Thursday, March 31, 2016

Therapy Tip: Holding Bottles

Welcome to Therapy Tip Thursday!

For you newcomers, this is the day that I give a tip based upon my experience as a pediatric speech-language pathologist and a mom of a child with special needs.

Today's tip is for:
Helping A Baby Hold Their Bottle

When my daughter was a baby, I could not get her to hold her bottle. Due to her Down syndrome, she had low muscle tone and short fingers. She had a heart condition as well which meant her stamina was poor.

Today's tip was born out of desperation. I wanted Jaycee to hold her bottle. I tried cupping her hands on it, while giving her support with my hands over hers with no results. The only success I had was with a very small two ounce bottle from the hospital which was skinny enough for her to hold in her small hand. A two ounce bottle was not practical all the time though.

Jaycee was on a bottle for a prolonged period. Her oral-motor abilities were poor for drinking and eating. She was on a bottle until around age 2 when I was finally able to transition her to a sippy cup and straw. Her health and calorie intake always dictated how fast we could move her through feeding milestones.

When a child isn't doing a developmentally appropriate skill, I think it's always important to think of supports to help them rather than view the child as just obstinate. I wondered how I could help Jaycee hold her bottle to be more independent. Then an idea came to me. I made it, and it worked the very first time I tried it! Using a can koozie (a.k.a. can hugger), I made a support for Jaycee's bottle.

To replicate this, you will need scissors, a can koozie, masking tape, and the baby's bottle. The idea behind this is create little holes in the sides of the can koozie for the baby's fingers to slip through in order to support baby's hands in holding the bottle.

Here's how to make it:
First, place the bottle inside the koozie. If your bottle is loose in the koozie, use the masking tape to tighten up the koozie by wrapping the tape around the bottom and the top of the koozie. The can koozie needs to be tight enough to stay on the bottle. Next, make 4 little slits on each side of the koozie for the baby's fingers to slip in the koozie and on to the bottle. You might want to use a marker to mark the spot where the baby's fingers naturally hit the koozie with the bottle inside. The slits should not be too tight on the baby's fingers. They should not cause pressure on the fingers or hurt the baby. Of course, this support should still be used with an adult present.

Now, you should be ready to give it a try. Place the baby's prepared bottle inside the can koozie. Gently place the baby's fingers in each finger slit. Hopefully, this should give your baby support to hold their bottle. If it doesn't work the first time, don't give up. Give it another try!

This worked the very first time I tried it with Jaycee. I felt that I witnessed a miracle with this can koozie. I hope it helps your baby too!

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

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Tuesday, March 29, 2016

What if...?

There are moments that make you wonder. Maybe you noticed something that just didn't seem right with your child. Maybe you noticed a significant difference in the development between two of your children. Or maybe you found something odd on your child's body. There could be a multitude of scenarios that have now caused you to have a thousand questions like:

What child isn't going to outgrow this problem?
What if...something serious is wrong with my child?
What if...the doctor missed something?
What if...the teacher's concerns are valid?
What if...this isn't just a phase?

There are questions about our children that can haunt us as parents. The questions are sometimes too scary to even ask out loud. These questions keep us up at night, make us second-guess ourselves, and leave us feeling stressed and anxious.

The answers to these questions are needed but finding them may be difficult. Perhaps, you tried before to get some answers but you got absolutely no where. Perhaps, you were made to feel like an overly worried parent when you brought them up to a therapist or doctor. Perhaps, you want answers but your spouse doesn't. Perhaps, you are scared to find the answers and keep waiting for things to change on their own.

The answers to these "What if?" questions could possibly be life-changing and have long-term consequences. Facing the reality of the answers could result in an emotional and spiritual battle that you may not be ready to face. Whether you are ready or not, it may be time to face them!

If you are a parent right now in a "What if..?" battle, I want to encourage you. I know it's hard to wonder about your child's life, health, and future. I know it is a draining process finding the answers to silence those nagging questions. But, you can do this! This season in life is extremely difficult as you might have to change some of your expectations or dreams for your child. But, you will adjust and find a way.

Don't let a question produce fear in your heart. You are stronger than a question and the answer to that question. Why? Because you're a mom!
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Monday, March 28, 2016

E-book Announcement

I am excited to announce that I am part of an e-book recently released called When a Diagnosis Changes Everything: A Collection of Stories from Mothers of Special Needs Children. There are 11 moms who share the stories of their children being diagnosed with a variety of developmental and medical issues. I share the story of Jaycee receiving multiple diagnoses with the focus on her diagnosis of Wolff-Parkinson White syndrome.

This book was the idea of Kera Washburn, who edited, compiled, and contributed to the book. Kera writes over at The Special Reds.

I read the book in its entirety and feel it's a great read for moms recently experiencing a diagnosis for their child as well as those who are years into their child's journey. It's also a great read for professionals or extended family members who would benefit from personal insights.

You can purchase the book here.
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Thursday, March 24, 2016

Therapy Tip: Throwing At Mealtime

Welcome to Therapy Tip Thursday!

This is the day that I give a tip or idea based upon my experiences as a parent of a child with special needs and a pediatric speech-language pathologist.

Today, the tip is for children who throw their plates.

What? Your child has never done this? You are blessed! Come back next Thursday!

This was a problem in my house for what seemed like an eternity. When Jaycee was a toddler, she often threw her plate and cup at meals. She thought it was hilarious. She didn't understand when we got on to her. We were so frustrated as we spent our meals holding Jaycee's plate down to keep her from throwing it. In resturants, we were reluctant to give her a plate because we knew that she would toss it to the floor when we were unprepared.  

The solution I came up with was:  picture cue placemat.

This placemat was a miracle for Jaycee. The placemat, with an actual picture of her plate, provided her with the visual cue to keep her plate on the table. At the time, Jaycee was good at matching pictures, so this concept helped make this work.

Steps to make:
1. Gather up your child's plate and cup, if needed.
2. Take a digital picture of the plate (and cup) as if it were sitting on your child's highchair or table.
3. Print out this picture in an 8X10 size or sized to fit your child's highchair tray.
4. Laminate the placemat or place it in a plastic sleeve to protect it.
5. Tape the protected placemat to the tray or table where your child sits.

Using the placemat:
-Once the placemat is placed where it needs to go, show the child the real empty plate. Tell the child, "I'm going to fix your plate and give it to you. You need to keep this plate here."
-Show the child how the plate and the placemat plate are the same. You may check their understanding of where it goes.
-Fill the plate up with food and place it on the plate on the picture located on the placemat.
-Give your child verbal cues to keep the plate where it needs to be.
-Only after several successful meals using the exact plate on the placemat would I suggest that you change the real plate to avoid confusion.

I have tried this with other children with varying degrees of success. I hope this makes your mealtimes more enjoyable.

Therapy Thursday is for informational purposes and not intended to be therapeutic advice.
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Monday, March 21, 2016

My 3-21 Message

Sometimes, it seems like I have had the same conversations with people over and over again regarding my daughter with Down syndrome. Because of my experiences with her, I have learned how much people don’t understand about Down syndrome and people with intellectual disabilities. Sometimes, this leads to me feeling extremely frustrated because I am her mom, friend, and advocate. But, I need to remember one important thing: I once was one of these people who didn’t understand.

Before Jaycee, I thought, like many other people, that only older mothers gave birth to babies with Down syndrome. I was 25 years old when I had Jaycee. I looked at the doctor and asked, “How did this happen?” The doctor explained to me that the chances of Down syndrome occurring increases with maternal age, but it can happen to any pregnant woman for no reason at all. Since having Jaycee, I have repeated this explanation to people who wonder what went wrong for me to give birth to a child with Down syndrome.

Before Jaycee, I felt pity for children with Down syndrome. I saw their trouble learning to speak and their difficulty picking up other developmental skills as sad. I felt sorry for them for wearing diapers past the typical age. I called these children “poor thing” when I saw them struggling with a simple task. Then I had Jaycee. I have witnessed her struggles, but I also seen many, many successes. She isn’t someone to pity. She is someone to be proud of. She works extremely hard to learn new things and doesn’t give up. Jaycee’s shortcomings are not the center of our lives, and I have learned to encourage growth in her stronger areas. I feel happiness when Jaycee makes a joke on her communication device or through sign language. Jaycee doesn’t seem to feel sad about her life, so why should I?

Before having Jaycee, I thought all life was valuable. This is the one thing that hasn’t changed, but I have received more clarity. Jaycee’s life is not important because of what she can do. Her life is important because of who she is. She is a sweet girl, a daughter, a sister, and cousin bringing love to our family. She is a fighter, surviving two open heart surgeries, two heart ablations, and multiple hospital admissions. She loves music, dancing, pizza, being with friends, and the color green. She has thoughts, opinions, and emotions. She is a human being whose life is no more valuable than mine just because I can speak, graduate college, and hold a job.

As we celebrate World Down syndrome day on March 21st, I am reminded of the work advocates have to keep doing for people with Down syndrome. Sometimes, it feels overwhelming to address preconceived notions and to keep educating the public. I am reminded that people’s minds and attitudes can change, because I know mine did. If only every person in the world could meet Jaycee, then they too would understand.

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Thursday, March 17, 2016

Therapy Tip: 5 Easter Ideas

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 therapy. If you have Easter eggs, baskets, and bunnies around your home, you will love today's ideas.

Easter Therapy Targets

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.

Come back next Thursday for another therapy idea!

Therapy Thursday is for educational purposes only and not intended for therapeutic advice.
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Tuesday, March 15, 2016

Does God know what I can handle?

If you are a Christian going through a trial, I would almost guarantee that you have heard a common saying in the church world:

God will never give you more than you can handle.

This exact phrase is not found in the Bible. Most people refer to 1 Corinthians 10:13 where Paul writes: No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it.

(I know some of you are scratching your head because you are sure that quote about God never giving us more than what we can handle came directly from the Bible. Look for yourself.)

This is a common saying that people use in an attempt to make us feel better. For me, it does the exact opposite.

Whenever someone gave me a sympathetic look and told me God would never give me more than I could handle, it made me shut down. It did not make me feel better.

In situation after situation, I heard this phrase. When Jaycee was having a second heart surgery or a second heart ablation, I was supposed to find comfort in knowing that God knew we could all handle this. Seeing Jaycee on a ventilator for three weeks I imagine was also something God thought I could handle too. No matter what the bad circumstances, these were often the words that people chose to say to comfort me.

I grew to hate these words. I got angry at the people who said them to me. It was as if I was experiencing something painful because I was strong enough to endure it. Huh? Other times, I took this phrase to mean that my trial wasn't anything to sit around and be upset about because God knew I could handle it. Still other times, I felt this phrase was saying God allowed bad things to happen to my life because I could endure it. That's a real motivation to stop praying!

One day, I was surrounded by a few people who were ministering to me. You see watching your child have surgeries, be in respiratory distress, and have numerous tests done some of which you help hold her down for is very mentally draining. I couldn't handle it. In fact, the panic, worry, stress, and fear had such a grip on me that I was not functioning well mentally. Obviously, I couldn't handle all of these trials with my daughter's health. I needed help to get over these things I witnessed, so I set aside time for prayer with some people I trusted. Through the ministering, this phrase came up about God not giving me more than I could handle.

For the first time, I spoke up and said, "I hate when people tell me that!"

My father, who was one of the people praying for me, gave me a different perspective on this quote. He said, "If you are feeling stressed, overwhelmed, and in a situation you can't handle, then it is not God giving it to you."

It was then that this popular quote from Christians became something I could agree with. When I'm feeling stressed about Jaycee's health, I know that God will be there to help me through my battles. He isn't the cause of the trial. He is the answer while I am walking through the trial.

So does God know what I can handle? Yes, but that doesn't mean he is the source of all the ugliness in life.

Will God give me the hope and peace to get me through the times that are difficult? Absolutely!

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Thursday, March 10, 2016

Therapy Tip: Using Junk Mail

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: Turning Junk Mail into Language Activities

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 use these unwanted materials into language targets.

Prep Work:
1. Collect all your unwanted junk mail.
2. Find pictures that correspond to your language target. Because I work with toddlers, I do all the searching for pictures and cutting of pictures myself prior to seeing the child.
3. Choose what you are going to put the pictures on. I generally use construction paper, old scrapbook paper, paper plates, or poster board.
4. 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.

Come back next Thursday for another idea!

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

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Wednesday, March 9, 2016

Guest Post: Make-A-Wish

Last year, Jaycee had a wish granted from Make-A-Wish due to her complex medical history. Last year, my niece, who has had two kidney transplants, also had a wish granted.

I had the honor of being a guest blogger for Make-A-Wish recently. Read my guest post about Jaycee and Gabby here.
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Tuesday, March 8, 2016

Moms in My Two Parenting Worlds

I live in two different worlds of parenting. The moms in these worlds are similar in some ways, but extremely different in others.

When my first child, Jaycee, was born, I entered the minority world of parenting a child with special and medical needs. With I was around other moms with children without special needs, I felt so different. I was a mom of a baby with Down syndrome and heart and lung issues. Before Jaycee turned 3 years old, my parenting revolved around doctors, therapy appointments, heart surgeries, minor surgeries, figuring out how to get Jaycee to take her daily medications, and isolating my child from germs. The world I was in was my "normal" even though it was quite different.

When I found myself in public situations around a small or large groups of moms, I was lost. My mothering woes weren't even on their radar. While they were conversing about the difficulty of nursing, I was worrying about Jaycee's congestive heart failure worsening. They were discussing potty training methods when Jaycee was just learning to walk. From the beginning, I just felt out of place.

There wasn't much about my mothering experience with Jaycee that was typical especially those first few years. Consequently, I did not feel comfortable in social situations with most other moms. When they discussed the horrors of an ear infection, I kept my mouth shut. When they bragged about their toddler counting, naming colors, or saying some long sentence, what was I to say? My Jaycee struggled in many areas. The normal mommy bragging and discussion of problems made me feel cut off from other mothers. I felt very out of place in social situations and felt more at ease speaking with other mothers who had children with special or medical needs.

When Elijah was born, I was actually outside my comfort zone when I had a typically developing, healthy child. I felt odd in this new world. I had no emergencies with him or a medical crisis to consume my thoughts. I had no surgeries to plan for or doctor's appointments to fill up our calendar. It felt strange.

When other mothers talked about their child, I now felt I could join in on some of the conversations with other new moms. I could now relate to a child with common issues. But, I had a different perspective than most because of Jaycee. I knew a "big" problem from a "little" problem, and I had trouble at times with moms who discussed things that they described as "the worst." Our "worsts" were still far away from each other.

With my children being 10 and 6 years old now, I have met many, many moms in both of these parenting worlds. There are many moms I can't connect with at all, but I have found a few gems.

I am grateful for the moms from each of the worlds who understand me. I am thankful for the mom who doesn't make fun of me for saying I can't have Jaycee out after 8 pm, because she understands Jaycee needs to be on her bi-pap before she falls asleep. I'm thankful for the mom who doesn't make a comment about my parenting when I ask for their help when Jaycee has thrown herself down and is refusing to move. I'm thankful for the mom who takes the time to say, "No, you're not," when I say that I'm fine. I'm thankful for the mom who asks questions (Why does Jaycee have a hard time talking?) instead of offering assumptions (She could probably talk if she wanted to.). When one of my mommy friends checks with me after an appointment with Jaycee, I'm grateful that they cared.

Navigating these two parenting worlds can be difficult. So to those moms who make it a little easier for me: Thank you!

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Thursday, March 3, 2016

Therapy Trick: Color Sort Game

It's therapy Thursday!

Wahoo! This is the day that I give a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with special needs.

Today's trick is: Color Sorting Game

Prep Work:
1. First, buy or recycle two plastic containers. I prefer clear containers since there is no color on the container to cause any confusion.
2. Collect some little chips or tokens of two different colors. These yellow and red ones are from a Connect Four game that my children no longer play.
3. Tape on the container a colored piece of construction paper that corresponds to the color of the chips you are using. These will serve as markers for the children that red goes in one tub but yellow goes in another.
4. In the lid of both tubs, make a small slit for the chip to drop through.

Therapy Targets:
1. Matching and sorting colors is the main goal of this activity.

I hold all the chips and dish them out a few at a time to work on skills that the child is working on such as:
2. I ask the child if they want red or yellow to reinforce them saying the color.
3. By asking how many chips they want, this gives the child a chance to name a number. Then we count them out one at a time.

Other uses:
Working on sight words? Write a word on chip to practice reading and drop them in the tub.
You can put nouns on one color and verbs on another to sort those differences.

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

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Tuesday, March 1, 2016

"You should work harder."

"Of course my child can do that, I taught them."

I remember sitting around a table with a few other moms and some of their children. Over dinner, we sat and discussed life and parenting. A few of us marveled as we watched a little two year old with Down syndrome perfectly use a fork and spoon.

It was then that the mom plainly told us that she helped her child learn to do it.

"I work with him on it, and he can do it now. The therapists told me that they can see who works with their child and who doesn't. He can do a lot of things because I teach him."

My wonderment of the child using utensils soon turned to embarrassment and shame. My child sitting near me was shoveling food in with her hands and sometimes with a fork that I put in her mouth. She was three and could not use utensils. Though she didn't call me out specifically, I was left with the impression that I should be working harder with her.

Work harder?

What else could I do? At least one meal a day, I helped Jaycee hold a spoon using the hand-over-hand method. I purchased a variety of spoons looking for something that could help her with the wrist motion that she could not make. I found a deep toddler plate that could help her scoop food out easier and placed a mat under the plate to help stabilize it. She also worked on these skills and more in occupational therapy.

And still, I had to feed her because she couldn't do it herself. Around 3.5-4 years old, she finally learned how to move her wrist and grade her movements just right to feed herself. But on that day in the restaurant, we hadn't had that success yet.

There are times when as a mom you feel shame while trying to do your best for your child with special needs. Even if you work on something really hard, the skills don't come quickly or maybe never at all. It is frustrating. It is sad. And sometimes it can bring people to judgments, even people in your special needs community.

Here's the thing we should all remember, every child is different. This is true of typically developing children and children with disabilities. Not every child can excel in a spelling bee. Not everyone can understand calculus at age 16. Not everyone can hold a spoon at 2.

This is a lesson that I have learned over and over again in raising Jaycee, and I have taught it to families I work with in my speech therapy practice. Parents often voice that they have tried some techniques I suggested with little or no results. They are frustrated. They want their child to talk. They believe the solution is another technique (it could be) or that they/we need to work harder.

But sometimes, there isn't a magical fix. Sorry-don't want to be a downer. Sometimes, the child needs time. They need to keep practicing, developing brain and muscle memory. Their muscles may need to get stronger. They may need maturity. It may not be a question of working hard enough.

So if you are a tired momma out there in a situation I have described, I have some advice for you. Cut yourself some slack. I'm sorry if someone made a comment that made you self-conscious and made you feel you weren't doing enough for your child. No one is in your shoes, so try not to let it bother you. Take a moment to enjoy your child today. Celebrate the successes you have had, and try not to view those skills that haven't been mastered as personal failures.

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