Interview with Patti Digh author of Life is a Verb

You read the book review (go do it now, I'll wait) now read the interview:

Yes, I sat on the veranda sipping iced tea with Patti Digh while conducting this interview--at least virtually. (Actually I sent her and e-mail from my family room couch and if I was in my PJs at the time no one needs to know--lovely thing this internet. Though I would have enjoyed the whole veranda and tea thing!)

Patti writes one of my favorite blogs, 37 days and her book from the blog, Life Is A Verb has just been published.

* I am a daily reader of your blog. Your focus on intentional, inclusive living really hits home for me. Do you feel your principles apply to people who are extremely busy or overwhelmed? Do you think intentional living adds value to any life? How? Where does intention affect burn-out?

I think being mindful is especially important for people who are extremely busy or overwhelmed. Otherwise, it's easy to be mindful, isn't it?

Most of us exist in a state of overwhelm. I know I do. In those moments—as in all moments were change is needed—we need to consider the possibility that the change that is needed is often counterintuitive. That is, often the change that is needed is the exact opposite of what we believe is needed. So, when I'm stressed and have too much to do, I believe the answer is to work faster and let relationships falter because I don't have time for them. What if the change that will help most is to slow down and foster deeper relationships instead?

* I know that in your professional life you work with companies to improve their diversity. Do your diversity beliefs extend to people with disabilities? How do you feel including people with (cognitive) disabilities affects organizations/communities? What do you see as barriers or possibilities?

I have been active in the disability community for a long time. As a former board member of many national disability advocacy groups and as a longtime member of the President's Committee on Employment of People with Disabilities, I am a vocal advocate for people with physical and cognitive disabilities. I've written a lot about inclusion as it relates to people with all types of disabilities, including the ways in which our language frames our beliefs about and engagement with people with disabilities. Speaking about wheelchair-bound people evokes a different sense of that person's humanity, for example, than does people-first language like a "man who is a wheelchair user." In the first phrase, a wheelchair is a prison and the person in it is believed to be a victim while the people-first language evokes a full human being who uses a wheelchair to move about in his or her daily life. It is significant, the difference. We need to move toward people with disabilities and ask them how best to engage with them rather than move away from them in fear that we will offend them. We need to see them as people first.

*Tell us about your work on the President's commission: Which president? What was the name of it?? How long? Who with? What were you able to do/learn? What surprised or affected you about this experience?

I participated for many years under Bill Clinton's presidency in the President's Committee on Employment of People with Disabilities. We worked on disability issues at a national level, looking for ways to connect employers with people with disabilities for employment opportunities.

What surprised me most were two things: one, that we are often advocates for those things that personally affect us. That is, the employers most open to conversation about employing people with disabilities were those who had personal experience with disability in their families. We must learn to be advocates for people simply because they are human and not because we belong to their group.

And two, I was surprised that the disability community—as huge as it is (our nation's largest minority group)—was so splintered as to be somewhat ineffective. It was a great example (and there are so many in our nation) of the ways in which we can lose focus on desired outcome or intention and focus instead on circumstance (my group's interests first).


* What do you share with your daughters about people with differences? How have your girls responded?

I realized a few years ago that doing corporate diversity training had no chance of being as lasting as raising two daughters who think and talk openly about difference. With each of them, we have engaged in frank conversation about difference, providing them with the tools (I hope) to walk toward difference and not away from it. It started with each daughter reading books about difference—for example, Todd Parr's vibrant books are a great resource—letting them understand what differences exist in the world and how they all provide perspectives that can enrich our lives. By now, Emma knows the signals that I'm about to haul out the flip chart and do a little after-dinner lecture on stereotypes…(smile). It is simply a part of the DNA of our family.

* How does intentional living change lives? Do you feel it has ripple effects in the larger world?

We often believe that change can only happen in large pronouncements. But I honestly believe that local simplicities—the choices I make each day about how I am with you and what I am in service to—are the most profound tool we have for large-scale change. Because I write 37days, I pay more attention. Because I pay more attention, I see meaning in more small interactions. Because I see meaning, I have meaning in my life and I believe that all other humans have deep meaning in their lives. I can extend the same level of humanity to others that I grant to myself as a result. That's big. That's meaningful. That's powerful.

* What are your insights about how gaps between people with disabilities and others can be bridged?

I think we hesitate to engage with people with disabilities because we fear we will offend them. "How does he shake hands?" we ask ourselves. "Can he speak?" we wonder. "Should I help him across the street?" we ponder. How on earth will we know if we don't ask? What if we walked straight into the discomfort? How might that change the quality of our engagement with the world, and theirs? Who better to tell you whether they can shake hands than the person with the disability? Why do we believe we must have all the answers? Sometimes, my friends, the answers are resident in others.

* You talk in your book about the importance of things like pancakes and fun. How do pancakes and fun apply to the life of the disability advocate?

When we think about the question of 37days to live, often the impulse is to radically change our lives. What I am trying to get at in my work is the opposite of that: what if, instead, we lived RIGHT NOW the life we want, so that when we get to that last 37days, we continue living that very same precious life, rather than regret the one we didn't live. What if we continued hoeing the garden we are hoeing in our last days and just punctuated those precious hours with more chocolate chip pancakes instead? What if we played life as an infinite game, one we play to learn, as opposed to playing life as a finite game, one we play to win?


*Are there any questions you wish I had asked or is there anything else you want to say?

Terri, my thanks for your big, important work in the world and for participating in the Life is a Verb Blog Tour.

Thank you, Patti!

Interview with Kathy Z.: Transition

My friend Kathy Z. has a 21-year-old son with Asperger’s syndrome and she has dedicated much of the past several years navigating through the thorny process of transition. She has agreed to share some of what she has learned with my blog—perhaps other people will find information here that will help them on their own journey.

This information is great for people whose kids are near transition age, but it is also good information for people with small children--while the details will change before your child is this age, a 'big picture' view of your child will help inform the decisions you make everyday. This shouldn't overwhelm you, just give some direction to your thinking.

So, where do we begin?

A lot of the preparation for transition from high school to the world of adults with disabilities begins years before the actual transition occurs, somewhere between the ages of 18 and 21. Start by asking yourself: what happens when the school bus doesn’t stop anymore? We need to approach transition from two directions: work done in collaboration with the school, and work done by the family at home.

The work of fostering independence begins at home. Difficult as it may be, picture your kid as an adult, and try to envision where she will be living and what she’ll be doing as an adult. A lot of kids expect life to go on the way it has without any real expectation of what might come next or that there might be choices. It is really important to teach our kids “visioning,” that is, picturing themselves in different scenarios. In many respects, this is no different from the things we do for our “typical” children.

• Talk to your child about what they want to do when they grow up.
• Ask your kid what type of place they want to live in. When you visit someone who lives in an apartment talk about what it would be like to live there—the same with other types of places.
• Talk about what kind of home life they would want and who they would want to live with.
• In your travels through the community, point out people at work and ask your child if they would like that kind of job, or something similar.
• Pay a lot of attention to your child’s interests and strengths—individualize!!!!! Explore any career opportunities those interests may feed into.
• Encourage your child to become part of the community and foster a sense of responsibility. Look for volunteer opportunities.
• Remember that almost no one starts out with their ideal life: we all experience Plan A, Plan B, and “when all else fails”! Teach your child to work towards their goals on a step-by-step basis.

Ask your child what their goals are: in most instances you’ll find that they are no different than anyone else’s: a home, a family, and a “good job that pays reasonable money” as my son succinctly put it.

Many people who work with our kids limit their own vision to entry-level jobs where they expect our children to stay forever. Your child may have a progression of ideas or may want to change jobs at some point in their lives—you can teach your kids to look beyond and ahead. Our kids with disabilities often get few opportunities for dreaming and may have difficulty with the concept of time. They need practice.

Show them as many options as possible and get them in the habit of imagining changes. Their life will change anyway as they get older and their families get older—it’s inevitable. Like everyone else, they need the opportunity to THINK about it.

What other skills are important?

Foster independence as much as possible: teach them the life skills they will need to be as independent as they can when they become adults.

Among life skills to consider are:

• Self care and hygiene
• Social skills
• Relationship skills (for many types of relationships)
• Self-advocacy
• Problem solving
• Organization and schedules
• Budgeting/finances
• Home maintenance

What else do we need to consider?

• When your child is a teenager you need to be sure that your child is qualified for services through your region’s Developmental Disabilities Services Organization (in NY, called the DDSO, handily enough)—this should happen while your child is still in school. Qualifying (at least in NY) gives you access to family training, service coordination (which gets you help with all aspects of your child’s life!) and Medicaid reimbursement.
• Investigate agencies also, find out about their rules, restrictions and options and other possibilities and funding streams. You want to be sensitive to system-driven or consumer-driven philosophies and other possible agendas. For example, some people like a religious connection and some people do not.
• You also want to look into SSI, guardianship or its alternatives, and trusts.
• It is important to note that adults with disabilities are not entitled to services the way children are entitled to an education. Qualifying will probably REQUIRE negative documentation. So for this, you will put away all of the strength-based work you have done throughout your child’s life and use a deficit-based, needs-oriented approach. This is hard to stomach, but like any label, it is just a doorway to services.

Any other advice?

Transportation is the most important part of any plan! You can have the best job and interests in the world, but if your child can’t get from point A to point B it could all fall through.
OK, We have talked about what we need to do at home, what should we be collaborating with the school on?

The work done at home is more extensive and more difficult, but in the long run, the skills you teach and the services you put in place are well worth the effort.

Most people are familiar with the IEP process, and in many respects, this is the easier of the two approaches as you have the might of law and entitlement on your child’s side, and therefore support from school personnel. You begin early assuring that your kids’ education meets their needs and, thanks to IDEA, schools are required to begin planning for transition at age 14. Some things to consider:

• Don’t just think of this year’s goals, always include long-term goals.
• Put things that you think might be helpful in your child’s IEP.
• Investigate and consider alternative programming and schools. One size does NOT fit all.
• Enlist the help of school personnel to brainstorm vocational opportunities. As your child comes closer to graduation, ask for a vocational assessment and request work/study opportunities.
• It is also important to remember that your child does not have to graduate in 4 years so you have time for vocational work, etc. By law, schools are responsible for your child’s education until graduation or age 21.
• Work with school personnel to foster independence as much as possible.

[Note from Terri: It really is never too late to begin these things. Anything you gain today that you didn’t have yesterday is progress. And, even if these things aren’t all checked off at age 21, it is ok—people learn and mature throughout their lives and so will your child. Do you actually know ANY adult alive who had it all together when they were 21?

It is also important to realize that there are lives and choices for people who cannot make any of these gains. The amount of independence a person has with these and other skills determines the supports they need to have in place, NOT the quality of their lives—and don’t let anyone tell you otherwise!]

Back to Kathy:

What else?

Network!!!! Talk to people—officially and unofficially. Pick the brains of anyone and everyone. Brainstorm and ask lots of questions. You are looking for ideas, connections and support.

Strategize about what to ask and who to ask for ideas. People you may want to network with are:
• School personnel
• Agency leaders
• Community leaders
• Friends
• Family
• Legislators
• List-servs and on-line communities
• Your co-workers (your friends’ co-workers, too)

This all seems so confusing—so multi-focal all at once.

It can become overwhelming. So start early and don’t do it all at once. You do need to have both a big picture concept and small steps. I find a visual organizer like mind-mapping or fish-bones very helpful for visioning and for problem-solving. When you have the whole picture in front of you, prioritize steps and start taking steps.

Autism Awareness Month: An Interview with Julie Buick

During Autism Awareness Month I have invited some of my friends who know autism far better than I do to post on my blog. The following is an interview with my friend and fellow Partners in Policymaking graduate, Julie Buick. Julie graciously spent a couple of hours this week regaling me with stories about herself, her family, her thoughts on Autism and the importance of community.

Tell us about yourself and your family:

I'm a mom. A wife, a mom and an advocate. I have 3 children: a 13 year old daughter, and 2 sons who are 9 and nearly 6 years old.

And we can't forget my husband, Bill. He's my rock! We have been together for 19 years!

My 2 boys both have Fragile X and Autism. Though they have the same diagnosis, they are completely different. One of them has issues with OCD, stimming, sensory processing disorder and lots of allergies--the other has different symptoms and needs.

Autism is the fastest growing developmental disability with--as yet--no known cause or cure. It affects 1 in 150 children. A new case is diagnosed every 20 minutes. This year there will be more children diagnosed with autism than AIDS, diabetes and cancer combined.

What do you want folks to know about?

I think the most important thing is the community and belonging. We want a community that will accept and welcome our boys and treat them like we do. We aren't going to be around forever--the community needs to be ready.

We work toward inclusion for both of our boys. They go to different schools and they are progressing toward inclusion. Last year my older son was in a situation where his classroom was "in" a school, but not part of it at all. This year is different. This year his classroom "belongs" to the school--kids say "hi" and spend time with him. He is so much more excited to be there--he walks taller. His team and their faith in him make all the difference.

I do a lot to help get the community ready--for my kids, and for all kids with all disabilities. I give talks to teachers and schools and at local colleges about disability awareness and autism. I talk about individualizing, having a can-do attitude. If I can just educate people I can take the fear out of the unknown.

I tell them that for us autism is just a label for services. We don't deal with autism at home. We just accept our kids for who they are.

I think accepting them is key. People always ask me how I cope and I tell them I don't. It's not "coping" if you accept your children. We definitely do different things for our kids than we would if they didn't have autism but it's because 'Bobby needs this' or 'Billy likes that,' or ' Katherine wants something else.' Every parent and every child wants or needs different things in any family. That isn't "coping," it's parenting!

I don't have trouble with "coping." I do have trouble finding enough time to do all the things I want to, but everyone says that!

What is the role of advocacy?

Advocacy is crucial--and it isn't a coping skill either! Advocacy is not a choice--it is the way you get everything, change everything, and make things work.

All parents advocate for their kids at some point. It's just what you do,

I know you always have lots going on--what are you working on lately?

You have to understand that I do take on a lot because I CAN. Not everyone can or wants to do all this depending on their life and their child, what's going on at home, etc.

I have great support at home--my husband enjoys being at home with the kids and supports my efforts.

I worked overnights for years so I would be home during the days for meetings and such. I still work for the same agency, but now I work at the Pieters Family Life Center which is a community center (totally inclusive!) In my job I get to run SibShops, a Spectrum Family Support Group and more.

Outside of work, I am:
• a presenter with The Advocacy Center providing disAbility awareness presentations in our community through the speakers bureau,
• Vice President of Operations for UNYFEAT (Upstate New York for Effective Autism Treatment which is the largest not-for-profit-501(c)3 in the Rochester area) Right now we are working to bring the nationally known organization Lose the Training Wheels to Rochester for a clinic this summer.
• Autism Speaks Chapter Advocacy Chair for Upstate NY region is yet another hat that I wear and a very important one. My Autism Speaks hat is the one which helps get much needed money for research.
• Training for a 10k run!

Autism costs our nation 90 billion a year and that is expected to double within the next decade. Our communities and our nation cannot afford NOT to know about Autism.

We need to raise awareness, find answers through research and provide appropriate educational services to teach life skills so that our kids become productive, healthy, happy adults, working, playing and living in our communities.

Now is the time to make a difference!

Any closing words?

I love 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