[tri-wings] A little more about Beachside

My name is Tricia Luker.  I am a parent of
four children [3 biological -- 1 bonus child via my second marriage].  My
oldest daughter, Jessica tiptoed into the arms of the angels three years ago
at age 24.  Jessica had more spit and spunk than anyone I have ever met and
right up until her last moments here on earth she maintain her grit and her
grin.  Jessica had significant disabilities including mental retardation,
epilepsy and a rare mitochondrial disorder.   Jessica paved the road in our
community for a completely inclusive life.

My husband, Calvin is a Michigan attorney who specializes in civil rights
law for people with disabilities.  We met while I was a professional
advocate at Michigan Protection and Advocacy Service.  I was the Director of
Training Programs for P&A for several years, had a 3-year job at the
Epilepsy Foundation as Director of Family Services and also worked for
Michigan's Parent Training and Information Center as an advocacy specialist.

I am currently working [from Michigan] with the Beach Center in Lawrence,
Kansas.  The Beach Center is a federally funded program that focuses on
disability and families.  I am working to help them revamp their outdated
web site and bring it up to speed.  I am not the techno goddess but I am
working to write family -- real life -- in the trenches -- stories to
spotlight on the web site and to identify helpful resources for families and
professionals.  I am also Exceptional Parent Magazine's Editorial Director
for Special Projects.

I write to this listserve hoping that families will want to share their
successes and will choose to also share examples of events they would not
label as "success" but that were life changing events -- our ahhah moments.
The Beach Center believes that parents and professionals grow when we are
sharing.  We have high hopes that the new web site will be up by the end of
the summer.  When it is up and running we will have lots of downloadable
resources for parents and professionals.  One of the things I am very
excited about is that we will be posting a young man's business plan and
sample PASS plan [through SSI] to help him start his own business.  We often
hear about PASS plans but few have access to actually look at one.  We will
have free downloadable glossaries, curriculums, research, etc.  It is going
to be huge but can only be meaningful with family input.

I am attaching a sample of an ahhah moment for our family.  I can call or
email people on list or privately.  As a mom, I know it is sometimes tough
to find time to sit down and write a grocery list let alone an article --
but if you are willing to share, you can email me your moments or I can call
you and you can tell me about it -- and then I will write it up -- send it
to your family for approval and when the article is deemed "okay" then we
will post it on the web site.

I look forward to participating on this listserve and hope that my husband,
Calvin and I will be able to continue to honor and remember Jessica by
sharing with other parents.  It would be easy to crawl into a hole and never
get out but that wouldn't do Jessica's legacy justice.

Thanks for letting me participate.

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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