Pass It On is a free quarterly newsletter for parents of children with special health care needs and disabilities, health care professionals and friends

1. Pass It On 1
New Hampshire Family Voices
Winter 2009
Visit NHFV Website...
Check it out!! NH Family Voices has recently given our web site a whole new
look. Some pages are brand new and others have been updated and
expanded. Thanks to the re-design we’ve been able to include additional
information on our various projects, share information on staff and we still
have the potential to grow. We are very excited to have an entire page
devoted to the efforts of our teens on the YEAH council, announce the
New Hampshire availability of new materials and we even have a place where you can
purchase a NH Family Voices coffee mug!
Family Voices
A Family to Family Of course you can still order
Health Information and
books from us via the site and
Education Center
sign up for our newsletter,
“Pass It On” or to receive
Resources Information
other NHFV information.
Support Education
Our resources and links pages
are growing every day as the new
Co-Directors
Terry Ohlson-Martin site continues to be a “work in
Martha-Jean Madison progress”.
1-800-852-3345 X 4525
or (603) 271-4525
We invite you to stop by the site, check it out and please let us know what
Email: nhfv@yahoo.com
you think. The most important thing about any web-site is it’s helpfulness to
those who use it. So try it out and then give us some feedback. We look
Web site:
www.nhfv.org forward to hearing from you!
www.nhfv.org
YEAH Council Conference Page 3
And
Hands and Voices—NH Chapter Page 10
Inside…. Much
Before I was a Special Parent Page 15
More …..
Our Child with a Chronic Illness……. Page 16

2. NH Family Voices
2
2. VISIT the AutismVotes.org
PIO Policy Updates website and register to receive
their Advocacy Alerts. This will
ensure that you receive the most
updated information as quickly as
ADVOCACY ALERT: possible.
Insurance Reform for Autism
3. FORWARD this to your family,
HB 569 “Connors Law” friends, neighbors, teachers,
therapists and co-workers, anyone
The Autism Insurance Reform Movement in New Hampshire has
living in the State of New Hamp-
begun: Rep. Suzanne Butcher (D-Keene) has filed a bill that would
shire who would be interested in
require private insurance companies operating in NH to cover standard
helping you work to end insurance
treatment protocols for autism spectrum disorder. She is joined by
discrimination for children with
co-sponsors Sen. Maggie Hassan (D-Exeter), Sen. Kathleen Sgambati
ASD.
(D-Tilton), Sen. Molly Kelly (D-Keene), Sen. Martha Fuller Clark (D-
www.connorslaw.info
Portsmouth) and Rep. Jill Hammond (D-Peterborough).
In 2008, volunteers in five other states - Arizona , Florida , Louisiana , We thank you for your support,
Pennsylvania and Illinois, achieved insurance coverage for their
Kirsten Murphy
children, including coverage for behavior-based treatment. A total of
Advocacy Chair,
eight states now meet the standards of appropriate coverage as set
NH Chapter, Autism Speaks
out by Autism Speaks and other national groups. These include ending
&
autism insurance discrimination and covering treatments and therapies
Michelle Jarvis
that are medically necessary for our children such as speech, occupa-
President, Autism Society of NH
tional therapy and behavior-based therapy.
NH has a proud tradition in advancing the rights of individuals with
disabilities through the grassroots activism of ordinary parents and
citizens. We have enlisted the help of the Autism Society of New
Hampshire, the Autism Society of America, and Autism Speaks
Government Relations Department for technical assistance.
However, the real work of educating our legislators about the needs
of our children falls to us, the parents and self-advocates who have
struggled to make medically necessary treatment affordable and
available for all NH families that support someone with ASD.
We have a long road ahead through the legislative process. To
achieve coverage for children in our state, we need everyone's help!
HOW CAN YOU HELP?
Interesting Reading
1. EMAIL us at AutismInsuranceReformNH@gmail.com if you are
interested in helping to lead efforts in your region, speak with state The Autism Society of America has
legislators, attend hearings in Concord , and help us spread the released a paper titled, “Guiding
word. We would also like to hear from New Hampshire parents of Principles for Meaningful Private
children with ASD who have been denied insurance coverage for a Health Insurance Coverage Legisla-
treatment that your child's doctor has determined to be medically tion for Individuals with Autism”
necessary (for example, occupational therapy, psychotherapy, or It can be found on their website:
a program based on ABA). www.autism-society.org

3. Pass It On 3
YEAH Council
New
Presents
Hampshire
“Where I am Coming From, Family
Where I am Going” Voices
A half day conference for youth with
Pass It On is a free quarterly
special healthcare needs, disabilities, or chronic health conditions
newsletter for parents of children
and their families and friends. with special health care needs and
disabilities, health care professionals
Saturday, March 21, 2009 1:00 - 4:30 PM
and friends.
Dartmouth Hitchcock Manchester
100 Hitchcock Way This publication is made possible by
Manchester, NH funding from NH Department of
Health and Human Services, Special
Keynote Speaker: Jonathan Mooney
Medical Services (Title V, Social
Jonathan Mooney is a writer with dyslexia and an activist who learned Security Act). Opinions, activities,
products and publications mentioned
to read when he was 12 yrs old. He has since earned an honors degree
are for informational purposes only
in English Literature at Brown University and has written and
and do not imply endorsement by
published two books. The first, “Learning Outside the Lines”
NHDHHS or Special Medical
(now in its 14th printing) hit the bookshelves when he was 23. Services. The NH Department of
Coupled with his most recent book, “The Short Bus”, Jonathan has Health and Human Services does not
established himself as one of the foremost leaders in LD/ADHD, discriminate in its activities on the
basis of race, color, national origin,
disabilities and alternative education.
sex, religion, age or disability.
For more information or to register, call NHFV at This publication is not intended to
(800) 852-3345 X 4525 or (603) 271-4525 or you can provide medical advice on personal
download a registration form off our website, health matters. All health concerns
should be discussed directly with your
www.nhfv.org (Youth Activity page)
physician.
Permission is granted to quote from
Quiet Leadership this publication, while giving credit to
Pass It On, a publication of NH Family
The quiet approach to leadership is easy to misunderstand and Voices (and original author, if appro-
mock. It doesn't inspire or thrill. It focuses on small things, priate). Some material may carry
careful moves, controlled and measured efforts. It doesn't other copyrights as well (noted where
appropriate) and cannot be reprinted.
provide story lines for uplifting TV shows. In contrast to
heroic leadership, quiet leadership doesn't show us the
For correspondence:
heights that the human spirit can reach. What, then, do the
Martha-Jean Madison
imperfect, unglamorous, everyday efforts of quiet leaders
New Hampshire Family Voices
amount to? Almost everything. The vast majority of difficult
129 Pleasant St. Thayer Bldg.
human problems are not solved by the dramatic efforts of Concord, NH 03301
people at the top but by the consistent striving of people In state toll free: 1-800-852-3345
working far from the limelight. Ext. 4653 or (603) 271-4653
Joseph L. Badaracco, Jr. E-mail: nhfv@yahoo.com
Web site: http://www.nhfv.org
We Don't Need Another Hero

4. NH Family Voices
4
Partnering with Your Child’s School: A Guide
for Parents. Information and Resources for
Families of Children with Health and/or
Arthritis Foundation
Mental Health Care Needs
College Scholarships
Being a parent to a child with health or mental The Arthritis Foundation is offer-
health care needs can be difficult and exhausting. ing three $1,000 college scholar-
We parents are our child’s primary caregiver and ships to high school seniors or
the key to his or her success. Therefore, it is very college undergraduates with juve-
important that we learn as much as we can about the nile arthritis or other rheumatic
child’s condition and needs, and develop partnerships disease.
with the child’s doctors, therapists, and school
Students must be a resident of
staff. We are our child’s best advocate and must
CT, ME, NH, RI, VT, Clinton,
be informed to be successful.
Essex, or Franklin County, NY.
Application Deadline:
The HSC Foundation, in partnership with George
April 17,2009
Washington University’s Graduate School of
Education and Human Development, offers a new Applications are available by
resource for parents. The booklet “Partnering with mail, e-mail, or fax.
Your Child’s School: A guide for Parents -
Arthritis Foundation
Information and Resources for Families of Children with Health and/
6 Chenell Dr.
or Mental Health Care Needs” is available online in English and in
Concord, NH 03301
Spanish.
(800) 639-2113 / (603) 224-9322
Fax: (603) 224-3778
This booklet is designed to help parents of children who have been
E-mail: info.nne@arthritis.org
diagnosed with health or mental health care needs to learn about
available resources and to develop a partnership with their children’s
schools. The booklet’s content has been reviewed and validated by
groups of parents, youth, and educators and is produced in partnership
UCB Family RA College
with the Council for Exceptional Children and the National Association
Scholarships
of State Directors of Special Education.
UCB pharmaceutical company is
NH Family Voices have made copies of these booklets. If you would
offering thirty $10,000 college
like a printed copy, call us… 800-852-3345 X 4525
scholarships to those with
rheumatoid arthritis or
To download a copy go to:
immediate family members.
www.hscfoundation.org/whatwedo/familysupports.php
Deadline: March 20, 2009
Contact UCB (888) 854-4996
www.reachbeyondra.com/
scholarship

5. Pass It On 5
New Support
Group in
Milford, NH
Providing Laptop Computers and Internet
Asperger’s/NLD
Access to Stay In Touch
Meets the 2nd Tuesday of the
Ask any teen, he will tell you that communication with friends,
month from 6:30-8:30 pm
family and school is about as important as it gets. Now consider
Wadleigh Memorial Library
the child, of any age, who is hospitalized, sometimes far from
Questions? Call Chris Bonner at
home. Communication literally becomes a lifeline.
(603) 673-7191
That's where KINfolk can help. Since 1999, KINfolk has been
lending laptop computers and internet access to children whose
lives have been disrupted by disease and injury. These laptops
provide children nationwide and their families a means of communi-
cation with friends, family, clergy and teachers - the very people
who love and support them at a time when they need it most. The
laptops are loaded with games and fun sites for kids along with
The FRIENDS Project
internet filters to prevent access to undesirable sites.
The FRIENDS Project was started
KINfolk Hospital Program
in 2000 by the Portsmouth School
KINfolk provides laptop computers to pediatric hospitals who
Department because students and
request the service. The computers support dial-up, wired and
parents were frustrated over the
wireless Internet connections. We encourage hospitals to assign
lack of friendships that people
laptops to children in their rooms so that they have access to the
with disabilities experience.
laptop 24 hours a day. Parents and siblings are encouraged to use
FRIENDS is a partnership between
the laptop as well.
the Portsmouth School Department
KINfolk Direct Loan Program
and a working group of parents and
With a referral from a health
community members.
care professional, KINfolk
The FRIENDS Project endeavors
provides a loaned laptop to
to combat the social isolation that
children who are convalescing at
many people with disabilities
home. Because the computer will
Experience through an integrated
be used by just one child, each
approach that promotes inclusion
laptop is tailored to the specific
practices. FRIENDS also recog-
needs of that child. The child may
nizes, encourages and promotes a
use the computer from both home and hospital. After the proper
variety of relationships in many
referral, they deal directly with the child's family, although, in
settings. The FRIENDS Project
some cases, the child's social worker or hospital volunteer helps
offers a number of programs and
with arrangements. When the child no longer needs the laptop, it
activities. For more information
is returned directly to KINfolk.
call: Heidi Chase, Executive Direc-
For more information contact KINfolk:
tor at (603) 436-7100 x2919.
Telephone: (302) 765-9550
www.friendsproject.org
E-mail: kinfolk1@verizon.net
Web: http://www.kinfolkkids.org

6. NH Family Voices
6
NH Family Voices EPILEPSY ON OUR TERMS:
STORIES BY CHILDREN WITH
Lending Library SEIZURES AND THEIR
PARENTS
In their own
Books are sent through the mail with a words, children
postage paid return envelope. with seizures and
their parents talk
To borrow a book just give us a call at
about epilepsy—
1-800-852-3345 Ext 4525
from how they
or online @www.nhfv.org
handled the first
seizure, adjusted to the diagno-
sis, managed medication, side
effects, dealt with school,
THE RED BEAST: CONTROLLING ANGER
friends, healthcare providers.
IN CHILDREN WITH ASPERGER'S
Very honest accounts.
SYNDROME
Anger is like a big red beast… it yells and
LATE, LOST AND
hits when it grows. When Rufus is hit in the stomach by a ball, his red
UNPREPARED: A
beast grows and erupts. This is the story of how Rufus learns to
PARENTS' GUIDE
control his anger and tame his red beast.
TO HELPING
CHILDREN WITH
1-2-3 MAGIC FOR KIDS: HELPING YOUR
EXECUTIVE
CHILDREN UNDERSTAND THE RULES
FUNCTIONING
A new book designed to help parents explain 1-2-3
Is your child always late turning
Magic to their children. This book is presented from
in papers? Showing up late for
the point of view of young children , and includes games,
practice without his soccer
puzzles, and lots of illustrations.
shoes? Saying things without
thinking? This is a practical guide
TUBES IN MY EARS: DOWN SYNDROME for parents whose children have
AND SURGERY difficulty with planning, organiza-
Victoria “Tori” tells the story of going to the tion, impulse control and memory.
hospital to have tubes put into her ears. Photos
depict the whole process. Very reassuring THE TYRANNOSAURUS TIC
story for children who are going to the hospi- Michael can’t stop
tal for surgery, his eyes from
blinking and then
WHAT IS DYSLEXIA?: A BOOK EXPLAINING starts to make
DYSLEXIA FOR KIDS AND ADULTS TO USE noises. 12 year
TOGETHER old Michael talks
Although specifically written to explain Dyslexia to about what it is
children ages 8-11, this is a great book for anyone like to have tics
who wants information about the types of Dyslexia. It start, kids tease, and then to
provides information and examples as well as highlights learn why this is happening to
that everyone has strengths. him. Story mixes in a lot of
humor with emotions.

7. Pass It On 7
Wentworth-Douglass Hospital presents:
Grandfamilies State Law and
Community Connection: Parenting
Policy Resource Center
a Child with Chronic Illness
Casey Family Programs, the
A Free workshop for Parents and Caregivers
American Bar Association
Saturday, April 4, 2009
Center on Children and the
8:30am -12:30pm
Law, and Generations United
The McConnell Center
are proud to announce the
30 St. Thomas St., Dover, NH
Grandfamilies State Law
and Policy Resource Center,
Wentworth-Douglass Hospital recognizes the unique
found at www.grandfamilies.org.
challenges of raising a child with chronic medical
This website provides information on state laws
needs. They hope the Community Connections will
and legislation in support of grandfamilies. The
support, encourage, and refresh the parents and
easy-to-use database allows for a search of laws
caregivers of these special families. The morning
and legislation that address common legal ques-
will include a dynamic keynote speaker, choice of
tions surrounding relative care giving both within
breakout topics, lunch, and representatives from a
and outside the child welfare system. Each topic
variety of community services that offer support to
is analyzed and accompanied by a story to show
families.
key concepts. There is also a list of related
For more information call:
resources to learn more.
Family Resource Center - (603)740-2574
The Including Samuel Project presents the
New England Inclusive Education Leadership Summit
Friday, April 10, 2009 | Manchester, New Hampshire
This day-long summit, sponsored by the Institute on Disability (IOD) at the University of New Hampshire,
will give participants the opportunity to: Learn the latest best practices and leadership strategies on
inclusive education, meet national leaders of inclusive education, and problem solve and network with peers.
Presenters will include the central figures of the documentary film Including Samuel including (pictured
above from left) Keith Jones, Betsy McNamara, Joe Petner, Dan Habib, Cheryl Jorgensen, Norman Kunc,
and Barbara O'Brien, plus Anne and Emily Huff and staff members of the IOD.
Contact Mary Ann Allsop or Cat Jones at (603) 228-2084 for more information.

8. NH Family Voices
8
COMPASSIONATE
Social Security News ALLOWANCES FOR SOCIAL
SECURITY DISABILITY
The initiative called Compassion-
ate Allowance, will fast-track
On February 17, 2009, President Obama signed the American
applications for Social Security
Recovery and Reinvestment Act of 2009. This new legislation
disability for applicants with any
provides a one-time payment of $250 to Social Security and
of 25 rare diseases and 25
Supplemental Security Income beneficiaries.
cancers whose medical conditions
Over 60 million beneficiaries will receive a one-time payment. It is
are very severe.
expected that all payments will be delivered by late May 2009.
There are 6,000 to 7,000 known
To assist in issuing these payments as quickly as possible, benefici-
rare diseases, many of which
aries should not contact Social Security unless they do not receive
could qualify for compassionate
their payment by June 4th. You can learn more about this
allowance. Many people with rare
one-time payment at www.socialsecurity.gov
diseases encounter delays of
months or even years when they
SOCIAL SECURITY’S PASS PROGRAM CAN HELP FUND
apply for assistance through SSA
WORK
because those making the deci-
The Social Security Administration Plan for Achieving Self-Support
sions are not familiar with their
(PASS) is an important work incentive for motivated Supplemental
diseases.
Security Income (SSI) recipients and Social Security Disability
Often, people with rare diseases
(SSDI) beneficiaries. The purpose of a PASS is to help fund educa-
initially are denied assistance but
tion, training or other items to reach a specific job goal chosen by
later reapply, often with the help
the disabled individual. The outcome of a PASS is for the individual
of an attorney, and ultimately are
to obtain a job that will reduce or eliminate dependence on disabil-
approved. The delay and expense
ity payments.
of attorney fees can be over-
To qualify for this program, a person should select a work goal that
whelming to people who are
is feasible for himself/herself given the nature of the impairment,
already coping with serious
prior work history and training. The individual then contacts the
illness, major medical expenses,
local Social Security Office for a PASS form (SSA-545-BK). The
and loss of ability to perform
application states the job goal, the steps needed to reach the job
normal activities, including work.
goal, and the expenses needed to reach the job goal. Allowable
SSA has partnered with the NIH
expenses are expenses necessary to achieve the work goal and must
Office of Rare Diseases to bet-
be of reasonable cost. There are many people who can help with the
ter understand the diseases in
application – vocational rehabilitation (VR) counselors, organizations
the U.S. classified as rare.
that help people with disabilities, the local Social Security Office
or anyone else willing to help. The completed application should be To read more about rare
mailed or brought into the local Social Security Office. diseases, go to NORD's website
(www.rarediseases. org).
The PASS Specialists also provide training about PASS to organiza-
tions that help people who have disabilities. They are available to
To view the SSA list of 25 rare
visit with groups to explain in detail how PASS works, how to
diseases, and 25 cancers, go to
complete the application, and what evidence is needed to support
www.socialsecurity. gov/
the application. The PASS Specialists servicing all of New England
compassionateallowances.
are located in Boston, Massachusetts. You can reach them at
1-800-297-4291 for further questions or to schedule a visit.

9. Pass It On 9
New National Center for Parents with
Disabilities and their Families
Through the Looking Glass is proud to announce its new National
The Assistive Technology
Center for Parents with Dis abilities and their
Exchange in New England Families. This National Center is funded by
NIDRR, U.S. Department of Education.
The goal of The Assistive Technol-
ogy Exchange in New England is to
The Center targets three national populations:
put AT equipment that is not
parents with diverse disabilities;
currently being used into the hands
family members; and,
of someone who can benefit from
service providers and trainees who have a
it. The exchange is a free
particularly critical impact on parents.
quot;classified adquot; designed to help
people buy, sell or give away
The Center's activities focus on priority issues facing parents with
equipment.
disabilities and their families: custody and parental evaluations; family
The Assistive Technology Exchange roles and personal assistance; paratransit; and, intervention with
in New England is primarily for New parents with cognitive and intellectual disabilities and their children.
Englanders, although they do
accept entries from neighboring The overall goal of this project is to Improve the quality of life among
states. Vendor participation is parents with disabilities and their families To meet this long-term
Welcome, but they ask that you outcome, they have identified four project objectives that incorporate
identify your organization name in the project's research, development, training, technical assistance and
your registration Contact dissemination activities:
Information.
Increase the national availability of accessible and disability
Some of the categories of devices appropriate resources for parents with diverse disabilities and
listed on The Assistive Technology their families;
Exchange in New England are:
Increase knowledge of parenting with a disability among diverse
Vision
parents, family members and providers;
Hearing
Increase informed practice and informed decisions regarding
Speech Communication
parenting with a disability among providers; and
Mobility, Seating & Positioning
Daily Living Increase legislative and policy changes to decrease discrimina-
Environmental Adaptations tion against parents with disabilities and their children.
Transportation and Vehicle
The National Center will be staffed by nationally recognized experts
Modifications
regarding parents with disabilities, most of whom have personal or
Computers and related items
family experience with disability or deafness.
Recreation, Sports, and
Leisure
For more information visit their website at: http://lookingglass.org
www.getatstuff.org
or contact by Phone (voice): (800) 644-2666
Telephone: (860) 424-4881 (V) (TTY): (800) 804-1616
(860) 424-4839 (TTY)

10. NH Family Voices
10
NH Hands and Voices
Peer Support
Parents from around NH are working to establish a
Groups
state chapter of Hands & Voices, a national, non-
Granite State Independent Living
profit organization dedicated to supporting families
(GSIL) offers a variety of peer
with children who are Deaf or Hard of Hearing
support groups for people with
without a bias around communication modes or methodology.
disabilities. The Peer Support
groups meet throughout New
The group is a parent-driven organization and they look forward to
Hampshire. The groups are
working with professionals and members of the D/HH community to
cross-disability so anyone
provide families with the resources, networks, and information they
with a disability can join.
need to improve communication access and educational outcomes for
their children. Contact information:
GSIL - (800) 826-3700 (888-
All families and members of the D/HH
396-3459 TTY) and ask to speak
community are welcome. Families of
with the Peer Group Coordinator,
deaf and hard of hearing children
or email: pam.locke@gsil.org
share a common thread and H&V
A listing is also available online
provides a welcome spot for kids to
www.gsil.org/peer_support.htm
get to know other kids who are
D/HH and for parents to meet other
parents. The group is in it's infancy and
Fruits and Vegetables
looking for members. They have not yet
raised funds to pay for interpreters but if
Recipe Data-base
you would like to join and need an interpreter, please contact them to
let them know. Getting tired of coming up with
ideas for meals? The Center of
Disease Control (CDC) has a neat
You can learn more about local events and
web feature that allows you to
connecting with other parents at:
select the fruit(s) or vegetable(s)
http://groups.yahoo.com/group/ then it brings up recipes contain-
newhampshirehandsandvoices ing the fruit(s) or vegetable(s)
selected. You can also find recipes
For more information, please contact us at:
by meal type i.e. breakfast,
nhhandsandvoices@yahoo.com or
dessert, entrée, soups, etc.
(800) 852-3345, ext. 4525
Website:
To learn more about National Hands and Voices http://apps.nccd.cdc.gov/
Web: www.handsandvoices.org dnparecipe/recipesearch.aspx

11. Pass It On 11
the funeral, the farmer had the
cow slaughtered to provide
We Are In This Together enough meat for all of them.
The mouse looked upon it all from
his crack in the wall with great
A mouse looked through the crack in the wall to see the farmer and sadness.
his wife Open a package. quot;What food might this contain?quot; The mouse
So, the next time you hear some-
wondered - he was devastated to discover it was a mousetrap.
one is facing a problem and think
Retreating to the farmyard, the mouse proclaimed the warning. it doesn't concern you, remember
quot;There is a mousetrap in the house! There is a mousetrap in the -- when one of us is threatened,
house!quot; we are all at risk.
The chicken clucked and scratched, raised her head and said, quot;Mr. We are all involved in this journey
Mouse, I can tell this is a grave concern to you, but it is of no called life. We must keep an eye
consequence to me. I cannot be bothered by it.quot; out for one another and make an
extra effort to encourage one
The mouse turned to the pig and told him, quot;There is a mousetrap in
another.
the house! There is a mousetrap in the house!quot;
The pig sympathized, but said, quot;I am so
very sorry, Mr. Mouse, but there is
nothing I can do about it but pray. Be
RECREATION and
assured, you are in my
WELLNESS FOR
prayers.quot;
PERSONS WITH
The mouse turned to the cow and said
DISABILITIES
quot;There is a mousetrap n the house!
There is a mousetrap in the house!quot;
Wednesday, March 18, 2009
The cow said, quot;Wow, Mr. Mouse. I'm sorry for you, but it's no skin off
Governor’s Commission
my nose.quot;
on Disability
So, the mouse returned to the house, head down and dejected, to
57 Regional Drive, Concord, NH
face the farmer's mousetrap alone.
from 2:00 PM – 4:00 PM.
That very night a sound was heard throughout the house -- like the
Jill Gravink, Director of
sound of mousetrap catching its prey.
Northeast Passage will discuss
The farmer's wife rushed to see what was caught. In the darkness,
recreation and wellness for
she did not see it was a venomous snake whose tail the trap had
people with disabilities in
caught.
New Hampshire.
The snake bit the farmer's wife The farmer rushed her to the hospi-
This seminar is free and open to
tal, and she returned home with a fever. Everyone knows you treat a
the public. Contact Karen Geary
fever with fresh chicken soup, so the farmer took his hatchet to the
at (603) 271-4174
farmyard for the soup's main ingredient.
toll free at 1-800-852-3405 or
But his wife's sickness continued, so friends and neighbors came to
email her at karen.geary@nh.gov
sit with the farmer around the clock. To feed them, the farmer
Interpreter requests need to be
butchered the pig.
given two weeks in advance.
The farmer's wife did not get well; she died. So many people came for

12. NH Family Voices
12
Social Skills Groups
Redesignation of a Developmental Service
in Portsmouth
System Area Agency
Speech Connections Seacoast,
New Hampshire's area agencies have the primary regional responsi-
a speech and language assess-
bility of serving individuals who have a developmental disability or
ment and treatment facility in
acquired brain disorder and their families. Although on-going assess-
downtown Portsmouth is now
ments of various aspects of area agency services are routinely done,
offering social skills groups for
once every five years a comprehensive evaluation is completed by the
all ages.
State's Bureau of Developmental Services through a process called
quot;redesignation.quot; This review of area agencies is required by state For adults ( 18 years and older)
regulation and is intended to determine how well the area agencies are with social-pragmatic concerns,
meeting their responsibilities. there is a group on Friday nights
between 6:30 and 8:00. The
The redesignation review of an area agency is carried out by a team
target of this group is to learn
of Bureau staff. In assessing the area agency performance, the
practical ways to interact with
teams consider information from a number of sources. Input from a
others in the workplace and
variety of stakeholders, such as individuals with disabili-
community. Each session is six
ties, guardians, families, providers, staff members, Board
weeks long.
of Directors, is solicited. These comments from the
consumers and participants of the local service system For teens, there is a group on
represent a very important facet of the redesigna- Tuesday nights from 6:45 --
tion findings. In addition, the results of many 8:00 and includes a parent night
statewide surveys, interviews and reviews that where parents are expected to
are completed regularly out side of the meet with the therapist to
redesignation process are incorporated into a discuss what they can do to
final report which is submitted at the end of foster social success at home
the redesignation process. (These reports are and in the community.
public documents; so, anyone who is interested
For younger children, there is a
in the report may download it, or request a
group on Wednesday nights
copy from the area agency or the Bureau).
from 6:30 --7:30.
The criteria used for evaluating area agencies during redesignation
All groups are tailored to meet
have been adopted from the indicators listed in state rule He-M
the dynamic needs of the group
505. Eight quality indicators form the basis for the review and
and include a hands-on approach
agencies are evaluated on how well they are meeting these indicators.
to learning. Fun activities, com-
Recognitions of achievement, as well as recommendations for
munity outings and video taping
improvement, are included in each redesignation report.
are included in each group ex-
The redesignation review of an area agency culminates in a decision perience.
about whether a particular area agency should be redesignated, condi-
Groups are limited to a maximum
tionally redesignated or de-designated. The team that is responsible
of six students so please call to
for the review makes a recommendation to the Bureau director
learn more.
regarding the future status of the area agency. The final decision
Jocelyn Lister, MA/CCC-SLP,
regarding redesignation is ultimately made by the Bureau director and
at (603) 475-9549
is based on the totality of the findings regarding area agency
performance. www.speechconnectionsseacoast.
To download redesignation reports: com
http://www.dhhs.state.nh.us/DHHS/BDS/redesignation.htm

13. Pass It On 13
NH Council
Financial Assistance for Health Care
on Autism
Spectrum
Disorders United Health Care Children’s Foundation Medical
Assistance Grants
The New Hampshire Council on
The United Health Care Children’s Foundation
Autism Spectrum Disorders was
offers parents and caretakers up to $5000 in
created by the NH Legislature in
grants to help cover medical services to improve
2008 to provide leadership in the
the health and quality of life of their children.
Granite State’s efforts to im-
These grants can be used for such services as
prove healthcare, education, and
speech therapy, physical therapy, and psycho-
services for individuals with au-
therapy sessions; medical equipment such as
tism spectrum disorders (ASD)
wheelchairs, braces, hearing aids, and glasses;
and their families. The Council's
and orthodontia and dental treatments.
composition and charge are
described in HB 1634. Children up to age 16 and living in any of the 50
states are eligible for a grant. Families must meet economic guidelines,
Findings, recommendations, and
live in the US, and be covered by a commercial health plan. Visit the
principles published last spring by
United Healthcare’s website for more information. www.uhccf.org
a previously established commis-
sion on Autism Spectrum Disor-
ders are to serve as a guide for Disabled Children's Relief Fund
the Council’s work.
Disabled Children's Relief Fund (DCRF) provides
The New Hampshire Council on assistance to obtain wheelchairs, orthopedic
Autism Spectrum Disorders has a braces, walkers, lifts, hearing aids, eyeglasses,
new website designed to share its medical equipment, physical therapy, and surgery.
proceedings, contact information, Blind, Deaf, Amputees, and children with Cere-
calendar and other business with bral Palsy, Muscular Dystrophy, Spastic Quadriplegia, Encephalitis,
interested members of the Rheumatoid Arthritis, Spina Bifida, Down's Syndrome, and other
public. HB 1634 and the Autism disabilities receive assistance. DCRF focuses special attention on
Commission Report can also be helping children throughout the U.S. that do not have adequate health
found on the website. insurance. To learn more and download an application go to:
www.dcrf.com
www.nhcouncilonasd.org
The HIKE Fund, Inc. (Hearing Impaired Kids
Endowment)
The purpose of the Fund is to provide hearing de-
vices for children with hearing losses between the
ages of newborn and twenty years whose parents
are unable to meet this special need financially.
To learn more and download an application go to:
www.thehikefund.org

14. NH Family Voices
14
Stimulus Package Offers
COBRA Subsidy Eligibility
NH Family Voices has just learned that individuals
who lose their jobs between Sept 1, 2008 and
December 31, 2009 will have some help from the
stimulus package towards their COBRA payments.
When you lose your job your employer must offer
you the option of COBRA to maintain your health
Accessing insurance. This can be extremely expensive and
WEB RESOURCES without a job, impossible for many.
More and more we have been including web In the stimulus package the government agreed to
resources in our newsletter. pay 65% of COBRA premiums for individuals who
have lost their jobs between Sept 1, 2008 &
Please remember if you DO NOT have access to
December 31, 2009. The subsidy is limited to nine
these web based resources and information,
months and available only to those without another
NH Family Voices would be pleased to send you
source of group health insurance. Individuals who
whatever information you would like printed out.
lost jobs after Sept. 1, 2008, but who didn't sign up
Just call us at: for COBRA at the time will get a second chance to
do so. Employers must send these former workers a
1-800-852-3345 X 4525
notice by mid-April. The former employees will have
or (603) 271-4525
60 days after sign up.
Eligibility for subsidies doesn't depend on income.
But with income above a certain level, you'll be
responsible for including the subsidy amount on
Homemade Baby Wipes your income tax return.
The subsidy money won't come directly to you; it'll
Take a roll of quilted Bounty
be sent to your employer in the form of an offset
and cut it in half (an electric
against payroll tax liabilities. You send in your
knife works great).
payment for 35 percent of the premium and the
Put in a container that has a government will credit the remaining 65 percent
tight seal. of the premium amount to your former employer.
Mix 2 cups of boiling water with 2 Tablespoons of
For most people, the subsidies will start March 1.
baby oil. Pour over the paper towels and seal.
You won't receive reimbursement for any COBRA
payments you've paid between Sept. 1 and that
Let set for 30 minutes and then turn the paper
date. If you have questions, call your former
towels.
employer, find out who is administering COBRA
Let it set for another 30 min.
benefits and contact them. If that doesn’t work
try the US Dept. of Labor at 866-444-3272 or the
And then pull out the cardboard insert. Pull the
NH Insurance Department at 800-852-3416.
first one from the center and your ready to go.

15. Pass It On 15
Before I was a Special Parent...
VACANT SPELLS were related to real
Before I was a Special Parent… estate
SPASTICITY was a good Jerry Lewis movie
The IDEA was just a little bright thought
And GUILT came from something I did, not
This was written by Kathy Hunter. Her daughter Stacie was the
something I didn't do
first girl in the USA diagnosed with Rett Syndrome by Dr. Andreas
Rett back in 1983 in Baltimore. She went on to be the founder of Before I was a Special Parent...
IRSA (International Rett Syndrome Association) now know as IRSF BALANCE referred to my checkbook
(International Rett Syndrome Foundation). IRSA was instrumental CIRCULATION was about my hometown
in the discovery of the gene that causes Rett Syndrome. newspaper
HYPERVENTILATION was limited to
Before I was a Special Parent...
Rover's greeting
I thought RETT SYNDROME was something you got from watching
And CURVATURE was very sexy
too many reruns of Gone with the Wind that is, after you recovered
Before I was a Special Parent...
from Scarlet Fever
COMMUNICATION was about saying all
Before I was a Special Parent...
the right things
PT meant part time
IEP was pronounced IPE
OT meant over time
INCLUSION meant tax added
BRACES were something you wore on your teeth
And IMPACTION was a speedway crash
And a WIDE GAIT was attached to my fence
Before I was a Special Parent...
Before I was a Special Parent...
My other children were called kids, Not
I actually had a savings account
SIBLINGS
I didn't know that I should have invested heavily in paper towels,
They played together, not INTERACTED
Attends, Velcro and applesauce
And my husband's three most important
Before I was a Special Parent... words before drifting off to sleep were I
RIGIDITY was my anal-retentive boss Love You instead of DID SHE POOP?
SELF-INJURIOUS BEHAVIOR was what I did on a night at the
Before I was a Special Parent...
casino
I thought shoes with VELCRO were for
MOOD SWINGS came only with PMS
lazy people
And VALIUM was used by high-strung socialites
ADAPT meant telling someone to get over
Before I was a Special Parent... it already
I thought BUTTONS went on your blouse, not your belly And ASPIRATION meant ambition
GENES were labeled Levi or Guess
Continued on page 18
And MUTATIONS were confined to the Incredible Hulk
Before I was a Special Parent...
I thought the IRSA was the IRS Association
HANDWRINGING was what you did after an audit
SEIZURE was what they did when you failed
And RESIDENTIAL PLACEMENT was a jail term
Before I was a Special Parent...
STATUS was something you earned, not dreaded
And when you got it, MOBILITY was usually upward
A FINE MOTOR ACTIVITY was taking the Chevy thru the car wash
And a GROSS MOTOR MOVEMENT was the universal one-finger Kate and Stacy today
salute http://www.retthelp.org

16. NH Family Voices
16
Our child has a chronic illness. How can we help her
cope with this throughout her life?
When you first learn that your child has a disability or a chronic disease, the
news is often unexpected and can seem devastating. Many families experience a
sense of powerlessness at the prospect of dealing with an unexpected illness and
facing a future filled with unknowns.
Knowledge is power
As a first step to coping with your child's special needs, find out as much as you
can about her condition and its care. The more information parents and children
have, the less frightening the present and future will seem. Knowledge is
empowering. It can help both you and your youngster feel more in control of,
and less a hostage to, the condition you both must face. Information will also
help you guide your child - and serve as her advocate - through the potentially complicated medical-care
system.
The type of information you convey to your child should be appropriate for your child's age. You can gauge
this best by listening to her questions. Studies show, for instance, that kindergarten-age children typically
view illness as quite magical: One child, when asked quot;How do you get better from an asthma attack?quot; simply
responded, quot;Don't wheeze.quot; Young children who have diabetes may sometimes attribute their illness to
eating too much candy. Some youngsters believe they have become ill and been hospitalized as punishment
for disobeying their mother or father.
Beginning at about ages 10 to 12, children begin to grasp the complex mechanisms that can contribute to
disease. By the fourth grade, children tend to believe that germs cause all illness. These older children may
be capable of understanding more straightforward information about their disorder. Remember that as
children grow up, their ability to understand information and assume responsibility for their own care
increases. Every year or so, someone should check out what they understand about their illness, fill in the
gaps and correct misperceptions. All too often, the explanations stop at the time of diagnosis.
Helping your child cope
Stress is a part of life. It motivates us to succeed, but it can also interfere with life's joys and accomplish-
ments. Children with chronic illnesses often deal with more stress than other youngsters. For example, they
may have to cope with an imperfect body, frequent hospitalizations, painful injections, surgery, or even
premature death. A child with kidney disease who requires dialysis three times a week faces predictable and
repeated periods of stress. A youngster with cancer, who must undergo repeated chemotherapy, copes with
the fears and anxieties of each approaching treatment. A child with epilepsy may feel apprehensive about
the possibility of having another seizure. Unfortunately, there are no simple ways to help your child avoid
these stresses. Here are some suggestions that may make the situation a little easier.
Listen to your child. Whether she is feeling sadness, frustration, or rage, it is helpful for her to
express her emotions. She should feel that she can share her thoughts and fears without your

17. Pass It On 17
overreacting or becoming upset. Ask how she is diabetes, you may have to test
feeling. Be available and supportive. Listen not her blood sugar level and make
only to what your child says, but also try to sure insulin injections are given
hear what is left unspoken. regularly during her younger
years. If she requires a special
Inform your child about what lies ahead.
diet, you will need to supervise
Anxiety is often based on the unknown or on
food choices and eating habits
inaccurate presumptions about the future. Find
closely. At the same time,
out what your child does and does not know.
watch for signals from her that
Explain exactly what will happen during an
she is able to assume greater
upcoming doctor's appointment or hospital visit;
responsibility, and help her take on more of the
if you are unable to answer all your child's
management of the illness little by little as she
questions, both of you should talk to the
grows up.
doctor. Do not expose a child to a frightening
procedure unless she has been informed of it Some children avoid accepting more independence.
beforehand. Conversations with other children Families may inadvertently foster dependency
who have gone through the same experiences because they find it easier to maintain responsibil-
can be invaluable. ity for their youngster's care, rather than teaching
the child to perform certain tasks and relying on
quot;Rehearsalquot; can help children cope with
her to do so. Also, these children (like most chil-
frightening situations. Many hospitals can now
dren) may enjoy being the object of their parents'
arrange for youngsters to spend time in the
special attention. They may relish having certain
children's ward before they undergo surgery
tasks' performed for them, and may resist taking
or other procedures. These visits can famil-
responsibility.
iarize children with the hospital setting and
what to expect. It is critical to help your child come to terms with
her health condition and accept appropriate respon-
Encourage your youngster to spend time with
sibility for caring for herself. Do not deprive your
other children with a chronic illness.
child of the important and rewarding experience of
Frequently talk about the illness or condition mastering day-to-day tasks; it can instill pride and
so that your child feels comfortable being open self-confidence that can prepare her for adult life.
about it. Praise her efforts at assuming responsibility, and
applaud yourself for having the wisdom and courage
Emphasize your child's strengths --
to let her take these very important steps.
the things she can do well despite the
condition.
Your pediatrician can help
Help your youngster feel that she can be in Discuss with your doctor your concerns and the
control of some aspects of her situation. Try limitations you think are reasonable for your child.
to find choices that can be given to her, such as Using your physician's input, develop some guide-
which arm to have blood drawn from, when a lines for sensible restrictions while also encouraging
procedure will occur, or what reward she will your child to participate in a diversity of activities.
get for cooperating. Parents need to recognize their children's changing
needs and to plan for them. It is also important for
Independence parents to be educated and up-to-date about their
Children's capacity for independence varies from child's illness and about new treatments and their
illness to illness and child to child and will steadily effects.
increase with maturity. If your youngster has
Continued on page 18

18. NH Family Voices
18
Ryan Judd
Our child has a chronic illness...
Music
Continued from page 17
Therapist
Most children with chronic illnesses do well in
school, develop appropriately and achieve their What is Music
goals in much the same way that other children do. Therapy?
Most are healthy children who happen to have a
Music therapy is an
chronic illness. While their illness may create
established health care
certain difficulties, with the support of their par-
profession that uses music to
ents most lead effective and exciting lives and grow
accomplish therapeutic goals. In a typical session,
up to become productive adults.
the client and therapist create musical experiences
Published online: 6/07
through instrument play, movement to music, sing-
Source: Caring for Your School-Age Child: Ages 5 to 12 (Copyright
ing, vocalizing, and song-writing. These experiences
© 2003 American Academy of Pediatrics) To order a copy of this
book visit the AAP Bookstore. are focused on speech, occupational, physical,
academic, and/or behavioral goals. Clients do not
The information contained in this article should not be used as a
substitute for the medical care and advice of your pediatrician.
need any musical skill or experience to participate
There may be variations in treatment that your pediatrician may
in and benefit from music therapy.
recommend based on individual facts and circumstances.
Ryan Judd is a board certified music therapist.
He has a master’s degree in Music Therapy and a
Before I was a Special Parent… bachelor’s degree in Psychology, with an emphasis on
Continued from page 15 Child Development. He has been working as a music
BUT ALSO therapist with children, adolescents, and adults with
special needs for 10 years. In addition to working
I didn't know that SORROW never leaves you
one on one with clients, Ryan also leads groups
where you found it
focused on the development of social skills.
I didn't know unbridled JOY could come from
For more information call (603) 793-1941.
heartbreak
E-mail: ryanjudd33@gmail.com
I didn't know that my child would be my TEACHER
Web: www.ryanjudd.net
I didn't know the meaning of UNCONDITIONAL
LOVE
Fatherville
I didn't realize that the little stuff is really THE
BIG STUFF It's for fathers… by fathers and about fathers and
fatherhood. Fatherville has it all! It has information
I didn't realize how well someone could
and resources for Dads of children with special
COMMUNICATE without words
needs, teens, first time fathers, home schooling,
I didn't know that milestones are not as important
legal info, bulletin boards, poems, humor and a
as SMILESTONES
newsletter. So, if you are a father, a step-father,
I didn't know that my child would TOUCH the a male role model, or just a man who knows a kid
world not from what she has done, but from what who needs help then Fatherville is for you.
she cannot do Fatherville exists soley as an online organization.
I didn't know the POWER of her powerlessness
http://www.fatherville.com
I didn't know that I have so much to LEARN

19. Pass It On 19
Moving Spirit, LLC
BOOK
The Center for Yoga, Dance, & Wellness
DONATIONS
Creative Kids Yoga® Class for Students
with Special Needs
Wednesdays from 4:45-5:30pm
Located at Moving Spirit studio on Merrimack/Nashua line
Ages 8-14 with parent or caregiver
April 1st- June 10th
Have fun with basic yoga postures and movement concepts that build
strength, coordination, flexibility, and balance! Experience the joy of
movement in a welcoming class setting that offers an opportunity for
each student to grow in confidence and body awareness. Learn to ease
stress with simple breathing exercises and relaxation poses. Do you have books gathering
dust on your bookshelf?
Wear comfortable clothing, bring a water bottle, and we provide the
rest. Appropriate for ages 8-14 with a parent or caregiver present. Are any of them on a specific
Class size limited to 10 students. Please pre-register by calling: (603) diagnosis, educational issue, or
886-7308. (Registration form posted on website.) children’s book that address a
life issue such as friendship,
About the Instructor: Michelle is a life-long creative dancer and
divorce, or illness?
artist who loves the outdoors. She designs and teaches custom yoga/
dance classes for schools and other venues and facilitates adventure If you no longer have use for
programs for all ages. She has worked in a variety of educational, these books but are not sure
wilderness, and movement programs with children, including one-on- what to do with them, NH Family
one care for individuals with special needs. Michelle is a graduate of Voices will take them and share
Pomona College in California and is a 200 hr certified Creative Kids them with other families,
Yoga® Instructor professionals, and children.
www.movingspirityogadance.com/index.htm Call: 1-800-852-3345 X 4525
Positive Parenting
Compliment and encourage your child every day.
Smile a lot in your home.
Always have a listening ear and feeling heart with your child.
Tell them you love them as a person.
although there may be a behavior you dislike.
Understand and try to meet you child’s need for attention in a
positive way to reduce the need for negative attention.
Each child is an individual. Treat each child
as being special and unique.
If your child fails at something, remind him of all his successes
and that he will succeed again.

20. NH Family Voices
20
I WOULD LIKE TO RECEIVE “PASS IT ON”... MJ Madison
This is a FREE publication. Return to NH Family Voices
129 Pleasant St. Thayer Bldg.
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