Book Review: Late, Lost and Unprepared by Cooper-Kahn and Dietzel

Late, Lost and Unprepared: A Parents' Guide to Helping Children with Executive Functioning by Joyce Cooper-Kahn, PhD and Laurie Dietzel, PhD is a breath of fresh air. It offers a positive and practical approach to the maddening issues of Executive Functioning Disorder.

The executive functions are our brain's coordinating and directing functions. They include such skills as planning, organizing, scheduling, initiating, emotional control and working memory, to name a few. These functions can be disordered in anyone and can be affected by upbringing, experience, maturity and disability.

When these functions work smoothly, life goes well; and when they don't, it just doesn't.

From what I have found, there are traditionally 2 approaches to executive functioning difficulties: The first is to write the child off as lazy. The second is to write long, dull, negative, theory-dense, strategy-thin, tomes about it.

Neither of these approaches has helped my family much.

This book breaks that mold. This book is short. It is divided into 2 sections. The first discusses what the Executive Functions are, how they affect our lives and how they are assessed. The second section explains the process of changing behaviors and then has a chapter about each of the 8 components of Executive Functioning.

Each chapter in this section includes explanations, short term strategies, longer-term approaches for reducing support/increasing independence, and advocacy tips for working with your child's school on the issue.

The book is designed so that you can go directly to the chapters you need. So if my son is having trouble getting started on activities, but no difficulty with impulse control you can read the one chapter and not the other.

Each chapter offers lots of strategies for change--the strategies are concrete and doable and the overall tone is positive.

For my son who has Non-Verbal Learning Disorder these issues loom very large and I have been sharing quite a lot of the book with him as I go. For my daughter who has Down syndrome many of the same concepts apply.

The book offers strategies to meet a variety of learning styles with somewhat of an emphasis on auditory prompts and reminders. For my son these are great as-is, for my daughter the auditory prompts in the book require simplifying (a modification I would expect to make with most things.)

I am finding this book useful for helping my son and daughter with their differing diagnoses, I have shared a few nuggets with my other daughter and have even claimed a few strategies for myself!

That's my idea of a helpful book!

Picture and to learn more about this book click here.

A Delicate Dance

The relationship between someone with a disability and the people who provide their support can demand some complex choreography.

Since my daughter Jenn started at her new school this year people notice a difference in her ability to converse. She participates more. People notice that she takes more turns and clarifies more when people don't understand what she said.

What changed? Mostly, I think it's that she no longer has a 1:1 aide.

Now, don't get me wrong, Jenn had wonderful, well-trained, supportive aides. They were intent on making her more independent. Their presence made TONS of experiences available to her in our public school that she would have missed without them.

Yet, while the existence of a designated support person creates lots of opportunities, it also creates a tricky relationship. This relationship must be functional if the aide is to provide effective, individualized support. However, this relationship also turns the two--supported and supporter--into a "partnership."

A partnership is a social arrangement with etiquette and expectations. It requires give and take. It's both a useful and complex situation. (And it doesn't just occur in disability, executives and their secretaries contend with these issues on some level, as do couples.)When you're working with someone who is in partnership you are not just dealing with the individual--with either individual--anymore. You are dealing with the team.

I have met people in support situations who try to negate the "partnership" dynamic. I have met a deaf woman and a blind man who instruct people who are interacting with them not to address their support staff. Ever. While the desire to keep lines from blurring and to be addressed as an individual is understandable, it is awkward for observers and almost abusive to the support person to be treated this way. Consequently, this isn't the way most partnerships function.

Others try to treat their support partners more as friends. This works great if both people are compatible and can negotiate the leading-following nature of support--if not it gets ugly.

And if the supporter is an adult and the supportee is a child the partnership can't be anything but directive. But an adult with a cognitive disability is NOT a child. Providing adequate support AND self-determination requires both intention and attention.

With Jenn her partner status presented as a subtle waiting, a slight holding back and non-ownership of her role in conversation and other situations.

There are trainings and articles on the subject (like this one) but I don't think the questions of support vs. enablement, and codependence vs. interdependence vs. supported independence ever completely go away.

Parent as Support Partner.

When the parent is the support partner the complications of both the partnering and the parenting relationship get piled on even thicker.

When I am the support person my partner should be as self-determined as possible and I am there to facilitate.

When I parent I create the stuctures and expectations for my children...

My daughter needs both of these things, and it's hard to do them both at the same time.

Sometimes it's so easy to over-support because I do know what she's saying, because I know how hard some things are for her, because I'm her mother and KNOW what's best, because I don't have an objective view of her maturity or capability, etc, etc, etc... Beyond this, keeping my support-partner hat on all the time can be stifling for both of us--knowing when or how to remove it is really difficult.

When am I a parent? When am I a partner? And what if I need something?

Recently I turned down an evening swimming program for my daughter because I would have needed to swim with her. The opportunity to swim is good for her, but swimming after supper would disrupt my sleep which I just can't afford. The program director found a volunteer to swim with her... and I still feel a little guilty.

And when do you turn off the "because I'm the mom" mojo? I have seen parents of adults with disabilities subtly and not-so-subtly direct their adult child's choices. A partner who is also mom has undue power. Should she exercise that power?

Yet, NOT being mommish, being professional and detached doesn't work either. People need their parents to be attached and parental. At least sometimes.

And how does this work with the rest of your family members?

So far this is what I try to do: I try to engineer opportunities for my daughter to run alone--in big and small ways whenever possible. When she does need a partner, I work hard to set up situations that are healthy and effective. And when I am the partner I try to keep a balance between parenting and partnering. When things get out of whack I try to change.

How do others manage the partnership dilemma?

Picture from here.

Surprise, Surprise: More R-Word

Yet another public figure resorts to maligning people with cognitive disabilities when the chips are down... there's a shock.

Two thoughts:

First, isn't it fortunate that Mr. Emmanuel chose the r-word and not the n-word or hate words about some other minority to spout when his intellect deserted him?

Political careers have ended over those.

Second, you really can't get absolution for slurs toward seven million Americans and their loved ones from Special Olympics. You just can't.

Especially without meaningful (painful!) penance.

Want absolution?

Do something that matters with the actual community you offended.

And...

Shut. Up.

You can read about the incident here, Special Olympics' response here, Arc's response here.

Please Pray for this Baby

This poor little guy is having a rough week.

He was born in August and his mom used to babysit for my kids. He has Down syndrome and a heart defect for which surgery is scheduled.

But, that said, this little guy has done better than expected from the get-go. He was discharged from the hospital earlier than predicted as a newborn, nursed better than they said he ever would, and gained weight better than anyone thought possible, and in spite of our back-and-forth weather he hasn't even been sick...

Until now.

Through the end of December he received a montly injection of medication to prevent RSV (a potent, highly contagious virus responsible for the common cold and more.) A nurse went to his house to administer it to keep him out of the germy doctor's office.

First of the year his dad's company changed insurance carriers and the new company dragged their heels about whether or not the medication would be approved (the med costs $1000.)

Two weeks after the med was due the company finally approved the drug (though not the nurse to administer it.) The drug has been ordered, but takes a few weeks to come in.... so no January dose will be happening.

Saturday this sweet little trooper was admitted to the ICU in our local hospital... (his grandmother sent me this picture and said I could post it.)

And what virus has he been diagnosed with??

Guess.

Please pray for him.

(And forgive me, but $1000 doesn't seem like that much at this point....)

(Photo of a sweet baby boy with medical tubes in his mouth.)

Medical Profession, Heal Thyself. Now!

When my oldest daughter was 11 days old she got sick. She was logey, wasn't feeding, was sleeping (which trust me, was wrong.) She didn't have a fever, but she just was not right. I called the doctor's office and the person on the phone told me she understood my anxiety being a new mother and all, but I should just hold tight and try to give her more fluids, especially since our own doctor was off that day.

A couple hours later I called them back and that phone lady heaved a heavy sigh and said, "Okay, you can bring her in if you can't handle things."

I packed her and all the stuff you have to pack to mobilize an infant. All the while telling myself that I was NOT being stupid and I was doing the right thing, and even if I WAS wrong it was better safe than sorry, and d---mmit I AM handling things!!!! This IS handling things....

We were with the pediatrician for about 5 minutes when he walked us over to the emergency department of the attached hospital for a spinal tap. She was admitted for meningitis...

And when my youngest daughter was having seizures in the arms of a neonatologist (who is also a dear friend) that same office staff reluctantly agreed to see her only after I insisted... She was tested.

Was she seizing? Of course she was...

Our doctor changed office shortly after this, which is the only reason we are still with her.

All of that is ancient history of course.

Or so you'd think.

Last week my friend was talking with a mom she knows who is in her 40s. This gal took her 10 year old grandson to a local clinic. This mom/grandmom is petite, looks really young (bless her) and is from a lower SES... She was dismissed out of hand by the physician until she finally said something they understood as meaning 'this wasn't her first time around the block.' Only after that did they really look at the boy. And yes, they found some real problems that needed real treatment.

The doctor then apologized and said, "We just thought you were another teen mom...."

Now I would have pointed out that it was impossible for a 16 year old mom to have a 10 year old child, but this gal is smarter than me.

She said, "What if I was? What about my age would mean that my sick kid wasn't sick???." She told them outright that they needed to treat people better.

And yesterday... yesterday takes the cake.

My next door neighbor's daughter (who used to babysit my kids!) was over and her 4 month old son (who also has Down syndrome, interestingly) was sick. The mom called the doctor to say he was having trouble breathing. The on-call told this first-time mom that he was fine and they didn't want to see him unless he had a fever.

They dealt with that for a little while and then asked if I would come look at him. (I'm a nurse though I work with adults--old adults!) He didn't have a temp, and my stethescope was bigger than his entire body, but he was really struggling to breathe even when asleep... I said I thought I would want him seen if he were mine, and suggested calling the doctor's office again. I said this time tell them you want him seen--don't ask, just tell.

They were sent to an ambulatory after hours center--who called an ambulance. Today he is in intensive care on a ventilator.

I know everyone needs healthcare and no office can see everyone every day. Some kind of gatekeeping is probably necessary, but must it consist of profiling and preclude listening??

There just must be a better way.

Ideas??

Picture from here.

Unexpectedly Effective Advocacy: The Success-Experience

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.


My Aunt Mary Ann, my father's oldest sister lived in our town when I was growing up. She would always say that she was my 'spinster, librarian aunt' which use to upset me to no end. It was true. She lived alone and she was a librarian, but she was also brilliant and engaged and vital, and words like "spinster" used to offend my spirit when I was young.

I would spend about a weekend a month at her house (overnight!!) Not only would she have picked out the best books in the world for me, but we would cook and sew and work on projects and snack on cranberry juice or tea and homemade cheesecake-brownies or lemon bars (or chocolate chips right out of the bag!) And she would talk to me about beliefs and ideals and her philosophies on education and more.

One weekend nothing we touched worked--sewing projects wouldn't go together, we ran out of supplies for some other project right in the middle, and the recipe we were experimenting with for dinner went up in flames. We were both miserable.

On the way to Don and Bob's (One ground round-ONE!), I said that I was surprised that we were going out.

She smiled at me and said, "Terese, what we need now is a success-experience."

Apparently this was not just her idea, but something written about in education articles at the time. The idea was that to be effective you sometimes need to prime the momentum pump with something positive.

Dinner was delicious, and I had to admit the weekend turned around--the next day's projects weren't nearly as disastrous.

This little nugget of wisdom has stayed with me ever since and it is surprising how helpful it can be--in life and in advocacy.

When my kids were little and things would go sideways, ramping things back and playing a game we were all good at, or taking on a task we knew we could conquer would put us back in the mood to try something more challenging.

It works at school and with programs as well. My friend's son demonstrates some challenging behaviors at school. When the classroom team is overwhelmed and jumping to all sorts of drastic conclusions my friend and I often brainstorm about how to make things better. At one point we chatted about success-experiences and she decided to try it. She listened hard to hear what the teachers were saying was their biggest problem. Then she applied her know-how to that problem--just that problem.

She offered the team strategies for addressing that problem. She created visuals, provide documentation and whatever else it took to iron out this one issue. The team was not exactly receptive to her ideas at first, but when they applied her strategies and they worked, really good things began to happen.

The team became energized and started believing that they could be successful with her son. And my friend's credibility as contributing team-member was enhanced.

This is something we both use as a first-line strategy nowadays.

I think it is more effective if you pick a high-impact success (a fulcrum), but if things are bad enough start with ANY success you can get.

The same is true in systems advocacy. Little successes set the stage for bigger successes. Getting simple legislation passed creates relationships within the disability community and with community leaders that can lead to bigger projects and bigger successes.

(Black and white pictue of Don and Bob's restaurant with lots of vintage cars in front from here.)

Book Review: Seven Days at Oak Valley by Ruthie-Marie Beckwith

Well, my copy of Seven Days at Oak Valley arrived in the mail yesterday afternoon and I picked it up, thumbed through it and thought I would take a minute to read the first couple of pages.

It's a murder mystery set at an institution for people with developmental disabilities in 1978. And the main character--the one who figures everything out--has a cognitive disability. The author, Ruthie-Marie Beckwith is a long-time disability rights advocate.

Before I knew it I was on page 50 and there had already been 2 deaths (with hints of others), a couple of scandals and political tangles were afoot, we've seen glaring examples of institutional living and abuses of power, and we have met a handful of compelling characters.

Then I had to feed my family and drive people places...

I am resisting (with all my might) the urge to check the last page to make sure the characters I like make it through to the end.

I don't know how it is going to end, but it's pretty engaging so far!

The Disability Blog Carnivals is UP!

Cheryl is hosting a blog carnival with the theme Holidays. Go on over to see posts of varying holidays and perspectives.

If you are interested in hosting a future Disability Blog Carnival leave a comment for Penny. You can pick a theme or not...

Holiday Gifts (For the Blog Carnival!)

At our house holidays are wonderful. We like the food, the clothes, the decorations, the gatherings, the music...and presents of course, we like those too!

In fact we hate the holidays to end. Jenn told me yesterday that she wants Christmas music back--and this after listening to the radio station that only plays Christmas music, at top volume, every moment that she was home, from Thanksgiving until last Sunday when they went back to regular music. (Personally I am ok with a break from the 75 versions of Frosty the Snowman!)

For us the biggest holiday challenge is gifts for Jenn. She is 16, but a lot of the things 16 year olds like do not appeal to her at all.

She is not close to driving, likes new clothes but doesn't LOVE them, and has no interest in video games or MP# players because they really aren't all that accessible for her (though if we recorded Christmas music... wish I'd thought of that before now!) She doesn't really understand gift cards until she is standing in a store...

She does like movies, but she has tons because that's what folks get her. She likes CDs and books (but at her reading level without being too babyish can be tough too.)

Frankly, she would love toys, but toys would not help her grow up. And she needs to...

She isn't picky, and thankfully she is mannerly, but people want to get her something she will like and be able to use.

This year she got some clothes from her sister and her aunt who are fashionistas so that was good. She got a movie and some books that she seems to like. She got some fancy bath items. She also got a game (not quite a toy, but still fun.)

This year was actually pretty successful.

Her favorite gift?

A picture of Zac Efron to hang in her room (from very cool grandparents!) She explained to the newbies in the house that he was in the movies High School Musical and 17 Again.

"And he is mad HOT!!" she screamed.

I admit watching people's reactions when she tells them about it is kind of fun.

And I know she is not the only teenager to have a poster of him in their room.

Win, win, win!

I am already writing ideas down for next year...

(Black and white picture of a 1951 Christmas tree from here.)

Disability Simulation Exercises Promote What?

I have a very uncomfortable relationship with disability simulation exercises.

Don't get me wrong, I want to like them. They are always well-intentioned. Designers always hope that getting people familiar with the sensations, experiences or equipment of disability will make them more welcoming and understanding of people with disabilities in their lives.

The idea seems sound and it should work, yet most of these exercises--from riding in wheelchairs, to wearing blindfolds, to puppets and role-plays and beyond--just seem to make most participants feel sorry for people who live with disabilities everyday and relieved to get back to their own lives.

Pity and relief are not what I'm aiming for.

I have been puzzling about this for a long time. I know that information alone does not change behavior, and I believe that making concepts experiential improves the likeliehood of student change... Yet these programs just don't teach the things I want people to learn.

For a long time I thought it was the "how" of the experiences that sent folks down the wrong road--maybe things weren't multi-sensory enough, or structured enough or something. But now, I think it's the "what" of the activities that misses the mark.

I have recently realized that disability simulations create the experience of changing from not having a disability to having one rather than the experience of day-to-day life with a disability. Consequently, I think participants get a taste of the emotions that accompany really big changes in our lives. Participants learn that those feelings are what it's like to have a disability.

Well, the emotions of 'big change' certainly can accompany new disability diagnoses (and can be intense.) There can be fear, anger, embarrassment, depression, denial, bargaining and more. For a while things can be utterly frustrating and baffling.

Many people who acquire disabilities through age, illness or injury go through these feelings. Parents whose children are diagnosed with a disability may experience them as well.

But--and here is the kicker--those 'big change emotions' are temporary in disability just like they are in life's other 'big changes.'

And over time most people respond to disability the same way they respond to other big changes.

They adjust.

Eventually people go from saying "I want my old life back" to "Now I do things this way."

Disability simulations just don't impart that perspective. So how do we create that?

What can we change or add to our sensitivity and awareness programs to make the message of understanding stronger?

Here is a link to a new on-line awareness game. (h/t Media Dis n Dat)

What do you think?

See here for another perspective.

Here's To a Grand New Year

I am having a totally spoiled moment. I am sitting on my couch eating my breakfast of oatmeal with bananas and walnuts AND brown sugar (I usually add in some vanilla yogurt instead. But bananas and yogurt together is just like requesting a migraine, and who would do that? So I must have sugar.)

I am looking out at white snow tipping the black trees against the brightening sky and thinking about writing.

Not writing. Just thinking about it. But that's more than I've done in a couple weeks so it feels like progress to me.

So first of all, Happy New Year to everyone in the blogosphere--In hope your year is lovely in all the ways that you hope it will be, and more.

If you are looking for a New Year's reflection, I recommend this post from Ali Edwards.

Also, I am trying something new for accessibility for this blog. I have added Odiogo. You can click the button at the top of each post to hear it read, or you can click the icon in the right column and subscribe on your ipod or whatever... This is an experiment. I hope it will be helpful for people with vision or reading disabilities. Let me know what you think.

I read this article today on Media Dis n' Dat. I think having a suite for families traveling with children with autism is a good idea. I think it would also be marketable for families with someone who has Alzheimer's disease.

I am not resolving to post more because that is a guarantee that I won't, but I will try...

Happy 2010!

(Oops, was going to post a picture, but my camera and memory card just left with my daughter... So I am posting this video made by kids who grew up on my street, hope it makes you chuckle.)

More on the R-Word

You may already know that Sen. Michulski introduced legislation to ensure that future federal legislation uses person first language a couple of weeks ago.

What you may not know is that this story has been playing out in my region as well. This summer one of our county legislators was recorded calling another an 'r-word' during a roll call vote.

Nice, huh?

In early August there was a cross-disability press conference and a protest at a meeting of the County Legislature where I spoke. Here is what I said:

Recently someone in this chamber was recorded using the r-word... and sadly, no one was recorded saying, "Hey, we don't use that word here!"

There is no minority who would accept this sort of disrespect, and the disability community should not have to either.

It was a mistake, I know. And before my daughter was born with Down syndrome I can't say that I "got" disability either. My life experience has taught me a lot.

Fortunately you do not have to wait for life to gift you with disability for you to become aware and respectful of disability issues.

There are many ways you can learn about disability and many actions you can take to improve yours and our community's awareness:

*You can seek training from any of the many agencies that support people with disabilities in our area.

*You can support agencies and people with disabilities personally and through legislation.

*Most of all, you can get to know people with disabilities. Without them your knowledge of the strengths and needs of our community is incomplete.

If you follow these steps a mistake like this will never happen here again, and the disability community and those that love them will thank you.

In closing I would like to quote Eunice Kennedy Shriver who founded Special Olympics and died yesterday. These are the kinds of words we want to hear from our leadership about disability:

"You are the stars and the world is watching you.

By your presence you send a message to every village, every city, every nation.

A message of hope.

A message of victory.

The right to play on any playing field? You have earned it.

The right to study in any school? You have earned it.

The right to hold a job? You have earned it.

The right to be ANYONE's neighbor? You have earned it!"

Thank you.

This week the Monroe County Legislature is slated to introduce Person First Language Legislation stating that future legislation will be crafted using person-first language. I wasn't able to be there last night and I don't know what happened.

I'll let you know how that goes!

(The video is a bit long, but really worth watching!)

Bits and Pieces

To start with, a funny story: Jenn was looking at a doll the other day. It had kind of a thick body and a screw that held it together right in the middle of the abdomen so my daughter thought there must be batteries and asked me how to make the doll talk. I looked the doll over and it didn't have batteries after all and I said she wasn't a talking doll.

Later I heard her tell her sister about the doll. She said "That doll doesn't talk. We need to get her a dynavox!"

(FYI: a dynavox is a voice-output communication device. Several of Jenn's friends use them.)

New York Times: Gary Presley, author of 7 Wheelchairs, blogger and FB friend had this essay in the New York Times last week!

Disturbing Fact: New York has over 6000 people on its waiting list for adult services. Check out your own state's statistics and sign the end-the-waitlist petition.

New blog: Check out this new blog by Penny Green. She is a mom. Sadly, her son with Down syndrome died 20 years ago from heart complications. She is from the UK, and an activist for folks with Down syndrome--especially those with heart issues. Stop by--and like all of us, she loves comments!

Finally: What do you make of this?

The picture is of my daughter wearing paper sunglasses--don't know why... Funny, my sister-in-law didn't send me the pics of her wearing them... :)

Teaming for Success

OK, I'll admit it. When I take my car to the shop I have a brief conversation (what's wrong?), leave the keys and head home. And when I go to pick it up I ask almost no questions, nod a lot at whatever they tell me, pay and leave.

I know very little about cars, expect the professionals just to 'do their job,' and I'm out of there!

My husband, on the other hand, has made it his business to know a lot about cars. He chats with the mechanics before, during and after any work. He discusses products and possibilities and knows exactly how the decisions made in the shop should play out on the road.

He listens, he learns and fits all the advice and information he gets from the car mechanics to figure out what to do for which car, and when to do it as well as which cars to keep and which to replace. He incorporates all of what he learns into an overarching transportation plan that he has in mind.

And who do you think gets better service from the mechanics?

Me with the 'dump and run?'

Or my husband who makes every mechanic part of his car care team?

My husband. Hands down.

Because I throw money at car problems where he builds a relationship and a team...

Teaming up with various professionals and experts is an incredibly useful skill for parents of kids with disabilities and people with disabilities to learn. It's an approach that allows people to make full use of the expertise and skills of others within their own plan and vision for their life.

Teaming makes the professionals you work with more effective as well.

For example, your child's OT will be much more successful if they hear from you that her hand movements are attempted signs, not "random, bilateral waving movements, possibly for stimulation." (Yeah, she was signing 'milk.' She was thirsty.)

And, your physician will be able to do more for you if you DISCUSS the medications you don't intend to take with him. Rather than just not taking them. (Yes, I am talking to YOU!)

Teaming, done well, is a good approach whether you are working on health, educational, transportation, legal, community participation, employment or some other issues.

Tips for successful teamwork:

* Engage and stay engaged. You are the team leader and you "hold the vision," do not let go of this. Set the tone of teamwork from the beginning. Give input, strategize with people and participate in carrying out the plan. Do not disengage, and do not sabotage the plan. When things aren't working, tell the team first to allow for revision.

* Communicate openly. Add your meaning to discussions, give more or new information, keep people oriented on your overall vision, disagree--respectfully and without anger.

* Recognize and set boundaries. Everyone working with you is a team member, but not every team member needs to attend formal meetings--in fact, many can't or won't. This is fine. People's association with you can be enough to create teaming. Respect people's time and understand that some associations are time-limited or situation-limited. (For example, the car mechanic is only 'on the team' when the car needs service--and only my husband will talk to him/her... ever!)

* Respect each person's expertise. Let them do their job WHILE contributing your own info. Respect your own expertise as well. Expect to contribute.

* Diversify your team. New ideas, possibilities and perspective come from NEW people. (Read Never Eat Alone by networking guru Keith Ferrazzi to learn more about this! Chapter 11) Diversifying should be a thoughtful process, but it is necessary. You already know and have access to the resources of your closest friends and family. Grow to grow.

What other tips do you know?

Picture from here.

Advocacy is a Lifestyle

My kids have a friend who has trouble with anger management. When things are fine with this kid, they're fine. But when he gets angry, he loses control--and this is a serious problem.

Not too long ago my daughter told me that this young man was no longer going to have this problem. He had decided. From now on, no blow-ups. My kids were very upset when I didn't seem convinced.

"You just don't believe in him!" they said.

"Actually I do," I replied, "but I don't believe in his method."

My kids were mad, but finally asked what I meant. I made an analogy (I'm like that!) I asked them if they thought I could bench-press 200 pounds... they of course said no and rolled their eyes.

"But what if I tell you that I have made up my mind that from now on I would be able to??? Now can I?"

"Ummmm, no."

Of course, there IS a way I could become able to lift heavy weights, but willpower alone won't do it.

If I want to be a weightlifter I need to have a habit of daily lifting--starting with the small weights, and this guy needs to start a habit of dealing with frustrations--also starting with the small ones. (And I do believe he can do it!)

Well, some people approach disability advocacy the same way this young man wants to manage his emotions.

These folks see "ADVOCACY" as a specific set of tools and a linear process that a person implements only during certain (bad) events.

They believe that advocacy begins and ends when a problem arises. They look up a bunch of laws, march in, beat the opponents with a stack of regs, and walk away. They don't like advocacy because battles are painful and draining. While they succeed at punching a hole in the armor of entrenched systems, it results in a lot of turmoil.

While I believe in full-blown legal advocacy when the situation calls for it (and have fully used it when necessary)I also believe strongly in advocacy as a daily building process.

I hold the belief that disability is fine and does nothing to diminish a person's value or rights.

I assert this belief in big and small ways every day, and my little relationship-building-while-I-advocate steps are every bit as important to my child's success as anything that was ever written in a lawbook.

If I am effective sometimes I can prevent the big battle (without capitulating either,) And when I must have the big battle it's these smaller, more connective efforts that help the battle-scarred team become functional...

It's almost impossible to succeed by just forcing a system to do what you say and walking away.

Getting to know your school's systems (can't just stop at the PTO, I have found!), engaging in your neighborhood, speaking up in the check-out line, writing letters, fostering relationships, correcting misinformation, writing e-mails, helping people understand your child or yourself, blogging, nurturing relationships with other people with disabilities and their families (even when there is no trouble), and more, all count.

Each daily effort not only makes you a stronger advocate it strengthens your child and their position in the world.

Picture from here.

Curing Down Syndrome?

This is a picture of my daughter after her new haircut--she had enough cut off to make a Locks of Love donation.

By now I am sure you have heard the news about the Mouse Study on Down Syndrome.

Actually, Dr. William Mobley spoke about this study at the National Down Syndrome Congress Conference last summer in Sacramento. Dr. Mobley gave a really clear explanation of the study and, probably because he was speaking to families, introduced the researchers who were working on the study.

The science is fascinating... The ramifications--to me anyway--are unclear.

So, will we be medicating our daughter???

Not anytime soon.

I REALLY do not believe in taking new medications--especially new medications based on new science. After all, Hormone Replacement Therapy, Fen-Phen and Thalidomide all seemed like good ideas at the time.

I will, of course, make exceptions when something is life-threatening, but a cognitive delay simply isn't.

And Alzheimers? Not an issue for another 30 years or more (and it's only a risk factor.) By then, Alzheimer's may well be cured for everyone--this study may well point the way.

So we will wait.

This may present some new and interesting opportunities, time will tell.

But there are a few things this is NOT:

**THIS IS NOT URGENT

Cancer needs a cure. Down syndrome? Not so much.

**THIS IS NOT AN EXCUSE TO ACT LIKE A JERK

One of my friends has already been berated and labelled irresponsible and negligent by another parent for expressing her belief that medicine does not hold the answers for her son.

Negligent and irresponsible for having a different point of view about a medication that does not even exist yet???

REALLY???

One woman who really wants me to medicate Jennifer won't immunize her own son...

Yet I'm not calling her names...

Rein it in, parents! LEARN from your experience of having a child with a difference. Diversity and choice are good. And, it's disrespect (far more than any medical condition)that turns a mere diagnosis into a "handicap."

**THIS IS NOT HELPING DISABILITY ACCEPTANCE

I fear that the implication that we'll just eliminate differences like disability rather than accept, adjust to or welcome them is not making the world better--for any of us.

Sigh...

For somethng truly beautiful, read this.

Don't Dis Ability

Back a few years ago, B.B. (Before Blogging!), I was chatting with an acquaintance who was passionate about AIDS/HIV issues. She told me about this thing called blogging and that she was thinking about starting one. After our conversation I went home and set myself up to blog too.

I ran into this woman recently and asked her how her blog was going. She told me she had never actually started one.

Turned out that she had gone home after our conversation and talked the whole thing over with her husband (a web designer.) He had told her that she really needed a website before she started a blog, and before she could have a website she would need to be competent with HTML, and she would need a marketing plan and several other skills and THEN she could write a blog.

Her hubby had told her that YES, she was a pretty good writer, but writing is "just the tip of the iceberg."

She did try her hand at learning some of the HTML stuff, but found it complicated and uninteresting so she had stopped.

So, yesterday I wrote my 200th post and she didn't--despite the fact that I also only had the "splinter skill" of paragraph construction starting out. (No, I did NOT mention this to her!)

The difference is that I VALUED my splinter skill and looked for ways to turn it into something, rather than DEVALUING it because it didn't come in a package with every other skill known to humankind.

And the fact is I have learned several new computer skills from blogging... way more than I would have without it.

How many valuable and exciting things are nipped in the bud by this sort of de-valuing?

Lots. For everyone, I'm afraid. More, if for those with a disability.

When my son was younger there was someone in every team meeting I ever attended who wanted to exempt themselves from dealing with him, or deny him opportunities--in spite of his considerable language-based skills--because of the things he could not manage.

I spent years taking the skills the school labelled as "splinter skills" (and therefore meaningless) and re-framing them as "bridging skills."

I was constantly pointing out that things like language skills, which didn't interest his math teachers, could be used to improve his math skills...

The same with my daughter. She has great decoding skills and comprehension lags, so she isn't actually reading, according to some folks.

Yet, I find that when I am listening to her read and her understanding derails, if I hear her mention something like a character's purse, for example, I can draw a purse for her (adding a visual to her de-coding) and she will orient immediately to what she is reading. Her 'meaningless' splinter skills are the bridge to comprehension.

My friend's son loves to 'show off' according to his team. If his language skills were stronger they would call it 'performing.' My friend, on the other hand, works to use his love of an audience combined with his strong visual skills to insert story elements into his routines... thus turning his 'showing-off' into communication or story-telling.

Another friend, whose son is not diagnosed with a disability "has such great ideas, but he's so immature," according to his school. First of all, he is 17--of course he's immature! But wouldn't implementing one of his ideas be a great way to increase skills and maturity?

Reject the rejection! Embrace yours and your kids' skills--make bridges of those splinters--and see where they will take you!

Picture from here.

Post # 200

OK, I just have to get this post over with. I have put so much pressure on myself that I can't post at all because my 200th post should be SPECIAL, don't-ya know?

Forget it! I can't be that special. So here is a picture taken after my son's play this weekend.

This costume kills me. All weekend long I told him he reminded me of a turtle... so I found this picture of the turtle I meant:




He looked at it and said "Duck and Cover!" just like they did in the movie.

He's seen the movie.

In Social Studies.

Yes, my childhood is now being taught in history...

This is just wrong.

(Wikipedia says this movie was produced in 1951--I was not alive then, yet I remember seeing this cartoon as a child... strange.)

A couple of other bloggers have celebrated blogglestones recently. Congrats to Terena at Gravity Check who celebrated 111 posts this week, and to Louise at Output, Comprehension and Visualization who is celebrating her 1st!

Picture from here.

My Hopes for Glee

I have such a mixed bag of feelings about the TV show Glee... My two older kids have always been vocal music-theater-show choir folks, or La-La's as they are called 'round here (the instrumental musicians are called Band-o's, fyi.) They love the show. They love the music and the mash-ups (where they blend 2 unrelated songs & styles into one performance), they love the dance and they LOVE the drama.

I have gotten into watching it with them. The music and dancing are great and the stories have led to lots of conversation.

This week Glee put the whole cast in wheelchairs and introduced two characters with Down syndrome... While the ideas of team-building and of walking a mile in someone else's moccasins aren't totally awful, I had my issues. Naturally!

First, disability simulation exercises usually lead to more pity than understanding (you can tell by the things people say when they are over--more about relief and feeling bad for people, rather than about empathy and feeling more like people with disabilities.) Secondly, having seen professional wheelchair dancers, the performance was kind of one-dimensional...

My daughter saw the show before the rest of us and her concern about wheelchair issues took a definite back seat to her anxiety about what was going to happen between the cheerleading coach and the young teen with Down syndrome.

My son, the actor and I have been discussing whether an actor who can walk should portray a wheelchair-user. He points out that acting is all about portraying people you aren't... He pointed out that he's played a farmer, a skeleton, a soldier, a student, a drunken businessman, and several variations of old men, and some really disturbing evil characters. He's only played a teenager once and that was a boy from the 1940's.

We have talked about blackface, about the percentages of disability in the real world vs. that on TV. And the percentages of average-looking people in the world vs. those portrayed by Hollywood...

As I say the conversation has been interesting. And unresolved... but that's how discussions with teens are!

Interestingly my blog-friends who use wheelchairs hated the show (see here) the bloggers who have kids with Down syndrome liked it (see here and here.) As Wheelchair Dancer points out, a consistent disability message is hard to find, and heirarchical thinking is often accepted--or even promoted--within the disability community itself.

I myself think the show has potential for disability acceptance. They are willing to 'go there' with tough subjects (as evidenced by the ongoing story about the gay student and his father... and all the teen trouble that's rampant, etc) and they don't lose their sense of humor or style as they do it... Kids LIKE the show!

IF they could come to understand that they don't have the whole picture of disability and look outside themselves for info, I think they could be awesome. Some say it's a big IF... we shall see.

To start with:

*They could have the teen girl with Down syndrome pay back the friend that bought her a cupcake--or better yet, lend her some $$. She should be a contributor, not just a recipient.

*They could introduce the kids to some REAL dancers who use wheelchairs.

*Lots could happen with the teen with Down syndrome... and with the big sister (though even if she must live in a nursing home she should still be and about, unless she's sick...) They also need to watch the 'childlike' stereotype.

*They would need to stop the remarks about "Never being able to get up... Never not be disabled... etc..." Gag me. Pity--for self or others--is not a viable life-strategy.

*They could also play up the realizations that many of the kids voiced that using a wheelchair lowered their status. Should it?? Um... no... but it does. That could be explored.

*There is lots of story potential about the difference between accommodation and unfair advantage. It is tricky stuff, but they worked that in with their "Diva-Off," I think they could handle it... IF they got some real input from the disability community.

A lot of this could be woven in with the other story-lines... And finally...

*How's about a Glee-ADAPT mashup??? :)

Just my thoughts!

Advocacy Skills: You Too Can Give Testimony

Yes, you. Yes, really! Trust me! :)

As mentioned in my last post I gave testimony at the NY Senate Finance Committee Budget Hearing on Monday. I learned to give testimony during my Partners in Policymaking training and I learned even more Monday. I traveled with a friend of mine who was scheduled early in the day and I was scheduled later (even though I signed up before she did!) I ended up being the last speaker of the day so I pretty much heard EVERYTHING. It was a long day.

First, the basics: Many agencies or branches of government hold hearings or have opportunities for the public to speak their piece. I have attended hearings hosted by the OMRDD, Department of Education, County Legislature and more. You can learn about these opportunities from connected friends (get on an e-mail list or 7!!!) or from agencies' web pages. Regional budget hearings are a new innovation in NY--a very positive one, I think.

Hearings are held when a group or agency wants to hear from the public either to guage sentiment, gather information or demonstrate the existence of support/dissension on a topic. They will announce the hearing and often include a list of topics they are interested in. You don't need to address all of them--just what interests you.

The announcements also include things like how much time you will have to speak, whether or not you need to register and whether they want copies of your testimony (bring some anyway and give them to the clerk even if they don't formally request them.)

Giving testimony is really a good type of public speaking--you usually have only 2-5 minutes and you are EXPECTED to read it.

People generally begin by thanking whoever they are talking to, introduce themselves, give the body of their thoughts, and end with a call to action (telling the panel to either do something or stop something.)

After listening to way too many folks talk the other day I have some other pointers to add:

First a RULE (NOT a pointer!!!) Stay within your allotted time. Write your testimony, practice it and edit it until it fits. Do NOT go over your time. EVER!!! If you do I want you to imagine my pointy elbow in your side--that's right, a little virtual negative reinforcement for you. Because I care.

I know--you're passionate. I know--you have important things to say. Guess what?? Everyone there is passionate and all the issues are important. Once time has been called, no one cares about your ideas or issues anymore. They just want you to go home.

That is not the impression you are trying to make. Cut it!

To their credit the Senators remained pleasant and engaged all day. I can't imagine how. I did not catch any of them dozing or rolling their eyes... very impressive, actually.

Be memorable. There are a few ways to do this. You can incorporate some short, quotable statements or sound bytes in your talk. Don't overdo this or you will sound like an advertisement rather than like testimony, but make your take home points stick with folks if you can.

Tell your story. An agency director I know elected not to go to the hearing because he thought hearing from parents would mean more. In retrospect, I think that was a good call. There was one mom who told the heartwrenching story of her child's behavioral needs and the services that rescued her family. She had the whole room wiping their eyes--I would not want to be the legislator who cut her program! I don't even know if she ran over time, that's how engaging she was.

Connect to your issue. Use word pictures and examples. Try to touch BOTH your listeners' heads and their hearts.

Numbers. Now I admit I hate numbers, and it is likely that people on the Senate FINANCE Committee don't hate them as much as I do. Yet, sitting in a room hearng list upon list of numbers kind of makes them all run in together. Give a few salient numbers. Give your numbers some context. Someone talking about libraries pointed out that their user numbers were greater than the attendance at the Buffalo Bills and Sabres games... And even I still remember it.

Delivery. Speak with some enthusiasm. And as much clarity as possible. Edit enough that you don't have to rush. You don't need to be a master-performer, but enthusiasm and blahness are both contagious. You want to generate enthusiasm (Enthusiasm doesn't just mean being happy-happy. Passionate frustration works too.)

Hyperbole. I really didn't see this Monday, but I have at other hearings. Don't be over-the-top in your manner or descriptions. You are trying to be credible, not generating market-share for your talkshow. Be compelling AND credible.

Structure your statement so that you can cut out pieces if your point has been made repeatedly or if they decide they need to shorten everyone up for time (though if they just turned off microphones afer time was called this would not be necessary!) Journalists recommend the "inverted pyramid" style of writing. I don't do that, but I do organize things in chunks I can remove if needed.

Practice what you have written. Fix things that just don't sound right. I wrote about dismal employment rates, my mouth really wanted to say 'dismal unemployment rates.' After flubbing it 4 times I changed it... it was SO much easier that way!

Written testimony. Bring copies of your testimony--and other supporting documentation--for the committee even if they don't ask for it. And include contact information. This way they have something to read later if they are so inclined and if you are cut short they still have your whole spiel to consider.

Change it up. If I go to another hearing about this I will add different points (like, no one mentioned that Medicaid dollars all get spent in the local economy...) Speaking to the same senators you would want to set a familiar tone, but not be totally repetitive.

Supersize it. If you spent the time writing testimony it should be USED! Blog it. Put it in your group's newsletter. Turn it into a letter to the editor... send it to legislators who weren't there... Come up with your own ideas on this. Do not ever waste efforts!

It isn't difficult... it is over in 2 minutes... it can make a difference. Try it!

This picture is my friend Jackie ready to give her testimony.