Tuesday, June 6, 2017

Hitting the Pause Button

Have you ever looked at your calendar and wanted to cry or scream and something in-between?

That's how I feel right now. The kids are home for the next couple of months for summer break, which always makes life busy and fun. There are mini-vacations planned that I'm looking forward to taking. There are doctor's appointments and a surgery that I'm not looking forward to at all.

And so, I am taking a little summer break from this blog to spend more time with my family and not worry about updating the blog.

In the mean time, I'll do some short posts on my blog's Facebook page. So, be sure to check that out.

You can also find me on Twitter here for 140 characters worth of reading.

Drop back in during the month of August when I expect to be up and writing again.
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Thursday, June 1, 2017

Therapy Tip: Taking your Child with Special Needs to Church

It's 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 special needs. Today's tip is:

Keys for Taking your Child with Special Needs to Church

When your child has special needs, certain places just aren't easy for a variety of reasons. Church is often one place that parents are hesitant about or have had difficulties with in the past.

One hindrance for church attendance and our children is that there is little support. This is not a dig at churches; it is a reality. At school, our kids have educational plans, special support systems in place, therapists, and possibly individual aides. At home, we parents have mastered our children's strengths. We also know their triggers and how to help them regulate themselves when they are upset.

Then there's church. If you are like me and attend a church where your child is "dropped off" in a classroom away from you, it can be very scary at first. But, I can tell you that having a child with special needs attend church is possible.

That being said, every child is different. Every church is also different. It may take make trial runs. It may take many weeks and months, but I am optimistic that there is some church in your area that is willing to work with you to help your child.

Here's some keys to help make church a place where your child can succeed.

First, give some notice.
If you are starting a new church or class, it might be wise to call ahead and speak to someone in the youth ministry. You might feel strange doing this but hopefully the church contact will be courteous and listen to your concerns. If a church has no experience with special needs, I wouldn't let that stop you from trying it out. All you need to find is people who are willing to listen and serve your child.

When we started a new church when Jaycee was 5 years old, we kept her in sanctuary with us for several weeks. She did well in the adult church, so thankfully that was an option for us. When we decided we would be staying at the church, I approached the children's church teacher at the time to let her know Jaycee would be joining their class. We chatted for a few minutes about Jaycee's needs, and she was ready for her the next week.

Jaycee (middle) praying with children at Bible School

Offer help to the leaders.
You know your child well. You can offer great advice and insight into your child to help them succeed. Most of the people working in youth ministry are volunteers. Few have special education training. You can't expect them to understand your child's diagnosis or what to do. But, you can help these people understand your child so that the time in church can be peaceful for them and your child. Give church staff ideas on things that calm your child or things that will trigger problems with your child.

When my daughter moved up to a new class in our established church, I had reservations about her adjustment to it. The first Sunday she was in the new class, I offered to sit with her and a volunteer who would be her helper for the next few weeks. As class proceeded, I told the lady what her mannerisms meant, when she was happy, and when things were bothering her. It was one Sunday that I gave up to give Jaycee the best shot for the next few weeks. It worked.

Another thing we did when she switched classes was to create a "Tips for Jaycee" sheet. Because there were different volunteers on Sundays and Wednesdays, we made a one page paper of basics to help the volunteers know and understand Jaycee. Some things on it were: Jaycee needs to be reminded to use the bathroom, Jaycee loves dancing and music, If Jaycee sits on the floor between the seats that means she's scared, etc. This helped all of the volunteers feel comfortable when interacting with Jaycee, who was nonverbal at the time.

Prepare your child.
If there is something that helps your child do well at school or in other situations, then use it to your advantage at church. If your child responds to social stories, then make one to explain what happens in class. If your child thrives on schedules, create a schedule of what happens in class so that they will know what to do. If they are anxious about when class will be over, come up with a way to help decrease the anxiety.

If someone at the church can't provide and make these things, then find other resources. If you can make them on your own, then offer to do this. If you have no way of making visuals or schedules for your child, then ask a friend, teacher, therapist, etc. Beg them if you need to.

Jaycee in front of the stage dancing to songs at church

Be patient.
Change often takes adjustment. This is true for everyone involved. It may take the church staff a few encounters to learn your child and know how to respond in different situations. If your child only makes it through half of class and needs to leave, don't give up. Brainstorm with the leaders and be willing to help. Be patient with leaders who are trying to work with your child while taking care of other children in the class.

Offer suggestions, not demands.
Many people in the children's ministry are volunteers. They are giving up their time and energy to serve your child and many others. Even though I have discussed things like schedules and visuals, please don't demand the church make these. Offer suggestions and ways to help. Suggestions are most likely better received in any place, even church.

Sometimes, there is a debate on what class a child should be placed in. One person wants the child in the class that is for their age/grade. Another person may want the child in the class that is based more on their developmental abilities. Again, I think you need to discuss your concerns, ask questions, and give your input. Placing a child based on chronological age or developmental age is a case-by-case decision. I think there are many factors to consider with this, and there is no right or wrong placement. Just be willing to try out different classrooms or visit them for yourself in order to help decide what may be best. If you are demanding that your child be in a certain classroom, then you may need to sit and discuss with the church leaders why your opinions are different and get their side of the story. Hopefully, they are willing to do the same with you.

Taking your child with special needs to church doesn't have to be stressful and difficult. There may be some bumps in the road. You may have to do some work to figure out what will help your child, but I pray you will find things that will indeed help. I hope you will find a church full of people willing to work with your family to see your child grow in God.

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

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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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