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Run for Autism

  • Posted on September 6, 2009 at 12:00 PM

I’ve seen many attempts to raise funds for autism research, most of which I’ve refused to participate in.  The only autism-related fund raising I’ve contributed to is the fund for our local respite program.  However, I’ve recently learned more about OAR (Organization for Autism Research) and I think it’s something I might be able to support.  I’m still not entirely swayed, but I’m open enough to the idea to post the following news from an e-mail sent by Michael V. Maloney, OAR’s Executive Director:

The RUN FOR AUTISM – Chicago is OAR’s largest fundraising event of the year.  This year, The Bank of America Chicago Marathon launched a fun and interactive opportunity that allows you to leave your “digital mark” on the Windy City in anticipation of the marathon on October 11th.

We invite you, your friends and family to log-on to www.chicagomarathon.com/footprint and create a free personalized digital footprint, which includes a shoe tread, personal photo, quote, and your support for OAR. Just select “Run for Autism - Organization for Autism Research” from the charity dropdown menu and create your footprint. Be sure to save the jpeg image so you can share your footprint others, inviting them to log-on to create their own footprint and show their support OAR.

The first 50,000 people to create their footprint will earn $1 donation to charity of their choice, including OAR. You don’t have to be a RUN FOR AUTISM participant to make your mark on Chicago this fall; create your footprint today and spread the word.

Now, I’m not planning on joining the run for autism.  I’ve been to Chicago – twice.  I’ll go again, but spending $30 + (not including gas, food, or other expenses) to participate in an event just isn’t in our budget.  Especially when I’m not 100% on-board with the organization.  However, leaving a footprint sounded worthwhile.

It’s a little hokey, but it gives you the opportunity to choose from a variety of charities (including OAR, but not them exclusively) for a bank to donate money to, which seems like a good cause just about any way I look at it.  If you’re going to do this, you have to design your footprint by October 9th!

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OAR’s Telemedicine Research

  • Posted on August 25, 2009 at 12:00 PM

I had the very special pleasure of talking to Dr. Peter Gerhardt, President & Chair of the Scientific Council of OAR (Organization for Autism Research), for an article that is still under consideration.  In our conversation he mentioned OAR-funded research on Telemedicine.  So, when this popped up in my e-mail box, I had to check it out.

“The two-year project will measure the effect of telemedicine support on parents’ ability to provide PRT to improve functional verbal communication in their children with ASD.”  It compares parent treatment with and without telemedicine support after the same initial training program.  If telemedicine support proves effective it may provide a cost-effective means of helping families provide effective learning environments for their autistic children that facilitate the development of readily recognized social communication skills.  In many areas, cost and shortage of services result in long waiting lists and limited service options, therefore if this procedure proves effective it will increase access to timely treatment options.

As a side note:  “PRT is an evidence-based model that uses both a developmental approach and the science of applied behavior analysis (ABA) procedures to target areas that underlie the core symptoms of autism, including impairments in social interaction, communications, and repetitive/ restrictive behaviors.”  The value of the “evidence-based model” may seem questionable after reading Michelle’s post.  However, OAR states:  “Among the myriad interventions that claim some degree of effectiveness with individuals with autism, interventions based upon the principles of applied behavior analysis (ABA) have the most comprehensive and sophisticated research base by far.”  That, admittedly, offers little reassurance in the face Michelle’s report.

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Health Effects of Activity Limitations

  • Posted on August 17, 2009 at 12:00 PM

Dr. Whitney P. Witt recently published a paper, “The Impact of Childhood Activity Limitations on Parental Health, Mental Health, and Workdays Lost in the United States,” concerning her research determining whether children with activity limitations (i.e., children whose activities are limited in comparison to their age-appropriate peers) affects the physical and mental health of parents.  Not surprising, Dr. Witt found, “Parents of children with any activity limitation were significantly more likely to experience subsequent poor health and mental health.”  If the activity limitations were on-going and/or multiple children lived with activity limitations in the same family, then the odds of poor mental health were significantly increased.

The results are not surprising.  She concludes:  “These findings indicate that child health can importantly influence the health and work behavior of the family and that health care providers should consider a family-centered approach to care.”

I don’t disagree.  Family-centered health care is important.  But, and this is a BIG but, there is a time-tested method of assisting these families.  Witt touches on that as well:  “Employers should consider offering respite care or additional support services for families whose children have activity limitations. This could enable the parents to miss less work and may improve workplace productivity.”

Neither my husband nor I have ever worked for an employer that offered such a benefit, though our work history has suffered due to the special needs of our children.  However, Wisconsin has an excellent (read here: expensive!) autism program that provides respite care to our family.  It is a sanity-saver!  Respite care is vital when you’re raising children with special needs.  Unfortunately, it seems funds for these programs are too few, spread too thin, and too limited to benefit as many people as need it.  For example, though these services are widely available to Wisconsin families with children with autism, families with children experiencing other special needs and activity limitations do not share in these same benefits.

There is a cost to raising children with special needs.  The cost is real, whether it’s spent preventatively or on treatment.  Our families are worth the cost.  Our productivity is worth the cost.  Our health is worth the cost.

“There are substantial health, mental health, and work implications for parents caring for children with activity limitations.  Addressing the needs of these parents could help improve the health and well-being of the whole family,” Dr. Witt said.  And she’s right.  It would also make for better employees, better citizens, and a better nation.

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