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Asking FOR help, asking TO help

Monday, January 10th, 2011

Help Wanted SignAs Americans it is clear that we value and admire that independent, cowboy, “can-do” spirit. Independence is always high on the list of things that we want for ourselves and our children.

Asking FOR help

Asking for help is an emotionally loaded act, but one that I HIGHLY recommend. As a mom of a young adult with a disability I have found that asking for help has been one of the best and most productive things that I have done over the years. Mom’s often have the desire to be seen as the “supermom”, able to take on any challenge, solve any problem with her own creativity and determination. The benefits that I have seen from asking for help have not only been getting assistance with a particular issue or problem, but I have as a result become connected to people and a community that has made my life better and richer in many ways. In asking for help, whether it be a small short term problem, be specific in your request and be willing to participate in the process in whatever way you can.
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Is it possible to change the world and still have time for Oprah in the afternoon?

Friday, October 8th, 2010

fingers balancing a globeWhile I have lived a life blessed with so much (a loving, stable family, financial security, a good education, great opportunities, good friends) I have also faced my share of challenges (a child with autism, two children with juvenile diabetes). I have learned a lot and tried my best to share my experiences and my talents to help others who are facing similar struggles. I will happily take the time to mentor a family with a newly diagnosed child. I try to contribute thoughtful, pertinent comments and answers to the groups, both in person and on line, in which I participate. I actively volunteer and support Parents Helping Parents, which provided such critical support to me in the early years.

Still I find myself thinking, “Shouldn’t I be doing more?” I have friends who have founded schools and non-profit organizations, written books, who travel across the country speaking on behalf of children with special needs, advocate in Sacramento and Washington DC, who provide intensive (and expensive) therapies for their children and work tirelessly for their families and the greater community. I so admire these people and the example that they set and the work that they do and they make me want to do more and do better, but somehow I just don’t seem to be able to really get going.

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Learning the Art of Flexibility…

Friday, September 24th, 2010

I’d have to say the most memorable trips I have ever taken were the ones in which humor came to play. When you travel with a family member who uses a wheelchair, you tend to laugh, A LOT!

With just Jon (now 18 yr old son with CP) , one such trip was the Washington DC trip for a leadership conference. The conference was a week long, with teens from all over the US who, judging by their attitudes, had never encountered a person with a wheelchair before, let alone interacted with one. We were picked up on a charter bus at the airport, and that is when the fun began.  It was also apparent that Jon was the first person to attend this conference who used a wheelchair. He was the only person using a wheelchair-and yes, we brought his power one, as he had been to Washington DC several times before, and found the main tourist sites very accessible.  That’s when the real fun began….

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Confessions of a “control freak” – my life as a mom of children with special needs

Friday, September 10th, 2010

text on wall that reads: fear
As the mom of 2 children, one with autism, both with type 1 diabetes, I have had my fair share of challenges to face over the years.   One of the biggest issues that I struggle with is that of control, or at least the illusion of control.

This control freak pathology is a common one among parents of children with special needs.   We have been faced with a lot of things in our lives that we didn’t have a say in or control over, so we throw ourselves head on into trying to control every other thing in our lives.   No one could possibly care about our child as much as we do, so how can they be trusted to do the critical work of caring for, teaching, treating our vulnerable children?

Trying to control everything, however well-intentioned our efforts might be, is an exhausting and isolating effort.  The reality is that it’s not so much about control as it is about FEAR.  Fear about who will care for our children when we are gone, fear that the systems and professionals involved in that care will not be available or properly prepared, fear that something else, something even worse than what we’ve already faced, might happen at some unknown, unanticipated time in the future.

For me, the thing that best tempers my control/fear issues is reaching out and asking for help and sharing my fears with other parents, friends and family. Even in the act of asking for help I have to overcome a bit of fear, the fear that I am NOT the supermom that people expect and that I really can’t do it all. Overcoming that particular fear and letting go of a little control has made a huge difference in my life.

Go ahead. Give it a try. We can help each other.

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