Wow! Some Folks are Just Too Clever

My friend Jennica just sent this out, is it amazing or what??

Try This Tuesday: Showers of Independence

I love a theme song!

Let's just say that all goals are not created equal. We have goals for our children that are temporary, showy or that prove eventually to be less important than we thought they would be when we thought them up. Achieving as much independence with hygiene as possible is not one of the silly ones--it is safer to be able to do private things more privately, it is terrific for self-esteem and it makes life easier to engineer for everyone. Granted, as much independence as possible looks different for every person with a disability, but this is an area where efforts are seldom wasted.

I look at hygiene as sort of a tonesetter kind of goal--are we into finding a comfortable routine for our family or do we have a continuous improvement mindset? (Neither of which is right or wrong--or necessarily permanent, they are just different approaches.) Our family has moved between these two mindsets as life has evolved, and will continue to do so, I am sure.

To work on hygiene goals you can take one of two approaches. You can start from the bottom up, write a plan that begins at the beginning with Step 1: Gather supplies and ends with Step 37: Put on your pajamas. Or you can begin with the routine you have and tweak it constantly until you have ARRIVED. Which approach you choose depends on your child and your family and what you are trying to teach.

With bathing we took the tweaking approach. We started many years ago by just handing my daughter the washcloth and having her wash her face and grew things from there.

Many things needed tweaking as we went:
-We moved her from showering in the tub to the shower stall when we realized stepping over the side of the tub really scared her.
-We went from sitting nearby and handing her a towel to dry her face 1000 times/shower to hanging one where she can reach it.
-We tried one of those shower mirrors to see if it helped her get the soap out of her hair (it didn't so it's gone...)
-We moved from cuing, to asking what's next, to not being in the room.
-We still have some tweaking to do--we just recently marked the safe temperature range on the faucet so she can set the water temp. herself (She knows to test the water with her hand, but I still kept looking for something we could teach her that would apply anywhere--couldn't figure that out so resorted to marking the faucet... will be tweaking again when a new idea comes along.)

And the beat goes on...

My friends whose kids have different disabilities are also increasing independence in highly individualized ways--and tweaking things as they go. My one friend has been teaching her son who doesn't move independently to direct the process--and she has had to modulate his approach so he doesn't drive his caregivers away (think about what a great lesson this is--management training! He will know how to be a boss when he's done!)

The big question is usually quality control and my rule of thumb is that most things missed today can be caught in tomorrow's shower... sometimes we send her back (we have done this with others of our children over the years as well)...

The only big rule is once they are independent with something try as hard as you can not to take it back. In other words, unless there is an emergency (and how many shower emergencies are there really??) we don't go back in... ever. This has meant rinsing shampoo out of her hair in the kitchen sink--not convenient, but better than taking away earned independence.

The book I recommended two weeks ago, Steps to Independence, is a great help for breaking tasks into steps and teaching them. Another great resource is the Disability Solutions newsletter. It is no longer being produced, but their archive is available on line and every issue is pure gold! Check out Volume 6, issue 1 talks about transition to adulthood and has lots of good advice.

Try this Tuesday: About that IEP

Oh yes, it is that season again!!! Here are some tips I hope you find helpful as you prepare for your IEP meetings.

1. Organize your thoughts. Someone gave me this acronym and I use it as a checklist for myself: MAPS: Management needs, Academics, Physical needs, Social needs. I divide a big piece of paper in quarters and brainstorm each area, then organize what I come up with. Lots of folks have different systems, but that seems to work for me.

2. Organize your papers. It helps, trust me. Go see the possible placements, meet the people involved.

3. Know your rights. Your child is entitled to an education as a citizen—not IF he is toilet trained, or WHEN she becomes more independent. NOW. If they need support to be successful, they can have that support. Maintain perspective—it will cost your community far more if your child is not educated than it will cost to educate them. Hold your ground.

4. Practice phrasing everything in terms of needs. So instead of saying “we want Susie to have the limousine” say “Susie needs a vehicle roomy enough to…”

5. Deal with your feelings. Before the meeting. Vent to your friends, your mom, the people you work with and your advocate. New parents are dealing with many new feelings, seasoned parents are dealing with HISTORY—don’t go into the meeting full of pent-up emotions. You want to be able to think as clearly as possible. Some emotion makes everybody care—too much can derail the whole process.

6. Consider your negotiables and non-negotiables. Consider the possibility of many paths to the same outcome. I wanted an additional year of pre-school for my daughter—within limits I could be flexible about WHICH pre-school.

7. Consider the school’s point of view before your meeting. If you don’t know what their point of view is, ask them. You need to be able to address their concerns. And, if their ideas are vastly different from your views, you need time to get yourself into a “respectful, but not agreeing” mindset. That mindset is necessary for the team to function. A shocked yell of “WHAT the _______!!!!!” can really take a meeting down a wrong road…

8. Bring someone with you. Bring your spouse, a friend to take notes, your clergyperson (who can share how helpful your child is in Sunday school) or an advocate. It is so helpful to have another person who witnessed what went on. And they often add perspective to the meeting (make sure well ahead of the meeting that you and whoever is going with you are on the same page, of course.)

9. Plan several ways to explain your perspective. At one of my son’s meetings they wanted to discontinue all of my son’s accommodations because he wasn’t improving (he has a learning disability.) I was able to turn things around by pointing out that accommodations aren’t therapies, accommodations are like eyeglasses: glasses don’t fix people’s eyes, they just adjust eyesight, and people who wear them can’t function without them—ever…

10. Strategize. When there is some disagreement much of the team will be at the table geared up for a fight. They expect (and will goad you into) direct assaults, anger and negativity. If you can surprise them with a relentlessly positive perspective, humor, well placed questions,and relationship-building strategies amazing things can sometimes happen.

Good luck to us all! What else would anyone recommend?

Try this Tuesday: Book Recommendation

One of the most helpful books on my shelf is Steps to Independence: Teaching Everyday Skills to Children with Special Needs by Baker and Brightman.

It is a book full of step-by-step teaching information. It tells you how to break tasks down and how to avoid pitfalls. It is also full of tasks to teach. It has chapters on get ready skills, toilet training (I didn't have it back then), behavior management, independent living skills and more. It teaches you how to teach and how to evaluate. I admit that we don't always follow the process exactly (I really can't take that much process sometimes), but I never fail to find helpful information and ideas

While I find the book sort of frustrating sometimes because it is so process-y, this is of course why I need it. I find breaking things down hard to even think about sometimes and this book always gives me a place to start.

Beyond this it fully acknowledges the problem of creating kids who are totally cue-dependent and has you teaching the child to ask themselves "what comes next?" Teaching that thought process has been the biggest "step to independence" for us. It gets me out of the middle of the task once she has the steps. From taking showers to working on schoolwork, to playing games, to household chores, this book has been a HUGE help at our house.

For other book recommendations check out this post!

A Few of My Favorite Things

I was tempted to look for the song "All I Want is a Room Somewhere" from My Fair Lady this afternoon. It is COLD here and just going to get colder and colder and a room somewhere “far away from the cold night air” is just what I need—sadly, it has nothing to do with my post.

A woman I worked with made a statement I usually ignore, but she followed it with, “I wish I had some ideas to give my sister.” Apparently her sister is a new mom and the baby has just been given a disability diagnosis. That statement changed the often heard “I don’t know how you do it!” (which I find pointless—pedestals are just too small to live on,) into a request for actual information, so I gave it some thought… What actually does help me?

Turns out there are a bunch of things for me—this is not an exhaustive list and I am sure what works for me will not work for everyone, but maybe it’s food for thought… So here is my list of some favorite things:

Information: Up-to-date, accurate information is critically important for making good decisions. Start with your doctor, look for support groups, there is a lot of great information on line (but hook up with someone experienced to make it easier to tell the good from the bad information.) I like conferences—large and small—I am an interactive learner and listening to speakers and discussing what I have learned helps me.

When you look at books about disabilities make sure that they are recently published—we live in a scientific age where info gets updated all the time and you want the latest and greatest. (If your child has Down syndrome Road Map to Holland by Jennifer Graf Gronenberg is a good one.)

Gathering: My local Down syndrome parent group has provided years of information and companionship for the journey. I have heard some folks say that a disability diagnosis is a poor way to choose friends (I myself have never chosen or rejected a friend by whether or not they wear glasses!), but over my years of parenting I have hung out with the music boosters at my kids’ schools, Irish dance families, the church nursery volunteers, and more—it is helpful and it’s fun to know people who share your common experiences. A few have become forever friends, but whether or not they do, being part of a community that “gets” what we’re doing has been valuable.

A Sense of Humor: Laughter lightens so much. Giggling is good for me!

A Sense of Purpose: I have really benefited from believing that anything I learn, I learn to share. I also believe that changing systems is as important as changing individual situations.

Faith: I am a person of faith and that has given pretty much everything in my life context. I find my faith sustaining (and it gives me my sense of purpose.) Regular doses of inspiration feed faith, so I seek them.

Health and Self-Care: Not that I don’t lapse in this when things just get TOO hectic, but nutrition, exercise, sleep, vitamins, haircuts, regular laundry and showers, and an orderly home (check out Flylady.net) all nourish me when I remember to fit them in. They are the source of stamina—and this life is a marathon, not a sprint.

Optimism: I really don’t get credit for this, somehow optimism is my default setting. Well usually, anyway…. I usually believe that I can try SOMETHING and that I can have an impact with my efforts. It doesn’t always work out, of course, but believing something good could happen makes me more willing to try.

Believers: I worked for many years with a woman that drove me out of my mind. She was an OT who always pushed for MORE for all of my patients—she never settled. NEVER!

If people walked, she wanted them to run, if they climbed Mt. Everest she wanted us to get them to walk on water. Team meetings with her were so frustrating—she was UNREALISTIC in the extreme.

But, here’s the deal: While we never did get anyone to walk on water, we did so much more, got so much farther and our patients made so many more gains because she was on our team—she kept us striving always and everyone won because of it.

I am a disability believer and I surround myself with disability believers. I read them, listen to them and follow them everywhere. Because I know my daughter and everyone I advocate with will go so much further if I do.

My blogroll (in the right column of the blog) has many believers. Also check out the book Disability is Natural by Kathie Snow for an introduction to believing.

Family and Friends: they support everything I have already written. Studies show that people with friends and supportive families live longer, healthier lives. They certainly have more fun. I pursue this actively—for myself and for my daughter.

Distance from Systems: Responsive systems are just not something I can count on. When it works it is awesome. When the doctor listens, the teachers care, the therapists individualize, etc, etc, etc. it is grand. And I can have an impact on this with good advocacy skills and persistence, but I don’t count on this for personal support—any system is only as good as today’s director, grants and budget, and that can change any time. Enjoy when things are good, try not to take it to heart when systems go bad.

Good advocacy resource: From Emotions to Advocacy by Pete and Pam Wright.

Seek Joy, Adventure, Laughter, ETC…: The world loves the “disability is tragedy” script. If you buy into this attitude it will define your life. Disability just IS. I write my own script and frame my experiences in ways I can live with. The ‘woe is me’ mindset just does not work for me.

So, what are your thoughts? What would you share with new moms?

Autism Awareness Month:Guest Blogger Monica Moshenko

Since I do not have a connection with Autism myself I offered my friends who know more about Autism than I do the chance to guest-blog here. Monica is the parent of an awesome son with Autism and a fellow Partners in Policymaking grad (from my class, actually!) She is also the host of Disability News and Views Radio. This article of hers was originally published by Autism Today. PS: The house in this picture is for sale so if you are looking to move to Bufflo, NY leave a comment!

Finances an Added Burden for the Disabled and Their Families
By Monica S. Moshenko
Power Advocates, Inc.

For those of you who have a child with a disability, or are an adult with a disability, finances play an integral role in the services and supports that are needed. There were times in the last few years, when I made choices to pay for a therapy my son needed, instead of paying the phone bill or car payment because the health insurance company often limits the frequency or doesn't even cover it.

I have known far too many families who had to sacrifice so much to ensure that their child receives the interventions and attention they so desperately require. Some parents have had to refinance their homes and often go without the many "extras" that many others seem to have- the second car, vacations, and even going out to restaurants, to pay for ongoing medical costs which usually aren't covered by typical HMO's. For the parent or adult who doesn't have any health insurance, there are increased challenges and stresses accompanied by this problem, making life extremely difficult. There are resources that parents of disabled children and disabled adults can apply for in New York State, as well as national resources I want to provide for you.

One program called the "Medicaid HCB Waiver Program" which allows States to take Medicaid funds that were previously only available to institutions, and apply them to community and home-based programs.

According to the U.S. Dept. of Health and Human Services, "Medicaid's home and community-based services waiver program affords States the flexibility to develop and implement creative alternatives to institutionalizing Medicaid-eligible individuals." Many individuals can be cared for in their homes and communities, preserving their independence and ties to family, and friends, at a cost no higher than that of institutional care. When these programs are provided, the individual also becomes a contributing member of the community, thereby enriching all of our lives.

Some of the services that maybe provided without prior approval of the Federal government through this program include: Case Management Services, Homemaker Services, Home Health Aide Services, Personal Care Services, Adult Day Health Habilitation and Respite Care Services.

Other services which maybe provided with prior approval include: Transportation, In-Home Support, Meal Services, Special Communication, Minor Home Modifications, and Adult Day Care.

To apply for the HCB Medicaid Waiver, you need to have documented information about the disability, along with information of how the disability affects the person's daily living. Your income is not a factor when applying for the HCB waiver.

Waiver services may be provided to the elderly and disabled, the physically disabled, the developmentally disabled and mentally ill. Waivers may also be targeted to individuals with a specific illness or condition, such as technology-dependent children or individuals with AIDS.

Under the waiver program, States can make home and community based services available to individuals who would otherwise qualify for Medicaid only if they were in an out of home setting.

Contact a Caseworker from an agency such as People Inc. or Heritage Centers (see the list of resources which follow) to begin the application process, which can take several months. Once the application is completed, it is submitted to a review committee at the WNY DDSO. When a decision is made, a letter is then sent to the applicant and the agency that you are working with. If you are denied, you can always apply again, perhaps submitting more specific information or you can request a Fair Hearing for further review of the application.

If you have an adult child with a disability, they may be eligible for either SSI (Supplemental Security Income), or SSDI (Social Security Disability Insurance) regardless of your income or assets. Both of these programs provide money to people with disabilities who aren't capable of "substantial gainful activity" or SGA. If a physical or mental impairment prevents your adult child from doing any job that will enable him or her to independently earn $500 or more per month, he or she may be eligible for either SSI or SSDI if other requirements of the program are also met.
§ SSI requires that in addition to being disabled and incapable of SGA a person must also be poor. SSI sets limits on the amount of money one can earn in a month (countable income) and on the value of money or property owned (countable resources). It is important to note that once a child reaches 18 years of age, his or her parents' income and resources are not counted for SSI eligibility.

SSDI is only available to people (including their dependents) who have paid into the Social Security system by working a required amount of time. Dependent adult children are eligible for benefits under their parents' work record. Dependent adult children are defined as becoming disabled prior to the age of 22, single, and incapable of substantial gainful activity. If the parent fulfilled the required SSDI work time and then dies, retires, or becomes disabled, a dependent adult child will receive cash benefits based on that parent's earnings. It is important to note that the child does not need to be poor to receive the cash benefits, nor does the child have to live at home. (Excerpted from "Adult Child Benefits: Social Security 101," by Theresa Varnet, Exceptional Parent, September 1997)

There are a variety of work incentive programs for individuals with disabilities who wish to work without immediately jeopardizing their SSI/SSDI benefits. The Work Incentives Improvement Act (WIIA), introduced in Congress on January 28, 1999, would allow beneficiaries of SSI and SSDI to work without losing their Medicaid or Medicare benefits. More information about the details of these programs, eligibility requirements and work incentives can be obtained from a variety of sources including the Social Security Administration at 1-800-772-1213 (TDD: 1-800-325-0778) and the NYS Dept. of Labor at (518) 485-6176 or email usacjv@labor.state.ny.us (New York Works: Self-Sufficiency through Employment Initiatives). This program is being offered in Buffalo.

I have listed local and national agencies that provide information, support and assistance. Local churches should be providing some assistance to the disabled as well (i.e. food, clothing, counseling, financial)


NATIONAL RESOURCES
The Brass Ring provides grants to fulfill the dreams of children who suffer from a life threatening or terminal illness. Phone 1-800-666-WISH Website: www.worldramp.net/brassring/

Disability Funding News is a national newsletter covering federal and private funding for people with disabilities. Phone 1-800-666-6380 Website: www.cdpublications.com/funding/dfn.htm

In His Name Ministries, an interfaith, non-profit charitable organization that addresses the news of the disabled, elderly and the struggling single.
Phone 1-405- 706-6295 Website: www.inhisname.org/ email dee@inhisname.org organization that addresses the financial needs of the disabled, elderly, and struggling single

The Make-A-Wish Foundation grants wishes to children under the age of twelve with life threatening illnesses. Phone 1-800-722-9474, Website: www.wish.org, email MAWFA@wish.org

(Correction: They actually grant wishes to children between the age of 2-1/2 and 18 with life-threatening medical conditions.)

National Rehabilitation Information Center (NARIC) provides referrals for persons with disabilities to organizations that may financially assist them in a variety of ways (i.e. education). Phone 1-800-346-2742 Website: www.naric.com

National Organization of Social Security Claimants Representatives (NOSSCR) is an association of attorneys and paralegals who represent Social Security and Supplemental Security Income claimants. Phone 1-800-431-2804, Website: www.nosscr.org. and email nosscr@worlnet.att.net

Physician's Disability Services, Inc. is a publishing company that helps people with disabilities prove their Social Security disabililty claims. Phone 1-410-431-5279 Website: www.disabilityfacts.com and email smith@disabilityfacts.com
The Sunshine Foundation grants wishes to chronically, and terminally ill, disabled and physically abused children ages 2 ½ to 22. Phone 1-941-424-4188 Website: www.sunshinefoundation.org, email sundv@gte.net

To see other posts on this blog click here.

Disability and Stress 9-1-1: Tips for Managing in a Crisis

When things are not working for us or our kids we can be pushed into crisis mode--and these crises can be short-term or long-term. We can be in a terrible panic and at the same time we have to make sound decisions and keep on living. These tips have been helpful for me, I hope they are for you as well.

Talk with friends. It surprises me how often people who are struggling will say, “Oh my friends can’t help me with this.” Some jobs do have specific parameters and specific job descriptions—for example, if you don’t have a fire, don’t call the fire department—but friendship should be much broader than this.

It is true that your friends probably won’t be able to rescue you or your child from their bad teacher, IEP, job or health issue. Many friends could understand that you are struggling though, and some might actually be able to offer perspective even though their own lives are different from yours.

Friends who can’t make the leap to understand your disability issues or struggles should not be discarded out of hand. The friend that can keep you up on your soaps or on what Dr. McDreamy is doing, the friends you exercise with and the friends you went to high school with can—and are often happy to—provide small distractions which can be very refreshing.

By the same token, avoid toxic people. Naysayers and people who cannot value you, your child or your decisions will only make your burdens heavier. If the toxic person is your parent or someone you feel you need to support set boundaries around how much time you spend together and what you tell them about your life. In a crisis avoid them entirely.

A toxic person will NOT become non-toxic because they SHOULD or if you just explain your situation. Protect yourself and your family. If they change they will come to you with understanding, until that happens do not allow them access, they will sap your strength.

Vent, don’t stew. When you are discussing your crisis notice the way you are feeling. If you are feeling lighter you are venting—this is good. It will help clear your head making better decision-making possible. If you are feeling more and more upset you are stewing—this is bad. You will leave the conversation worse off than you were when you went in…be careful!

Seek professional help. Professional counselors, physicians, psychiatrists and psychologists can be very helpful to people who are navigating a short or long crises. Do not deny yourself help when you need it.

Support groups. These get a bad rap sometimes. People think they will find bunches of sad people feeling sorry for themselves and each other. This has not been my experience at all (thankfully!) I have learned most of my advocacy skills and disability-related problem solving skills from other parents and I met many of these parents in my local Down syndrome group and school district parent group. These are certainly not my only supports, but they have helped me in many ways over the years.

Distract yourself. Engaging in something other than the problems at hand for bit can be incredibly helpful. Watch a movie, go for a walk, clean the garage, garden, read a book or magazine (or a blog!), mop your floor.

Be smart about this—this isn’t full-scale avoidance of necessary work. It is just a small “snack”. You might not want to take on the whole garage—just a corner. A little time away freshens perspective, too much will just expand your burdens.

Create order. Terrible situations are only worse if you can’t find your keys. Following routines and keeping things as orderly as possible is MORE important when things are falling apart. The sight of clutter and the struggle digging through things and not finding things adds more panic and adrenaline to a crisis. Don’t beat yourself up about this, just start hanging up your coat in the same place and keeping your keys in the same pocket. When you get the chance to straighten something out, do. These little improvements reap rewards of calmness. (I am the worst at having my house explode in paper and dirty dishes when things go awry—little improvements really pay off, I promise!)

This is also something you can ask certain friends to help you with sometimes. Even if you can’t ask anyone to clean or organize your paper piles, have your friend type and laminate a list of phone numbers for you, or remind you to charge your cell phone and put gas in the car.

Use stress-reduction techniques. Deep breathing, yoga, exercise and more can make people feel calmer and calmer people cope better.

Gather information. Know what you or your child needs, know your diagnosis, understand as much as you can about available options, learn about the laws and policies that govern your situation, investigate other options, etc. Understand your situation so that you are as equal as you can be at the decision-making table.

There can come a time where more information won’t make your choices clearer—when you get to that point STOP! It’s time to employ a different strategy!

Strategize. When approaching a problem think about who may be involved, what their point of view might be and how to address them. Look for allies. Use the information you have, use the advocacy skills and negotiation skills you have learned or bring in someone to help you. Think about your negotiables and non-negotiables. It may be imperative that your child be hospitalized in your home town for example and not matter to you that they will be on an adult floor—or vice verse—for example.

Hold on to your vision. Clarify, strengthen and build your vision for the future for yourself and your child. When a system does not meet your needs this is not your failure, your child’s failure, or your vision’s failure. You may eventually choose an imperfect solution within a system, but this is not because you were wrong—and you are free to choose something that is a better fit at a different time.

Let yourself enjoy the other aspects of your life. This can be terrifically challenging, but it doesn’t have to be huge—sneak a spoonful of the hot fudge from the fridge once in a while, shower with your favorite smelly soap, find things to laugh at wherever you can. Don’t skip birthday parties or nights out if you can help it.

Even if your child demands your presence now they will one day feel guilt if you limit your life too much.

Avoid resentment. Resentment is a very ugly and consuming emotion. It comes from feeling like a victim so make choices where you can and when you think or talk about those choices say, “we chose to do this because…” instead of “we had to…” or “we couldn’t...”

Cultivate other positive experiences. Just because things are going badly at school doesn’t mean they have to go badly everywhere. Enroll your child in a course at the local museum, join a theater group or get a season ticket, take dance, take up cooking or any other thing that will be fun and successful. Look for small things if you need to—really liking tea, or petting your dogs, or taking pictures counts!

I hope these ideas give you some food for thought and some ideas to relieve a little of your stress! Please feel free to share any additional ideas in the comments--you never know who you could help!

Photo from here.

Ten Ways to Avoid Burn-out for Disability Advocates

My alphabet series continues with all the hard letters ahead!! Today is T…

Whether you are involved in personal advocacy—facilitating life for yourself or another person who has a disability—or whether you are advocating for improvement in entire systems and cultures that affect people with disabilities, the most difficult thing to manage is our own energy. Many times burn-out and exhaustion (or the fear of burn-out and exhaustion) keep us from getting involved.

There are, however, people who stay active for years and years without being consumed—so how do they do it???

I believe that often these feelings of burn-out stem from a feeling of helplessness. I will begin with a list of 10 antidotes—I would love you to put your own additions in the comments section where anyone who reads this can benefit from them.

Self care. Taking the best care you can of yourself is the FIRST and most important advocacy skill anyone can learn—and sometimes one of the most difficult.The realities of our lives often affect our most basic functions. If for example, our child does not sleep, we might not sleep either. While we may need to live with very different sleep patterns, we should not ever make the mental leap that says our sleep doesn’t matter. Even if we haven’t come up with a viable solution yet, our mindset needs to affirm that we and our needs DO matter.

It is counter-intuitive, but an attitude of self-respect makes us respect-able to the folks we are approaching. Advocacy is more successful among equals. If we give the impression that we are suffering martyrs folks will need to “rescue” us—and we won’t have input, instead we will need to be grateful for whatever they can come up with. If people see us as inspirational heroes there is nothing they can come up with that will meet our standards, so they are off the hook to try to. We again, will just have to deal with whatever they offer because they ‘could never reach our level.’

If we are equals at the table (any table—at school, at work, or at the statehouse) we can better work to craft something that will meet our needs.

Caring for yourself happens behind the scenes, but the attitude of self-respect that it instills in you is a very effective advocacy tool. Try it, you’ll like it!

Inspire yourself. Surround yourself with uplifting things as much as you can. Artwork (gallery-ready, or posters, or something made by your kids—your choice!), music, movies, newsletters, e-subscriptions, or whatever will improve your ability to address your needs with others.

If your faith tradition has a daily discipline that inspires you, try to fit it in (modify it for your needs—it’s a reasonable accommodation!). If you have friends that always make you feel better, get in touch with them and if you have friends that bring you down avoid them!!!! If a certain color, or wearing jewelry or not wearing jewelry inspires you, go for it!

I like the movie Robots which is good since I see it many, many, many times a week (“See a need, fill a need”—who wouldn’t love that?), I like Natalie Grant’s song What Are You Waiting For, I love Darynkagan.com and Gimundo.com, I subscribe to charityfocus.com, I listen to a fair amount of Irish music… None of these are the focal points of my life—they are merely the ‘soundtrack’ and set the scene.

What inspires you? What does your ‘soundtrack’ sound like? What scene have you set? Share your ideas, I want to know!

Develop skills. There are classes, on-line resources, books, and more experienced mentors in nearly every area of advocacy. Knowing how to write a powerful letter, give testimony, use a microphone, negotiate, look up a law, understand a law, meet with a legislator, etc is very empowering.

A person who has these skills is not intimidated—does not feel helpless—because they can address anything. Knowing that you are able to face the situations that may arise in your life is a great way to prevent that overwhelmed feeling that makes you want to crawl under your bed. Having the tools you need on hand, aka being prepared, works—whether you’re trekking through the wilderness, climbing mountains, or living with a disability.

If you want trainings there is a Partners in Policymaking program in most states (there are also on-line Partners sessions), there are Parent Training and Information Centers in every state, there are University Centers on Excellence in Developmental Disabilities around the country, and Parent-to-Parent is everywhere.

Over to the right hand side of this blog are listed many great books and websites that teach skills—check them out!

What else would anyone recommend?

Be informed. Once you have the skills you need, knowing what is going on is the next step of empowerment. You need to know your rights, you need to know when things are changing, and how and why. Staying aware prevents overwhelming surprises and allows you to plan advocacy efforts that can make a difference.

Have a sense of history. When you are arguing with your school district or trying to change a law it is easy to get frustrated and think that your efforts make no difference. Remembering that 35 years ago that people with disabilities did not have the RIGHT to an education, that no one had ever considered accessibility, that the life expectancy of people with Down syndrome was 9 years old helps. It helps us to remember that the efforts of other have moved things forward, and ours will too. Little by little.


Respond. Often our feeling of helplessness come from feeling we should ‘do something’ and then not doing it. Do not buy into all-or-nothing thinking and decide that since you can’t run for president you can’t do anything at all. Pick an action and do it—you’ll feel better.

Right-size your response. There are two aspects to this idea. First, be strategic and choose to do something that has the highest chance of making a difference. Secondly, choose something that will satisfy you.

Years ago my brother worked several small part-time jobs. He was in college and needed money without ongoing responsibilities—it was perfect at the time. When he was done with school he kept those jobs for a while and eventually the lack of connection and cohesiveness began to depress him. At that time he needed one job with ongoing responsibilities that would BUILD something for him.

Sometimes you need to just pass along e-mails, sometimes you need a project, sometimes you need to make a career of an issue. Listen to yourself, and invest what you need to invest to be satisfied.

Supersize EVERYTHING! I don’t mean when you are out to eat. I mean get as much bang for every effort you make as you can. If you write two minutes of testimony and speak at your county’s budget hearing make copies of it for each of the legislators to have, tweak it and turn it into a letter to the editor, tweak it again and turn it into a newsletter article, e-mail it to as many people as you can think of, etc.

Make your efforts count by putting each thing you do to work in as many ways as you can think of!

Friends, supporters, and mentors. Have them, be them. Enough said!

Creativity and passion. The successful long-term advocates I know are creative. They look for new skills, new approaches and new ideas in advocacy. They do not keep doing the same things over and over and over.

They also have other passions and interests in their lives. (Gary DeCarolis calls them ‘sanctuaries.’) They are active in their churches, travel, make stained glass, garden, collect antiques, read voraciously, cook like fiends or SOMETHING!

That's 10. What should we add?