CDSPG Extra - April 2015 - Chesapeake Down Syndrome Parent

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The Chesapeake Down Syndrome Parent Group Newsletter
April 2015
Genetic Counselor Meeting... IQ Testing... Open Board Meeting... Adult/Teen
Mentoring... Amazon Smile... One Question... Calendar... Volunteer...
CDSPG Presents DS Diagnosis Dos and Don'ts to Johns Hopkins
Genetic Counselors
By Anna Fulbright, CDSPG First Call Chair, Board Member
On Wednesday April 8 I had the pleasure of speaking to the genetic counselors at Johns
Hopkins Hospital about best practices for delivering a Down syndrome diagnosis and
about CDSPG's First Call program. The recommendations for delivering a diagnosis
came from papers by Dr. Brian Skotko and colleagues that review studies where
parents reported on what was most and least helpful during their diagnosis experience.
Some of these recommendations include using respectful and non-judgmental
language, and delivering the diagnosis during a scheduled phone call for prenatal
diagnoses and in a private room with both parents present for a postnatal diagnosis.
Thanks to several members of CDSPG, I was able to share some personal examples of
how providers had or had not followed these recommendations.
These studies also talked about the importance of providing parents with up-to-date,
accurate, and objective information about Down syndrome. This view is also shared by
the Maryland State legislature who in 2014 passed the Pro-Information law that
requires that patients receive this information. I shared some of the resources that are
most recommended by the Department of Health and Mental Hygiene such as the
Lettercase book, Understanding a Down Syndrome Diagnosis, and Down Syndrome
Pregnancy's book, From Diagnosis to Delivery: A Pregnant Mother's Guide to Down
Finally, the studies discussed how parents with a prenatal or birth diagnosis often
desired to be connected with other families who have a child with Down syndrome.
First Call was designed to meet this need, and I discussed how medical providers could
refer their patients to our program. The genetic counselors were very receptive and
interested in the information I shared. We hope to have similar presentations at more
hospitals throughout the Baltimore area.
If you are interested in being part of the First Call team, please contact me at
[email protected]
IQ Determines Category, Track Contentious In Community
Next Seminars Discuss First IEPs, SpEd Advocacy
About 20 parents attended the IQ Testing
and Results seminar on Thur., March 26,
presented by Ms. Aimee Kandelman,
Howard County school psychologist. IQ
assessments are one of the criteria IEP
teams use to determine a student's
category of disability, as required by the federal government. But whether it is
appropriate for teams to use scores to determine a student's educational track (diploma
or certificate) continues to be a contentious issue among our community.
Here are some key points from the seminar:
Parents can ask why one test is chosen over another. There are many IQ tests
designed for different age groups, including tests for children who are non- or
less verbal.
The results should be used in conjunction with classroom qualitative information
and behavioral observations.
Focus on the relative strength of the results instead of the absolute strength or the
total score.
IQ scores tend to stay consistent but with appropriate intervention, adaptive
skills can change.
Ask the psychologist to highlight items that could be helpful for the team (weak
short-term memories, need for repetition, etc.) to generate IEP goals.
Upcoming CDSPG seminars
The First IEP: Transitioning from IFSP to IEP
Thur., May 28, 6:30 - 9 pm
Central Presbyterian Church, Towson, MD
Advocacy 101
A half-day seminar to discuss preparation for IEP meetings, Universal Design for
Learning, and developing SMART IEP goals and a vision statement for your child.
If you have any ideas or suggestions for future education and training seminars or
would like to join our advisory committee, e-mail Yvonne Cotto.
Survey, Focus Group Findings to be Presented Next Month
Open Board Meeting on May 4 in Towson
Next month, CDSPG will host an open board meeting,
giving all of our stakeholders an opportunity to listen
and give feedback on important issues affecting our
Leading the meeting's presentations will be a
discussion of CDSPG's new strategic plan and the
findings from our stakeholder survey and focus
group. Board members and committee chairs also will
present on financial and membership affairs,
fundraising events, communication strategies,
education & training, medical outreach/first call, and
other special programs.
The meeting will take place Monday, May 4, from 7:30 - 9 p.m., at the
Trinity Episcopal Church in Towson, MD.
Please RSVP to let us know how many people to expect. If you have any questions, email [email protected]
Mentoring Program Builds Confidence, Independence,
Cultural Awareness
Adults and Teens with DS Pair for New and Improved Brightside Project
The BrightSide Project is having an
informational meeting to bring together families
who are interested in participating in this new and
improved mentoring program to learn more and shape
future events.
The Brightside Project is a mentoring program that
pairs adults (age 19 and older) with Down syndrome
with teens (age 13-18) with Down syndrome to develop a mentoring relationship and
participate in fun, educational and inspiring activities. BrightSide helps build selfconfidence, team building, leadership and social skills to help individuals with Down
syndrome become more independent and culturally aware. The program will be run by
licensed social workers and supported by a team of volunteers.
E-mail [email protected] to learn more about the program and the informational
Amazon Smile
One Question...
The next time you shop Amazon, you can
help support CDSPG. When you shop
through AmazonSmile, select
Chesapeake Down Syndrome Parent
Group as the benefiting charity. Amazon
will donate to CDSPG 0.5% of the price
of your eligible AmazonSmile purchases.
Answer this one question to help CDSPG
communicate with you better.
Thank you for your support!
Family Social at the Bounce House
Friday, April 17, 2015
6 - 8:30 p.m.
Pump it Up | Elkridge, MD
More information and RSVP
Playground Pizza Party
Saturday, May 2, 2015
Rockfield Park, Bel Air, MD
More information and RSVP
Open Board Meeting
Monday, May 4, 2015
7:30 - 9 p.m.
Effective communication is so critical to
a successful organization. CDSPG wants
to get information and support out to its
families in the best ways possible. How
would you prefer to receive
communications from CDSPG?
Trinity Episcopal Church, Towson, MD
More information and RSVP
Seminar: Your First IEP: Transitioning from IFSP to IEP
Thursday, May 28, 2015
6:30 - 9 p.m.
Central Presbyterian Church, Towson, MD
CDSPG Golf Classic
Monday, August 3, 2015
10 a.m. - 7 p.m.
Hunt Valley Golf Club, Phoenix, MD
More information and Register
See full event listing online. Check the CDSPG Web site regularly for event updates and
registration information. We also post events on our Facebook page.
With a Little Help from Our Friends, We Can Build a Better
CDSPG - Get Involved!
How can CDSPG better serve you and your
family? Your needs and great ideas can be
realized, but first we want a little help from
Join one of our working or advisory committees or
even the board of directors, and you can have a direct
impact on creating, expanding and running programs
that support families to help individuals with Down syndrome reach their fullest
potential in the community.
Our network of support will grow stronger and fuller with your knowledge, expertise,
time and willingness to serve. Join us!
If you are interested in joining the board or any of our committees or have questions,
please contact Courtney Dunevant at [email protected]
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