duplication cares · newsletter. if you were anything like our family, it was so nice to finally...
TRANSCRIPT
ty to thank Tricia and Mark Scott
for all of their hard work and ef-
forts on behalf of our children!
Tricia has spent countless hours on
behalf of Duplication Cares and we
are grateful for her time and dedi-
cation! While Tricia will still be an
active participant in Duplication
Cares, we are now looking for
additional families who want to be
involved.
Please send me an e-mail if you
have a desire to be involved with
the board, help with the newslet-
ter, be a regional contact, or if you
have a skill set to share with the
organization.
It is a pleasure to serve you and to
get to know each of you better.
Please let us know how we can
better support you and your family.
Best Wishes, Jennie Dopp
Welcome to the 2013 edition of
the Duplication Cares Newslet-
ter. I apologize for the delay. I
had hoped to include an article
regarding managing difficult be-
haviors in this issue. However,
because of our Child Psycholo-
gist’s and Behaviorist’s schedule,
he has been unable to send me
the information I wanted to
share with all of you. He promis-
es to send it to me and when he
does, I will send out the infor-
mation to all of you.
Even though this edition is sever-
al months late, it is still full of
great information and updates
about some of our members.
Thank you for your contribu-
tions!
If you are interested in submit-
ting information for future news-
letters, please watch for the e-
mail requesting updates some-
time in the spring of 2014.
Hopefully when you joined this
group, you received a copy of a
newsletter. If you were anything
like our family, it was SO nice to
finally “meet” other families who
were navigating similar challenges
and issues. Your updates and
group involvement are key to
our success and so we thank you
for your participation and in-
volvement.
In addition to family updates, we
are also looking for parents who
would like to be more involved
with our organization. In the
upcoming months we will begin
to restructure the board of Du-
plication Cares.
We want to take this opportuni-
Duplication Cares is committed to supporting families with children diagnosed with 7q11.23 Duplication
Syndrome, as well as being dedicated to raising awareness in the medical community about the existence
and treatment of this disorder. Recommended Resources:
1) “Like” Duplication Cares’ Facebook page AND Duplication Cares’ 7q Dupe Support!
2) Look at the 7q Research Program and Publications: http://louisville.edu/psychology/mervis/research/
dup.html
3) UNIQUE’s Pamphlet: http://www.rarechromo.org/forum/DisordersLeaflets.asp
Our Duplication Community...
I N S I D E T H I S
I S S U E :
School Transitions 2
ADHD 3
Research Clinic
Dates
3
Family Profiles 4
Duplication Care’s Mission:
Duplication Cares 2 0 1 3 N E W S L E T T E R
S P E C I A L
P O I N T S O F
I N T E R E S T :
Family Profiles
Upcoming Re-
search Clinic Dates
in Louisville, KY
ADHD Resources
Copyright C2013 7q11.23 Dup Group. All rights reserved, including the right of reproduction in whole or part in any form.
P A G E 2
“What can
parents do to
make the
transition
smoother for
both parents and
student? First,
take a deep
breath!”
School’s Out For Summer
New School, New Teachers and New Rules
The following article was
adapted from
www.peakparent.org
Parents who have students
transitioning into middle
school or junior high in the fall
may have a lot of anxiety about
the change in school routine.
What can parents do make the
transition smoother for both
parents and student? First,
take a deep breath! Transitions
are a natural part of life for
everyone. Transitions take
time and require learning to
adapt and preparing for the
new experience.
Here are a few ideas to
help you and your child feel
better about the new ad-
venture:
Visit the new school so
they can get a sense of
the school, see how clas-
ses are structured, meet
some of the teachers, and
practice opening the
“infamous” locker (a big
milestone between ele-
mentary and middle
school). Talking about
what to expect on Day
One and in the following
weeks at school helps
little ones prepare for
changes.
Take a few pictures of the
school so you can have
them, if needed, for a
social story or a daily
picture schedule.
Address concerns you
have about transition with
the IEP (school) team.
Take advantage of sum-
mer programs. Some
schools have academic
and/or recreational sum-
mer programs. These can
be great opportunities for
your child to gain some
skills in navigating the
school and an opportuni-
ty to meet new students
before school starts.
Embrace all the new pos-
sibilities. Middle school
offers a lot of new oppor-
tunities for your child
including extracurricular
sports and clubs, classes,
and social activities.
Here are a few suggestions
to help you, as his parent,
survive the middle school
transition:
Get connected with the school. Go to back-to-
school nights, open hous-
es, parent-teacher confer-
ences and other events
where you can connect
with the school staff and
other parents.
Be a resource for the
teachers. Let them know
how you can support
them in working with
your child. Communica-
tion is key! A little plan-
ning can go a long way.
tive programs. Most children
with disabilities do well in an
inclusive environment with
their non-disabled peers. Par-
ticipants with more significant
disabilities can also participate
in programs with non-disabled
peers with the help of a peer
buddy or an aide. For teens,
explore volunteer opportuni-
First, look for pro-
grams geographically
close to your
home. Convenience
matters! For exam-
ple, start with your
local recreation cen-
ter and ask to speak
with someone knowl-
edgeable about adap-
ties that help develop job skills.
If you’re looking for something
a little further away from
home, check out special needs
camps. One example is Adams
Camp. http://
www.adamscamp.org/ They
have programs in Colorado,
Nantucket, and Alaska
D U P L I C A T I O N C A R E S
Caption
describing
picture or
graphic.
Living with ADHD ~ Help is Available
P A G E 3
Ideally, environments that are bene-
ficial to children with ADHD offer
highly-structured surroundings and
consistency through set routines,
rules, and guidelines.
Often, when a child is diagnosed
with ADHD, the
first response from
his or her concerned
parent is, "What can
I do about it?" Alt-
hough life with your
child may at times
seem challenging, it
is important to remember that
children with ADHD can and do
succeed. As a parent, you can help
create home and school environ-
ments that improve your child’s
chances for success.
For resources about diagnosis,
treatment, medications, school
help, family life, organization and
time management and SO much
more, please go to:
http://www.help4adhd.org/
development, complete testing that
can be used to obtain a higher qual-
ity of service in schools, assist with
behavior and medication recom-
mendations, as well as ADHD,
anxiety, and developmental delay.
Speech assessments will also be
completed. Individual testing re-
sults from research clinics will be
given to participants to take home
and apply with their own health
care team.
The following is a list of future
clinic dates and options for families.
If you are interested in participat-
ing, parents or individuals should
contact Dr. Carolyn Mervis by
email (including their phone num-
ber) or by phone (502-852-3604)
The research covered by the Si-
mons Foundation grant is for chil-
dren aged 4 - 17 years. She also has
funds from the National Institute of
Child Health and Human Develop-
ment that can be used for children
with Dup7 from 12 - 35 months.
The latter children would not be
scheduled for research clinics; She
sees them throughout the calendar
year.
2014 Clinic Dates:
January 2014
June 2014
August 2014
Check with Dr. Mervis for
other possible dates or ap-
pointments.
The sooner you are able to contact
Dr. Mervis the better. Limited
space is available in each clinic.
More information
along with recent 7q
Dupe publications can
be found: http://
louisville.edu/
psychology/mervis/
research/dup.html
Duplication Cares is fortunate to
be a partner with Dr. Carolyn Mer-
vis and the University of Louisville
in Kentucky, USA. Dr. Mervis’ and
her research partner, Dr. Colleen
Morris (UNLV), along with their
team are the leading researchers of
7q11.23 Duplication as well as its
genetic opposite, the deletion locat-
ed in the same area, Williams Syn-
drome.
Dr. Mervis has obtained grant mon-
ey and funding which allows her to
further study the 7q11.23 duplica-
tion. Because of our involvement
in this work, we are paving the way
for those individuals who will be
diagnosed in the future. We all
know how we would have liked to
have more information, resources,
and direction upon diagnosis. Now,
individuals in the future will have
that gift.
In addition to the research, Dr.
Mervis’ team can better help us
understand our 7q family member’s
ADHD is
one of the
most
common
disorders
Louisville, Kentucky ~ Research
Caption describing picture or
graphic.
“As a parent,
you can help
create home
and school
environments
that improve
your child’s
chances for
success.”
Meet Dani Beard. Dani is six years old.
Dani’s mom is Renee Beard. The
Beard family lives in Louisville,
Kentucky, USA
DANI BEARD, age 6, Kentucky USA
Mads Andreas, age 6
Norway Mads Andreas is six. He has a younger sister (3
years in March) and a brother who is 11 years
(both non-dup). He is a sweet, happy and active
boy, who was diagnosed with dup 7q11.23 at age
1 1/2. A lot happened since then. For those who
doesn't know us, here is our story.
Our boy was not eating and drinking, he was non-
verbal, non-social and had few face-expressions.
He had some degree of anxiety, and needed rou-
tines on a daily basis. He also had a lot of pain due
to constipation. We were frequent guests at the
nearest hospital, due to his many problems. He
received intensive speech-therapy in kindergarten
at age 2 1/2 . He started walking when he 16
months.
The boy I describe above, is nothing like the boy
we have today! It's important to bring our
"sunshine story" to those of you who struggle, to
give hope for a better future. Our kids have in-
deed a lot of potential, if they are given correct
help and therapy.
Mads Andreas's interests at the moment: He just
loves to build with LEGOS. Every evening I sit
with him, and we construct houses and cars to-
gether. He also like to play computer-games
(Playstation3 and Nintendo DSi) - and he shows
excellent skills.
He also picked up many words from playing computer-games. He likes to
watch movies, and has no problems watching the same movies over and
over again. When indoor he also likes to draw. Outside he just loves to
walk for long trips in the forest, or at the beach. Finding "treasures" like
insects and other small creatures. He also likes to play with his RC-cars
(remote controlled vehicles), and with UFO (a flying disc launched by hand
power). He is unstoppable when he does an activity he really likes. He
loves to watch animals, or to feed animals. Mads Andreas has excellent
motoric skills, and did never received any treatment.
Cont… When it comes to language, we have seen a huge improvement
the past years. His speech therapy paid off very well. He is verbal almost
like a "normal" kid, but still a little behind his peers. We train on writing
letters, he is doing well. His anxiety is almost completely gone, and he
doesn't need the routines like in the past. His social interaction with other
children are an area of improvement, but still a way to go. He is
growing, but not fast. His growth is monitored by our hospital, and
so far we didn't put him on growth-hormones. He is a little short
for his age.
Page 4
Our boy is now potty-trained. He uses a diaper only at night. There are some accidents from time to time, but no
big deal. He eats almost normal, even he is a very selective boy about food. He pretty much likes to stay on the same "diet",
and doesn't show a lot of interest trying other kinds of food (or drinks).
The Way Ahead: We still struggle to put him to bed in the late evenings. He is "never tired", like with a normal child. He
sleeps very well during the night, when first fallen asleep. He doesn't tolerate being yelled at (when bad behavior). It's a bit
hard to explain. It's not "meltdowns", but more about anger-control. Our major worry for the future is school. We have no
idea how he will respond put in this new situation, and we expect that there might be "set-backs". We will work on that, so
that his positive progress is not going in reverse. That would really be a disaster! He is now in kindergarten Monday-Friday,
and will start at school in august of this year.
One last thing. Mads Andreas doesn't receive any medicines. There are no reasons for medication at the moment. We have
reasons to believe that he is "mildly affected" by the duplication, but it's still too early to say. We will continue to "fight" for
our boy, and encourage everybody to do the same!
- Best regards. Kjetil Andre Fredriksen, father of Mads Andreas
Page 5
Mikey, Gabi, & Kathi
New Jersey, USA
Mikey, age 8 and Gabi, age 10, along
with their mother, Kathi, have 7q11.23
duplication. In addition to 7q11.23 du-
plication, Mikey also has Mitochondrial
Disorder.
Mitochondria are the part of your cells that produces energy for your body to do the things it needs to do. You could compare them
to batteries. Most people's “batteries” charge every night when they go to sleep, and are fresh in the morning to work all day. The
difference is, Mikey's batteries don't really ever fully fill up, and they don't hold their charge very well. All of Mikey's organs are com-
peting for energy they need, but there's not enough to go around. Not having enough energy results in some systems not working
how they're supposed to.
This disease has caused Mikey’s body to experience poor growth, gastrointestinal issues, chronic intestinal pseudo obstruction, sleep
apnea, asthma, immunodeficiency, chronic infections, dysautonomia, dysphagia, aspiration, reflux, hypotonic, developmental delays,
apraxia, and autism spectrum disorder, among other things. He has a g-tube for supplemental nutrition and a colostomy which has
pretty much saved his life. Although doctors still do not know the exact complex he has, we still continue to travel monthly to The
Children's Hospital in Philadelphia. Mikey has at least 10 different specialists, and is on many medicines to treat all the issues he has.
Despite his many challenges, Mikey has the greatest smile that doesn’t stop him for keeping up with kids of all ages. He loves hockey
(Devils & Flyers), cars, fire trucks, squinkies, hexbugs, legos, and his notebooks and pens. Mikey is a trooper and one tough little boy.
He fights so hard to keep up with others. He pushes himself all the time. He just wants everyone to know that if he has the energy
and the strength to do something, he will.
Page 6
Some days are harder than others, but he just wants to be a kid and “try” to play with other kids. He definitely doesn’t want to be left out
of the fun. It’s a daily struggle feeling sick on the inside while you look fine on the outside. Every day when I come into my kitchen I see
his medicine syringes next to all the prescription drugs he needs to take. I see his colostomy supplies and formula that he needs to help
him thrive. I open up the refrigerator and see his growth hormone shot. When I get him dressed for school each morning I see extra
extensions attached to his skinny little body. At bedtime I see the two machines that sit by his bedside. All these things are hard to see
but what I do love to see is when he wraps his tiny arms around me and says, “I love you mommy, even when I marry my girlfriend”. His
dreams are no different than any other little boys, except he's living with a disease where there is NO CURE. I hope his dreams will al-
ways come true.
Gabi, Age 10
Thankfully Gabi is healthy. She is shy, but once she gets to know people she opens up and becomes the “Social Butterfly.” She might be
very social, but when it comes to expressing her feelings she has extreme anxiety. Two years ago she was diagnosed with the same
genetic disorder Mikey has, however it is very mild. Gabi does not like to talk about anything that makes her sad or angry. For example
when we have to tend to Mikey more, she gets extremely upset and begin to act out. She was only doing this at home, but now she will
show these behaviors out in public. When we reprimand her she gets very upset, and begins to argue with us. Gabi is also very com-
petitive with Mikey which then sets him off. This has brought us to the conclusion that we needed some professional help to help ease
some of her anxiety. We are trying to get Gabi some outside counseling when needed.
Every day we are so proud of Gabi. She is an amazing big sister and loves her brother very much. She is so close to him. Before I con-
clude, I thought I would share with you a few things Gabi likes to do. She really enjoys spending time with her family. She loves watch-
ing TV, especially I Carly, Victorious, Shake it Up, Good Luck Charlie, and Jesse. She loves to read, write, and draw. Gabi also loves her
American Dolls, dancing, acting, and using her imagination. She likes to take pictures from books and magazines and use them to create
stories. Gabi is just so much fun to be around and the best big sister ever.
Cont...
Mom ~ Kathi Living With The 7q Duplication Disorder The last few years have been difficult, but as I learn more about the duplication I think
back to the way I was taught in school. Learning that my children and I are affected with the duplication it has really impacted our family.
We have to learn how to manage all our special needs and accommodate so we all understand each other. As I was growing up I didn’t
know I had 7q. I just knew I was in Special Education from Kindergarten to 12th grade because of my learning difficulties. I see many
similarities with my kids. I definitely had anxiety growing up. Thankfully I had wonderful parents and teacher who assisted me. I do
recall having a routine which helped me learn how to manage my time better.
I didn’t speak until I was three years old and I was very lazy. My parents blamed it on my sister who was very motherly and would do
everything for me. However as I entered Elementary School, I was definitely delayed. I had speech difficulties and learning difficulties. I
was placed in the Resource Room in 1st grade. I didn’t mind being sent to another classroom. For me it was excitement as I got to
leave class and go to a room where it was fun. What I didn't realize I was actually learning, but in a different way. I recall myself being
silly and hyper when I couldn’t do something. In fact, I still am. Mikey on the other hand shuts down when he cannot do work, and
Gabi, which is hardly ever, as she is very intelligent, tends to get frustrated. I guess that is where she is a lot like me and wants every-
thing to be perfect.
In Middle School it was pretty much the same, but I was more aware of being sent to the "Retard Room". I apologize for that term, but
the kids who didn't go to special classes called it that. It embarrassed me but I knew I had to go to make my parents proud of me. I
remember getting angry and refused to do my assignments, but I knew I had to complete the work if I wanted to go back to the regular
class. I worked hard, and got use to going especially because I learned that my best also had learning difficulties and we both knew we
were not going to give up. We even made an agreement that when we grew up we were going to be Nursery School Teachers, which
we are today.
As I got into High School this is where it became tougher. I knew this was the year when grades matter and it reflected to where you
could go to college. Math was my most difficult subject. I had to pass the High School Proficiency test and it took me forever. When I
was a Senior I was in a Freshman Math class. It didn’t bother me much because I knew I was one of the oldest and these students
looked up to me, but I did feel awkward as other students my age were taking higher math classes, and here I was taking “easy math”.
In 12th grade I asked my parents if I could be taken out of Resource Room. We had a Team Meeting, and we all agreed with a Study
Hall and a Tutor for Math and Reading afterschool I could.
It was a great experience going to The Lab School. I got to meet many friends who were taking classes to pass their G.E.D. They
actually looked up to me and were impressed I was in college already. We all helped each other and made sure everyone did well to
succeed and get into college as well. There was one friend in particular who has become my best friend. We both have been there
for each other, and today his wife and I are best friends as well. She is very supportive, and our kids are so close that they have be-
come great friends as well.
In all honesty I was glad I had the extra assistance. It was just what I needed in order to succeed. As I got older I knew my brain did-
n't work like other people my age. I had to organize my time. And, being the perfectionist I was, was very helpful It might have tak-
en me almost six years, but I graduated from college with a 3.4 GPA. I even got special recognition as having a learning disability and
not giving up even when my College Writing Professor told me I shouldn't be in college. She would tell me my writing was unor-
ganized and written as if I was in Middle School. It hurt as I worked so hard on assignments from the day it was assigned. I am really
proud of myself as I have become independent. All my hard work paid off. I even stayed down in the DC area and got a job as Child-
care Teacher. I lived in Maryland for almost ten years until I moved back to NJ to start a family with my husband. It shocked me as I
didn't think I had it in me that I would ever find someone to date.
Growing up with a learning disability or the duplication disorder has been rough. I am still learning how to manage my time, and now
that I have two kids with it, I have to manage our time based on our needs. We do have a routine, but it can become stressful when
something doesn’t go our way. My children are so much like me when I was growing up, despite the aggressive behavior that Mikey
has. At time we are faced with issues and I tend to get frustrated or anxious. I have to remember I need to stop and slow down as
my brain gets so overwhelmed too, and I tend to worry what others think when my kids are out of control when I know it is not
their fault. It is just the way his brain is functioning.
I am learning something every day. I know for a fact that routine is very important for us and we need to stick to it to succeed in
getting what we want. It is extremely tough, but if we are consistent our lives will be much calmer and we wouldn’t have to feel so
anxious. I am thankful I found this group. The support we can give each other is what we need to help us get through the difficult
days. If I am overwhelmed I will come to the group and ask for suggestions or advice, and from there I can get my thoughts together
to help me deal with the challenging issue. I know for one thing I am not giving up on my children. I will get them the assistance they
need to help them with whatever they are have trouble with. I know you as parents are also not giving up on your children and your
children shouldn’t give up on themselves. You can do it and grow up to be whatever you want.
~ Kathi
I worked my butt off knowing that I had to
prove to my parents I could do it so I could
go to College. After I graduated from High
School Graduation I went off to American
University in Washington, DC. My S.A.T.
scores were low, but because I had some
strings attached, the school (my dad, brother,
and sister all went there) had me enroll as a
Non-Degree Student. The Learning Services
Coordinator requested for me to attend clas-
ses at The Lab School of Washington to get
as much needed assistance as I took college
classes so I could become a Degree Student
the next semester. I was overwhelmed that I
would have to be working my butt off. It
meant I was not going to get “the college
experience”, but I learned how to manage my
time. There were plenty of times I would
goof off when I could not do the work, but I
was able to come back into reality and prove
to my family that I could remain in college.
Page 7
Lucas
Lucas was diagnosed with Dup 7 at 3.5 yrs old. He is now 5 years
old and attends an integrated preschool in our public school. He
has been in this program since age 3 and has made progress with
speech/language and gross motor skills. He receives 1:1 speech
therapy 4x per week and physical therapy 2x per week. We just
had an IEP meeting and speech will be adding another day, group
session. In addition to therapy at school, we send him to a private
speech therapist 1x per week.
Massachusetts, USA
Lucas has made most of his progress with speech in the last year. He went from 100 words a year ago to 100's of words and 2 to 3
word utterances now. Each day he surprises us with a new word or phrase. He does not say many words correctly or clearly but he
is able to verbalize his needs and wants. He uses gestures, a few signs and language to communicate. He needs time to respond to
questions and he does well when talking to him at eye level/face to face. We get a lot of verbalization and imitation through play and
reading books. He likes to play cars or dollhouse and role play a character with a car or doll/little people figurine etc.. He has a com-
munication book that he brings to/from school that is filled with pictures with words to aid in communication, however he has quickly
outgrown need for it as he can say most of what is in book at this point. The book was made after he had an AAC (augmentative
assistive communication) evaluation done at school. He attends an integrated preschool where half the kids have a disability (mostly
speech related) and the other half are peer models. We think being surrounded by his peers each day in a structured environment has
made a significant difference in language and communication. We are thankful for our private speech therapist, who has been a valua-
ble team player and has provided guidance/support at the IEP meetings. Her knowledge and expertise has been well received by the
school team and they have worked together to formulate goals and interventions. We are excited and hopeful about the progress he
has made over the last year but he still has a long way to go.
Lucas presents as a very shy and quiet boy. He is socially appropriate with adults and peers. He tends to be quiet in large group activi-
ties and, at times, does not participate due to his decreased ability to communicate. We are concerned that as Lucas becomes more
aware of his speech/language delay, he will consequently become at risk for ODD, selective mutism and anxiety due to frustration and
social anxiety/isolation. These concerns were addressed in the IEP. His frustration level is relatively low considering his significant
delay and he has not exhibited angry outbursts at school. However, he has shown some behaviors at home (which are typical for his
age) as evidenced by yelling, hitting and pushing when he does not get his way or cannot articulate his needs/wants. He is easily redi-
rected and consoled. He also self soothes by sucking on his favorite blanket (he does this at home only and not often) and he has developed a new habit of grabbing a little piece of hair on his head and rubbing it against the palm of the other hand. We do not see a
behavioral therapist at this point in time.
He will be starting kindergarten in September and we remain concerned about his speech/language and motor skills and how the syn-
drome will affect reading, writing, math and social skills etc.... These concerns have been verbalized at the IEP meeting and document-
ed on the IEP. We are hopeful the school will make the necessary provisions to aid in his success.
We have been in touch with Dr. Mervis and are planning to participate in the research study in August.
Thank you Duplication Cares for all the support and information on Dup7.
Gayle and Craig Johnson
Parents to Lucas
Massachusetts, USA
Page 8
I would like to introduce our son Drew, who is 3.5 yrs old and recently
diagnosed with the duplication in February 2013. We are from Edmonton,
Alberta (Canada) and we are excited to have found such a wonderful network
of families to chat and share with.
Drew is a very sweet and happy little boy, who loves to play with his older
brother Cole (5.5 yrs old) and is most comfortable when we are at home as a
family. He is currently in his first year of preschool and his language skills re-
main to be his biggest obstacle (severe expressive language delay). He is also
very anxious in social settings, most noticeably when he is on his own (social
anxiety).
But Drew has made progress over the months and we are determined to sup-
port him every step of the way. The diagnosis is rare - but from what we have
learned so far, it is what makes our son unique.
Keeping everybody in our thoughts,
Jane, Jason, Cole and Drew Shenkarek
Drew Alberta, Canada
Jackson Layton, Utah
USA
Jackson just finished 6th grade (12 yrs old) in
a regular classroom. He gets Resource help
for reading comprehension, math, and writ-
ing. He is about a year behind in core sub-
jects. Expressive writing is a struggle for him.
Outside of school, Jackson goes to Aquatic
Swim Therapy twice a week for one hour.
This has been a great resource for him to
build core strength, strengthen muscles, and
to work on coordination.
Jackson struggles socially and does not have
close friends. However, he has good rela-
tionships and playmates with cousins his age
and neighbors.
Jackson currently takes 5 mgs of Abilify and
30 mgs of Celexa. The Abilify helps with his
Negative Behavior and the Celexa helps him
with anxiety. We also have a zero tolerance
in the home for negative outbursts. By
working with Behavior therapists, we’ve
created a tool to help us keep negative be-
havior in check. Jackson functions best when
he has rules, guidelines, and routine. This
behavior is modeled after those parameters.
Page 8
Money is important to Jackson. He receives a small allowance each week for completing jobs around the house ($3.20 week). Every
time Jackson screams at us, is negative towards a family member, etc, he loses 5 cents. Because the program was explained to him, we
don’t have to say anything when an incident occurs. We just say “5 cents”. Jackson hates to lose money and so he tends to get more
upset. I just say, “that 5 more cents”. This keeps happening until he make himself calm. He also uses his room to have quiet time and to
try and refocus so he doesn’t lose control. It can be a challenge at first, but we have seen marked improvement with his ability to regain
control and move on past the disturbance.
Jackson is still active in Boy Scouts and has earned his First Class rank. He will be attending a week long sleep away Scout Camp this
summer without mom or dad. Dad went with him last year. This will be his first solo experience. We are excited for him and for the
progress he has made and continues to make each year.
Life with the duplication can be challenging. We always have a goal and are working towards Jackson’s increased independence. Howev-
er, even though there are tough moments, Jackson meets each challenge and has come so far in the past 12—almost 13 years. Jackson
will begin 7th grade in the fall of 2013 (Junior High!). He will have core classes in a Resource environment mixed with general education
elective classes. It is going to be a big transition for all of us. However, we are excited for this new chapter in our lives.
Best Wishes to all of you. We enjoy our interaction with you!
Jennie and Ryan Dopp
Layton, Utah USA
Cont...
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