The Center for Parent Information and Resources (CPIR) serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.
“Life in a Special-Needs World” Exclusive Report Explores Health and Happiness of Children of All Abilities NEW YORK, March 11, 2014 /PRNewswire/ — Parents magazine today revealed exclusive results from a study of moms of children with special needs…
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Support continues to grow for the Achieving a Better Life Experience Act (ABLE Act – S. 313/H.R. 647), introduced by U.S. Senators Bob Casey (D-PA) and Richard Burr (R-NC). The ABLE Act would help parents save for their children’s long term care and ease financial strains faced by families of individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, medical, and transportation. The New York Times Editorial Board has weighed in on this important issue. Read their endorsement of the ABLE Act here.
Dr. Robert Naseef (parent to an adult child with autism and a psychologist) sharing insight into the challeges a father faces when raising a child with autism. (YouTube video, 30 minutes)
Supporting Families with Special Needs Program Schedule
Saturday, October 19, 2013 9:00 a.m. – 4:00 p.m.
Rosemont School of the Holy Child
1344 Montgomery Avenue
Rosemont, PA 19010
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. This year’s conference will feature Dr. Robert Naseef, author of “Autism in the Family: Caring and Coping Together“. This conference is offered free of charge to the community. Breakfast and lunch will be provided. Please RSVP/Register.
A free shuttle courtesy of Krapf Bus Companies will be available from SEPTA’s Rosemont Station to the Conference for those taking public transportation. The shuttle will run every 15 minutes from 8:00 a.m. until 5:00 p.m.
Supervised child care for children ages 2-13 of all abilities will be available on site*. Please mention any child care needs, including special needs, when registering.
For siblings of children with special needs a workshop will be offered. Sibshop: This workshop is designed for school-age siblings of children with special needs to create a fun, relaxed atmosphere. Trained leaders share information through games, cooking, craft activities and other other creative techniques.
From 1:00 p.m. – 3:00 p.m. Merrily the Clown will entertain the children with face painting and balloon sculpting.
* Child care will be supervised by Devereux staff, each of whom has had all appropriate screenings including child abuse clearances and background checks. Children should wear rubber-soled shoes so they can participate in activities inside the gymnasium. Arts and crafts will be part of the day’s events, so please have children dress appropriately. Meals will be provided, so please be sure to mention food allergies when registering. A First Aid station will be available in case of emergency.
CONFERENCE PROGRAM SCHEDULE
|9:20 – 9:30||Welcome – Bob Kreider, President and CEO, Devereux|
|9:30 – 10:15||Keynote Speaker – Robert Naseef, Ph.D.
“Being Present: The Family Journey to Acceptance and Resilience”
|10:30 – 11:50||Workshops: About the Conference Speakers
a. FLIP IT: Transforming Challenging Behavior – Nefertiti Poyner, M.Ed.
FLIP IT is an interactive session that teaches participants to use a four-step strategy that helps young children identify their feelings, learn healthy self-control, and reduce challenging behavior. In this session, participants will learn the importance of the four steps of FLIP IT (Feelings, Limits, Inquiries, and Prompts) as they relate to the healthy social and emotional development of young children. Families who attend this workshop will receive one complimentary copy of “FLIP IT: Transforming Challenging Behavior” by Rachel Sperry.
b. Parenting from Childhood to Adulthood – Barry McCurdy, Ph.D. & Stewart Shear, Ph.D.
This session is designed to provide parents with simple strategies for success across the developmental lifespan, including children and adolescents with and without disabilities as well as adult children with disabilities.
|12:00 – 12:50||Luncheon and guest speaker – Vernick Smith, M.S.: “Healin’ the Child Within”|
|1:00 – 1:50||Town Hall – Building a Support System – Facilitated by Amy Kelly & Paul LeBuffe, M.A.
Community of Hope Award – Frank and Colleen Foti
|2:00 – 3:20||Workshops:
a. FLIP IT: Transforming Challenging Behavior – Nefertiti Poyner, M.Ed. *See description above.
b. Parenting from Childhood to Adulthood – Barry McCurdy, Ph.D. & Stewart Shear, Ph.D. *See description above.
|3:30 – 4:00||Resilience Activity – Building Your Bounce – Nefertiti Poyner, M.Ed. The attitude you have as a parent is what your kids will learn from more than what you tell them. They don’t always remember what you try to teach them. They remember what you are. Building Your Bounce: Strategies to Support Adult Resilience is a training designed to explore the importance of taking care of and promoting the resilience of adults. Participants will learn how the social and emotional well-being of adults has an impact on our ability to care for children as well as simple, inexpensive strategies to reduce stress and promote resilience in adults.|
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
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.
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.
The U.S. Federal Emergency Management Agency has more about emergency planning and preparedness for people with special needs.
(SOURCE: Mayo Clinic)