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
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.
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
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
1:10 The Family’s Search for Meaning: Life with a Special Needs Child – Kelly & LeBuffe
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
Overcoming the Odds: Promoting Resilience for Families with Special Needs
Saturday, October 13, 2012 9:00 a.m. – 3:30 p.m.
Rosemont School of the Holy Child
1344 Montgomery Avenue
Rosemont, PA 19010
Caring for a child, young adult, or parent with special needs?
Members of the community who are caring for a loved one with special needs are invited to this conference. You will have the opportunity to speak to professionals in a variety of fields regarding how best to support your loved one. Topic-specific workshops will also be offered as part of the day’s events.
This conference featuring Judith Warner, New York Times best-selling author of “We’ve Got Issues: Children and Parents in the Age of Medication“ is offered free of charge to the community in celebration of Devereux’s 100th Anniversary.
Breakfast and lunch will be provided. A free shuttle will be available from SEPTA’s Rosemont Station to the Conference for those taking public transportation.
We can help you with:
* appropriate school placement
* managing parents’ and siblings’ needs
* medication decisions
* planning for the future
* legal and other issues
Please join us for a day filled with helpful tips on how to build resilience when caring for a loved one with special needs.
Space is limited. Sign up today! To register, contact Kristin Schloendorn at 610-542-3094 or firstname.lastname@example.org
Supervised child care will be available on site. Please mention any child care needs, including special needs, when registering.
The Please Touch Museum will offer children’s activities.