Becoming an Expert Advocate

Liveblog

Carol Greenburg (Executive Director of New York Special Needs Consulting, is
an adult with Asperger's Syndrome)
Kristina Chew (mother of 15-year-old son with autism, blogs at www.care2.com)
Tanis Miller (www.attackoftheredneckmommy.com)

Shannon Sullivan, safe kids worldwide: keeping kids safe can be complicated. That's where Safe Kids comes in. Example, medication. Today, more kids are seen for accidental medication exposure than any other accident. (plays video: Safe Storage, Safe Dosing, Safe Kids on
YouTube) www.safekids.org


Instead of leading with stat: 60K kids are rushed to ER after taking
medications on their own. We used an image with 4 buses to convey that
4 bus loads of kids are rushed to ER each day by taking meds on their
own.

It takes time for people to change their behavior. If even they know
what's best, they still don't do it unless they've heard many times.

Parents will do anything to protect kids. We just have to get our
message out. We have a lot of work to do. We could use your help. Take
home lessons and visit www.safekids.org. Friend us on Facebook. Share
awareness messaging campaigns with your friends. Together we can
prevent accidental injuries to kids. Doesn't mean we have to
bubble-wrap our kids. We just need to be safe and explore. Thank you.

Carol: When people walk out of session today, what's the single most
important thing a parent of a special needs child needs to hear?

Tanis: Education. You can't advocate if you don't know what's available
and how to ask for it.

Carol: Think rights and know your responsibility. At first, you think the
experts know everything and you know nothing. You have to rely on
them. You get other that pretty quick. You learn your rights and the
madder you get. It's my responsibility to be sure that my child can
grow to achieve what he is supposed to achieve. I can imagine my child
won't need help throughout his life. He can't have a conversation that
you and I would recognize. He needs one-on-one right now. In New York,
they don't have one-on-one options. We had to sue. We aren't litigious
people, but in order to try and get reimbursed for $90K tuition we
have to sue the city. No one wants to be in that room. But we have to
do what we have to do because the system is set up that way. I have
expertise and know what it takes to educate. You, the teachers, are
the resources that I rely upon. We can work in partnership to make
sure my son has the best quality of life possible. Show respect for
people's expertise. If you show respect, and you command rather than
demand, and that you are an expert with your child, your position will
not be diminished.

If you can't afford to pay for private attorney, go to an agency, walk
to the agency with a box of the bad stuff from your kids' schools and
say, "help me!" Go to the office. Make noise by actually going to the
office.

Audience Member: www.copaa.org can provide help and resource.

Carol: www.wrightslaw.com does a great blog started by Pete Wright who
was a police officer with a special needs child. Think rights, talk
responsibility.

Kristina: Avoid catastrophic thinking. Learn to manage what's possible. I
think it's important for dads to go for help with going to agencies. I
was terrified when my son was young. Avoid thinking about what's going
to happen to your child when you're gone. As you age, you have health
issues. Parents with challenges of their own makes for a lot. I'm the
kind of person who believes in looking my fear in the face and that
makes all the difference.

Carol: I was raised with a brother, who passed away, my brother, I
suspect, he would be identified as autistic. As a sibling, I felt like
a caretaker as a sibling since my autism was much less visible. I
ended up for more responsibility with my older brother. I encourage
you to work that into your future plans and guardianship. Family is
responsible for each other, but be sure your other children aren't
buried and they have support they need to care for your special needs
child later.

Audience member: Do you envision any way through collaborative funds
that we can move the needle and make changes?

Carol: Everyone should talk to everyone. There's a lot of talk about
vaccines and big pharmaceuticals. You have to talk to the people you disagree with the most.

Tanis: Secret to advocacy is being able to communicate effectively. Learn
the system.

Audience Member: Is there potential for partnership?

Carol: Successful advocacy is learning principled negotiation.

Kristina: For the medical piece, my son is helped a lot with medication.
It's tough, but think about how these things play a role in advocacy.
Be open to being wrong. You will learn processes by making mistakes.
Pharma issued is important to consider. It's a way to open some
avenues for kids. It means a lot that my son can live at home with us.
In our case, we've been able to keep our son at home with medication.
I think that blogging I have been in touch with others in different
situations. There is a way to make things better. Think about hope.
You feel in the dark often. Somehow things open up. (blogs at
www.autism.typepad.com)

Carol: Follow the evidence. Science is most likely to point you in a
positive direction so that you're not spinning your wheels.

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