grandparents and duchenne -...

Grandparents

and

Duchenne

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Anita Bullers Grandson with Duchenne (9 years) IT/Energy Profession Texas [email protected] Gail McVicker Two grandsons with Duchenne (5 and 9 years) Photojournalist/Teaching Profession Pennsylvania [email protected] © Copyright restrictions – please contact Gail McVicker

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Why we are doing this: Grandparents play an unique role in the world of Duchenne. Three years ago when Duchenne first entered our lives something like this would have been helpful. We hope to communicate ideas about supportive and constructive activity especially for grandparents. It’s a start – it’s not perfect and by no means complete. It’s something to build on.

Intro

mailto:[email protected]

mailto:[email protected]

Contents Intro –

Helping WITHIN the family - Ask, listen and respect – Respect medical decisions – Privacy issues – Provide encouragement or just listen Educating ourselves – Action – Financial support – Babysitting – Family outings

Helping OUTSIDE the family – Awareness – Advocacy – Fundraising – F.A.C.E.S.

Helping YOURSELF Resources – Your health – Rest – Rejuvenation – Airplane-oxygen mask – Different styles – Grace – Humor – Get involved

Conclusion

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© Copyright restrictions – please contact Gail McVicker

Intro

Grandparents have different ways of

standing up to Duchenne

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Intro

Reasons grandparents fight for our boys because we can because our boys can’t because we can’t not (fight for our boys)

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Helping WITHIN the family

Gail e-mailed Pat Furlong when she first found out that her grandsons had Duchenne three years ago. In one message, she inquired:

Q: Is there anything particular for the emotional part of it?

Pat responded:

A: The way for you to survive emotionally is to get involved in the ways you feel most comfortable, whether that is by helping the parents, entertaining the boys, contacting your congressman/senators about Duchenne, fundraising . . . You will learn things you never thought you would learn. You will not feel helpless or alone.

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Ask Listen Respect Encourage

How can grandparents help?


Help WITHIN

the family

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Respect what parents share – Provide encouragement and/or just listen . . .

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Respect parents’ decisions (even if you’d do differently)

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Outings Babysitting Sleepovers

Movies Just your company

Share interests Let them know you’re in their corner

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Respect, listen, support and

I tried to teach my child with books. He gave me only puzzled looks. I tried to teach my child with words. They passed him by often unheard. Despairingly, I turned aside. “How shall I teach this child?” I cried. Into my hand he put the key. “Come,” he said, “play with me.”

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play . . .

Never underestimate playfulness and fun.

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Grandfather is a woodworker and makes renovation equipment (steps, etc.). Grandson helps with the sanding. Play/engage with grandsons. Helped financially for accessible van – computer equipment. Help with grandson’s care when parents have work obligations. Provide “breaks” to the parents. Storming Capitol Hill to advocate for grandsons. Have grandchildren stay overnight. Make their house (grandparents’) wheelchair accessible – ramps, bathroom, etc. Remove throw rugs. Offer help without judgment or any strings attached. Listen – be a sounding board – emotional support.

A few things parents have found helpful

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Focus on grandson’s abilities – not disabilities Nurture grandson’s interests, hobbies and talents If live nearby - help with little things – mending, housework, errands If not nearby - research resources – medical, mobility equipment grants, camps, Make-a-Wish, etc. Chauffeur Be a sounding board – just listen Ask frequently – “How can I help?” Be upbeat – it’s contagious AND IT MAKES YOU LOOK YOUNGER.

More helpful things parents appreciate --

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Those that can help out

with family

expenses from

the heart

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Educating Ourselves

“Duchenne” for starters –

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There’s TONS of info out there Parent Project Muscular Dystrophy

Muscular Dystrophy Association Cure Duchenne

Action Duchenne (England) Darius Goes West

Charley’s Fund Jett Foundation

Endless supply on the World Wide Web And more . . .

Note: If you don’t have computer skills you can contact

organizations by phone or letter and ask them to send you information.

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Awareness


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Become aware yourself and then

SPREAD AWARENESS WITHIN the family and OUTSIDE of the family.

Know about it . . .

If people don’t know about Duchenne --they can’t relate – or help.


Help OUTSIDE

the family

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Helping OUTSIDE the family


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I’m always awestruck by the grandparents that storm Capitol Hill to advocate for grandsons. They are so effective because they are distraught for their own children as well as their grandchildren.

To them it is like a double whammy. - A Mother

Advocacy – Visit representatives annually in

Washington, D.C. for federal funding and raising awareness.

MAKE RELATIONSHIPS. PHOTOGRAPHS HELP THEM TO

REMEMBER.

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Know anyone famous who might champion our boys?

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“Treatments and a cure seem tantalizingly close but they

will not appear without further support and funding.”

English Actress Helena Bohnam Carter The Kings Speech and Harry Potter

Patron of Action Duchenne


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Funding from government and other sources for research/quality care is where we pin our hopes.

Fundraising – what’s your style?

• Coach to Cure • Run for our sons • Social events • Products (books) • Coin jars • Amazon.com • STIR (give monthly) • Donate • Write an article

or a grant • Prepare something for

a raffle? • Something new?


EVERYTHING HELPS!

Large scale? Medium scale? Small scale?

F.A.C.E.S. – local support in some states NJ, AZ, IL, N+S TX, CO+WY, MI, N. California and Pacific NW

FACES is an acronym that stands for Families, Advocating, Connecting, Educating, and Supporting.

FACES Goals Fundraising: To support PPMD research, advocacy, care, and education programs.

Family Mentoring: To help local and regional families better understand the diagnosis of Duchenne or Becker muscular dystrophy.

Grassroots Outreach: To support national awareness and advocacy campaigns.

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We need more states involved for Advocacy and F.A.C.E.S.

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Needed: More state representation

• Advocacy – Many states are not represented when we advocate in Washington. This means state senators and representatives will not hear our personal stories and appeals for support. Without our input they likely won’t vote for our cause. It is the face-to-face contact and the stories we tell about how Duchenne has affected us that leave an impression and influence their support. Photographs help.

• If you can’t travel to Washington, D.C., visit your local office and establish a relationship. Reach out to Duchenne families in other states that are not represented and gather their information so someone else can deliver it for them. Send out letters to friends and relatives who are constituents in different areas to send to their reps for more votes to help our boys.

• F.A.C.E.S. – Offers support and counters isolation. To date only the following states have F.A.C.E.S. groups. NJ, AZ, IL, N +S TX, CO+WY, MI, N. CA and Pacific NW

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Reach out to others . . . Duchenne knows no ethnic, economic, geographic or social boundaries.

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There are boys WORLDWIDE with Duchenne in families that may be isolated and cut off. It can be a lonely path – we need each other.

Fortitude and

self-care for

grandparents

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Fortitude and self -care

Fortitude + self-care for grandparents

• Heed what you are told in airplanes – your oxygen mask must be

attended to first, before your child’s, or you may be incapacitated.

• Be vigilant about your own wellness

• Stay in touch with your friends and activities

• Use your unique talents whether it be babysitting, fund-raising, community awareness . . .

• Consider getting counseling

• Find rejuvenating activities

• Rest

• Humor

• Grace

• Positive thinking

• What CAN I do? Baby steps.

• Get involved

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A few resources for

insight and inspiration • Informative books

– Authored by parents

– Authored by our young men

– Inspirational books

– Fundraising books

• DVDs

• You Tube

• Social Media

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Some supportive and informative books

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Some books written by parents

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Books authored by young men.

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Counseling Advice from grandfather Dan

Since 1985, Dr. Daniel Gottlieb has been hosting "Voices in the Family," an award-winning mental health call-in PBS radio show aired on WHYY, Philadelphia's local public radio station. In 1979 he was in an automobile accident which left him paraplegic. He authored Letters to Sam – Sam is his only grandchild who is autistic. When I learned that my grandsons had Duchenne I met him for one session at his office in Camden, NJ. In all of this devastation and heartbreak, he gave me some encouraging words to cling to: I asked:

“Where will we ever find fun again – will we ever experience joy?” He responded:

“It is all around you. Pay attention . . . and there will be lots of white hot tears.” With tears and heartbreak I have been able to see and experience the joy all around me. It has counteracted the worry and despair. How prophetic was Dan Gottleib’s response. -- Gail McVicker 36


Duchenne strikes WORLDWIDE

Many turn to their individual faith

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Grandparents have

powerful and

different styles when it comes to

standing up to Duchenne.

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Like a welcome summer rain, humor may suddenly cleanse and cool the earth, the air and you.

Langston Hughes

Humor


Humor – different styles

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If you hold a cat by the tail, you learn things you cannot learn any other way. Mark Twain


Give yourself the gift of rest and rejuvenation

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Take rest; the field that has rested produces a beautiful crop. --Ovid


Strive for balance

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A few

concluding points

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Conclusion

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Spread

AWARENESS

Know about it . . .

If people don’t know about it – they can’t help.

Conclusion

There’s strength in numbers –

GET INVOLVED

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Conclusion

Can you help in the fight for our boys?

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Conclusion

Grandparents are a powerful force.

Time is of essence

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Conclusion

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Conclusion

Conclusion Intro Helping WITHIN the family - Ask, listen and respect –

Respect medical decisions – Privacy issues – Provide encouragement or just listen Educating ourselves – Action – Financial support – Babysitting – Family outings

Helping OUTSIDE the family – Awareness – Advocacy – Fundraising – F.A.C.E.S.

Helping YOURSELF Resources – Your health – Rest – Rejuvenation – Airplane-oxygen mask – Different styles – Grace – Humor – Get involved

Conclusion

49 ©Copyright restrictions – please contact Gail McVicker

Conclusion

Grandparents

and

Duchenne

THE END

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You Tube – A dedication to all the kids with special needs.

Song: “Footprints in the Sand” sung by Leona Lewis http://www.youtube.com/watch?v=N2T-4N8BR2s

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Footprints in the Sand

http://www.youtube.com/watch?v=N2T-4N8BR2s




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