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Author Archives: Deborah

In addition to her job as a computer engineer and her single parent responsibilities, Deborah is president of a state-wide family support group for families whose lives are touched by deafblindness, and is a tireless advocate for all people with disabilities. She writes at Pipe Cleaner Dreams and her writing has also been featured in local magazines and newspapers. Ashley’s story has also been chronicled in a book by Jonathan Mooney titled Short Bus Stories.

Worth Every Challenge

Written on November 18, 2009 by Deborah

4 Comments

I just posted this on my personal blog, and normally would not duplicate it here. But since this is National Adoption Month, and since adoption is the thing that has made my life complete, I feel compelled to continue spreading the word. Hope you don’t mind… From a very young age, I always wanted to…

in Family Life, Raising Awareness

- 4 Comments

Ramblings of a Fevered Mind

Written on November 11, 2009 by Deborah

5 Comments

I tried, really tried, to come up with a good and interesting post for today, but most of my family has the H1N1 flu and I just can’t seem to focus my mind enough to write. So I decided to share some of the random thoughts that have been running through my mind. For instance,…

in Conditions and Diseases

- 5 Comments

Say ‘Ahhhh’

Written on November 4, 2009 by Deborah

3 Comments

For the most part, I have been very blessed to find medical professionals who do an excellent job of providing care. I can say without a doubt that most of the doctors and other healthcare staff we see have never treated a child with my daughter, Ashley’s, unique combination of disabilities. But they are doing…

in Hospital Survival Tips

- 3 Comments

This Little Piggy Stayed Home

Written on October 28, 2009 by Deborah

5 Comments

I am a worrier. I think that just comes with the territory when you are the parent of a child with special needs, especially a child with significant medical issues. But nothing has consumed me with worry as much as the H1N1 virus. I worry each year about the seasonal flu, and my family was…

in Conditions and Diseases, Medications and Treatment Options

- 5 Comments

We Need Black Jello

Written on October 21, 2009 by Deborah

0 Comments

Comedian George Carlin said, “You know what we need – black Jello.” Think of the fun you could have if you served black Jello for dessert one evening! Something totally unexpected can add a special brightness to a day. In fact, as human beings, even though we seem to fight change, we also seem to…

in Advocacy, Dealing With Public Perceptions

- 0 Comments

My Sisters

Written on October 14, 2009 by Deborah

5 Comments

I didn’t belong to a sorority when I was in college, but I feel like I belong to one now. I ran into one of my sorority sisters in the parking lot at Target yesterday. She, like I, was struggling to get a wheelchair out of the back of a vehicle. The slight smile on…

in Uncategorized

- 5 Comments

My Definition

Written on October 7, 2009 by Deborah

0 Comments

Deb*or*ah [deb-er-uh, deb-ruh] -noun 1. mother of four children, three of whom have disabilities 2. tireless advocate for her children and others with disabilities 3. advisory board member 4. trainer 5. blogger 6. ex-police officer, current computer engineer, avid reader, gardener, hiker, beach lover, and basically normal person with typical dreams and desires ——————————————————————————– In…

in Family Life

- 0 Comments

Vacation Anxiety

Written on September 30, 2009 by Deborah

2 Comments

My family has taken only two vacations in the last ten years. Because I am a single parent of four children, three of whom have significant disabilities, planning a vacation overwhelms me. For instance, one of our two vacations has been a Make-A-Wish trip to Disney World. That one worked pretty well because I had…

in Uncategorized

- 2 Comments

I Wanna Hold Your Hand (among other things)

Written on September 23, 2009 by Deborah

6 Comments

I’ve got birds – I’ve got bees – what I don’t have is a teenage daughter who understands her sexuality. But that teenage daughter is longing for those things she is having trouble labeling. My 18 year old daughter, Jessica, is significantly intellectually disabled. But her hormones work just fine, and she is trying to…

in Family Life

- 6 Comments

Should You or Shouldn’t You?

Written on September 16, 2009 by Deborah

26 Comments

My children and I were shopping at one of the big box electronic stores this weekend when I saw a lovely family – Mom, Dad, and two teenaged children. One of the children had Down Syndrome. What gave me pause was that Mom was walking through the store holding the hand of the teenager with…

in Day In And Day Out, Dealing With Public Perceptions

- 26 Comments