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)

submit to reddit

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.
submit to reddit

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!

submit to reddit

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.

submit to reddit

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.

submit to reddit

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.
submit to reddit

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?
submit to reddit

Thursday, April 27, 2017

Therapy Tip: Can you Say...?

It's Therapy Thursday!! Wahoo!
This is the day that I share a tip based upon my experience as a speech-language pathologist and a mother of a child with special needs.

Today's tip is:

Can you say...

This is a very simple tip, but an important one. Are you ready?

As a speech-language pathologist, I rarely ever say to a child I am working with, "Can you say ..?" Working with toddlers who have little or no words, it may be surprising to you that I very rarely ask a child to say a word.

Here's the problem with "Can you say...?": The answer is yes or no. You are asking them if they can say something. You are not asking them to actually say it.

It may be semantics for some people, but these little things are important for speech-language pathologists!

When I want a child to say a word, I will say things like:
-"This is a car. Car. You say car."

-"Car. (Pointing to my mouth.)  Now it's your turn.  Car. (Point to their mouth.)"

-"Car! You try to say it. Car."

-"Car. Use your words. Say car."

See the difference? I'm telling them to say something not asking. This is a small difference that is very important! This isn't a magical strategy but one that's important to use when you have a child that is just beginning to say words.

If they don't say it, try again. You are just reminding them to speak and try every time you tell them to say a word. Don't ask them if they can say something, just tell them to try.

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

Tuesday, April 25, 2017

A Day for Wishes

There are things about raising a child with medical conditions that have made life different for our family. There have been scary moments in the hospital with my daughter, Jaycee, as I watched machines give her breath during a respiratory illness. There have been tearful departures as Jaycee left my arms to go off to an operating room with doctors. There have been an innumerable amount of prescriptions filled and specialty appointments scheduled. There have been times when I have hugged my scared child as I tried to convince her to enter a hospital for an ordinary appointment because she is frightened that she will be admitted.

The absolute worst part has been wondering if my child with Down syndrome, repaired AV canal heart defect, ablated Wolff-Parkinson White syndrome, asthma, lung cyst, obstructive sleep apnea, and GERD will live to be an adult. There have been a few close calls, but we are grateful that Jaycee is still here.

For some of the hard and scary days that Jaycee has had, we have also had a few amazing, one-of-a-kind experiences throughout her 11 years of life. One of those happy moments was made possible through the Make-A-Wish foundation. Make-A-Wish grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

In 2015, Jaycee was granted a wish through Make-A-Wish Illinois. (If you want to read how this process started and our trip, click here!) Through the generosity of many foundations and companies, Jaycee was able to meet that amazing purple dinosaur, Barney, at Universal Studios. She was ecstatic to see meet her favorite character as well as visit many Orlando theme parks with her family and stay at the Give Kids the World Village.

Jaycee's granted wish remains the most wonderful week in all of our lives. It offered unique experiences and helped us forget about the difficult moments from the past. We didn't know how much joy it would bring Jaycee and the rest of us nor did we realize the lasting impression it would leave on us. Two years later, we still look at pictures from that trip, and Jaycee communicates about her favorite experiences.

World Wish Day is celebrated on April 29th to mark the anniversary of the wish that began the Make-A-Wish foundation. Since the first wish in 1980, more than 350,000 children around the world have had their greatest wishes fulfilled by Make-A-Wish. Make-A-Wish is the world’s largest wish-granting organization, serving courageous children in nearly 50 countries on 5 continents around the globe.

When I think about all the people who have come together over the years to donate time, money, resources, and gifts to fulfill the wishes of children like my daughter, I am overwhelmed with the kindness and goodwill of others. There really is good in the world; you can find it with Make-A-Wish.

Visit wish.org to refer a child, make a donation, or learn more about the foundation.

submit to reddit

Thursday, April 20, 2017

Therapy Tip: I'm Worried About My Child's Stuttering

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

I'm Worried about My Child's Stuttering

Once in awhile, I will get a phone call from a worried mother who has a young child that has started stuttering. I understand why the mother would be so worried. Hearing your child struggle through words or repeat certain words or sounds can be difficult. If a child is stuttering in the toddler and pre-school age range, it does not automatically mean that the child will be a life-long stutterer. When should a parent worry about stuttering? Today, I will try to help you sort it out.

First off. You need to know about developmental stuttering:
Developmental stuttering is different than stuttering. Developmental stuttering begins early in life and will resolve on its own. Some children will begin developmental stuttering when they are having a huge growth in language or struggling with the grammar rules of language. The American Speech-Language Hearing Association has great information on developmental stuttering versus stuttering. They estimate that 75% of preschoolers who begin stuttering will stop on their own.

So, how do you know if it's developmental stuttering or true stuttering? Waiting it out is difficult for concerned parents. Besides just giving it time, there are other things that can give clues into what is happening with the child.

Things to consider when your child starts stuttering:
-Age of the child: Developmental stuttering may occur for children 5 and under. When a child starts stuttering before age 3, there is a greater chance that the child will outgrow it.

-Family History: If there is a close family member who stuttered, then the chances for your child to stutter increases. If that family member did not outgrow the stuttering, the likelihood of your child outgrowing it decreases.

-Time Stuttering: If your child has just started stuttering, then it's important to give it time. If the stuttering has continued past 6 months or has worsened, then this may signal that stuttering may not be outgrown.

-Gender: Gender matters, and it's something to consider when your child is stuttering. Male children are more at risk to continue stuttering. Girls are more likely to outgrow stuttering.

-Type of disfluency: The child who only repeats words or syllables once or twice is considered to be a sign of developmental stuttering.

Concerned? Confused? What next?
A speech-language pathologist can help parents determine if the child seems to have normal disfluencies, has stuttering, or needs intervention. A speech-language pathologist (SLP) may also help parents know how to react to the child's stuttering.

Speech-language pathologists have different backgrounds and experiences. Not every speech-language pathologist reacts to stuttering the same. Some may not want to evaluate a young child who has stuttered less than a year because they want to see if they will outgrow it. Others will evaluate a child who has been stuttering for 3-6 months in order to give the parent feedback and an initial opinion. If you are very concerned and can't get an evaluation from a local SLP, you may want to consult with another speech-language pathologist for assistance.

Personally, I am willing to evaluate any child who has been stuttering more than 3 months who has a concerned parent. During that time, I can look at risk factors and determine the number of disfluencies the child is having on a stuttering assessment. If the plan is to evaluate and wait and see, this early evaluation will give me something to compare to later. In other words, I can see if the stuttering is getting more frequent or less frequent in subsequent evaluations.

If your young child has started stuttering, you may not need to call for help from a speech-language pathologist immediately. But, there are some things you can do to help your child and ease your concerns. I highly suggest visiting the Stuttering Foundation website, which has tips for parents too.

Click here to read more from the Stuttering Foundation.

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

Tuesday, April 18, 2017

The Two Versions of a Hospital Stay

April 5th started out like any ordinary day.

Jaycee woke up once again with a junky cough that we had been treating with frequent breathing treatments. She had finished one course of steroids and antibiotics about a week prior for this same cough. I had checked Jaycee on her monitor that morning which showed her heart rate and oxygen saturations numbers where they had been running. I got the kids off to school and went to work for a few hours.

Before the school day would end, things would change drastically with Jaycee's breathing. Jaycee spent the next three nights in the hospital. It's hard to recount everything that transpired over that time. The hospital is able to condense the illness into just a few paragraphs in her thick medical chart.

Here's the hospital's version of that stay from her discharge report:

Here's the full story of what happened:
Jaycee's mother was driving to school to watch her son in a class program. Jaycee's teacher called with concerns about her breathing. Jaycee seemed tired and her oxygen saturation numbers (taken by Jaycee's portable monitor) was lower than the previous days. Jaycee's mother arrived at the school a few minutes later to check on her. Jaycee was given her inhaler again but her oxygen saturation numbers were still in the safe zone. Jaycee then vomited but otherwise seemed in no immediate danger.

School staff worked to clean up Jaycee while her mother attended her son's short program. About 20 minutes later, Jaycee's mother arrived back in her classroom to take her home. Jaycee's arms were splotchy and her lips were discolored. The monitor now showed Jaycee was having difficulty breathing and a third breathing treatment was completed at school. Jaycee then became incontinent.

Jaycee was taken to the emergency room by her teacher and her mother. Arrangements were made for Jaycee's brother before they left school. Initially, Jaycee's numbers looked better at the hospital. After some time, her heart rate and respiratory rate increased while her oxygen saturations started to decrease. Jaycee was placed on oxygen. An IV was placed, blood was drawn for labs, and a chest x-ray was taken. Jaycee continued to be incontinent, throwing up, and started to run a fever.

Jaycee's mother and teacher were informed that Jaycee was septic and would be transferred to a Children's hospital. Jaycee's mother was upset because Jaycee had been septic in 2013, which required a 4 week hospital stay and intubation to recover. IV antibiotics and steroids were started, fluid boluses were given as well as breathing treatments. Jaycee's father was contacted by phone of her change in status so that he could come straight to the hospital. Jaycee's parents immediately contacted people who would start praying for Jaycee.

Almost 2 hours later, the ambulance arrived to transport Jaycee. It had been delayed due to a heavy rainstorm. Jaycee's mother rode in the ambulance while her father drove the family's vehicle to the hospital.

Jaycee arrived at the pulmonary wing of the hospital around 9 pm. Her vital signs were much better but she still needed oxygen and frequent treatments. The doctors explained why they felt she was not septic and believed her symptoms were probably due to acute respiratory failure. However, if she did have sepsis, then her symptoms would return 24 hours after her antibiotics were first given. Jaycee's parents were hopeful but would feel more relieved after the 24 hour mark that came and went without a change in status.

Jaycee received breathing treatments and vest airway clearance round-the-clock during the admission. Jaycee had many desaturations the first night. She needed oxygen day and night initially but was able to be weaned off 24 hours prior to discharge. Jaycee did test positive for a cold virus but her chest x-ray was clear. Jaycee's parents stayed at the hospital and were involved in her care. Jaycee was discharged on April 8th on a long steroid wean and round-the-clock treatments.


The hospital's version remarks only on the major medical issues and interventions. My version acknowledges the impact on Jaycee and the people around her.

A hospital stay affects a family in many ways. My son suddenly found himself in his grandma's care. My husband and I felt the chaos of an unexpected admission and fear of what would happen to Jaycee. Jaycee was scared too and exhausted. Things didn't go back to normal immediately once we were all home.

A few days after leaving the hospital, Jaycee had to be coaxed out of our van for the follow up appointment with a local doctor. Even after she left the van, she was scared and reluctant to walk inside the clinic. I had to reassure her that nothing bad would happen today and we would go home right after the doctor saw her.

And so, there are two versions to every story. An unexpected health illness does more than just threatens a person's body. It disrupts lives. It causes emotional issues. It can separate families temporarily.

A hospital stay is much more than a few sentences in a patient's chart. It is part of a person's life story.
submit to reddit

Thursday, April 13, 2017

Guest Post: 5 Life Lessons I Learned During My Daughter's Therapy Sessions

This week my daughter is recovering from a hospital admission, so some wonderful bloggers are guest posting. Today's guest post is by Ali C. from the blog Crazy Cakes and Eskimo Kisses. I could relate to this piece so much when I first read it, and I hope you enjoy it too! ~Evana

My daughter began physical therapy when she was only four months old.  At the time, her hypotonia made it impossible for her to even lift her head, and her gross motor skills were extremely delayed.  I spent my days watching the therapist try to teach her how to roll over, and in the evenings, I did my best to imitate what I saw the therapist do. In whatever spare time I had left, I prayed that therapy would be the key to building up her strength and unlocking her potential.

And the days turned to months, and the months turned to years.  Rolling over turned into crawling, and crawling turned into walking.

I have no doubt that the early intervention my daughter received played an integral part in where she is today -- an age appropriate classroom, running, jumping, and dancing. But it wasn't until recently that I realized her therapy sessions taught me some valuable life lessons as well.

1. Measure life in inchstones; forget the milestones.  Technology makes it all too easy to quickly search developmental skills that your child should be reaching.  Social media makes it even worse. Often times, I was saturated in a sea of milestones -- reminders of what my child should be doing but was not.  While I was sincerely happy to see the accomplishments of my friends' children, I was also often left trying to shrug off feelings of envy and defeat.

Therapy taught me the beauty of an inchstone -- a small but powerful accomplishment. Sometimes in life, we become so focused on the mile, that we forget all the sweet inches that led up to it. Count what truly matters; ignore the rest.

2. It is OK to be afraid, but don't let your fears consume you.  Some days, it feels as if there is so much to fear -- medical procedures, surgeries and an endless slew of doctors around every corner. For the first two years of my daughter's life, I spent my nights worrying that she may never walk. I cried about the huge obstacles stacked against her. I cringed each time we were sent to see a new medical specialist.  And then, the other day, my daughter asked to take gymnastics.  I felt that old familiar fear immediately strike. What if she couldn't keep up?  What if she got injured?  I looked to her therapist for insight.  Her advice?  Don't let your fears stop your daughter from trying something new.

She was right. It is true that there are risks everywhere in life, but they are often accompanied by great rewards. Be bold. Don't let fears stop you from living.

3. Determination is key. Before my daughter started physical therapy, I gave up easily -- if something was too hard, or too time consuming, or if I was too tired. I gave up on diets. I gave up on projects. I was all too happy to be a self-proclaimed "quitter." Observing my daughter learn to walk uphill taught me the importance of a determined spirit.  I watched one day as her therapist helped her walk on the uneven ground sprawled out in front of them. My daughter's legs wobbled, the surface below her was soft under her feet, and more than once, she fell forward onto the unkind ground. But, she never gave up.  Fall after fall, she stood up more determined than the time before to master the hill.  Eventually, she did. 

Often times in life, we stand with unsteady legs on uneven ground. How many times we fall is not what makes us or breaks us.  How many times we pick ourselves up and start again is what defines us in the end. Falling is inevitable; picking yourself back up is a choice. Determination makes all the difference.

4. While determination is important, there is nothing wrong with taking a break.  There were moments during therapy sessions when my daughter would become tired or frustrated. I would watch as her therapist responded in various ways: She would give her a break.  She would redirect her.  She would remind her that if she finished the task at hand, they would do an activity of her choosing. And it worked. Every time. As an adult, I too experienced a daily helping of exhaustion and annoyance, but I rarely gave myself a break to recoup, relax and recover.   

When life throws difficult tasks or extreme stressors your way, do not hesitate to take a break. Read a book, go for a walk, listen to music. Allow yourself to recharge.  You are worth it. Frustration will not allow you to accomplish much, but a rested you with a fresh outlook is undefeatable.

5.  Hope is powerful.  With each fall, my daughter's therapist reminded me that we were a step closer to walking. In times of darkness and defeat, she recalled the many moments of light and triumph we experienced. When I focused on the obstacles and worries of today, she refocused me on the promises of tomorrow.

Therapy taught me this truth: In our lives, we will experience defeat and sadness.  There will be days when we are unsure of everything. There will be moments when giving up seems to be the easiest option.  We will compare and cry. We will feel extreme fear and bouts of envy.  But, at the end of each day, there will always be hope, and that is more than enough.

submit to reddit

Tuesday, April 11, 2017

Guest Post: A Hexagon, A Fat Cat, and A Rubber Chicken

My sweet little girl is home recovering from a recent hospital admission. To help me out, I have arranged some great guest posts by some writers I adore. First up is Tricia from Two Upside Down Turtles. Tricia is not only a blogger friend but a friend in my real life who I see at church. She has twin girls with Sensory-Processing Disorder and delays. I loved this story when I read it on her blog and hope you love it too! ~Evana

I allowed the words they spoke to keep me up at night.  They said the girls aren’t progressing. They’re not doing as well as they were several months ago.  It was one of those times when I wished I could put my fingers in my ears, hum a tune, and drown out what they were telling me.  I know what they said is true and fear began to grip my heart.  But then I began to truly look at our girls and I noticed that they are progressing in everyday life.

Hope crawled into my bed with her iPad and asked me to watch her play Monkey Math.  The game showed her 3 different shapes and she was supposed to press the oval.  Every time she pressed the oval it gave her 3 new shapes.  She was pressing ovals like crazy until she accidentally pressed the wrong shape.  She said “Oops…..that was a hexagon.  I need to poke the oval.”  What?  She knows what a hexagon is?  I had no idea she knew that.

We were working on auditory memory cards.   This is the story that I read individually to the girls.

These were the answers the girls gave me to the questions.
Who has a magic backpack?    
Hope: Zack        Mikayla: Jack (Oh….so close!)

Why is it magic?    
Hope: Because things won’t break     Mikayla:  Holds only things that aren’t heavy

If you look inside it, what will you see?    
Hope:  A rubber chicken    Mikayla:  A cat.  Zoe’s too big for the backpack.  (Zoe is our cat)

We worked on these same cards last year.  The girls could never remember the name of the person mentioned in the story.  Remembering names has always been hard for them.  But Hope got it right and Mikayla’s answer rhymed with the correct answer.  I couldn’t believe it.  That’s progress.

Why questions are the hardest questions for our girls to answer.  I didn’t expect them to answer the “Why is it magic?” question.  But they gave me answers. They weren’t the correct answers but I thought they were good answers.

When Hope blurted out rubber chicken I laughed and she grinned.   When Mikayla said Zoe’s too big for the backpack it showed that she’s developing critical thinking skills.  Our cat is huge and she wouldn’t fit in a backpack.  That’s the truth.

As I was putting the cards back in the case I was thinking about how I answer questions.  If I don’t know the answer I will say “I don’t know.”  It’s safe to respond that way.  I’m certainly not going to blurt out an answer and possibly be wrong.  That would be embarrassing and risky.  But our girls aren’t afraid to risk.  If I ask them a question they’re going to give me an answer.  If it’s the wrong answer they don’t care.  They just go on with life.  If they don’t know the answer then they’re going to make something up.  And let’s be honest.  Isn’t a backpack with a rubber chicken and a cat in it more fun than a sock, a rock, and a clock?  Oh how I need to be more like our girls.  They live life and they don’t worry about what anyone thinks.

Progress doesn’t always show up in a 45 minute therapy session.  But it shows up in the moments that we’re just living life.  It shows up when a little girl recognizes a hexagon.   It shows up when a fat cat can’t fit in a backpack.  Progress is important.  But I’m learning to not worry so much when progress doesn’t show up on a piece of paper.  Worrying takes away the joy of living life.   And sometimes I just need to stop, laugh at a rubber chicken in a backpack, and savor the grins on the faces of little girls who make my world a better place.

Click here to read the original post on Tricia's blog.

submit to reddit

Thursday, April 6, 2017

Therapy Tip: Building Language During Easter

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

Building Language During Easter

Here are 5 different therapy skills that you can address during the Easter season with things that you may have around your house.

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.

Now that you have some ideas, gather up all your eggs and have fun building your child's language.

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

submit to reddit

Tuesday, April 4, 2017

My Daughter's Independence

Independence is a goal that many parents of children with special needs have. Early on that may encompass little things like walking independently or feeding themselves. Later in life, independence goals may be doing their own laundry, going into a store alone, or living alone.

When Jaycee was 10.5 years old, she really started showing me that her need for independence was increasing. As I walked her into her first day of school in August, Jaycee got upset that I was coming inside with her. She tried to push me out of the school. Really!? I usually try to respect her wishes, but in this case I was carrying a large sack of school supplies that wouldn't fit in her backpack. I had to go inside with her.

She also has recently been telling me "ou-" ("out") while slamming her bedroom door in my face. Sometimes, she wants privacy and sometimes she is mad at me. My feelings may be temporarily hurt, but mainly I am glad to see that brown door swing inches from my face.

I don't mind her not wanting me around. It shows me that she is developing those typical child feelings. She is growing up and asserting independence. That's what I have always wanted for her. It's not always easy though.

Long ago, using scissors by herself was a big moment!

Sometimes, independence takes intentionality. That means I must choose to step back and let Jaycee do things on her own. Through some conversations with Jaycee's school staff, I have been challenged to teach Jaycee simple skills and help her do things on her own. Some of these things have been hard for me because I am scared of what it will lead to. Teaching her to use a microwave didn't take too long, but I worried she may not understand that certain plates or metals can't go in there.

Independence is a process! For months, I have been reminding Jaycee how to shampoo her hair. At first, Jaycee put the shampoo on her forehead. Now, it's actually getting in her hair. However, she still often forgets to wet her hair first before scrubbing the shampoo in her hair. Jaycee keeps trying though, and I'm glad she has an interest in doing this herself.

Independence takes patience! It is very tempting to just jump in and do things for Jaycee because it's easier. When she struggles with her coat or can't open a soda can, it's hard to watch her struggle. It's better to give her directions to try to help her become more independent, but this is hard!

Independence can be messy! For years, Jaycee has put her plate in the dishwasher and picked up after herself. Recently, she has started scraping food off into the trashcan by herself. I watch while grimacing as most of that food lands on the floor.

"She's trying," my husband reminds me. "It's a good thing."

He's right. I need to allow her to make messes and mistakes because that is how she will learn to keep doing things on her own.

I don't know what life will look like for Jaycee in 5 or 10 years. I have some goals in mind for her, but mainly I hope she continues to want to be independent. It's a process for both of us.
submit to reddit

Monday, April 3, 2017

How do IEP meetings make you feel?

Today, I am over on Comfort in the Midst of Chaos with a post on IEP meetings. Have you ever dreaded them? Have they ever been a source of anger or stress for you? Here's my advice on what to do. Read it here:

When You Dread IEP Meetings
submit to reddit

Thursday, March 30, 2017

Therapy Tip: Selecting Books for Toddlers

Welcome once again 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 special needs.

Today's tip is:

Selecting Books for Toddlers with Language Delays

If you have looked through the children's section of the book aisle in stores, you'll see a wide variety of options available. There are board books and regular books. There are cartoon drawings and books with real pictures. There are books on a wide variety of subjects and even some featuring familiar characters from television.

Which one do you choose?

If you have a child with language delays, then certain books may be more helpful. Here are some things I look for when selecting books for toddlers with language delays and why.

1. Books that are repetitious.
Sometimes, books that are repetitive are sort of annoying to read as parents. But, books that repeat most of the same words on every page have benefits for children learning speech and language. The repetition is great because the child can hear the same words over and over again. Some examples of these books are: Five Little Monkeys, Five Little Ladybugs, Brown Bear, Brown Bear What Do You See, and That's Not My Cat.

Repetition is extremely important for children with language delays. But, not only that, repetition word practice is necessary for children diagnosed with childhood apraxia of speech. These repetitive books often offer a way to get the child to say the same words many times, which is often the target in early therapy. Not every book you read to your child needs to be repetitive, but there are benefits to using these!

2. Books with real pictures.
I like to use books with real pictures to provide the child with a concrete visual example of the object. Over the last few years, there have been many books available for toddlers using real pictures. Some have different themes and some are designed for teaching "first words." These books are great for teaching basic vocabulary, and it helps when I can match up something in the child's environment to a picture in the book. I also like to use the faces of children in these books to work on body parts. Not every book HAS to have real pictures, but it is something I consider when choosing a book.

3. Books with touch and feel parts.
There are many books that contain different things to touch and feel on each page. I do love these books for a few reasons. For kids that may not like books, I have had good success getting them interested by having them touch the parts. They may not listen to the words on the page being read, but at least they are interacting with a book. For children with sensory issues, some of these touch and feel books provide them a nice way to stretch themselves to feel things that may be uncomfortable for them. Another reason, I like these books is that it gives an opportunity to target adjectives like soft, rough, hard, sticky, smooth.

4. Books on subjects that are meaningful to the toddler.
When you are working with toddlers that have 100 words or less, then the subject matter of a book is important. It should be meaningful to the toddler. Some books I have purchased contain pictures that are not relevant to the child's life. Take this book below for example.
I purchased this book because it was $1, so the price was right. Plus, it has some flaps on every page, which many children enjoy. I also like that this book isn't busy. Each page in the book has a theme that is presented with simply drawn pictures in rows. (Compare that to the touch and feel book with it's chaotic picture placement above.) Most of the pictures are relevant to the child's life, but some of them are not. How many toddler's first toys are yo-yos, tops, kites, and marbles? Despite some of its odd choices, I still like and use this book. I just focus on the words that are more relevant to the toddlers I am working with like ball, baby doll, and crayons. When I am working with children with delays, I rarely look/talk about EVERY picture on a page anyway, so I can ignore the pictures that I don't feel like the child needs to understand presently.

Still, it's a good idea to look at the book you are about to purchase and decide if the words/vocabulary targeted in it will be a good fit for your child.

The most important thing when searching for a "good" book is that the child will engage with it. If the toddler isn't interested, then it doesn't matter if you found a book with all the right features you are looking for. Hope this helps you find a good book for your child!

Related: Using Books to Build Language

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

submit to reddit