What ‘Finding Dory’ Taught Me as Someone on the Autism Spectrum

Check out Erin Clemen’s blog post over at The Mighty website:  What ‘Finding Dory’ Taught Me as Someone on the Autism Spectrum.

Natural Resilience May Not Be As Common As Once Thought

When someone goes through a rough period, say a divorce or losing a job, the common thought has been that this is a test of the person’s ability to bounce back — and most psychological studies have supported the idea of a person’s innate resilience to the struggles of life.

The common mantra has been “Give the person time to heal,” meaning that those who struggled were oftentimes left to deal with their situation on their own.

But now, new research from Arizona State University finds that natural resilience may not be as common as once thought and that when confronted with a major life-altering event, many people can struggle considerably and for longer periods of time.

November is National Family Caregivers Month

National Family Caregivers Month 2015

This year’s theme is “Respite: Care for Caregivers“.

R     is for “Rest and Relaxation”
E     as in “Energize”
S     as in “Sleep”
P     is for “Programs that can help you”
I     as in “Imagination”
T     as in “Take Five”
E     is for “Exhale”

Read more: http://nfca.typepad.com/nfc_month_2015/

Tipping the Scales: The Resilience Game


Check out the Center on the Developing Child’s multimedia game: Tipping the Scales: The Resilience Game

In this game, you learn how the choices we make can help children and the community as a whole become more resilient in the face of serious challenges. Negative events can occur at any time, and it’s your job to choose positive events to counteract these negatives.

The Center on the Developing Child at Harvard University was established in 2006. Their mission is to drive science-based innovation that achieves breakthrough outcomes for children facing adversity.

Cheerleader with Down Syndrome Stars in Finalist Video for GMA’s Katy Perry ‘Roar’ Contest


Arizona’s Verrado High School entry into the Good Morning America/Katy Perry Roar contest has gone viral, in part because of one special cheerleader. The instructions for the “Good Morning America” Katy Perry music video contest were simple: Students had to submit a music video for Perry’s song “Roar” featuring fellow students up to two minutes long by Oct. 1.

Perry will perform a concert at the winning school on Oct. 25, which also will be broadcast on “Good Morning America.”

The High School’s video tells the story of 18-year-old senior Megan Squire who was born with Down syndrome. Squire has been on the cheerleading team for four years and is now on the varsity squad. The video re-enacts Squire’s attempt to get on the team.

See the video on YouTube.

Autism and Our First Toothache

Amy Kelly is the Director of Family Supports and Services for Devereux Pennsylvania’s Community Services division. She recently shared a story about her daughter’s first toothache.

As any of you who have heard me speak about my daughter Annie in one of my family trainings knows, I often talk about the ‘silver linings’ of autism… my saying before the movie even came out this year! Since last April, Autism Awareness Month, once again our year has proven to be nothing short of small everyday miracles and plenty of challenges. Annie is now 11 years old, and her brothers Danny and Ryan are 12 and 9. Annie can now say “Rynan”, and waits for him every day after his 3rd grade school day to give him a hug and kiss. This is new since last year, and a very big deal. Also what is new is Annie’s ability and desire to express herself and communicate her feelings more effectively. She still must use her iPad since her speech approximations aren’t clear, but she now tells me when she is sad on her iPad, or when she will “C-R-Y” as she puts it in her spelling attempts at speech. She even saw Mr. Kreider at her school, Devereux CARES, and walked right up to him and spelled “M-O-M W-O-R-K”. Perhaps she thinks I’m the boss?? [Note: Mr. Kreider is Devereux’s CEO.]

Recently I had an amazing ‘silver lining’ experience with Annie. She and I were sitting on my couch and she had been complaining of a toothache in her bottom back tooth for a few days by pointing to it, using my hand and putting it on that part of her chin and saying “boo-boo”. Now I must preface this story in that little Miss Annie does NOT like the dentist, even though we have the most wonderful and patient pediatric dentist, Dr. Jeff. She had her first teeth-cleaning only two years ago when I had to have her sedated in a hospital because of her severe anxiety and fears of the dentist. We can’t even drive into the driveway to the dentist without her crying.

So… Annie and I were sitting together having a conversation on her iPad and she types into her iPad “dentist. Dr. Jeff”. Usually her messages say “NO dentist” or “NO Dr. Jeff”. I said “Annie, are you telling me you need a dentist? Does your tooth hurt?” She answered a “yeah”. I said “Do you want to go see Dr. Jeff tomorrow? Mama can call and take you to see him if you really have a tooth ache.” She again said “yeah”. I said “Ok Annie. I will call Dr. Jeff tomorrow and take you to see him. But you have to let him look at your sore tooth to make it feel better. Ok?” Annie answered “Ok” (That’s another new verbal response this year!)

The next day I quietly texted Annie’s teacher at school and asked her to ask Annie if her tooth hurt and if she said yes, to point to which one was bothering her. Sure enough Annie told her yes and pointed to the same tooth. I called Dr. Jeff’s office and they kindly squeezed Annie in, knowing they would need extra time. I picked Annie up from school and she was quite happy, knowing that we were going in Mama’s car. I ran through the scenario again with her to prepare her for what was to come: “Annie, we are going to go see Dr. Jeff for your sore tooth like you asked Mama yesterday. He needs to look at that sore tooth. That’s the only thing he has to look at – no teeth cleaning, nothing else, but you have to let him look at the sore tooth, ok?”. Annie answered “ok”. I had my doubts.

We drove to the dentist office and there was NO crying as we pulled in. I was surprised at how quiet and content she was. We got out of the car and she held my hand and walked in with me, with no real hesitation. I kept watching her for a reaction and there was none. They expected us at the office so took us right back. Annie preferred not to sit in the dentist patient chair, so she sat on the bench that I usually sit in. No big deal. I just couldn’t believe she was so calm and at ease. Dr. Jeff came in and her eyes widened a little bit…. I said “Annie, remember, Dr. Jeff needs to check your sore tooth. Can you show him your sore tooth?” She quickly opened her mouth and pointed to it, but then immediately shut it again. Dr. Jeff and I gently coaxed her into opening it for longer so he could get a better look at it since it was all the way in the back…me modeling “Ahhhhhh” with a big wide mouth open the whole time. Sure enough, Annie was getting her 12 year old molars and there was a small infection around her gums! Dr. Jeff said “Annie….you’re right! You do have a sore tooth, because you are getting new teeth back there. Great job telling Mom, and great job letting me look at them!” He asked for a hi-five and she proceeded to give him THREE hi-fives, she was so proud of herself. The dental hygienist then offered her the reward toy basket and Annie carefully picked what to me, seemed like the oddest thing out of it. She insisted that I open it right away. I did, and she put it on immediately….and wore it the whole way out of the office. Who knew I was raising such a comedian… and such a brave little girl.

Happy Autism Awareness Month!! — Amy and Annie


Statement Regarding Newtown, CT Tragedy

Like the rest of the nation, the Devereux family is heartbroken by the tragic and utterly senseless shooting in Newtown, CT last Friday.  It seems so feeble in the context of such trauma, but our thoughts and prayers are truly with the parents, the children, the school staff and the community.  We so wish that there was something, anything, we could do to comfort them.  In trying to think of something useful to say, something that would provide all of us with a positive way of responding, my thoughts went back to the core protective factors we advocate for in children:

Attachment/Relationships – nothing is more important to all of us, children and adults alike, at this time than knowing that others care for us and about us.  We all know of the need to provide assurance to the children, but let’s also express our compassion for the parents throughout our nation who may be anxious to send their children to school and the school staff who may feel overwhelmed by their responsibility for the children.

Self-Regulation– although we all feel sorrow, it is important not to be overwhelmed by our feelings.  We should all make an extra effort in the coming weeks to take care of ourselves through reflection, meditation, prayer, or the like. We need to acknowledge our feelings, but to stay focused on keeping ourselves together, and maintaining the normal rhythms and routines of life. This is especially important for our children – that they see that the adults that they depend on can acknowledge their feelings, but can cope effectively.

Initiative – Finally, we all have to ask ourselves what we can do as parents, teachers, and community members to make the world safer for children. And then we need to commit to action.

The staff at the Devereux Center for Resilient Children have devoted their careers to helping children build resilience so they can bounce back from adversity, but no child, no family, and no community should ever have to bounce back from events like those in Newtown.

Resources are available to help us best understand how to support children and one and other in these tragic situations.  Following are links to such resources:

Resources for Dealing with Traumatic Events in Schools from CSMH

National Association for School Psychologists

National Child Traumatic Stress Network

Disaster Distress Helpline Offers Immediate Crisis Counseling  Sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA), the Helpline immediately connects callers to trained and caring professionals from the closest crisis counseling center in the nationwide network of centers. Helpline staff will provide confidential counseling, referrals, and other needed support services. Call 1-800-985-5990 or text “TalkWithUs” to 66746.

Bring Your Life Into Balance Toolkit

Stress or mood swings rock everyone’s balance from time to time. However, when too much stress, anxiety, depression, or worry interfere with your health, career or personal relationships, it’s time to make a change. No matter how difficult things seem, by learning to harness overwhelming stress and gain emotional awareness, you can bring yourself into balance and have a more positive effect on those around you.  Don’t miss this free self-guided program for becoming a healthier, happier you from Helpguide.

Recap of Devereux’s First Annual Resiliency Conference

On October 13, Devereux had the privilege of hosting a conference, “Overcoming the Odds: Promoting Resilience for Families with Special Needs.” As a leading nonprofit behavioral healthcare organization, Devereux supports many of the most underserved and vulnerable members of our communities. As part of our 100th anniversary celebration, Devereux staff and community experts shared a wealth of knowledge about family resilience with the Philadelphia community.

Paul LeBuffe, Director of Devereux’s Center for Resilient Children reflects upon the day:

Working at Devereux, I see first-hand the myriad of challenges faced by families caring for someone with special needs. This conference provided an opportunity for these families to come together and meet with a wide-range of professionals who helped them navigate their care-giving journeys.

It truly was a day of caring as my colleagues and I were able to interact with these families and offer education and support through workshops focused on critical topics like advocacy, medication management, legal issues, and social and emotional needs.

What’s more, we were thrilled to have New York Times best-selling author Judith Warner deliver the keynote address, speaking about her work with families that care for a child with special needs. We also recognized Dr. Dan Gottlieb, host of Voices in the Family on WHYY, with our first annual Devereux Community of Caring Award.

I want to thank everyone who made this conference possible, and encourage everyone to join us in our mission of providing hope and empowering lives for another 100 years to come.

Conference Program

Overcoming the Odds: Promoting Resilience for Families with Special Needs


8:30          Registration and Continental Breakfast

9:20          Welcome – Bob Kreider, President and CEO, Devereux

9:30          Keynote Speaker – Judith Warner

10:15        Break

10:30       Workshops

A.  Aging Issues for Individuals with I/DD – Pauline Adongo, R.N.

B.   Promoting Family Resilience – Paul LeBuffe

C.   Legal Issues in Planning for Individuals with Special Needs  –
Ira Fingles, Esq. & Lori McLaughlin, Esq.

11:25        Town Hall – Open Forum – Facilitated by Amy Kelly & Paul LeBuffe

12:00       Luncheon (provided) and guest speakers – Youth Voices

1. Erin Clemens

2. Kyshon Johnson

1:10          The Family’s Search for Meaning: Life with a Special Needs Child – Kelly & LeBuffe

2:00         Break

2:15          Workshops

A. Family Advocacy Gets Results – Frank Cervone, Esq.

B. Faith – Lester Weaver

C. Psychotropic Medications in Children & Adolescents– Marilyn B. Benoit, M.D.

D. Meeting the Needs of Siblings of Special Needs– Karen Brenneman

3:10           Community of Hope Award Presentation to Dr. Dan Gottlieb

3:30           Building Your Bounce – Susan Damico

4:00           Reception