Three Families Take A Swing at Sharing Their PLAY Program Experience

This year, the Professional Baseball Athletic Trainers Society (PBATS) partnered with The Arc of the United States in order to promote the inclusion of children with intellectual and developmental disabilities in their PLAY (Promoting a Lifetime of Activity for Youth) program.  The program started in 2004 and exists at all thirty ballparks across the United States. Children from The Arc Baltimore and The Arc Central Chesapeake Region attended the Baltimore event at Oriole Park at Camden Yards last month.  Participants learned proper hitting and running techniques on the field, listened to presentations on steroid use, healthy lifestyles and nutrition, and met Orioles outfielder David Lough during a Q&A session. Three families shared their experience below.

Karen Best and her son Daniel
*Written by Karen Best

Daniel’s participation in the PLAY program at Camden Yards was a dream come true for my son Daniel. He enjoyed every minute of it, especially the opportunity to go out on the field and do hitting drills. I was thrilled to see Daniel having so much fun and interacting with the other children.  The health discussions were great and were very important for the kids to hear. After the Orioles player David Lough finished his talk about the importance of nutrition, he was kind enough to stop and take a picture with Daniel.

We moved to Baltimore from New York in 2000, and Daniel converted me from a lifetime Yankees fan to an equally die-hard Orioles fan as he got older. We don’t even pay attention to the Yankees anymore! So, when we found out that we were also getting tickets for the game that evening, we were overjoyed. Despite the rain delay and an Os loss, we had a great time. Thank you to everyone especially The Arc Baltimore and the PBATS for this unique opportunity.

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Becky Matthews and her daughter Raven
*Written by Becky Matthews

Raven had a wonderful time at the PLAY program event at Oriole Park at Camden Yards!  She went with her stepfather, Ron, and her Uncle Scott. They both had a great time as well.

Raven's favorite time of the day was when she got to hit the tee ball and run the bases. No one expected her to do it from the wheelchair. Raven likes to do everything. All she needs is a little help. After she hit the ball and Ron pushed her around the bases, everyone started cheering. She loved it! She knew they were cheering for her.

Raven loved hanging out with all of the other children. Listening to the presentations on health and wellness in the Orioles dugout was another favorite. Raven loved seeing everyone and the excitement of the event. Both Ron and Scott were very impressed at how well they were all treated and the accommodations made for all of the children. They were treated with kindness and respect, and were told to just let someone know if they needed anything.

Raven had a great time! I hope she gets invited back! Thank you!  

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Jennifer Mitchell and her son Justice
*written by Justice

The first part was Major League Baseball and all of its teams and players to help fight steroid abuse and to educate the young people of America about the dangers of steroids and promote a healthy and active life style.

The first part of the day at Camden Yards was to exercise. I even got to swing the bat at a baseball which I finally did hit - after a couple of swings.  Then, we went to the dugout where the team nutritionist spoke about eating healthy foods like fruits and vegetables (broccoli, cherries, bananas, corn, etc.)  We then went to the hygienist who spoke about personal hygiene, brushing your teeth at least twice per day, showering daily and using deodorant.

We were going to our last station where we would have done running drills and exercises, but all of a sudden, it started raining like cats and dogs.  Then, we went inside the locker room where Orioles player David Lough spoke to us about how, during his childhood, he ate healthy and exercised thanks to his mom.  We also got to ask him questions which I enjoyed.  We also got a goodie bag from the Henry Schein Cares Foundation. We then got news that we will get two tickets to the game scheduled for that night.  Even though the game was delayed due to rain, I still had fun.  From morning to night, it was a very long day coming to an end.

A great big thanks to the Taylor Hooton Foundation, Henry Schein Cares Foundation and The Arc Baltimore staff.

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To view more pictures from the event, check out the PBATS photo album.

Men Will Talk

By T.J. Casser, Father and Blogger

Being the parent of a child with a disability is a very lonely thing.  I don't think I fully appreciated that before my son's diagnosis of Autism.  

We live in a social culture, surrounded by friends and family with whom we can talk about seemingly anything, and life is sunshine and happiness… and then suddenly, there's a diagnosis and it seems to dominate every conversation.  And slowly but surely, you find yourselves alone trying to deal with it.

After our son’s diagnosis, my wife suggested that I start attending the “Guy Talk” support group at The Arc Baltimore.  I hadn’t previously even realized that such a thing - a support group for fathers of children with developmental disabilities - even existed.  However, I’ve never been against going to a support group, per se, but I’m a guy - I typically want to fix/do things, rather than sitting around in a circle with a name-tag on, talking about my feelings in some rote fashion.  (You know that’s the image that was in your head when I said ‘support group’, admit it.)   So, it took me a while to finally let her push me into going.

And attending was probably one of the best decisions I’ve made for myself, since the diagnosis.

For starters, Guy Talk is a small group - usually between three and eight or so men - that meets once a month for food and conversation at The Arc's offices in Towson.  If someone’s new, there might be a brief around-the-table introduction of who we are, who our children are, the diagnoses and whatnot, but more often than not, the conversation strays into more comfortable territory.  The issues of what’s going on in our lives, how our children are doing, their achievements and recent stumbles.  We share resources and advice about how to make things easier or more fun in the outside world.  And we have a lot of time to bond in the commonality of the daily struggles we’re all having.

As one of the dads said in the most recent meeting, Guy Talk is one of the places where you can talk about the fact that your school-age child is finally nearly toilet trained, and have a group of men who not only don’t think it is strange, but are very supportive and proud along with you about reaching the milestone.  It’s liberating and affirming in our roles as fathers of these children.

And most importantly, it reminds us that we don’t have to feel like we’re alone.

So, if you are the father of a child with a developmental disability, come check out Guy Talk.  Come to get things off your chest, come to grab some food, come to just listen… but come join us dads there.

You won’t regret it.

*****************

Editor's Note: 

If you enjoyed this guest blog post from T.J. Casser, you will want to check out his own blog entitled "Dad Enough" at http://www.dad-enough.com/ where he explores, with endearing wit, his role as a father of a son with autism.

A Mother's Prognosis

By Pat Rosner, Board Member and Parent Advocate

The following is an excerpt from an article I wrote in 1985 about my son, Danny. Please forgive the use of the word retarded. It was not yet extracted from our everyday language.

A MOTHER’S PROGNOSIS

Danny turned six last October. At his birthday party he said “Thank you very much for my present”, blew out two of his six candles, ate his dinner (with a scoop dish) independently and sang “Happy Birthday” to himself.

Dan, age 6

Dan is multiply handicapped. He was born with hydrocephalus (“water on the brain”), small and opaque optic nerves and brain damage. The doctors looked at these problems and said, to the best of their knowledge, Dan would be severely retarded, totally blind, and seriously affected by seizures and cerebral palsy. They said he would probably never communicate effectively, never see anything at all, have seizures and never walk.

The doctors who see our children at birth are not trying to be mean. They are simply reporting a factual account based on their clinical findings.

Here is my factual account based on my clinical findings over the past six and one-half years:

   1. Dan is the most accepting and loving person I know.

   2. Dan is the most stubborn person I know.

   3. Dan has the highest threshold for frustration of any person I know.

   4. Dan deals well with pain.

   5. Dan is not a quitter.

Is it not a shame that there are no medical tests to measure personality, character and stamina? Perhaps then I could have been the one to give a prognosis on Dan: that he would touch, in a very special way, everyone he meets.

2014

Dan & his wife Maria

Dan is now 34 years old. He has been with The Arc Baltimore since he was 21. He works five days a week at his vending machine business with a one-on-one job coach. He is supported in his home where he lives independently with his wife of 9 years.

Back in 1985, I was confident in Dan’s strength of character but had no understanding for all of the challenges he would encounter. As an adult, he met those challenges with the life changing support of this agency.  My husband and I recognized the importance of the supports The Arc Baltimore could offer him and became involved as volunteers.  I am currently a proud mom on the Board as a parent advocate.

As Mother’s Day approaches let me say that I couldn’t be more proud to be Dan’s mom. Oh and, by the way, I was right. He has touched, in a very special way, everyone he has met.

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Editor’s Note: Pat Rosner is an active board member, a member of our Human Rights Committee, and a participant in our "Moms Understand" support group. In addition, she is a recipient of our President’s Cup award that is presented to a board member each year who provides exemplary service to The Arc.

Family, Staff, a Doctor and a Determined Young Woman Bring Meaning to Pillowcases

By Mary Anne Kane Breschi, President of Maggie's Light

Last month, my daughter, Maggie Breschi (who has multiple disabilities), along with her co-worker and staff from The Arc Baltimore, delivered 75 pillowcases to her orthopedist, Dr. Shawn Standard, of the Rubin Institute at Sinai Hospital in time for his mission trip to the Dominican Republic.  About a year ago, when Dr. Standard learned of Maggie’s interest in sewing, he challenged her to make pillowcases for the children he and his colleagues would be caring for during their mission trips in 2014.  He said, “Maggie, if you’ll make the cases, I’ll provide the pillows. We’ll give them to the children who have very little, let alone a place to lay their head.” Maggie agreed.

When Maggie was born 22 years ago with developmental disabilities, our pediatrician –at the time- instructed us not to bond with her. She told us not to introduce her to her three older brothers, and not to take her home. If we did, she warned, the challenges & circumstances surrounding Maggie’s disability would destroy our family. These words were devastating. They offered no hope of a cure or positive outcome, let alone how we might obtain the resources & support we needed to make it possible to love and care for Maggie in our home – which is all we wanted to do.

Needless to say, the first days of Maggie’s life were difficult. Not only were we focused on her medical needs and identifying a diagnosis, I had already begun to think about her future. I was scared. What will it be? Will she have friends?  Will she have the opportunity to do what little girls do - play dolls, have sleepovers? Will she go to prom? As an adult, will she have opportunities? What about a job? Will her life have purpose and meaning? And, will anyone besides us love her? These were terribly difficult questions for me, difficult because I had no answers or at least none that I liked. I lived in a community that did not embrace children and adults with developmental disabilities, let alone value them. They didn’t fit. I lived in a community that thought it best to place its children with disabilities in institutions to be forgotten, so as not to be a burden to their families. I was so sad.

But no more, thanks to you…

Maggie Breschi, in her work space, at The Arc's
center in Dundalk

Yes, Maggie has cerebral palsy. She is non-ambulatory, and is fed via a G-tube. Yes, she has a cognitive delay, is non-verbal and uses a Dynavox (assistive technology) along with signs, gestures and vocalizations to communicate.  Yes, she developed a seizure disorder in her teens and had fourteen major surgeries by the time she was seventeen. And yes, she requires complete care and assistance with all that she does, but in spite of all of these challenges – she understands, cares, and loves her life. Just ask her.  She’ll tell you this and more. She loves going to The Arc Baltimore where staff (whom she loves) have created an environment tailored to her needs. They make it possible for her to sew with her friends, and to provide pillow cases to Dr. Standard, who has always treated her with the utmost respect, kindness and care. He, in turn, can brighten the lives of other children with special needs who live very far away, and who might now have a place to lay their head at night or a colorful sack with which to carry their belongings the next day.

Maggie along with Dr. Standard (far left) and her friends and staff from The Arc Baltimore

As Maggie’s parents, my husband and I thank Dr. Shawn Standard, The Arc Baltimore, Towson University’s Occupational Therapy Department & JHU’s Biomedical Engineering Students (who designed and created the adaptive switch for the sewing machine) for making it possible for our daughter to lead a life filled with opportunity, purpose and joy as she touches the lives of children and their families living in the Dominican Republic and other parts of the world. In our wildest dreams we never imagined an opportunity such as this for her that creates a community in which Maggie finds friendship, health, opportunity, a sense of purpose, meaning & joy. For all of this and more, we are eternally grateful!

With the utmost sincerity – thank you!

Mary Anne Kane Breschi

A Generosity of Treasure and Spirit

By Kate McGuire, Chief Advancement Officer

The November and December holidays are often a time at The Arc Baltimore when we are reminded how deeply our members and contributors care about people with disabilities and about our mission and what we do here. Their offerings and responses to requests are motivating to us – and can be humbling. Let me tell you why.

We sent out a holiday appeal earlier this month and told a story about John from one of our programs in Towson. To put it mildly, he loves to give presents and he takes great care over many months to select meaningful presents for everyone on his shopping list. The story touched more than one reader as notes congratulating John have accompanied contributions.

But there was one note from someone who could not send a contribution, but who took the time to write a note and express her appreciation for our work and explain why she could not send a check. She has a nephew with autism and she is trying to help the family with some expensive therapy needs. She hopes to give to us again in the future.

Some families we know make a small gift every month. Some do it with an automatic debit from their credit card so they can spread their gift out over the year. Some of our families do the same, but retain a habit from years past and send their monthly gifts in envelopes we’ve provided, or in their own.  This habit often continues, even if a loved one we knew may have passed. One such gift came last week from a mother who is missing her daughter who passed away suddenly this past year. We feel her anguish. November and December holidays aren’t always easy times.

A long-time board volunteer heard about a new program we are fundraising for (with a challenge grant fundraising match requirement) and he increased his usual contribution by nearly 40%. Another board member responded to a request for Thanksgiving food packages – and delivered an overflowing bag the next day. Our volunteer leadership are so invested in our mission and we appreciate their commitment.

Lastly, an employee of one of our employers contacted me last week. He said that his division collects $1 every week from employees who want to enjoy casual Friday dress. They want to give the collection to The Arc. It’s such a small way to make a difference – but so meaningful.

These are but a few recent examples of the generosity of treasure and spirit that we witness. Donations come large and small, and honestly, mostly small, but no less impactful. We work hard to remind and convince our readers that it’s a good time to give. State funds are very restricted. It’s the contributions from family members, friends, and others who admire and care about people with disabilities that can help us do the extras – emergency assistance for eviction prevention, construction of wheelchair ramps, outings with friends, or even a telephone headset so a gentleman who can’t grip the receiver can still talk to his girlfriend. Simple things. Vital things.

These “extras” aren’t really extra to the people we impact. They are essential. It’s why we shared John’s story and why we appeal for your support. It’s why we are grateful for every single contribution entrusted to us.

Thank you, and no matter the holiday you celebrate, let it be peaceful, healthy, and full.

A Continuum of Supports For Families Made Possible Through Agency Restructuring

By Nellie Power

Assistant Executive Director of Outreach and Family Services

We’ve made some recent and exciting changes that we wanted to tell The Arc community more about.What were formerly the Child & Family Services Division and the Outreach and Community Access Department have been merged and are now called: The Outreach & Family Services Division. There are three departments in the Division: the Outreach Department, the Foster Care Department, and the ‘Family Living’ Department. Family Living is an apt descriptor of the services we provide across the lifespan for both children and adults living with family members. While The Arc Baltimore is already known for the high quality supports we provide to individuals and their families, this restructuring was initiated to achieve a number of goals:

• To combine the 2 agency “Front Doors” so that anyone seeking service, whether child or adult, could be assisted by an expert Outreach Specialist. We already provide support to thousands of individuals and families seeking information, resources, and publicly and privately funded direct supports. Combining and expanding our internal resources allows us to even more quickly respond to our community while building an integrated team, sharing knowledge, and working together seamlessly.

• To more mindfully and intentionally meet the needs of supported individuals who live with their family. Those services are inherently different than those provided in an individual’s own home, assisted living unit (ALU) or other shared living space, because the family is the cornerstone. We look forward to using best practice approaches to family partnerships that achieve the shared goal of independent individuals thriving in the community and finding joy in their experiences!

• To build on our expertise and expand our supports through all of life’s “transitions”. An obvious transition is that of a young adult moving from the education system to Supported Employment or Day programming and In-Home/Community supports. Families of now adult children tell us they were in many ways unprepared for the drastic changes that came, essentially overnight, when their young adult family member reached the age of 21. In past years, the structure of the agency required that an individual’s supports be transferred over to another department. Now, the same team that is familiar with the family can continue to provide supports, earlier and more intensively, through what can be a difficult and confusing experience. In addition, the team will be there for the other transitions everyone experiences in life such as: new jobs, new relationships, grief and loss, change of living situation, etc.

• To promote more opportunities for cross division/department collaboration.

• To strengthen a Leadership team that will seek and grab opportunities to develop additional innovating programming.

Give us your feedback about the restructuring and how we can serve you better!