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School Age Matters E-Newsletter
September 2016
“Do I Buy the (Fill in the Blank) Program?”
Evaluating At Home Speech Programs/Products
Blog by Jen Bekins
Today I had three separate parents reach out for my opinion about a specific program making the rounds on social media discussion threads. I’m not going to name the program because I honestly haven’t used it. I do have concerns after looking into it because the program follows a fairly predictable pattern: inflated claims, weak research base, and “works for all children” mantra. It’s not a new story.
I’ve been there professionally:
Should I make this product a part of my therapy toolkit?
I’ve been there personally:
Will this help my child? I’ll do anything to help my child.
How are families supposed to weed through what works and doesn’t work? The very first thing to do is take time to look over the program with a critical eye. This isn’t personal, it’s fair. Do not get pressured by companies, therapists, or other parents to buy a product.
Ask questions:
1. Is it too good to be true? One technique cannot possibly be good for all children or all disorders. It’s more likely that the treatment is not as effective as claimed. I illustrated this once when presenting by displaying two pictures of a little girl with DS side-by-side (with parent permission). The first picture her tongue protrudes. The second picture her tongue is in her mouth, lips closed together. The technique? Nothing. Just an instant later with the same camera. You can’t believe everything you see.
1. .
2. Has it caught a lot of attention online? View this as: proceed with caution. Just because someone claims a treatment works online, in the popular press (like a parenting magazine), or TV show doesn’t mean it’s going to work for your child. Remember several of years ago when a child with Autism was shown using an iPad with a specific type of app? Do you know how many families came in to our clinic requesting that app? It’s a great app. Unfortunately, it’s not usually the best fit for children with DS.
3. What’s the research? Case studies and outdated articles (nothing completed in the last 5-10 years supporting effectiveness) are reasons to hold off on a purchase. Remember – Evidence comes from peer-reviewed journals where researchers discuss their studies. Self-published books, articles, or trade magazines (Advance) should not included as evidence a product works.
4. Does the website or advertisement use pseudo-scientific jargon AKA words meant to sound scientific. Be aware that most treatments/products/programs won’t sound absurd. They are well marketed and use terms to make customers (that’s what you are) believe claims. Be wary of the following terms as it relates to specific products or programs: anecdotal evidence (“In my own practice…, my child starting speaking after using X”), expert opinion, authority, guru, testimonial, etc. While these terms can be convincing at first, they should lead you to…more questions. Don’t despair AND don’t end your search here!
5. What happens if it doesn’t work? Unfortunately I’ve seen companies (or other parents sold on the product) claim that if your child doesn’t make progress it’s because you need to use it longer (spend more money) or it wasn’t implemented correctly (you did the program wrong). I find this type of blaming to do nothing but cause more guilt and shift focus from the real possibility – the program wasn’t effective for your child.
I know this is a lot to digest. In 2013 I made a worksheet for parents to use as they figure out which programs are worth their investment of time and money. You can download it here: worksheet.
Ultimately, the decision to use a specific treatment is up to you. Even if you find out it is beneficial for children with DS, that doesn’t mean you have to use it. Keep in mind that any program has to fit within the boundaries of your family in terms of:
Cost – Do not, I repeat, do not break the bank to purchase a product(s)
Duration – How long the program is needed?
Intensity – How frequently is the product used?
Reality – Are you ready for the commitment now? What barriers exist that may prevent you from following through with the program? If not now, could you manage in 6 months?
Whatever you do, do not buy into a product or program out of guilt or desperation. It’s not worth it. Weighing your options wisely will give you peace of mind now and in the future.
References & Helpful Links
“It’s Not Humanly Possible to Do Everything”: Perspectives on Intervention Decision-Making Processes of Parents of Children with Autism Spectrum Disorders
Controversial Practices in Child Speech Sound Disorders
10 Questions to Distinguish Real Science from Fake Science
Lof, G.L., & Camarata, S. (Nov., 2011). (Adobe Download) Clinical science: Distinguishing fads, myths, and evidence. Seminar presented at the National Convention of the American Speech-Language-Hearing Association, San Diego, CA.
Empowerment Classes
Employment Series (ages 16 & up)
Saturdays | October 29 - November 19 10 am - 11:30 am DSAGC Hatton Foundation Community Room
$20 fee for 4 weeks
By participating in Cheerleading classes, participants will learn the basics of cheerleading! Former Ben-Gal, Debbie Schroeder, will teach chants, cheers, a dance routine, sideline etiquette and more. Each participant will receive their own t-shirt, pom-poms and have the opportunity to perform at several high school basketball games during halftime.
register here
Cheerleading (ages 6-18)
Practices | 10/26, 11/2, and 11/9 6:30-7:15 Performance dates are TBD DSAGC Hatton Foundation Community Room
$20 participant fee
The Employment Series is a 4-week program that provides the tools necessary to obtain and strengthen skills for finding meaningful employment. One will learn about resumes, determining and utilizing their character strengths, professionalism and presenting yourself, and interviewing skills. Each participant will take part in mock interviews in the final week of the series. register here
CPR Certification Class
Sunday | November 13
1:30 - 4:30 PM
DSAGC Hatton Foundation Community Room
$20 per person (pay by cash or check at class)
This course will be video based, instructor led, and feature group interaction and
hands-on coaching and feedback from American Heart Association Instructor,
Kevin Uhl. Skills are taught with the AHA’s research-proven practice-while-
watching technique that allows students to practice skills as the video guides
them. This course is for anyone interested in learning CPR and AED with limited
or no medical training, and/or anyone who needs a course completion card in
CPR and AED use to meet job, regulatory, or other requirements.
Being that is Instructor lead, participants are encouraged to ask any questions
they may have, especially about any special concerns. Kevin will address
anatomical concerns unique to people with Down syndrome.
Questions? Contact Kathleen Ferrara at [email protected].
Register Today!
Class is for everyone!
parents, professionals, caregivers, friends, babysitters,
adults with Down syndrome, etc.
I.E.Ps and Support
Invite me to your school!
Peer Presentations. I can visit your child’s
classroom to discuss what Down syndrome is and how
people with Down syndrome are more LIKE everyone
else than they are different. Depending on age, I can
complete a variety of activities including reading to
young children, having self-advocates share their story
and have a Q&A session with older students.
I.E.P. Meetings. Bringing support along to an IEP
meeting is an important success factor. Whether it is a
spouse, teacher, or myself, support can help take
notes during the meeting and help reduce any anxiety.
I would love to be that support system for you at your
next meeting!
Teen Club
Cincinnati Children’s
Growing Through Knowing
Cincinnati Children’s
Growing Through Knowing
ABC Pediatric Bike Clinic
WHEN BEHAVIOR IS A CHALLENGE
November 4, 2016- 10:00AM-3:00PM
This day-long workshop is for family members who want strategies for working with their child with ASD/DD, includ-
ing a focus on positive ways of dealing with behaviors.
COST$0
Instructors: Jennifer Smith, PsyD, Psychologist-TKOC, & Outreach Coordinator
Janet Seide, BS Family Outreach Associate
Where: Cincinnati Children’s Hospital, Liberty Campus, 7777 Yankee Road, Liberty Township, Ohio 45044
To Register Contact: Jennifer Gastright at [email protected] or 513-636-2742
Funded in part by Hamilton County DDS
All classes are held on the 5th
floor of the Medical Office Building @ 3430 Burnet Ave. Cincinnati, OH 45229
A short lunch break is provided during all-day classes; onsite café available.
There is no food served during evening classes. Attendees are invited to bring food/snack for themselves & are
welcome to eat during classes.
Classes are for adults-only including parents, professionals, and others caring for or working with children and
adolescents with ASD or other related developmental disabilities. Classes are free of charge unless
otherwise specified.
For all classes you must register to attend: Jennifer Gastright @ 513/636.2742;
[email protected] or [email protected]
DDBP Classes
Behavior Workshop
DDBP Classes Continued
Wednesday, October 12
5:30-7:30pm
Cost $0
FEEDING PROBLEMS IN
INDIVIDUALS WITH
ASD/DD
This 2-hour session will address the following topics: com-
mon feeding problems in children with ASD/DD, practical tips
to address feeding problems, and evidence-based behavioral
intervention procedures used to treat feeding problems.
Instructor: Jennifer Smith, PsyD, Psychologist-TKOC
& Outreach Coordinator
Monday, October 17
5:00-7:00 pm
COST $0
Monday, November 7
5:00-7:00 pm
COST $0
*Participants must attend
both sessions
MORE CLASSES
ON BACK OF PAGE
DEVELOPING A FUNCTIONAL
COMMUNICATION SYSTEM FOR
CHILDREN WITH ASD/DD
The first 2-hour session will focus on developing a functional
communication system with pictures for children with ASD/
DD who are non-verbal or have limited verbal language skills.
We will discuss initiation, concrete exchange of pictures sym-
bols, & discrimination training of these pictures. We will also
teach how to use sentence structure with pictures.
The second 2-hour session will focus on children using
speech generating devices. We will discuss where to start
with your child using the speech generating device, as well as
how to incorporate use of the device across all settings in-
cluding home, school, and the community. We will review
appropriate goals for your child and how to implement these
goals across all settings.
Instructors: Jennifer Budde, SLP-DDBP
Monday, November 14
9:00-11:00am
Cost $0
WHAT THE HECK DO I
DO NEXT?
NEXT STEPS AFTER THE
DIAGNOSIS
This two-hour session is for parents/caregivers after their
loved one has received a diagnosis from DDBP. This session
will address the following: What are the available services
through DDBP? How to access available resources in the com-
munity after the diagnosis. This class is for families with chil-
dren ages 2-14.
Instructors: Abbey Walter, LISW-S DDBP-TKOC Social Worker
Janet Seide, BS Family Outreach Associate
Toilet Training Class
We also offer...
Birth Year Groups
2011-2016
Meet families with children born the
same year as your little one!
COMMUNITY GROUPS COORDINATOR | Amy Iten • 513.761.5400 • [email protected]
Area Specific Groups
Butler/Warren
Serving families in Butler and Warren counties
B.A.C.H.
Serving families in Brown, Adams, Clinton, Highland and surrounding
counties
Eastside
Serving families in the Cincinnati Eastside area and Downtown Cincinnati
K.I.D.S.
“Kentuckians Interested in Down Syndrome” serves families in Northern
Kentucky
Westside
Serving families in the Cincinnati Westside area and Downtown Cincinnati
Special Interest Groups
African American Family Network
Serving families by providing information, support and networking
D.A.D.S.
Discussing and networking on the aspects of being the father of a child
with Down syndrome
Hispanic Family Group
Social and educational opportunities for Spanish-speaking families
Please contact Marina at 513.490.2834
Teen Club
Serving teens and parents through social opportunities and networking
Grandparents Facebook Group
Get connected with other grandparents and share great stories about your
grandchildren
A Community Group is designed to create opportunities for families that have children with Down syndrome to network
and share common interests, concerns, challenges and information. They do this through community events,
informational meetings and Facebook groups. All of our community groups are led by service-minded volunteers with
the help of our Community Groups Coordinator.
Community Groups
September Calendar
Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1 2 3
BUDDY WALK
T-SHIRT PICK
UP
4
B.A.C.H. Sum-
mer Swim
Party
5
BUDDY WALK
T-SHIRT PICK
UP
6
BUDDY WALK
T-SHIRT PICK
UP
Butler/Warren -
Ladies Night
Out
7
BUDDY WALK
T-SHIRT PICK
UP
8
BUDDY WALK
T-SHIRT PICK
UP
9
10
15th Anniver-
sary Buddy
Walk
11 12 13 14 15 16 17
18 19 20
Eastside -
Movie Group
Meet Up
21 22 23 24
25
TEEN CLUB -
Foot Golf
26 27 28
Westside -
Moms' Night
Out
29 30
Eastside - Ok-toberfest Picnic
October Calendar
Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1
2 3 4
Butler/Warren -
Ladies Night
Out
5 6 7
Westside -
Family Event
8
Eastside - Fall
on the Farm
9 10 11
D.A.D.S. Meet-
ing
12 13 14
Eastside - So-
cial Club Mixer
15
Family Re-
source Confer-
ence
16
Butler/Warren -
Fall Family Meet
Up
17 18 19 20
Westside -
Moms' Night
Out
21 22
Buddy Up
Tennis (ages 5
& up)
23
TEEN CLUB -
Parent Panel
24 25 26 27
Early Matters
Play Date (ages
0 - 5)
28 29
30
TEEN CLUB -
Halloween Event
31
Buddy Up Tennis
(ages 5 & up)
K.I.D.S - Pumpkin
Patch