Guest Post! "Is it Down Syndrome or Childhood Apraxia of Speech" by Leslie Lindsay, R.N., B.S.N.

I am delighted to be a guest blogger with Chapel Hill Snippets and thank Ruth Morgan, SLP, for allowing me to share with you some common questions parents—and SLPs—have when it comes to diagnosing CAS in children with Down syndrome. 

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     When your child has special needs of some kind, it’s often difficult to tease out what presenting symptoms are “coming from” each disorder.  Is it the DS or the CAS?  It all becomes a murky bowl of alphabet soup…if you feel this way, you are not alone. 

     One mother of a child with Down syndrome shared this: “Lily’s therapist has always said she has ‘motor planning issues’ but blamed it on decreased tone. That makes it tricky—is the motor planning a result of the hypotonia or a disconnect with the brain?” 

     Meet Dr. Libby Kumin, CCC-SLP.  In 2003, she completed a survey study in an effort to determine whether CAS was a widespread problem for children with Down syndrome. Over 1500 families completed her survey.

•      16% of the children with Down syndrome in her study had either been diagnosed with CAS or had been told that their child had difficulties with oral motor skills.

•         Even when parents had not been given a diagnosis of apraxia, survey respondents often indicated their children were experiencing many symptoms consistent with CAS

•        Those symptoms of CAS that were seen in kids with Down syndrome were: difficulty being understood than their peers with Down syndrome, sound reversals, and sound errors.
•          The survey also showed that children with Down syndrome and apraxia, tend to begin speaking at a later age—around 5 years—than kids with “just” Down syndrome.  

     Wait a minute, you say…let’s back the speech train up.  What exactly is childhood apraxia of speech (CAS)?  “Childhood apraxia of speech (CAS) is a neurological childhood (pediatric) speech sound disorder in which the precision and consistency of movements underlying speech are impaired in the absence of neuromuscular deficits (e.g., abnormal reflexes, abnormal tone)…” [From: ASHA's Childhood Apraxia of Speech].

     While it is commonly understood that nearly every child with Down syndrome will have some hypotonia (low tone) in tandem with speech and language delays, you will also find that there is a subset of children who have bona fide CAS symptoms on top of the usual speech-language delays in Down syndrome.

     Often the diagnosis is missed because SLPs will say, “Oh, it’s just the Down syndrome [low muscular tone]” But the children with Down syndrome plus apraxia need different treatment than those who primarily have childhood dysarthria secondary to low muscle tone. 

     Historically, children with Down syndrome have not been diagnosed as having Childhood Apraxia of Speech. That’s because early studies describing and identifying CAS were of children who had “normal intelligence,” as well as hearing within normal limits, and absence of muscle weakness (or paralysis).

     If you have a child with Down syndrome and suspect CAS, please look for a qualified speech-language pathologist (SLP) who has knowledge and experience in both disorders. Here are a couple of assessments your SLP may administer to determine if your child is also coping with CAS:

•        If your child with Down syndrome has some verbal ability, then your SLP will likely use the Kaufman Speech Praxis Test (KSPT) to assess CAS.

•        Should your child with Down syndrome not be able to imitate words, then CAS is often assessed with pictures such as those in the Kaufman Speech Praxis Treatment Kit (Basic Level) and a CAS characteristic checklist. 

Once you have a firm diagnosis, you’ll want to do all you can to help your child at home.  Here are some ideas:

•        Read predictable books with your child,

•        “Sing” daily routines, using scripts and phrases repeated throughout the day such as, “Hi. How are you? What are you doing?  See you later.”

•        Use picture clues to enhance communication by posting pictures/photos/clipart/PECs of ADLs (activities of daily living) in important areas of your home, such as the kitchen, bathroom, and bedroom. 

Hopefully, these techniques will give your child with CAS and Down syndrome some experiences of success.  For success is what we all seek—parents, children, and therapists alike!



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Bio:

Leslie Lindsay is a former child/adolescent psychiatric R.N. at the Mayo Clinic.  Her daughter, Kate is a bright and creative 1^st grader resolving from childhood apraxia of speech (CAS).  It is because of her that Leslie wrote the first book designed for parents on this complex neurologically-based motor speech disorder.  Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech (Woodbine House, 2012) is as much as labor of love as it is a resource to help others along their apraxia journey.  She lives in Chicagoland with her husband, two daughters, and a basset hound where she writes full-time.  Follow her blog, www.leslie4kids.wordpress.com
“Practical Parenting with a Twist” in which she writes 5x/week on apraxia, education, parenting, and the writer’s life. 

For more information, please look for books written by Libby Kumin, PhD, CCC-SLP Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals, 2nd edition (Woodbine House, 2003) and Helping Children with Down Syndrome Communicate Better: Speech and Language Skills for Ages 6 – 14. (Woodbine House, 2008).

The Writing Process

Blogging is not easy!  There is a distinct parallel between blogging and the 'writing process' that we teach our kids.  You need to have some type of catchy title, an introduction, a middle, and an ending that sums it all up.  You can't use the same words over and over again.  You shouldn't use the same simple sentence patterns; instead, you need to join sentences together to make smooth flowing paragraphs. Vocabulary needs to be specific, but not babyish. You need to make some type of 'point'--sort of a mini-thesis statement and your details need to support your point.   Good blogs take time.  In addition to good writing, you also need to add visuals.  Those of you in blog-land need something cool to look at.  I understand, because I hate to see blogs of just text.  I need pictures, cartoons, graphs, or videos. 

My point here is that I don't have the mental power now to write much or put up cool pictures.  EOGs (end of grade tests)  have gone on for a long time. (Read about that here).  Today, I had three meetings after today's EOG session (4 hours worth of meetings).  I'm not complaining, but there's no creativity going on in my brain.  I really feel sorry for those of you (SLPs) who have 50 to 60 kids on your caseloads.  I don't know how you do it. 

This song is for summer!

Meow! Using Google forms for Cat Sitting!

Cat sitting is a great job for youth---Depending on the cat and owner, the cat usually requires one or two visits a day while the owner is away on vacation. The job consists of various little duties like feeding and watering the cat, litter box cleaning, and maybe petting (depending on the friendliness of the cat).  When the owner returns, the youth is paid a certain amount per day.

Spreadsheet

My good friend went to London for a week, and I felt this was a wonderful opportunity to introduce my mentee, Alana, to the world of pet-sitting.  She was certainly responsible enough, and the only thing she really needed was transportation to the cat job.  That was my contribution.

Pet Sitting Google Form

To keep lines of communication open between my far-off friend and  Alana, I created a Google form for Alana to record what she did for Sparkle (the cat).  (If you would like to learn how to create a Google form, go here.)  The Google form puts all of the cat-sitting data into a Google spreadsheet, which was shared long distance with my friend.  The cat owner checked on Sparkle's well-being and moods from a long distance away!  We used an iPad to record data in the form, but this could also be done with an iPhone or computer.  If you would like to know how to put the Google form onto your iPad screen, go here.

The last thing we did was to take a couple of quick cat videos which Alana and I instantly emailed to the owner using the iPad.  My friend really seemed to love seeing her pet in action.

I guess the point of this blog entry is to
----show first how Google forms and spreadsheets can really help with even the seemingly simplest of jobs (adding structure and communication to make everything more transparent);
---and to show how mentors and teachers (anyone working with youth) can help teach job skills and responsibility.  This experience was great, and Alana and I are on the lookout for more cat-sitting opportunities!   (In Chapel Hill or Carrboro please--this blogging world is huge, so we won't be going to Australia or Minnesota)

Reading the Script

Hi Readers

Did you know that the most important part of my job is to administer the 'End of Grade Tests'? There's regular EOGs, then there is Extend 2 (watered down EOGs), then there is Extend 1 (for kids who really can't do academics), then there is the retests of all three.  It takes at least a month.  I'm in the middle of it now, and it's all an exercise in reading a script. (Do you really need a Masters degree to do this?)  I'm testing a kid in a one-on-one (actually two adults on one if you include the proctor) setting this week, and so far, he's been a compliant participant.  So.....all is good.  Last year, I wrote a haiku about testing.  This year........EOGs drain the life out of creativity and of me.  I can't wait until it's over.

Why I Share Materials Free......

Maybe not the most riveting topic, but I just wanted to put it out there that I give things away online for a reason, actually many reasons, and here they are:

1.  Life is all about sharing.  If someone downloads one of my books and a kid in another state or country learns something from it, then great! 

2.  I actually like making materials, and there is a sense of purpose to what I'm making if I'm feeling the urge to 'blog about something'.

3.  It's a bit of a crime how much materials cost from speech and language companies.

4.  It's also a crime how little money school-based speech pathologists are given to spend.

5.  Sharing is a fabulous way to make new friends and connections.

6.  Not only do my fellow SLPs benefit, but parents also download and use materials.

7.  Other people are more creative than me, and let me know wonderful other ways to use the materials I create.

8.  When I share something new, it also gives me a new therapy tool or book to use with my own students--they love new things, and the teachers I work with love these too!


9. I have a sense of pride in seeing my name or blog mentioned on internet sites.  I also enjoy it when someone I've never met before says they read my blog.

10.  Most of all, I share materials because I love my job, and blogging has given me a new outlet.  The internet is literally a godsend.  Young graduates have no idea what life was like before the internet all came to be!  I share because I'm grateful for it all.

Blogiversary

One year ago today, I started this blog.  Time Flies!


My first entry was about the local meadow.  You can read about it HERE if interested.  The meadow is a lovely place, and so close to my house!  You would never know it's in Chapel Hill.

Believe in what you do---Write a Grant

You may recall that this year, I had the pleasure of supervising a wonderful CF, Ashley Robinson. She possesses the remarkable ability to take a suggestion or idea and literally run with it.  In this case, she had an idea for a grant proposal, wrote it up, submitted it, and got it!  Here's her post!   (She is my very first guest blogger!)

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My wonderful supervisor, Ruth, has been gracious enough to let me guest blog for her. I have appeared on Ruth's blog a few times – I am her clinical fellow (CF) and she has been monitoring and documenting all of the time she has spent directly supervising me – even devising a Google form to keep track of the seemingly countless observation hours. Back in the fall, I applied for a grant on behalf of the Assistive Technology team. This grant was awarded by the Public School Foundation of Chapel Hill Carrboro City Schools. (http://www.publicschoolfoundation.org/ 

    Ruth walked me through the grant process and got me through my first grant application. The grant was titled, “It's Never Too Late: Targeting Literacy in Middle and High School Students with Disabilities.”

Our aim in this grant is to provide middle and high school students with disabilities easy access to age appropriate material at their reading level. The Assistive Technology Team Lead, Jim Tignor (check out his cool tech blog here: http://shinobijimbo.blogspot.com/) found a free app called ScribblePress, which allows students to write and illustrate their own books. There are several ready-made templates, so students who have trouble generating novel text can have more structure. Authors have the opportunity to share their material for others to read.

     Today, I want to take the time to thank the Chapel Hill-Carrboro Public School Foundation for their generous funding towards this grant. With this funding, Jim and I hope to put one iPad loaded with the ScribblePress app, and other apps to support literacy development, in each middle and high school. Exceptional Education teachers will be able to make use of this technology in their classrooms and with many different students. We have so many great educators in this district, that it will be a real pleasure to provide them with technology to support what they are already doing in their classrooms to target literacy.

On behalf of the secondary Exceptional Education teachers and the Assistive Technology team, we would like to send a huge THANK YOU to the Chapel Hill-Carrboro Public School Foundation!  

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 Ruth's Final Note: I realize that most of you don't live in Chapel Hill or work in our school system.  This blog post by Ashley is a great example of seeing what grant opportunities exist, and then writing up a proposal to match what is available.  During our current limited funding times, Ashley and others are doing what they need to do to help their students.  Ashley will be completing her CF year in two days!  Congratulations, Ashley: Job well done!

Ants, ants, and more ants--craft with printable directions

A few days ago, I shared a book I wrote using Boardmaker called "Ants Everywhere".  To go along with this, I also had the kids make a paper ant---a very simple craft with printable directions.  I used Pictello on the iPad to present the directions.  Pictello is a great app--nice because it has text to speech, it's engaging for the kids, and it's very user friendly.  It took about 10 minutes to make the Pictello story---once the steps were made, I  then exported to a pdf file to share with the teacher and with you!
Click here to download the 'Ant craft step-by-step' paper copy.

Notice the Pictello app on the ipad

Child is using Pictello on the iPad to show him what to do

They're taking over! I love the one on the lower left!

I also made a simple communication board to go with this activity.

To download the communication board in Boardmaker, click here.

To download the communication board in pdf, click here



My principal observed this lesson by the way, and found it very entertaining.


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China Boy

Andorra is in Asheville, but when the opportunity came up to submit a couple of photos to the Carrboro Arts Center Annual Photo Contest, we submitted this one that she took during her China trip two years ago.  It was a cool photo---the lighting was great, and the child looked pretty amazing. Surprise, surprise---this actually won first place for color photography!  Andorra couldn't attend the reception, but David and I did. 

wall of photos

reception

people studying the photo

proud mom and dad

another close scrutiny

I took a little video of the judging photographer, Bryce Lankard, discussing Andorra's photo.  The sound quality is not great, but it does get better as the video goes on.  I loved his comments, and now I look at her photo with a new lens.

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Party Pups---review of a preposition game

I've noticed recently that my fellow speech bloggers have been reviewing products provided by companies, and having a lot of fun doing this!  In this time of limited funding, and limited purchase power, I was feeling left out.  Then, I received a wonderful email from 'Carrie' from Super Duper asking ME to pick what I would like to review.  I felt honored!   This game, Party Pups, was provided for me by Super Duper, with a request that I review it. The opinions presented below are entirely my own. 

Since I seem to be working on prepositions a lot recently, the thought of reviewing Party Pups appealed to me.  According to the description, the object of the game is to "collect dog treat tokens for your dog as you practice using prepositions."  Essentially, there are 3 packages of cards with 24 prepositions targeted (each preposition is shown in three different contexts).  The pictures are engaging photos of dogs at various places and positions.  Prepositions include 'above', 'across', 'after', 'around', 'at', 'on', 'through'......this list is long and includes most of the common and some more advanced prepositions.

I wrote out the sentence to help a student add the verb.

Counting dog treats

Each child chooses a game board, the adult chooses a set of cards, and everyone takes turns picking a card and using the given preposition in a sentence to describe the picture.  After each turn, the player pushes the button to activate the electronic spinner to collect the corresponding number of dog treat tokens.

Now it's time for my first review! 

Positives first---

1.  The kids loved this game!  I played it with 4 different groups of children ranging from second grade to 5th grade---all developmentally delayed or autistic, with three of the children also learning English as a second language. The pictures were very attractive, clear, and entertaining.  The rules were simple, and at the end of every turn, pushing the beeping spinner and collecting bones was extremely reinforcing.  The game held their attention, rules were learned quickly, and they talked about other things too, such as 'bunk beds'  pictured here.  They also really got into counting the dog treats and deciding who had the 'most', 'least', and 'same' amounts. 

2.  The game can be adapted a bit.  The game need not be played with all 24 preposition cards.  For the kids with younger language skills, only very basic concepts could be targeted.  More advanced concepts or prepositions can be saved for later.

3. You can also use the cards for a comparison activity.  For example, the word 'above' is shown three different ways.  For the more advanced children, see if they can explain what is the same in the cards and what is different.

4.  There is a little booklet with some extra game ideas to try, along with fun fact pages about each breed of dog pictured on the cards.  We didn't have time to delve into this today. 


 Thoughts to keep in mind

1.  The SLP using this game needs to know that the goal for this game is not to follow directions using prepositions or receptively identify them, but to label a picture using a given preposition in a grammatical phrase or sentence.  As you can see in the pictures above, the target word is shown below each picture, so if the child can read, all the thinking is done for deciding the appropriate preposition.  I found this game was really good for working on using correct sentence structure and syntax after given a word.  (I hope my explanation here makes sense.)

2.  Most of the vocabulary  presented in the pictures was age appropriate; however, a few of the pictures had unfamiliar items. (e.g. 'dog groomer', 'Eiffel Tower').  There were a couple of prepositions ('before' and 'after') that were too difficult and had more to do with the concept of time rather than space.  I just pulled out those cards for now, since those needed direct teaching using other materials.  

3.  Sometimes manufactured games come with data collection sheets but this game had none.  A data sheet would be easy for anyone like me to make, but a pre-made one could easily be included with the game or available for download from the Super Duper website.  In this time of RtI, accountability, and evidence-based practice, data is the driving force behind progress monitoring.  

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So that's my review.  If you are interested in purchasing this, go here.  As I wrote earlier, my kids truly loved this game. I think their responses were the most enthusiastic I've seen for a manufactured language game.
In order to really use it effectively,  I do need to type up a simple pre- and post-data collection sheet, and I need to keep exact goals in mind as I play the game with students, taking data and adapting accordingly. I feel that this game would definitely be worth purchasing.    

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Standing on the Side of Love

The state of North Carolina has just disappointed me. 
A friend wrote:

"This is a sad night for our state. I feel sure that in time we will look back and realize, as happened with Jim Crow laws, that all Americans deserve to live their lives with equal dignity and equality."

Amen 

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Baby A graduated!

When Vicki and Andorra were born, we were not expecting them to be girls, so no names were handy.  For a day, they were affectionately known as Baby A and Baby B.   Baby A (now known as Andorra) graduated today from UNC Asheville.
      Today was wonderful---a nice ending to her college years. 

Baby A--diploma in hand!

the motley crew

Ants Everywhere! An UNDER and ON printable book

My house has ants and usually in July, they start to gang up and invade on, under, beside, in, and through things.  It becomes a daily battle and I usually win, glad to say!  When I ask kids about their homes, they have moms that battle the critters too!   I'm sure many of the children here will identify with this book.

screenshot of book on boardmaker

Ants on the sandwich!

I've included a screenshot above.  The title page is at the bottom left, and the last page of the book is the picture of the anteater.  The bottom right are the icons and sentence strip. Concepts targeted here are ON and UNDER.   Enjoy the book, and I hope your houses don't have ants everywhere!

Click here for a Boardmaker version of Ants Everywhere!

Click here for a pdf version of Ants Everywhere!