scared of all of the rare but possible side effects from surgery. Handing your tiny baby over to a team of doctors knowing her body would be forever marked from the day was the moment we dreaded since we had gotten her heart diagnosis.

Despite our fears, Jaycee's surgery went absolutely perfect. We were amazed at how a little body can recover from a major surgery. The capabilities of doctors were astounding for us as hospital newbies. The idea that our daughter's chance at life was only due to the ability of these men and women committed to saving the lives of every child was not lost on us.

Jaycee in the hospital after her heart surgery

Today, Jaycee's heart is no longer our biggest concern, but it took awhile to get to that place. She did need another heart surgery at age 2 to fix some of the leaks in her heart left from the first surgery. Jaycee also had two heart ablations for Wolff-Parkinson White syndrome, which caused a tachycardia at age 5. Now, Jaycee has yearly cardiology appointments to monitor her leaks and slightly elevated pulmonary pressures, but the doctors are not anticipating any more surgeries.

Today, being Congenital Heart Defect Awareness Day, my husband and I would like to share our daughter's story of survival. When a heart diagnosis is made, there are many unknowns. We were worried about our daughter’s future and life. We are grateful those days are behind us. Our Jaycee is now a vibrant 11 year old with energy and an ability to scream and cry. For that, we are thankful!

Jaycee at home on oxygen after surgery

Personal note: Jaycee's heart surgeries were performed by Dr. Charles Huddleston. Her cardiologist, Dr. Mark Johnson, has been instrumental in her care as well. All of her heart care has been received at Children's Hospital in St. Louis. We are grateful for this hospital and all those involved.

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Thursday, February 9, 2017

Therapy Tip: Mitten Match Up Game

Welcome to Therapy Thursday!

If you are new, let me explain. 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:

Mitten Match Up Game

Winter brings about opportunities to work on language tasks in a different way.  

If you are like me, you probably have several sets of gloves and mittens stashed around your house. All of those different gloves gave me the idea for this game a few years ago.

First, you are going to have to come up with several different pairs of mittens or gloves. The number of gloves you use will depend on your child's abilities. You will need to have matches though and not a single lonely mitten with no mate.

What you do next will depend on your child's abilities?

Toddler Edition
You can simply un-mate all the gloves and throw them in a pile. You can talk about the gloves and dig through to find the mate. As you go through them, you can talk about their colors, size (too big or too small), and whose hands they may fit (daddy, a baby). You can reinforce words like "on" and "off" as you try them on. The colors and patterns may be discussed as you look at the gloves and search for their mate.

Pre-school Edition/Lower Elementary
For older children or groups of children, you can mix up all the gloves into a large bag. You can practice taking turns as one person at a time picks a glove from the bag. The child gets to keep the glove they have drawn. You can ask them wh- questions after they have gotten their glove. Some questions may be: What color is the glove? Who could wear this glove? When would you need a glove like this? Why can't your daddy wear this glove?
As you draw gloves, you can make matches as a group or turn it into a game with a winner.

Put those gloves and mittens to good language use this week!

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

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Tuesday, February 7, 2017

Getting Pizza, Winning at Life

Success comes in all forms and ways. Last week, success came to our family at a pizza place.

One evening, I gave myself the night off cooking and decided to order a pizza. Jaycee had just finished her medications when I was about to leave to pick up our dinner.

While helping Jaycee off of her airway clearance machine, I asked her, "Do you want to go get the pizza with me?"

She smiled and signed "pizza." That was a yes.

We loaded into the van and made the short drive. Along the way, I gave her my usual reminders, "We are going to get pizza. We are going to eat it at home with your daddy and bubby. We are just picking up the pizza. We are NOT eating at the restaurant. We are eating it at home."

I said this at least twice during the drive and again right before we exited the van.

We walked into the pizza place. Jaycee stood right next to me as we gave our name and paid for our order. Pizza in hand, we then walked out the door and made our way back to the van.

And then I took a second and thanked God for progress.

You see, a few years ago, this would have never happened.

Back then, Jaycee would have walked into the restaurant and veered off to the table that she considers "hers." She would have sat down. Despite me telling her that we were leaving, she would have persisted to sit. I would have paid for the pizza and returned to Jaycee who would still be at the table. I would have showed her the pizzas and reminded her we were eating at home. She would have gotten upset. She might have refused to get up. I may have had to physically lift her from the seat and help her towards the door while juggling the pizza. We would have made a scene. She would be mad and confused. I would be frustrated and stressed. Even though I tried to warn her to prevent this from happening, her limited speech and intellectual disability made it hard for her to understand.

But that was then.....

Thank God for progress! Thank God that Jaycee is understanding and maturing. Thank God I can get a pizza without stress now.

That's a win for us!

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Thursday, February 2, 2017

Therapy Tip: Valentine's Day Language Activities

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

Valentine's Day Language Activities

Here in America, we will be celebrating Valentine's Day on February 14. As you have noticed in some of my previous therapy posts, I like to use seasons and holidays to change up some things that I do in therapy sessions. Valentine's Day is no different. Even though I work with toddlers, there are still elements of Valentine's Day that I can use in sessions to target language skills.

Here are some language skills you can easily work on with simple items found around the home:

-Big/Little:  Make hearts of different sizes using construction paper. You can then compare two hearts and decide which ones are big and which are little. I like to have two different containers to place the sorted hearts into to make it more fun for the toddlers.

-Following directions: Using cut out hearts, stickers, crayons, etc., make a card with your child. Throughout the craft, give your child some simple directions to follow. "Pick up a pink heart. Open the glue. Flip the heart over. Choose a crayon." Going from beginning to end will work on task completion as well.

-Colors: Cut out 2 hearts for each color of construction paper you have. Shuffle the hearts up. Help your child sort through them to find matching colors. For an identification task, spread all the colored hearts out. Tell your child to pick out a certain colored heart such as, "Find pink." Finally, you can work on color naming by having your child tell you all the colors of the hearts.

-Body parts: If your child is working on body parts, you can have them put a heart on the part as you name it. "Put the heart on your foot/belly/head."

-Spatial Concepts: Using cut out hearts along with poster board or construction paper, you can work on spatial concepts such as top, bottom, left, right, and middle. Hand the child a heart and tell them where to glue it using those words. If those concepts are too hard, try using a heart with an object like a small container. With this, you can work on the concepts top, under, in front, behind, next to, and inside. "Put the heart next to the box."

Have fun working on language tasks during this fun holiday!

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

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Wednesday, February 1, 2017

My Marriage Message

Once a month, I contribute a post to the blog Comfort in the Midst of Chaos, which is a resource of Snappin' Ministries. 

This month, I talk about balancing your marital relationship when a family member has chronic illness. Read it here on Comfort in the Midst of Chaos.

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