Tuesday, February 27, 2018

Scriptures I Pray for my Child with Down syndrome

If you are a person of faith, prayer is hopefully an important part of your life. When my daughter was born years ago, I wasn't exactly sure how to pray for her, and I wasn't sure what scriptures to use to support my prayers. Over time, I have found a few scriptures, and I discovered how to use them in prayer for Jaycee, especially when she has been sick or struggled with verbal speech. Today, I'm sharing them with you and a sample short prayer. I hope this helps you in your prayers for your loved one with Down syndrome! 

26 Then God said, “Let Us make man in Our image, according to Our likeness; let them have dominion over the fish of the sea, over the birds of the air, and over the cattle, over all[b] the earth and over every creeping thing that creeps on the earth.” 27 So God created man in His own image; in the image of God He created him; male and female He created them. Genesis 1:26-27 NKJV

Father God, I know that Jaycee was created in your image and that your spirit rests inside of her. Help me to see You in her, and help me to bring out the best parts of her that You created. I also know that the things you create are made with purpose. Let me know your purpose for Jaycee so that she can live the life you intended her to live. Help me not to be distracted by the things that she can't do, but let her abilities be at the forefront of my eyes so I don't get sidetracked. Amen! 

In this manner, therefore, pray:
Our Father in heaven,
Hallowed be Your name.

Your kingdom come.
Your will be done
On earth as it is in heaven.

Give us this day our daily bread.

And forgive us our debts,
As we forgive our debtors.

And do not lead us into temptation,
But deliver us from the evil one.
For Yours is the kingdom and the power and the glory forever. Amen.[c
Matthew 6:9-13 NKJV
God, your word in Matthew 6 is powerful! I am thankful that your kingdom is life-giving and life-changing. I pray that your kingdom come in Jaycee's life and your will be done just as it is in heaven. Sickness cannot abide in your kingdom, so let sickness not be part of Jaycee's life. I pray that she'll walk in victory here in earth just as she would in heaven. Let everything she struggles with on earth turn into a victory through you working in her life. Let your will be done in Jaycee's life so that she can show others your kingdom as well. Amen. 

10 Then Moses said to the Lord, “O my Lord, I am not eloquent, neither before nor since You have spoken to Your servant; but I am slow of speech and slow of tongue.”

11 So the Lord said to him, “Who has made man’s mouth? Or who makes the mute, the deaf, the seeing, or the blind? Have not I, the Lord? 12 Now therefore, go, and I will be with your mouth and teach you what you shall say.” Exodus 4:10-11 NKJV
God, I love your response to Moses in the Bible. Moses discounted Your calling because of an imperfection in his life. You saw beyond it though God. You chose to make him a leader despite his speech issue. I thank you God that you encouraged Moses, because I know you can do the same for my daughter. Lord, you know my daughter struggles with verbal speech, but I know you have made her mouth. I know you can use her regardless of her limited speech. Teach Jaycee supernaturally what to say and let her speech improve. Help people to have the ability to see beyond her shortcomings in her speech too so they can see You in her life. Amen. 
I am the door. If anyone enters by Me, he will be saved, and will go in and out and find pasture. 10 The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly. John 10:9-10 NKJV
God, your word is clear. You give life. Your desire is for your children to live an abundant life. I recognize that any health issue with Jaycee that tries to steal her breath, damage her organs, or make her life restricted isn't from you. I recognize that you don't want these for Jaycee, so God I pray that you give restoration life to every part of her body that is not functioning at its best. Touch her lungs and heart, so that they can be strong to give her a full and long life. Amen!
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Thursday, February 22, 2018

Therapy Tip: Making Home Speech Therapy Successful

It's Therapy Thursday! This is the day that I share a tip based upon my experiences as a mother of a child with special needs and a pediatric speech-language pathologist. Today's tip is one I have many thoughts on:

Making Home Speech Therapy Sessions Successful

I have been doing in-home speech therapy sessions for over a decade now. For the past 11 years, I have been primarily working in my state's birth-three program, which mandates that sessions be conducted in the child's natural setting. That means that I conduct the majority of my sessions in the child's home. Daycares or a babysitter's home is my other main setting.

Working in a child's home can be a very positive experience. There's no better way to understand how a child's delays are impacting their everyday life than to watch them in their home environment. Having a parent or caregiver in the session giving input and relating successes and challenges makes home therapy unique and personally tailored. It really is the best way to have family centered therapy because the family and the home is the focus. Home therapy is also great for the family as well. They have access to the therapist who can answer questions or give advice.

That being said, home therapy can provide its challenges to therapists. The therapists are the visitors and have little to no control over some of the things in the home at the time of the visit. As a home visitor, I try to keep in mind that I am a guest in the family's home. I shouldn't come in their house with a list of demands and needs as I am there to support the family where they are at. That being said, there's some things that hinder the child's sessions and some easy things a family can do to make the most of the time. Today, these are my suggestions for making home therapy more successful:

1. Turn off the tv and tablets! 
There are some children who are so excited that I am there that they can completely ignore a television in the room. There are some children that are the exact opposite. These children will watch the tv and ignore me despite my best efforts. Some children will grab their parent's phone or tablet if a television isn't available. It's best to make sure all devices are put out of the child's reach and the television is turned off during sessions.

Even though early speech therapy with toddlers is play based and fun, it is work and learning is happening with the child. If you were doing something that required concentration, you would want minimal distractions for you. The same is true for your child. Sometimes, adults will have a program on for them. This doesn't bother me as long as the child isn't distracted by it and the volume isn't super loud. My preference would be for no televisions though during our session.

2. Watch siblings and make adjustments.
Siblings can be a help to sessions or a hindrance. There are some siblings that really provide a benefit for the session. They can model phrases or words for the child. They can model turn taking in activities or games. The older siblings can usually pick up on what I am trying to accomplish and really provide an excellent model.

On the other hand, there are some siblings who take over or cause more problems. I have been in some sessions in which I felt like I was a babysitter for the parent. I have literally been left alone in the living room with the child I am working with plus younger siblings. Younger siblings (those under 18 months) usually cannot provide modeling that I need from a sibling. Usually, they try to take our toys or materials due to their young age and take time away from the child I am working with. It should be understood that therapy time in the home is not a time for the therapist to be entertaining all of your children without the therapist's permission.

Similarly, if there are multiple siblings that are very talkative, this too can take away from the child's therapy time. I have had some sessions where the siblings fight and talk and talk and talk to me or each other and totally cause the child I am working with to stay silent and overlooked. The therapy is less productive in this scenario as well.

I won't say that siblings should or shouldn't be in sessions. My program encourages sibling involvement, but sometimes it is almost impossible (or time wasting). My advice to you is to watch how your other child(ren) react in sessions. You should be able to see if your child is helping or hurting their sibling's speech therapy sessions. If not, ask your child's therapist.

3. Make sure your child is awake.
This may seem obvious, but your child needs to be awake for sessions. There have been many sessions that I have arrived for as scheduled and on time yet the child is fast asleep. Sometimes, an unplanned nap happens in the afternoon, and this is understandable. There are some morning sessions though that parents wait for me to arrive before waking up their child. The process of waking up the child can take up to 10 minutes of the session. As a therapist, I value the time that I have for each session. Consistently using several minutes every week to awaken a child is not a productive use of the therapist's time. Please, make sure your child is up and ready to go before the therapist gets to your home.

4. Put away the pacifiers. 
If your child is attached to pacifiers, they most likely won't be allowed to keep them in their mouth for speech therapy sessions. Some toddlers will remove the pacifier and be fine for our sessions. Other toddlers will resist the removal of a pacifier and will cause a disruption in therapy for several minutes. If your child falls in the later category, then you will need to make sure the pacifier is removed before the therapist arrives to save some time in therapy. After all, your child will be less likely to speak if the pacifier is plugging up their mouth.

5. Be engaged and participate!
The best thing you can do for your child in home therapy is to be an active participant. Watch the therapist, so you can replicate what she does later. Ask questions, report problems, and give input to your therapist. You know your child the best, so you will have good information to give.

Home therapy with your child should be a positive experience for everyone in the home. You don't necessarily need a special space or room for therapy for it to be successful. But, minimizing distractions and being attentive to your child during sessions can help your toddler get the most of their time in therapy.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 
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Tuesday, February 20, 2018

Looking for the Bright Side

Hey everyone!

Last week, I was thrilled to be on the Key Ministry blog again with a new post. This post was written after Jaycee was out of the hospital for the second time in January, and I was trying to find the positives in the situation. Stay positive is so important to do, but sometimes it takes effort.

If you haven't read it yet, click the link below:

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Thursday, February 15, 2018

Therapy Tip: 3 Great Toys for Toddler Language Development

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

3 Toys I Love for Encouraging a Toddler's Language Development

If you search online or in stores, there are no shortages of toy options for children of any age. Any parent can get overwhelmed by the numerous toys that claim to work on different developmental skills. There are many good toys out there. Today, I'd like to share with you the 3 main toys I use to encourage language development and why.

1. Potato Head
Potato heads are great for many reasons. First, you can target the basic body parts like eyes, nose, and hands. Secondly, you can target the concepts in/out as your child places the parts in the potato head. Next, you can target the concept of 1 and 2 (2 ears, 2 hands, 2 eyes, 1 nose). Finally, you can hoard all the pieces from the child. Have them say a word or phrase to receive a piece to complete it. The multiple pieces gives you a chance to elicit your desired word or phrase multiple times. Beyond language, placing the parts in the body is a great fine motor experience.

2. Simple Puzzles
I love using 6-9 piece puzzles in therapy for language development as well. Puzzles are wonderful for some of the same reasons as the previous toy. First, the puzzle generally has a theme that hopefully has words to grow a vocabulary. Some pictures on puzzles are just not great for teaching vocabulary, so you have to think about this before purchasing a puzzle. There are many good puzzles featuring pictures of food, animals, vehicles, or familiar characters. If you hold all the pieces and give the child one at a time, you can really have them focus on the vocabulary of the pieces. Secondly, you can address following directions and vocabulary identification by holding 2 puzzle pieces in front of the child and tell them to get a certain piece. ("Get the cow.") Next, spatial concepts of in/out can be targeted. Finally, you can count the puzzle pieces to work on simple counting. Besides the language targets, puzzles are great for matching, cognitive skills, and fine motor.

3. Vehicles
Little cars, trucks, trains, and tractors are also wonderful toys for language. If your child is working on saying just 1 word at a time, you can use these toys to model simple words or sounds (whee, go, beep-beep, stop, mine, up, down). If your toddler is working on saying 2-3 word phrases, then the vehicles provide many opportunities to build phrases. Some examples of these include: go truck, stop car, green tractor, fast car, slow down, let's go. Next, you will notice that you can target many adjectives and actions using vehicles, which is really important if your child is working on phrases or sentences. Finally, you can use the vehicles to teach spatial concepts if you add in a table, box, container, or ramp. Using another object like this, you can show the child on top, under, in, on, and off.

As you can see, my top 3 toys for language development for toddlers are pretty common and easy to find. They are also relatively inexpensive, and you may already have them in your home. These toys can be maximized for language development IF you take time to engage WITH your child while they are playing with them. They do not have the same effect if the child is left on their own without an adult modeling words or sounds.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice. 
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Tuesday, February 13, 2018

When a Mended Heart Grows Up

I marveled at my daughter's 10 tiny toes and fingers. I touched her soft skin and chubby cheeks. My heart was racing with love for her with that first glimpse after her birth. Little did I know that her heart was beating differently as well. 

During the pregnancy, I
had no worries about my daughter's heart, but that was back when black and white grainy fetal ultrasounds were all we had. Nothing was caught before Jaycee was born. After birth, her problems were noticed almost immediately by hospital staff. It was a cold day in February nearly 12 years ago when I found out what an AV canal heart defect was and watched my daughter have her first heart echo. 

I look back on those early years with a mixture of feelings. I was ecstatic to be a new parent of a beautiful little girl, but I was very concerned about her health. I had so many fears and worries at that time of Jaycee's life. Before Jaycee, I never really had experiences with the health care system or life-threatening health problems. It's a world of its own that can be overwhelming for anyone entering it for the first time, especially when it's meet under the circumstances of your first child. 

I was learning how to use a breast pump one minute and learning about my daughter's heart condition the next.
I was washing cute tiny outfits in the laundry and cleaning out medicine syringes in the sink.
I was taking Jaycee to the doctor for her normal shots, and I was making plans for her open heart surgery.
After surgery, I was rubbing baby lotion on her arms and legs and securing her nasal cannula to her face with tape.
I was turning on sweet soothing music for Jaycee while silencing alarms on her pulse ox monitor.

The first two years of Jaycee's life was a learning experience. In those two years, Jaycee had two open heart surgeries, a diagnostic heart cath, and spent three months on oxygen at home. I hoped the worst was behind us.

As a mom who loved her child, I wanted to know back then what the future would hold for Jaycee. After seeing my child's chest scarred twice, handing her off for surgeries, and going through all the emotions these situations brought, I wanted assurances for Jaycee's future.

All these years later, I can tell you what 12 years have been like with my child with a congenital heart defect. Since she was 2, Jaycee hasn't needed any more heart surgeries. She did need two heart ablations for a different heart problem, Wolff-Parkinson White syndrome, that triggered when she was 5 years old. For some time now, she has only needed yearly heart echos and cardiology appointments. Her only restriction in life is that she can't ride intense roller coasters. She's certainly done every other ride at amusement parks without a problem.

Jaycee's health has not been perfect, but she has Down syndrome and several lung issues. It's often hard to determine what diagnosis is responsible for what, but for the most part, her heart has not been the issue that I feared it would be so many years ago.

Since February 14th is Congenital Heart Defect awareness day, I wanted to take a moment to reflect on my daughter's journey with CHD. Hearing your child has a heart defect is a serious and scary thing. I am sure there are many parents out there getting a diagnosis and wondering what life will be like. I was once you. Here we are though, 12 years later. My daughter has a good and full life, and I pray that your little one will too!
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Thursday, February 8, 2018

Therapy Tip: Snow Day

It is Thursday, so you know it's time for therapy tip Thursday! This is the day that I share a tip based upon my experience as a speech-language pathologist and a mother of a child with special needs. Today's tip is:

Snow Day Language Fun

Have you had any snow days lately?

Nothing makes my son more joyful than seeing those snowflakes hit the ground. I love seeing the delight in his face. I remember when I was like him. Now as adult, I hate the interruptions snow brings. But, snow does bring a unique opportunity to work on language skills with your child under 5.

When my children were toddlers, I loved to go scoop some snow into a giant Tupperware container and bring it in the house. I didn't have to worry about my two year getting too cold out in the snow, and I didn't have to put layers and layers on that child. Whether you bring the snow inside or you brave the cold outside, here are some language skills you can target with your child under 5.

-Winter clothing: Mittens, gloves, boots, coat, and hat are all good vocabulary words that you can talk about while you are both bundling up.

-Adjectives: When playing with the snow, use adjectives to describe what the child is seeing and feeling. These include: cold, wet, freezing, and white.

-Action words: While playing with the snow, make sure you are saying the action word you are performing so the child can learn them (roll, scoop, pat, dig, throw, stomp, hide).

-Counting: Make several snowballs, and count them out for your child. To practice rote counting to 3, count to three before throwing a snowball. Ask the child how many snowballs they want, see if they give you a number word. Then use snowballs to show them how many that number is.

-Colors: If you are feeling very creative, you can use food coloring in spray bottles to tint the snow. Then you can talk about the colors you both added to the snow.

Always remember too, simply talking to your child during your snow play will work on language naturally. Asking questions, answering questions, giving information, and responding to your child are all natural things that shouldn't be discounted. Now, go enjoy your next snow day!

Therapy Thursday is for educational purposes only and not intended to be therapeutic advice.
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Tuesday, February 6, 2018

The Question that Doesn't Help

I made dozens of trips into my daughter's room the first night we were home from the hospital. Her monitor alarmed, signaling a drop in her oxygen saturations. It screamed, "Beep, beep, beep," as I made my way to her room. The night became a long blur of adjustments in her positioning and giving treatments.

A question crossed my mind. 

As I sat near my daughter's hospital bed, my hands held hers as I said a desperate prayer. The ventilator hummed, beeped, and worked to give my daughter breath. The web of wires and tubes crossed my daughter's body as she lay critically ill. 

There was one question screaming at me yet again. 

Days after a throat surgery, I heard my daughter coughing through the baby monitor. When I checked on her, I discovered that Jaycee was coughing on blood coming from her mouth. My husband and I rushed her to the emergency room.

All the while, a question raced through my mind.

I packed for a family trip. I loaded all the medications, nebulizer machine, bi-pap, and airway clearance machine in the vehicle next to her wheelchair.

The question came at me again.

In the nearly 12 years of parenting my medically complex child, I have had some of the same old thoughts and questions rise again and again. Some of the questions are understandable given the situation I find myself in with my daughter. Some questions inspire me to research, learn, and advocate for her. Other questions do me absolutely no good:
Who lives like this?

This question pops in my head in highly intense times or moments when I feel like there's absolutely no one like me. It's a question that stays usually in my head. In moments of complete frustration, I ask it out loud to no one in particular and without expecting any real answer.

Who lives like this?

I ask this when I feel isolated.

I ask it when I feel my parenting experience is outside the norm.

The problem with the question is that it comes with negativity attached to it. The answer to the question is that no one lives like me. But there is no one who lives quite like anyone though really. The question comes when I'm upset, and it doesn't make me feel better.  

There's some things I'm trying not to do because they don't help me. Since this year began, my daughter has been hospitalized twice. Every day this year so far, she has had required an increase in medications and vest airway clearance. I have had to factor her extra needs into everything I have done this year so far. I became frustrated one day that I couldn't just up and go do something that I really needed to do. In my head, I wondered who lived like me. And a second later, I heard the whisperings of God tell me to stop with this question that helps pull me down into a negative space that I don't need to go, especially when I'm juggling so much.

But, I've noticed something else recently. As I walked into the living room, my kids were cuddled up on the couch together watching a movie. They laughed as they held hands and enjoyed a moment together. Later that day, each of them hugged me and told me they loved me. 
Now I ask that same question. 
Who lives like this?
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Thursday, February 1, 2018

Therapy Tip: Hearts, Love, and Language

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:

Hearts, Love, & Language: Using Valentine's Day for 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 inside 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." Making the card 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.

-Shapes: Obviously, you can target the heart shape in these activities. You can add any other shape you want to compare two shapes (heart, circle). 

-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 instead of poster board. 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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