Thursday, December 10, 2009

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!)

Wednesday, December 09, 2009

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... :)

Tuesday, December 01, 2009

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.

Monday, November 23, 2009

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.

Saturday, November 21, 2009

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:


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


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???


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."


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.


For somethng truly beautiful, read this.

Thursday, November 19, 2009

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.

Wednesday, November 18, 2009

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.

Saturday, November 14, 2009

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!

Wednesday, November 04, 2009

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.

My Testimony at NY Senate Finance Committee Budget Hearing

On Monday I gave testimony at the NY Senate Finance Committee Budget Hearing in Buffalo. It was a long and interesting day... I will have more to say about that tomorrow.Here is my testimony:

Thank you for the opportunity to speak to you this afternoon about our state budget.

As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.

As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.

I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.

The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .

Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?

Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.

Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.

People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.

These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.

As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.

Thank you.

(I took the picture from the back of the room... you can see the crowd and the senators on the stage. In the crowd are many folks in orange--they are from ADAPT.)

Monday, October 26, 2009

The Disability Blog Carnivals are Baaaaack!

Disability Blog Carnivals are a collection of links to posts by various disability bloggers on a topic. Well, after a bit of a respite, a new one is up!

This one is on the topic of Disability and Work was put together by Liz Henry. Follow the links for some good, thought-provoking posts as the National Month on Disability Employment Awareness winds down.

Sunday, October 25, 2009

What Can We Do??

Governor Paterson suggests that the way to fix New York's financial woes is to cut funding to the OMRDD (developmental disabilities) and to the OMH (mental health) by 10%. When you take into the loss of matching funds this will add up to something like $375 million to the agencies that provide care and services throughout the state in this fiscal year...

As a solution our Republican legislators have proposed that NY cut Medicaid--victimizing the exact same population (with the addition of the elderly...)There is plenty of discretionary spending in the state, but THIS is where we begin.

I am disgusted.

I talked about why we'd advocate in my last post. Now, I want to talk about how:

1. Write letters, faxes, e-mails. The following is based on info was sent out by The Advocacy Center.

What is the best way to make contact?

By e-mail or fax (because of urgency) - or directly by telephone and in person.

Who do I contact? What if I do not know who they are?

Contact your personal State Senator and State Assemblyperson. You can go here and type in your zip code to get the names and contact information.

Are there others I should contact? Yes. You should also contact:

Senate Majority Leader Pedro Espada, Jr

Senate Minority Leader Dean Skelos

Assembly Speaker Sheldon Silver

Assembly Minority Leader – Brian Kolb

Diana Ritter, Commissioner of NYSOMRDD:

When should I do this? Best if before Wednesday, October 28, 2009

Guidelines for your Letter or Conversation

For Parents, Grandparents and other concerned family:

My name is_____________. My ________(child or other relationship to you of person with a disability) has __________.

For Self-Advocates:
My name is_____________. My disability is__________.

I have received (or my family has) ______________services (please list all examples if more than one) from_______________(names of agencies.) This has helped (me/my child/our family) in the following ways:_________________________(please be specific and name the direct impact it has had; for example – improved educational program, improved learning/grades, obtained employment, improved health obtained access to X,Y,or Z services, etc.).

Please do not cut OMRDD Family Support Services and Local Assistance funding. These services provide important support for children and adults with disabilities, and their families, including services like:

Whatever your family receives. Include things like:
Service coordination
Parent information and education
Professional and volunteer advocacy support to access complex systems of service
Family reimbursement to obtain otherwise unaffordable support

These services save New York State additional expense, by allowing people with disabilities to remain in their family homes or to live as independently as possible without reliance on more costly publicly-funded residential and day programs, and public benefits.

Thank you for your thoughtful consideration

Your signature and address (address is important so they know it is a valid letter).

2. On-line Advocacy:

If you prefer sending your correspondence on-line go here and fill out the form. You can personalize it with your own details--in fact, please do!

3. Go to your legislators' offices. In your home town, or in the capitol. Take pictures for your newsletter, your website, your Facebook page and for your suburban newspaper.

4. Go to the hearings. Rally. Gather (and remember uniting does not require uniformity--join cross-disability actions to be heard.) Invite the media.

5. Keep hope. California succeeded with a class action suit to halt similarly ill-thought out legislation last week.

Picture from here.

Why Even Bother??

OK Folks,

I am getting a little exhausted trying to have this conversation with person, after person, after person, after person... so I am putting this in writing! Please pass it along!!!

The Governor of New York is proposing massive cuts to programs to the OMRDD (developmental disabilities), and the OMH (mental health)offices in NY. These offices provide the structure and funding for most of the services that people in these populations receive in NY.

These are not cuts to next year's budgets, these are cuts in what they have agreed to pay THIS YEAR (don't try this with your bills at home!)

At the same time, members of the State Assmebly have proposed that Medicaid funding be cut drastically... now. Leaving people with disabilities and the elderly high and dry...

We know the state is in trouble-- at this point everyone heaves a big sigh and says


So, with no further ado, 9 reasons to take a stand on this issue for the elderly and people with disabilities today:

9. There is already a waiting list for services for people with disabilities in NY. These cuts will make that list and that wait longer. This system is currently the ONLY mechanism by which most people can receive services.

8. These cuts will not only mean cuts to operating budgets to agencies across the state. As a consequence of these cuts those agencies will also lose any matching funds they receive from other sources. Millions more will be lost to our state... many agencies may be forced to close.

7. These cuts will increase unemployment in NY--both for caregivers and for people with disabilities who rely on care so that they can work, and for those who require support for employment (this after the president has declared October National Disability Employment Awareness Month--is that ironic... or isn't it?)

6. Increased unemployment and poor care for people who need it will both cause a cascade of other problems for the state... all of which will cost.

5. Political Game 'A'. When a "leader" takes everything away from everybody and then gives back to whoever screams he/she emerges a hero.

It never fails:

Some group that doesn't have a voice won't scream so their programs will get cut which improves the bottom line.

AND the leader is seen giving to the screamers...

It's a win-win for any politician... (NY has seen tons of this, but I do not have time to create links for this--I have letters to write!!)

4. Political Game 'B'. The other most common political game is that no matter how many letters, calls, etc that a legislator's office may be receiving the legislator will tell the world
"I am not hearing from _______________" (insert name of whatever group they don't want to listen to.)
They must hear from us and we must make our presentation OBVIOUS to the rest of the world--through media, letters to the editor, and more--in order for our position to be recognized.

3. Political Reality 'A'. If your representation to the legislature is in the minority party, your job is bigger. Not only do your Senators and Assemblyfolks need to hear from you, but so do the Governor himself, as well as any committee chairs and the Minority and Majority leaders...

WE have to make it possible for them to be heard on our behalf.

(Are you listening, Monroe County?)

2. Political Reality 'B'. Our elected officials are politicians. Wheelers and Dealers Extraordinaires! This is their first proposal.

This proposal is the EASIEST (for them.)

It is NOT the best they can do.

Not even close.

If we accept the easiest, we will not get their best.

We deserve their best.

And.... ding, ding, ding....drumroll... fanfare and confetti.....

1. Our loved ones deserve and NEED their best.

(Take another look at the picture at the top!)

It is time to put our state government to work.

Are you psyched? Are you with me??? Are you ready to DO SOMETHING?????

Check back in a bit for a 'what to do' post.... give me a little while, I do not have magic typing fingers! :) But it will be today. The governor is bringing this to the legislature this week--possibly Tuesday.

Picture: NY State Senator Joe Robach at the Flower City Down Syndrome Network Buddy Walk. September 2009.

Monday, October 12, 2009

Ableism: C'mon People, We Can Do Better Than This!

Ruth at Wheelie Catholic posted this story this morning. Katja posted this story this weekend...

Is there an epidemic?

Last week I was grocery shopping and the checkout guy was a wheelchair-user. The lady in front of me got in line without noticing that. Once she did notice she started fuming about how she did not need this.... etc, etc, etc...

I offered to let her out of the line, but she said "NO, why should I change???"

I didn't say another word. This gal was a volatile mess... and I had a stomach ache (wimp, I know... I admit a fear of bullies.)

When she got up to the line she was quite rude to the kid, but my entire plan was to say supportive stuff to him when it was my turn...

Until she blamed him for not keeping track of her charge card (really loudly) and then she found it in her purse...

Then I said--pretty loudly myself-- "So, that was YOUR mistake then??"

She did not answer, after she left the kid thanked me, and so did the folks behind me in line... but I knew I should have said something so much earlier.

Ableism is a belief that the able-bodied are superior to those with disabilities. It is shocking how many people believe this--and how many act on it.

People like to believe they are superior?? They tell themselves people with disabilities are taking something away from them?? People like feeling powerful over other people??

All of the above???

I give up... I don't know what it is.

It is ugly and it is dangerous.

How do you think this study makes me feel? How does it make you feel?

I resolve to speak up more? Will you join me?

Picture from here, by Tim Malone

Sunday, October 11, 2009

Some Things I have Learned about Learning

Over the years working with our kids' teachers I have run into a few glitches in the common beliefs about learning that didn't work for my kids. I thought I would detail some things that didn't go the way I had expected so you could analyze your own programs and interactions and iron things out early.

Organizational Skills: One year my son's team agreed that my son did not have these skills and decided that he needed to learn them. They tried positive reinforcement, they tried negative reinforcement, they tried ignoring the deficit, they tried orgainzing for him and nothing worked. EVERYONE was miserable and frustrated.

After a ton of discussion it became clear that they were treating organization/disorganization as a behavior, rather than as a skill.

After this they started explaining, modeling and giving him practice, the way they would to teach other skills. THEN they started seeing some positive results...

Behavior: My daughter always rode the 'regular' bus with the rest of our neighborhood. In first grade she suddenly started throwing her shoes on the bus. Now, this is obviously a dangerous thing to do--clocking the busdriver, or anyone else, is not conducive to safe arrival... So, they put an aide on the bus for safety. The aide sat with my daughter and my daughter stopped throwing shoes...

One day I ran into her busdriver in the grocery store and I said that I was so glad that we had solved the shoe problem. He agreed that the shoes had stopped flying, but then he said something eye-opening. He said that we didn't really know if she had learned or was just stopped... He was right of course. There is a difference between being good and being controlled.

I called the school that afternoon and we had the aide moved out of my daughter's seat to allow my daughter to make choices, but to intervene if she made the wrong one... A much better plan, if you think about it.

It should also be noted that compliance by itself is not an appropriate behavior goal. One team I know of wanted to make "will not say NO" a goal for my friend's daughter. If she can't say no how would she deal with unsafe situations and people? That was NOT an appropriate goal.

For another disturbing behavior experience read this post.

Flashcards: Testing and teaching are two different things. You can practice retrieving information that someone knows by using flashcards, but you don't TEACH info by asking someone repeatedly if they know something. Enough said?

Reading Comprehension: I learned this mind-changing thought from David Koppenhaver: To teach comprehension let the reader know BEFORE they read what they are looking for. Endless quizzing is testing, not teaching.

You can do this with a beginning reader as you read. Pause and say "What is Junie-B going to buy?" Or "What is Charlotte going to write?" For Social Studies or Science let them see the questions at the end of the chaper before they read the chapter as well as after. Or teach them to ask themselves what they want to know in the upcoming reading...

Think about it, it makes sense. Do you have a better chance finding what you want by sending your kids to just go look around the house for a few minutes and then asking did they find your phone charger? Or does it work better if you ask everybody to look for the phone charger?

Discrete Trials: While this method is popular and effective for many kids, the applications needs careful consideration. For my daughter it seems to make disconnected information silos in her head. For what she learns to be useful to her she needs webs that connect new info with old in meaningful ways--this helps with retrieval. It also makes what she learns meaningful to HER, not just meaningful while being mediated by a partner in a certain proscribed way.

The Fry Word List: When Jenn was younger her team was looking for ways to teach her reading where they could document their results. They spent hours and hours working on this list of 300 or so words... The problem was that this list is made entirely of small words like if and and and the. Not a noun or a verb among them. It is totally boring. And after hours of tedium, when you can finally read the whole list there is not a single book you can then pick up and enjoy.

A lot of time and effort, excellent documentation, but no meaningful literacy gained. Another activity that only had meaning when someone else was there--if you found her word cards out of context--say on a bus seat--they would mean nothing to you or to her.

3x5 Cards: These are the bane of my son's existence. Teachers REALLY love them. My son can't write on them. He can't jot notes on little bitty cards and by the time he has he has memorized his note and doesn't need the card. Every year we have to discuss this. Every year. When sitting in meetings it is hard to think of alternatives. One can copy a page (using a copier)and highlight the needed info. One could do lots of things on the computer...

Readiness: It's not all it's cracked up to be! One of my son's teams wanted to remove him from the strong academic classes because he couldn't keep up with handwriting (pointing out that Stephen Hawking has "handwriting difficulties" yet still makes use of his education made everyone chuckle and re-think!) Readiness seems like an important concept, but even if my son can never handwrite well he will build his life on the info he has learned. We can teach skills, but we can't stop that info to teach the skills. Ever.

Readiness is also frequently used as a reason not to do things with my daughter--it's a reasonable goal, but should never be a barrier. Whether or not she knows her colors, she should be taught other things. (She does, but I'm just sayin'...)

I hope these examples help you analyze your own situation and avoid some pitfalls. Do you have other examples?

Saturday, October 10, 2009

The Best Part About Down Syndrome...

Down Syndrome New Mama started a meme called The Best Part About Down Syndrome. If you go to the comments section of her post you can read what a bunch of parents have written.

Now, I already included most of my favorite parts in this post this spring and I don't want to be repetitive except to say....

My favorite part about Down syndrome is....


Yes, it's sappy. Helloo-ooo, I'm her MOTHER!

Wednesday, October 07, 2009

Lots of Legislation: Walk through the Web With Me

Now the web on this tour is not like the lovely web in this picture... naturally not.

Our web is more like the one that I walked through on my porch this morning--all globbed up and folded on itself and stuck to me...

Now doesn't that sound like fun?

Seriously though, there is a lot of legislation and government activity going on right now that affects many aspects of living with disability. We can have an impact for ourselves or for our kids if we take action now.

First up, of course, is healthcare:

Healthcare coverage for people with disabilities is a very tricky and delicate proposal. And it not only affects people's health... it also impacts potential for employment and often even where a person with a disability can live.

Healthcare, is of course, necessary for people with disabilities and it can also be expensive. Therefore employers are often hesitant to hire people whose high health needs will make insurance more expensive for their company...

Employeers often need not worry though... even if they did hire someone with a disability and offer them insurance the likeliehood is that the person with a disability would be turned down for coverage because their disability is "pre-existing condition."

So then what does a person who needs care do? They sign on for Medicaid.

The care can be ok depending on your state, your town, your caregivers and all, but now you have to stay eligible...

To be eligible for Medicare and Medicaid you can't have more than $2000 in assets to your name.

So you can't work. At least not much...

This is why so many people with disabilities want a public option for health insurance--something affordable that they can buy on their own. So they can separate their healthcare from their employer AND make a living...

Action: Call (800)828-0498 and ask to be put through to your Senator's office. Let them know that these issues matter to someone you love.

More about healthcare:

Under the current payment systems for Medicaid and Medicare funding is guaranteed for people who live in nursing homes and other institutions and not guaranteed except under a variance for people to live in their own homes in the community.

Now living in your own home is more desireable, AND it has also been proven to be more cost-effective... but that isn't where the money goes. This 'institutional bias' forces many people who could live and work in the community to live in care systems they neither need or want...

What is being proposed under the Community Choice First Act is that the "money will follow the person" rather than the current system of the money going to organizations to divvy up the way they choose. This will allow folks who need or want more comprehensive care in a small or large facility to have the funds for them spent that way. And for the folks who want to stay home, the money for their care can be spent on community-based services.

Action: Check out this website and this website. Then go to this page click on the healthcare reform issue and fill out the capwiz. It will take about 5 minutes...

Now, about employment:

As you can see in this article, President Obama has declared that October is Disability Employment Awareness Month.

Creating employment opportunities for the 65-75% of people with disabilities who are unemployed in this country, most of whom live in poverty (see above) will improve their lives...

It will also improve the economy. There are millions of folks who are not participating in the economy either as worker or as customers because of the unnecessary poverty that is foist upon them.

This is NOT the future I want for my daughter.

Action: Pay attention locally for forums, discussions and events. Participate. Get to know the folks there. Pay attention to barriers and help build bridges in your workplace and community.

And the good news:

Not only can you have an impact on a complex and sticky bunch of issues, but it's actually good for you.

Yep, it's true. Read this article.

Now, aren't you glad you stopped by?

Picture from here.

Tuesday, October 06, 2009

Introducing Embry Burrus, Author of Mama and Margaret

Hi, my name is Embry Burrus, and my big sister, Margaret is one of the funniest, coolest people I know. In fact, she is one of my most favorite people to hang out with. She loves to have fun, and is always ready for a new adventure – no matter what it is, Margaret’s up for it! She is also one of the most loving, kind and non-judgmental people I know, too. She shows me everyday what unconditional love truly is. She is the best sister anyone could hope for.

Oh, and by the way, she has Down syndrome.

That used to be the first thing I would tell people about Margaret, as if I needed to “temper” whatever I said about her with those words: She has Down syndrome.

But now, I realize that the fact that she has Down syndrome does not define her at all. People don’t like to meet Margaret and hang out with her because she is all of those things and she has Down syndrome; they like to meet her and hang out with her because she is all of those things, period.

What an awakening that has been for me—one of the many things I’ve learned from being Margaret’s sister.

I realized several years ago that there was a wonderful story in Margaret’s life, and in the journey that I have taken in being her sister, so I’ve written a book about her, and our now 90 year old mother. If you’d like to meet both of them, please visit my website .

I look forward to meeting everyone on this blog, and thank Terri for the opportunity to contribute my story!

Saturday, October 03, 2009

October is Down Syndrome Awareness Month

I am not going to promise 31 posts about Down syndrome this month because there are just too many things I want to write about, but I do have a few treats planned... Stay tuned!

Friday, October 02, 2009

Shedding a Little Light: NVLD Strategies That We Have Tried

Since my son's diagnosis with Non-Verbal Learning Disability in the 4th grade we have done a lot of learning.

When he was diagnosed I turned first to the literature... this turned out to be a huge mistake. Not only is much of the literature distressingly negative (I actually threw one book away so my son would never see it!)The literature also offers pitifully few useful strategies.

I did eventually find a book I liked (see right sidebar.) From this and from our experiences with our daughter we found/developed some things that worked for my son--ways to improve skills and ways to mitigate or accommodate weaknesses.

I know each person is individual, but thought if I shared the way we analyzed situations others could build on them.

1. Begin by trusting yourself and paying attention. You can figure out ways to approach most issues.

2. Analyze your situation. I know, for example, that many of my son's difficulties come from integrating two tasks at once. I know that if I can figure out the words to say he can understand a lot. And I try to know what motivates him--and what doesn't!

3. Figure out specifically what is needed. Somtimes skill practice is in order, sometimes an accommodation is in order--sometimes you go over the mountain, sometimes around.

4. Learn your rights and develop advocacy skills. There are many things you can work on at home, but you will most likely have to negotiate with someone somewhere along the line. This is another learned skill--read, study, practice.

Here are some specifics that maybe you can springboard off of:

Visual skill practice:
-video games (choose strategically.)
-bike riding
-map reading
-folding (laundry or origami!)
-crosswords/word searches
-playing catch

Logic and inferencing:
-Lots of discussion about what would happen if...
-predicting sports, discussing outcomes and what would have been different if...
-comment on movies, tv, other situations
-storytelling and creative writing

(Remember, your child may process best verbally and may do a lot of their thinking out loud. Don't interrupt or answer too many of their questions too quickly if this is the case. A short answer seems convenient, but stops them thinking. Lots of "Hmmm, that is a good question... what do you think??")

Social practice:
-analyze situations out loud
-practice scripts for starting conversations in predictable circumstances ie: phone answering, calling someone, etc (this buys time for processing the unfamiliar)
-discuss what you see on TV or in movies

-explain processes verbally
-have them explain their processes verbally
-when lost analyze where they got lost--one child I know got terribly stuck because they missed the definition of the words sum and product... lots of lost ground, but a very simple solution in the long run.
-Look for teachers who use lots of verbal explanations.

Executive Function (organizing self, work, starting, finishing, analyzing)
-Clear bins for storage if visual memory is poor
-calendars with alarms
-my son can't estimate how long something will take so I tell him he must prioritize by need/due date, (In other words do homework first, don't just leave an hour for it--this is not perfected yet!!!)

These are my ideas. What are some of yours? What strategies have built bridges for you or your child?

The picture is of my son and the Charlotte Lighthouse--not Char-lit like NC, Char-Lot as in part of Rochester.

Wednesday, September 30, 2009

Hope and Non-Verbal Learning Disorder

When you look at the literature that is available about Non-Verbal Learning Disorder you begin to think that HOPE and NVLD are mutually exclusive terms.

This negative portrayal really bothers me. I think it is the result of a number of things, the first being a system that only give grants to researchers who are working on a "PROBLEM." Another is a society that believes in the medical view of disability which tells us that the world is full of 'normal' people and 'not-normal' people and the entire goal of group B (the 'not-normals') is to become like the group A ('normal') people.

To me, this is ridiculous. While the group B folks are hanging out in their petrie dishes being evaluated, no one is noticing that group A is empty...

There are a bazillion people making their way in this world and ALL of them have some sort of difference, some sort of uniqueness and, in truth, some sort of 'abnormality' (most of them have nothing to do with any diagnosis!)

That medical model of disability also teaches that a diagnosis is a rigid, unchanging thing and that the outcomes of diagnoses are solid and immovable.

Well, I am here to tell you: 'Tain't so.

As many of you know, I have three children. Among them is my son who has NVLD and my youngest daughter who has Down syndrome.

Well, here's something you may not know:

People with Down syndrome are living longer, living healthier, and achieving more than the medical profession ever predicted. And Down syndrome is an extra chromosome (21st.) What could be more unchangeable and set-in-stone than an extra chromosome??? Yet lives and skill-sets and other indicators are improving every year...

If this is true about Down syndrome, how could it NOT be true about NVLD??

Well, it is true about NVLD.

More than that, there is no percentage in believing otherwise.

There is an excellent book by Carol Dweck called Mindset: The New Psychology of Success. In the book Dweck says that there are 2 schools of thought in the world.

The first believes in definitive skill sets that do not expand. If you have them, you have them. And if you don't, you don't. Much of the world--certainly much of medicine and education--belongs to this school of thought.

The other group believes in the possibility of improvement--for anybody in any area.

To me, this stands to reason. I believe that there are talents and skills that start some people off well in a certain direction, but I also believe that anyone who works on something--pretty near anything--can improve.

Think about it, I am not athletic, but if I started exercising I could become more fit--all areas could improve: cardiovascular, strength, coordination, endurance... If I worked out regularly and well over time, I could even beocome quite fit. (I am exhausted just thinking about it!

Now, it's likely I will not ever be able to play for the Buffalo Bills (no matter how much they need me!) There are indeed some limits that will not change. In fact, there are LOTS of people who don't get to play for the NFL... with and without NVLD.

On the other hand, could I do more or better if I worked at it? Sure.

My brother is a state trouper which is what he always wanted to be. When we were kids he used to practice observation skills. He would look at a new situation, look away quickly and quiz himself on what he saw and then look back to see how he did. (He wanted to practice guessing how much people weighed but my mother would NOT let him go up to people and ask them!) Nowadays it is amazing how much information he takes in when he looks into a room or when someone walks past--trust me, he wasn't born that way!

All this is to say that a diagnosis is a starting place. And all it does is show a pattern of strengths and needs. Your child can use their strengths, and they can work on the areas where they are not strong, if they want to, and get stronger. Just like anyone else.

I have written before that my son's social skills have gotten more fluid over time, as have many of his physical skills.

Other things have not changed much. Some because he doesn't care to work on them (handwriting--why bother when he can type?), others he just hasn't much impact with--yet.

A growth mindset alone can take you far--add in accommodations and resilience and there are tons of approaches for most any situation.

The issues with NVLD for yourself and your child are real and can be frustrating, but there is still room for growth, there are opportunities to succeed and there is room for hope.

Today, the pep talk. Tomorrow some strategy ideas...

Monday, September 28, 2009

Messages Blog Carnival

Barbara at Therextras is hosting a blog carnival called Messages. A collection of stories of disability parenting and teaching--some smiles, some tears and much to ponder on...

Check it out!

Unexpectedly Effective Advocacy Skill #6: Analogies

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.

One of the techniques I have used to reach understanding with people who work with my kids is word pictures or analogies. Now this must be applied with a respectful touch--like anything else it could be insulting if you are not thoughtful (Obviously insults NEVER lead to understanding--which is in fact why people use them, but I digress... )

Sometimes, with our complex and highly individual kids, it can be hard to get people to understand them. It is common to try reports, evaluations, expert testimony, but sometimes providing information is not not enough to build understanding. (I have blogged about this before!)

When you are negotiating with a team about placement or classroom strategies or with legislators about removing community barriers and information fails to build the needed bridge many folks get frustrated and stomp out.

I would suggest that they have more tricks to try--they aren't done yet.

The next thing to try is a description of the things that are happening now (for example if your child is succeeding in Sunday school but not in Social Studies) or things that are possible if the new strategies or laws are implemented.

This is the time to be descriptive--supporting this with photos and more can also be helpful.

Yet, sometimes this fails also. The people you are talking to don't see what you mean still, they don't see how this relates to them--or they plain don't believe you.

Nope, it still isn't time to quit or throw huge tantrums--tempting though that will be!

Along with all of the above tools I recommend the using of analogies, metaphors and comparisons to add reach to bridge you are trying to build. When a teacher or a legislator is not be able to imagine our children responding the way we say they will or that they should do what we are saying they should, try comparing the situation with something familiar that seems similar in tone.

Over the years I have compared:

*My son's accommodations--which his team saw as cheating--with eyeglasses (I tell the whole story here.)

*My daughter's need for both OT and PT with her need for both mittens AND boots.

*My son's need for separating input from output when he learns with juggling (and my lack of ability to do it!)

*My son's need for teaching organization skills with the way Spanish is taught. (This one started out REALLY heated because they were one day trying to encourage him to be organized by telling him he was smart, the next day they tried negative reinforcement and kept him after school... no one was teaching him what they wanted him to know.... grrrr....)

*My son's learning disability with a scene from a popular movie where someone was walking along through the woods and suddenly fell into a hole and no one knew where the character had gone. Can't remember the movie right now... some army flick...

Something to add to your bag of tricks... let me know how it goes!

Picture from here.

Sunday, September 27, 2009

Glory Day

Saturday was a quiet day at home--boring in my estimation. But when we sat down to dinner my daughter said, "Today was a Glory Day!!"

A Glory Day?? Really? "What made it a Glory Day?"

"I got to listen to my music, watch a movie, read my book, play some games, do the dishes... I like it."

Well, her positive attitude was contagious. I smile every time I think about it.

I guess it was a pretty good day after all!

Saturday, September 26, 2009

Morning Musing

I have been doing some reading this morning. Are these three posts connected? Or is it just me?

Post 1: Dave at Rolling Around in My Head.

Post 2: Al Powers at Changing Aging.

Post 3: Laura Rose at Change Starts at Home.

It is a crisp fall day here--enjoy the weekend!

Thursday, September 24, 2009

Issues, Boy Have We Got Issues! Autism, Texas Institutions and Assisted Suicide

There is so much going on in the disability community at the moment... And if you ask, as I mentioned in my last post, Where Does this Lead? The answers are pretty upsetting...

Let's start with this:

Institutions: Now, just a few months ago the world was horrified by the story of Fight Clubs in Texas institutions where staff goaded residents to fight for their entertainment. And Texas, rather than investing in the tough work of dismantling this system and its culture of contempt and violence REWARDED the system by superfunding it...

Where did this lead?

This makes me ill.

Assisted suicide: Bill Peace talks about England's developing stance that although helping kill someone is against the law, in the case of 'severe disability' it may be understandable and not be prosecuted.

Where does this lead?

Over at Not Dead Yet, Stephen Drake has the sad story of a woman in Arizona with a disability who killed herself and was hailed in the newspaper as a hero for doing so... Disgusting--especially since most of her 'struggles' could have been alleviated by a decent public transit system, affordable healthcare and a caring community...

Pitiful, uneccessary and portrayed--sold--as perfectly understandable.

Where does that lead?

Y'know, outside the disability community, many folks see Down syndrome as 'severe.'

And now another disability organization sells out its constituency for the almighty dollar... They get funded while teaching the world that autism is evil.

Where does this lead?

Will it help parents, neighborhoods, schools, communities and employers welcome people with autism into community life? Will it increase understanding and acceptance, increase funding for things like assistive technology and other things that improve lives for people with autism?

Yesterday I heard a mom say that she wouldn't have her young child vaccinated against H1N1 for fear of autism... does she really fear autism more than death?

Why would she, do ya think??

Here is a disability campaign I like: and here is a place where you can create your own campaign poster (and be in a contest!)

Trouble of course is that pity is lucrative... solidarity isn't. There should be something we could do about that,

In the meantime, pandering for bucks has a name...

Not a nice name...

So what can we do?

We can speak up, we can look for new and clever advocacy strategies, we can be present and visible and heard and expect respect... We can build something better.

If we pay attention and ASK!!!

Where does this lead????

We can be consistent and we can STOP the messages about disability that will lead us places we don't want to go.

On your mark, get set, GO!!!!

We have a lot of work to do!

Wednesday, September 23, 2009

Messages in The Madness

For several years I have worked with a woman who is both an excellent nurse and really good company. She also has a tendency to mix metaphors and create malapropisms that stick with me for years after I hear them.

One of the first I remember was when she was pretty sure about her opinion of a situation, but not COMPLETELY sure. She told me "not to hold her to it with a fine tooth comb." Now I would never have thought to hold anyone to anything with a fine tooth comb... but I do now. So be careful around me and hair tools.

Another time she was suspicious that someone at work had ulterior motives (which I am sure they did.) She told me to be careful because "there's something wet in the water." Of course, everything in water is wet, but I did not mention this to her--wouldn't dare!

But my favorite by far is her frequent assertion that there's a "message to her madness."

She's distorted a phrase, but it isn't really a bad idea.

When dealing with all the chaos: the kids, the meetings, the policy issues, the opportunities, the barriers, the rest of your life, etc, etc, etc... it is a good idea to have a few guiding principles--some message in the madness.

A consistent (though not rigid) set of beliefs can be very helpful... though they can lead to surprising places.

I went to a conference when Jenn was a baby where the speaker taught us all to ask "Where does this lead?" about the big and little decisions we would face in our daughter's life.

So when we consider doing things for our daughter or showing her how to do them herself we try to ask...

When we choose activities...

When we teach and discipline...

When we make plans...

And when we choose programs...

When we advocate personally and systemically...

This year, for the first time, we have chosen a special education program at a special education school for my daughter rather than having her included in our local school for her program. This was an agonizing decision for me--completely shocking in fact, but in the end it was the question "Where does this lead?" that cleared the path.

As we looked at our local high school and looked at the other possibilities available in our community we came to the reluctant realization that she would actually be more sheltered and less independent at our high school than at the special education school.

Our vision for our daughter's eventual life based on her own interests and choices (and not on any system's offerings, rules or shortcomings) has not changed. Her sense of herself as independent is crucial to this vision so we made our choice accordingly.

We believe.

(And if that proves wrong we will change it!! Trust me on this.)

She started there this summer. She likes it and it seems to be going well...

The message stays the same, but the path? That twists and turns. It's madness!

Picture from here.

Saturday, August 29, 2009

Show Me, Don't Tell Me

When I was a teenager my mother pointed out that there are things that people say that work (or should work!) as a warning for the attentive.

The phrase she was talking about at the time was "Trust me!"

"Never trust a person--a guy--that says trust me," she said.

She, was not wrong...

People only say 'trust me' when it is too late--when someone already doesn't trust them. Usually for good reason!

Years later there are some other phrases that I have added to my danger list...

These phrases may be appropriate among strangers for a minute, but among people with longer associations they are warning beacons.

Phrases like "I'm in charge here!" for example.

A stranger may need to ask who's in charge. Your employees or children should know. True leadership should be evident without a repeated say-so.

If it isn't, there's a problem.

After hearing the play-by-play of one of my dearest friends' IEP sagas I have developed a new one:

"We have your chid's best interest at heart."

Yeah, right.

I think they should wonder why they have to keep repeating this.

I think their good intentions should be obvious.

I think they should look at their failure to read the child's evaluations before the meetings, their failure to honor regs and timelines, and their horrible disinterest in strategies that make the child successful in other venues among other atrocities for the reason they're not.

Don't you?

Anyone have other danger phrases??

Friday, August 28, 2009

Ten Tips for Thriving with Teachers

Well now, summer is over and we are off with a bang!

1. Listen! You are looking for at least 3 things.

First, Your teacher's style. Many teachers fall into 2 very general categories. They either see learning as the result of wild discovery or of strong structure.

You need to hear their style and then show them how including your child will meet their agenda. (eg: Providing this____ for Junior will help them fit into your structure... or... Providing this _____ for Juniorette will help the whole class step into a whole new discovery.)

Next, you are listening for their fears. When you hear these you can tailor your assistance to alleviating them.

Finally, you are listening for the political situation they are dealing with. Sometimes administrators do not support teachers--especially those in special education--because of things that have nothing to do with your teacher or your specific child (I know this is not TOTALLY shocking to many of you!)

If you know what the situation is you can provide support--or engage the district to--in a way that your teacher is protected (or at least not endangered)

It requires strategizing, but you can do this. Because you have to. (I know, it's not fair, but it is true anyway... Sorry about that.)

2. Individualize your approach. Some teachers will respond beautifully to portfolios and disability info, others are offended that you don't think they know what to do with your child. Present your information in a way that fits your child's teacher and class.

3. Provide support. Whether this means providing data about your child's disability, or reports from outside professionals, or whether it means making "official" requests, etc so that your child's teacher gets what they need, do it.

4. Inform. A lot of times our kids need things that are unique and hard to understand. Use examples and analogies that people "get." If something you say isn't understood, change. Say it a different way--use examples and analogies--without ever implying 'duh!". If you imply disrespect, you, and your kid, are done. Keep trying. Respectfully.

5. Be as succinct as possible. When you provide data for teachers bullet it. Use sound bytes. Keep it as short as possible.

Teachers have lots of students and are overwhelmed when we hand them text-dense info about our kids (this is why I LOVE Paula Kluth's new teacher guides.)Look for quick, catchy ways to tell folks what your child needs.

I finally learned to say to teachers that 'my son cannot juggle input and output.' In other words, he can't write notes while he listens, for example. This phrase was understood by his teachers in ways that reams of reports never were. This small phrase gave them lots to work with. Then they succeeded. Then they were encouraged to look for MORE success.

Try it, you'll like it!

6. Don't do the work for them. They are educators, you (usually!) are not. Provide the basics and let them come up with the details whenever possible. (Though my daughter has had teachers who never had a plan B--in that case, skip this!)

7. Don't harass. AND, Don't back down. This sounds contradictory, but it isn't. (Or, at least I don't think it is!) Persistent, polite and PERSISTENT! They can do this, they specialize in learning. They want an easy day, but most really do believe in WHY they teach and believe in education. They just need to expand their vision to include our kids... we can help with this. Shame we have to, but we often do--and if we succeed, we succeed for way more than just our own kids. Absolutely worth it.

8. Be patient. Within limits. They may not make the jump to meeting your child's individual needs WHILE you are talking with them. But every thoughtful conversation plants seeds. Give them a reasonable amount of time.

9. Allow yourself to be surprised. Sometimes teachers or programs work in ways that you would never expect... or people who couldn't work with your child in 6th grade are great with them in high school... It is weird, but true. And people who don't get along with me sometimes do fine with my daughter... I am shocked when it does, but it does happen sometimes. If it happens to you, accept it. Enjoy it. Don't try to explain it. You have plenty to fight about, let the things that work, work... even against all odds!

10. Stay focused. It is always you AND the teacher vs. the barriers blocking your child. NEVER you two against each other. They and the administration may try to twist this. Do not let them. Ever. People have to adjust their views, and philosophies, and work days to accommodate our kids and it is easier not to. But if the focus remains in the right place our kids can succeed and surprise (and teach!) entire systems.

These are just my thoughts... What can you add?

Tuesday, August 11, 2009

Astounded by Grief

Keith is in front on the right. My husband is front left. Family camp... Breakfast.

Our family friend, Keith--young, in shape, healthy--was away on a business trip and died. My heart is broken. He leaves a wife and 3 young kids and loads of friends and family who are stranded in the land of faith and pain.

Keep us in your thoughts, won't you?