Do Not Quit

It's been a rough week, and I needed to have someone tell me that giving up is not an option. This video did that. Hope you enjoy. Have a happy weekend!

The Honorable Delegate Abbott

On Tuesday, I wrote about the despicable comments made by one of our General Assembly members. The public outcry has been great, and as of Wednesday morning, over 1100 people had joined the Facebook group calling for Delegate Marshall's resignation.

We Virginia parents are not so naive as to think he really will resign, but I do believe our message is being heard by some at least.

On Tuesday, another of our state Delegates also spoke against Delegate Marshall's ignorance. I have included the full text of her speech below. It is very powerful and I pray that the other members of our General Assembly listened and heard.

Delegate Robin Abbott, I applaud you and respect you more than I can say.

MR. SPEAKER – I RISE FOR A POINT OF PERSONAL PRIVILEGE

Mr. Speaker, members of the House,

30 years ago today was a very joyous day for America. Do you remember why? 30 years ago today we were celebrating the MIRACLE ON ICE where the American Hockey Team won the gold medal at the 1980 Winter Olympics.

For me personally, there was other cause for joy …. It was the miracle of the birth of my son, Nicholas. I remember looking at him and in all senses he was perfect. Over the next several weeks, however, Nicholas was failing to thrive. I learned that he was missing over three fourths of his brain and that he had no vision. His prognosis was not good. The doctors told us that if Nicholas survived he would never walk, talk, or even know that I was his mother.

So today, Mr. Speaker, I speak on behalf of all the parents of disabled children.

As a freshman member of this body, I look to the more senior members to help me do the best job possible of representing the people who have elected me in Newport News and James City County.

Because this House has demonstrated concern for individuals with disabilities, particularly individuals with intellectual and developmental disabilities, I feel comfortable in sharing with you what life is like for a parent of a child with severe and profound disabilities.

When we realized that our child has disabilities we could never have conceived of the joy that he has brought to our lives. But it was not easy. It was not at all easy to hear the words about our child and even more, it was torture to have to give up the dreams we had for him – dreams of activities together, learning together, school, sports, friends, hobbies, career – in short, all the dreams each of you has had for your children.

Oh, we were told that a facility might answer our needs, but we love Nicholas and could not think of having him any place other than with us. With the assistance of our educational system, we were able to balance his needs, our careers, and a life for our family.

There were several occasions during Nicholas’ early years that gave me strength. I remember vividly the day he was trying to sit up all by himself. He was two and a half years old. He worked and worked and after two hours, he finally made it. He was out of breath, but the biggest smile of accomplishment came over his face. He knew what he had just done was BIG. I was crying tears of joy. One would have thought he had just won a gold medal. He certainly deserved one for his perseverance on that day. The significance of that event was that it gave us hope – you see – the general rule is that if a child can sit by age two, the more likely the chance he will walk.

Mr. Speaker, members of the House, imagine if you will, trying to teach your child how to play a simple game of patty cake. Over and over again every day for five years. You think it is hopeless — that he will never learn such a simple task — And then one day, out of the blue, he patty cakes back and all of a sudden you realize your efforts were not in vain. You realize that as long as your child is giving 150% —you cannot ever give up.

Just as any parent, I wanted the best for my child and worked hard to make it happen. Fortunately, we were not alone and sought support through the schools, the medical professionals, and the community. Every activity, every mobility that any of us take for granted must be provided as assistance for Nicholas.

Every activity, regardless of what it is, takes longer and significant planning. Due to a seizure disorder, Nicholas can never be left alone. And in order to have some time for my husband, our other three children, and our careers, we needed qualified care providers to cover after school care. It wasn’t easy finding care givers and when we did, it was always at a premium cost.

Suddenly one day, the the time came that my husband and I both had feared. Nicholas grew up. He was twice my size and I could no longer lift him and tend to his needs. My husband was diagnosed with heart problems and had to undergo quadruple by-pass surgery. It was time to find a place for Nicholas – a place where he would be safe and secure and where his needs would be met.

Fortunately for us as a family, we were able to receive a Waiver slot for Nicholas, which changed his life and ours in many ways. For the first time in 24 years, I could go to the store and pick up a carton of milk without having to worry about who was home to be with Nicholas. But the biggest relief was that the transition for Nicholas would be over time and not an emergency placement. This is not the case for many families who often wait decades to find the peace of mind that their loved one will be taken care of. Today, Mr. Speaker, I understand there are over 4800 people waiting for waivers. That number grows every month. We can do better — we must do better.

I still have dreams for Nicholas. I want the comfort of knowing that, if something happens to his father or to me, he will be secure in his living arrangement. My husband and I want to keep our jobs as tax-paying citizens, secure in the knowledge that Nicholas’ day program provides activity for him in a safe environment and he has safe transportation.

Wouldn’t each of you want these same things for your children? To be happy and productive in school, to play with other children, to develop obvious or hidden talents, and to be proud of their achievements.

I have already shared a few of Nicholas’ achievements, but I would like you to know that against all odds, Nicholas did learn to walk at age five, to feed himself, and to assist with self-help skills such as bathing, washing his hair, shaving, and brushing his teeth. And I am very proud of these achievements because these small accomplishments enabled him to stay at home with his family for many years.

But his greatest accomplishments, for which he will never know are:

• Teaching me patience

• Teaching me to love, unconditionally

• Teaching me to understand the importance of stopping and smelling the roses on my life’s journey

• Giving me the courage to be his voice — to fight his battles, and to fight for what is right

• In sum, suffice it to say that for a child who has never spoken a single word, he has taught me more than any professor or other person ever will. He is truly the wind beneath my wings.

For these gifts, I am thankful to my son.

When I was appointed to the Hampton-Newport News CSB Board of Directors, I welcomed the chance that I would have as a citizen to help improve the lives of individuals with disabilities, many of whom I now represent. As a former board member and as a parent, I have witnessed and experienced the excellence that the CSB brings to the community and to its citizens, particularly those with disabilities.

As a legislator, I am gratified that the House crafted some relief from the action in the Introduced Budget and proposes to lift the waiver freeze. Some of the dire actions remain in the budget and it is critical to remember that when services are reduced or eliminated, not only the individual with the disability is affected but the entire family. That family could be your family, your neighbors, your friends, or, in the future, perhaps even one of you.

Mr. Speaker — I know for a fact that Members of this Chamber have sought and received services from your local Community Services Board for your constituents in need of Waiver services. The challenges that my family has faced are not unique to us, but are shared by many of your friends and associates.

Virginia’s Medicaid Waiver public policy strategy was created almost 20 years ago as a compassionate and equally important, fiscally conservative alternative to costly institutional care. We need to sustain this important public policy safety net known by all of us as the “Waiver slot” system of care.

My hope is that no family member will be forced to choose between a job and taking care of a family member because services are reduced.

My hope is that parents don’t have to pray that the good Lord takes their child before them so they have peace in knowing that their child will not suffer in their absence.

My biggest hope is that no one has to wait decades to receive a waiver.

Mr. Speaker — I was disturbed to learn this week that a member of this body believes that disabled children are somehow punishment or deserved by the parents. I hope this view is not shared by other members of this Chamber. More important than words or rhetoric are the actions we take.

As a result of the economy, my family, like so many others, will be called upon to provide more continued support for my son than before.

Let us intend that the action we take in this Chamber this week on our budget is only temporary —- and that we can and will build back services that are so desperately needed by the most vulnerable of our citizens.

More importantly — Let us not betray the trust that Virginia families have placed in us. Above all, let’s keep our promises to them as soon as we can.

Thank you, Mr.Speaker and members of the House for this opportunity to share my story with you today.

Special Exposure Wednesday

Sometimes you just gotta get really silly to make feeding therapy work. Well, that and wearing a mac and cheese shirt while you eat mac and cheese. Miss Amy and Ashley need to take their show on the road, don't you think?!



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

This Great (?) Commonwealth

This is turning into a banner year here in this glorious Commonwealth in which I live. First, the state's budget is in dire straits - there's no disputing that. But our legislators, in their infinite wisdom, have decided to balance that budget by cutting health care for the poor and disabled and reducing education funding.

It probably comes as no surprise that most of the legislators are good old boys whose children are grown and healthy.

Today, however, I discovered the icing on the cake.

State Delegate Bob Marshall of Manassas says disabled children are God’s punishment to women who have aborted their first pregnancy.

Now I understand. God has spoken and His apostles are just following His commands. Or so they think.

Jerks - big stupid jerks.

****UPDATE****

In this morning's Richmond Times Dispatch newspaper, Delegate Marshall claims we misunderstood him. Too little, too late, Bob...

Facebook group calling for Mr. Marshall's resignation

Virginians Against Bob Marshall's Ignorance

Petition Calling for Delegate Marshall's Resgination

Sunday at the Park(ing lot)

The weekend was beautiful. The snow was melting - the sun was shining - the temperature was in the 50's - pretty much a heat wave given how our winter has gone this year.

So the urge to get out and enjoy the nice weather was overwhelming. Unfortunately, the money was not. So, what's a family to do? Why, go to the parking lot and throw crackers to the seagulls, of course!



I grew up very near the beach, and one of my fondest beach memories is of feeding the seagulls. There would be one gull nearby, but as soon as I threw the first crust of bread in the air, a score or more of gulls would immediately appear.

Several years ago when we took a trip to the Outer Banks of North Carolina, Ashley met seagulls for the first time. She calls them beach chickens, and today she seemed just as thrilled to see them fly just feet from her as she did that first time.

It was a very nice moment on a beautiful warm winter afternoon!

Affliction Day

This article below appeared in the Mansfield News Mirror, a Texas newspaper. Before reading it, consider the definition of 'affliction':

af·flic·tion   /əˈflɪkʃən/
–noun
1.a state of pain, distress, or grief; misery

I swear, if my school district ever wants to have an 'affliction' day, my child will not be the one that is afflicted. (Notice the non-blindfolded student laughing at the student pretending to be blind in the picture to the right.)

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Students Spend Challenging Day

The students at Mansfield High School have experienced learning on a whole new level. The past few days the students in Robyn Russell's Teen Leadership class have been preparing to have an affliction day. The students were blind, deaf or mute. They had to live one day the way a child or adult with disabilities would in an educational atmosphere.

The students were given tasks they had to complete with a partner who did not have a disability. One of the tasks was for each student to go down the hall and get a drink of water. Many of the blind students had their hands out to feel for walls and depended on their partner for guidance.

"I was very disoriented while walking through the halls," said senior Ryan Collins. "I have been walking these halls the last four years but as soon as the blindfold went on I had no idea where I was in the school."

Another activity was to color a picture of a tiger. First, the teacher asked the students to write their names on the paper. Most of them ended up being sideways or upside down. Next, they were given two markers and told to color a picture.

"I felt lost," said Shayla Blackwell, a sophomore. "I didn't even know what I was coloring let alone what color markers I had in my hands."

The students also had to complete a workout routine. The majority felt dizzy and embarrassed. All the students believed even in the short period of time they were disabled that one of their other senses became stronger.

Affliction day gave students a small insight into the life of a disabled individual. The tasks they completed were simple to those without disabilities, but they could tell that life would be much more difficult with a handicap. The students got to experience a few of the challenges having a disability creates, but there are many more such as discrimination in employment, higher insurance and for teenagers a social status that can be difficult to overcome.

Many of the students said walking in another person's shoes is the best way to experience their life.

Kick In The Gut or Just Another Character

You've all probably heard and read about the controversy over last week's Family Guy episode. But if you haven't, I wanted to share these selected writings from Patricia E. Bauer's blog. She has done an excellent job gathering opinions from both sides of the controversy. Take a few minutes to read through them, and then let me know your thoughts.

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Palin describes the show as a ‘kick in the gut’

From the New York Daily News:

Following a Valentine’s Day broadcast of Fox’s Family Guy that got laughs at the expense of a character with Down syndrome, former Alaska governor and Fox commentator Sarah Palin published a Facebook post saying the show had “mocked” her son Trig, who has Down syndrome.

Palin said the show, in which the character was labeled a “little whore” and a “poorly groomin’ Down syndrome girl,” felt like a”kick in the gut.” Her Facebook comment included a paragraph attributed to her daughter Bristol that begged for compassion toward people with disabilities and ended by calling the show’s writers “heartless jerks.” The text follows:

“When you’re the son or daughter of a public figure, you have to develop thick skin. My siblings and I all have that, but insults directed at our youngest brother hurt too much for us to remain silent. People with special needs face challenges that many of us will never confront, and yet they are some of the kindest and most loving people you’ll ever meet. Their lives are difficult enough as it is, so why would anyone want to make their lives more difficult by mocking them? As a culture, shouldn’t we be more compassionate to innocent people – especially those who are less fortunate? Shouldn’t we be willing to say that some things just are not funny? Are there any limits to what some people will do or say in regards to my little brother or others in the special needs community? If the writers of a particularly pathetic cartoon show thought they were being clever in mocking my brother and my family yesterday, they failed. All they proved is that they’re heartless jerks. — Bristol Palin”

(Ellen, the character with Down syndrome, was voiced by Andrea Fay Friedman, an actress who has Down syndrome.)

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Ellen Seidman, writing at Huffingtonpost.com, says Sarah Palin’s criticism a recent episode of ‘Family Guy’ is “completely misguided.” Seidman, whose son has cerebral palsy, says she applauds what she views as the show’s message — that people with disabilities are people just like everyone else. An excerpt:

I work so hard to spread that message every single day of my son’s life. It is an endless, Sisyphean labor of love. To be sure, I would not enjoy it if someone called Max an asshole, but hey, at least they’d be engaging with him instead of just gaping. At least they’d be treating him like a typical person instead of like a freak show.

Sarah, the genius of this episode is that it made a girl with Down syndrome seem like just another feisty teenager with ‘tude. It also gave people in this country a way to get the conversation going about people with disabilities.

… Really, you should be grateful to “The Family Guy” — for tackling a taboo topic with relatable humor and smarts; for holding a funhouse mirror up to the public so they can recognize their shortcomings in their dealings with people who are handicapped; and for being real.

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Assessing Sarah Palin’s criticism of ‘Family Guy,’ Jennifer Armstrong on Entertainment Weekly’s Popwatch blog says the show actually treated Ellen, the character with Down syndrome, “very much like any other character, which shows quite a bit of respect in the Family Guy universe.” An excerpt of her comments (accompanied by a video of the show’s “Down Syndrome Girl” number):

Her defining trait wasn’t her Down syndrome, it was the fact that she was bitchy and demanding and ultimately rejected Chris even though he heeded her every command. You could see it as mocking, I suppose, that Stewie sang a song called “Down Syndrome Girl” while getting Chris ready for his date. But that made a lot more fun of poor Chris and his smelly, gross tendencies than it did of his date.

Yes, there are references to hugs that are “tighter than a vice and go on for an hour,” the “shorty bus,” and the fact that she’s “for some reason always shouting.”(Side note: Ellen herself didn’t shout.) But is this enough to warrant Palin’s wrath? I honestly don’t know — I don’t have a child with Down syndrome. I do, however, salute including those with the condition in our everyday entertainment, and doing so without patronizing them. This episode did that, and even came off pretty sweet, by Family Guy standards.