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Thursday, September 25, 2014
Are you saving the date???
Tuesday, September 16, 2014
FDA deciding whether to ban skin shocks....
JREC uses graduated electronic decelerator (GED), a device that is attached to the arms or legs. If an individual engages in self injurious behaviors (SIBs) or is physically aggressive to others, a center staff presses a button to activate the electrode which delivers a two second shock to the person. Some liken the shock as being stung by a bee, others describe it as being stung by hundreds of bees.
The FDA initially cleared the device for use in 1994. JREC started using a device 2.5 times stronger than the original FDA cleared device when one person built up a tolerance to the shocks. In 2000, the FDA stated that the stronger version of the device didn't require clearance for use. In 2011, the FDA changed it's position and is now in the process of deciding whether the device will remain in use or be banned.
There are supporters for both sides of the issue. One parent, Sharon Wood of Charlottesville, VA supports the use of the device and fears that if it is banned that her 21 year old son will return to violently aggressive behaviors. In her interview with the FDA, Ms. Wood stated, "Do not take away what is saving his life.Don't take this away until you are convinced there are better alternatives."
In contrast to praise of the device by those such as Ms. Wood, Jennifer Msumba, a recipient of said shocks stated the the device doesn't feel safe. She stated she has nightmares, that the GED leaves burn marks and is prone to malfunctioning that results in unintended shocks. Ms. Msumba's mother is currently suing JREC. Cheryl McCollins also sued the center in 2002 due to her son being shocked more than 30 times within a seven hour period. JREC settled with Ms. McCollins.
It is my sincere hope that the FDA bans the use of this device. While I cannot compare my experience and knowledge in this field to that of any parent, I do humbly disagree with Ms. Wood in that the GED is the only option in helping address her son's aggressive behaviors. Caring for someone that has aggressive behaviors against themselves and others is terribly difficult, exhausting, and at many times frightening. However, history has shown the effects of using methods such as GED on our fellow human beings. We have learned a world of techniques that are far more effective and humane; person centered planning is one of the crucial lessons we have learned. We have to look at each person and find ways to reach them. We should not and cannot resolve any person as being unreachable and reduce them or ourselves to techniques such as the GED in the name of therapy.
Please share your thoughts.
Sunday, September 14, 2014
September events in your community!
Head out to the Delaware County Fair this week for fun and entertainment! The Delaware County Fair runs through Saturday, September 20, 2014. Be sure to take a walk through the Merchant's Building and visit the Delaware County Board of Developmental Disabilities(DCBDD) booth. There are some wonderful people from the DCBDD to answer questions and share information about services that are available to eligible individuals in the Delaware County area as well as various agency providers that serve individuals in the Delaware County area. Cornerstone Supported Living, LLC agency representative had a fantastic time Saturday night manning the booth the fair!
Leeds Farm Autism Harvest Festival
Know someone who wants to
Be a Super Star?
Auditions for Jesus Christ, SuperStar
are being held at
First Baptist Church,
101 N. Franklin St.
Delaware Ohio 43015
Sunday Sept 14 5pm -7:30
Sunday Sept 21 5pm -7:30
Click here for more information
Leeds Farm Autism Harvest Festival
Saturday Sept 20
9am to 11am
FREE to all children with autism and their immediate families
Click here for more information
Join Li Li's Team
Lorelei's Princess Parade
Crew Stadium
Sunday, September 21
Click here for more information
Monday, September 1, 2014
My Baby Rides the Short Bus.....
My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities by Yantara Bertelli is available on Amazon.com. It is a collection of parents' perspectives on raising a child with a disability. Both humorous and full of reality, this book is a good read. Karen Wang is one of the contributing authors of the book. Below is her advice on how to give attention to a sibling of a child with special needs:
At every IEP, I announce that the most important member of my 12 year old son’s support team is his 6 year old brother. My younger son knows his brother better than anyone else, and will probably be a part of his team longer than anyone else, too.
by Karen Wang
I haven’t hidden the truth from my little one: he knows about his future responsibility.
But he needs to be a 6 year old. And sometimes he still wants to be my baby. In the flurry of activity that surrounds my older son’s disability, it’s too easy to put his younger brother’s wishes on the back burner. So I’ve thought about how to re-prioritize the needs of kids like him who have a sibling with special needs. Here are 10 steps to get started.
10. Sib Nights
My 6 year old says that his favorite activity is Sib Nights at the Friendship Circle, which meets every other week for one hour. There he plays games, works on an art project and talks with other siblings who understand his life experience. Sib Nights follows the same structure as the SibShops curriculum, which is practiced internationally with proven long-term positive impact on the lives of siblings.
9. Daily rituals
Rituals or traditions can help build relationships, provide emotional security and develop self-regulation. Rituals may be religious or secular – a special moment shared when waking up in the morning or a bedtime routine are meaningful rituals to maintain. Every morning after the school bus picks up my older son, I announce to my younger son, “Mommy Time!” Then we share a story and a snuggle before he goes to school.
8. Validate
Siblings often express negative emotions, thoughts or worries that may be surprising. Try to listen calmly, without judgement. Make sure that he or she knows that your love is unconditional.
7. Kid swap
I know a family whose children are close to the ages of my children with similar needs. When the sibling tension is running high in both families, we swap kids – younger siblings go to one house, older siblings go to the other house. Everyone wins in that scenario.
6. Volunteer in the classroom
My younger son requested that I volunteer in the school library with his class once a week. It’s only half an hour, and my son usually acts “too cool” to interact with me in the library. But privately at home, he tells me that he loves to see me in school – he knows that I’m there just for him.
If once a week doesn’t fit your schedule, consider signing up for one school event or program. Some teachers ask parents to come in and talk about their career choice or area of expertise once a year, some schools have an art appreciation program run by parent volunteers a few times per year.
5. Focus on friendship
Encourage friendships outside the world of special needs. The social skills learned in those friendships can help make life more peaceful for everyone at home.
4. Develop interests 
Sports, art and drama classes, scouting and hobbies are all wonderful opportunities to develop an identity that is separate from a sibling’s.
3. Special outing with grandparents or other relatives
Allow time for siblings to develop relationships with grandparents and other relatives. These relationships will provide strength that is needed in the long run.
2. Special time with Mom or Dad
Arrange for respite care for your child with special needs so that siblings can enjoy your undivided attention. Go somewhere that you wouldn’t usually visit with your child with special needs.
1. Recognize the strength
Take a moment every day – or as often as needed – to acknowledge the fact that your child is trying to be strong for the sake of the family. Remind your child that he or she doesn’t have to be strong all of the time – every person has needs that the whole family works together to meet.
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