Speaking the same language, part two

by Patricia Wright

In my last post I promised to give blog readers more details on the Second International Congress on Persons with Disabilities I was fortunate enough to attend in Guadalajara last week, so here goes!

My colleague Beverlyn Mendez, the Chief Operating Officer at Easter Seals Southern California, joined me to give a presentation on augmentative and alternative communication (AAC). We were also able to share time with our colleagues from the Confederación Mexicana de Organizaciones en Favor de la Persona con Discapacidad Intelectua (CONFE) to discuss how we can most effectively provide services and supports to individuals with disabilities.

And the good news is that Beverlyn actually speaks REAL Spanish as opposed to the “fake” Spanish I try to get away with. This, of course, is just one quality among many that Beverlyn possesses — she also has an amazing understanding of how to work collaboratively to meet the needs of people with disabilities. She was such a valuable asset to the trip to Mexico, as she really appreciates working collaboratively to promote the best outcome.

With international work, we have the opportunity to learn so much. One of my learning opportunities from this trip was that the natural supports that exist in Mexico within extended family are amazing! Two of the more memorable people I met In Guadalajara were our two hosts from CONFE: Javier Quijano Orvananos and Maria Quijano Orvananos. Yep, they are brother and sister. Their family has a long history of supporting people with disabilities, as they have a brother who was born with Down Syndrome.

Easter Seals was able to share some of the communication strategies we are currently using in the United States with individuals who don’t develop spoken language. There are lots of different ways to communicate. Some people with autism point to pictures or symbols to tell people with they want. Others use sophisticated computer devices with touch screens that have pictures, symbols and words on them. The person with autism touches the screen on the computer, and the computer generates a voice — the computer talks! Pretty funny that I was in a country where I don’t speak the language and I was talking about communication, don’t you think? Good thing the topic was autism so that I at least had some content knowledge!

All in all, an absolutely wonderful and rewarding trip. Having opportunities to learn together like this makes all the difference in the world.

When it comes to autism, we speak the same language

by Patricia Wright

I love speaking in another language, even when I’m not proficient. Some people might view this as a deficit, but I have no shame — I just go for it! I’m sure I sound like a two year old but hey! Better than not trying at all, right?

I was able to try my Spanish last week at the Second International Congress on Persons with Disabilities, held in Guadalajara, Mexico. The Congress was aimed at professionals, parents, therapists, doctors, volunteers and anyone who is keen to learn more about the latest developments in the treatment and care of people with disabilities. Easter Seals was delighted to be in attendance.

Easter Seals has recently established a relationship with Confederación Mexicana de Organizaciones en Favor de la Persona con Discapacidad Intelectua (CONFE). CONFE is a national network of 160 associations in Mexico that share a mission: to be a factor for people with intellectual disabilities and their families, and see that they have a life of greater quality and social integration.

Easter Seals is delighted to be working with CONFE. Through our sharing of ideas, strengths and needs we can learn together to ensure people with disabilities in the United States and in Mexico have the best opportunity for a high quality life.

I’ll share more about my trip in a blog post next week, but right now, I’ve gotta go. Hasta luego!

Sweet Tomatoes wants to send you home with cookies

by Beth Finke

Hooray! It’s finally June! To celebrate the return of summer, Sweet Tomatoes Restaurants in Colorado, Illinois, Missouri, Oregon, Utah and Washington are offering a free bag of cookies and a coupon for a return visit as a thank you gift to restaurant guests who make a donation of $2 to Easter Seals.

Donations collected from the campaign support Easter Seals programs for people with autism and other disabilities in these six states. This means that each and every time you and your family visit a Sweet Tomatoes in June, you can help support essential local Easter Seals programs.

Sweet Tomatoes has supported Easter Seals for four years with nearly $50,000 in contributions. The generosity of Sweet Tomatoes patrons benefits people with autism and other disabilities who receive Easter Seals services, and those happy customers get to walk out the door with a coupon and a bag of cookies, too.

Now that’s a great way to celebrate the return of summer. Happy June!

Another celebration for Maurice

by Maurice Snell

Recently my family and I had the opportunity to attend the annual Easter Seals Celebration of Giving in San Diego. Every year Easter Seals honors its corporate partners at this event, and this year I had the awesome opportunity to reunite with many of my Easter Seals colleagues and meet some of the past representatives who served Easter Seals with great honor and dignity.

I already know former Child Representatives Marti Clark and Matt Gaughan, but this year I was delighted to meet a couple of representatives from a long time ago: Joy Hall and Dan Giuliano.

Listening to all of their stories was inspiring. I know that Easter Seals is the perfect organization for me and my family. My life wouldn’t have been complete without Easter Seals and the corporate partners who help Easter Seals. Overall it was a great Celebration of Giving event. I thank all of the companies for their contribution to the Easter Seals organization. We look forward to continue a great relationship with all of the corporate partners in the bright future!

Easter Seals segments air on Better TV!

by Patricia Wright

Easter Seals has been working with Parents Magazine to raise awareness about autism in its April and May issues. From these recent efforts, a new partnership emerged with Better TV, a lifestyle television show focused on topics that affect family and relationships.

Recently, Better TV promoted Easter Seals and Act for Autism by airing two segments focused on the importance of early intervention and autism services and Easter Seals’ signature event, Walk With Me.

Check them out:

“Easter Seals Walk with Us” encouraged viewers to join Better TV in raising autism awareness while catching up with an energetic and enthusiastic Scottie Gaither, Easter Seals 2008 child representative, as he led viewers around the Walk With Me event in Dallas.

“Helping Families with Autism” gave a shout out to Easter Seals corporate partner CVS Caremark thanking them — and CVS employees and families who showed their support for Easter Seals by attending the event. The segment described Easter Seals autism services at Easter Seals North Texas’ autism center and showed viewers that they could help families living with autism by lacing up their walking shoes.

A sense of entitlement might help

by Beth Finke

I happened to turn on Bob Edwards Weekend on NPR just as he was interviewing journalist Judith Warner about her book We’ve Got Issues: Children and Parents in the Age of Medication. In the interview, Warner was asked about a Newsday article that looked at why affluent school districts “classify more than five times as many of their students with autism as districts at the opposite end of the economic
spectrum.”

The Newsday survey drew on state data from school districts whose enrollments were more than 500.

Advocates who have compiled similar data voice concern that many poor, minority youngsters might not be getting the same extensive, state-mandated services available to those identified as autistic …

Medical experts blame the problem not so much on schools as on a lack of quality health care in low-income neighborhoods. Research shows toddlers in poor families who aren’t taken on regular visits to pediatricians are less likely to have their autism diagnosed when it first appears — usually, before age 3.

In the Bob Edwards Weekend interview, Warner said one reason students in affluent school districts are more likely to be diagnosed with autism is that their parents have a sense of entitlement. On first listen, this sounded a bit harsh to me. I guess I’ve always thought the phrase “sense of entitlement” had a pejorative connotation, that a person with a sense of entitlement was acting greedy.

I kept listening, though, and if I heard right, Warner meant that this particular sense of entitlement is a good thing. She wishes all parents, not just those who live in affluent school districts, felt this sense of entitlement when it comes to the health care of their children.

Do me a favor and listen to the podcast of Judith Warner’s interview if you get a chance. See if I heard it right.

A writer’s take on a new autism diagnosis

by Beth Finke

In my other life, I’m a writing teacher. I teach a weekly memoir-writing class for senior citizens in Chicago, and I give seminars on memoir writing and writing books for children at libraries and conferences.

One way I keep abreast of what’s going on in the writing and publishing world is to read blogs written by other authors. Last week, a post written by Jim C. Hines caught my attention. Jim’s first published novel, Goblin Quest, is a fantasy favorite among young adults. He has had five other books published, including The Stepsister Scheme and Red Hood’s Revenge. His blog posts are often about his own life, the craft of writing and his fantasy characters. Lately, though, he’s been writing about autism.

From his post last Friday:

A while back, I was pondering how much to publicly share about family, particularly my children. There was a reason for this.

Today we received confirmation from my son’s school that he meets their criteria for ASD — Autism Spectrum Disorder.

Hines goes on to say that the diagnosis was not completely unexpected. His wife is a practicing counselor, and he has a degree in psychology. Both of them had noticed their son Jackson had certain behavioral issues.

He is who he is. A note from the school doesn’t change that. What it does is gives us a way to make sure he gets the help he needs.

A diagnosis of autism is never easy to take, and I was very moved by this author’s reaction. It gave me hope that our messages about autism awareness and the services available to help must be getting out there.

Hines ends his post with an admission that he is still processing the diagnosis, and is not looking for advice quite yet.

He’s a good kid. I know he’s going to be okay. I know the rest of us will, too. But it’s hard right now.

And though he’s a successful writer, Jim C. Hines found it difficult to find the words to end his post. So instead, he did what any proud father would do. He ended the post by showing off a photo of the son he loves.

Support our friends at the Autism Society in the Pepsi Refresh Project

by Beth Finke

Our friends at the Autism Society are competing in this month’s Pepsi Refresh Project and their idea has our vote.

Pepsi is giving away $1,300,000 each month to fund great ideas, and the Autism Society is in the running to use $250,000 of the prize to set up a 24/7 support line for families and people with autism.

The Autism Society’s proposed Expand Autism Source project seeks to expand their ability to help the growing number of people affected by autism in the following ways:

• Provide accessible information and referral services, 24 hours a day, 7 days a week, via a single point of entry that offers confidential one-to-one contact with a live specialist.
• Provide needs assessment and linkage to individually appropriate services and support, and immediate or short-term response to crisis situations.
• Implement follow-up, quality assurance, and success measurement protocols.
• Develop and maintain a comprehensive, accurate, and dynamically updated database of available community resources accessible via the web.
• Provide training and continuing education for information and referral specialists.

The Pepsi Refresh Project accepts 1,000 ideas a month from people, businesses, and non-profits that will have a positive impact, then leaves it up to voters to decide who wins the funding. It’s easy to vote, and voting ends at the end of May. Join us in supporting a great idea from a terrific organization.

More selfless than other moms? Really?

by Beth Finke

Over the weekend a friend sent me a link to a post called Top 20 Reasons Moms of Kids With Special Needs ROCK. The post was published on a blog called momlogic. While I appreciate the sentiment, I gotta admit: I don’t really go for stuff that sets moms of kids with disabilities apart (better?) than other moms.

Let’s face it. Just about every mom loves their kid no matter what. So statements like this on this list actually turn me off :

• 10) Because we work overtime every single day.

C’mon. What mother doesn’t work overtime every single day? And then there’s this :

• 12) Because we are more selfless than other moms. Our kids need us more.

Really? Are we more selfless than “other” moms? I don’t think so.

Don’t get me wrong. I do understand it is different to be a mom to a kid with special needs. I just don’t agree that we are better moms. We are moms. And like so many other moms, we love our kids. We want the best for them. No matter what.

I do admit there was one item on the list that made me smile, and made me think of the love I have for our own son, Gus.

• 15) Because we understand our kids better than anyone else — even if they can’t talk; even if they can’t gesture; even if they can’t look us in the eye. We know. We just know.

It’s true! I can tell by the way Gus smacks his lips that he’s thirsty, I can tell if he’s afraid of something by the way he holds my hand. And I can definitely tell he’s happy by the way he laughs.

We had a wonderful time with Gus on Mother’s Weekend. Hope all of you — whether your kids have average or special needs — had a wonderful weekend, too.

Celebrating Mother’s Day with autism

by Beth Finke

My husband and I are taking off this weekend to visit our son Gus in his group home in Wisconsin. Gus won’t understand that it’s Mother’s Day, but as always, it will be great just to be with him.

Children with autism can find it challenging to express their feelings on Mother’s Day without guidance from a parent, teacher or caregiver. That doesn’t mean a family shouldn’t celebrate, though! Children with disabilities can mark the day in small ways that can speak volumes. Sometimes Gus signs a simple card. One year we took a scribble Gus had drawn and transformed it into a pin. This year, Mike and I are treating ourselves to a night in our favorite Milwaukee hotel after our visit with Gus. For us, Mother’s Day won’t be just one day. It’ll be an entire weekend.

If you are looking for ways to celebrate Mother’s Day, a company called Rethink Autism might have an idea for you. From a press release:

In appreciation of mothers of children with autism, Rethink Autism has drawn from its library of video lessons to provide a free online video with a few tips on how to teach a child with autism to appreciate Mom by making a gift or even a meal (using a microwave).

I checked out the video myself — it’s straightforward and easy to understand. The video lessons Rethink Autism produces are consistent with Applied Behavior Analysis
(ABA), a methodology we are a big fan of here at Easter Seals. So enjoy the video — I’m off to pack. Happy Mother’s Weekend!