Every time I come back from my Partners in Policymaking class, I have more to share about disability issues and some of the cutting-edge ideas in the needs and care of our largest minority: people with disabilities.

This month our topics were housing and employment. Quite frankly, since LuLu is only 11, I haven’t given that much thought to either of these topics. I can’t see a clear course for her future, so in some ways, I avoid looking ahead. But there are a few things I do know. One, she’ll need to live somewhere and that somewhere will eventually not be... more

I realize as the weekend creeps in, that this time last Friday I was feeling the same level of exhausting, frustration and gratitude that it’s the weekend. It’s been an incredible week.

1. Last Friday, our attorney emailed me a mound of paperwork from the school district of things they want me to respond to over the next few days, making more work for an already pretty busy mom. I’m highly frustrated that I have to take the time to respond. 2. On Monday, I discovered that Kay, despite doing an excellent job last semester of self-policing and keeping... more

National Public Radio (NPR) did two segments on the importance of play recently. And I think they bear watching. In Old Fashioned Play Builds Serious Skills, it is pointed out that back before the mid-1950s play was not so much associated with toys as it was with unstructured free time. But the advent of television advertising and marketing to children has changed that.

Combine that with the push by parents to have children involved in organized activities and the lack of recess during... more

I’m tickled at LuLu’s brightening and new-found independence. She’s excited about operating the microwave, learning how to heat water to prepare her lunch and answer the phone. But with each new independent step, I’m reminded that I need to watch her carefully, to make sure she understands exactly what she’s doing. For example: To avoid things like foil in the microwave, or the wrong burner being heated up.

And Marie’s blog about EMDR reminded me of the one incredibly successful... more

There’s been a thread of happiness floating through the air around here. Despite times everyday when LuLu exhibits frustration, there are times when she’s just happier, and “brighter”. Three weeks ago we went back into the hyperbaric oxygen chamber on advice of one of her doctors to see if we could get some relief from the GI distress she has been in.

The folks at the hyperbaric center we use are angels. They were able to work us into the schedule immediately, and in such a way to minimize the number of trips (1-hour, one-way) we had to make by scheduling two... more

LuLu emerged from her bedroom this morning with lips coated in a rustic brown color. She has large, full lips and did look a great deal like a Brats doll.

“I look sexy!” she declared.

Rather than panic or even hint at disapproval, I’ve learned to respond to things like this with a simple question, “What does that mean?” If I react with shock to anything, it immediately cements that thing into LuLu’s brain, hardwiring it to be brought up over and over (usually at the most inappropriate times). So fear of LuLu proclaiming herself “sexy” at church, the grocery... more

Did I mention that I hate school buses? For reasons I’m sure Freud would be able to explain, I have channeled all my anger, resentment and unresolved negativity about our due process court case with the school district onto school buses. The sight of them makes me cringe.

Today, after the debacle of an endocrinologist appointment, we returned to our neighborhood just in time to…you guessed it…get behind the school bus! Now ours is a large neighborhood, and we live in a cul-de-sac at the very back of it. The school bus makes no less than six stops along... more

Most days I’m able to get up and do my “mom thing” without much emotion or forethought. Today was like any other day, tooling along as I juggled convincing LuLu to do her composition assignment, letting the cable TV people in and out of the house to repair our service, and conferencing with LuLu’s teacher.

This afternoon we headed off to the long-awaited endocrinologist appointment (made 2 ½ months ago). I had major trepidation about this appointment, because I’d been forewarned by all the doctors “on our team” that endocrinologists are notoriously cautious... more

To finish the series on disability law, we need to look at the Americans with Disabilities Act of 1990. Known to the general public as the act that caused all the handicapped parking spaces, ramps and wheelchair access restrooms, this act prohibits discrimination on the basis of disability in employment, public accommodations, transportation and telecommunications.

The three basic obligations under ADA are to:

1. not discriminate based on disability.

2. provide effective communication to those with disabilities

3. provide physical access

The... more

Feel like watching TV tonight? Well, I’ve decided that tuning into the new ABC drama, Eli Stone is going to be worth the watch. Why? Because it’s in the center of the autism controversy.

The American Academy of Pediatrics has called for ABC to cancel the first episode of this series because the story involves the main character, a prophetic attorney, representing a mother and her son with autism against a vaccine manufacturer (and winning) for the mercury placed in the vaccine that “caused” the boy’s autism.

The AAP believes that airing this show will increase the number of parents who decide not to... more