ABC's of ACC by Matthew's Mom

Matthew's Mom, Sandie, has been leading the research efforts for as long as I can remember.  It was her blog that connected us to Dr. Eliott Sherr, who is still researching ACC at UC in San Francisco where Elisabeth was evaluated. 

I have created the link here to ABC's of ACC to help people understand how differently ACC impacts development for each child or adult. 


  ABC's of ACC

Something to cheer about!

Not your typical dog and pony show but a real commitment and effort from students creating inclusive and fun experiences for their fellow students is something to cheer about!

Something to cheer about!

Not your typical dog and pony show but a real effort and commitment from students creating inclusive and fun experiences for their fellow students is something to cheer about!

Collective Souls & Pillow Fights: Round Two

For anyone who ever wrote a string of words, conveying an event, an observation, or an idea that enabled another person to see goodness in our humanity, I say thank you. Your words must live forever because it is through your words I find hope and connection to humanity. It is through your words I see a future for my daughter where she can exercise her independence, freedom, and happiness. She will have struggles, like everyone, but unlike everyone, she will be one of the feathers in the air.

I've always struggled with writing. With words. I'm a spatial  learner. Not gifted. Just very spatially oriented. When somebody like Harriet McBryde Johnson comes along and starts telling it like it is, I feel justified. Sweet justice.

"Ahhhh... finally somebody gets it and can articulate clearly what it is we're all talking about."

What are we talking about?

We're talking about a fear.  We fear people who think they understand our children's needs but do not. The people who speak on our children's behalf. People who pretend to understand a language our children speak. A language that fewer people understand. People who claim to protect our children because a law requires them to do so. People who put so much credence into laws protecting our children that they no longer see the exception to the rule.

We fear that once we're out of the picture special liberties will be taken away once they grow into adulthood not with degrees from college but with a need to rely on people to do just about everything for them. We fear they will be left in the care of someone who is clueless about their real needs. We fear the laws that will be written in their behalf.   We fear they will be seen as a burden or an object of pity.

How will they know my daughter climbed Half Dome in Yosemite or packed through Many Glacier and saw a Grizzly? How will they know she camped on Assateague enduring a million hungry mosquitos just to hear the ocean roar at night under an evening sky crowded by twinkling stars. Will they care that she felt a stingray brush up against her ankle near the equator or sat in photos with the local celebrities? Will they know that making bubbles in a pool makes her laugh hysterically and sad music makes her cry?

How will they see her for who she really is if she cannot speak a language they understand?

We have no control over what happens to our children once they grow into adulthood once we're out of the picture. So when somebody like Harriet comes along, we want to hold on to her for dear life because she helps make the connection for all our children.She was a life line for all our children. She wrote with clarity and logic.

When I write on my daughter's behalf, my ideas, my observations, my events, are described through words that are like feathers exploding from an imagined pillow fight. The words, like feathers, are always floating through the air for me. When I reach out for one to create something, it eludes me. When I reach down for one, the wind carries it away.

For anyone who ever wrote a string of words, conveying an event, an observation, or an idea that enabled another person to see goodness in our humanity, I say thank you. Your words must live forever because it is through your words I find hope and connection to humanity. It is through your words I see a future for my daughter where she can exercise her independence, freedom, and happiness. She will have struggles, like everyone, but unlike everyone, she will be one of the feathers in the air.

Public Service Announcement: The R-Word

"Just Don't Say It!"

Sparkle Effect Cheerleaders

Dianna Watson

6 hours ago · 

"SPARKLE EFFECT" Cheer Program for Students with Disabilities

The Finneytown High School Cheerleaders proudly announce the start of a new inclusive cheer program that includes students with disabilities. Students with disabilities will have an opportunity to cheer for and with their peers at this years home football and basketball games. 

This innovative student-run program encourages students nationwide to include students with disabilities at junior high, high school, and college level to cheer-male or female. The Sparkle Effect squad will play a part in enhancing social, communication, and physical skills in these students, as well as having a positive effect on the school and community. We want to make game night an experience for everyone ! 

Join us on MONDAY NIGHT, MAY 13TH, 7PM IN THE MP AT FINNEYTOWN SECONDARY CAMPUS

We will have an information night, meet the coaches and some of this years cheerleaders, and even have the opportunity to register for this years "Sparkle Effect" cheer squad.

For additional information, please visit the website-www.TheSparkleEffect.org

You can also contact Dianna Watson, FHS Cheer Coach at DWatson@finneytown.org or 521-1525 if you have questions or need additional information.

WHO'S READY TO SPARKLE?

Puberty Happens...

Our children generally hit puberty head on regardless of their functioning "age" capacity.  We see the changes physically but we don't factor in that  the hormones are buzzing the same as any typical developing biological peer.

We noticed changes in Elisabeth's behavior toward the opposite sex around twelve  but we weren't thinking, "Oh, this is puberty" because she's generally happy-go-lucky.  She just happens to be around a lot of males -- her uncles, cousins, and friends at school.   In fact, there were so many other issues going on  "puberty" took a back seat until she turned 18.  When we started experiencing changes in her sleep habits, staying up later for example, then it all made sense.

In church, she would throw her chains behind her when she saw a cute college boy standing near her.  She tips her head to cuddle if you get close to her. She loves to be held with your arms around her. She also loves when you hold her hand which is something she would not tolerate.   It wasn't until I watched her "flirt" with one of the male volunteers at her school that I realized, "Uh oh, her emotional age is catching up with her biological age!"

And that's a good thing.  Here's an article about some of options parents and caregivers have about suppression of menstrual cycle which isn't an issue for Elisabeth right now.

Transition Bootcamp 2013

LAST CHANCE! REGISTER TODAY!

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Please Join us for Transition Bootcamp 2013

February 9th

1:00pm-4:00pm

Location: Ohio Valley Goodwill Auditorium

10600 Springfield Pike, Cincinnati, Ohio 45215

Topics to be Covered:

· An overview of employment and personal development options following high school

· Information on funding sources and eligibility determination

· Provider Fair featuring a variety of agencies

TO REGISTER GO TO:http://dsagc.donordrive.com/event/Bootcamp13/

This email was sent by DonorDrive® software on behalf of Down Syndrome Association of Greater Cincinnati. 644 Linn Street, Suite 1128 Cincinnati, Ohio, 45203-1734, United States Use the subscription center to unsubscribe or update your subscriptions. Follow this link to

Erma Bomback's Vanity Clause

(Note to readers: if you click on the title, you'll be directed to the article to which I am referring here.)

A while back, Elisabeth and I met a woman in a line at the bank. She was behind me crying very softly. I turned around and asked if I could help her. She unloaded the news of her newly born - mentally retarded granddaughter, her taking-it-hard daughter, and her falling apart family. The woman went on with "it's got to be so hard on you" and pointing to Elisabeth "the poor little dear." As she blew her nose in a tissue she said, "what kind of life is it with all problems she's going to have?"

I wasn't sure if she was speaking rhetorically but either way I couldn't answer. All I could offer her was empathy assuring her that Elisabeth was fine but caught myself like everyone does ending with a sympathetic "I'm sorry to hear about your granddaughter" instead of an opening "what is her name?"

She broke down even more. After I pointed at the empty chairs in the corner of the bank lobby offering to sit with her until she gained composure, I searched through Elisabeth's backpack on her wheelchair for candy or a bottle of water. Instead, I found a newspaper clipping that I had tucked away a few years before. A newspaper clipping I almost threw away.

It was a clipping from an article written by Erma Bombeck that finds its way into every hand of every family of a child with special needs whether they like it or not. I hesitated offering it to the new grandmother because I remember at first taking offense from what was written. But I needed to give her something tangible. I needed to make a connection to let her know things turn out okay.

After I assured her that Elisabeth is a very happy little girl, I asked if she ever read Erma Bombeck's articles. I showed her the clipping and explained how it was given to me shortly after Elisabeth's birth by a mother who had an adult son with CP. I handed the article to the crying grandmother who stopped crying long enough to look for her reading glasses but I stopped her and said, "no, wait until you get home."

Then I took Elisabeth out of her wheelchair and said "Elisabeth loves hugs from Grandmas and being that her Grandma lives far away, can she give you hug?" While this woman was holding Elisabeth's limp, curled 6 year old body, I shared with this woman what helped me understand the responsibility I had being Elisabeth's mother.

Before I became pregnant with Elisabeth, I told her about the photograph of a child  in an exhibit memorializing Anne Frank and all the children who perished with her. It was a medical photograph documenting a child ready to be "exterminated" due to her imperfection.

When I saw this picture, I explained, it was like I knew this child all my life. "I cried just like you were crying because I wanted to give her the life she deserved instead of being discarded like an unwanted gift."

"Everyone goes through stages of acceptance differently," I explained, "I went through mine early and you're moving through your own right now. It's natural to get stuck using a lot of our own personal energy and emotional resources blaming ourselves or blaming others and looking for cures and making bargains with God. Just remember what your new granddaughter needs most is a grandmother all children deserve to have."

After giving Elisabeth a hug, the new grandmother asked what she could do for her daughter, "She's still taking it really bad."

"For each new mother," I explained, "the experience and acceptance is different. The best thing you can do is to be the mother she deserves to have. The Mother you were chosen to be. According to Erma Bombeck, I was chosen to be Elisabeth's Mom because I was self absorbed and vain and I wouldn't have time to wallow in self pity or pity for my child. Hopefully you can get your daughter off the hook here, for Erma's sake." And I laughed so hard it echoed through the bank lobby.

The woman looked at me very curious and started laughing, too. "I loved reading Erma Bombeck in the newspaper" she commented and then I suggested getting back in line because the bank would be closing soon.

While we stood in line, I told her about Elisabeth's Grandmother's church club that raised a thousand dollars so she could have her own adapted bicycle because "no child should be without a bicycle." I felt a new confidence growing in the new grandmother as she saw Elisabeth through a new set of eyes trying to get her to giggle again.

The same confidence that was passed onto me as tangible as the newspaper clipping I almost threw away.