What about Bob? XXYY Project Information

Clinic Grants
The XXYY Project has a limited amount of funds
available for families who might not otherwise be
able to go to the eXtraordinarY Kids Clinic in
Denver. This grant can help cover expenses not
covered by your insurance such as your
deductable or travel expenses.
The most current clinic grant application is
always available in the XXYY Library (http://
xxyy.batthish.org) by clicking on the Clinic
Grant link in the Hot Links section.
It is important that you fill out the grant
application in its entirety. If you need assistance
completing the grant application, please contact
Melanie, the Family Support Manager
(inquiry@xxyysyndrome.org).
The grant application must be submitted prior to
a board meeting prior to your clinic appointment .
The date of all XXYY Project board meetings can
found in the Library calendar.
XXYY Project Information
XXYY Project Website
http://xxyysyndrome.org
XXYY Library
http://xxyy.batthish.org
XXYY Facebook Page
http://www.facebook.com/xxyyproject
XXYY Twitter Page
http://www.twitter.com/xxyyproject
XXYY Family Support Manager Melanie Meyers
(215)394-5942 (8am-9pm, EST)
inquiry@xxyysyndrome.org
XXYY Project inquiries Linda Prudhomme, Executive Director
(310)910-3326
director@xxyysyndrome.org
eXtraordinarY Kids Clinic appointments
(including setting up phone consults with
Dr. Tartaglia) Susan Howell
(720)777-8361
Susan.howell@childrenscolorado.org
Volunteers Needed!
If you think you might be interested in volunteering for the XXYY Project or serving on
the XXYY Project’s advisory board, please
send an email to
volunteer@xxyysyndrome.org
for more information.
Purposeful, Productive Lives
For Males with XXYY Syndrome
PO Box 2172
Littleton, CO 80161
What is 48 XXYY Syndrome?
48 XXYY syndrome is a sex
chromosome variation that affects
one in every 17,000 boys who are
born.
Males with XXYY have two x and
two y sex chromosomes, instead
of one each. XXYY is often
mistaken for other syndromes.
The most common symptoms
and characteristics would be:









Developmental delays
Speech impairment
Tall, considering family
history
Behavior outbursts & mood
swings
Learning disabilities
Intellectual impairment
ADHD symptoms
Anxiety disorder / OCD or
other mental health issues
Autism, autism spectrum,









PDD-NOS
Scoliosis
Clinodactyly (Curved-in
pinky fingers)
Low muscle tone
Flat feet
Infertility
Delayed sexual
development / puberty
Low or no testosterone
Significant Dental problems
Leg ulcers
(Not all males with XXYY experience all of
these symptoms)
Diagnosing XXYY requires a
genetic test called a karyotype.
The test is done by drawing
blood and an analysis is done
on the cells of the blood to
determine the boy's
chromosomal make-up.
Clip and save!
Cookbooks Still Available
Our cookbook fundraiser has been a great success. However,
we still have over 130 books ready to find a new home! Visit
our website to purchase yours:
http://xxyysyndrome.org/shop.html
(Click on Donate > Shop for XXYY.)
Purposeful, Productive Lives
For Males with XXYY Syndrome
PO Box 2172
Littleton, CO 80161
Newslett er o f the XXYY Pr o ject
A Pr oject o f the Color ado
Nonpr ofit Develo pme nt Cent er
A newsletter for donors, families and friends of the XXYY Project
What about Bob?
Fall 2011
Janet Fuller
Many of you are probably familiar with this Bill Murray movie. My son Robert could easily have been the impetus for the
character. An xxyy guy with a heart of gold and a unique outlook on life, he starts each day with a smile, and sets out to make
new friends. Of course his adventures are occasionally disasters that he needs rescuing from, but it never deters him from
setting out again.
His sense of wonder is always with him and he can be fascinated with anything from insects, cloud formations, a pebble, or an
antique car. His attention span seems minute, yet he can spend hours lost on the internet, or contemplating a museum exhibit.
He is also happy to lecture without pause in his foghorn voice about any
subject that interests him, much to the dismay of many a captive
audience.
Robert reached a milestone birthday this summer, age 25, a quarter of a
century. His father and I had discussed many times what needed to be
done to help Robert with his life’s journey. His younger brother had
already left home for college over 3000 miles away, and I felt it was time
for our other fledgling to try his own wings and set off on his own.
Knowing that Robert’s situation was quite different from his sibling’s, the
challenge was a bit more complicated.
My first go-to person was Robert’s regional center case worker. Living in
California, we are fortunate to have government agencies known as
regional centers. Once a child has qualified for regional center
Robert with his brother Justin, and mom Janet
assistance, one has access to a whole battalion of qualified experts who
know what is available, what is required by law, and how to negotiate to get the services our children need. The current state
budget crisis has affected this vital service, but the people who work there, while dealing with impossible caseloads, are
dedicated to their consumers.
I first approached Robert’s regional center caseworker about four years ago with the question “What about Bob?” At that time,
Robert was just completing his high school requirements, and after three different attempts and his devoted private high school
staff, he managed to just squeak through the state exit exam so that he could get an actual diploma instead of a certificate of
completion. This was a monumental task, as at that time there were no accommodations being made for disabilities. After
completing that hurdle I paused for breath, and then hit my eternal question so “What about Bob?”
Robert, like so many of our xxyy young men, has a great disparity in his abilities. He reads at the college level, can write like a
younger high school student, and yet often cannot remember the numbers to his home address. Money and mathematics are
his weakest areas, which is different from many other xxyy guys, who generally are good at math but weaker in verbal and
language skills. If Robert is stressed, he often cannot function anywhere near his normal ability. (Of course he easily managed to
learn how to use both a credit card and a debit card, and of course he also managed to spend $300 at the mall one day, so the
credit card/debit card experiment is currently on hiatus.)
I set out with our caseworker and his high school vice principal to explore all of the options open to someone like Robert. After
searching and visiting 9 different programs, the three of us found a wonderful opportunity through a private program that
cooperated with our local community college and their department of disabilities. Through the collaboration of all, Robert has
had a great success as a community college student. It has not always been easy, his class load is light, and he has had to drop
a few courses that were beyond his ability, but he has formed his own cadre of caring professors who look out for him and help
him navigate his academic way.
(continued inside)
www.xxyysyndrome.org · (303) 910-3326
Advisory Board
Violaine Batthish
Technology Advisor
web@xxyysyndrome.org
Janet Fuller
Chair
chair@xxyysyndrome.org
Lynda Hall
XXYY Parent Network Moderator
moderator@xxyysyndrome.org
Maureen Miller
Community Director
community.director@xxyysyndrome.org
Tammy Mosier
Volunteer Coordinator
volunteer@xxyysyndrome.org
Larry Rakowski
Clinic Liaison
clinic.liaison@xxyysyndrome.org
John Wilcox
Treasurer
treasurer@xxyysyndrome.org
Staff
2011 Symposium Sailing Towards Success,
Boston, MA
In July this year, another Symposium
was held, and twenty families attended
a fun and information packed weekend
filled with camaraderie and friendships
and experiences to last a lifetime.
There were speaker sessions and a
parents vs guys and siblings softball
game which resulted in a 10-9 win for
the guys and siblings. And of course
many pictures, tears and the awards
ceremony!
Award
Recipient
Walking 1st steps
Harry Allison
Greatest Golfer
Dylan Braun
Bravery
Kaden Chamberlain
Attendee of every symposium
Jon Coy
Greatest Flagman of Stock Cars
Thomas D’Hondt
Entrepreneurial Spirit
Kevin Flynn
Hardworking Volunteer
Alec Hall
Best organized and Most Fantastic
Alex Hampton
Super Speech Star
Zakkery Hann
Oldest guy at the symposium
Michael Hines
Linda Prudhomme
Executive Director
director@xxyysyndrome.org
Kindness
Brian Goonan
A True Friend
Brad McEwan
(303) 910-3326
Most Improved Athlete
Aidan Meyers
Key Volunteers
Most polite
Devon Niforos
Melanie Meyers
Family Support Manager
inquiry@xxyysyndrome.org
(215) 394-5942
Sharing the Gift of Science
Jason Rakowski
Excellent Cooking Skills
Johannes Renstrom
Best Younger Brother
Brandon Romandetti
Mr. Sociable
Jason Stankiewicz
Most Outgoing
Zackary Udall
Most Improved Public Speaker
Jacques Wiatrowski
Val Kellogg
Education Support
education@xxyysyndrome.org
Ashi Daftary, M.D.
Janeen Daftary, R.N.
Medical Contacts
medical@xxyysyndrome.org
Charlene Welcome
Roadmap to Services Committee
Walk a Mile in My Shoes Chair
walkamile@xxyysyndrome.org
Medical Director
Nicole Tartaglia, M.D.
2011 3rd Annual
Walk a Mile in My Shoes
Saturday November 26th is upon us, and so is
the 3rd annual Walk a Mile in My Shoes.
Why only a mile? For guys with XXYY Syndrome, a mile is not as easy as for the rest of
us, due to low muscle tone, skeletal problems
and other issues. So we walk, and help raise
awareness of this rare disorder!
Sponsor a team for the walk at:
http://xxyysyndrome.org/walk.html
Changes to the XXYY Project Advisory Board
In August, the XXYY Project Advisory Board welcomed its new members, Tammy Mosier (Volunteer Coordinator), Larry Rakowski (Clinic Liaison),
John Wilcox (Treasurer) and Janet Fuller (Chair). It is exciting to have new members on the board and new ideas! The board also bids goodbye to
esteemed member Brian Meyers, thanking him for all his hard work and dedication. Here are a few words from Brian:
Hello Families and Friends,
After four wonderful years serving on the XXYY Advisory Board, I have decided to step down and assist the group in a different capacity.
I would like to thank all of my friends on the board, and the families of the group for the opportunity to serve.
To the board members, It has been a great experience, and one that I am truly thankful to have been a part of. Your passion and
commitment to our guys is relentless. Without your hard work and dedication, this organization would not be where it is today. I
cannot thank you all enough for striving to make the world a better place for my Aidan! I love you all!
To the families and friends of the group, please get involved if you have not yet done so! By serving this group you become a voice
for our guys, and will find it personally rewarding. Let’s give our guys the best possible chance in life that we can! Please support!
Sincerely,
Brian Meyers
Dad to Aidan, age 8 XXYY
What about Bob? (continued)
The private program provides transportation, makes sure Robert is where he is supposed to be, and tries to head off any obstacles
that might get in his way. The college’s department of disabilities helps him get priority registration, provides tutors, sets up accommodations for tests, and will run interference with a professor if they feel the student’s needs are not being met.
Our only near disaster involved having his backpack stolen two years ago, which generated an epic meltdown. Some of you know
how our xxyy guys can produce these on occasion. Fortunately, his private mentor was able to snap him out of it before the campus
police were called. Since Robert is now on first name basis with all campus security and maintenance staff due to his innate curiosity (What are you doing, why, etc), I no longer worry that incidents will spiral out of control. Robert is majoring in Geology, and also
works in the Geology Lab four hours a week as an assistant. He will probably never complete his degree because of the advanced
mathematics required for a science major, but he is learning and loves it.
Which brings me again to “What about Bob?” Several years ago Robert and I attended a joint workshop in Los Angeles with the
Klinefelter group and XXYY. I spoke with Renee and several other parents about looking into setting up a group home for our young
men. I was quite intrigued, but ultimately decided that I could not have him move away to Colorado far from his support group of
teachers, doctors, dentist, and family. The seed of independence was planted, though, and I began to explore alternate living situations for him. Robert was determined to have none of it. He was very comfortable at home in his own room, buried in rocks collected
and papers amassed. I felt however, that he was stagnating, and needed to get out away from me to mature and become more selfsufficient.
His father and I first talked about his brother going away to school, and how young men grow up and move away from home when
they are ready. Robert listened carefully, and immediately focused on “when they are ready”. He then informed us that he was not
ready. I retreated and decided to give him some time to think about the idea. As my marriage was disintegrating, Robert used this
as an excuse to postpone his departure. His mom, he was sure, could not cope with living by herself. I became even more determined to launch this reluctant flyer.
At the beginning of this summer, armed with a list of semi-independent living arrangements provided by our regional center caseworker, I set out with my younger son to explore the options available. I saw a small apartment complex managed by a wonderful
family. It was set up like a dorm, with roommates and communal dining. That was a possibility. We saw another that looked great,
until the manager reluctantly told us that they were experiencing a bed bug epidemic and had been unable to exterminate them despite repeated attempts. That took them off the list. I happened to mention our quest to his private mentor group. He then informed
me that their parent company had several homes and asked if we would be interested in talking to someone there. In August,
Robert’s father, brother, and I went with Robert together to see a home located about five miles from us in a neighboring town. It
was large, spacious, had a pool, and the potential client would have his own bedroom and bathroom. The caretaker was a high
school teacher and counselor. The teacher, being recently single, had decided to fill his empty home with three young special needs
men. I knew it was perfect for Robert. The owner even had a dog, which would help Robert with missing our family pets.
Robert balked and stalled, but ultimately he moved in the day after Labor Day. “What about Bob?” continues, but it is new chapter,
as he learns to get himself up and ready in the morning, helps with chores at the house, does his own laundry, watches for his ride to
school, and comes home to visit for several hours weekly. I have already seen some major growth in maturity and look forward to
seeing my dear young man continue forward on his own path in life.
www.xxyysyndrome.org · (303) 910-3326