Respite … good for all concerned!

by Bob Glowacki

Autism Awareness Month has kept us busy in Wisconsin! BizTimes Nonprofit Weekly covered Easter Seals Southeast Wisconsin in an article called “Easter Seals Hosts Series of Events for Autism Awareness Month.” The story listed some of the many things we’ve been doing the past month to make people more aware of autism and how it affects our community, including:

• An Act for Autism Night with the Milwaukee Admirals
• A fundraiser at Rock Bottom Brewery (during all of April, 25 cents of each purchase of Lily Lager has been donated to Easter Seals Autism Services)
• In-store dollar donations for a handmade autism puzzle piece pin at local National Bakery and CVS Pharmacy locations.

The article featured a sweet photo of me with Easter Seals National Child Representative Kyle Mayer and his mom, Stephanie Gordon. I was quoted in the article, too:

Without services provided by Easter Seals, a parent may need to quit a job losing all the training and experience a business has invested in that employee … Easter Seals’ delivery of autism and respite service are not just “nice” for our community to have, but our vital in providing support so parents can continue to work.

I meant every word. Respite programs are so very important, and we are very proud of the respite we provide here at Easter Seals Southeast Wisconsin.

TV interviews are always better with an expert on hand

by Patricia Wright

Every year, Autism Awareness Month provides lots of opportunities to educate the general public about autism. As a professional I think my public education efforts are always more successful when I can talk about autism along with a real expert: someone with autism.

Thankfully this is just what happened last week in Boston. Joey Barry and his mom Jill shared their story on FOX 25 Morning News and did a great job raising awareness about autism. Watch the interview and you’ll see that Joey is a delightful child who is full of stories. What you won’t get to see was how much fun Joey had before the cameras even started rolling …

As with most interviews, the “talent” (that’s what the professionals/interviewers call those of us who show up to talk about a particular topic) is asked to be at the studio early. I met Joey and Jill in the lobby. I asked Joey what he thought about being there that morning and the first thing he said was, “I’ve never been on TV before!” His statement was accompanied by the biggest grin you could imagine. We had about an hour before our time on screen and Joey just continued to be full of life, sharing stories about his book writing, commenting on the TV cameras that appeared to move on their own and taking lots of photos of his own with a camera phone.

Fun was definitely had by all!

Reading aloud helps Make The First Five Count

by Beth Finke

Two years ago I traveled to Topeka with my Seeing Eye dog to visit Easter Seals Capper Foundation in Topeka, Kansas. A story in the Capital Journal did a beautiful job describing our visit.

Jim Leiker, president and chief executive officer of Easter Seals Capper Foundation, explained the purpose of Finke’s visit to Kidlink, which is an inclusive preschool and child care program for children with or without disabilities.

“She has a disability and has lots of challenges,” Leiker said, “and she has lots of goals and dreams, and she’s been able to achieve those. I think that’s a really positive message for the kids.”

My favorite part of that visit was reading aloud to the kids at Kidlink. Plenty of the kids in the preschool had autism, but truth is, without being able to see them, I couldn’t tell. Some were scared of my Seeing Eye dog, some couldn’t stop hugging the dog. Some seemed shy, others wanted to jump on my lap. Which were symptoms of autism, and which were symptoms of … well … childhood? Who knew? All we did know is that something different was happening in the room that day, and that we were all having fun.

Now Kansas First Lady Mary Brownback has joined in on the fun too! This month the First Lady read two books to the children at the Capper Foundation to help promote reading by adults to children. Coverage of the First Lady’s visit by 49 News (the local ABC station in Topeka) and The Capital Journal mentioned Easter Seals’ Make the First Five Count campaign. President and Chief Executive Officer of Easter Seals Capper Foundation Jim Leiker was quoted in the stories about how important it is for kids to get off to the right start so that they’re ready for school. First Lady Mary Brownback added:

Most people have the gut feeling as a parent, this doesn’t seem to be quite right or quite where they should be and then they need to get some help and figure out what the problem is and address it.

This visit from Kansas First Lady is a great way to bring awareness to the people Easter Seals Foundation serves — children and families living with autism and other disabilities.

The five things every parent should know

by Beth Finke

A big shout out to writer and autism advocate Laura Shumaker — thank you, Laura, for featuring Matt Riley as a guest blogger on your City Brights blog. Matt is the Chairman of the Board for Easter Seals Bay Area and the parent of a 16-year-old son with autism. In the post he credits Easter Seals for helping teach him a lot about being a parent to a child with autism, then gives a list of five things he thinks every parent should know:

1. Early identification and treatment are key to your child’s future.
Our son Grant was diagnosed when he was two. In hindsight, he developed normally until around 18 months. As young parents, Cristyn and I couldn’t put our fingers on it, but we knew something wasn’t right. Our fears were realized when we heard the diagnosis of “Autism” (more specifically, PDD NOS-pervasive development disorder, not otherwise specified). We didn’t realize it at the time, but getting that early diagnosis was very important to Grant’s development.

2. Trust your instincts– you know your child best.
If something doesn’t feel quite right, recognizing that there may be a problem is a first step to ensure your child gets the services he or she needs at the time they can benefit the most.

3. Understanding the basics about child development increases your awareness about the skills your child should achieve.
It is important to know and objectively track your child’s developmental milestones. I know as young parents we felt Grant was a bit “off” in certain areas, but we were not educated enough to recognize key development milestones like language, eye contact, name recognition and appropriate play. We are lucky today to receive such high-quality support right in our community from Easter Seals.

4. Each child is unique in their development and needs — take nothing for granted.
Grant’s diagnosis has redefined us as a family, as parents and as individuals. Despite the many challenges that we have faced, I know I am a better parent, a better husband and a better man because of those challenges. We understand Grant’s needs and are so focused on guiding and helping him each and every day. We take nothing for granted. Wise people have told me the key to fulfillment in life is to live each moment fully. Grant brings that quality to our life. Even with the difficulties we face, we try to remember that and remain grateful.

5. Work with an organization like Easter Seals.

Matt goes on to talk about how much his son Grant enjoys attending Kaleidoscope in Dublin after school — link to a blog post here to read about Kaleidoscope being named 2011 Organization of the Year by the City of Dublin.

This week Easter Seals unveiled Make The First Five Count, a new advocacy effort to raise awareness for the importance of early detection and intervention within the first five years of a child’s life. Staff members from Easter Seals have been working all over the country during Autism Awareness Month to let people know about Make The First Five Count, but sometimes no one can get the word out like a parent can. Thank you for your eloquent and honest blog post, Matt Riley. And thank you, Laura Shumaker, for having the great idea to feature Matt as a guest blogger for City Brights..

Not enough day care centers

by Crystal Ward

An article in the Daily Herald called No room for suburban special-needs kids? reports on the plight of families looking for day care when their child has a disability.

The Americans with Disabilities Act prevents child care facilities from dismissing or not accepting children solely because they have special needs. The law requires centers to “make reasonable modifications” to their policies and practices to accommodate a special-needs child. The law doesn’t define what “reasonable” means.

Kelly Lopresti, the Director of The Lily Garden here at Easter Seals DuPage and the Fox Valley Region, was quoted extensively in the article, which appeared on the front page of the paper. Kelly shared how Easter Seals DuPage and the Fox Valley Region is one of the few child care providers to offer an inclusive environment for children of all abilities.

“We need to find and create other quality child care centers so we can get these kids with special needs off the waiting lists. There just aren’t enough options out there.”

Read the entire story and you will truly understand the need and importance of The Lily Garden. Thank you to all of the teachers, staff, and donors who enable us to provide this necessary service for our community.

From Melrose Place to Cafe Mom

by Kristen Barnfield

I was thrilled when I heard from CafeMom.com that they wanted to honor Easter Seals as part of their Autism Awareness Month activities. CafeMom.com is a leading website for mothers. It has a large community of mothers of children on the Autism spectrum, and I just found out that one of the founders of the site happens to be Andrew Shue. Yes, the Andrew Shue that I used to watch on Melrose Place years ago — take a look at his interview about CafeMom.com with Good Morning America.

CafeMom.com wants to donate to non-profit organizations in honor of Autism Awareness month, and they’ve made it really easy for their visitors to help. They’ll make a monetary donation to Easter Seals based on the posts, or “bumps” Easter Seals receives to a donation page on their site. Just type “bump” under the comment section or click on “bump post.” CafeMom.com will donate one cent for each bump, so “bump” and/or comment often! To learn more about what CafeMom.com has to offer this month, link to their Autism Awareness Month post.

Washington roller coaster

by Katy Beh Neas

Its been a roller coaster of a week! No government shutdown, but Congress passes legislation that includes cuts to key disability programs. The President gave a speech that lays out his vision for achieving long term economic security and the House passed a budget that takes away the entitlement of health care to low income people with disabilities, including children with autism.

No wonder I’m tired!

But, I was completely energized when I heard the president say on Wednesday:

But let me be absolutely clear: I will preserve these health care programs as a promise we make to each other in this society. I will not allow Medicare to become a voucher program that leaves seniors at the mercy of the insurance industry, with a shrinking benefit to pay for rising costs. I will not tell families with children who have disabilities that they have to fend for themselves. We will reform these programs, but we will not abandon the fundamental commitment this country has kept for generations.

Whatever your political stripes, please stay informed and get involved. Congress and the White House are making decisions that affect the lives of people with autism and other disabilities. They need to know what their decisions mean to you.

On newsstands now: Easter Seals in Parents Magazine!

by Kristen Barnfield

Easter Seals is very jazzed to be featured in another issue of our favorite monthly, must-read magazine: Parents.

The May issue of Parents magazine features a 5-page-spread about Easter Seals Make the First Five Count — our new awareness and advocacy effort designed to give children with or at risk of autism, developmental delays or disabilities the right support they need to be school-ready and build a foundation for a lifetime of learning.

Every year, millions of young children with unidentified disabilities enter school with learning and health issues that put them far behind their peers and have a lasting, negative effect on their ability to meet their full potential. Many will never catch up. But we know young children with special needs, autism and developmental delays can succeed in school alongside their peers if they receive early intervention services — therapies that work to strengthen their physical, social, emotional and intellectual abilities at a very young age.

Through this feature, Parents is really helping us spread the word about the importance of early intervention. We want every parent to know more about their child’s development, where to go for help if something doesn’t feel right, and how to take action early.

It’s a message that rings true with Easter Seals’ family of corporate partners, too. The Parents spread was made possible by our corporate partners (including CVS Caremark and MassMutual) and it highlights different ways these companies are working to raise awareness and funds for Easter Seals services for young children.

Be sure to pick up the May issue on newsstands now to learn much more about Make the First Five Count or go to our Media download page to get a preview of the piece. In it you’ll find where you can “shop where it counts” this month. You’ll see which retailers are supporting Easter Seals services for young children with autism, developmental delays and other disabilities — and get a few good deals and special coupons while you’re at it.

Hair Cuttery takes autism personally

by Beth Finke

I just found out that Hair Cuttery keeps an Official Hair Cuttery Blog. And guess what? Last Monday they blogged about us!

Throughout Autism Awareness Month in April, consumers can visit more than 900 Hair Cuttery salons nationwide to “Act For Autism” to support Easter Seals services for families living with autism in their communities. Hair Cuttery fundraising throughout the country will include point-of-sale consumer donations.

Dennis Rather, Founder and CEO of Hair Cuttery, is quoted in the post saying that Hair Cuttery salons across the country are “truly ready to ‘Act For Autism’ since many in our Hair Cuttery family have been personally touched by the condition.” A story I read in the Arlington Patch speaks to that point:

Hair Cuttery stylist Lisa Boule has dealt with autism personally.

“When my son was diagnosed with Asperger’s syndrome, a form of autism, at the age of six, I knew my whole life would change,” said Boule, who took three years off to help her son with his diagnosis.

“My son and I always try to do something in April for autism, and I was extremely excited when I found out that Hair Cuttery was committed to the cause as well,” said Boule.

The Hair Cuttery store that Lisa Boule works in is located in Arlington, Massachusetts. She was also quoted in the story saying how pleased she is to work for a company that supports such a personal cause.

“My hope is that, with the help of Hair Cuttery employees and customers across the state and nationwide, people will begin to understand autism and the challenges families like mine deal with every day,” she said.

Amen to that.

Ten best places to live if you have autism

by Patricia Wright

Every parent wants the best for their child. For some families the “best” sometimes means choosing a new place to live. Families have asked me where the “best” place to live is if you have a child with autism. They wonder whether there is one location where services are all top-notch, a place where their child could be guaranteed access to quality treatment and a wonderful community of support.

The good news is that there are great communities and service providers in many locations. And the bad news is that even in the most service-rich areas, not every child is receiving quality intervention. I have worked in dense urban environments (San Francisco) and rural/remote environments (Alaska). Both settings delivered fantastic services.

Autism Speaks just completed an on-line survey on the ‘Ten Best Places to Live if You Have Autism.’ The report has some great stories about communities and their support for residents with autism. The majority of the locales were large urban settings. This may simply be an issue of volume — there are more people whom can respond in New York City than there are in Paducah.

But even in the large urban centers, the majority of respondents in the survey felt that services were still lacking. When asked, I tell families to try to determine where they might find the greatest amount of support. When I was working in rural Alaska, some parents felt some sense of urgency about moving to a larger city for better services. Then I’d see their child with autism playing after school with their cousins who lived in the village, attending school in the village alongside classmates they had grown up with since birth, fishing with their grandfather who was an elder in the village. These children may have had to take a plane in order to see a neurologist somewhere, but they were able to spend every day with an incredibly supportive community.

So where IS the best place to live if you have autism? Parents every day make this personal decision. I look forward to the day when there is no “best” place to live … because every place will be a good place to live.