Tuesday, May 30, 2017

Asthma, Social Workers, and an Unhappy Birthday

I'm not sure how special May 28th is to you, but it's important to me. It's the day when I turn a year older.

A couple of days ago, my age went up a year, and I spent time once again reflecting on my life. I couldn't help thinking about my birthday last year. It had a much different feeling to it.

I tell many stories in my writings, but I don't share everything. If something is painful or emotional, I wait months or years before I may decide to share that part of my life. Time has passed since my last birthday, and there is a story I am now willing to tell.

In May 2016, life was a bit chaotic. My family sold our house and moved into our new home. Much of May was spent on final touches, packing, unpacking, and all the other lovely things that go with moving. Add to that, Jaycee started to get a cold. Normally, Jaycee does a breathing treatment and an airway clearance treatment twice a day every day. When she is sick, this increases to every 4-6 hours-sometimes around the clock. For a person with obstructive sleep apnea, asthma, two repaired heart conditions, GERD, and a lung cyst, a cold can attack her lungs seriously. Therefore, I go into a heightened alert when she is sick.

I was on edge those first few nights in the house, since Jaycee was sick. Because Jaycee's communication skills are limited and she cannot do a peak flow meter which many asthmatics use, I am forced to rely on what I see and hear for myself. I also check her temperature, heart rate, and oxygen saturation levels throughout the day to see how she is trending. If she gets really bad in her chest, she may sign to me that her stomach hurts, as she cannot tell what is exactly wrong in her body. That is the only thing she may tell me in an illness, so I am left on my own.

My best friend in an illness, the monitor

Those first few days after the move, I was worried about Jaycee. I was monitoring her like crazy and hoping she could come out of this illness without a hospital admission. I had consulted with her doctor once about her breathing too.

Then at 2 am on May 18, Jaycee's breathing suddenly got worse. We went to a local ER. She was transported to a children's hospital ER. Then, she was admitted to the ICU for Rhinovirus with asthma flare up.

On the first full day in the ICU, a social worker came to see me. This is typical. Usually, they ask if I need anything like hotel information. They ask if we have transportation home and if our son at home is taken care of while we are away. This social worker visit was different.

I was taken to a conference room down the hall from my child. The typical questions started. Then it launched into questions about Jaycee's daily care. I recited her medicines from memory. She marveled that I could work and keep track of all of Jaycee's needs and appointments.

Then the questions were directed to the present illness. When did you take her to the doctor? Why didn't you take her back when she got worse? Did you give her this or that rescue medication? Did you try this at home? Why didn't you call the on-call pulmonologist? Where is your husband? Your daughter is in ICU, you don't seem very upset about it. Are you aware how sick she is?

This was a long conversation. By the end of it, I was convinced the social worker was going to make a hotline call on me. Had Jaycee had showed pneumonia, this conversation wouldn't have happened. But, because she merely had an asthmatic reaction to a virus, my parenting was called into question. Now, I wanted to cry and be upset. I called a few of my friends and Jaycee's teachers to prepare them to be character witnesses for me if the need came.

I am like my favorite Seinfeld character, George Costanza. I thought of a million comebacks and things I should have said after the conversation. One of these included: Maybe if your ER hadn't stopped the continuous albuterol that the first ER started that helped her...And maybe if your ER hadn't let her go hours without a breathing treatment to "see how she would do", she may be in a better spot right now. But, I didn't say it. Frankly, I had been up for about 30 hours straight before this and wasn't thinking sharply.

Fast forward a bit, Jaycee was discharged on May 23rd. (But not before the same social worker came by to tell me to take Jaycee to the doctor more often when she's sick.) A few days later, I had to do the usual hospital follow-up appointment with our local doctor. The NP we usually see was on vacation, so Jaycee was scheduled with another doctor who didn't know her or me. Let me insert here that I had to beg Jaycee to get out of the van to see the doctor and practically pull her inside the clinic building because she kept signing, "Doctor. Hurt. Scared." We were both anxious to be there, and my stress level was high from just trying to get Jaycee into the building.

The doctor had read the hospital paperwork and checked Jaycee over well. Everything was going well. Before we left, he said, "I see they gave you an asthma action plan. That's good so you'll know what to do next time."

To which I replied (in near tears), "She's had a plan for years. I know what to do. She gets sick very quickly. I can't change that."

I don't remember what happened next except I found myself at home crying.
I was exhausted from the hospital and post-hospital care, which included round-the-clock breathing treatments that I set alarms for and completed. I was trying to adjust to life in a new house along with the rest of my family. And, now two different professionals voiced their concerns over my ability to care for Jaycee properly in an illness. I wanted to curl up in bed and never come out.

A day later, it was May 28th. Happy birthday to me! I wasn't feeling it at all. I was stressed and anxious. I was sad and confused. My husband was off work for my birthday and offered to take me to my favorite restaurant. Jaycee was still doing breathing treatments but we were able to go quickly to eat between treatments.

I cried on the way to the restaurant as I told my husband everything I was feeling. The kids were with us, so it was one of those contained cries with a lot of heavy breathing to try to mask the crying. He was ready to go punch a few professionals for me, but he didn't. He told me not listen to them and began to detail all the many things I do for Jaycee. He assured me the hospital admission was not my fault, which I knew at one time. We sat in the Chili's parking lot waiting for me to pull it together so we could go inside and eat.
Me faking a smile at Chili's on my birthday last year
I ate the delicious Chili's skillet queso and looked at my daughter who was sitting in a restaurant and not a hospital bed. That was a reason to celebrate!

There are times in my life that I can't wait to be over. I am certainly glad those days around my birthday last year are history. I do many, many things for my daughter to help her progress and stay well. I felt horrible last year when I was given the impression that I had done something wrong. Fortunately, I didn't need character witnesses because a hotline call was never placed. But I was on edge for a few months hoping Jaycee wouldn't go back in the hospital for an illness and force me to meet with that social worker. (Thankfully, she made it almost a year before going back, and there was no social worker sent to question me!)

My birthday this year was much less dramatic. Thank God for that! This year, the smiles in the photographs were real, and it really was a happy birthday.
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Thursday, May 25, 2017

Therapy Tip: How Much is Enough at Home?

Here it is...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:

How much extra help is enough at home?

Being a parent makes life busy. If you are a parent of a child with developmental delays and/or a disability, life is even busier. Therapy is a big part of a child and a parent's life when these delays are present.

When Jaycee was 2 months old, I started her in home early intervention therapies, specifically physical therapy or occupational therapy. Before she turned 3 years old, she had 4 different therapists addressing all areas of development because she was globally delayed.

These therapists were extremely helpful. Part of their job was to give me ideas to help Jaycee at home. If you have 4 people giving you ideas every week, then you might understand why I felt overwhelmed at times during those toddler years. While they did their job well, I felt I HAD to do home practice with Jaycee or else I was a bad mother. I also felt her progress or lack thereof was a direct result of what I was doing with her at home. I pressured myself to run her through exercises even when she clearly did not want to participate. It was extremely hard finding a balance between helping Jaycee with her developmental needs and not feeling crazed by the home activities that I felt needed to be done.

Now that Jaycee is 11, I have a better perspective. Our life does not center around therapy appointments and home intervention practices. I look back on those early years and regret many things I did. I let therapy take over. While my help at home most likely did help her achieve some skills, I hated doing home therapy most of the time. Looking back, I can see too that some things we were trying to work on were just too hard. She needed more brain maturation and time not more repetition and practice.

While I am past those critical early years with my daughter, my job as a pediatric speech-language pathologist means that I am still in a position of offering families ideas to build skills with their toddler at home. Many parents question me about how they can help their child.

Here are some things I tell these parents in our on-going discussions on helping at home:

-How much home intervention by parents is enough?
Every parent and family is different. Some parents like to focus on specific tasks throughout the day. For instance, they may focus on getting their child to say "drink" whenever the child is thirsty. Another example would be going over a few body parts at bath time during the week. Some parents like this idea of spreading out the home interventions throughout the day in natural routines. That is how the birth-three program is designed to help parents.

Still, other parents like to block off times to "work" with their child. This is what I always preferred with Jaycee. I set aside 20-30 minutes a day working on various tasks. I made a chart (I know I'm strange) marking what I would do for the 5 blocks of time a week. One day would be a sensory activity, another would be gross motor, another would be a signing/language activity, etc. It is not to say that I ignored Jaycee the rest of the day. I merely liked having our home therapy time together and then scratching it off our list of things to do. I did not like spreading things out all day. It didn't work for my brain.

Deciding what is enough is difficult. It really depends on your child. Speaking as a parent, if home intervention is causing lots of stress, then it's time to reconsider what you are doing.

-Can we have days off?
Yes!! Everyone needs a day off! Please take a day off from therapy and just enjoy your child. You are probably doing things to help them throughout the day that you aren't aware of. So, even on your days off I am sure there is something you are doing to help your child in a natural way.

Near the end of my daughter's birth-three program experience, she sometimes had two, 1 hour therapy sessions in a day. On these days, I did nothing specific to "work" with her. I imagined she had enough therapy already and didn't need me to do even more.

-You mentioned that I am helping my child naturally without really trying. What do you mean by this?
There are many ways parents build language naturally with a toddler. Many parents just instinctively do these things. Here are just a few examples:
-Peek-a-boo and patty cake are social games that we often play with toddlers. This encourages social interaction and imitation, which are important components of language development.
-Nursery songs are also commonly sang to babies and toddlers. Songs like "Wheels on the Bus" or "Itsy Bitsy Spider" are great for language because they are repetitive, encourage vocalization, and also encourage imitation as we look for the toddler to mimic the motions we do.
-Simply playing with your child is another good way to help them. When you play with them, you are modeling words and showing them how to play with toys. This encourages them to imitate what you are doing and saying.
-If you are talking to your child, you are modeling language. The main way a young toddler learns language is by hearing it from another person. If you are speaking to your child, then you are helping them understand new words and hopefully (and eventually) say those words.
-Giving your child directions is a way to target receptive language (the understanding of language). By telling your child to 'come here,' 'give it to me,' 'get your cup,' 'give me five,' 'give me a kiss,' you are checking your child's understanding of language via simple directions.
-Books are also things that parents often naturally do. Reading books encourages the child to look at pictures, build vocabulary, and attend to an activity that requires listening.

Finding a balance between therapy needs and home life can be difficult, especially if your child has more than 1 area of delay. It is important to find that balance to maintain healthy relationships among family members and to decrease stress that may arise. I hope that I have showed you that approaching therapy can look differently from one home to the next. If you are needing help finding this balance or for some better strategies to integrate activities into your daily routine, please ask your child's therapist.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, May 23, 2017

When You Doubt God

There is a place where darkness slowly creeps in to your life. You might have a strong faith in God, hope for your future, and an optimistic outlook. Then something happens to change that.

A small shadow of darkness is cast into your otherwise bright heart. Then the shadow grows and grows. The tiny dark areas that were noticeable but manageable weren't worrisome, but then one day they seem to take up more and more space casting more darkness in your heart.

Maybe it's not a big change at first. Then weeks, months, or years later you realize something has happened. The light that once guided you is now a small flicker that barely cuts through the darkness that ruins so many wonderful things about life.

Doubt is a horrible thing that brings darkness into our lives. It might begin with a thought such as: Why did this happen? Where's God while I'm suffering? God, do you hear my prayers? Nothing is going right in my life.

Doubt threatens a person's faith. It makes you question things you never once questioned. It gives you thoughts that never would have entered your mind under normal circumstances. Doubt changes your attitude. Doubt reminds you of past hurts. Doubt easily finds the negatives in a situation.

Doubt is an illness that attacks a person's faith. Sometimes, it's a temporary illness causing some momentarily damage to one's faith, but the person recovers fully with no long term effects. Sometimes, it's a chronic condition that a person must wrestle with the rest of their lives because it was never treated properly. These people want to love and serve God, but they can't get beyond some things they don't understand in their lives. Other times, doubt causes debilitating flare-ups that are triggered by some event that causes emotional and mental difficulty for the Christian trying to believe through some difficult circumstances. Sometimes, it kills a person's faith causing them to walk away from God or church.

I hope you are not like me.

I hope you have never sat in a room feeling like God is no where no close to you.

I hope you have never doubted your faith. Watching someone you love suffer brings opportunities for doubt to enter. I want to logically and spiritually understand why "bad" things happen especially to "innocent" people (like babies). I want to know why sickness attacks my daughter again and again. I want to understand the reason for the pain and trauma.

In wanting to understand, I allow doubt to enter. I find myself questioning God and having thoughts about Him I have never had. My mind takes me in circles, and I can't make sense of anything. And, it's all because of doubt. That's not a good place for anyone.

That's when I hope you are like me.

I hope you have learned to recognize doubt for what it is. I hope you know to put a stop to the thoughts that pull you from God. I hope you have strength to pray, attend church, and read scripture when it feels like nothing is coming from it. I hope you make honest statements to God and ask Him for help and faith to believe. I hope you cut yourself some slack and realize that even people like John the Baptist had moments when they doubted (Luke 7:20). I hope you can stop the doubt, remind yourself of the things God has done in your life, and not let doubt become a chronic condition.

In case you need reminded, God is real. He cares, and He is your solution to your problems.

My tears have been my food
    day and night,
while people say to me all day long,
    “Where is your God?”
These things I remember
    as I pour out my soul:
how I used to go to the house of God
    under the protection of the Mighty One[d]
with shouts of joy and praise
    among the festive throng.
Why, my soul, are you downcast?
    Why so disturbed within me?
Put your hope in God,
    for I will yet praise him,
    my Savior and my God.

Psalm 42 (NIV)

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Thursday, May 18, 2017

My Favorite Apraxia Products

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:

My Favorite Childhood Apraxia of Speech Products for Beginning Speakers

May 14th was Apraxia Awareness Day, so the last few posts of mine have been on the topic of Childhood Apraxia of Speech (CAS). As a speech-language pathologist, I have treated children as young as 2 for suspected or diagnosed childhood apraxia of speech. You might think that doing apraxia treatment for young 2 year olds is impossible, but it is not. Below are some of my favorite resources for therapists (or possibly parents) to help guide therapy.

-Kaufman Speech Praxis Kit 1:
I absolutely love this kit available here. It was designed by Nancy Kaufman, who is a speech-language pathologist. The Kit 1 has words and early developing sounds that are appropriate for toddlers and pre-schoolers such as /h/, /b/, or /w/.

The kit features picture flashcards that break down words by their structure. There are consonant-vowel words, vowel-consonant words, and consonant-vowel consonant-vowel words, for example. On one side of the card is a picture for the child to see while the back shows the adult how to model successive approximations to shape correct word forms for the child.

Some people do not like doing flashcards in therapy, but this kit is more than just a set of flashcards. Although, I can get many young children to sit and do these flashcards successfully. The cards essentially provide a word list for each word structure group. I like to find objects that can reiterate the words on flashcards (i.e. a girl doll for mommy, a cow for moo-moo, or a dog figure for puppy) in order to get more practice with these word targets. This kit has been my number 1 resource in therapy sessions as it helps me choose word targets and continue moving the child through more complex words structures. There is also a small manual included with tips and instructions on how to use this treatment approach.

-Speech Steps:
Speech Steps is a book with reproducible pages that target specific words and sounds. Like the Kaufman Kit 1, it does have many early developing sounds that are appropriate for young children including just vowel targets. It also targets C-V (consonant-vowel), CVC, CVCV, etc., so that you can practice making more complex word structures. Each worksheet page has 5 steps drawn on it. On each step is a word with a picture for the child to say. The workbook is organized by sounds (i.e. initial, medial, and final /p/).

In therapy, I copy a particular page to go along with what I am wanting the child to work on. I find the actual steps on the page as highly motivating. We sometimes just use our fingers and climb up each step while saying the word. Because there are only 5 words/pictures on a page, it is usually short enough for even 2 year olds to complete if we add in stickers, coloring, or stamps. This is just another tool I use in sessions along with everything else. But, I do like having some sort of paper to leave with the family so they can remember some word targets or possibly go over it again with their child on another day. This book is available from Super Duper.

-No-Glamour Vowels:
This is another reproducible book that focuses only on vowels. My experience with toddlers with suspected or diagnosed CAS has been that many have missing vowels or have vowels that are "off." This workbook is a very thorough resource for vowel work. First, it has a wonderful vowel production screener, which is really helpful when determining which vowels the child can and cannot say. It targets all vowels both long and short as well as diphthong vowels (ow, oy). Each vowel is introduced in the book giving statistics for when it should be mastered, a description of how this vowel is made with your mouth, and ways to elicit the vowels. There are also activity lists giving examples of how you can target a particular vowel in play or a fun activity. Another great feature is a word list for each vowel.

The meat of the book is reproducible picture pages for each vowel that can be used a few different ways. In therapy, I have used the pictures to make little books for word repetition. Again, I like to have some physical handouts or papers for parents to review what we have done, so this is a great resource. Like many of the other products, this book targets vowels in word structures such as VC, CV, CCV, CVC, and up to harder structures. This book is also written by speech-language pathologists and is available from LinguiSystems.

-Word FLIPS for Learning Intelligible Production of Speech:
Word FLIPS is a great product that is perfect for repetition. It has a picture representing a word on a card times three. There are three sets of cards spiral bounded so that the child or adult can flip the first, second, and third picture cards over one at a time. Though this picture above shows three different pictures, there are three sets of the same pictures. These multiple picture sets are great for getting those repetitions we try so hard to get in CAS therapy.

Another great thing about this for toddlers with CAS is that it contains very simple words that are CV (Consonant-vowel). This is perfect when a child is targeting CV and you want to add in another way to practice these words. I have found this book to be helpful and motivating for the children in therapy. This product is also available from Super Duper.

-Consonant and Vowel Letters:

When I am treating 2 year olds with suspected or confirmed CAS, some have a very limited number of consonant sounds. Because of this, I often use alphabet letter based activities to work on imitating simple consonants in isolation ("b-b-b"). Using actual letters while working on simple consonant sound imitation pairs the sound with the letter. While a 2 year old doesn't quite understand yet that a letter makes a sound, I just want to expose them to this connection early into the treatment process. This can help lay a foundation for reading, phonics, and spelling which are problem areas for these children later on. I have had many 2 year olds who will pick up a letter k magnet and make the appropriate /k/ sound after doing this for a few minutes in each session for a few weeks. Seeing them memorize sounds to letters lets me know that this strategy is doing double duty, and I hope it helps them later on it life. The letters in this picture are available from Lakeshore Learning.

Final Thoughts
CAS therapy requires a very well planned and systematic treatment approach. There are several products available to help therapists or parents along with other strategies using toys and books. These are some products I have found useful. I hope that if you are seeing young CAS children that you might find them helpful too.

(These are genuinely my own opinions. I am receiving no compensation for promoting these items.)

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Monday, May 15, 2017

Hard Things When Your Child has Apraxia of Speech

Did you know that yesterday was Apraxia Awareness day? There are many awareness days throughout the year now, but this one is important to me. Childhood apraxia of speech (CAS) is a diagnosis that can severely affect a child's ability to produce verbal speech. 

The Childhood Apraxia of Speech Association of North America defines CAS as:
a motor speech disorder that first becomes apparent as a young child is learning speech. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech.

As a speech-language pathologist, I have treated some children with CAS over the years. But, my own child was diagnosed with severe CAS around age 5. Speaking does not come "naturally" for these children, and they require intensive speech therapy and home intervention strategies. When you watch your child struggle to make simple sounds and words, it can be difficult as a parent. Here's a few reasons why:

1. The repetitions needed to learn a word are exhausting.
Repetitions are critical when treating CAS. In order to help the child build a connection from the brain to the mouth (or more specifically the lips, tongue, jaw, or palate), repetitions are critical for the child to "learn" how to say a word and "remember" how to say it later. In other words, repetition builds memory. Getting the repetition needed in young children can be tiring. A mom trying to get multiple repetitions of "go" may line up 10 hot wheels cars and say "go" as she pushes 10 cars one at a time. Then the mom will try to get the child to do it. Then repeat, repeat, repeat until the child loses interest. Another repetition activity may be saying, "bug" as you point to all the bugs on the pages in the Ten Little Ladybugs book. It can also be a mom saying "neigh" as she puts 10 little horse figures one at a time in a wagon.

When as a parent you are working on repetitions, you can imagine how annoying the sound of your own voice can become. If your child is barely talking, you might be saying all of these word models with little repetition from your child. It can feel like you are getting no where. But, when the repetition does happen, it feels magical. Still, coming up with creative ways to get these repetitions can be exhausting.

2. The random spontaneous words are both good and frustrating.
Often with CAS, there are times when the child will blurt out a word randomly. However, that word is said so easily only for it to be gone. It can be a happy moment for the family because a new word is exciting, especially when the words are few. But, then the word disappears, which can be disappointing and frustrating. Random spontaneous words can occur because something clicks and comes together in the child's brain and mouth at that moment. The word was not said because there was a firm motor plan established, so the child is unable to say the word again on demand.

One day, the kids and I were getting ready to leave the house. Jaycee was ready to go and was getting frustrated that her brother didn't have his shoes on yet. She pointed to his flip-flops and said, "-ip -op." We looked at each other and said, "Jaycee just said flip-flops!" It was so neat, but then it was gone. We tried and tried in vain to get her to say it again, but it was not to be. She has recently started attempting flip-flops again consistently, but that first spontaneous attempt at it was at least 2 years ago!!
Jaycee signing "deer"
3. People's inability to understand CAS can lead to awkward situations.
CAS is not well-known, so many people don't understand common features of the diagnosis. With CAS, receptive language is much stronger than expressive language. In other words, the child understands much more than they can verbalize. With my own child, Jaycee was only able to say 3 words when she could identify all her colors and shapes. She could sign all her alphabet letters and knew hundreds of other signs. It might be easy for people to draw the conclusion that Jaycee should have been able to speak if she could sign so well. But signing bypasses the mouth. To me, it showed that Jaycee could communicate and understand language well, but the mouth couldn't form the words. But to others, it looked like she was simply choosing an alternative method of communication. Yes, people made a point to tell me that!

Another common feature that creates some awkward situations is those random spontaneous words. A person well versed on CAS knows that these random words like "flip-flop" can occur as a fluke connection, but it doesn't mean the child has the motor plan to replicate the word.

A by-stander may hear a word like that and say, "Did you hear that? She could talk if she wanted to." "She chooses not to talk." "Well, that word just proved no one must be making her talk at home because she just talked!" These were the moments when Jaycee was younger that I had to control my eye roll and my mouth.

CAS is a real and complex speech disorder. It is hard as a parent to watch your child struggle to talk when others develop speech so naturally. But, many children do make progress over time (the amount of time depends on the child and if other diagnoses are present). When those words do actually come out, it makes all the hard days worth it!

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Thursday, May 11, 2017

Therapy Tip: Down syndrome & Childhood Apraxia of Speech

Welcome to Therapy Thursday! This is the day that I share a tip based upon my experience as a pediatric speech-language pathologist and a mother of a child with Down syndrome. Today's tip is a personal one for me, because my daughter has both Down syndrome and Childhood Apraxia of Speech. So let's talk about this dual diagnosis today, so you can know what to look for in a child.

Down syndrome & Childhood Apraxia of Speech

May 14th is Apraxia Awareness Day, which truly needs awareness. I have found very few people in the general population who have heard of Childhood Apraxia of Speech. There are even fewer people who know what it is exactly.

Childhood apraxia of speech is best defined here. But basically, CAS onsets in childhood and makes it difficult for the child to move their mouth to form sounds and to put those sounds into syllables and words. These children require intensive speech therapy to help with motor planning in order for them to achieve more complex words forms (mama versus mommy) and to be able to build phrases and sentences.

Childhood apraxia of speech is a motor speech disorder that can occur on its own. But, it can also be found in children with other diagnoses such as autism or Down syndrome. Diagnosis can be more challenging for a child who already has a diagnosis that impacts their development, cognitive abilities, or language development, but it is possible to make such an assessment.

Libby Kumin is a speech-language pathologist who has written and researched many areas of Down syndrome. Her research estimates that 15% of children with Down syndrome also have a diagnosis of childhood apraxia of speech. However, this statistic may not be well known among families and speech-language pathologists.

My daughter was diagnosed with severe CAS when she was 5 years old. It was a long process. I hope by sharing some of our experiences, then other parents may know what to look for in their child with Down syndrome.

Here are some red flags I noticed in Jaycee from birth-3 years:
-She babbled very little as a baby. If she did babble it was something simple like "dada" with no long strings of varying consonant sounds.
-Jaycee babbled "dada" around 10 months old. I was so excited to hear this, however she didn't add anything else to this babbling for months and months.
-Jaycee was able to learn and use sign language well. By the time she was 3, she knew well over 100 signs. Yet, she couldn't say something simple like mama.
-Her first word was "bye-bye" at 29 months old.
-By the time she was 3, Jaycee identified several colors, knew several shapes, and could identify several body parts. Her receptive language was far better than her expressive language, which is a hallmark of CAS for any child with or without Down syndrome.
-Her spoken vocabulary at age 3 was limited to dada, papa, bye-bye while her signing vocabulary was growing rapidly.
-When I did have Jaycee try to imitate sounds/words, she displayed oral groping-when the child moves her lips or tongues in an effort to figure out how to produce a sound but no sound comes out.
-She had great difficulty learning to drink from a straw. It took months of practice for her to learn to put her lips around the straw and suck liquid up. She might do it once but not be able to do it again. Only through months of repetition did she finally learn how to do it.
-Jaycee had lots of feeding issues as a toddler. She gagged on many textures to the point where she vomited! This occurred daily for months. Jaycee was finally off of baby food by age 2. But she was a disordered eater for a long time, unable to tolerate mixed textures like spaghetti. Things like green beans or applesauce were fine but pizza was hard for her to eat and enjoy. (She is way past all these feeding issues now!!!)

The path to diagnosis:
By the time she was 3, I was convinced that Jaycee had CAS. The problem was she was young to be diagnosed, especially since she had Down syndrome. When I mentioned it to her therapists or other therapists I knew, no one agreed with me. They told me she would be a late talker because of her Down syndrome. They told me to give it time. But, I knew a child who could sign to name an alphabet letter and could sign 15 different animal names correctly but couldn't imitate a /m/ wasn't normal for Down syndrome.

I let it go and started addressing it myself. I started to work with her at home using the Kaufman Speech Praxis Kit 1 and using exercises recommended by Talk Tools. It was painful! She barely made any progress. Jaycee basically made vowel approximates for every word leaving any consonants off, if she would even attempt the word I was targeting. Speech imitation was almost non-existent at first. I read up on CAS and Down syndrome and investigated techniques that could help her.

Finally around 4.5 years old, I requested an evaluation with a speech-language pathologist (SLP) at the closest Children's hospital. This SLP assured me that she had experience with both Down syndrome and CAS and would be able to determine if Jaycee had it. A few months later, Jaycee was tested and the diagnosis of severe CAS was given with the recommendation for intensive speech therapy following an apraxia treatment approach. Due to the severity of her CAS and good receptive language, a communication device was recommended since this SLP believed that Jaycee would struggle to learn to speak for a very long time. (She was right!)

Jaycee's home screen on her communication device
And today.....
Jaycee is now 11 years old. Speaking is still difficult for Jaycee, but she has started attempting more words in the past year than ever in her life. She will even attempt phrases at times but most of her consonants are missing. For example, she'll say, "Um, -a- -oo-," for 'Yum, that's good.' There are many consonant sounds that she has never produced (i.e. v) and some diphthong vowels she has never produced either (i.e. oy). But, our family has become grateful for every attempted word that she can say. Sign language and her communication device are still used in her everyday life. Jaycee has created many of her own gestures or signs for different people or items over the years. Basically, Jaycee uses total communication which means we accept communication from her in any form.

It is important to note that Jaycee has a severe case of CAS. CAS can range in severity from mild to severe. Children with CAS can make progress and learn to speak. Jaycee is just one example and may not represent what your child has in store for their future.

I hope by sharing these things about CAS, parents will learn that this can happen with Down syndrome and it is difficult to get a diagnosis so look for the right person who can help you.

My advice is that if a child with Down syndrome is not talking by age 5, they should be comprehensively evaluated to rule out CAS. Of course, hearing should be evaluated first as this is another common issue that could affect speech development. CAS is difficult to diagnose in any small child but especially Down syndrome. It is easy for professionals to blame the child's lack of verbal speech on a language delay, intellectual disability, or on weak oral muscles due to hypotonia associated with Down syndrome. Therefore, a speech-language pathologist with experience diagnosing CAS is essential in order for a diagnosis to be made. There are many hallmarks of CAS that are true regardless of Down syndrome or not, so a definitive diagnosis can be made.

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

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Monday, May 8, 2017

How I Save Lives

I'm not a nurse. I'm not a doctor. I'm an ordinary person, yet I may have saved a life.


Through blood donations, I have been able to help those in need. Since today is World Red Cross Day, there is no better day to share how the American Red Cross has touched my family. The Red Cross has many important humanitarian causes, but blood donation is the one that has personally affected me.

My need to do something good for the world led me to give my first blood donation in my twenties. I attended a church that was hosting a blood drive. I was able to speak with people who had given blood several times in order to calm my fears. Needles don't necessarily bother me, but I wasn't excited about that part. I had heard stories of people getting sick or fainting afterwards too. I didn't want to pass out or have a bad reaction after donating. I let those fears keep me from giving blood for many years as I figured there were plenty of other people out there who were donating.

It went better than I thought it would. I felt slightly fatigued the rest of the night, but I was fine by the morning. It went so well, that I gave a couple of more times.

Then, I became pregnant with my daughter, Jaycee. That meant I was no longer able to donate blood until after the pregnancy. When Jaycee was born with a congenital heart defect, she needed open heart surgery at 3 months old. A blood transfusion was part of her recovery. Because someone donated blood, Jaycee was able to receive the blood she needed. It was then that I realized blood donation truly is needed to save lives of people, even tiny babies with a hole in their heart.

After that, I wanted to give blood, and I did a few more times.

Then life happened. I let almost 8 years go by without donating. I had many reasons why I didn't donate. Besides her heart defect, Jaycee had developmental delays associated with Down syndrome. This made life hectic with therapy and doctor's appointments for some time. I had another baby. I worked part time and rarely had a babysitter when the blood drives were taking place. I can give a list of excuses, but I will say that it just wasn't feasible for me in that stage of my life.

As my children got older, I decided I needed to start donating blood once again. It really is an easy process, and not everyone who is able to donate blood does. I have finally gotten to 10 donations!

Blood donations are important, and one day you might have a loved one who has benefited from a donation. If you are able to give blood, don't let your reservations stop you. It is even easier now with features like Rapid Pass, which allows you to do a good chunk of the screening questions on-line prior to going, and donation scheduling, which allows you to pick a time to donate rather than waiting in line for an unknown amount of time. To read through the eligibility requirements, please visit the American Red Cross website.

Hope to see you at the next blood drive!

You can read more about the history of World Red Cross day on this site.

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Thursday, May 4, 2017

Therapy Tip: Help! My Child Pronounces Speech Sounds Wrong!

Welcome to Therapy Thursday! 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 tip is:

I'm Worried About My Child's Pronunciation of Speech Sounds! What do I do?

Photo By Chaojoker - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=18159837

I have been working in the field of pediatric speech-language pathology since 2004. A big part of the job is evaluating and treating articulation disorders. This is a fun part of the job for me because children can pronounce words and sounds all sorts of ways. Treating these errors and hearing improvements is exciting and rewarding!

Articulation is the fancy speech therapy word for how a child produces speech sounds. Sometimes, a child makes one or two specific sounds incorrectly such as wabbit for rabbit. Other children are very difficult to understand because they make errors on multiple speech sounds.

Parents often hear many of these errors in young children. But, they don't often know if the errors are age appropriate or warrant speech therapy. If your child is making errors, there are many things that a speech-language pathologist will consider when screening your child or evaluating them.

First, the child's age is important.
Research has been completed that shows when certain sounds should be developed. Click here to visit a developmental norms chart. From this, you can see that /p, b, m, w, h/ are the first sounds to be fully developed in a toddler. You can also see that /s, z, r/ takes a long time for many children to develop. We wouldn't expect a 3 year old to say the /r/ sound correctly, but we would definitely expect a 4 year old to have the /h/ sound developed. This chart of developmental norms is the best resource parents can use to check to see if their child should be expected to make a certain sound correctly.

The American-Speech Language Hearing Association (ASHA) also provides good information on this subject.  ASHA reports that almost all children make some sort of speech sound errors while they are developing their speech. But, they report that all sounds should be developed by age 8.

Developmental norms for sounds are important, but the child's health history is equally important.
If a child has a history of ear infections or multiple sets of ear tubes, then we can understand why a child may make some speech articulation errors. If ear infections are an on-going problem, then this should be a factor that the speech-language pathologist considers. If a child has a diagnosis such as Down syndrome, then we know that the oral features may contribute to certain speech sound errors. Children with autism or intellectual disabilities may make errors in speech too, but they may not be able to complete formal testing at a young age due to their cognitive abilities. Speech-language pathologists can screen or evaluate children that fall into this category and decide if and when articulation therapy may be warranted or successful.

The type of errors the child makes is important.
A speech language pathologist listens to articulation errors and decides what kind of errors the child is making. These errors may be:
-distortions (i.e. a child makes an /s/ sound with his tongue protruding forward making it sound "off")
-substitutions (using a sound in place of another such as /w/ for /r/ or /t/ for /d/)
-omissions (leaving a sound off completely as in tu- for tub)
-additions (adding another sound in where it's not needed)

Some errors are considered typical errors such as making a /t/ for a /k/. Other errors are atypical such as /h/ for /f/. Atypical errors make a child more difficult to understand because it's something that a listener wouldn't expect. Many atypical errors or too many of the typically occurring errors may make a child eligible for speech therapy.

The Bottom Line:
If you have concerns, consult with a licensed or certified speech-language pathologist (SLP). This consultation may lead to a screening or a full evaluation. Sometimes, your young child may not qualify for services but the SLP may suggest a follow up evaluation in a certain amount of time if progress hasn't been made. Other times, the SLP may agree that speech therapy may be needed to correct the errors the child is making. This can often be a long process depending on the child's age and number or errors.

SLPs are trained in this area, so don't be afraid to call one and ask questions if something in your child's speech is making you worry.

Therapy Thursday is for educational purposes only and not intended as therapeutic advice.
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Tuesday, May 2, 2017

What I Saw in Myself in 'Beauty & the Beast'

A few weeks ago, my family eagerly entered the movie theatre anxious to see the new Beauty and the Beast movie. Well, three of us were eager; my son was sort of forced to go.

Jaycee was so excited to watch her favorite characters come to life on the big screen. Every preview of the new Beauty and the Beast movie Jaycee saw on television would result in her calling to me, "Mama! Belle! Beast!"

She has loved Belle for some time. Jaycee was in hospital's ICU a couple of years ago when I found a VHS copy of 'Beauty and the Beast' in a movie cabinet. The moment Jaycee heard Belle sing the opening song on the cartoon version, she became a true fan. During that hospital stay, we watched the movie several times as it was clear she loved it. When Disney released the movie on DVD recently, you bet I snatched one up for Jaycee.

As the lights went down in the theater and the popcorn flew into our mouths, Jaycee and I joyously anticipated the next couple of hours. We smiled all the way through the movie. It was lovely and simply brilliant. Surprisingly, I felt emotional during a few of the scenes because it made me think of my own journey to find hope and peace in my life. (If you are familiar with the story line but haven't watched the movie yet, there will be no spoilers.)

The day the prince was transformed into a Beast came without warning and so unexpected. He was placed in isolation in his castle with hope growing dimmer everyday. All of his servants were transformed into various living objects or household items. The main difference between the Beast and the other fun loving characters was that they managed to stay positive and find a way to enjoy life despite the form they found themselves in.

When Belle arrived at the castle, she soon found herself in despair too. She felt hopeless and did not want to be in the doomed castle forever. The difference between Belle and Beast was clear though. She allowed the others in the castle to speak into her life and build her up while Beast did not. Belle even asks (in a song, of course) "How in the midst of all this sorrow can so much hope and love endure?" Belle and Beast both find hope and love again all while in the enchanted/cursed castle.

Watching all of this play out on the screen, I connected with the story in a new way.

You see there was a time after I brought Jaycee home from the NICU that I found myself in an unexpected situation. My daughter's birth was no surprise but her Down syndrome, AV canal defect, and congestive heart failure was. That was life changing news for her, my husband, and I. The first year of Jaycee's life was tough. More and more health issues came up in her first year of life. This meant doctors and surgeries. It was overwhelming. As the days passed in that first year, my optimism for a happy future was fading fast and I isolated myself for awhile as I couldn't bear to be around most people with seemingly perfect lives.

I, like the Beast, had no hope for a time in my life. If you want to see what a lack of hope looks like, watch the movie. It makes you grumpy, pessimistic, jealous, and angry. I couldn't see a way out for my daughter's health conditions. I was worried her life was going to end prematurely. Life didn't see fair for her and our family. I didn't want to hear the pep talks from people trying to speak into my life. After all, they didn't really know how I felt it.

As I saw the transformation of Beast play out, I couldn't help but think of my own emotional transformation. It has been 11 years since Jaycee was born. Many of my thoughts have changed thankfully and hope was restored to me years ago. Jaycee's health conditions didn't necessarily resolve. In fact, she is on more medications and sees more specialists now than when she was a baby. Her medical scares haven't stopped. Yet, I'm coping better and have more optimism than when her medical diagnoses first came.

I have learned there are things that are out of my control. I can't predict my daughter's future nor stop the illnesses that threaten her life, but I can trust God in all situations. I can also allow other people of faith to speak into me when I feel myself slipping into some old thought patterns of fear and hopelessness. Not everyone can understand my personal situation, but most everyone can identify with loss or fears related to parenting.

Beast's transformation was made possible by the power of real love. My transformation can be attributed to that too, but the love I felt was from God. With God, we can find redemption. We can find hope even when nothing is changing in our situation. God can give us new eyes to view our situation, and friends along the way to help us in our journey. 

Beast got the ultimate transformation at the end as he became a prince again. After my hope was restored through God, I became myself again too. I was back to my happy and mostly positive self and the darkness faded away.

That is the miracle that God's love can bring. Certainly, I never imagined I would be reminded of this as I watched Beauty and the Beast, but it happened. How can God remind you of the hope and love found in Him?
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