Tuesday, January 17, 2017

A Song of Love for Jaycee

"Hey Jaycee here's your very own song of love..."

When the song's opening comes through my van's speakers, my daughter gets very happy. She knows this is HER song. As it plays, she gestures, attempts to sing along, and dances to the catchy song that is all about her.

How did she get this song of her very own?

This song came from the Songs of Love Foundation, a group that provides free songs for children and teens facing medical, physical, or emotional challenges. Each song is unique for each child, with no song ever being duplicated.

We received this song on CD over a year ago, but it's still exciting for Jaycee to hear. Through our visit to Give Kids the World via Make-A-Wish, we learned about this foundation and decided this would be perfect for Jaycee.

To receive the song, I filled out a simple form describing Jaycee and her health conditions. It also asked for information that could possibly go in the song. I wondered what song would be created from Jaycee's nickname "Sissy" and her interests in swinging, swimming, Barney the Dinosaur, her cousin Gabby, and hugging.

After a short wait time, we received a CD with Jaycee's song that amazingly made all of her interests work together. It was so sweet! Here's a portion of the lyric sheet:

The foundation website says that they provide the medicine of music, and it's an accurate description. My daughter spends 40 minutes every day sitting through airway clearance and approximately 30 minutes on a nebulizer each day. You can easily double those times if she has any respiratory symptom or cold. She spends each night on a bi-pap machine, which is something she has needed since age 3. Jaycee has a very good and full life, but there are machines and medicines she must have daily to stay healthy. That is what makes organizations like Songs of Love so special because they are dedicated to reaching out to people like my daughter who miss out on many typical things due to accommodations needed for her diagnoses.

Prior to our wish experience, I had never heard of this charity. I'm guessing that many of you haven't heard about it either. They are always seeking kids who qualify to receive this free gift of music as well as donations to keep the songs going out to kids who need them.

For more information on this organization or to make a referral, please visit their website.
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Thursday, January 12, 2017

Therapy Tip: Winter Sensory Bin

Welcome to Therapy Thursday! This is the day 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:

Winter Sensory Bin

Sensory bins are a fun and popular activity for young children. Sensory bins are simply containers filled with an item meant to provide some sort of texture to the child as they dig and feel around while playing. Other items are placed in the bin based upon the fine motor skills that are being targeted or vocabulary that is being addressed.

Working in homes of toddlers, I try to make up small sensory bins several times a year. Traveling from home to home, I pack a shoebox sized container for my sensory bin. This container is just the right size for one small child to play in and is easy for me transport. I generally don't fill the container completely full since some of the toddlers I work with will end up dumping out the contents.

This is an example of a winter sensory bin I do.

The base of the bin is simple cotton balls. These cotton balls provide a soft texture for the toddlers. After they dig around, I will usually rub the cotton balls on the child's hands and face too.

Here are some of the objects I put inside it.
For my winter sensory bin, I chose to focus on the color white, so that dictated what objects I put into the bin. Besides the cotton balls, I have a couple of white cups (plastic and Dixie), a couple of rabbits, a spider ring, white/black tiger, a cow, and an ice cream and egg from a play food set. Sometimes, I include items like white Styrofoam balls, white pipe cleaners, or white measuring cups. Generally, I use things laying around my home so that families can somewhat replicate my bin if they choose.

Using the items from my sensory bin described above, I can easily target many language skills. These include:
-Actions words: Dump, scoop, eat, drink
-Adjectives: White, soft, full, empty
-2 word phrases: White spider, Put in, Dump out, Hop bunny
-Vocabulary: Bunny, spider, ice cream, etc.
To work on these skills, I just play along side of the toddler as we dig through the bin. It's that simple!

The most important thing about any sensory bin is to find something that will meaningfully engage the child you are working with. I hope this gives you an idea for creating your own.

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

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Tuesday, January 10, 2017

When People Say My Daughter's Down Syndrome Needs Healed

A small replication error causing three copies of chromosome 21 is the definition of Down syndrome in it's simplest form. The fact that this happened to my daughter Jaycee was completely random. It was no one's fault.

But, Down syndrome and it's medical definition is not a good enough explanation for many people. Over the years, many well meaning people have offered me the deeper reason why my child has Down syndrome. Some of these include:

-God gives children with special needs to special people.
-God blesses people with children with special needs who can handle it.
-God makes so many people with Down syndrome, and He choose you to receive one.
-God does not want anyone to struggle therefore, she needs prayer for healing.
-A demon, sin, or generational curse brought this upon your child, so you need to repent/pray.

I understand why people have offered me this information over the years. I too have looked for deeper meanings in the big and small things that have happened in my life. I even searched for the deeper meaning when Jaycee was born.

I struggled with how to pray for Jaycee initially as I tried to understand why my daughter was born with a disability.

At first, I felt it was my duty to pray for her to be healed completely or at the very least have Down syndrome with minimal effects. But, I started to not like those prayers. I felt that those prayers were selling my daughter short. I felt my prayers were only focusing on what was wrong with her and how she needed to be "more like everyone else." Did God view her as imperfect as my prayers seemed to suggest?

Here were some questions I had as I muddled through the subject of disability, God, and Christianity:
-Is the presence of disability the absence of God or is it something else?
-Can a person with a disability serve and love God?
-Can God accept a person with a disability? 
-If everyone should be healed, why didn't God heal Moses of his speech impediment instead of appointing Aaron to be his "mouth?" (Genesis 4)  Could I be Jaycee's Aaron?

I want to make it clear that I believe in healing, prayer, and miracles. I believe all people with big and small ailments need prayer and benefit from prayer. However, I do believe people in the church can show a lack of acceptance of those with disabilities when they only interact with people with disabilities to pray for healing. This post isn't necessarily about the topic of healing but how to approach those with disabilities in the church.

Let me tell you a personal story.

Some time back, I decided I was going to start and host a small group in our church. My group was going to be for parents of children with a diagnosis. I wasn't sure if there were even any other families in my church that were like mine besides the one family I was already acquainted with.

One Sunday was declared the small group sign up day. I stood by a table near my sign up sheet hoping and waiting for other parents to come and sign up. After a few minutes, someone approached me that I was only slightly familiar with at church. The person asked me how my daughter was doing. After my response, she went on to say she is still praying and believing for my daughter to be healed of her Down syndrome and encouraged me to keep believing for that too.

I was taken aback. I smiled and probably told her thanks, but inside I was screaming. There I was hoping to meet and support other parents in a similar journey. Instead, I was reminded just how some Christians view my child, as someone who is incomplete without healing.

I stood there another minute or two and then joined my husband who was waiting for me in the van with the children. He was surprised to see me so soon, since I told him I would be at my table for awhile. I had to get out of there. I started crying as I recounted the story to him.

It may not seem like a big deal to you. Perhaps, you think that person did nothing wrong. They didn't really. But their approach was what upset me. The only topic of Jaycee was her Down syndrome and her need of healing. Period. Jaycee is more than her diagnosis. I have to battle this is the real world all the time, and I don't want to have this battle at church too.

The miracle of 2013
After that experience, I prayed about what happened. I asked God how I could respond to people who only want to talk about Jaycee in terms of needing healing.

You see, I don't feel like God sees Jaycee's Down syndrome as such a huge problem that we do. Jaycee has not been healed of Down syndrome, but she has received healing and grace in her life during her many illnesses and hospital admissions. She was literally on the brink of death once in 2013 when she was maxed out on support on the ventilator. I truly believe that God heard our many prayers for Jaycee during that time and is the reason she is still here.

I know that God works through her even if His healing power isn't manifesting the way everyone would expect it.

Because of all of this, I decided that future people who want to pray Jaycee's Down syndrome away will be reminded of this one thing from me:
Jaycee's body isn't perfect, but her spirit is.

I believe Jaycee's spirit is God's main concern since that is what will join Him in heaven. In that regard, she is way ahead of us in living a life that is Godly. I am not opposed to people praying for Jaycee. But, I do hope they want to get to know her, appreciate her for where she's at, and acknowledge the ways God has worked in her life.

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Thursday, January 5, 2017

Therapy Tip: I'm Worried About My Toddler's Language

Welcome to Therapy Thursday! Today is the day 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:

I'm Worried About My Toddler's Language. Now what?

For the past 10 years in my career, I have worked primarily in my state's early intervention program. This means the majority of my work has focused on providing speech-language intervention to children under age 3. Most of these children are two when I evaluate them as part of a team that decides if delays are present and/or warrant therapy. By the time I am coming to the home to talk to the parents and evaluate the child's language, most parents have had concerns for some time.

So when DO you know it's time to get your child evaluated? When do you wait and see if they will start talking on their own?

Today, I hope to help you answer these questions.

Consult Developmental Information
First, there are many, many websites that can give you information on typical speech and language development for babies and toddlers. It is important to know what is typical to decide if your child is behind. Sometimes, parents will see another child their child's age who is saying and doing more. Just because one child has more skills, doesn't mean your child is "behind." That's why the developmental norms are so important.

Here are two websites with some of this information:
ASHA's Speech-Language Development Information

Developmental Information from the Child Development Institute

Information presented in these websites are good reference points for concerned parents. These are just some of the things that a speech-language pathologist will look at when determining whether a child has a language delay or not. Parents are usually surprised by the number of questions or skills I look for even in a young 18 month old child. The number of words the child has is just 1 factor in assessing their overall language development.

If your child is not meeting some of the skills listed on developmental checklists that you have looked at, then consider a full evaluation from a speech-language pathologist.

Medical/Developmental Information to Consider
Maybe you looked at the developmental information, and you are left confused. You can read so many websites that you may be getting mixed opinions about your child. So, let's move on. If you are concerned about your child's language development but aren't sure if you should have an evaluation now or wait, then consider the factors below.

-Does your child already have a diagnosis that would put them at risk for a language delay?
-Does your child have a history of multiple ear infections or fluid in the ears? Has your child received ear tubes or being considered for tubes?
-Is there a family history of educational, speech-language, hearing, or developmental issues? This may included siblings or parents that needed special services.
-Is your child behind in meeting other milestones? Did your child sit up or crawl late, for example?

If you answer yes to any of these and have concerns with your child's language, then consider getting an evaluation.

More Specific Red Flags to Consider
Besides the developmental and medical history, I often look for these red flags when I am first evaluating a toddler. Each of these would be considered a red flag that would constitute a full evaluation from a speech-language pathologist.

-Was your child quiet as a baby with little to no babbling?
-Has your toddler ever had consistent words or skills that he/she no longer does?
-Has your child's eating ever caused you stress due to gagging or texture aversions?
-Does your child seem to ignore you when you call their name almost every time?
-Are gestures absent? (No waving, no pointing)
-Does your child play with toys in an usual manner? (I.E. spinning car wheels only on cars or simply holding small objects instead of playing with them)
-Does your child seem to ignore other people or children?

If you answered "yes" to any question above, then have your child's language evaluated by a professional. This does not mean that your child is definitely having a delay, this just means that I would not recommend a wait and see approach with these children.

Who should "wait and see" what happens?
If the above information did not alert you to anything new, then I am fine with some parents using a wait and see approach. However, give yourself a timeline to make a decision. For example, if no improvements have been made in __ amount of time, then I will call someone or talk to my child's doctor.

I do want to stress that getting your child evaluated is important if you have ANY concerns. It will decrease your stress, give you answers, and allow your child to get proper treatment if appropriate. Even if your child is tested and a delay is found, you may or may not want to start speech therapy right away. But, hopefully the professionals will empower you to make the best choice for your child.

I have evaluated children who follow directions very well, use many different gestures (even making up their own), communicate well non-verbally, seem to understand everything they are told, but just aren't saying many words. Sometimes, these parents choose to give their child time to improve without any intervention. I usually support the parents but give them a time limit (3 months) to see if their child can improve with just some parent training and parent led intervention at home.

The Bottom Line
If you are worried, just make that call for an evaluation, talk to your doctor, or give yourself a time frame to make a decision. An evaluation should give you the information you need to help your child and answer any questions you have. Getting an evaluation will not "label" your child for life. Speech-language pathologists are here to help you and your family!

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

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Tuesday, January 3, 2017

The Good, Bad, and In-Between of Holiday Break

Happy New Year! I hope you had a great time over the holidays.

If you are like me, you make grandiose plans for breaks. "We'll have special family time," I declared with hope prior to break.

"We'll make great memories. We'll laugh. Nothing can stop our fun! Nothing!"

Then poof. A cough. Gasp!

If you have been a long time reader, you know that a cough and a cold is not simple with Jaycee's lung conditions and heart history.

Jaycee with her new doll
Jaycee's cough went to wet and junky sounding within the first 48 hours of break starting. That meant breathing treatments every few hours followed by airway clearance. Alarms from the monitor went off at night. Dirty sheets from unspeakable horrors were waiting for me several mornings. Two trips to the doctor were required, and one call to the pulmonary doctor was made. Christmas gatherings and plans had to be adjusted for the girl who needed to be close to her machines and emergency medicines. Everything during break was planned around her medicine schedule.

Yep, none of that was fun, but I'm thankful she recovered at home.

On the bright side, my husband and I did manage to go on a date since my mother volunteered to watch our children. We had a respectable grown-up dinner, but I did miss coloring while waiting for our food to arrive. We watched a movie and awkwardly sat next to each other. Usually, we sit Jaycee between us in case she gets scared during the movie. We hadn't sat next to each other in a theater in so long, but we had settled into each other's company before the 20 minutes of previews ended. A date night was exactly what we needed after the week we had. We enjoyed what was our 2nd or 3rd date of the year. (We aren't exactly role models for dating in marriage.)

I did love sleeping in past 6 am during break even if I was getting up in the middle of the night because Jaycee was alarming.

It was also great to watch a few movies at night with my husband after the kids went to bed. God bless you Sully and your awesome water landing skills!

Elijah playing his new tiny piano
Jaycee and I were thrilled to watch Beauty and the Beast three times. I helped Elijah with a Minecraft Lego set and received a great deal of information regarding Steve, Ender Dragons, and other things that I still can't comprehend.

So, everything didn't go as planned, but we still made memories. We still had quality family time. We had moments of fun and laughter amidst the illness and stress.

Several years ago, a pastor who is now in Heaven preached that he never had a bad day, but sometimes had bad things come up. Every day God gave him was good no matter what happened. He believed this even when he battled health issues that ultimately ended his life. His philosophy on life still challenges me.

Some not so great things happened over break, but I won't be calling it "bad."

The kids jamming with Jaycee's new tambourine
We are all still here and got to be together. That sounds great, doesn't it?

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Tuesday, December 20, 2016

Blog In Review

The year is almost over. Doesn't time seem to go fast?

The hustle and bustle of the season is picking up, so this will be my last post for 2016. Like many of you, I have several things to do and want to spend time with my family.

I am especially grateful for all of you who have took the time to read, comment, and share my stories. Readers from all over the world have stopped by since this blog began. The top 10 countries that represent my readers include:
United Kingdom

What did you readers enjoy the most on my blog in 2016?
Everything from pacifier help to Down syndrome stories. Three of the most viewed and shared stories were written by guest writers featured during Down syndrome Awareness Month. Not sure what that says about me.... Just kidding. In case you missed the 5 most popular of the year, here they are:

1. Meet Nate: I Can...

2. The Weekend My Daughter Became a Princess

3. Therapy Tip: Getting Rid of Pacifiers

4. Meet My Brother

5. Meet Sophie: I Can...

I have had the pleasure of having some of my writings featured on other sites this year as well. Here's my top 5 favorite pieces that were on other sites.

1. What I Hide Behind "Fine" on The Good Mother Project

2. What People Don't Understand When Your Child Doesn't Speak on The Mighty

3. 6 Things I Fantasize About While Sitting in the Waiting Room on Break the Parenting Mold

4. What It's Like to be a Mother of a Child with a Speech Delay on Scary Mommy

5. Decision 2016 (No, not the Election) on Comfort in the Midst of Chaos

So that's the highlights from 2016.
Hope you come back next year!

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Thursday, December 15, 2016

Therapy Tip: Building Language Functionally During Christmas

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.

I love using different holidays and the d├ęcor that goes with it to build language and change up typical therapy sessions. With Christmas coming up, today's tip is:

Building Early Language Functionally During Christmas

Christmas trees, stockings, Santa, snow, and lights are all signs of the holiday season. These seasonal items give us a chance to practice new words and target concepts in different ways.

But first....Note: If you are a speech-language pathologist or other professional, it's always best to know your audience. If you are working with a family who does not do a particular aspect of Christmas or has other religious preferences, then you need to consider those before jumping in to the activities.

If you are a parent, I think there is a big misconception that language must be built in a structured activity such as book time. But, there are opportunities around us all the time to build language functionally when it does not feel like "work" to yourself or the child.

Here's some ways that you can target different concepts during Christmas:

-Colors: Have a child working on colors? Have the child point to a particular colored light or ornament on the tree. You can simply say things like, "I see a green light," to reinforce colors they are struggling with. If you have some different colored ribbons or bows left, let the child play with them to reinforce colors too. You can have them match up or sort through red bows, blue bows, etc. if you have many bows laying around.

-Spatial concepts: If you have a young child learning spatial concepts like on/off, under, in front/behind, top/bottom, there are several ways you can target this as well. When talking to the child, use spatial concepts to describe where things are. The presents are "under" the tree. The lights are "on" the house. The star is "on top" of the tree. You can ask them questions to check their understanding. For example, "What is on top of the tree? What is in front of the Santa?"

-Vocabulary: Talk about the different holiday items around you to build vocabulary. This can be done in several ways, but there are many new opportunities to work on different words during the holidays. You can simply talk about things around you. "I see Santa." You can check their understanding by asking, "Do you see Santa? Show me." If they need help, show them.
                    I also like to find objects in the room/house that are in multiples like ornaments, stockings, etc. "I see a stocking. Here's one. Can you find another one?" If they can't find one, help them.
                    If your child has a vocabulary of 10 words or under, I like to target noises and sound effects as well as simple words to see if they will imitate anything that I say. For example, I often say "hohoho" for Santa, make clicking noises for a reindeer walking, and "ding-ding" for bells. When a child has under 10 words, getting them to imitate anything is a win!
                   I like going to Dollar stores and purchasing some inexpensive items like small stockings, rubber Santas, a plastic ornament, or light up snowmen to practice vocabulary with objects that are safe for children to play with under adult supervision. These too give opportunity to focus on vocabulary in play.

Look around! Language opportunities are everywhere!

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

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