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Wednesday - August 22nd, 2007

I am incredibly fortunate to have a loving, supportive husband, great kids (even if they are adults and still make me a little crazy) and a fulfilling, meaningful job to go to every day.  It is a pleasure to work for an organization where the Mission, values and principles mesh with my own so well.  My grandbabies are growing so fast it just astonishes me.

Earlier this summer my niece got married in Scottsdale and it was wonderful.  I will never think of dancing at the reception in the same way.  My niece married a man who is Tongan.  She is half Samoan and dances with a semi-professional Polynesian dance troupe.  Her dance troupe came and performed at the reception, including a fire knife dance.  After they were done, both sides of the bridal couple performed dances for and gave gifts to the other side of the family.  We had such fun and as a bonus got to spend several days with my parents since we rented a minivan and took them along.

It was a blessing to see how everyone accepted my daughter and did their best to understand what she was saying.  She has a difficult time talking and if she feels pressured to talk she gets frustrated and stops trying.  My heart aches when she doesn’t fit in or isn’t included in activities because of her disability but she had dance partners until the D.J. packed up his equipment to leave.

Jennifer has tremendous gifts to share but frequently people don’t take the time to get to know her and benefit from that.  She gives the best hugs.  When she is hugging you nothing else matters to her but you.  She loves old people (as she calls them – grandmas and grandpas).  She loves to take care of people.  She has a wonderful sense of humor and wants all our friends and family to live at our house.  If people can’t see past her disability to all these gifts and more, who has the disability?

I am counting my blessings and I thank God for all those good people in our lives who love my family and work to make Jennifer’s life meaningful and full.  I hope you have people in your family’s life who are blessings to you and enrich your lives.

Till next time,
Doris

Posted by
Wednesday - August 22nd, 2007

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Posted by
Friday - November 3rd, 2006

This has been an extremely busy few months.  Tremendous changes are happening for people with disabilities and their families.  I am even dreaming about work at night.  I think I need a vacation.
The Federal government – Centers for Medicare and Medicaid (CMS) – approved New Mexico’s Medicaid Home and Community-Based Waiver Mi Via.  This is the culmination of thousands of hours of work over several years by self-advocates, families, advocates, service providers and state employees.  Mi Via is the most comprehensive home and community-based waiver in the country.  No other state has even attempted to put together a program that covers all disability groups, including brain injury, with a selection of services that encompasses almost anything anyone with a disability would need and still gives control of the money to the individual receiving services.  Everyone who had a hand in bringing Mi Via into existence should pat themselves on the back.  It is a job well done!
Our daughter, Jennifer, has a very simple ISP so I don’t think we will hurry to change to Mi Via.  She also has a great case manager – Randy - who has been very helpful and I’m not interested in reducing his time with us.  I am, however, very happy that another choice exists if we do want something different in the future.  So much to think about.  Such a tired brain.
I am trying to have a real life in addition to work.  I can’t believe that it is past time to start thinking about Thanksgiving and Christmas.  We usually have Thanksgiving at my parents’ house and then everyone comes to our house for Christmas.  There could be as many as 20 people to feed.  Time now to start the lists – presents, invitations, menus, shopping, etc. 
I hope you have a very safe and fulfilling holiday season.

Doris

Posted by
Friday - November 3rd, 2006

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Posted by
Monday - August 29th, 2005

Today is the birthday for one of my sons.  Now I know I’m old.  I’ve been going through back issues of The Arc’s newsletter in order to help with a project to identify the milestones in long term care policy and activities at the national and state level over about the last thirty years.  (I even remember some of them.)
Doing this reminds me of how far we have come in our disability policy.  Or maybe we have just come full circle – back to a time when people with disabilities were simply a part of their communities.  Before we tried to “fix” them or “protect” them or “protect” us from them.  Except for school where I’m not sure kids with disabilities were ever fully included, there have been times and communities where people with disabilities belonged and were participants in community life.
It seems a shame to have to work so hard to be accepted as an important member of society with the value and respect due each of us.  The fact remains that only the people with disabilities and their families and advocates have a vested interest in changing the status quo.  It was true in the past and it remains true today.  For all other groups of people, change means having to think and act differently and that is hard.  It means changing how they do their jobs, what jobs they hold, where they work, who their co-workers are and with whom they will socialize and worship.
It is so easy to stay in our own safe lives never realizing the fuller lives that wait for us when we recognize and embrace the diversity of abilities in the people who share our communities.
This acceptance and inclusion is what I want for my daughter.

Doris

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Posted by
Monday - August 29th, 2005

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