Brotherly Love

Sunday was pumpkin day for my punkins! It was also a day of brotherly love - big brothers helping a younger brother and sister!

Turning Wrong Into Right

This week has been an historic week for people with disabilities. Today, President Obama will sign into law the Twenty First Century Communications and Video Accessibility Act, and earlier this week, he signed the Rosa’s Law bill.

The Twenty First Century Communications and Video Accessibility Act will ensure that Web sites and makers of consumer electronics consider the vision- and hearing-impaired, who have been left behind as more communications tools move to the Web.

Here is a link to a Washington Post article that provides more details.

Also signed this week by the President was Rosa’s Law. Rosa's Law changes references in many Federal statutes that currently refer to "mental retardation" to refer, instead, to "intellectual disability".

Senator Barbara Mikulski said this when introducing the bill to the Senate with bipartisan support last November: “This bill is driven by a passion for social justice and a compassion for the human condition. We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me in a step further. Help sponsor the legislation that I offer on a bipartisan basis. Help me pass the law and know that each and every one of us makes a difference. When we work together, we can make change.”

I’m sure that not all Americans will agree with these two laws, and may even question their importance when war and famine and other horrible situations exist. But to people with disabilities and those that love them, this is wrong being made right.

A big thank you to everyone who worked to see these bills become law.

Monica and David

October is Down Syndrome Awareness Month. In honor of that, HBO will be airing a documentary titled, "Monica and David."

The documentary chronicles the first year of married life for a couple, both of whom are diagnosed with Down Syndrome. Here is a press release that was posted on the Hope House website about the documentary. And here is the website devoted to the show.

My favorite line in the press release, and the thing that will have me tuning in as well as recording the show is one made by Monica's mother, “As parents, we want people to look upon our children with special needs like anyone else. We want them to be treated with respect and with dignity… And yet, because we want to protect them so much, we are typically the first ones who treat them poorly by subconsciously denying them their rights to have a normal life.”

Trailer

The show will debut on October 14th at 8:00 PM. Write it on your calendars - set your Tivos - and then let's share our comments!

Special Exposure Wednesday

Baby's first steps!!! When Ronnie joined our family almost 7 months ago, he came with a walker and a wheelchair. He didn't have the strength in his legs to stand though.

First his physical therapist tried traditional AFOs (ankle foot orthotics), but they still did not provide enough support for his hips and legs.

The solution was to order full braces, which we picked up last week. And tonight at therapy, he took his first steps!!

The braces and the walker still need a few adjustments, but I predict my handsome boy will be dancing the night away at the school dances this year!



Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Seizures - 1 Medication - 0

In the last 10 days, Ashley has had an MRI under anesthesia to check for tumors on her brain stem and spine, and she had her 6 month checkup with the neurologist. She and I have both been very busy trying to figure out why we are seeing an increase in the number of seizures she has each day.

Ashley is on four different seizure meds - Depakene, Trileptal, Keppra and Topamax. Yet she was still having 3-4 seizures a day. About a month ago those numbers went up to 6-8.

Her seizures are not usually bad - just lasting 45-60 seconds each. She seems to be able to tell when one is starting, and she will get herself to a safe position, not allowing herself to fall once the seizure gets underway. Afterwards, rarely is she sleepy. In fact, she is often in a much better mood - almost like the seizure cleared some of the fogginess from her brain.

But, she has had life=threatening seizures in the past, and with each of the not-too-severe ones she has, I think back to the times when things were really bad. So, I keep a close eye on her seizures, a close check on her meds, and schedule frequent MRIs.

The good news today is that the most recent MRI did not reveal any tumors on her spine or brain stem. She still has three on her brain, but they are not growing and don't need to be removed at present.

The news from the neurologist wasn't quite as good. Since the four current medications are allowing the seizures to become more frequent, he is adding a fifth one. It is a new medication called Vimpat. I need to do some research on it, but he listed one of the side effects as sleepiness. I'm not wild about that. I'm also not wild about her being on 5 medications...

So that's the Ashley update for now. If anyone has any experience with Vimpat, I would love to hear it.

What Do You Do?

I've got two questions for you today. Neither of these issues are huge, just things that occupy my mind from time to time - like this past weekend!

First, how do you teach your children with special needs manners? I find myself having to prompt for a 'please' and 'thank you' from some of my children all the time. Ashley has gotten both of those things down, but not my other children.



I want their please and thank you to be spontaneous. I don't want to have to prompt.

And, how about other things? How do you teach your child with significant special needs to chew with their mouth closed, for instance - or teach your son that it is polite to hold the door for a woman, if indeed he can hold the door - or to say 'excuse me' after a burp.

Again, as with the please and thank you, I don't want to always have to prompt for good manners.

So, if anyone has some tips or things that have worked in your family, please share!

Secondly, if you have a child or children who use(s) lots of adaptive equipment - wheelchairs, walkers, braces, canes, standers, etc. - how do you keep your home from looking like an equipment showroom? Does it bother you to have all the equipment taking up lots of space in your home?

This doesn't bother me greatly - I'm not going to lose sleep over it because it means my children have the equipment they need. But just every so often, I would like my home to look a little less crowded with aluminum and plastic. I hope that doesn't make me a bad mother, maybe just an obsessive/compulsive cleaner! Or maybe, I just need to stop watching HGTV so much.

Any ideas on either of these two subjects would be greatly appreciated!

Not My Idea of Fun

In 2008, I wrote a blog post about Weston State Hospital in West Virginia, the hospital, though long closed, was bought and the owners were planning to use it for events such as “Psycho Path” dirt bike races, "Hospital of Horrors" haunting tours in October, and a "Nightmare Before Christmas" tour. They even renamed the hospital the Trans-Allegheny Lunatic Asylum.

Fast forward to 2010, and something very similar has happened.

Pennsylvania’s historic Pennhurst Center, once the focus of landmark litigation that sparked nationwide changes in treatment for people with intellectual disabilities, opened last night as a Halloween-themed haunted house attraction over the protests of disability rights advocates.

Advocates had unsuccessfully sought an injunction to prevent the opening of the “Pennhurst Asylum” show on the grounds of the property, once known as Eastern State Institution for the Feeble-Minded and Epileptic.

Even before the injunction was denied on Friday afternoon, advocates called for a boycott of the attraction, which references historic abuse and neglect of the institution’s patients and features a “registration nurse” who tells visitors what the asylum’s “doctor” has planned for them. Here is a video of what is in store for visitors:



The crumbling facility was closed in 1987 in the wake of a federal lawsuit alleging years of abuse and neglect. The suit, which spawned years of appeals and three U.S. Supreme Court rulings, alleged that residents had been beaten by nurses, strapped to beds, left naked or alone and drugged into stupors. At the time, the closure of the 600-acre facility was hailed as a civil rights victory.

Pennhurst property owner Richard Chakejian said said he and his crew are “just trying to pull off a fun, orderly event and we’re excited about that.”

Sorry, but none of this sounds like fun to me...