Thursday, May 31, 2012

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. 
     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!

Leslie Lindsay is a former child/adolescent psychiatric R.N. at the Mayo Clinic.  Her daughter, Kate is a bright and creative 1st 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,
“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).

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