Saturday, November 29, 2008

Calling for Twitter Members to help a Family out this Holiday Season

This request is for another Special Needs Mom on Twitter. Her daughter Janelle is six years old and has a rare form of Epilepsy called Lennox Gastaut Syndrome. The Mom, Kelly was diagnosed on Thanksgiving Day with a form of Leukemia.

I would like to bring a gas card for her husband to have to help with the expense of traveling to visit Kelly. I want to get a gift card or gift certificates from some websites for presents for her kids Jack and Janelle. I live fairly close to a Toys R Us and can get one to bring to Kelly so she could order items online for her kids. I think a grocery store card would be a welcomed gift also.

She was transferred from Orange County to UCLA in West Los Angeles where she will be for one month. She is hopeful to return home by Christmas. I live in Los Angeles near Downtown. I spoke to Kelly on the phone this evening and will be visiting her later next week.

Anyone who contributes please let me know your twitter ID so I can add it to the card to Kelly. This is the Holiday Season, please consider helping the family out by donating any amount possible so that some gift cards can be delivered. Thank you for reading this and wanting to help out a fellow twitter member.

Picture of the family.

Sunday, November 23, 2008

Autism Twitter Day

I am putting together an event at Twitter to promote positive autism awareness. This is still in the planning stage and not yet finalized on the date, number of hours and time frame for this to take place.

I placed an inquiry on HARO - Help A Reporter Out last week. Here is that posting which appeared in the afternoon edition Thursday, November 20, 2008:

"Will be promoting positive autism awareness on twitter one day in mid December. Seeking products geared to the autism and asperger community to give away as prizes for questions answered and pop quizzes on the subject. Looking for products to cover all age groups and including sensory type items. Here is a listing showing all those in the autism/asperger community on Twitter.

I can also do reviews on my autism site. I am listed at Help brighten the lives of autism families by contributing to this positive event."

If you are also a member of twitter or joining twitter, please post your ID here so I can add it to the page listing all autism connections. If you have a product you would like to offer for one of the giveaways please contact me through email listed at this blog or through twitter direct message system (DM).

I would like to find out when the majority of families who are on twitter can participate in this event. I have a poll here for a few days, please comment here in regard to your vote.

I need to know if it is best on a weekend day or weekday. I see many events taking place on twitter and they all seem to be at night on a weekday. I am on the west coast and would prefer Friday or Tuesday so I can prepare and be ready while my other son is at school. I am running for Secretary of the CAC with LAUSD and will be at elections on Monday.

I have been thinking that 4-6 hours is too long and would like to try it at two to three hours. If you have an opinion on this please give me some feedback so I can finalize this before the end of this month, get a logo or something for a button to promote the event and share with others. Plus I still need to get all the pics of the giveaways and have a sign up with Mr. Linky for those who want to attend.

Again, please take part in the poll and offer any thoughts in the comments. I am using my Pecs Club Ning Site and created an autism twitter group to post ideas and examples, a brainstorming group for this event.

Sunday, November 9, 2008

Kay and Flo - Autistic Twin Savants

These twin savant sisters were profiled on Discovery Health. Today (11/9/08) at 9:00 AM was the last airing for this tv special. I really enjoyed learning about these women who also were born in New Jersey, a few years prior to me in 1956. They have led an interesting life. They can recall day and dates before and after they were born and need to chart and document shows as part of their daily routine.

They have idolized Dick Clark for 25 years, meeting him two times with thirteen years between these meetings. I liked how a news anchor (Dave Wagner) became a family friend for the past twenty years after they called him up and grilled him on a number of topics. My 13 year old son on the spectrum viewed this with me. I told him these women were his google, all he had to do was ask them data for his research. Prior to being a news anchor he was a disc jockey.

A few things that Kay and Flo charted were the entire episodes of $100,000 pyramid and the clothing the anchor and his family members wore. This kept their day structured and one of the autism experts in savant studies said this was typical behavior for savants.

Extraordinary People aired in the UK, July of 2008. Here is a photo of Flo and Kay Lyman. A synopsis of the UK show.

One of the major networks needs to interview Kay and Flo and share their story in more depth so that more families can gain insights and also for services and help for these women. A UK review of Rainman Twins.

The Application of Savant and Splinter Skills in the Autistic Population Through an Educational Curriculum - Results of a Case Study Research Project from Wisconsin Medical Society.

Kay and Flo described themselves as human computers. They dressed alike, hardly showed any eye contact, were excited to get their hair done at a salon, went to NY to see Dick Clark in 2006 for his return to the Rockin' New Years Eve. They said they want to be buried with all their Dick Clark memorabilia. They stated that Dick Clark was like a father figure they never had.

I am hoping to see more coverage on these amazing women. A google search does not provide much, which is a shame considering their age and uniqueness being autistic twin savants.
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