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Millersville University Goes A Step Above With Disability Awareness and Acceptance

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Millersville University and The Ware Center in downtown Lancaster, which is also a part of the University, have gone above and beyond in our community trying to not only raise awareness about the needs of individuals that are differently abled, but also acceptance of them by presuming competence of their abilities.

Recently, I got the privilege of taking part of two film viewings and a show at the different theaters Millersville has on both their campus and downtown in our community. Each of the productions highlighted different areas of challenges and stories from the perspective of those that are Autistic, hearing-impaired, and are experiencing life-long disabilities and facing the age old question–what happens if a parent is no longer able to care for their loved one with a disability?

Deej

Panel Members and Director Deej Screening

My first experience happened a few weeks ago, when I had the privilege of attending a screening and participating in a panel for the film “Deej” — the story of a young man diagnosed on the autism spectrum who also happens to be non-verbal and also happens to be the first person to graduate from Oberlin University, a top US University, while being a non-verbal autistic individual.

 

As I mentioned during my panel discussion, I don’t want to ruin this film or any subsequent topics I bring up in the blog below by giving you all the talking points from the film, but I will suggest highly that you do view it.  While, yes, there are some points that were brought up during our discussions that bear some debate, overall the film was a beautiful example of what can happen positively in the life of an individual if a community bands together to be TRULY inclusive and doesn’t limit the paths that person can use to reach their full potential. Some controversy exists about the ability to duplicate the effects of what happened in Deej’s life, but perhaps it is because I can also view this through the hopeful eyes of a parent that will never give up on a child I love, that I can see the merit in looking beyond studies and doing what works for a child–as an individual.  The reality is that regardless of whether the featured therapeutic approach in the film–facilitated communication–is or is not an effective method for the vast majority of individuals on the autism spectrum, that in the case of this specific young man it was effective and allowed him to not only attend, but also graduate from one of our nation’s most prestigious institutions.

 

Definitely check out the trailer and the website for the film “Deej” and contact the Director about possible showings or get your own copy of the film to witness this incredible young man’s journey.

Butterfly

My next experience happened just a few days later when I got to experience the very last showing ever of the play “Butterfly”.  Created by internationally acclaimed Deaf storyteller Ramesh Meyyappan, it was a striking adaptation of Madame Butterfly, exploring themes of love, disappointment, loss and hope.

Butterfly

 

This modern multi-disciplinary piece used visually poetic narrative and movement, and beautiful, handcrafted puppets to tell the tale of Butterfly, a female kitemaker, whose life has been shattered following the departure of her lover, who left her alone, isolated and traumatized. The viewer got to follow this beautiful, complex character as she decides to conjure a happier life for herself in her head, but as she flits deeper into her imaginary world, her tale takes another tragic turn.

 

Prior to one of the showings of this very last viewing of this amazing production, the audience was treated to a free 20 minute Audience Perspective Lecture given by deaf poet Dr. Meg Day of F&M College.

Mimi and Donna

Finally and in collaboration with the Elks Nurses and Special Kids Network, I was able to reunite with my long-time friend and fellow advocate, Kay Lipsitz, former Director of Parent Education Network, for a viewing of a film that made me necessarily uncomfortable and emotional for all the right reasons.  It was a film that explored the often feared topic of “what happens if I am no longer able to care for my loved one with a severe disability?”

 

Mimi and Donna screening

 

“Mimi and Donna” is the story of a mother who is 92 at the start of the film who is still caring for her elder daughter, aged 64, who has a diagnoses of intellectual disability among others.  The Director of the documentary is the granddaughter and niece respectively of the title characters who during the course of filming discovers that her own son also has a diagnosis of Autism.

 

 

I haven’t had such a big cry in a long time but it was totally a film that I recommend emphatically and whole-heartedly for anyone that does have a loved one that they know they will care for, for a long time and if you’ve ever uttered the words “I can’t never die.”

 

Sugey Cruz-Everts and Kay LipsitzDeej Director and Audience MembersButterfly actors

 

 

 

 

 

 

 

 

 

 

I want to take this time to personally commend a few people in our community who are really going that extra mile to create an inclusive community and to provide opportunities to educate anyone who has ears to hear and a heart open for change and growth.  Thank you to Millersville University for taking positive strides to establish itself as a leader in acceptance for the differently abled and their families in Lancaster County. Your efforts in just two weeks time were immense and very telling of your commitment to your mission.

 

Additionally, I want to thank Barry Kornhauser and Kay Lipsitz, two individuals that continuously strive to inform others about the needs of those that are often misunderstood, under-appreciated and undervalued but who are competent, loving, artistic, and in many ways more able that many around them give them credit for.

 

Please consider attending events put on by the Ware Center when you get a chance and certainly take advantage of their Sensory Friendly performances. You will not only not regret the decision–you may find that the experience changes your perspective and life for the better.

 

The next sensory friendly performance will take place on Saturday, Oct. 28th, 2017 at the Ware Center in Downtown Lancaster. For tickets go to their box office.  Should you have questions about the performance or should you want a social story for it, please email Barry directly.  The Tommy Foundation will be providing a sensory hour prior to the performance to help those that need it get some sensory breaks and input before the show.

 

Hope to see you there supporting the arts and our growing, inclusive community!

Meraki Mocha –Inclusivity, Diversity, And A Thriving Wage Goals For The Differently Abled In Lancaster County

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A little over a week ago I had the opportunity to hear about a variety of great ideas for our County and ways we can help these ideas thrive and come to fruition at a Crowdfunding event put on by ASSETS, a diverse group of entrepreneurs and business leaders who are helping our county with social change and economic development.

Pictured James Stafford, founder of Sage & Shield and The Tommy Foundation’s President, Sugey Cruz-Everts at the Assets “The Great Social Enterprise Pitch”.

Pictured Founder Mark Wieder and some of his team at Popped Culture.

We learned about everything from using a Popcorn Academy and Business to help teach entrepreneur skills to at risk teens who are paired with College mentors (Popped Culture) to a membership-based, flat-fee cleaning business started by a veteran that wants to help people earn a living wage (Sage & Shield) and many more.

Today, I wanted to highlight a specific one that is near and dear to my heart because it directly addresses one of the many issues faced by the families and individuals we serve–that of working in an diverse and inclusive environment while earning a thriving wage. I speak of course of the awesome idea for our community brought forth by Sierra Wood and her dream business Meraki Mocha.

Meraki Mocha exists to empower people with intellectual and developmental disabilities by offering meaningful employment at a thriving wage, while working in an inclusive environment. They partner with local and environmentally sustainable suppliers to provide fresh and affordable products. Their mission is to be a catalyst to inspire other businesses to hire more people with Intellectual Disability.

Sierra is currently pursuing her Masters in Social Work and Masters in Nonprofit Leadership at the University of Pennsylvania with a focus on social enterprises and global affairs. She has many years of experience in the food industry, 5 years experience working with people who have intellectual and developmental disabilities, and has a passion to see Lancaster embrace diversity through inclusivity.

 

The dream for Meraki Mocha began five years ago. A woman Sierra knows has down syndrome and showed her a $3 paycheck compensating 70 hours of work. This equates to roughly 4 cents/hour. It was frustrating to see someone so capable and talented, who wanted to work, being taken advantage of at her job. Meraki Mocha is a means to address this problem in a very practical way.

Pictured Sierra Wood and friend alongside TTF Founder and President, Sugey Cruz-Everts at Asset’s “The Great Social Enterprise Pitch” Event.

 

The eventual goal for Sierra and Meraki Mocha is to open a cafe here in Lancaster. You can help this incredible team make this dream a reality and thus also show our County that a thriving wage for those with Intellectual Disability is not only possible but worth doing.

You can help by supporting their crowdfunding campaign and following them on Facebook.

Help us share this wonderful and worthwhile idea in our community! Best of luck to Sierra and the team already working with her.

Autism Film and Advocacy in the Community

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Join the Lancaster Autism Community for a panel discussion and viewing of the film “Deej” this Wednesday, September 13th, 2017 at the Ware Center in Downtown Lancaster.

DEEJ is the story of DJ Savarese (“Deej”), a gifted, young writer and an advocate for nonspeaking autistics. As a child, he was trapped in a silent world, abused in foster care, and written off. Now, as a high school student dreaming of college, he confronts the terrors of his past, stubborn obstacles to inclusion, and the often paralyzing beauty of his own senses. As an advocate for others like him, he embraces filmmaking and poetry and discovers what having a voice can truly mean.

You can get tickets for this important event from the Ware Center’s Ticket office or by emailing Barry at Barry.Kornhauser@millersville.edu.

The Tommy Foundation’s President and Co-Founder, Sugey Cruz-Everts, will be one of the panelists at the pre-screening.

We hope to see you there and we highly recommend bringing whoever you consider part of your “support team” with you to the event as the film is definitely informative and thought-provoking.

Pequea Valley Senior’s Fight For Autism

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“Autism can’t define me. I define Autism.” ~ Kerry Magro

This week I had the immense pleasure of being introduced to a young man with Autism, Everett Kasian, a senior at Pequea Valley School District and two wonderful ladies who have played a major part in his accomplishments–Cathy Koenig, Director of Student Service and Special Education and Lauren Lefever, Speech and Language Pathologist.

Pequea Valley School District has often gone above and beyond each year to support The Tommy Foundation during Autism Awareness Month (April for those unfamiliar with the International Campaign and Efforts). This year, however, there was a big twist–one of their seniors had designed a t-shirt and video to help raise awareness and funds and help others have a better understanding about who he is and about Autism.

I traveled with my Assistant, Alex, to Pequea Valley then this week and got to meet the amazing team that helped this young man get to the point where he not only self-advocates and teaches others about his condition but that also helped him to the point where he is now going to be matriculating at the University of the Arts in Philadelphia to study the Music Business.

You can read more about those pursuits in the current issue of the Pequea Valley Pennysaver.

As to Everett’s specific efforts for Autism Awareness month and to help his local community get a better understanding about the condition, he made a video about what it means to live with Autism–from his perspective.

From the video sprang the idea to expand on his efforts and working with Mrs. Lefever, his Speech and Language Pathologist, he came up with a t-shirt design that include the words “Fight For Autism”. His efforts successfully raised over $800 for The Tommy Foundation locally and they sold out of the shirts! This is why I am not wearing one below, though I am hoping more are coming and I can get a hold of one as well.

 

Everett is funny, personable, creative and warm–we even exchanged a hug when we parted ways–with his permission of course. I enjoyed getting even a snapshot of his journey and seeing what the next steps are for him. He’s already gotten word that he has a $14,000 scholarship towards College next year but that’s not quite sufficient for the school he’s going to attend. Our hope is to definitely get the word out there about this inspiring young man and have others support his efforts so he can continue to persevere and achieve all his goals. He definitely already has the drive and determination for it.

As for Mrs. Koenig, she shared her perspective with us about why she does what she does and what she hopes to achieve in the District:

“I want to be a part of our students and families journey in life. That does not begin or end at the bell of school. With the support of our amazing teachers we have been able to work with families outside of school to help them find support or to offer educational and fun nights for families. We did a game night, paint night, and siblings night. We try to ask the parents how we can support them and find the right people to support us. Every child counts and trying to help give families the confident to be their child’s advocate is important in school so that when they don’t have their school team they can still be the voice to fight for what is best.” Kathy Koenig, Director of Student Service and Special Education.

With all the things we often hear about what’s wrong with having people truly understand why Autism Awareness is still important and why having a functioning relationship between the school team and parents and the individual that hopefully learns to advocate for themselves as well, it’s truly humbling to get to meet a team of people that gets it.

To us, the team is always the individual who has the Autism Diagnosis, the parents or caregivers, the education and support team, and anyone and everyone in the community that chooses to be a voice for positive change and understanding.

Congratulations Everett on all your accomplishments and for reminding us about why we fight on!

“Be Their Guest” Disney Trip Perspectives from Several Autism Parents

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It’s one of those things that is a dream for every parent–a check mark that most of us feel like we need to have at some point–that Trip to Disney with your child. A few years ago, we almost reluctantly made our own trip with our then 11 year old son mostly because 1) we stopped thinking that somehow it was going to eventually get easier as he got older and 2) we were already planning to be in Florida for the wedding of a dear friend who asked that our son be there since she used to work with him.

So, we mustered our strength and did the trip with accommodations so that we could do that big check mark off our parent list.

One of the things we wished we had realized sooner rather than later was that we should have gone when our son was younger. That his anxiety at being around that many people was really pronounced as he was getting closer to puberty and that perhaps a few trips in youth might have really made this the magical journey we were always told it would be.

Alas, we still made the best of it but in this blog post, I wanted to invite two other perspectives so that if you too have been thinking of making that magical journey with your family you know what to do and can make the best of it.

Like us, one of these families was originally waiting for “the right time” to go and we discussed it and I’m glad they finally did go and had the time of their lives.

 

First Time To Disney: A Short and Sweet Tale of Making the Dream Come True

The Sneed Family 

Going to Disneyworld was a first for my entire family. Prior to the trip, my husband and I thought it would be extremely difficult to take our son Quacey. As with any kiddo on the Spectrum, change is impossible so we needed to be well organized.

For many reasons, we decided to opt out of taking an airplane and thought it would be best to make it an Ol’ Family Roadtrip from Lancaster to Orlando!

 

Once we arrived inside the park, we immediately headed over to Guest Relations. They were extremely helpful and familiar in servicing children with Autism. That made me so comfortable!

At that point, we were given a complimentary double stroller & Disability Pass that allowed Quacey (and family) to cut down on the wait times of rides as well as experience the “Magic” without the fear of the long lines, crowds, etc. If your child experiences sensory related issues like my son, the quiet zone would be a plus. We were able to wait in a much quieter area until we were ready to ride. With all these wonderful amenities, Disneyworld makes everyone feel EQUAL. With the support of The Tommy Foundation, Quacey could see Mickey at the age of 7. Because of our TTF family, my family and I got to enjoy this magical experience at Disney, together!

Thank you TTF for Everything! – The Sneed Family

 

A Longer Tale From A Disney Family Expert 

The Magee Family

We traveled to Disney for the first time in January 2011 to celebrate my birthday. Our son Liam was only 18 months at the time and had not been diagnosed yet with Autism. He was at the time and still is non-verbal.

Our trip to Florida was just to get away from the PA winter. We were trying to travel to Miami or Ft. Lauderdale and found that Orlando had more family friendly resorts. We never thought our first trip to Disney would turn us into Disney Fanatics.

The first thing to do when planning a Disney vacation is figuring out the best time of year to go. You can google “When is it the best time to go to Disney World” and you will find calendars that list every day of the year and the crowd sizes. This will help greatly, when you plan your trip. It is very hot and humid in the summer time starting in June, so be aware of that fact too. Since that original trip we have been to Disney six more time and just did a day trip to Disneyland while we were visiting our oldest son in California last month.

It has turned to our go-to family vacation. We have gone as a family of three all the way up to a family of six, which included our older children and Grandparents. We have always rented a car and stayed off the Disney property at an area timeshare or condo unit. There are tons of these properties that are only a few miles from the various Disney parks. We have rented via Southwest Airlines Vacation, Costco Travel and Air BnB. There are two reason why we do this: one is that it is much cheaper than staying on Disney property and the other is the large amount of living space that we love to have on vacation. These resorts have big pools, restaurants, and children activities just like at Disney Resorts.

We like having multiple bedrooms, bathrooms, and kitchen areas. We like Liam having his own bed/bedroom to sleep in so that he can go to sleep at a decent time. Then us parents can stay up late and not disturb him. Having a condo also allows for more space for Liam to play in, when we are not spending time at the Parks. We always pack his trains, balls, and other beloved toys, so he can play during down times. Liam is very particular about what he eats. Having a fully function kitchen allow us to have all of the foods that Liam likes to eat. It also saves money for eating all of your meals out. We always pack a lunch, drinks and snacks for Liam to take with us into the park.

It just makes it easier to know that he is content with all of his favorite foods. Disney allows you to bring drinks and foods into the parks. They check all bags, but we have never had any problems at all. We also pack frozen bottles of waters during hot months. I just hate paying $3.00 or $4.00 for a bottle of water, when you can by a case for a few dollars more. Snacks also help with waiting in lines for shows and to go on rides.

Disney offers a Disability Pass to help you get on rides faster. If you are familiar with the Disney Fast Pass system, it is like having an additional Fast Pass. You can pick one of these passes up at any Guest Services Desk at any Disney Park. It allows to either to enter the Fast Pass line and wait a few minutes or sometimes it allows you to go and get on at the end of the ride. It just depends on the ride. We always use it for the most popular rides, because sometimes the normal Fast Pass for those rides will be booked. This is the first thing that we do, when we arrive at the Parks. It only takes a few minutes. I just let them know that Liam has Autism and then they take his picture and set him up with the pass. You do not need any written documentation about your child’s condition. The pass lasts for the length of your stay. When you use this disability pass the child must be on the ride with you. It also allows up to six people to go on the ride including the person with the disability pass.

There is a Disney World App that you can add to your phone. We use that a lot to look at wait times for rides, shows, and character meet and greets. It also helps to keep track of your Fast Pass times. It is a great tool to use.

On a side note, both Dutch Wonderland and Hershey Park have disability passes. Just ask about getting them as soon as you enter the park. It also never hurts to tell a Cast Member, another name for a Disney employee, that your child has Autism and the special pass. They will sometimes let you get right on a ride or do a meet and great and not wait in a big line. It seems like it is up to the personality of a Cast Member.

When we were at Disney at Christmas time in 2015, the Cast Member could tell I was having some issues with Liam as we were waiting in line to get our picture taken with Santa Claus. She let us walk right in front of everyone in line and we were the next family to get our picture taken. She explained to Santa our situation and Santa spent so much time with Liam, even though Liam doesn’t talk. It was a great experience and I will always remember what that Cast Member did for us. We probably have 20 pictures of Liam with Santa. Just “talking” to him, Liam touching his beard, and just hanging with him. It was truly a magical experience.

I was concerned about taking Liam to the Parks on our first visit, because in my mind you never know when he may have a bad moment or day. The way we deal with this is working around his schedule. If we know we have had a couple of busy days in a row, then I make sure that we have a pool day to break it up. If we know that we are going to stay late in the Park for a parade or fireworks, then we will get to the Park later in the day and enjoy the pool in the morning. Planning out your day in advance is a lifesaver.

If we know Liam needs a break and needs to just relax, then we stop and don’t push him. This may be sometime on the IPad or we usually buy an ice cream snack and that always puts him in a great mood. I think you have to let your child be your guide.

Liam is full of energy, we are usually the ones that get tired before him ☺. As I have said earlier, our older children and Grandparents have all traveled with us to Disney World. When Liam’s older siblings, who are now 22 and 19, have traveled with us, we always make sure everyone got on the rides that they really loved. So if that meant splitting up in order to do so, then we would do that. I don’t like roller-coaster or scary rides, so I would go on the smaller rides with Liam and my husband would do the more adventurous rides with our older children.

If your children are older and can be on their own, then we would let them go and give them a time to meet back with us. You can always keep in constant contact on your cell phones. When we have just Liam with us, then it is all about him and the rides and shows that he loves to do. We have done some of the various restaurants that Disney has to offer. We only go to places that we think Liam will eat from the children’s menu, since he can be picky about his food.

We love the Winnie the Pooh Breakfast Character Meal at the Crystal Palace in Magic Kingdom. Liam really loves the Pooh characters. So we try to make sure we visit them, since he actually recognizes them. When Liam saw Pooh and Tigger on our last trip, we actually waited in line for about 40 minutes at a normal meet and greet. We were there during the Thanksgiving time period so the Parks are much more crowded. Liam hung on with his snacks and playing some games with us as we waited in line. When it was his time to go up, I always like the photographer and the characters know that Liam has Autism and it may take him a little bit of time for him to look at the camera and warm up. Pooh and Tigger were so great with him and spent a nice amount of time with him. He was jumping up and down just like Tigger with a huge small on his face. I swear it was the best pictures we ever had of him and we didn’t have to even work hard to get them. Liam was simply in heaven.

 

 

If your child loves any particular Disney character, then those would be the ones that I would make sure I visit. These lines can be long, so don’t waste your time if your child may not be into certain characters.

From when we started to take Liam to Disney at 18 months to now, he definitely recognizes the Parks as soon as we arrive. He just starts jumping up and down and wants to run right in. Liam will be 8 in May and is quite tall for his age, so he can get on most rides now.

During our last two trips, we have taken him on more “non-kid rides” and he has done great on them. His adventurous side opens up so many more opportunities for us to go on more rides. We have discovered that he loves 3D rides and shows and wearing the special glasses. Liam loves the fireworks shows, but the noise still bothers him. So now we bring headphones for him to help with the loud noises.

As I said, let your child be the guide for your Disney Vacation. Disney World has turned into a true blessing for our family. It has become very familiar for Liam and we know he recognizes the Parks as soon as we enter. It is our home away from home.

Even though he cannot talk, I know Liam would say “I Love Disney”!!!!

 

 

Aren’t You the lady that came here dressed as…

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“Lighten up, just enjoy life, smile more, laugh more, and don’t get so worked up about things.” – Kenneth Branagh

Okay so that last bit is hard, I’ll admit. I get worked up quite a bit because well that’s my temperament and life in general especially when you have loved ones you care for with more challenging needs.

That being said, I definitely full on embrace the idea of lightening up, enjoying life, and smiling and laughing more.

So funny story that totally put my life into perspective and just how I’ve “coped” with being surrounded by constant stress.

I go to my local supermarket one day, just buying a bunch of stuff for yet another event I have with kiddos and their families for The Tommy Foundation, and all of a sudden I notice that my cashier can’t stop staring at me.

Me: “Is something wrong?”

Cashier 1: “Um, sorry I was just… um, aren’t you the lady that came in here once dressed as Hermoine from Harry Potter?”

Before I can answer…

Bagger: “No, no, she came in here dressed as Katniss”

Cashier 2 (next aisle over): “No, she was a minion!”

Me: “Okay, I’m going to save you all some time—they were ALL me.”

Confusion and stifled laughter…

Me: “I work with kids and adults that honestly can use a little joy in their life, so I feel that the more free and ridiculous I allow myself to be, the more freedom I give people to let go and not take things so seriously and maybe even embrace some childlike part of themselves.”

 

My words could very well have gone over the heads of the 3 “kids” helping me that day with my groceries. The oldest couldn’t have been over 20 and the concept of an older woman dressing up all the time and GASP! Not caring enough about what other’s thought of her probably left them reeling.

So why do I dress up?

Good question. In looking back at the 11 years since I’ve founded the non-profit I spend so much blood, sweat and tears on, I can recall times when I was more “professional” and blended in just a wee bit more to the community that has now been my home for over 20 years. It IS Amish country after all, I could do a better job blending in, I suppose.

Well first off, I like it. Yes, I’ll be honest, there is still a huge part of me that wants to play pretend and have fun and truly feels alive when I read books and watch films and then can somehow bring them to life. I wanted to be an actress in a former life, so there’s that too.

Two, it genuinely puts a smile on the faces of kids I work with to see me not only excited to see them and welcoming, but also being completely up to making an utter fool of myself for their amusement.

Three, it’s okay to take something that upsets you or that confuses you or that isn’t always happy and make the best of it.

There are days I don’t want to work.

There are days I don’t want to be “on”.

There are days I just want to stay in, cry and heck maybe even drink wine.

There are plenty of statistics and stories and even support pages and groups and social media updates that would condone me doing any of the things I already listed.

Studies Show…

One research study in The Journal of Autism and Developmental Disorders noted that moms of kids with autism have PTSD that is so high that it is similar to that of soldiers in active combat!

Excerpt from the New York Times on the study, states that:

“Researchers from the University of Wisconsin at Madison followed a group of mothers and their autistic children (adolescents and adults) for eight days. They were interviewed at the end of each day, and saliva samples were taken every four days.”

Among the findings:

  • The levels of chronic stress experienced by the mothers were similar to those of combat soldiers. The greater the child’s behavior problems, the worse the mothers’ stress.
  • Mothers of those with autism reportedly spend at least two hours more each day caring for those children than a comparative group of mothers whose children were not autistic.
  • The mothers of the autistic children were interrupted at work an average of once every four days. For the other mothers, the frequency was fewer than one interruption every 10 days.
  • The autism mothers were three times as likely to report a stressful event on any given day, and twice as likely to be tired.

There is probably at least a study a day that comes out with some reason why 1) we are to blame in some way for why our loved one has autism or 2) we should totally be miserable.

What’s the point lady?

The point I am trying to make is that life is too short to waste finding reasons to stay miserable.

I get it! I’ve read the studies.

I get it! I’ve been to the meetings and conferences and so on… our lives are crazy and some days we don’t want to adult. It’s hard.

 

You don’t have to dress up and act silly but find whatever version of your passion it is you have inside you—whatever part of self-expression you’ve lost throughout your years and bring it back into your work, your life and your children.

 Don’t Let Anyone Dull Your Sparkle!

 

Unexpected Uses of Snapchat with the “Differently Abled” – or anyone you want to actually connect with.

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How many times growing up did you hate it when an adult told you the phrase “these kids these days?” If you are like me you HATED it!
Well a few decades and my own child, quite a few nieces and nephews, cousins and friends’ kids later, and I find myself expressing or thinking the exact same thing.

Our kids have literally no attention span—or so it seems. If we are honest about it, neither do we, but that’s a story for another day, I think.

Technology has been an amazing advancement but at the same time it has made it so difficult for our kids to focus or stay on task.

That’s not my tale though for today!

Surprisingly, I’ve found an incredibly useful function of one social media technology tool in particular—Snapchat.

For those that know me, I am the mom of an older child with learning differences and I co-founded and am President of a non-profit for Autism, The Tommy Foundation, for individuals with Autism and Related Conditions.

Well in my world, ability to stay focused is usually an issue for sure and many times there are so many distractions in the environment that can set off our loved ones.

We can feel bombarded by noises, smells, sounds, visual input and so forth that can make seemingly simple or even fun activities—like say bowling- a real chore.

ENTER SNAPCHAT!!!!

In the last year or so of my daily life and my work with kids, I’ve found that a little snapchat sprinkled in to the lives of the kids—and even their parents—really goes A LONG WAY.

1. Work Story

When I see a child approaching anxiety or frustration mode, rather than assume the worst, I take a deep breath and offer up my phone and some filters so that the child can refocus on something else for a bit.

The results are incredible. 9 times out of 10, if you catch it before it turns into a meltdown, the child or individual will completely forget why they were starting to get upset and will want to take picture after picture.

How is this useful?

Well, when you are in a public place where you need to take turns, all of a sudden you now have a tool that allows your child to actually relax and wait without resorting to having to yell at them or be physically restrictive with them—which can cause some embarrassment that might make an experience that was supposed to be fun, much less so.

 

 

2. Personal Story

Over the weekend, my husband and I worked with a dear friend on a new communication system for our son. Our friend, Julie, has known our son and worked on and off with him with a variety of therapies throughout the years.

This time though we were learning something that allows us to have our son find a new way to open up with us and let us understand more about what he’s actually taken in all these years.

The specifics of that are something for another day, but for now, I will say that the process of learning how to “letterboard” – using alphabet boards to point and communicate with us is something that can be rewarding and super frustrating for everyone involved.

It will take years and a lot of commitment for him to become “fluent” but it’s a task we are more than willing to take on and which requires a lot of us and our boy.

BRING IT ON!

In the meantime though, the moments of frustration and stress can really be killers to the mood needed to move on and really push through to help him be successful in communicating and for us to be successful as his voice.

Again, Enter Snapchat – a non-food based motivation that won’t make you create bad eating habits (common complaint among parents and caretakers of other motivators used) that can help someone stay focused and on task or which can be offered as a reward.

Our goal each day is to make it through two, 20-25 minute, session on a lesson we do. Well today that 20-25 minutes took over an hour and half because of his body not wanting to cooperate and his frustration.

At the end though we were still buds and he was happy with me, cause we did some snap-chatting and it helped us push through and end the lesson on a great note.

A few silly videos and pics later and my boy forgot all about his frustration. He rocked his lesson in the end and we spent just as much time having fun as we did practicing something that made him work harder than he ever has before.

So stinking proud of my kid. He’s truly a rockstar!

 

 

 

 

3. Make it About Bonding

I live in the world of the “differently abled”.

It’s something I was thrust into as a mom and then choose voluntarily as a co-founder of a non-profit that deals with the issue.

I am full in, I was drafted and I accepted fully.

Now, it doesn’t ALWAYS have to be hard. You are allowed to have fun. You are allowed to make things playful and enjoyable and silly.

So many of our social media tools can be isolating—despite their intent to bring us together. One of the values I’ve found with any child really, but especially with ones that are more visual thinkers, is to have a tool that allows you to use filters and sounds to help you express ourselves, to see ourselves in a different light, and share a moment with a loved one.

Some of my favorite bonding moments lately have involved this tool.

I’m not at all embarrassed to use it as a tool to help me bond with these kids that I love and I want to connect with.

For me, it’s all about connecting with them at a human level and modeling love, joy and togetherness.

What about you?
What tools do you use to connect and create joy with your loved ones?

Sound off in the comments and to update a “classic” from when my kiddo was a Disney-channel-holic in the past from “Kim Possible” : “email, snap me, if you want to reach me, if you want to facebook me it’s okay. Whenever you need me baby, email, snap me if you want to reach me.”
My Snap and Instagram Name is: Miss Sugey

Join Us To Rediscover The “Forgotten”

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JOIN THE TOMMY FOUNDATION AND JONI AND FRIENDS FOR A GLIMPSE INTO THE WORLD OF DISABILITY ON SATURDAY, OCT. 15TH, 2016.

“Bring in the poor, the crippled, the blind, the lame…and compel them to come in so that my house will be full.” ~ Luke 14.

The quote above is one that the organization Joni and Friends of Eastern Pennsylvania wants to help our community observe while interacting with their new exhibit entitled “Finding The Forgotten”. This exhibit offers the viewer a glimpse into the world of different kinds of disabilities–including Autism–through a 30 minute multi-sensory experience.

I had the opportunity to experience this exhibit before its grand-opening to the public and was so impressed and touched by what I experienced that I instantly set up a time so that families and community members we serve can join me in experiencing it together. The opportunity to get this glimpse into the world of various disabilities via stories from individuals themselves and their families and guided meditation will benefit anyone that wants to get a deeper understanding and appreciation of the world of the differently abled and their families and reflect on ways that we can work together and to form a deeper connection with one another.

If you are interested in attending our Tommy Foundation day together at the exhibit, which is Saturday, Oct. 15th from 10am-1pm, please sign up via this link:

Finding The Forgotten Sign-Up

We are allowed to have a maximum of 30 people going through the exhibit at a time and it takes approximately 30 minutes to go through the exhibit. At this point I am collecting the names of those interested in attending first and we can assign specific times later if we have a lot of interest.

You can see more about the exhibit at www.findingtheforgotten.org.

Magic Display and Superhero Appearance At February’s Support Meeting

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On Monday, February 16th, 2015, The Tommy Foundation hosted Dave and Angela Kot, creators of Face Value Comics and founders of Autism at Face Value, a non-profit that uses facial feature recognition to reinforce emotional expression. The organizations mission states: “We believe all children have the right to feel safe, wanted, and successful in their homes, schools, and communities. Understanding their own and others’ emotions boosts confidences needed for improved social behaviors. FVC reinforces these beliefs by telling a social story using a comic book for children.”

Dave Kot, who is on the Autism Spectrum himself, was there to perform for a magic show for our families who were in attendance at our monthly support group. The kids were in awe and many were chosen to participate as assistants in some of the magic tricks. After the show, the Zephyr, the world’s first autistic comic hero, was in attendance to pose for pictures with the kids.

Dave gave families a bit more insight into their comic books as well and had copies of both the first and second issue. In the comics, children see characters’ faces drawn on the page to learn about a universal emotion. Speech bubbles give language and vocabulary to match the expressed feelings. Captions and the story help place the emotion in context. Then, we weave an interesting science fiction story appropriate for middle-school aged children and their families. This work literally changes the FACE of Autism. We believe heroes do the right thing because of who they are, not because they have any unique powers. We believe people’s ABILITIES, not (dis)abilities, make them heroes!

To order comics direct, Email: Angie@facevalue.us or wherever comics are sold. Digital copies can be found here.

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Infinitely Awesome Sponsors Three Years In A Row To Get Special Recognition

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“We Rise By Lifting Others” ~ Robert Ingresol

New Story (Salisbury Behavioral Health), PerformCare and Murry Communities will be recognized at this year’s Edge of Autism Walk & Festival, to be held at Buchanan Park on April 25th, 2015, for their outstanding contributions to the community over the last three years having donated at the “Infinitely Awesome” level or above during that time. It takes a lot to build programs and to have the capitol to make those programs run and flourish so it is extremely humbling to have three groups that so believe in the work you do that they support your efforts at the top levels for three years or more in a row.

New Story  Since New Story’s inception in 1997, their team of highly-skilled educators and therapists has been working with children and their families to provide personalized education and support to help them overcome challenges and achieve success. Each staff member and student has the opportunity to create individual new stories. Collectively, they create a much larger “New Story.” With many schools and service programs throughout Pennsylvania, they are continuing to expand offerings and locations to meet the growing needs of children and their families.

PerformCare-LogoPerformCare was founded in 1994 by a group of leading behavioral health organizations, including providers and related associations. They are a full-service managed behavioral health care organization that supports members and providers and offer specialized behavioral health and human services programs in both the public and private sectors. Originally known as the Community Behavioral HealthCare Network of Pennsylvania (CBHNP), PerformCare became a member of the AmeriHealth Caritas family of companies in 2008. Together with AmeriHealth Caritas, they are proud to be leaders in Medicaid managed care and behavioral health care. Today, they remain committed to a “mission-driven philosophy of care – providing quality, reliable, and cost-effective behavioral health management services to members across the Commonwealth.”

Murry Living WorkingspacesFinally, Murry Communities is one that on paper looks like there is less of an immediate connection to the ‘autism cause’ as their would be for the other two leaders herein presented given that Murry Communities largely deals with comprehensive real estate property management services. However, the real reason for the collaboration of this wonderful organization with the community comes in the form of a giving and generous spirit behind the scenes, Susan Murry, who as a mother herself who at times has had a difficult road understands the needs of our families and just wants to help anyway that she can.

We are so excited to share these wonderful groups and individuals with you and can’t wait to have them say a few words and receive the recognition they so rightly deserve at our ‘family reunion’ (The Edge of Autism Walk & Festival) this April.

Don’t forget that to register for the Walk, create a team or donate to a team that already exists you can visit http://www.edgeofautism.com.