Autism and Our First Toothache
Posted: April 5, 2013 Filed under: Inspirational | Tags: Autism, parenting, resiliency, special needs Leave a comment »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
Sexuality in People with Intellectual and Developmental Disabilities
Posted: December 7, 2012 Filed under: News | Tags: sex education, sexuality, special needs Leave a comment »The Sexuality & Disability Consortium (SDC) with the Institute on Disability and Human Development at the University of Illinois at Chicago has a wealth of sexuality resources available on their website to support people with disabilities to enhance healthy sexuality and relationships.
Included with their resources are Fact Sheets on topics such as:
- Myths and Misperceptions of Disability and Sexuality
- Guardianship and Consent Talking About Sexuality Tips for Parents
- Teaching about Privacy for Families and Caregivers of Children with I/DD
The SDC is a group of people working together to provide research, advocacy, training and education to support people with disabilities to have healthy sexuality and relationships that they choose. The SDC promotes best practice approaches and provides training and education for people with disabilities, their families, and the professionals who work with them.
Disaster-Preparedness Tips for People With Disabilities
Posted: November 20, 2012 Filed under: Resources | Tags: resources for caregivers, special needs Leave a comment »People with disabilities need to be prepared to quickly escape their homes in the event of emergencies such as fires, floods, tornadoes and hurricanes, a Mayo Clinic expert says.
Preparations for people with disabilities are more complicated than those for able-bodied people.
“As we learned during Hurricane Katrina and other natural disasters, persons with disabilities need to consider a number of different factors, such as identifying who is in their support system, special transportation needs and what supplies to include in their emergency-preparedness kits,” clinical nurse specialist Lisa Beck said in a Mayo news release.
Beck worked with disabled patients to design patient-education materials, and she offers the following tips for people with disabilities:
- Practice getting out of the house quickly at least twice a year.
- Discuss any special needs with a local emergency-medical-services provider.
- Plan where to go for shelter and how to get there, and who may need to provide you with assistance.
- Compile an emergency-preparedness kit that can last 24 to 48 hours. It should include items such as medication lists, contact numbers, medications, catheter supplies and a first-aid kit.
- Think about shelter and supplies for your service animal.
More information
The U.S. Federal Emergency Management Agency has more about emergency planning and preparedness for people with special needs.
(SOURCE: Mayo Clinic)
Conference Program
Posted: October 10, 2012 Filed under: Resources | Tags: conference, presentations, resiliency, special needs Leave a comment »Overcoming the Odds: Promoting Resilience for Families with Special Needs
Program
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
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
Family Conference
Posted: September 24, 2012 Filed under: News | Tags: conference, resiliency, special needs Leave a comment »Overcoming the Odds: Promoting Resilience for Families with Special Needs
WHEN:
Saturday, October 13, 2012 9:00 a.m. – 3:30 p.m.
WHERE:
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
* advocacy
* 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 kschloen@devereux.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.











