Hope For The Families

Robert and Martha Perske

At one of my first TASH conferences, I heard Bob Perske speak about Hope for the Families. His book, by the same name, helped me make sense of our family’s new life as parents of a son with the labels of intellectual disabilities, autism and more.

Bob Perske has been one of the pioneers for people with disabilities and their families. In Parallels of Time Bob Perske is seen pictured with giants in our field. He has written many terrific books including Circles of Friends and Unequal Justice, his current work with people with intellectual disabilities caught in the criminal justice system.

Bob is an amazing minister, speaker, writer and just great person. People with disabilities and their families are fortunate to have him in our lives. Martha, his wife, uses her talent to create pictures which spread joy and a vision of inclusion across the world.

Below is one of Martha’s pictures and the introduction to Hope for the Families which I have passed along to my friends, my classes, and anyone who would read it.

Two Friends by Martha Perske

Hope for Families of People with Disabilities

Not so very long ago, you and I were conditioned to perceive persons with handicaps as deviants. They were seen as…

Possessed by evil forces

Carriers of bad blood

A drag on the community’s resources

The products of illicit sex

Subhuman organisms

Too ugly to be seen in public

Objects to be laughed at

A Group that would outbreed us

People with contagious sicknesses

Sexual monsters and perverts

Children who never grew up

Our parents and teachers conditioned us by what they said—or didn’t say—to feel uncomfortable around hose imperfect people. We were led to believe that if we got too close to them, something evil would rub off on us.

Consequently, persons with disabilities were condemned to struggle against TWO handicaps. One was the actual handicap. The other was he additional wounding they received from our prejudices.

Wasn’t the handicap itself enough? Why did we have to cripple them further?

Let me offer one theory to explain such behavior:

Once we believed fiercely that the world was becoming better and better.

And in keeping with this belief, everyone was expected ultimately to develop…

A pure heart

A brilliant mind

A beautiful body

A successful marriage

A high-status job

And live in a perfect society.

Then along came a few defenseless persons with obvious physical and mental handicaps. Their presence rattled our plans for a perfect world as a high wind rattles a loose shutter. We didn’t like that, and the result was that we could not stand to have them around us.

World War II

Then something happened. One country, in an effort to create a super race, started a world war. By the time it ended, the minds of all humankind were trying to comprehend the terrible things some groups of human beings had done to other groups. All of us tried to understand what had happened in places like Buchenwald, Auschwitz, Hiroshima, Nagasaki, London, Bataan, and Corregidor.

After World War II

After World War II, our belief in the gospel of world perfection began to fall apart.

And, we were reminded of some terrible facts.

All of us have gaps in our bodies and minds.

All of us are unfinished.

Some of us can hide our deficiencies better than others.

None of us will ever achieve perfection.

Those of us who think we are closest to perfection may be most likely to drag the human race to new lows.

Today we do not know whether the world is getting better and better—we only know it is getting more complex.

And yet it is an astonishing fact that humankind’s healthy interest in person with disabilities began to mushroom after the Holocaust and the Atom Bomb. One cannot help wondering if there is a connection.

Robert Perske Hope for the Families: Abingdon Press, Nashville, TN.1981. Click here for Robert Perske’s website.

Today, advocates in Ohio, Wisconsin, Indiana and other places around the country are asking the legislature to preserve Medicaid and other programs for people with severe disabilities. The crucial support programs our children need to survive are at risk.

Money is always scarce, but as Bob points out, we have made progress in our values and experiences of including people in the community. We have to believe in hope and better futures for our children.

I am reminded of two quotes:

“Those who do not learn from the past are destined to repeat it.”

“A measure of a society is how it treats its most vulnerable people.”

As parents we understand budget cuts and are even willing to concede progress will be slow, BUT we expect progress!

If you found this interesting you might also like a related article about Remarkable Parents who Never give up.

Keep Climbing: Onward and Upward
All my best,

Mary

What’s Your Take?, Be Brave and Share

Do you think our society values people who are different or have special needs? or, are we still just a drain on the system and resources? Do you think people with disabilities have two handicaps?

If you like this, please retweet and share with your community. Thanks.

Related Articles:

Unequal Justice| Bob Perske

Bob Perske| The Song of Joe Arridy

A Comparison of the Service System and the Community

2012 Article on Joe Arridy “Here lies an Innocent Man”

Hand Therapy| Homework with a Bang

Homework with a bang

Life Long Learning| like it or not.

Six weeks ago I fell and broke my wrist. Bad news is that it hurt like #$@! The good news is it’s healing well and gave me the opportunity to learn more about therapy. Hey, I’m a glass-half-full kind of person, right?

Aaron, my son with the label of autism, started physical, occupational and speech therapy when he was a baby. In fact, therapy was one of the things we won in our due process case with the school district. So, I’ve had years of observing therapists in action. We saw Aaron go through paradigm shifts in philosophies and approaches from sensory integration, NDT (neurodevelopmental), isolated medical model therapy, multidisciplinary, transdisciplinary, interdisciplinary…and others I can’t even remember.

My broken wrist was my first hand *laugh* opportunity to actually be the patient. I am now officially “disabled” I have crossed into the “yet”.

Of course there are many differences between Aaron and my experience:

*Mine is for a short time.
*I can tell the therapist when it hurts.
*I can ask questions.
*I can understand what the therapist is trying to do.
*I can look for ways to practice the exercises.

Because of my injury, I am going to a physical therapist who specializes in Hand Therapy. Hey, this is the day of specialization. I wonder if there is a physical therapist who specializes in “thumb” therapy? Probably is.

My therapist is great. What is really interesting is for the first time I finally understand how all those stairs-to-nowhere and giant pegboards ended up in special education.

In the 70s, when children like Aaron were granted the right to education (PL. 94-142) no one knew what curriculum to use for people with severe disabilities. It made perfect sense to start with the medical model and the exercises used in the therapy rooms. In fact, in the early days, many people thought education would be the cure.

Home: One Pound Weight

Therapy: One Pound Weight

Functional Activities

As many of you know, Lou Brown from the University of Madison, WI is one of my heroes. Not only is he an amazing person and teacher, but his innovative ideas helped win Aaron’s lawsuit, and introduce a “functional curriculum” which impacted all Greater Cincinnati.

Functional Curriculum:

If the person doesn’t do it, will someone else have to do it?”

What seems like a straightforward definition is often confusing to people. For instance. When I went home and substituted a hammer was that functional learning?

If you answered “NO” you are correct.

When a hammer is just a substitute for a one pound weight, it is not a “functional skill.” (BTW I felt ridiculous watching TV and pumping the hammer with claw.)

In a medical model or scientific method experiement, you always isolate and reduce the activity to one element. Exercises are specific to one area, so they can be more easily measured.

Did this exercise strengthen the wrist?

Can the patient lift one pound?

How many degrees can the patient turn their wrist?

After a week of practicing lifting one pound weights, could the patient now lift a two pound weight?

The answer would be clean, it would be easy to chart.

Now, if I used the exercise of lifting the hammer (one pound) to hit a nail, or build a cabinet then it would be a functional exercise. But it no longer requires just one skill. It would be more difficult to chart.

Make sense?

The hammer is a tool. The one pound weight is a good therapeutic exercise for my wrist, but until I give the hammer a purpose, there is no “functional skill.”

The idea of “functional skills” is that a person would practice the exercise many times, as opposed to just a couple times a week in therapy.

For years Aaron and others climbed the stairs-to-nowhere and were swung in nets to build therapy skills.

With a “functional curriculum” Aaron learned to climb the steps in the hallway to go to lunch. He used a swing on the playground at recess. He would practice these skills several times a day. They were real, not artifical exercises done in isolation.

Rotating Wrist Muscles

Rotating Wrist Muscles

Here is the test:

Goal is to strengthen wrist by turning an object.

Which picture shows a “functional” task?

Does that help explain it?

Keep Climbing: Onward and Upward

All my best,

Mary

Comment:

Of course, the peppermill is the correct answer. Can you think of other “functional” activities? Did this help explain this concept.

Related Articles

Dr. Lou Brown: Busy vs. Bored, Life Space Analysis for People with Disabilities

Functional Skills: Use it or Lose it

It’s a Jungle Out there| Inclusion in the Grocery Store

Bob Williams and Advocates at White House

BOB WILLIAMS

Bob Williams is currently the Special Assistant to the Director of the D.C. Department on Disability Services.

Bob served in the Clinton Administration as Deputy Assistant Secretary for Disability, Aging and Longterm Policy at the U.S. Dept of Health and Human Services, Washington, D.C.

I bet Bob had to program that title into an automatic response button on his augmented communication device *smile*. It would take way too long to say, much less spell out letter by letter.

Because Bob has cerebral palsy and doesn’t speak with words, he knows the importance of augmented and alternative communication.

He wrote the TASH resolution on “The Right to Communicate” (click here).

“What if???”

I first met Bob Williams when we were both serving on the TASH Board of Directors. At first, he seems shy but don’t be fooled–his power is in his message.

Below is a poem he wrote when Facilitated Communication first opened the communication door for many people with autism, including Aaron.

What if???

What if
autism is a mistake?

Someone else’s
mistake?

Ours;
not theirs.

What if
autism really is…

Flawed communication?

More ours
than theirs.

What if
the Truth

Suddenly all came
gushing out

LIke vinegar spray
or electric shock
from a Sibis*?

What if
they started handing out Nobels

For humanity’s
inhumanity?

Who do you think
would win more?

Us or them?

What if
autism is a mistake?

Someone else’s
mistake.

Bob Williams

(*The Sibis helmet gives electric shocks to force compliance.)

If you have any doubt about the power of communication, check out Bob Williams as he talks about the ADA and “presumed competence.” In (about) minute 4 of the video he talks about the need for technology to assist in communication.

Health and Disability

Here is a speech Bob gave on Health and Disability (click here).

Linchpin

Bob would be what Seth Godin calls a “linchpin.” He is remarkable and “pokes the box.” He has influenced the President of the United States; laws like ADA, IDEA and the technology act; national policy; parents, self-advocates and everyone he meets. The world is a better place because of Bob Williams.

Keep Climbing: Onward and Upward
All my best,

Mary

Comment:

Did you feel the passion and power of the poem? Any other “What ifs???” in your life? What did you think as you watched the Bob Williams video? Did this make you want to try just a little harder to communicate with people who don’t talk with words?

Related Post: The Right to Communicate| Wretches and Jabberers

Chocolate Covered Strawberries

Mouth watering?

Don’t these chocolate covered strawberries look delicious?

For Valentine’s Day, or any day, what about making chocolate covered treats or gifts for the people you love?

Chocolate Covered Fun for ALL AGES and Abilities

Parents, Special Education Teachers, Directors of Day Programs and Senior Centers: Everyone is looking for activities that are fun, age-appropriate, and allow people with all ability levels to participate.

Taking your favorite snack for a chocolate dip may be the answer.
The costs will vary according to the ingredients, but pretzels and marshmallows are cheap. Of course, if you want to go gourmet, hey, yum.

Partial Participation

photo credit: mbaylor

“Partial Participation is Better than Exclusion from an Activity” (Lou Brown)

Even if the recipe says, “Easy” that doesn’t mean every person can do every part of the activity.

For instance, Aaron, my son with the label of autism, wouldn’t be able to set the timer on the microwave–but he can certainly dip the pretzel in the chocolate sauce and choose the kind of sprinkles for the decoration.

Aaron can’t read the recipe with words, but he could follow the directions with pictures and though he can’t drive to the grocery, he can partially participate by picking out the pretzels and chocolate.

When Aaron was in school and had a speech therapist, one of his goals was identifying pictures of grocery items and finding the item in the grocery aisle. When he had a physical therapist, one of his IEP goals was pushing the grocery cart without hitting anyone in the grocery store. (Not a pretend grocery store in the classroom.) When he had an occupational therapist, one of his goals was to hand the grocery clerk the money to purchase the items and put the money back in his pocket. Aaron successfully learned these skills and practiced them every week in his functional community based program and … every time our family went into the community grocery store.

There are lots of things Aaron can do to partically participate in every activity.

When Aaron is part of the group, when he does purposeful, functional activities, he develops self-esteem, he is a doer. He is not just a passive observer. If he is treated as a baby, or as someone who cannot do anything but watch, then he loses his skills and his self-esteem. The people who think they are being nice and helpful to him, are not–they are actually causing him to lose skills/self-esteem.

This is a functional activity because if Aaron doesn’t go to the grocery to get the supplies someone else will have to do it.

If Aaron is actively involved in the shopping, the decorating, and gives the chocolate covered pretzels as a gift HE MADE–then this activity becomes much more than an easy activity to fill the day. It can become a learning and social enhancing experience. When he gives Grandma a package of pretzels he made, it is a joyful celebration for everyone. You should see his smile

Be Creative: Lots of Ideas

Dip White or Dark Chocolate Ideas:

Dried Fruit (apricots, raisons…)
Fresh Fruit (strawberries, cherries with stems, apples (whole or slices)…)
Pretzel Rods or any size
Marshmallows
Cookies
Graham Crackers
Candy Canes
Rice Krispie Treats

How to Make Chocolate Covered Pretzels:

Activity for All Ages and Abilities

Things You Might Need:

Small candies or sprinkles

You Tube Video Demonstration

Task Analysis or Recipe

Chocolate-Covered Pretzels with Sprinkles

Recipe courtesy Paula Deen for Food Network Magazine
Prep Time: 20 min, Inactive Prep Time: 24 hr 0 min
Cook Time: 2 min; Level: Easy
Serves: 24 pretzels

Ingredients:
• 1 12-ounce package milk chocolate chips
• 1 12-ounce package white chocolate chips
• 24 large pretzel rods
• Assorted holiday sprinkles

Directions:
Place the milk chocolate chips in a microwave-safe bowl and the white chocolate chips in another. Microwave one bowl on high for 1 minute. Remove and stir with a rubber spatula. (The chips should melt while you are stirring, but if they don’t, you can continue to microwave for 15 more seconds, and then stir again.) Wash and dry the spatula. Microwave the other bowl on high for 1 minute, and stir until the chocolate is melted.

Dip one pretzel rod into the milk chocolate; use a spoon or butter knife to spread the chocolate about halfway up the rod. Twist the rod to let the excess chocolate drip off. Hold the rod over a piece of wax paper and shake sprinkles on all sides. Place the pretzel on another piece of wax paper to dry. Coat another pretzel with white chocolate and sprinkles. Repeat until you’ve coated all the pretzels, half with milk chocolate, half with white chocolate, and let dry completely, about 24 hours. (Cover any remaining chocolate with plastic wrap and store in the refrigerator.)

Copyright 2011 Television Food Network G.P. http://www.foodnetwork.com/recipes/paula-deen/chocolate-covered-pretzels-with-sprinkles-recipe2/index.html
All Rights Reserved

Gifts and Favors, Holiday Variations

President’s Day, Halloween, Easter, 4th of July, Christmas Variations

All American Holiday

Gifts and Favors

Stick Pretzels

Paula Deen's Christmas Pretzels

Halloween chocolate covered pretzels

Comments:

Does it make sense that an activity as simple as making a chocolate covered pretzel can be a learning and self-esteem project? Can teachers, parents and directors of day programs make this more? Can they blow the opportunity?

Have you any ideas on this or other projects?

Keep Climbing: Onward and Upward

All my best,
Mary

Other Related Articles:

It’s a Jungle Out There| Inclusion in the Grocery Store

Language of the Heart| Heartaches and Heartsongs

Busy vs. Bored| Life Space Analysis for People with Disabilities

The Animal School| Differentiated Instruction

Test Questions| Inclusion or Segregation?

Teachers| Segregation or Inclusion

Happy Ever Afters| One For The Money

Norm Kunc: What’s Your Credo?

photo credit: qthomasbower

In the post: Caring Community| People First Language we talked about the power of labels, negative stereotypes and the paradigm shift of looking at all people as PEOPLE First!

Today, on Valentine’s Day, I am asking you to think about how you use words:

Do my words cause Heartaches?
Do my words cause Heartsongs?

What are you doing?

WHAT are you doing?

What ARE you doing?

What are YOU doing?

WHAT THE HELL ARE YOU DOING!!!!

The same words can be said in anger or with gentle concern.
The speaker, the listener, the context of the communication, as well as the intent all make a difference.

Parents, Teachers, Coworkers, Friends, Enemies… We have all been misunderstood and misinterpreted. We have all wished we could swallow what came out of our mouths–take back our words. We have all been both aggressors and victims and have given heartaches as well as heartsongs.

HEARTACHES: “What’s that mess on your shirt?”
HEARTSONGS: “I see you have paint on your shirt.”
————————————————————-

HEARTACHES: “NO!”
HEARTSONGS: “Let’s talk about this before you decide.”
————————————————————

HEARTACHES: “Get over here right now!”
HEARTSONGS: “I need you with me.”
————————————————————-

HEARTACHES: “I told you so.”
HEARTSONGS: “That was harder than you thought.”
—————————————————————

In the comment section, let’s share some ideas on how you could make each of the following examples into either a heartache, or a heartsong?

Scenarios: Heartaches or Heartsongs.

1. Sara is eating breakfast. The bus is coming in 5 minutes. She spills her juice while reaching for the cereal.

What could you say that would cause a heartache?

What could you say that would cause a heartsong?

2. Ken wants to help his friend wash the car. He accidentally squirts him with the hose.

What could you say that could cause a heartache?

What could you say that could cause a heartsong?

3. Emily comes home from work. When asked about her day, she begins to cry and says, “Jim doesn’t like me.”

What could you say that could cause a heartache?

What could you say that could cause a heartsong?

By speaking with your heart, you may be able to bring out the very best in people. Give them a chance to talk. Listen patiently.

And of course, there is always the quote: “I know that you believe you understand what you think I said, but I’m not sure you realize that what you heard is not what I meant.” But we’ll save that for another post.

I’m wishing you a day filled with heartsongs. May you have many opportunities to give them and to receive them. Spread the love.

Keep Climbing: Onward and Upward
All my love,

Mary

Comments:

Do you have any examples of heartaches, heartsongs?
Heartaches turned into heartsongs?
Use the examples above, or share some from your own experiences.

Adapted from Project Prepare, Ohio (1995)

Grandma gets a Thong

The twelfth day of Christmas is Jan. 6th–Little Christmas, The Feast of the Magi.

Actually, it’s all the Magi’s fault. They are the ones credited with giving the first gifts.

Based on the number of people in line at the return desks last week, I’d say many people had problems with their gifts. (Actually I could see Mary and Joseph thinking the gold was useful, they could buy a wagon or better donkey, but what were they supposed to do with Frankincense and Myrrh. Myrrh–really????)

I know it is supposed to be the “thought that counts,” but it really is much more. Gifts are a whole cultural phenomenon.

My mother is 89.

Recently she’s had hip replacement surgery and has trouble shopping for herself.

Two months before Christmas she told me she wanted slippers. Slippers it is. I don’t have to guess her gift. And this is great…EXCEPT

Every day for the next month she would call me on the phone (usually at 6 AM because that is when she wakes up and is thinking about slippers) and define what kind of slippers. They had to have rubber soles so she could wear them outside if she wanted. And this is great…EXCEPT

She couldn’t tell me her size. It seems some Large slippers are size 8-9, some Larges are size 9-10. And the manufacture, design, model, production all make a difference.

I went to three different stores and brought her “Pair number one” on Thanksgiving. She didn’t even try them on. Which actually made it easier to exchange them, which is great…EXCEPT

She really wanted black. But none of the stores made black slippers. So, I picked out some navy size 8′s and 9′s and 10′s, and some pink (everything she owns is pink) in a size 8-9, and 9-10. And I figured I’d give her a choice. Which was great…EXCEPT

She decided she wanted slippers that weren’t slip-ons. “Only the devil would make slippers with open backs” and she has had slippers that covered her whole foot, well–her whole life. And, she thinks she has ugly toes, so–none of those slippers with toe cut-outs. So, I boxed up and returned the slippers. And it was great…EXCEPT

The next three stores didn’t have black or whole foot slippers. But they did have navy.

You know where this is going, right?

Yep, I rebought her the same slippers (that she wouldn’t even try on) from the first round. She opened them on Christmas and said they were perfect.

So, it makes you wonder.

Was the gift really about slippers at all?

Grandma and the Thong

The picture above is from a previous Christmas. My sister Martha worked in a lingerie store and gave each of the girl cousins a pair of thongs. They thought they were nice. Certainly something practical they could use. EXCEPT

She also gave one to Grandma.

The gift became an urban legend in our family. It brought down the house.

Even though mom didn’t even recognize the thong as underwear—it was the shared experience with her grandkids that made it the perfect gift.

Which again makes me wonder about gifts.

Aaron’s Christmas Gift and Charity

This Christmas Aaron went to a Christmas Party sponsored by a local non-profit. These are kind folks. Many of the people with severe disabilities are the poorest people in the county and don’t even have family members who can give them gifts. So, this is not only a nice gesture, it is an opportunity for these poor souls to get a little something extra.

This year the non-profit got items donated by local businesses to give as gifts. Over 150 adults with disabilities came to the Christmas Party and Dance.

There are so few recreation opportunities, many of the people put on their best clothes and showed up early. Many more wanted to come, but there was little transportation and they depend on staff–who didn’t want to bother.

At the party, even though they arrived early, there were only chairs for 100 people. So Aaron and Jack, his roommate, had to stand and hold their coats.

Since Aaron has balance problems, and couldn’t understand why he couldn’t sit down (people were guarding their chairs) he started biting his hand and pinching others. Not good behavior at a party.

Their staff person made the sensible decision to leave (even more people were coming in the already over-crowded room). Aaron and Jack were each given a “gift bag” at the exit. Which was nice… EXCEPT

The gift bag had a pair of donated slippers. Yea! I would be laughing too, slippers… EXCEPT

The slippers were size 11.

Aaron wears a size 9.

Now, no one with balance issues is safe wearing a pair of slippers two sizes too big. And, unlike my mother, these slippers were charity—donated. So there was no gift card or receipt, most people had no dutiful daughter, family or staff who cared to make an exchange.

And, Aaron couldn’t understand why anyone would give him slippers he couldn’t use. So he just carried the slippers around the house—making me crazy that good, kind people could be so dumb. After all who is the “intellectually challenged” person here? Did they think they wouldn’t notice the slippers didn’t fit? Or all people wear size 11?

Is “Just getting something to open” the point? Even if they can’t use it?

What is Charity?

If you plan a charitable event and are giving gifts:

Don’t

Don’t just arbitrarily pass out slippers, or coats, or T-shirts with misspelled words.

Don’t give radios with no batteries—because they want to use the radio that minute and staff often won’t be bothered with batteries.

Don’t give them things you couldn’t sell or are broken.

Don’t make your interaction a one-time-event.

Do

Do have a party with chairs and refreshments for everyone.

Do get to know people as individuals

Do think about what YOU would want to get

Do think about normalization, age-appropriate entertainment and gifts.

Do think about transportation and staff and family members

Do consider that the shared experience, like Grandma getting the Thong, may be the best gift ever—no excepts.

Keep Climbing: Onward and Upward

Mary

Comments:

Okay, best/worst gift stories? Am I just being an ungrateful jerk? What is the role of charity? Is it appropriate to give broken, torn things to Goodwill/charity? Only 258 shopping days until Christmas????

Blake Roberts an expert on DECtalk programming

Do You Hear What I Hear?

Do You See What I See?

In 1962, the song Do You Hear What I Hear? became an instant success when its lyrics asked us to hear, see, listen and “Pray for Peace, People Everywhere.” 1962 was a time of fear and uncertainty–much like 2011.

Today, as the year is coming to an end, I invite you to journey virtually to the Middle East–to the land of shepherds and millions of stars Listen and See this new version of a holiday classic.

‘Tis a Season of Magic

Blake Roberts and Pastor Snoopy Botten are musicians and visual artists who have collaborated on many CDs. Both are artists who inspire us to reach for the stars.

Their magic is their vision, talent and… a speech synthesizer with DECtalk software which helps people who can’t sing with words–sing with tech. Those who can’t see–paint with tech.

The result is poetry in motion.

Enjoy!

Do You Hear What I Hear? |Music and Visual Art

http://pastorsnoopi.twigs76.com/songs/DO YOU HEAR WHAT I HEAR.mp3

In Blake’s Words:

Dectalk is a speech synthesizer that can be programmed to sing. I like Dectalk because I enjoy making it sing. Additionally, an almost infinite number of voices can be created with it.

Snoopi is a good friend of mine whom I met on the Internet several years ago. We enjoy working together on the CDs Snoopi has produced over the past couple of years. I did all the DECtalk programming and Snoopi mixed my DECtalk file with the karoake track.

My friend Snoopi is the same Snoopi you know on Facebook.

Snoopi programs Dectalk because it lets people who can’t talk sing like everyone else. I program Dectalk because I enjoy it.

I program songs at the same level of excellence as Snoopi. In fact, I am slightly better in some areas. Snoopi is the best Dectalkist in the world, I am second best. We never intended to be first and second best, we just are.

In summary, programming Dectalk is my favorite thing to do. Blake

More information about Blake and Snoopi:

Click here for http://pastorsnoopi.twigs76.com/”> for an article about this unique team.

If you would like to contact Blake Roberts go to: beroberts@hughes.net

If you would like to contact Snoopi Botten go to: http://www.dectalksings.com/ or email Snoopi at dectalk@aol.com.

The video below is about Snoopi. Imagine, he sang the National Anthem for a professional baseball game. Don’t you love his confidence and spirit? His goal is to get a Grammy–and I think he will.

Keep Climbing and Singing: Onward and Upward
All my best,

Mary

What do you hear? See? Think? Want to discuss?

What did you think of Blake and Snoopi’s version of “Do you hear what I hear?” Do you know anything about DECtalk? or other programs to help people with disabilities talk/sing/dance/make beautiful art? I was struck how their work makes me listen and see differently, how it helps me see “goodness and light.” What about you? Do you know anyone who might also be interested in collaborating with Snoopi or Blake? Does their can-do spirit remind you of Aimee Mullins?

For anyone who buys gifts for a person with autism or a disability, here is a fun twist on the classic poem which shares some of the reasons it is so difficult to find the perfect gift.

Cindy Waeltermann, is the founder of AutismLink and gives us permission to reprint her poem on behalf of her two children who are adults with autism.

Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….

Thanks to Trish Doerrler, a parent of a child with autism, for sharing this poem on her blog In so many words.

Hope you all have a fantastic Holiday, with lots of precious moments.

Aaron’s Favorite Gifts

This year we are getting Aaron a tape/CD player because Aaron thinks listening to music is an active sport. He loves putting the tapes (yes, tapes) in and out. We can find tapes in used book stores. They are usually pretty cheap, but that is great because then when they only last a couple days, they can be replaced. The hardest part will be to get the staff to understand the batteries are rechargable and should not be thrown out.

Aaron also likes to lick and flip baseball cards. He especially likes the ones with cheerleaders:)

I wish we had a longer list. He really isn’t impressed with new shirts and underwear.

Keep Climbing: Onward and Upward.

Mary

Comments:

Which gifts work for your child? especially adults with autism or other disabilities? Are the gifts age-appropriate?

Here is one of our most popular posts. Relax and make an individualized ENJOYMENT plan for your best holiday ever.

Mary

Easy as I.E.P.

Mom’s I.E.P. for the Holidays: Individualized Enjoyment Plan

Want to enjoy the holidays?

Of Course.

Easy as I.E.P.

Don’t laugh. I.E.P.’s were developed because they are good planning tools. Some people are intimidated or challenged by the I.E.P. in Special Education. One way to demystify the I.E.P. process is to use it in our everyday lives. So, stick with me for a minute while we look at how this can work in real life.

Let’s use the Individualized Education Plan to create a holiday planning guide.

The first part is to create your Dream Plan of what you want. Then we plug in the basic parts of the I.E.P.: Evaluation, Annual Goals, Short term objectives, Related Services, Placement, and circle back to the Evaluation for the next I.E.P. for next year.

Dreaming of YOUR perfect holiday

Everyone’s perfect holiday looks different: Grandma’s turkey feast, or make that a roast goose, or Uncle Bob’s ham and sweet potatoes, or a vegetarian, or Kosher, or vegan, or gluten-free …

Everyone has different expectations, traditions, time and money constraints. So forget the Women’s magazines, forget what your Mother-in-law wants, forget what happens on the Food Channel and Martha Stewart show.

We don’t care about “Everybody.”

The beauty of the I.E.P. is it is individualized. It is for You. Not your mother, your children, your boss…YOU! This is YOUR moment, your freedom, just YOU–what do you want?

Action Step 1: Visualize a Dream Holiday

Take a deep breath and picture a smiling yourself surrounded by your favorite people, doing what you really want to do. Ahhhhh.

Are you skiing down a mountain? Are you sitting by the fireplace listening to Bing Crosby? or Lady Antebellum? ….

What would make this a joyous holiday for you–with just the right balance of work and relaxation?

What were the strengths and weaknesses of previous holidays?

Do you want to start any new “You” traditions, new family traditions?

Define your dream plan (see related post)

Feel empowered to do it YOUR WAY. This is your holiday gift to yourself. You deserve it!

Don’t you feel better already? This holiday is going to be the best.

Dream Plan:

1. Take a sheet of paper and fold it into four squares: Wants, Needs, Likes, and Dislikes.

2. Fill in the boxes based on YOUR Individualized choices.

If you are feeling pressure because others are trying to get you to do something you don’t want to do, be polite but tell them to make their own IEP. Empower yourself! I know this is hard for me and most Moms.

3. Circle your five top priorities and they will become your goals.

For example: Want live tree. Need family to be together for dinner. Loved shopping with Aunt Ruth. Hated the last minute rush….

One Priority goal: Need family to be together for dinner.

Making a decision is the first step. What do YOU want? What would bring YOU joy?

EVALUATION:

Since there is no standardized tool to measure the
holidays–no HFA (Holiday Fun Assessment) or HQ (Happiness Quotient)–we will create an informal evaluation tool based on ecological assessments.

GOALS:

–

LONG TERM GOAL I: To have a traditional, homemade turkey dinner with family members on Christmas Day.

Do we want to raise the turkey and grow the corn for the stuffing? Serve the strawberry preserves from your summer garden? Do we want to skip the preparation and order in? Or go out to eat? So many choices?

If we decide to keep this as one of our goals, then we must break down our long-term goal into measurable, observable steps.

Mom decides she wants to cook the Christmas dinner and eat at home.

SHORT TERM OBJECTIVES:

“Short term objectives are merely small steps that enable us to get from where we are now to where we want to be by a certain date.”

A. Mom will finalize the menu by December 10.

B. Mom will make the list and complete the shopping by December 15.

C. Mom will prepare the dinner by December 25.

Each of these short-term objectives can be “task analyzed” and broken down into smaller parts.

We know these are important steps to reaching our goal so they must be completed with 100% accuracy. (75% completion of the meal may leave some family members hungry.)

Goal Two:

LONG TERM GOAL II: To have the gifts wrapped and under the tree by December 24.

SHORT TERM OBJECTIVES:

A. Mom will purchase all supplies by December 10.
B. Mom will supervise the gift-wrapping by December 15.

Task Analysis example:

Mom will supervise:

1. Billy will cut the paper.

2. Dad will wrap and tape the gifts.

3. Susie will add the bow.

4. Tommy will place the presents under the tree.

Notice in the Task Analysis, family members with different skill levels can all partially participate.

RELATED SERVICES:

—“Developmental, corrective and other supportive services to enable you to reach your goals.”

To achieve Goal IC –“Mom will prepare the food by December 25”—Mom will need the following supportive services:

Consultant: Grandma has the expertise to bake and bring perfect pumpkin pies.

Consultant: Aunt Jane will come early to help in the kitchen.

Community Resource: We will purchase the local bakery’s famous dinner rolls.

PLACEMENT:

Now that we have written our IEP we must determine the least restrictive environment for accomplishing our goals.

We could cook and wrap the presents at Aunt Sara’s and bring
everything home, but to meet Mom’s goals on this particular IEP, her own home is the least restrictive environment.

Remember any IEP can be revised or modified at any time. For instance, if Paula Deen wants to invite my family for a holiday dinner, I would change these goals in one butterfat minute.

Happy Holidays

I hope using the I.E.P. process not only makes it easier to understand, but I hope it can be a tool for you to have a magical holiday season.

Well, what do you think?

1. Do you better understand the IEP process?
2. Would this process be useful for everyone?
3. Does anyone raise turkeys?

Keep Climbing: Onward and Upward
All my best,

Mary

Other posts you might enjoy:

Celebrating St. Nick and two special sons.

Balancing My child’s needs and my needs

Celebrating St. Nick and Two Special Sons

"The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there."

Family Traditions:

Because of our German heritage, St. Nicholas’ Feast day on Dec. 6th was the start of the Christmas season. The tradition of putting out our socks (or shoes) was always great fun.

Aaron, our son with the label of autism, and Tommy, our son with the label of normal are now 36 and 35 years old. Last post I wrote about how our holiday celebrations are evolving: St. Nick meets Disney Princesses.

Old Traditions

The first year we were married, my mother-in-law Jean, hand-made Christmas stockings for our mantle. Of course, we were living in a small apartment with no fireplace or mantle, but it began a family tradition. You know this was a long time ago because while Tom’s sock was a typical crew man-sock, mine was shaped like silk hose plus garter. (Do they even make those anymore?)

To personalize the stockings, Jean lovingly sewed small schoolhouses on both of our stockings because we were teachers, adding a felt wedding ring on mine and a felt set of golf clubs on Tom’s. When I was pregnant, she made an “Our Grandbaby” sock for Aaron who was going to be born in December. Later I store-bought some Christmas stockings for both my sons but glued and sewed some Christmasy trim on the socks.

Now a generation later, I captured our family’s own Norman Rockwell moment—Isabella pointing to the “Our Grandbaby” stocking on our mantle.

Making New Family Traditions

Lots of families put up Christmas stockings, some find stockings that are personalized with each person’s name, or hobbies, or interests like socks for dog lovers, Barbie dolls, sports fans, or ….

But, our family made the old tradition our own by adding a token of some special moment each year on St. Nick’s Feastday.

Adding a Memory a Year

Throughout each year, Tom and I look for small tokens and give them to each other on St. Nick’s Day.

Vacations and trips were easy. There were always ready-made patches, pins, buttons we could pick up at souvenir shops. Scouts, school events, sporting ribbons and awards also were small and could be easily attached to the socks. We even added some mementos inside the socks, like Tommy’s business cards for each new job and Aaron’s first pay check. Now the front, back and inside of the socks carry magic moments to remember.

Our socks have become treasured scrapbooks of our lives.

Tommy's Christmas Sock 35 Years

Aaron's Christmas Sock 36 Years

What do you think? Does this tradition meet the test of inclusion+ normalization? Are Aaron and Tommy’s socks alike? Age-appropriate? Do these socks also celebrate their individual gifts and interests?

You can see Aaron’s Trolley Bus pin from our trips to the Smokies, the pin from Carlsbad Bat Cave, his school bus and Lakota Pin, his prom key chain, his Boy Scout patch from Woodland Trails, a horse pin from Cincinnati Riding for the Handicapped, National Park patches where he hiked with our family…

Tommy has Boy Scout pins, school patches from the cross-country team, buttons of him looking fierce in his junior high wrestling uniform. Tommy also hiked the same easy trails in the National Parks but those patches were not the same accomplishment they were for Aaron. Tommy was proud of his week in Philmont and the more difficult mountain hikes on the Appalachian Trail with his dad…

So both Aaron and Tommy had hiking patches. The difference was the intensity, duration and difficulty of the trails.

Both were proud accomplishments.

Transition

Tommy’s wife, Ana, bought Christmas stockings for their first Christmas together. Each year I give them some token to add to their sock. This year, Ana became a United States Citizen. After the ceremony the Daughters of the American Revolution passed out little flag pins. I asked for an extra one, planning to add it to her sock.

Aaron just moved into his new house, I have stockings ready for his first house decorating party, he will get a house key on his sock.

And so the tradition continues:

“The stockings were hung by the chimney with care, in hope that St. Nicholas soon would be there.” (Night before Christmas)

Wishing you many happy memories this holiday season.

Keep Climbing: Onward and Upward

Best,
Mary

Comments

I hope you’ll share some of your family’s holiday celebrations. Is this an idea your family can adapt? Does your family celebrate St. Nick’s or have some unique tradition?

Other stories you might enjoy:

Tale of Two Brothers: Sibs of People with Disabilities

Circles of Life: Family Reunions