A Hot Cup of Coffee

I so wish that all of Ashley's school years could have been as positive as high school has been for her. I credit Ashley's teacher, Mrs. Marsh, for all the good things that have happened and continue to happen for Ash in school. Here is a link to just one example of those good things (Ashley can be seen close to the end of the video clip):

The Tucker High School Coffee Shop

Thank you, Mrs. Marsh, for caring and for making a difference in Ashley's life and the life of all your other students!

Spokes Rule!

We traveled to Smithfield, North Carolina this past weekend for Ronnie's wheelchair basketball tournament. The weather was beautiful. The traffic was light. And the Sportable Spokes (Ronnie's team) won two out of their three games!!








Way to go, Spokes!!!

The Glorious Winds of Change!

History was made in my home state of Virginia yesterday - history that will improve the lives of people with disabilities. Virginia has been ranked 47th out of 50 states in service to people with disabilities. The US Department of Justice believed change was needed and sued the state. A settlement agreement was reached and it marks the beginning a real, substantive change. A huge, huge thank you to all the advocates who made this all possible!



You can find the story all over the national press, but this from CNN sums it up very well:

Washington (CNN) -- In a closely watched case with implications for other states, Virginia reached a broad settlement with the Justice Department Thursday on protecting the legal rights of people with developmental disabilities, both physical and intellectual. The agreement also will resolve violations of the Americans with Disabilities Act.

Virginia agreed to provide an estimated 5,000 citizens with community services that will allow them to live in community-based settings, including family homes, rather than being institutionalized.

The Justice Department's Civil Rights Division is pressing states to comply with a Supreme Court ruling that says the developmentally disabled have a right to receive services in the most integrated settings appropriate to their needs.

Justice officials say the case is particularly relevant to ongoing investigations in Oregon, Florida and Utah. In addition, the Justice Department has issued its findings but not yet reached agreement with officials in New Hampshire, North Carolina and Mississippi.

The Justice Department has reached agreements previously with Georgia and Delaware.

Virginia has allocated $60 million to help integrate the individuals covered, and the federal government will match that with Medicaid waivers, according to Assistant Attorney General Thomas Perez, who announced the settlement.

Perez, an Obama administration appointee, praised Republican Gov. Bob McDonnell and other GOP leaders in Virginia for their cooperation in reaching the agreement. Perez says he is confident the agreement to minimize the institutionalization of individuals will save Virginia money in the long run.

The settlement follows a federal investigation of Virginia's system that found the commonwealth had ADA violations.

And this from Assistant US Attorney General Tomas Perez:

Virginia is a state with strong and committed advocates who have long been pushing for improvement of the Commonwealth’s developmental disabilities system. Throughout our investigation, we met with stakeholders across the Commonwealth, to learn about what is and is not working for people with developmental disabilities. We heard their problems and concer...ns, and ideas for addressing them, as well as their successes. We heard from families who are barely hanging on while their loved ones sit on long waitlists for community services and from self-advocates wanting more opportunities to work and live independently. We heard from the families of persons now living in institutional settings who worry whether the needs of their loved ones can be met in community settings. We also met with some individuals, including some with complex needs, who are being successfully served in the community. Our agreement draws on the input from these critical stakeholders about how to best meet the needs of all Virginians with developmental disabilities. Continued collaboration with and input from these stakeholders will be a critical part of the implementation of the agreement.

Hello, My Name Is....

An incredible Dad that I know through Facebook published a picture yesterday of a business card he ordered for his severely disabled daughter. Here it is:



We've all dealt with the stares from people who don't understand or are curious about our children with significant needs. According to this dad, Roy:

"The card does two things. There's an icebreaker to remove that awkward feeling when people first meet a disabled person and an easy and private way to learn all they want to know. The website also gives them several ways to stay in touch."

And he provides an example from something he personally experienced:

"At the grocery store there were two young girls who were quite curious about Emma. The mother, however, was embarrassed by her daughters and tried to quiet them. I gave them the card and that's all it took for mom to get on board too."

What do you think of this idea? I'm liking it...a lot. Do you think it might help educate and raise awareness? Would you be comfortable handing out such a card to strangers?

Special Exposure Wednesday

Cooper is growing at an alarming rate! He has gained an average of 2.5 pounds a week since we brought him home on Christmas Eve. Today he is 12 weeks old!



Here he is the day he joined our family!

Not A Skill Set I Want

Being the parent of a child with special needs, especially when some of those needs are medical and life threatening, is a difficult job. There is absolutely no doubt that we need help sometimes. We need nursing care for our children – we need specialists like neurologists, gastroenterologists, therapists, and such – we need for our friends to sometimes help ease the burden by bringing us a meal, helping with our other children, or even just being available to lend an ear. But ultimately, the care of our special needs children, as long as they reside in our homes, falls to the parent(s). We have to learn to cope for those times when we don’t have help. We have to know how to survive the long sleepless nights, the lack of time to shower, and how to care for everyone else in the family. And 99.9 percents of the parents of special needs children that I know (and that’s a whole lot) do know how to survive, how to cope when support systems fail. But recently I have met a parent who chooses not to cope without support.

This particular parent is married and has two children – one with special medical needs and one without. This parent has a LOT of support – nurses, grandparents, friends. Neither parent works, yet they live in a nice brick home with a large yard. They are currently working with a contractor to add on to the house. The mother regularly has her hair colored by a professional and has manicures and pedicures very frequently. She has an active social life that doesn’t include her children, and shopping is one of her favorite pastimes. They never lack for food, furniture, or entertainment options.

How does this particular family make all this happen? Primarily through the power of Facebook.

Each day brings a ‘request for prayers’ for a particular need. This morning’s prayer request involved hoping Mom can make it through the day without the nurse who happened to call out sick. Sometimes it’s comments like, “haven’t been shopping in 3 days – going through withdrawal” or “my nails look so bad that I just don’t want to leave the house”. Those comments usually draw someone to meet the need.

Your initial thought might be that I am jealous of this mom. You would be totally wrong. I also lack for very little but it is because I ensure my family’s needs are met. I’m not fond of always having people in my house, be they nurses, therapists or friends who visit unannounced. It’s just not in my nature to ask, ask, ask of others. I am the giver not the taker. And it has never once occurred to me in my life that I had a right to rely on other people to make my life what I want it to be. So no, I am not jealous.

What I am is embarrassed. I can understand when people of a certain political party don’t feel Medicaid and other such programs are necessary if they happen to meet or know this family that I just described. I can understand when politicians say we should rely on friends and our church to help meet our needs and therefore don’t need social programs to help us. Thing is, what this particular family has honed to a fine art is not the norm, is not even close to the norm.

This mom has a skill set that I do not wish to have. I seldom talk about religion, my beliefs or my faith on this blog. But today I am making an exception. Long ago, when I first became an adult and then later a mother, I chose a particular passage of the Bible as my guiding light. It is Proverbs, Chapter 31, verses 10-31.

Look it up and you will understand why the actions of this family and this mother bother me so much.

Falsely Accused?

I believe one of the biggest fears of parents of children with disabilities is being falsely accused of child abuse or sexual abuse of your child. This is an even bigger worry for parents of children who are non-verbal, or single parents raising children of the opposite sex.

Check out this story posted by Roy Ellis, a father to 11 children - A Dad's Nightmare Over False Sexual Abuse Charges.

I, too, have been accused of child abuse. My now 21 year old daughter honed the art of false accusations. Jessica was (and still is to a degree) a child who would erupt in outbursts of rage and aggression. Although she did frequently and seriously hurt others (she broke two of my ribs during one of her rages), she would hurt herself also. Because of her hemiplegia she has limited use of her left side and during her rages, she would lose her balance and fall. Many times she would go to school or daycare and tell the staff that I was the one who hurt her.

The feeling of having child protective services show up at your door is beyond words. I was fortunate because I had a large support group who could speak to what really happened, and most importantly, child protective services believed my support group and me. But many many parents are not believed.

What about you? Have you had this experience? Has someone put words into the mouth of your child, or witnessed something they didn't understand? Have you been accused and had to defend yourself? How have you survived this?

International Day of Acceptance

Today is the INTERNATIONAL DAY OF ACCEPTANCE - January 20, 2012

Just what is the International Day of Acceptance? It is a day to achieve social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

3E Love is a social entrepreneurial awareness experiment.

Join the movement at
http://www.dayofacceptance.com

Wear your heart on your sleeve on January 20th.

Tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.

To our supporters: Join us in telling the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else - you also have a role in our culture and life. And you can have an impact on the future if you demonstrate your acceptance to others.

Let's join together to:
Embrace diversity. Educate your community. Empower each other. Love life.



Start the conversation of acceptance on January 20th with the International Symbol of Acceptance: Wear a t-shirt. A sweater. A hoodie. Use a bag. Pin a button to your jacket, chair strap or backpack. Ink a temporary tattoo onto your hand. Draw it on if you have to! Ask your friends to join us as well. And for a final touch change your profile picture on Facebook to the symbol. Get people talking!

When a person asks about the symbol, "What's that mean?" Well now it's your turn to tell them your story or what its significance is to you.

And maybe next time they will look at the antiquated traditional symbol a little differently......

Join the movement at
http://www.dayofacceptance.com

Not Wimpy At All

This is a company that 'gets it'! Makes me want to move to South Africa!

Have a wonderful weekend!

Wheelz

This has got to be one of the coolest kids I have ever seen! Funny thing, I could easily superimpose Ronnie's face over this kid's face because I can see Ronnie begin driven in exactly the same way. I'm just hoping Ronnie doesn't visit my blog today because I am not ready for a heart attack!

Arline

I found this video on Dave Hingsburger's blog, Rolling Around In My Head, and knew after the first few stanzas of the song that I also had to post it. Legislators in my state are very slow to address institutionlization even as the Justice Department threatens a lawsuit. Perhaps I should email this video to all the esteemed ladies and gentleman who purport to speak for all Virginians.

Listen very carefully to the words, and then say a prayer that one day there will be no more institutions...

Knowing The Difference

Ronnie loves the Three Stooges. He loves anything where people fall down, trip, get hit, stumble, etc. He will burst out laughing whenever he sees that on TV or in person.

One of our favorite interpreters told me that such is common among people who are Deaf. She said that almost every Deaf person she has ever known finds physical acts such as those very funny.

I get it but there are some times that Ronnie's laughing seems really inappropriate.

Falls are not always meant to illicit laughs. Stumbles are often accidents and the person doing the stumbling doesn't like being laughed at. A person fainting usually finds nothing funny about their situation. But it seems Ronnie can't tell the difference sometimes - or at least he isn't distinguishing when it is appropriate to laugh and when it's not.

I have often corrected him when his laughter isn't appropriate, but he seems hurt when I do that. (I don't do it in front of anyone.) I'm really not sure he is getting the message.

How do I help him distingush a pratfall from an embarrassing or hurtful fall? Any suggestions?

Hard Work

Cooper BEFORE puppy training class....



Cooper AFTER puppy training class...!!!!

Prepare to be VERY Angry

CAN.THIS.REALLY.BE.HAPPENING???

I know we all have issues with society's acceptance of our children, but THIS - THIS???

As a community of parents who have children with disabilities, we must NOT accept this. We must mobilize - make calls - write letters - contact the press - WHATEVER IT TAKES!!! Here is the hospital's phone number: 215-590-1000.

No transplant because Amelia is mentally retarded

And here is a link to a petition to sign. Please do it today!

TGIF!

A Challenge For You

The video below has been making the rounds of Facebook the last couple of days, and it is absolutely wonderful. Maddox and her Mom say so much without uttering a word. And through their efforts, more and more people may come away with a new understanding, a new acceptance, a new view.

So here's my challenge. I think all of us parents of children with disabilities need to produce a similar message - be it through video or pictures. Let's begin to educate others in ways that we haven't used before. Let's grab the attention of this generation of Facebookers/Bloggers/YouTubers/and Tweeters. I know we have all blogged and tweated our stories, but let's see if we can increase our audiences and include people whose lives have yet to be touched by disability. Let's model it after Maddox's message and create a library of information for the digital world. Let's use the tools that the world is using, and let's spread our message of understanding and acceptance.

I would be glad to coordinate the effort, help compile the library, and then market our stories to people who need to see them. What do you say??

Special Exposure Wednesday

Ronnie is enjoying his birthday breakfast from McDonalds! Happy 17th, son!

Speaking of Group Homes

Almost every weekend, during outings with my family, I am asked if I run a group home. I guess it's understandable. My kids are almost all adults now - ages 21, 21,19, 17 and 16 - and other than Chip, my birth child, none of them look like me. In fact, none of them look like each other. Corey is Native American, Jessica is Latino, Ronnie is African American, and Ashley is of Italian heritage. Chip and I sport a blond, German look.

The first time I heard it, it bothered me, though I couldn't say why. Then I started thinking that if folks thought treating young soon-to-be adults with respect, love and caring was what group homes did, I shouldn't disavow them of that notion.

Of course, my years of experience with group homes is anything but what I just described. See Monday's post. But I want people to expect and believe that group homes can provide a positive, loving environment for people with disabilities. I want neighbors not to worry when a group home is planned for their neighborhood. I want families to feel peace when their loved one makes the decision to move into a group home. And most importantly, I want people with disabilities to be happy living in a group home, ensured of their safety, in a warm caring environment that is bright and sunny and clean. And I intend to make that happen.

I'm only a few years away from retirement from my career government job. When I do retire, I plan to transform my current, handicapped accessible home into a group home and prove that it can be done the way I described. I don't think it will be easy, but I think it will be worth the effort.

What do you think?

I Want The Truth

I got the call from the school nurse at 2:15pm Friday. They told me Jessica was on her way to the hospital in an ambulance. And here's the reason they gave me:

Jessica was late getting to school on Friday. Once there she was very, very, very sleepy - so sleepy that she fell asleep in the restroom, and started choking at lunch because she fell asleep while eating. The teacher had a rough time rousing her. During one of her awake periods, Jessica said she had gone to the dentist that morning and the dentist gave her medicine.

Thing is - Jessica did not have a dentist appointment, and to top it off, Jessica doesn't make up stories. Never has. Never tells a lie. Her brain is just not wired that way. Her teachers in elementary and middle school found it impossible for her to concoct a story for reading class even when she was given the start of the story. She has never engaged in imaginative play. She does, however, repeat verbatim things that people tell her.

I was told that Jessica's group home manager was following the ambulance to the hospital, and I told the school I was headed there also. Since I was at work downtown, it would take me about 20 minutes to get to the hospital. When I arrived, there was no group home staff anywhere to be found, and no one had been there.

Jessica was indeed sleepy. She barely opened her eyes to tell me hi and then she nodded off again. Usually a person that requires four strong men to hold her down for a blood draw, she didn't even whimper when the nurse stuck her. This definitely was not Jessica....

I continued to try tracking down the group home manager. We needed answers to questions about how Jessica's previous night had gone, what had happened before school, and if anyone else at the group home was sick. But I couldn't get her. Finally a strange man popped into the room and said he was a group home staff member. But, he had no answers to our questions.

The ER doc had a cat scan done. I was worried that Jessica's shunt may be failing, although her symptoms really didn't support that. The cat scan agreed - it was not a shunt issue. Fortunately, the ER doc astutely ordered a tox screen - a test to check just what Jessica may have been given or ingested.

Apparently, she was either given too much of her meds, or she was given meds that belonged to another group home resident. But the group home staff refused to accept that. They said she was fine and they had no idea what the doctor was talking about.

Jessica was finally discharged, and I have left a message for the director of the company to contact me. Although I am sure there is no written record of the extra meds, just the fact that someone told Jessica to say she went to the dentist convinces me that the person knew something wrong had occurred.

I'm not sure where all this is going to go, but I will keep you posted...

Pressure Building

Peer pressure is like a nasty virus that you just can’t get rid of. Chip, Corey, Jessica and Ashley are free thinkers and have never really had any major problems with peer pressure. But Ronnie is a different story. He seems to let it drive his every choice and decision.

On the first day back to school after the holidays, I mentioned to him that his backpack was a mess, stuffed full of old papers and ‘junk’. He said that everyone else’s was like that also.

During the holidays, he asked for a set of headphones for his iPhone. I looked at him as if he had lost his mind, and he just said that his friend at school had them. I gently reminded him that he was Deaf. He said his friend didn’t hear well either. I gently reminded him again that he was DEAF! He didn’t seem to care – all that mattered was that he looked like his classmates who have headphones attached to them at all times.

Those are two minor examples, but I am currently dealing with something more disturbing. Apparently one of Ronnie’s ‘friends’ told him that he shouldn’t eat too much or otherwise he would get fat. Since that comments, getting Ronnie to eat anything has been challenging.

Ronnie is a skinny kid, and he is very active. In addition, his disabilities require that he eat a healthy and very specific diet. He has always been a junk food junkie but I was slowly making inroads into healthier eating habits for him until….

I know, or at least think I know, that being a kid in a wheelchair, who can’t walk, who is Deaf, who must rely on medical interventions for even the most basic of bodily functions can’t be a fun state of affairs. I try really hard to be sensitive to that, and as with all my children, make sure that he takes part in activities that reinforce his abilities rather than his disabilities.

And the last thing I need is some other kid telling him to stop eating!

So what would you do? How would you convince him that not eating is not an option, and even more, how would you help him move past the whole peer pressure thing?

Costs Adding Up

Is it just my imagination or is Medicaid paying for fewer and fewer medicines these days? I know that each state administers Medicaid differently, but I have been surprised over the last 6 months or so at denial of medication payments. And these are meds that previously were paid for.

Because my children with the most significant special needs were adopted, they have automatically received Medicaid coverage. I have also added them to my work insurance policy, but it pays for very little. And, Ashley has reached her lifetime maximum under my work policy. So we rely very, very heavily on Medicaid to cover any medical expenses.

First it was one of Ashley’s medications, then another. Then this month alone, two of Ronnie’s which had previously been covered were denied. So far, the cost of those denied meds hasn’t been excessive if you look at them individually. But, when you start adding them all together, the budget takes quite a hit – a hit which will be repeated every single month.

I’m not sure if there is any sort of appeal process to get the medications covered again, but based on my past experience appealing another Medicaid-denied service, the process is difficult at best. And last night, well past 9pm, when I was at the pharmacy and the pharmacist was on the phone with the Medicaid office, there seems to be very little interest on my state’s part at even addressing this issue.

You know, this past summer, I worked really hard with Ashley to discontinue two of her medications. Perhaps that was a good thing considering this new lack of coverage. But, there are some meds, seizure meds for example, or life-sustaining kidney meds, that we just can’t discontinue.

One would think that between two insurance policies I could get medicines at least partially paid for, but that is not looking to be the case.

Special Exposure Wednesday

Corey, my handsome soldier boy - also a little bit scary with that big gun!!

Light My Fire

OK, I'm about to step back on my soapbox again. Let's talk a bit about the sexist attitudes of some restaurant owners and in addition, the complete disregard for wheelchair users at those same restaurants.

My younger kids were back in school today, but I had another day before having to go back to work. Chip is still on college break, so he and I decided to try a new restaurant near where we live. The name of the restaurant is Halligan's, and the one near us is actually the second one of these restaurants. The first Halligan's opened in our city's downtown area back in 2008, but the one we visited opened just a month ago.

The Halligan's website states that they, "capture the essence and mystique of what it truly means to be in the fire service. The restaurant is a virtual museum and tribute to past and present firefighters of all jurisdictions. We have accomplished this by creating an atmosphere that is comfortable to all members of the fire service as well as an awe inspiring ambience for the general public."

Further, the website introduces the owner as a current county firefighter, someone with 20 years of service who decided in 2008 to open his first restaurant. Sounds like a good plan if you believe the rumors often heard of firefighters being great cooks. And the food we had at lunch today was really good, some of the best I have had recently. I just wish two other very important aspects of the restaurant were not so bad.

First, what do I mean about sexist? Well, if I were a female firefighter I believe I would have a problem with the female serving staff dressing in barely-cover-the-butt khaki skirts. Everyone working in the restaurant dresses in an interpretation of firefighter uniforms. Everyone that is not female wears khaki pants, blue teeshirts, and red suspenders. But if you are female, you wear the microskirt, a tight teeshirt and the red suspenders. Yes, it's a bar, but still, the owner doesn't have his male servers in tight pants and even tighter teeshirts. Again, if I were a female firefighter, I don't think I would choose to support the restaurant.

Secondly, there was a complete disregard for the accommodation of wheelchair users. Every, and I mean EVERY table in the place was a high bar-style table. Absolutely impossible for a wheelchair user to sit at and eat or drink. I asked the server about the tables, and she said that the owner "didn't think about that until some patrons showed up in wheelchairs."

Really...you've been a firefighter for 20 years...a firefighter that more than likely had to help people with disabilities over the years, and you didn't think about that when opening your restaurant??? Or just discount the fact that you are a firefighter. How can anyone open any sort of establishment these days and not think about people with disabilities? It boggles the mind.

And one more question - did the building inspector not notice the lack of accessibility, or is it not their job to notice such things?

So Halligan's, dress your servers appropriately and remember that not everyone can lift themselves into a three foot high stool. You know, looking at your picture, Mr. Owner, and seeing you in the restaurant today, you might yourself be looking at disability in the near future. What then? Will you finally provide a welcoming establishment for all people?

Reality Check

Well, my precious two week vacation has drawn to a close. The kid's backpacks are ready, and the lunches have been packed. Our lives are back to the school and work routine tomorrow, and I have to admit that I am sad about that.

We had a wonderful holiday break. We visited museums - did some shopping - had family join us for Christmas celebrations - and played with our newest family member, Cooper.

We checked off four doctor appointments, and we ate way too much food that wasn't healthy. I cleaned the house after all the decorations were moved back to the attic, and Chip and I even got a few projects done around the house.

My only complaint about the holiday break was that it was way too warm. I want cold weather, even snow and ice, for Christmas, but this year we had 65 degrees and ceiling fans running on Christmas morning.

All in all, it was a wonderful time! I hope that you and your families also enjoyed yourselves, and that Santa brought you what you asked for!

Now, I'll start turning on my alarm clock again and braving the morning rush hour! How many days until my next day off....????