Today is Jan. 1
Could this be the year of the Power of One?
We can celebrate with fireworks, silly hats, black-eyed peas and sauerkraut. We can dress in yellow (for prosperity) or white (for peace) while throwing pomegranate seeds on the roof and making wishes. But, this new year will race forward–with or without us. In 365 days, it will become the next year, and then the next …. The cosmic universe doesn’t care about individual civilizations who make their own calendars. It doesn’t care about individual people.
Actually, that is a comfort. I don’t want to be Atlas holding the world on my shoulders. I don’t want the responsibility of saving the world, that’s too much.
Systems Theory–Circles of Life
Bronfenbrenner’s systems theory states that what affects one part of the system affects all the parts of the systems. In previous posts on the circle of life and family reunions I’ve talked about his embedded systems (like Russian Dolls). The individual is in the center circle, surrounded by the family, surrounded by the community and “systems.”
Inner Circle: Aaron
When Aaron, my son with the labels of autism and developmental disabilities was growing up, I made specific dream plans and goals to include him in an inclusive community.
They were audacious plans. But we had IDEA and ADA and hope. And Aaron was young and had lots of years ahead of him. I thought the values of ALL people living and working in an inclusive community would keep evolving into a more accepting world. I thought I could count on the professionals, the local, state, national agencies and organizations to help.
But those systems don’t exist for adults with disabilities and/or their families.
Aaron is 42 years old. For adults there is no mandate or law saying he can get services. So we have watched as his behavior and communication have deteriorated. And, frankly, I have even had trouble envisioning a new dream plan.
This past year has been a painful experience watching the residential and vocational companies NOT want Aaron–but want his Medicaid Waiver funds.
The opportunity of a new year is to dream again. It’s time to use the Power of One.
The Power of One: For Aaron
Aaron recently started a day program with Goodwill/Easter Seals five days a week and they are providing him with a one-on-one staff person three days a week. That is the brightest hope we have had for years. So YEA!
Aaron still has a great roommate and one loving caregiver who has been with them for over 7 years. YEA YEA!
And Tommy (Aaron’s brother) and his family are now living near us, so our family can get together more often. YEA YEA YEA!
That is three wins. As this year ends, those are the blessings I see and celebrate.
Dream plan for Aaron:
Aaron will be happy. He will have people around him who love him. He will have choices and do interesting things. Have friends. He will be able to communicate when he wants/doesn’t want something. He will be safe.
Pretty basic. Nothing specific. But again, these are audacious goals.
So, maybe everything you and I do this year will not make much of a difference in the cosmic scheme of things. But using the Power of One, I can do something to make a difference in my son’s life.
In the example of Goodwill/ES, it was the Power of One times 4. Aaron’s Dad, me, our Support Coordinator, and the leadership of Goodwill/ES. We kept at it, and it happened.
The Power of One: For Community
Using the Power of One, I will continue my blog,ClimbingEveryMountain.com.
I will try to entertain, encourage and give information to grow a community that cares about adults with disabilities.
Thank you for being with me on this journey. It has been an amazing first six months for Climbing Every Mountain. Together we can build a better world and community–one person at a time.
Old Bronfenbrenner wouldn’t recognize his embedded systems, but today we are using the social media tools (blog, Twitter, Facebook) and reinventing his circles of love and support that will ripple out to touch the future. The people in the circles are not our next door neighbors, they might live on the other side of the world.
Is social media and technology the solution?
Chris Brogan (ChrisBrogan.com) is a social media guru who suggests the future is going to include websites, blogs, forums, videos and online communities which help us connect with like-minded folks to get the information and emotional support we need.
His new company, 501 Mission Place, is helping non-profits use social media and become more effective. Perhaps you know of a non-profit that could use some social media help.
But I wonder if it is too late for many traditional organizations.
Virtual communities are already replacing many of the antiquated national organizations which have huge overhead and an inability to help individuals.
Virtual training is replacing the large conferences, meetings and university classes. Webinars and online courses like Partners in Policymaking are the new “best practice.”
Do you use the traditional phone and agencies in your community, or do you search for people and information in the virtual world of Cable TV, iPods, www, Twitter, Facebook, YouTube and …?
Summary: In this new year, we can use our individual power, the Power of One, to make a difference for our children with disabilities. We can do it by advocating directly for the people we love, and we can do it by becoming part of a virtual community like Climbing Every Mountain or other online communities.
In 2017–We’re Number One!
I hope you will sign up (top left) to get notices of new posts. I hope you will add your voice and stories to the comments. I hope you will use the social media of Twitter and Facebook to invite others to join us. The way we are going to build a better world for vulnerable people is to join together. And I hope you have an amazing 2017.
Keep Climbing: Onward and Upward
All my best for a fantastic year of ones,
Use Your Power: Comments Please
How can you use the Power of One? Do you think social media can help? Do you recommend other blogs and/or virtual communities?
I’d love to read your comments and know what you are planning this year.
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
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
But what they don’t know
And what they don’t see
Is the joy that we feel
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
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.
All my best,
Which gifts work for your child? especially adults with autism or other disabilities? Are the gifts age-appropriate?
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 2014.
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.
Do You Hear What I Hear? |Music and Visual Art
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:
If you would like to contact Blake Roberts go to: email@example.com
If you would like to contact Snoopi Botten go to: http://www.dectalksings.com/ or email Snoopi at firstname.lastname@example.org.
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,
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?
“Toyland, toyland, magical girl and boy land. Once you cross its borders, you can never return again.” (Babes in Toyland)
There’s No Santa
Aaron and Tommy got off the school bus and our world changed.
Tommy walked in the front door, threw his backpack in the corner and announced “There’s no Santa Claus.” Apparently, Billy and Josh minced no words on the bus ride home. And, they were third graders who knew these things.
Aaron, my son with the label of autism, went straight to the refridge.
But what is a mother to do?
I got Aaron settled with a snack and his music and then sat next to Tommy on the couch. We both were facing the Christmas tree and feeling pretty glum when he crawled into my lap. That action alone choked me with tears. Tommy was seven years old and seldom let me hold him on my lap any more–yet another reminder my baby was growing up.
His happy world was just turned upside-down.
Like all parents, I knew this moment would come. And, I wanted to send coal to Billy and Josh for ruining the fun.
I knew this was one of those rite-of-passages, a transformational moment in his young life–but darn. It seemed just yesterday he was three and running down the steps on Christmas morning, diving into the presents from Santa–darn, darn.
For a long time, we watched the reflection of the lights on the tree ornaments and didn’t say anything.
It was a treasured moment but I was desperately trying to think of how to keep the magic. How could I patch up the hole of a Santa that no longer was real?
Sure we’ve had some close calls, i.e. St. Nick and the Batman socks. But this time, there was no going back.
Tommy finally started talking and asked some questions. He said he had suspicions because the whole Santa-goes-around-the-world-in-one-night is a little hard to believe. But, but, but.
There were the things he said: “So there’s no Easter Bunny, or Tooth Fairy…?” “Was God real?”
And the things he didn’t say: “Did all adults lie, trick kids and play games with them?” “Who could he now trust?”
I tried to put myself into his world and think of ways he might understand. My explanation that Santa was a make-believe superhero bombed. Later, I could talk about Jesus and the gifts of the Magi, but that seemed abstract for the current moment.
I’m not sure what inspired me, but as Tommy sat in my arms with his chin on his chest, I suggested Santa was a tradition about giving.
“The Santa tradition” was a fun way for everyone to be an actor in a giant real life magic play. It didn’t matter your age, it was about finding someone who needed cheering up, or needed help and giving it to them.
I told him little kids didn’t understand this, but big kids like him, now got to be part of the fun by becoming a Secret Santa to others. This seemed to make sense to Tommy.
Okay, who could we surprise? Who needed some Christmas cheer?
Tommy’s grandparents had just separated after a long and unhappy marriage. Grandpa had moved into a basement apartment in a not-so-great neighborhood and told the family, “This year I’m keeping it simple and not putting up a Christmas tree.”
So that minute, Tommy started to plan a Christmas makeover for Grandpa’s apartment. Tommy decided to become a Secret Santa.
For the next few days, Tommy spent every minute making decorations, planning how to sneak into Grandpa’s apartment, going shopping for supplies and a small tree….
He decided we needed cookies and put me and Aaron to work.
Aaron was nine years old. If Tommy (two years younger) no longer believed in Santa, then it was no longer age-appropriate for Aaron to believe in Santa either. Tommy was always my measure of “normalization” for Aaron.
I know some parents who, when they are told their child has severe intellectual disabilities or Down syndrome or…console themselves, “Well, at least they will always believe in Santa Claus.”
I know parents, special needs charity groups, care providers and teachers who take adults with disabilities to sit on Santa’s lap at the mall. In groups. UGH!
I know some adults with disabilities who have flat-out refused to go saying it embarrassed them. I know others who do it just to please others. I know some adults with disabilities who just haven’t had the guidance to know better.
The RULE for age-appropriate and normalization is: “Would a person without a disability do this?” “Will this activity add or subtract to a person’s positive image in the community?”
In this case, an adult with a disability sitting on Santa’s lap in the mall makes them seem like an “eternal child” not an adult who will live and work as a contributing member to the community.
This is a difficult concept for a lot of people. But this was the right move for Aaron and our family.
On Christmas Eve Tommy, Aaron, Tom and I got the key to Grandpa’s apartment and put on our red Santa hats. In under an hour, we decorated the tree, put holiday towels in the bathroom and kitchen, added colorful plants and pillows to his living room and his favorite snacks in the fridge. Tommy posted his drawings all over the apartment with a note next to a plate of sugar cookies:
I heard you were a good boy this year.
Babes in Toyland
Tommy glowed as he locked Grandpa’s door. As we got into the sleigh (er, car) we giggled, reviewed our Christmas caper, sang carols and drove out of sight.
When we stopped for burgers and fries (even Secret Santas have to eat) Tommy decided to continue wearing his Santa hat. Aaron–not so much. But my babes had transformed.
There was still Santa and giving and Christmas. But they were no longer the “Babes in Toyland.”
From now on, Mom’s IEP for the holidays would have to include our new roles as Secret Santas.
Over the next years, more innocence would be lost. There would be new lessons and transformations–but that is all part of growing and learning. It is all part of the magic of being a child. Being a parent. And, all part of the Santa Tradition.
Keep Climbing: Onward and Upward
All my best wishes. Ho-HO-HO. Have some fun this holiday and we’ll see you next year.
Share your Santa story:
How did you find out about Santa Claus? What are some of the ways you continue the tradition of giving? Any Secret Santa stories? Any thoughts on normalization and age-appropriate?