I asked Jeanne Downey, friend, colleague, parent, and ARC of PA President if she would be a guest blogger. I’ve known Jeanne since we were both young professionals beginning in our fields of human service. Since then, Mary and Ryan were born and both of us began the journey of parenting a child with special needs. I enjoyed Jeanne’s insights; I’m sure that you will as well!
~ Maureen
“The snow glows white on the mountain tonight
Not a footprint to be seen
A kingdom of isolation,
And it looks like I’m the queen.” (Frozen)
Frozen is the blockbuster Disney movie, spanning all groups. You can’t go anywhere without hearing a child (or adult) singing “Let it Go…” But initially, I wasn’t a fan of the story-the parents hiding away their one daughter, Elsa, who was “different”; Elsa being isolated because she thought she is some kind of monster, and her sister, Anna, who just wants to play with her , but Elsa resists because she was afraid of hurting her. 
I felt this is what happens to many families who have children with disabilities and it made me sad. But after watching the movie several times, I saw a different parallel to the lives of people with disabilities-there are ups and downs in our lives and sometimes we just want to run away; we should try to accept and help people who are different from us, even if those differences can be a little scary; there are battles that we must fight; and true love is what helps us rise above it all and live!
“It’s time to see what I can do
To test the limits and break through
No right, no wrong, no rules for me
I’m free!” (Wicked)
Over this past year, our advocates have waged some significant battles and have WON! They have “broken through” in many ways. These battles have included:
ABLE ACT: Sara Wolff, Self-Advocate & Arc of PA Board Member, has been a tireless advocate and she even testified in Washington DC before the US Senate Finance Subcommittee in July 2014. Achieving a Better Life Experience (ABLE) Act creates tax-favored savings accounts for people with disabilities that would not count toward the $2,000 individual asset limits that apply to the Supplemental Security Income (SSI) and Medicaid programs. Sara’s passion changed “the way things are” in terms of future planning for people with intellectual and developmental disabilities!
CHLOE’S LAW: Kurt Kondrich, father of Chloe & Arc of PA Board Member, passionately spearheaded advocacy efforts that led to the passage of Chloe’s Law, the Down Syndrome Prenatal Education Act. This legislation, which was signed in to law by Gov. Corbett in October 2014, mandates that medical practitioners give expectant or new parents “informational publications,” relating to Down syndrome. Kurt’s true love of his daughter led him to challenge current medical practices and change “how it’s always been done” to families expecting a child with Down syndrome.
In 2015, let us ALL make a commitment to impact and improve the lives of people with intellectual and developmental disabilities. It may be at your local schools, places of worship, transportation systems, employers, medical professionals, law enforcement agencies, volunteer groups, sporting events, travel and entertainment activities, etc. There may be something bothering you and as you pursue it, you will probably find that it also bothers many other people. That’s what grass-roots advocacy is all about-not settling for “the way things are” and turning away when we are told “because that’s how it’s always been done”. We make these efforts because of our true love for our family members and friends, and the results impact those that we’ve never even met. Let’s energize our advocacy efforts-we need to turn away from systems and practices that result in isolation and slam the door on limitations placed on people with intellectual and developmental disabilities.
Let it go, let it go
Can’t hold it back anymoreLet it go, let it go
Turn away and slam the door! (Frozen)
This morning, students from 21 classrooms ranging from preschool through high-school age participated in an event that has been a holiday tradition for more than two decades. Many of the faculty and students work for weeks to practice routines, and prepare costumes, scenery and props for their performance.
I had the privilege of attending the funeral service for Paul W. Layden, Sr., M.D. this past Saturday. Dr. Layden was a volunteer at the Barber National Institute for 51 years. When Dr. Layden began, physicians were truly not interested in providing services to children and adults with intellectual challenges. Not Dr. Layden. He gave all the time he could, both personally and professionally.
The Barber National Institute was founded on the belief that the right to work is a fundamental human right. Unfortunately, too often persons with disabilities are not considered for employment because of negative perceptions or the incorrect assumption that accommodating persons with disabilities will be cost prohibitive. On IDPD, we drew attention to the available technologies and measures that can create work environments that are open, inclusive, and accessible.
We at 
Is it possible? Ryan is turning 21 today! This is one of those special days where I love to take a moment to reflect on my journey with Ryan. I enjoy looking at his pictures that remind me of some of our “momentous” occasions, and I thought I’d share a few with you as well.
Hearts.
As I look back on the past 21 years of this journey, with its peaks and valleys, I’m very proud of who Ryan is, how he has grown and matured, and his numerous successes along the way. Today, his days are busy, divided between work at Bello’s Market and BNI. Before and after work, you’ll find him on the track or swimming at LECOM, or doing any of his favorite sports, including golf, tennis, skiing, and bowling.
Wouldn’t it be great to avoid the rush of traffic and rising early and instead shop from home, while supporting children and adults with special needs?
Brrr … it’s 14 degrees in Erie with a -2 wind chill. Three feet of snow is predicted, but the storm has stayed over the lake. Thanks to the generosity of PNC Grow Up Great, 
Karen Kyler, COTA, followed the laser light, a virtual brush. This extraordinary painting took 12 months to complete. Todd’s painting was also on display at our annual Art Show in April.
All About Autism 