Smart Things

I've done some really dumb things in my life, but I've also done some really smart things. Here's a short list of my smart things:

• I bought carpet which is the color of dirt for my whole house.


• I taught and required my kids to begin doing their own laundry at the age of 12.


• I put lots of mulched areas in my yard - so much less mowing.


• I gave up accounting for my job in the computer industry.


• I got out of an abusive marriage right after the birth of my first child.


• I took both my school district and my state's Medicaid office to court - and won

And now just to balance that list out a bit, here's one really dumb thing I've done recently:

• I bought a car with an off-white interior.

So how about you? What are some of the smart things you have done in life?

A Life Rich With Enough

My house isn’t spotless, but it is clean enough.

The meals I make for my children are not often gourmet meals, and we do eat our share of junk food, but I am a good enough cook to keep everyone healthy and well-fed.

My children don’t get everything they ask for, or get to go everyplace they want to go, but they have enough to entertain and challenge them, and way more than a lot of children have.

My yard and garden are not the showplace of the neighborhood. During the Fall, the leaves stay on the ground a little longer than they should. During the Spring and Summer, the grass doesn’t always get mowed as soon as it should, but the flowers that grow wild and colorful are enough to bring a smile to most people’s faces.

We’re not the first family to clear the snow from our walkways and driveway, but we can make some awesome snowmen, and we have enough of a path to get to where we need to be.

My laundry basket is never empty but everyone always has enough clothes to look their best and meet their needs.

My children and I may sometimes long for more, but we know we are blessed and definitely have enough, and for that we are always grateful.

Worlds of Difference

Ronnie's urologist and nephrologist are both affiliated with the same big teaching hospital in our city. Their offices are one floor apart, but it feels like we are in two entirely different medical facilities when visiting the doctors.

The urologist is not all warm and fuzzy, but he and his staff are the most disability-aware medical team I have ever had the pleasure of meeting. I reviewed this doctor's office for my www.ustooplease.com website because I was so impressed.

And, I plan to review the nephrologist's office, but it will not even come close to being as positive a review.

Ronnie has seen this doctor twice now. We had to switch to a nephrologist who primarily sees adult patients because the pediatric nephrologist moved away. I really like the doctor - he is personable and warm and even a little quirky - but his disability awareness is very poor.

I requested an interpreter for Ronnie for each of his two visits. Neither time was an interpreter present. When scheduling Ronnie's next appointment, I tried again today to make sure that an interpreter would be available. After fussing loudly that no one has shown her how to order an interpreter, the scheduling person said it was the nurse's job to do that. Say what? The scheduler had no idea how to even start. I had to tell her what department of the teaching hospital handled such requests and I even had to tell her the director's name to contact if she needed assistance. Fortunately, I knew that information because my family frequently visits the medical offices at the hospital. But how would a first time patient know to do that? Would they, like Ronnie, have to see the doctor and not have a clue what was being said?

When I mention to the staff that Ronnie is Deaf (after they talk to him and appear baffled that he doesn't respond), they then just stop talking to him. All conversation is directed at me. I keep signing back to Ronnie, but he should be able to handle most of his own appointments now that he is older. The medical staff doesn't give him the chance to do that.

Unlike at the urology office where Ronnie and I feel valued and respected, I feel like we are a bother to a lot of the staff at the nephrology office. Since Ronnie and I do like the doctor, we are going to keep trying, but the staff needs to realize that they don't want to get me too angry. Just ask my school district special education staff.....

Special Exposure Wednesday

Who knew that the tiny little girl I brought home 14 years ago - the tiny little girl who couldn't tolerate her nails being cut unless she was under anesthesia - the tiny little girl who hated to have her hair brushed - would one day be sitting at the hair salon having her brows waxed!

She looks a little distressed in this picture, but truly she wasn't. She giggled after it was over and kept signing that she was beautiful!! Miss Arlene and Miss Amy did a wonderful job!

My little girl is so grown up!

Deaf Like Me

I know it may not seem like such a big deal to most people, but when Ronnie sees a Deaf person signing on TV, he gets so excited. We saw this commercial for the first time this past weekend. Another interesting aspect of this was that the commercial aired during Amazing Race where one of the contestants is a young man who is Deaf.

Viruses, Ear Buds and Forsythia

What a weekend. It was like my little corner of the world shifted just a bit, and everything ‘normal’, gave way to the unusual.

First my computer and I shared a virus. I thought my pneumonia was gone after 2 rounds of antibiotics and several other types of medicine. I was hopeful that with Spring just around the corner, the plague would leave our house and we could all be well for a while. I was wrong. Ronnie woke up Saturday morning with a raging cold, and since I have to do all those motherly things which require sharing of body fluids, now I too am sick – AGAIN.

To top it off, Saturday afternoon my computer started throwing up ones and zeroes and telling me I had a zillion viruses. Since we have pretty good virus protection, I’m thinking another family member opened an email that shouldn’t have been opened or visited a website that shouldn’t have been visited.

Fortunately, I have a resident geek named Chip and he spent the rest of the weekend restoring my computer to health. Somehow though, I still feel very violated….

Then came Saturday night, and one kid who shall remain nameless to protect his dignity got an ear bud from a set of head phones stuck in his ear. I didn’t know such a thing could happen, but apparently it’s pretty common based on the nurse’s reaction at the urgent care medical facility. With the proper tools, it was extracted but not without a bit of pain.

But one thing did happen to brighten my weekend. I love forsythia bushes, but Spring is still not close enough for mine to start blooming. I check the little buds every day hoping for their splash of yellow, but it’s just not time yet. Or so I thought.

I decided to cut some of the longer branches and bring them inside. I reasoned that maybe the warmth of the house and the sun streaming in my front picture window might urge the little buds to give up their gift. And I was right! Here’s the proof…

Good News Friday

(picture by Matt Kohashi/Gallaudet University Athletics)

Once again, I am thrilled that it is Friday! AND....this is a long weekend because of President's Day on Monday. The weather is beautiful, we are all finally well, and I can't ask for much more than that!

First some personal good news - I have finally saved up enough money to order Ronnie a specialized basketball wheelchair! The order has been placed, and in about 5 weeks, I plan to surprise him at basketball practice! Don't anyone tell him and spoil the surprise!

Here are a couple of other good news story from the week. Enjoy and I hope you all have a wonderful weekend!

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Mary and Stephen

(Photo by Keith Beaty of the Toronto Star)

As a mother, I dream of all my children finding that special someone with whom to share their lives. And, I think most of them will given what special people they are (yes, yes I know – I am a tad prejudiced). But I do think that search will be more difficult for my sweet Ashley.

Deafblindness is a disability of exclusion. It’s difficult for a person with deafblindness to reach out to others, especially when those others don’t understand the complexities of the disability.

So I was especially heartened when I read this story in the Toronto Star.

Mary and Stephen have been married for 32 years. Stephen is 66 years old and his wife, Mary is 67 years old. They are both deafblind. They attended school together as children, but then life took them down separate paths. However, in a story ripe for the movies, they reconnected many years later and quickly got married.

They both speak (through intervenors) of how much they enjoy their life. Stephen even, much to Mary’s embarrassement, says “The sex is good!” And now they are looking forward to spending the rest of their lives together.

That is what I want for my Ashley.

Mary and Stephen’s only reqret? They can’t have children. Mary’s mother had her sterilized when she was a young woman.

Ashley also loves children. So I will add to my dreams for her that she will one day be a mother. I can picture it in my mind, and it is a beautiful picture indeed.

Special Exposure Wednesday

A tale of two Ashleys....

Monday and waiting for the school bus - awake and alert...



Friday and waiting for the school bus - so worn out that even the bus holds no allure...



Being Ashley is pretty difficult most weeks...

Lawsuits Abound

Denise Payne, a Florida resident who has cerebral palsy, and her business partner, Robert Forlano, formed a 5013C charitable organization called the National Alliance for Accessibility. As in Virginia, all charitable organizations are required to register with the Florida Department of Agriculture and Consumer Services. Ms. Payne’s organization, however, is not registered as required by law.

Ms. Payne and her organization filed six lawsuits in the Roanoke, Virginia federal court alleging many area establishments are not accessible. Included in the list of establishments are several shopping malls, two hotels and Radford University. The six cases target Virginia, but Ms. Payne has recently filed over 200 similar cases, all alleging a lack of accessibility.

While I am in full support of pursuing issues through legal means IF ALL OTHER ATTEMPTS TO RESOLVE ISSUES FAIL, I do not support this shotgun approach to demand change. I have to wonder what the real motivation is in all these cases.

As you know, I recently started a new website titled www.ustooplease.com. I purposely added the word ‘please’ to that web address. And as I mention on that website, I truly want to raise awareness about accessibility and inclusion. I share all my observations on that website with the businesses I review. I offer a list of resources to help those businesses become more accessible and inclusive.

I believe communities will begin to welcome everyone when everyone works together to realize true inclusion.

Like a dog that is beaten every time it urinates in its owner’s house, it will eventually become housebroken. But the dog will never truly be a part of that owner’s family – it will remain an animal that is continually beaten to achieve the owner’s goals.

I don’t want businesses to make changes for accessibility and inclusion because they are beaten into doing so. I want their decisions to be based on the realization that an inclusive community is a true community.

My website is www.ustooplease.com. Ms. Payne’s should be www.ustoooriwillsueyou.com.

(I searched and searched for Ms. Payne's and her organization's website but could find nothing. Nor could I find a telephone number after almost an hour of searching the web.)

YES, YES, YES!!

From the Richmond Times Dispatch this past weekend:

"In a 20-page assessment of Virginia's care for the disabled released Friday, federal investigators detail hundreds of mentally and physically challenged people languishing in state facilities, subject to harm and neglect.

"Virtually no one who has been institutionalized long-term … ever leaves," one section of the report states, referring to residents at the sprawling Central Virginia Training Center in Lynchburg."

From CNBC, also this past weekend:

"Virginia violates federal law by needlessly institutionalizing people with intellectual disabilities and failing to provide adequate community-based treatment, the Department of Justice said in a report made public by Gov. Bob McDonnell on Friday."

Virginia has an extremely long waiting list for community services. Currently, 6,400 people are waiting, including nearly 3,000 identified as having urgent needs that could result in them being institutionalized.

Virginia's governor has 49 days to respond to the Justice Department or face a federal lawsuit.

This is huge - and about damn time.

Good News Friday

It's been a rough week at our house. Both my oldest son and I have pneumonia - Ashley is recovering from an ear infection - and there just hasn't seemed to be enough time to complete even our normal activities of life. But, Friday is here, along with some rest, some couch time, some fun outings, and time to recharge our batteries.

These good news stories below, shared by my dear brother and some special friends, will go a long way towards helping us recharge. Maybe they will help you also. Enjoy...

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How To Begin?

Are you the parent of a teen with significant disabilities, or do you provide services and support to that teen? If so, I need your advice.

It’s transition IEP time for my Ashley. Although technically my school district and I should have been talking about transition already (Ashley is going to be 16 years old next month), I was too focused on her moving to high school and receiving appropriate educational services. But now it is time, and I honestly am not sure where to start.

I mentioned last week that I was very pleased with the IEP and transition planning for my 20 year old daughter, Jessica. But Jessica’s disabilities are more commonplace than Ashley’s. Jessica fits into a model transitional approach and Ashley does not.

Ashley, as you may know if you have read my blog previously, is deafblind. She also has a seizure disorder, and her seizures are not completely controlled by medication. She still has 2-3 seizures a day on a good day. She approaches life with unbridled exuberance and doesn’t mind sharing her opinions, likes and dislikes with anyone.

Throughout elementary school and middle school, my school district underestimated her abilities. High school appears to be different. She has teachers who care and believe in her, and I truly think they want a good transition plan as much as I do.
But how do we get there?

So here’s where I need your advice. What approaches to transition planning for a teen with significant disabilities have you seen work successfully? What were the pitfalls along the way? And most importantly, is your child or the child you support happy with where he/she is in life post-school?

Thank you in advance for any help and advice you have to offer!

Special Exposure Wednesday

This week I'm not sharing one of my photos. Rather, I am sharing the art of Pete Eckert, photos by a man with blindness. Enjoy...

| Artists Wanted | In Focus : Pete Eckert (Lo-Speed) from Artists Wanted on Vimeo.

AGNES

(Photo by C.J. Gunther for the New York Times)

There was a great article in the Monday New York Times titled, In A Graying Population, Business Opportunity.” Being about three weeks past my hair color appointment and with gray hair emerging, I decided to read it.

Seems some researchers at Massachusetts Institute of Technology have devised a special suit to simulate what it feels like to be 74 years old. The article's author, after donning the suit, discusses the difficulties of getting out of a car and walking up a set of stairs – examples of things people of a certain age face every day.

The suit is an Age Gain Now Empathy System, affectionately known as AGNES. As the author, Natasha Singer, writes:

At first glance, it may look like a mere souped-up jumpsuit. A helmet, attached by cords to a pelvic harness, cramps my neck and spine. Yellow-paned goggles muddy my vision. Plastic bands, running from the harness to each arm, clip my wingspan. Compression knee bands discourage bending. Plastic shoes, with uneven Styrofoam pads for soles, throw off my center of gravity. Layers of surgical gloves make me all thumbs.

Ms. Singer has done an excellent job in the article of discussing business opportunities for marketing products to the graying population. Such marketing has been largely ignored until now, but with baby boomers set to take over the world (we wish!), businesses should no longer ignore the financial boon just waiting for the taking.

I think it would be well worth your time to read the article. Now I’m going to go take my AGNES suit off.

WHAT?? I don’t have an AGNES suit?? Well that stinks, doesn’t it?

Keep 'Em Dreaming

So what was your favorite Super Bowl Commercial. Here's mine:

Finally

I don't know if my school district is getting easier to deal with or if I am giving up the battles...or something in-between. But for today, I am going to go with the thought that the school district is improving.

The IEP meeting for my oldest daughter, Jessica, was held Thursday afternoon. Since Jessica will be 21 years old this year, we're in the home stretch of the educational process and moving into the transition process full throttle. I've had and actually still have issues with the agency that will support Jessica's employment efforts in the future, but I must say that the school district and the IEP team really stepped up to the plate today.

The IEP is good, really good and addresses all my concerns about transition. Though I didn't ask for an assistive technology eval, one was conducted, and the AT representative had a whole bunch of great ideas. And get this - Jessica is getting an IPad provided by the school district! She will use it to develop a calendar, practice some educational skills, and use it to record important information.

Everyone on the IEP team seemed to care about Jessica and what her future holds, and they really listened to my concerns and suggestions.

Why couldn't this have happened 12 years ago, and for all my other children with IEPs? I can't go back and change anything in the past, so I am going to just relish that things are going well now. If I dwell too much on how much further along my children could have been educationally, I will miss out on the enjoyment of the positive things that are happening now.

So thank you IEP team, thank you for proving that we can all care about our children's future.

It's a Launch!

Many years ago, I would go shopping or out to a restaurant without a thought about accessibility. I would walk up curbs without thinking about people in wheelchairs. I would get annoyed with store aisles that were so packed with merchandise that I couldn’t find what I wanted. But, it would never occur to me that some people wouldn’t even be able to move around that same store. And like a lot of other people, I would stare at a blind person using a cane, but I wouldn’t ask if I could assist or direct them to the checkout register.

All that changed when I adopted four children, two of whom are in wheelchairs, one who is blind, and one who doesn’t handle too much sensory input very well. Although those adoptions began 14 years ago, I’ve not seen much progress related to accessibility in my community or other communities my family visits.

So I decided to create a website as a way to raise awareness about accessibility and inclusion. My new site is called US TOO PLEASE.



As my children and I travel through our community, I will review the places we visit. I will write about how physically accessible they are – how welcoming they are to people with disabilities – how inclusive a product or service they offer – and whether or not they make reasonable accommodations for people with disabilities.

I do not mean US TOO PLEASE to be an exercise in bashing. I will share the good as well as the not so good, but I will always let each establishment know the results of my review. I will offer to publish any comments they may have, and I will inform them of resources that are available for improving their accessibility and inclusive practices.

My sincere hope is that this endeavor will help to improve my community, as well as all communities, for people with disabilities. I want to leave a legacy of inclusion for my children. I want to make a positive difference in the lives of all people, especially those with disabilities.

Please visit my new site and let me know what you think! And if you have any specific places you would like me to review, just send me an email.

p.s. Having a new website does NOT mean I will devote any less time to this blog - my baby that has allowed me to find my voice, to make special friendships, and to keep me sane! I will still be writing here every Monday through Friday as always!

Special Exposure Wednesday

We live on the wild side! How many families do you know that would give their blind child a hammer and nails?



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

Change in the Air?

Ronnie received a very nice card in the mail last week from our county school's superintendent. I thought I must have been abducted by aliens and transported to another universe where schools really cared about their students.

The card said congratulations and had a personal note that said, "Keep up the SUPER work and effort." It was personally signed by Dr. Pat Russo, the Henrico County School Superintendent. Enclosed was also a copy of the article about Ronnie that appeared in the newspaper at the end of December.




I was very impressed that Dr. Russo took the time and cared enough to send the card. Dr. Russo is the third superintendent that my school district has had since my children started attending school. Neither of the first two superintendents would have even thought of doing something as nice as sending a card.

So, kudos to Dr. Russo, and here's hoping for some more positive change in the school district!