how – part two

So where was I?

Ah, yes. My friend, Cole* had reappeared in my life after some obscene amount of time – that I can’t keep saying because it makes me feel OLD, so we’re just going to go with, “Oh, look, there’s Cole and he’s all grown up.” Deal?

Cole had made it clear that he was on a personal mission to learn more about the autism community and to figure out how to best leverage the resources at his disposal in order make life better for our families. And he was asking ME to help. So, um, no pressure. Right.

We set up our first meeting over lunch. The immediate goal was to give Cole an overview of the autism community – a daunting task in and of itself – and then to talk a little bit about the political landscape, the challenges we face both internally and externally, and to come up with a plan of action.

I knew that my perspective would never be enough. As we all know, when you’ve met one person with autism, you now know one person with autism. No one member of this community is representative of the whole. We have dramatically different (and sometimes even contradictory) needs. Our challenges are not the same. Our most immediate priorities vary radically. I was going to need help.

Since Cole was looking to start with the parental perspective, I sought out as many parents as I could. I did my best to reach out to as diverse a group as possible. And let’s be honest; I didn’t have to search too far to find people with very, very different views on what is important. I made a point of asking people both within my comfort zone and far, far outside it.

The following e-mail went to just shy of fifty parents.

Dear fellow autism parents,

What if an old friend that you hadn’t seen since college contacted you on Facebook?

What if that old friend sent you a message saying that he’d come across your blog while searching for autism resources.

What if he told you that he had been looking for a way to contact you ever since?

What if you then talked to that old friend and he told you that he’s on a personal mission to better understand the needs of the autism community?

What If he then asked if you’d be willing to sit down over lunch and help to educate him about the issues that we face every day as parents of children on the spectrum?

What if your friend, as it turns out, is the State Director for a very powerful senior US Senator?

What if he is asking these questions because he feels like he is in a position to HELP but isn’t sure where to begin?

Well, if it were me I’d e-mail some friends whose opinions I respect. I’d ask them for their perspectives on what is most important, most pressing, most direly needed in our community.

I’d ask them to tell me IN SPECIFIC TERMS what they would like our government to do for them and their children (and adults on the spectrum!) RIGHT NOW.

So, um – here I am.

Asking.

Cause lunch is next Wednesday.

What would YOU say???

Best,

Jess

As the responses poured in, themes began to emerge. The following is a sampling of the topics brought up, many of which were urgently repeated again and again throughout the e-mails. (Please note: they are listed here in no particular order. These are not ranked nor prioritized in any way; they are simply written in the order in which the e-mails appeared in my inbox.)

**

Universal, equal, non-discriminatory health insurance coverage

Full funding of IDEA (the Individuals with Disabilities Education Act)

Training of first responders and law enforcement officials

Support for Early Intervention

Transition services and support into and throughout adulthood

Creation of and support for appropriate adult housing

Job training, coaching and ongoing support

Incentives for schools to become structurally appropriate for all learners

Federal restraint and seclusion legislation

Mandated reporting of bullying

Respite care

Universal access to augmentative communication devices

Tax rebates for homeschoolers

Independent research into environmental causes of autism including but not limited to vaccines

Studies of biomedical treatments

Broadening the scope of autism treatment beyond behavioral intervention

True access to FAPE (Free Appropriate Public Education)

Curricular reform

Creating a culture of acceptance

Broadening education to focus on social, behavioral and emotional intelligences for ALL children

Reauthorization of CAA (Combatting Autism Act) (ed note .. and maybe a name change?)

Passage of the ABLE Accounts Act (Achieving a Better Life Experience) to enable parents to save for disability expenses

Immediate help for military families

Empowerment of the NIH (National Institute of Health) to launch an Autism Project

Physician training and ongoing education

Increasing public awareness of the early signs of autism

Provision of reputable, unbiased information about various interventions and treatments

Regulation of autism treatment providers

Education and ongoing training for teachers

Peer mentoring in schools

Education in the schools regarding developmental differences

Care coordination between schools, mental health providers and medical services

Research into longitudinal measurements of staging of interventions over time

Centers of excellence in each community across the country for education, training, socialization, coordination of services

Unification of the autism community’s various advocacy groups

Penalty-free access to 401k monies

Research into regression into autism

Coverage of and access to vital interventions such as social skills groups

Adequate coverage of ongoing occupational and speech therapies

Coverage of Neuropsych exams

Disallowing funding from pharmaceutical companies, both politically and scientifically

Holding Obama accountable for his campaign pledge to allocate one billion dollars to autism services, research and treatment

Maintaining federal health care reform provision of CAA

Support for AFAA (Advancing Futures for Adults with Autism)

Address 80% unemployment rate of autistic adults (ed note: depending on who you talk to, this number might be very light. And of those who are technically employed, a staggering number are dramatically underemployed.)

Access to SSDI benefits

Changing the qualifications for adult disability – threshold is currently based on IQ, recently lowered from seventy-five to seventy with no regard to social deficits.

**

I collected the responses and did my best to clean them up and make them relatively easy for Cole to digest. And though I did what I could to edit them for him, what I tried to leave in were the Thank You’s. I believed that Cole needed to hear the gratitude. He needed to see the constant refrain – “Please tell your friend how grateful we are that he cared to ask.”

And so it was that I showed up to lunch with a man who I hadn’t seen in twenty years and proceeded to hand him an improbably thick pile of papers. “It’s great to see you,” I said. “And I’d like to introduce you to some friends.”

To be continued …

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28 thoughts on “how – part two

  1. I hated waiting to find out “Who shot JR”, and this is damn near killing me! Skip the hugging, I wanna…..okay well maybe not that, but….

  2. Thank you. I needed to see this post today. As I write yet more checks from my 401K to pay the attorney to make sure Boy Wonder gets FAPE and the therapists to make sure he continues to progress. And as I sit and worry hourly about what the future holds for him.

    Thank you.

    Love,

    Jersey

  3. You and Cole are a phenomenal team here. This has amazing potential. One more giant step for Autism awareness and the need for change.

    Love you,
    Carrie

  4. What a phenomenal opportunity, and I can’t think of a better ambassador for change to facilitate it. Throw in “descend the Grand Canyon” and “thin thighs”, and you’ve just composed my bucket list. Can’t wait to see how this goes!

  5. God said, “Your task is to build a better world.”
    “How?” I replied. “This world is such a large vast place, and there is nothing I can do.”
    But God, in all His wisdom, said, “Just build a better you.”
    -Author Unknown

    Jess, You are building that better world. God Bless and Keep you.

  6. and I’d like to remind you of this quote.

    Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

    Margaret Mead

    You are changing the world.

  7. How one mom singlehandedly united the autism community and got help for us all. My son’s needs are so different than your daughter’s needs (but also very much the same). You do a wonderful job being the voice for many. Blog on!

  8. I know there will likely be people who will scoff at the notion that these efforts will come to naught. Those will be people who don’t know you personally or who haven’t seen the kinds of things you can accomplish. People who will only see the grief and anger in their immediate path. To those people I would say this:

    It may not happen immediately or on a sweeping scale, but change IS coming. It’s coming from the efforts of people like DOAM (and so many other amazing parents I know) who are out there fighting and advocating. From every single one of us who perpetuates HOPE while not denying the existence of grief or frustration. From every single person who FIGHTS for their individual child’s rights and needs to be honored and every single person who fights for the good of families…we already ARE changing the world. Just look at the number of states which are finally passing autism insurance mandates. It takes the same number of steps to journey that thousand miles whether you run or walk. NOT GIVING UP IS WHAT GETS YOU TO THE JOURNEY’S END.

    I can’t wait to read about what more has transpired since that first lunch meeting with Cole.

    Oh, and naysayers…just remember how everyone told Martin Luther King, Jr., Rosa Parks, and (now) U.S. Congressman John Lewis the change they sought would never happen. They didn’t let that deter them.

    • yeah, what she said :-) Can’t wait to hear more! And that list…is staggering. It should be List with a capital L. Thank you for helping my son and so many other kids and adults out there.

  9. YAY! I am so excited to be reading this. I’m now wanting to find out who the “Cole” person is for each of our Reps and Senators from Nebraska.

    You go girl!

  10. I’m new here and just saw this wonderful blog (along with several others)! Thank you Cole for listening! And thanks Jess for letting voices be heard! So glad I found this!

    • ian, i tried to send you an e-mail, but it was bounced back. please check the address that you left. i’m happy to try again. -j

  11. Pingback: April’s Blue Light Special « Professor Mother Blog

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