Jack scores a touchdown

by Allison Knopp

Jack McGraw has cerebral palsy and relies on a wheelchair for mobility, but as he would say, “So what? I’m still awesome!” As if to prove this, Jack scored a touchdown last fall for his middle school football team!

Jack has been a client of Easter Seals DuPage and the Fox Valley Region for nearly nine years, and in addition to being a football star, he’s a TV star, too — you can watch the ABC news story about Jack’s October touchdown online. Two months after that memorable day, I interviewed Jack’s mother, Jill McGraw, on what it meant to see her son score for his team, and how Easter Seals helped Jack get into the end zone.

Allison: Can you tell me the story of Jack’s big touchdown? How did you and Jack feel during the big moment?

Jill:The coach put Jack in for a play near the end of a game. The quarterback gave Jack the ball and he drove his wheelchair over the goal line. The best part — for me — was the way the spectators, team and cheerleaders responded. The minute Jack began to drive onto the field, his teammates started cheering his name, and the cheerleaders did the same. As soon as he crossed that goal line, the crowd was on their feet cheering, his teammates and the cheerleaders ran out onto the field. That was the best moment for me. I was so touched by the support and acceptance. Jack’s peers have always treated him well and this was just a beautiful example of their love and acceptance of him.

As to his feelings, he really didn’t “get it” at first. People were telling him “good job” and things like that, and he kept saying, “It was easy, they didn’t try to stop me.” I explained to him that it was bigger than just the touchdown, that people were proud of him for handling his difficulties with such a positive attitude, and that they were proud of the sportsmanship showed from both teams, and that they are touched by his role with the team and their acceptance, so many things, really. He was pretty proud of himself, and definitely enjoyed the attention!

Allison: How did Easter Seals help Jack reach his goal of scoring his first touchdown

Jill: Jack works so hard in physical therapy — he wouldn’t be able to maintain the independence he has without Easter Seals. His ability to drive his wheelchair and positioning in his chair are key factors in his ability to achieve this goal. Outside of the actual physical benefits of therapy, being a client at Easter Seals has taught him about perseverance and hard work.

Allison: What is Jack’s next goal in sports?

Jill: He wants to continue to participate in sports teams with his peers. Right now, he is enjoying being a part of the basketball team. He doesn’t really have a specific goal, just enjoys participating and contributing any way he can. His therapists help by continuing to push him to work hard, gain strength and keep and increase his independence, both physically and verbally. His ability to be understood when he speaks has improved a great deal through speech therapy.

Allison: Is there anything else you’d like to tell us about Jack or his experiences with Easter Seals?

Jill: Our experience with Easter Seals has been wonderful. We have always been treated well. Jack is pushed to work hard and achieve all that he can. Jack is a very determined, sometimes stubborn, young man. He has an optimistic, happy view of his life, despite his difficulties. His experience with Easter Seals has certainly helped him to realize that he can have a satisfying and productive life as long as he continues to work hard.

You can follow Jack McGraw’s adventures on his blog, I have Cerebral Palsy … so what, I’m still awesome! Thank you Jill, and congratulations, Jack!

Resourceful, opinionated, strong and wise

by Patricia Wright

If you read my post about the THRIVE program and my attendance at its Capstone Event in Boston, you’re going to love this one written by the true magic maker of the event. Sandy Ho is the Program Coordinator at Thrive, a mentoring program based at Easter Seals Massachusetts that matches transitional-age women from ages 16 to 24 who have disabilities with an older woman in their community who also has a disability. Sandy wrote a post about Thrive on her blog Perfectly Imperfecta, and I liked it so much that I immediately asked her to write a guest post for us here at Easter Seals.

Calling my own shots

by Sandy Ho

Here’s something you need to know about me: I am a young woman with a disability. Throughout the process of coordinating the Thrive Mentoring Program and the conference, I was routinely faced with acknowledging how much growing I still have to do. The capstone conference was held over a two-day weekend, and I had the privilege of spending it with 16 other women, 12 of whom were members of the mentoring program to empower transitional age young women with a disability.

At the start of the conference I asked each attendee to finish this sentence using one word: “An empowered woman is…” We did the same activity at the end of the conference, and what was so powerful about this is that each woman was able to fill in the blank for herself, and for her own reasons.

What did we do in between? Well let’s not forget the ten guest speakers we invited too!

• Our adaptive yoga instructor showed me that being a young woman with a disability involves being okay with who you are right at this moment. Whatever your body can or cannot do doesn’t matter, because when we are mentally in-tune with our breath, there is an attention to being connected with our limbs. I might have avoided even trying this before.
• From the author who read from her memoir, I was relieved to find out there is someone else who knows what it’s like to be raised by a mom who wanted to “correct” those “weird” physical habits that come with having a disability.
• Presenters on overcoming ableism made me realize that being a young woman with a disability means I need to be more attentive to the society I live in and to the structures that are in place.

This is a community of incredibly strong willed women! They’ve taught me that there is no square box that we were each meant to fit in, and maybe the whole point of being an empowered young woman with a disability is that I am resourceful, opinionated, strong, and wise enough to call my own shots and do whatever I wish to do. The Thrive program and the capstone conference has shown me I don’t need anyone’s permission to try.

A tough day

by Jennifer Dexter

Tuesday was a hard day. The Senate failed to ratify the Convention on the Rights of Persons with Disabilities (CRPD). The vote was 61-38 in favor but it needed 66 votes to be approved.

Easter Seals and other organizations have worked for many years to finally get to this vote, and you can link here to see how your senators voted.

Easter Seals worked hard to try to fight opposition that was spreading misinformation, and we did it by staying focused on the facts:

• The Convention does NOT mean we have to change or abide by any law but existing U.S. law.
• It does NOT allow other nations to meddle in U.S. law or with U.S. citizens.

This information comes from top bipartisan legal scholars including Dick Thornburg, who was U.S. Attorney General under George H.W. Bush.

I was sitting in the Senate gallery with many of my colleagues and friends from the disability community and it was painful to watch how the vote was affecting people. Many in the gallery were in tears by the end of the vote.

Easter Seals supports the Convention on the Rights of Persons with Disabilities. The CRPD is critical to expand the rights provided people with disabilities in the United States (through landmark civil rights law like the Americans with Disabilities Act and the Individuals with Disabilities Education Act) to the rest of the world. In addition, it would help protect Americans with disabilities who work and travel abroad (including disabled American veterans and military family members) from discrimination.

When the 113th Congress convenes next year, we will continue to push for ratification of the Convention. This is not over yet.

Learn about our groundbreaking new Siblings Study

by Rachel Talen

I just love infographics. I’m a visual learner, so I’d much rather see information than plough through a lengthy document. That’s why we thought this infographic would be a fun, colorful way to share Easter Seals’ Siblings Study, which was just released today!

The Study was conducted by Ipsos Public Affairs (an independent research firm) and will help us better understand the challenges adults who have siblings with disabilities face, and compare the perceptions of these adult sibling relationships with those of the general public.

You might remember the post I wrote about Joseph and his sister, Mary and how much joy she brings to his life — siblings who care for their sibling with a disability who responded to our study said their sibling has had a positive impact on their quality of life, helping them develop patience, understanding, compassion and providing perspective. These sorts of feelings were reported more by people who had siblings with a disability than respondents from the general public.

The number of adult siblings who reported to the study and said they are already the primary caregiver for their sibling with a disability is 23 percent. That’s a shocking statistic, especially when many primary caregivers report they don’t get emotional, physical or financial help from friends and family. Nearly a third of Study respondents who were not already the primary caregiver said they expect to assume this role in the future.

Sibling relationships are our longest-lasting relationships, so we hope that this new infographic and the Siblings Study will arm sibling caregivers with the information they need and will encourage others to self-identify as a caregiver to help them start thinking about their sibling’s future.

Study sponsor and Easter Seals corporate partner MassMutual can help with financial planning when it comes to caring for a loved one with a disability. MassMutual is committed to serving people living with disabilities through its exclusive SpecialCare program, an innovative solution that gives families with individuals with special needs access to information, specialists, and financial strategies that can help improve their quality of life.

Easter Seals will use these findings to raise awareness of and advocate for the life-long services and supports families and caregivers desperately need. Siblings can link to the study to find various resources and support groups available to them — supports that can help them better care for their sibling while juggling their own needs and those of other family members. Be sure to check out the findings of the Study to find out where you can go if you need services and supports. And if someone you know is caring for a loved one with a disability, please share the infographic with them, too.

Empowering young women with disabilities

by Patricia Wright

Last month I spent one absolutely awesome weekend with a group of dynamic young women in Boston. Easter Seals Massachusetts facilitated a capstone event for Thrive, a mentoring program for women between the ages of 16 and 25 who identify as having a disability.

Thrive started a few months ago with young women with disabilities being matched with adult women with disabilities. The belief was that young women with disabilities have unique needs that a mentor could address unlike anybody else. The mentors and mentees met in-person, on the phone and via electronic communication over a period of several months. The relationship between the mentors and mentees allowed for open communication, and both mentor and mentee benefitted from the relationship.

The Thrive capstone event last month was two days of workshops, guest speakers and a lot of time to socialize and develop connections. I overheard many conversations between the mentors and mentees. All stated how important it was to spend time learning from other people with disabilities and building a shared community. Conversations covered these topics and a whole lot more:

• how to be more independent,
• work tips,
• safety,
• sexuality and relationships, and
• advocating for quality healthcare.

As you can see from the pictures, the Thrive capstone event was a celebration of women, a learning opportunity and just a whole lot of fun!

My grandchild has autism: resources for information and support

by Patricia Wright

Having a grandchild with autism can present unique challenges. Easter Seals recently developed a training resource that can be used by supporting groups and others interested in enhancing the skills and knowledge of grandparents of children with autism. Grandparents and Autism Connect is a modular curriculum that covers :

• overview of autism
• families
• communication
• behavior
• community integration
• socialization

Each module includes a presentation, facilitator script, pre-post test and answer key, along with handout materials.

Another great new resource for families is Grandparents Guide to Autism Spectrum Disorders: Making the Most of the Time at Nana’s House. This book is written in a friendly, positive style and is full of tips and suggestions for grandparents. This quote from the book gives a great perspective on its content :

Nobody wants to leave one grandchild out. So, it’s important to get a handle on grandparenting the child with ASD. With a little bit of information and a few tips that work, you’ll learn to be a vital part of your grandchild’s life and enjoy the experience.

Easter Seals strives to support the entire family of people with disabilities. Grandparents are an important part of the family, and Grandparents & Autism Connect and Grandparents Guide to Autism Spectrum Disorders: Making the Most of the Time at Nana’s House are two go-to resources for information and support.

“What I hoped Apollo would gain, he has already achieved”

by Bob Glowacki

I have a confession to make. I am a closet crier. I even get over-emotional sometimes when I write one of these blog posts — it’s so personal, so powerful to reflect on the life changing work that happens here at Easter Seals Southeast Wisconsin that I can’t help myself. Today I’m sharing one of those stories, and yes, it did make me cry.

Apollo says “I Love You” every night

by Haley Grebe

From the moment he was born, our son Apollo has always been the most loving child I have known. He has countless kisses, hugs and cuddles to pass around. But when he was 2 years old we became very concerned that he was not responding to his name. He wasn’t looking at us, or playing with us, either.

After two years of hunting for good schools, doctors and therapy programs, we found some very good matches, and Easter Seals Southeast Wisconsin was one of them. I was especially attracted to the way Easter Seals promoted family involvement so that the concepts of therapy could be incorporated into daily life.

In the beginning there was a very detailed plan to help Apollo reach his goals, and our opinions were always taken into consideration too.

On the very first day we met with Easter Seals our lead therapist said, “when he starts talking” and continued her sentence. I thought her thinking was very optimistic, but little did I know that our essentially nonverbal little boy would speak a couple thousand words in his first year-and-a-half of therapy. Apollo has progressed at a rate that far surpassed any expectation I had:

• His tantrums decreased from 8 hours down to twenty minutes.
• His eye contact and ability to greet people are as common as his big brother’s.
• He started drawing pictures that were extravagant in place of repeated circles.
• He can sit at a table to eat or do short periods of age appropriate work when he is asked to.
• When he hears that we are going for a ride he will quickly walk to get his shoes on.
• Very often he will share things on his own terms that nobody told him to.
• He is learning how to express all of the great knowledge that he knows.
• He will use the bathroom almost every time when asked, but he of course would like three pieces of candy as a reward each time!

The ideas that our family have learned will help our lives and Apollo’s life be much more peaceful and content. What I hoped Apollo would gain through therapy, he has already achieved. This all would have never been possible without the patient, caring and devoted team of people that laugh, play, and teach Apollo every day. It is obvious in their smiles and attentiveness that they care about and enjoy seeing the kids make progress.

Apollo still has one-and-a-half years left, and I cannot wait to see all the wonderful things he will do next. His possibilities are endless.

Oh, and I saved the best for last: Apollo says I love you to his brother, mom and dad every night. Thank you to his team. You are all amazing.

Tell us about your everyday victories!

by Rachel Talen

We’re so excited to introduce Step by Step, a weeklong social media showcase of kids and their developmental milestones. We realize a milestone can be about more than first steps or first words, so to SHOW you how our nation’s kids are growing up, we’re sharing small, everyday victories. That way, more than just the parents can celebrate with them.

We often notice physical or motor milestones first, but it’s so important to call out the communication, problem-solving and personal-social milestones as well. For instance, one of our favorite bloggers Ellen Siedman published a post about her family’s important milestone: her son Max ate a slice of American cheese without getting it all over himself. A “woo hoo!” indeed.

If you have a milestone photo you’d like to share, please post it on our Facebook page anytime! Easter Seals created a separate handle for Make the First Five Count (@FirstFiveCount) because it’s THAT important. We really want to home in on what people are saying about early intervention specifically, provide help and resources where needed, and continue the conversation!

You can follow the conversations via Facebook and Twitter with hash tags #FirstSteps and #First5Count. And if you know a child five and under, please take the Ages and Stages Questionnaire online survey to make sure they’re meeting those milestones.

Thankful for our veterans and service members

by Rachel Talen

Staff Sergeant Donnie D. Dixon

I have something new to be thankful for this Thanksgiving. Let me explain. Earlier this year, Easter Seals partnered with retired U.S. Army COL and former Special Assistant to the Chairman of the Joint Chiefs of Staff David W. Sutherland to form the Dixon Center for Military and Veterans Services.

Dixon Center is named in honor of Staff Sergeant Donnie D. Dixon. He was a career soldier — and a husband and father — who was killed during his second tour of duty at the age of 37 in Baloor, Iraq. Dixon’s mother said, “he died doing what he always wanted to do … serve his country.”

It’s a unique project: under the leadership of COL Sutherland and Kimberly Mitchell (I’ll be telling you more about Kim in a post coming up soon) Easter Seals gets to be a huge part of a nationwide network of collaborative, community-based services and supports for military service members, veterans and their families.

An article in the Washington Examiner refers to a white paper COL Sutherland co-wrote while serving in the Pentagon. That white paper reports there are more than 400,000 registered websites for donors and organizations supporting service men and women. The article explains how Dixon Center aims to become a clearinghouse for finding the best local, state and regional services. COL Sutherland is quoted about why this is so important:

“We realize that there are some things that government just can’t do that independent groups in communities can … More than anything else, we’re looking for community leaders to connect with those who have served.”

Before hearing COL Sutherland speak last May, I didn’t know much about what is going on overseas and felt very removed from military-related issues. After hearing him tell several real-life stories about his friends who just needed a little help with reintegration in order to thrive, I came to the realization that these people have faces, families, injuries that need care and communities that can help. His talk completely transformed the way I think about the military and veterans. I am thankful for their continued service and for my heightened awareness around the difficulties so many American families face. Thanks to them, we all have a lot to be grateful for this Thanksgiving.

Lending an ear to special brothers and sisters

by Patricia Wright

“Siblings have the longest relationship, longer than parents.” Don Meyer, the director of the Sibling Support Project, shared this statement with me during my first conversation with him, and hearing it truly changed my behavior. It led me to become an advocate in ensuring siblings of individuals with developmental disabilities are included and supported in the social service realm.

Easter Seals has many programs designed to support siblings. One of our most popular sibling programs is Sibshops. Sibshops are available at many affiliates including Southeast Wisconsin, Crossroads (Indianapolis), Oregon and many others. We strive to be a support to the entire family that has a member with a disability.

The Sibling Support Project is a national effort dedicated to the lifelong concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. The Sibling Support Project’s groups have connected tens of thousands of sisters and brothers from around the globe with their peers, providing members with validation, information, and advice.

In addition to learning about the Sibling Support Project I encourage you to review the Facebook and Yahoo! Groups listed below.

• SibNet is a warm and thoughtful community and the Internet’s first and largest group for siblings of people with special needs. Intended for adult siblings, SibNet connects members from around the world. The SibNet is available as a Facebook group and a Yahoo! Group.
• SibTeen is now available as a Yahoo! Group and a Facebook group, too. We have wanted to create a place on the Internet just for teenage brothers and sisters For quite a while, and we’re happy to announce that SibTeen Is here.
• SibKids is a Yahoo! Group just for young sibs where they can discuss their brothers and sisters — and maybe music, movies, school and their lives. SibKids has volunteer adult sibling and parent “camp counselors” who help make SibKids a safe place to hang out.
• SibParent Is a Yahoo! Group where parents of kids with special needs can talk about their “other” kids.

Take a look and join the conversation!