"Juice, please" by Sharon Hanks

Here is an amazing blog contribution from our friend Sharon Hanks! We at NSVAR know her personally and are proud to have her share with us!

Juice, Please
by Sharon M. Hanks

            “What is the one thing that Mitchell could say that would help you the most?”  With one sentence, the speech therapist threw down the gauntlet. She unwittingly dropped a bomb into the middle of my living room and my world. My son was twenty-nine months old and completely non-verbal. Hearing him say anything would have been like a rainbow spontaneously appearing in the palm of my hand – miraculous, beautiful, and awe inspiring.

“I just want to know what he wants,” I replied, somewhat meekly. “If he could tell me he wants juice, or food, or a toy, it would be so much easier for both of us.”  Using sign language, she began to teach me and my son how to say, “I want ---, please.”

Sign language boot camp began.

Grunts and whining were no longer effective forms of communication for my son. If he wanted something, I patiently signed, “I want blahblahblah, please.” Only after I completed the signs and said the corresponding words did I offer him the object he wanted.

“What do you want, Mitchell?” He stared at me, blankly. “You need to ask me for it. You say, ‘I want to eat, please.’  Can you say that for me?”

I signed the words, “I want, please.” All day. Every day.  Each time, I watched his little hands for even the slightest twitch that could be considered a sign. I was continuously disappointed. Would this work? Would he ever respond? Even without an official diagnosis, I knew his own brain was holding him hostage, wrapped in the ropes of Autism. Sign language was a key that could open the door to language for him, so I worked with him continuously.  Unfortunately, delayed speech was only one of many symptoms we noticed.

There is a place of private seclusion any parent faces when they finally grasp the fact that their child’s special needs are not temporary.  In that quiet, dark place, you grapple with blame and frustration, with feelings of impotence and shame. Chagrin, anger, stress – all these emotions come into your life on a daily basis. But the light in all this darkness is an intense love so ferocious and fierce that it consumes you and overrides every negative thought and feeling that has crept into your consciousness.  It is this blindingly bright love that propels you forward, and enables you to fight for this precious child who is so often misunderstood.

Mitchell is no longer the child locked away without language, and his progress has been spectacular. Within a week of using sign language, the doors of language opened for him. He said, “I want juice, please.”  My heart exploded with joy and relief.  In that moment, I knew there was hope.  Although the complexity of his issues has grown as he has matured and aged, he is a bright, happy, humorous, nine year-old boy who is starting to understand his disability. We have moved far past that simple sentence in sign language. The dark days linger around the edges of our lives from time to time but they are met with hope and determination.

NSV-SOS is back in the saddle!!!!

A call to arms from NSV-SOS Co-Chairman Cassie Purtlebaugh!!!
Join us and help us fight for the children of the Northern Shenandoah Valley!!!

Greetings friends and committee members of the NSV-SOS!

 

As summer has come to an end, and we are all back from our vacations and settling into the school year, it is time to come back together for the sake of our children. As you know, no progress has been made since our last meeting in securing a satellite office in our location for the Child Development Clinic. Additionally, from our understanding, the numbers of children being served in the JMU clinic continue to be less than those who were served in this region, and it already feels like our children are slipping through the cracks.

 

As a private provider, I have recently, especially, felt the sting associated with losing the CDC in our area. We have many, many children who are enrolled in our Therapeutic Day Treatment programs who are in desperate need of full-scale psychological evaluations. With other local providers also not offering this service funded through Medicaid, we are having to send our kids further and further outside of our own community for services. This is in direct contrast to what we, as a systems of care, want for our children. We need local services that are affordable for those most in need, and, as a committee, I feel like it is our obligation to really start to figure out some answers.

 

Will we get the collaboration we need from the state level Department of Health in order to offer these services in a manner that is accessible for our children and families? Maybe not….but, we are a strong group of professionals with lots of ideas who can certainly problem-solve and work with agencies here in our own community to offer this type of care. I’m not giving up the fight for the CDC to be local….but, in the meantime, while contracts are or are not being negotiated on the state level, we have to do something to prevent our kids from continuously falling through the cracks, and to assist their parents and guardians in securing the help they need to move forward with assessment, recommendations, and treatment in our own community.

 

I propose a meeting to come back together on these topics on October 21, 2013, 6-8pm, hosted at Lutheran Family Services of Virginia. Will you help us be a part of the solution? Please let me know if you are able to attend. Thanks so much, and we look forward to seeing you again!

 

Cassie Phipps Purtlebaugh, M.A.
Director of Community Based Services

Lutheran Family Services of Virginia
225 East Pall Mall Street
Winchester, Virginia 22601

Phone: 540-450-2782
Fax: 540-450-2783
www.lfsva.org

Autism is not a four letter word

NSVAR is happy to have our friend Heather Glaros as a guest blogger on our page! You can find her blog at http://shriekingvioletky.blogspot.com/  as well as find her on Facebook! If we are lucky, we will hopefully see more submissions from her!

AUTISM IS NOT A FOUR LETTER WORD

 
I remember when we got Joshua's diagnosis. It was a long, daunting process that had taken almost four years. The first time we had him evaluated he was four years old and in his last year of preschool. We were told he was just too smart for his age and was bored. That was the reason for his outbursts and "quirky" habits. Jump forward two years to the first grade and nothing has changed. In fact, it has gotten worse. So we go through the whole process again to get the same answer. He's just too smart for his own good. This had now become unacceptable. Finally, at the end of his second grade year we got the answer. Asperger's Syndrome, or as it would be called now, high functioning autism. Even though I was familiar with Asperger's and had a mom's intuition this is what was going on with my boy, it still felt like someone had punched me in the gut.
 
 Now that we had a diagnosis, what do we do? Who do we tell? My husband and I decided that beyond telling family, it would be on a need to know basis. We quickly found out that everyone who had regular contact with Joshua needed to know. Friends, teachers, karate instructors, parents of his friends, every single person who we trusted with our son had to know. It was the only way they would know what to do to help him. We were not in any way, shape or form embarrassed by autism. It was more of a way to protect Joshua. We didn't think autism was a "dirty word" but we didn't want him to be labeled or thought of differently. My biggest fear was that once that word was attached to my son that would be all anyone would be able to see. An autistic child, who can't do this and can't do that. What he CAN do far outweighs anything he CAN'T do.
 
 Fortunately, that has never happened. All the people who know and love Joshua still see him as just Joshua. Children with autism are so much more than just a diagnosis. They are loving, intelligent, creative, and above all they are people. Autism is nothing to be ashamed of and in order to raise acceptance, we have to talk about it.

10 Things Autistic Kids Need in a Pediatrician

This is a blog post written by a great friend of ours, Sharon. Please check out her site Autism NOVA because it's full of great information and insightful blog posts!

10 Things Autistic Kids Need in a Pediatrician

In a perfect world, each child would see a pediatrician who remembers the child’s name and personality, works closely with parent to identify issues and solutions, treats the child’s illnesses, provides sound medical advice, and respects the parenting choices made for the child. New parents interview multiple pediatricians hoping to find the right match for their family.  I’ve seen more planning go into pediatrician searches than you’d see for a large scale baby shower! Moms, new mothers in particular, want a good pediatrician! We want a medical partner, not a cattle call practice.When you have a good pediatrician, the worst issues are easier to handle and struggle through because your doctor is a partner working with you. When your pediatrician isn’t all that great, it’s a struggle. It’s more than a struggle, actually. At times, this one person you see a few times a year can make you question your parenting abilities and choices, can heap on guilt and can make you feel like a foolish nincompoop.  Yes, nincompoop.When your child has special needs – great or minimal – the need for a medical partner is even greater. Without the teamwork, without the medical partner working with you to reach your goals for your child’s treatment, without that medical support, it’s a hard battle uphill, in the rain, barefoot, with leeches and mosquitoes, hidden pits, hissing snakes and natives in the bush throwing rotten vegetables at you.  Well. That’s what it feels like – lonely, hard, hurtful and impossible.My son is diagnosed with high functioning autism. He seems like a pretty typical kid to most people. He has some social challenges, for sure.  After experiencing a particularly wonderful pediatrician and then a pretty lousy pediatrician, I have some words of advice to all you peds out there.10 Things Autistic Kids Need in a Pediatrician

1. Understand the nuances of my disorder. 

Just because I don’t stim the way you perceive an autistic kid stims or because my verbal skills are advanced, it doesn’t mean I don’t have autism or than I don’t struggle.  No two cases of autism are exactly the same. Try to understand how it presents in my life.

2. Don’t blame my parents for my behavior.

This goes back to point number one – understanding my disorder. It might take me three years to learn how to nicely handle a cat. I’m not trying to be mean to the cat; I think those yowls are funny sounding and they are how the cat is saying it’s having fun. I’m not being bad and my parents are really trying to help me learn how to behave properly. But my perspective is so different from yours so I have to relearn things.  This is an innate part of who I am, not a reflection of poor parenting.

3. Don’t blow me off during my exams.  

Yes, I may talk about subjects that you don’t care about. I am hyperfocused on things you don’t understand. But listen to me. I just want to be heard.  I like you and I’m trying to connect with you in the only way I know how.

4. My body is a mystery to me. 

I can’t explain my sensory overload. I can’t explain why making noises calms me. I can’t help that I wet the bed. Telling Mom it’s in my head and that if she will use the right words, I’ll be able to change these things isn’t going to work.  Unfortunately, “believing” that I can stop wetting the bed really isn’t going to make a difference.

5. I’m a pretty cool kid. 

I may be a bit “left of center”, but I’m pretty cool and have lots of positive points. I’m not a trouble maker, a discipline problem or a nuisance. (See #1, again.)

6. Take some time to get to know me. 

By understanding my likes and dislikes, you’ll be able to help me better and better motivate me to endure procedures and tests I don’t want to do.

7. I want to understand.  

Sometimes you will have to take more time explaining procedures to me. I like to know all the details. I want to know all the steps. I ask because I want to understand.

8. Be proactive! 

I need you to help my parents find the resources I need for occupational, speech, behavioral  and other therapies. They need your suggestions and direction. It can get pretty overwhelming for them and sometimes they need you to help point them in the right direction.

9. Be involved. 

It’s easy to see me once a year for a check up and a few shots. Any run of the mill, average doctor can do that. I don’t need that. I need you to be an active participant in helping me develop and progress. If my parents need a prescription for incontinence pads for the bed or a special medication without dyes, don’t be the roadblock! Help them help me. Read all the reports from the other doctors. Provide input; the more people working together to help me, the more progress I can make!

10. Be an autism friendly doctor. 

From your bedside manner, to the way you conduct your exams, to your research and education about autism, be stellar.  This means being concerned about how fluorescent lighting in your office can affect a child with autism. Understand the possible impact of background music playing in your office. Do you have multiple doors to help keep kids from running off? Do you know the specialists in the area? When the child is hyper-focusing, can you work around that for the exam? Learn about these kids and be flexible enough to work with them instead of expecting them to work around you.

Politics?

I don't like politics. I never have. I don't know the difference between right wing and left wing, nor do I truly understand liberal or conservative. For the most part, they're a bunch of people making bad decisions with my money! If I don't like someone in political office, it's certainly not because of their party alignment. It's probably because I think they are not looking out for the best interests of their constituents.

That being said... let's talk about politicians.

Senator Jill Vogel: At the very beginning of our fight for the child development clinic, I presented her with a petition. She sat me down, listened to everything I had to say and assured me she would help. She gave me her business card and wrote her personal cell phone number on the back. She has been as good as her word! The Senator and her office personnel have been an invaluable resource! Everytime I have called her, she has gotten back to me quickly. She has taken time out of her busy schedule to have long drawn out conversations with me. I am eternally grateful, and she will always have my support.

Candidate Larry Yates: I had the pleasure of meeting this gentleman at one of our CDC meetings with the state health department. He had approached us and wanted to help. He has shown a concern for our disabled community and has made himself accessible for advice and assistance in our fight for the child development clinic. He encouraged me to take the opportunity to speak at a local forum he hosted for the disability community. He seems to be a very down to earth gentleman with genuine care and concern for the community.

Candidate Mark Berg: This gentleman is running against Larry Yates for the 29th District Delegate seat. I have attempted to contact him on several occasions. I took the time to explain our work to keep services local for intellectually and developmentally disabled children and adults. I had invited him to our meetings as well. Mr. Berg sent a response to me which didn't even address my original email. When I posted on his Facebook page about my disappointment, the post was quickly removed. I was soon contacted by one of his handlers who promised me a quick response by the candidate himself. As of yet, I have not heard a thing. Another gentleman posted his concerns as well, only to have that removed. Apparently he doesn't seem to realize that 1 in 50 children have autism... and that child has two parents who most likely vote. One in 25 parents in the 29th district are influenced to vote by his actions. His inactivity is going to cause them to vote for someone else.

I have absolutely no idea what political affiliation these three people have... I don't know if they are Republican, Democrat or Independent.

And I don't care.

The only Tea Party I have ever heard of occurred in Boston a long long time ago.

But I DO know who has shown concern and care for our community. I have seen who is willing to roll up their sleeves and fight for our children. That's what matters. Our children today are the leaders of tomorrow. How we lead them today influences how they lead us in the future!

What kind of leader do you want?

The politically correct filter

I received a letter from the health department today. It was a letter to tell me to expect a letter. I'm guessing I must have caught them off guard. If you read my previous post you will see my letter to them asking why they've been dragging their feet in their communications with us.

So, the letter I'm about to post below must be a placeholder for me while they run their actual response through their politically correct filter...

Please feel free to comment let me know what you think
.......................................................

This is in reply to your recent email to the Virginia Department of Health regarding child development services in the Winchester area.  Thank you for contacting us to express your concerns.

 

We are currently researching the questions that you raised in your email and will be in touch with you shortly with a more specific response. 

 

Should you have questions in the meantime, please contact Sidnee Dallas, Program Administrator of the VDH Children with Special Health Care Needs Program with the Division of Child and Family Health.  You can reach her by telephone at 804.864.7716, or by email at Sidnee.Dallas@vdh.virginia.gov.

 

Cynthia C. Romero, MD, FAAFP

State Health Commissioner

109 Governor Street

Richmond, VA 23219

Another letter to Richmond...

I've emailed the Virginia Department of Health YET AGAIN. They have been lax in their openness with information. I believe they are of the idea that as long as they can drag their feet with us, the less they need to do. They probably are hoping we will go away...

NOT GONNA HAPPEN

Here's the email...

Greetings,

I am emailing to communicate with you about our progress and open communication with the JMU staff. We have had a very productive open dialog with the staff at Harrisonburg. They have been so very helpful and informative about the possibilities of a satellite office in the Northern Shenandoah Valley. They have also voiced concerns about the lack of consistent communication on your side of the equation. "It's almost like the right hand doesn't know what the left is doing," Zingraff said. "It doesn't help that all of us have talked with several key players, but never at the same time or about the same issue." For example: the files still at the CDC in Winchester, which we had mentioned to you on several occasions, WERE NOT refused by the JMU staff as you had informed us. They had actually prepared space for those very files!

We have been in constant communication with your office about all aspects of our work toward serving the special needs community in our area, but your responses have been slow and lacking any true information. Doctor Devine has constantly been in the know as far as our progress is concerned.

When can we expect an answer as to how the state can help the special needs community in our area? The longer the personnel in your office remains inactive, the greater the number of children in our area aren't served. Your inactivity is negatively impacting a growing number of children.

Please open the lines of communication with us. And supply us with facts, ideas and answers.

Jack Starry
540-692-6136
www.nsvar.org
facebook.com/nsvar
twitter.com/nsvar

Musical Chairs and more unwashed hands

Our meeting with JMU was a lengthy and fruitful one! We were very pleased to have Rhonda Zingraff, director of JMU's Institute for Innovation in Health and Human Services, and Kim Hartzler-Weakley, director of the Office on Children and Youth join us! First and foremost, I want to thank them for their candidness and openness. I hope we can continue to enjoy such an open dialog with them.

Leading up to the meeting, our local TV3 Winchester friend and reporter Hattie Cheek aired a story about the CDC and our fight to keep services local. Hattie has been a great supporter of our cause and has enabled us to keep our fight in the public eye. Her news story can be found here: LOCAL WOMAN FINDS SERVICES SHE NEEDS AND HELPS TO KEEP THEM LOCAL

Thanks Hattie!

At the meeting, we were joined by Kim Walter from the Northern Virginia Daily newspaper. She took copious notes during the meeting and the article was published today! You can read it here: JMU CLINIC SUPPORTS IDEA OF CHILDRENS SERVICES SATELLITE

Its a very well written article and clearly sums up our meeting! We value and appreciate Kim for her time and attention to the matter! Thank you, Kim!

Now... on to the meeting.

One of the things we had been asking for was an explanation as to where the money went. We went forward with a Freedom Of Information Act request, and this non-answer is what we got:

Kinda looks like a case of "Hide The Money" doesn't it?

 

 

As I am sure you read in the newspaper article, the JMU CDC took on a lot more than just our catchment area. Their service area is a long laundry list of cities and counties.  

 

They have had meetings with the VDH just as we have, and are running into the same problem.

 

Musical Chairs.

 

Almost every time we have had a meeting with VDH, its been with different people. Their office has been a revolving door as far as their personnel are concerned. Every time we meet, we find ourselves having to re-hash all the information... all over again. Seems excessively counterproductive, doesn't it? The folks at JMU have had the EXACT SAME PROBLEM!!!

 

How are we supposed to accomplish anything when we keep having to backtrack? On top of that, we aren't getting answers from the VDH. We asked to be part of the conference call taking place this Friday at 10AM. Dr. Charles Devine informed us that we probably won't be included.

 

Why? What does the state have to hide? Is there something they don't want us to hear? I would hope that they had the best interest of our children in mind... but I'm not getting that warm and squishy feeling from them. At all.

 

JMU wants answers just as much as we do! You can only take so much of "That's a good question, we will have to get back to you on that" before you've had enough.

 

YOU'VE HEARD OUR QUESTIONS AND HAVE HAD AMPLE TIME TO "GET BACK TO US ON THAT" How about those answers?

 

To quote Rhonda Zingraff "It's almost like the right hand doesn't know what the left is doing," Zingraff said. "It doesn't help that all of us have talked with several key players, but never at the same time or about the same issue."

 

Musical Chairs.

 

OK people. The music has stopped. Let's everyone have a seat now and start paying attention to what really matters. OUR CHILDREN.

 

It's time the VDH stopped playing games with us, with JMU and with the welfare and future of OUR children.



Life as an undiagnosed Aspie

I had always known that I was never quite like everybody else. Until my son was diagnosed I could never put my finger on it. I'm certainly not riding on the coattails of his diagnosis, because I had seen similarities long before he was diagnosed. Before military school, I had found it very difficult to look people in the eyes... physically painful even. I've always had very narrow obsessions, they would last for several weeks or months then I would drop them completely. I've always been very musically inclined and sarcasm is my coping mechanism.

At a local support group I had the pleasure of listening to a college professor with Aspergers talk about the syndrome and it was like he was explaining me perfectly. Everybody who knows me and knows about it can see the connection easily. I tend to think of myself as above average intelligence. I am flattered that most of my friends say I'm the smartest person they have ever met. My grades at school may not have reflected this, but I think I am a master of useless information! If you don't need to know it, I probably have an answer for you!

I was sent to military school from 6th grade until I graduated high school. I am certain that the structure helped me become the person I am now. Aspies thrive on routine, and the rigid structure of a military school catered to that need for me.

I used to have short silent outbursts where it would feel like my entire body was wound up like a rubber band twisted into knots until its released and unwound quickly all at once. I would have nervous ticks and noises I would make when I got stressed out. Summers with my stepmother amplified those issues because her and I always had a very contentious relationship. I apparently was the ball and chain she didn't want in the house, so I generally got the short end of the stick. that's one hell of a way to turn a child into a ball of nerves!

Looking people in the eye now is still painful, but it is a learned skill from years of having no choice but to do so. The one thing I still have a lot of trouble dealing with its changes in my routine. I absolutely love when family comes to stay at my house, but I admit that it does throw me off. I wouldn't have it any other way though, because it's great to spend time with the ones you love.

I tend to blurt things out in the conversation that arent quite relevant to the subject, and then feel like an idiot for doing so shortly after. My social skills generally fall into the sucky range!  My close friends are used to this and just ignore me! My best friends are all off center somehow someway, but that's exactly the reason I love them so much.

If it wasn't for military school, I would be a complete and total mess right now. as much as I hated it while I was there, I am so glad I went now.

One hand washing the other?

Tonight the Northern Shenandoah Valley Save Our Services coalition met at the former CDC offices to discuss with the State Health Department representatives the ways we can work together to get the funding back to this area for a local Child Development Clinic.

We were very pleased with the turnout on our side of the table. The NSVSOS committee was joined by:

• Concerned Citizens and Parents
• The Winchester CDC Personnel
• Frederick County Department of Social Services
• Frederick County School Board
• Lord Fairfax Health District

We were especially fortunate to have Senator Jill Vogels legislative assistant Tricia Stiles with us as well as Candidate for the 29th District Delegate seat Larry Yates .

Everyone in our group brought up some very good points tonight! Questions were posed to the staff in Richmond, but most (if not all) went unanswered.

1. What is JMUs capacity for seeing and evaluating children at their facility? How many per month are they able to serve?
2. What is the current backlog of appointments?
3. What is the expected wait for children on that backlog?
4. Because of their increased caseload, how has the budget at JMU increased? How much of the money that was originally earmarked for the Winchester CDC did they end up with?
5. Being as JMU has refused the patient files that are housed at the Winchester CDC, what will happen to them? Who will administer these files if there were ever a need for them by the patient/family in question?
6. What do we have to do in order to be involved throughout the year and especially at contract renewal time?
7. What is JMUs transition plan?
8. What is JMU doing to solicit their service to children and providers in this area?
9. How will emergency appointments be handled?

Not one of these questions were answered tonight. Either due to bureaucratic red tape or a lack of preparedness... we were left with questions. Speaking of bureaucratic red tape, a phone call with a request to encourage JMU to communicate had to be run up the chain of command flagpole... at the expense of never calling me back.

As for JMU, our initial attempts to contact the Harrisonburg Clinic were met with less than savory results. I'm not sure why. Thankfully, another representative from JMU contacted NSVSOS Vice Chairman Cassie Phipps Purtlebaugh and extended an olive branch.

I would love to have them drive up from JMU and sit in on all of our future meetings. Its their job, right? They'd surely be paid for it. As a matter of fact, I am publicly requesting their physical presence at the next meetings! I would love to meet them personally and shake their hands! Get to know them, and have them get to know the parents of children affected by the loss of our CDC. I think it would be an eye opening experience for everybody! Of course, if the trip up here is too inconvenient, I'd be happy with a conference call.
Candidate Larry Yates brought up something interesting... The Virginia State Rural Health Plan . This plan, which the State Health Department has a hand in, has recommendations from their "Access Council":

Access to quality, affordable and accessible health care services is essential and should be an expectation of all rural residents. Access must not be limited solely to primary and acute care, but must include a greater integration of mental/behavioral health, EMS, dental/oral health, telehealth, women’s health services, preventive care and health promotion and education.

 Sounds like a great idea to me! Where does the CDC fit in to that plan? That leads me back to the title of this blog. Kinda seems like one hand isn't washing the other, don't ya think?

One last thing. Ever since our first meeting with the State about the CDC, we have been mentioning their budget and how it would be great to see it. I even asked for it in my email response to Cynthia Romero on June 2nd. So... let me make it crystal clear

I WANT TO SEE THE VIRGINIA STATE HEALTH DEPARTMENT BUDGET FOR THE PAST 3 YEARS

Pretty Please
With sugar on top
;-) (winky face)
Thank You.

A New Organization and a Fresh Perspective!

Tonight was our local meeting for the CDC. I was absolutely amazed by the turnout!!! We were extremely fortunate to have concerned parents as well as important members of the Special Needs Community.

• Frederick County Department of Social Services
• Winchester Child Development Clinic
• Lord Fairfax Health District
• Healthy Families
• Winchester Public Schools
• Lutheran Family Services
• Northern Shenandoah Valley Autism Resource

The community has really come together for a very important goal. Northwestern Community Services www.nwcsb.com has donated space for evaluations to be conducted locally. THANK YOU!!!

We all decided to get officially organized. We have designated ourselves as the Northern Shenandoah Valley Save Our Services organization (NSVSOS). We have a Facebook page up and running (THANKS Sharon Hanks!) at www.facebook.com/nsvsos

I (Jack Starry) was nominated Chairman
Cassie Purtlebaugh is Vice Chairman
Sharon Hanks is Secretary

This is uncharted waters for me... I've always just been a loudmouth. I'm going to have to adhere to a structure, now!

Now... on to the meat of the matter.

What we are working to do is notify all the local service providers in the area about the services being sent to Harrisonburg and have them, en masse, express their genuine concern about the importance of keeping services local. I, along with other concerned parents, will be contacting JMU and inviting them to our meetings. Including them in the process and working closely with them to facilitate the opening of a satellite office here.

Again, the importance is multi faceted. Right now, JMU has about half the monthly caseload scheduled (see my blog titled "Not Half Full, Not Half Empty... Just Half") that the local CDC had. When there is a "no show" (which is WAY MORE probable being as JMU is so far away) JMU isnt able to quickly work another child from our area in. Its a logistical impossibility! That open slot goes to a child close to JMU! So, the children of our area lose out AGAIN. If JMU is going to see children from our area until such time a local office is up and running, they need to continue seeing children at the rate and frequency that the local CDC  had been.

All that being said, our next meeting is Thursday, July 25th at 6PM. We will be meeting at 10 Baker Street (The former CDC offices). We hope to have JMU and The VDH commissioner in attendance (most likely by videoconference). That brings up an interesting point... if the JMU officials were to find it too inconvenient to travel to Winchester for a meeting... it stands to reason why it would be even more difficult for a family with a special needs child to travel down to them... dontcha think?

By the way, NSVAR was on the news tonight about just this very topic! CLICK HERE to see the video!

It's that time again!

Tomorrow, Wednesday July 17th, at 6 pm... members of the special needs community will be putting our heads together to come up with an idea to keep the Child Development Clinic services in the Winchester area.

If you are new to my blog/website/Facebook/G+/Twitter stuff, let me fill you in...

The Virginia Health Department decided to close the Winchester Child Development Clinic (CDC) and transfer all the scheduled patients to Harrisonburg (75 miles away).

The CDC evaluated intellectually and developmentally disabled people in order for them to receive important services to help them become functioning citizens in society. Essential services to enrich their lives.

If you go to www.nsvar.org and click the Social Links / News link, you will see all the news videos about our fight to save the CDC.

We have presented them with a petition which now has over 7000 signatures, the backing of a state Senator and the attention of the Health Department.

Got an idea to help us save the CDC? Contact me! Email me at nsvar.org@gmail.com or call me at 540-692-6136 and I will give you all the details!

I really hope to see you there!

5 things autism dads want you to know

I read tons of blogs every day. I search for informative content for www.nsvar.org and www.facebook.com/nsvar and I notice that 90% of the blogs are written by mothers.

That makes sense to me... Mothers are the ones doing most of the nurturing, nose wiping, getting up in the middle of the night and stuff like that. They most certainly "have a dog in the fight" when it comes to their child. It's in their dna. My wife is a wonderful mother... My son is extremely well loved and cared for! She is a tireless advocate for him.

I'm the loudmouth in the family. (the 2000 pound silver back gorilla)  I started the website, I'm leading the charge against the state of Virginia's health department. I'm the blogger, webmaster, researcher and curator.

So... As a father of a child with autism (and an unofficially diagnosed Aspie myself) here are some things you may be interested to know :

1. Not all dad's take a "hands off"  approach to their child's autism. Way too many do, but there are fathers out there who refuse to let their children falter.

2. We are probably more terrified of our child eloping. We are the protectors of our clan. A real man takes that job seriously. I know I have nightmares about it.

3. Dad's are world class snugglers. This serves three important purposes: A. It's a calming sensory experience (for him and me both) B. If I'm holding him, I know he's safe. C. Snuggling is warm, sweet and a bonding experience.

4. Fathers are fierce advocates. Set a determined man on a path, and he will knock down any obstacle to make the way clear for his family.

5. Dads are imbued / blessed / plagued with a competitive nature that rejects the prospect of failure. I'm fighting the state to keep the local Child Development Clinic open. It's a matter of pride to me that I not lose this fight. I refuse to. You want to make my child's life difficult? You have to get through me first. (proceed at your own risk). Sure, there's arrogance in there, but advocacy and arrogance can make good bedfellows with the right circumstances.

I'm sure there are many more important points, and I encourage dads and moms to comment on this blog and tell me! My brain is like a bag of bees usually (thanks alot, Aspergers) and I'm sure I've missed something.

An open invitation

Wednesday, July 17th at 6pm, we will be gathering in Winchester, Virginia to come up with several ideas on how to keep the Child Development Clinic services local.

If you have ANY ideas on the subject, I encourage you to join us! We will have several members of local community services, the school system, local politicians, the local news media, passionate advocates and concerned parents.

EVERY VOICE IS EQUALLY IMPORTANT!

Please stand with me, with the children of our community who need this essential service, with the families that love them and want to give them every opportunity in life... Stand up for what is right!

If you are interested in attending, you can contact me at nsvar.org@gmail.com , 540-692-6136 , or by using the contact form on www.nsvar.org and I will give you all the pertinent details!

If you are unable to attend but have an idea or suggestion, please email it to me and I promise you it will be read at the meeting!

I hope to see you there!

Not half full, not half empty. Just half...

Tonight we met again at the Winchester Child Development Clinic to find a way to keep the services they provide local. We were joined by video conference by the State Health Commissioner Dr Cynthia Romero and her staff. I am honored that Dr. Romero and staff took the time after office hours to meet with us. I'm glad they recognize that this is an important issue and deserves their direct attention. Doctor Charles Devine was our host.

I was joined by the Honorable State Senator Jill Vogel (by phone), Susan Groom from the Winchester School System, concerned Autism Advocate Cass Purtlebaugh and the staff of what was the Winchester Child Development Clinic.

First off, I want to thank a few people. Senator Vogel has been a staunch supporter of our cause and I am so very pleased that she is fighting along side of us! She was absolutely awesome tonight! Susan Groom brought up some very good points at the meeting and it is obvious that she has the best interests of our area children at heart. The City of Winchester is VERY lucky to have her. As for the staff of the CDC... they are the reason we are all together in the first place! Its their tireless devotion to special needs individuals in our area that brought us to this point!

But, the meeting left me with more questions than answers...

1. The budget was asked for and mentioned several times by our group, but no one on the other side of our virtual table said ANYTHING when it was brought up. Where were the cuts made? How much money was allocated to JMU to hire more employees in order to take on an increased case load? We need to see the budget. Why cant those monies stay in our area?
2. Being that they now (obviously) have more money to hire and evaluate, whats their quota for seeing children from our area? The local CDC had been fully evaluating at least 150 children per year, not to mention all the other services they had been undertaking. Is the JMU facility going to keep up that pace? You will find the answer to that later on in this blog. Prepare yourself, its disappointing.
3. The state used to have satellite offices for each of their CDCs. The Winchester CDC had offices in Leesburg and Warrenton. Why couldn't the JMU facility open up a satellite office in our area utilizing space provided by one of our many generous non-profit organizations (and the money I mentioned above)? 
4. If the state is serious in their intent to help us keep services in our area, how long is it going to take? What can they guarantee us? What tangible help will they provide? (The money which was formerly allocated to the Winchester CDC would be a GREAT start). How much weight will they carry?

That's the most important questions so far. Now for the disappointing part I mentioned earlier...

The JMU facility has 7 children from our area scheduled for evaluations for the month of July. Our local CDC, prior to being closed, had 14 children scheduled for evaluations. Thats 50% less. HALF. Wheres the efficiency? What happened to "seeing more children"? This looks like seeing LESS. That's 7 children this month who wont be able to benefit from Behavioral Therapy, OT, Psychological Therapy, Environmental Modifications, Skilled Nursing Services, Assistive Technology, etc. 7 kids who will suffer needlessly in school because the groundwork won't be laid for them to have the tools they need to succeed.

How long will our area have to wait before local services are returned? How many children wont be seen? 14? 28? 56? When did that become acceptable? Remember the autistic children who eloped and were found dead? Environmental Modification can help to prevent instances like that. 50% fewer children will have that safeguard. Unacceptable.

Theres no favorable way to see that number. That glass IS NOT half full. It's up to all of us, advocates and State Health Department, to fill that glass back to the top.

Our next meeting with the state will have many more people "In the Know" involved. I will also be asking the news media to join us.

Get involved. You owe it to your children.

Tomorrow ...

It's time to meet again with the Virginia Department of Health. We have been tasked with finding a feasible way to keep services in our area. The center is closing, that much is certain. But they have extended the closure by one month to help the families that narrowly missed the deadline.

I'm thankful for that, but it's merely a band-aid on a gaping wound. We need to find space and money for these amazing individuals to do their great work helping Intellectually and Developmentally Disabled children and adults in our area.

Get ready, Commissioner Romero! We are not going to give up until we get what our families need! I'm bringing friends in high places!

Pack a lunch and bring backup. You're gonna need both...

Just sent an email to the VDH

It's been two weeks and no one has gotten back to us after the meeting. Optimism is like snow... it can be laid on thick, but when things get heated, it doesn't last long.

Greetings,

I wanted to thank you for taking the time to listen to us 2 weeks ago about the Winchester CDC closure. I'm curious at to when our next meeting will be. We have some very promising ideas and look forward to implementing them and keeping our essential services here in our community.

We have become aware of several issues and inefficiencies of the JMU model and would like to being that to your attention as well.

Time is of the essence in this matter. The children in this area need the help which the CDC provides. I'm sure that if it were your children needing the services provided, you would want action and results as well.

That being the case, let's act in the best interest of the children in the Lord Fairfax Health District and keep the services where they are supposed to be... locally!

I look forward to your timely response.

Jack Starry

www.NSVAR.org
Facebook.com/NSVAR
NSVAR.blogspot.com

Just to catch you up on NSVAR News...

I know its been a while since I have posted a blog. Nothing has really happened since my meeting with Dr. Devine and Sidnee' Dallas from the Department of Health. I'm going to start pushing the issue again this week.

I'll tell you what has frustrated me, though... I had contacted all the local news agencies at the beginning of this fight and the response was mixed. Hattie Cheek at TV3 Winchester, Hayley Mason at WHAG News and Kim Walter at The Northern Virginia Daily really took interest and have done a wonderful job keeping the issue of the Child Development Clinic in the news. They truly care for the children and families in our area who are impacted by the closing. I also will be working with Dan McDermott at the Frederick County Report. to get our story out to even more people!

The Winchester Star... thats another story. Rebecca Layne had interviewed me at the very beginning and put a small article in the paper. They havent wanted to touch it since. We have made great strides in this fight! A petition with almost 7,000 signatures! The backing of a state senator! I emailed and called to ask why they havent been covering it since... the response I got was basically to call them when something big happens. Really? Closing the CDC is the BIG and BAD thing we are fighting to prevent! I would hope that a community news outlet would take some initiative and work FOR their community!

Its disappointing, to say the least.

On the opposite side of that coin, I have been honored to know and become friends with some amazing people in our community as a result of this struggle as well as strengthen my friendships with others! I think I have become a better person during all this. I've had my head so deep into NSVAR and the CDC that maybe I haven't shown the appropriate amount of appreciation. "Godmother", we truly love ya! You are our family now! Shelley D., we are so proud to know you better and consider you our close friend! Your support and willingness to speak out with me for the CDC has been so wonderful! Sharon H. We are glad to know you, glad to fight alongside you for the CDC and I'm especially glad to know that your little guy got what he needed! I look forward to our growing friendship! Senator Vogel, I hope I'm not overstepping my bounds by calling you a friend... but your support has been invaluable! It gives weight and credibility to what we are fighting for. I value and appreciate you! (Almost called you just "Jill" on the phone last time... no disrespect intended madam Senator!)

Oh! Hey! We have had some car decals made with the NSVAR logo! Want to help spread the word?

My van rocking the NSVAR goodness!

Pretty cool, huh? They were made by Alyson at http://www.ososplendid.com/ and they are beautiful! (Check her site out... A lot of really cool and creative gift ideas to be found there!)
They are $7.00 each. That covers my cost to have them made, and whatever postage I need to send them out. I can mail them anywhere in the US. You can reach me at nsvar.org@gmail.com , www.nsvar.org , www.facebook.com/nsvar or www.twitter.com/nsvar if you are interested in getting one.

Appreciative

Today the "Godmother" and I met with Dr. Charles Devine at the Winchester CDC. We were joined on conference call with Sidnee' Dallas from the Virginia Department of Health.

The meeting was very productive, and only the first of many. We are brainstorming to find a way to keep services local.

I am thankful for Dr. Devines time, Mrs. Dallas' time and especially thankful to "The Godmother" (but sure if I can say who yet) for taking part today. Looking forward to involving some area movers and shakers in the next meetings!

I'm hopeful. Very hopeful...

Things are looking up!

Remember MY LAST POST ??? Well... Doctor Charles Devine, Director of the Lord Fairfax Health District, called me today and I am meeting him tomorrow afternoon!!!!

From what I gather by the letter in my previous blog and what he said to me, I am being directly involved in the decision making process!

I have some ideas... And I plan to do all I can to keep the CDC services local. This will involve me, people in our area who are willing to participate in the "Brainstorm" and people from the Department of Health in Richmond.

I asked in my last blog and I am asking you now more than ever... Please give me any and all ideas you may have about how we can keep the CDC in our area!!! No idea is too far fetched!

PLEASE HELP ME HELP THE CHILDREN IN OUR AREA WHO NEED THE CDC!!!

I can be reached at:

www.nsvar.org

www.facebook.com/nsvar

www.twitter.com/nsvar

or here... just leave a comment at the bottom of this blog post!

Response from the VDH Commissioner

Today I received a response to the email I had sent last week to the Virginia Department of Health:

Mr. Jack Starry

nsvar.org@gmail.com

This is in reply to your recent email to Dr. Kalanges, Sidnee Dallas and me regarding the closure of the child development clinic (CDC) in Winchester. Thank you for expressing your concerns and raising specific issues regarding access to services for children with special healthcare needs.

We live in challenging times as fiscal resources continue to decline while the burden of important health issues in our children remain the same or even worsen. As Commissioner, I find that the decisions facing VDH are only becoming more difficult with few good answers. Despite that challenge I remain committed to assuring quality service to those in need. To that end, despite the shrinking resources, we continue to work to be sure a quality Child Development Clinic service can continue in each region of the Commonwealth. We realize this represents a change particularly for families already challenged by the issues they face; however, I have directed our staff to work with you to determine how, together, we can lessen the impact of financial limitations we all face.

In response to your correspondence, VDH management has again reviewed plans involving the Winchester CDC in depth but determined that the date of closure for the clinic cannot be changed at this time. VDH recognizes that this closure may cause additional challenges for families in your community. As a result, VDH staff is researching other options we may be able to offer these families to facilitate their utilization of CDC services.

I greatly appreciate your sincere interest and dedication to this matter. I have directed Dr. Charles Devine, Director of the Lord Fairfax Health District, to contact you in order to schedule a personal meeting to discuss this issue further and elicit your input. You can expect to hear from Dr. Devine in the very near future. Please feel free to contact him at (540) 722-3480 or at charles.devine@vdh.virginia.gov.

Cynthia Romero, MD, FAAFP

State Health Commissioner

Virginia Department of Health

109 Governor Street

Richmond, Virginia 23219
____________________________________

I fully plan on meeting with Dr. Devine and work to keep these services local.

What options do you feel are viable? What would work for you to ensure the best possible care for your special loved one? Please respond here or email me at nsvar.org@gmail.com and let me know!

Help... and a lack thereof

I've been plugging away at this fight for the CDC. I've spoken to Senator Jill Vogel on several occasions about it and I've also been in contact with Hattie Cheek from TV3 Winchester.

I sometimes wonder what I should be doing now... I emailed the VDH Commissioner, as well as the director of Family Health Services. Twice. They haven't responded to me yet. I'm working on that one...(wink wink)

I received a short letter from Representative Frank Wolf. Click it to view a larger image

 

No help. Kinda disappointing, isn't it?

Well... I did kinda get lucky last friday. I called the office of Family Health Services and fully expected to get Dr. Laurie Kalanges assistant or secretary. A man answered and I asked to speak to Dr. Kalanges. He told me that he did not know how to transfer calls, so he gave me the number to her desk!

Here it is:

Dr. Laurie Kalanges

Director of Family Health Services

Virginia Department of Health

(804) 864-7170

Call early, call often!

I REALLY NEED YOUR HELP. I can only do so much by myself. I am begging you to pick up the phone and tell Dr. Kalanges how important the CDC is to you, your children, your friends children and the community!

I see why the budget cuts were made!

READ THIS ARTICLE

Look 16 lines down in the article...

Cynthia Romero, Commissioner of the Virginia Department of Health is making...

$181,500.00 a year!!!

No wonder they needed to make budget cuts!!!

Ladies and gentlemen, your children will need to suffer so this state employee can buy another Mercedes!

Wow...

Just wow.

Looking Good!

Check out our vinyl window decal for our van! Awesome!

www.ososplendid.com took our custom design and made it for us!

Wanna show your support? Let us know! We can hook you up with an NSVAR decal!

Last Fridays WHAG News spot

For some reason, WHAG did not post the video from the news story... Here's the transcript of the story:

BOYCE, VA - Jack Starry and his wife Mary work around the clock to care for their son JT, who has autism. He works just as hard in his fight to keep the state from closing the Winchester Child Development Clinic for good. 

"Why was there no other fat in their budget and they decided to go for the Child Development Clinic," Starry questions.

Starry's petition against the closing has gained more than 6,800 signatures. The Virginia Department of Health has responded and they are standing behind their decision.

"This statement here does not address any of the concerns that we put forth on the petition," Starry says of the VDH's response.

In a statement to WHAG, Dr. Lauri Kalanges, the director of family health services for the Virginia Department of Health says that tight funding contributed to the decision to close the Winchester office. She says the VDH found that contractors were able to see more children than local CDC's partly because they have more "flexibility in staffing and in tailoring the evaluation to the specific needs of each child." After evaluating different models she says the VDH "determined that the program goals of serving as many children as possible and identifying children with developmental delays as young as possible would be best served by transitioning to a contractor-based model."  

"I'm going to be contacting her directly, Dr. Lauri Kalanges, and figure out what can be done," Starry says. "How we can change this? I'm going to ask her about the logistics of absorbing so many CDC's to be seen at JMU. How they're going to be able to see more children, taking on so many different case loads from so many different areas? When you take more case loads, you're bogging yourself down. You're not opening yourself to be more productive." 

Starry also has the support of local state Senator Jill Vogel, (R-27th district). She says in a phone interview nothing is more important to her than keeping the local CDC open. 

"For those who would argue that this is a resource matter and moving it geographically, that is not undermining people's access to the services, that couldn't be farther from the truth," Vogel says. "If you make it so that it is not accessible, many many families won't be able to travel." 

Vogel says she plans to fight with Starry to change the decision and keep services local. 

_______________________________________________________________________

If you got the chance to read my last blog, you will see my response to the Department of Health... And I STILL HAVEN'T GOTTEN A RESPONSE!!!

My response to the VDH

In my previous blog post, I uploaded the response I got from the Virginia Department of Health. <--- click to see it.

Below is my response. Along with the addressees mentioned below, it was also sent to 3 different news outlets, Senator Jill Vogel and Delegate Beverly Sherwood.

Tell me what you think in the comments section below this blog post...



Greetings Dr. Kalanges , Mrs. Dallas and Commissioner Romero,

I received the response to the petition with over 5800 signatures at the time of printing (currently over 6800) that was sent to you recently. To be honest, I was disappointed that NONE of the issues mentioned in the petition cover letter were addressed. I was hoping for some clarity on the matter.

1) "In conducting an evaluation of our services, we determined that virtually all of the children seen have some form of insurance; Medicaid, FAMIS, or commercial insurance."

That is a statement which has no bearing to the issues presented. Agreed, alot of the families have some sort of coverage for their children... that's how they got to the CDC in the first place! Medicaid covered the testing/evaluation for my sons DD Waiver eval. It doesn't change the fact that families needing these services in the future will need to A) Take 3 entire days off of work to make the trips to Harrisonburg for the 3 needed visits. Gas expense, loss of 3 days wages, specialized child care for TWO of the three days are all to be included in that concern. B) The potential trauma to the patient in question. A lengthy trip down, 6 hours (conservatively) of evaluation and then a lengthy trip back. Uncomfortable and exhausting for a NT (neurotypical) person. TRAUMATIC for people with special needs.

2) "We also found that our contractors were seeing significantly more children, when compared with the local health department Child Development Evaluation model."

Less centers + absorption of multiple CDCs to those already overburdened centers = longer waiting lists and even more so overburdened centers. How can this be more efficient? More people in less centers doesn't make sense at all from an efficiency standpoint.

3) "As the funding for programs has tightened, VDH has been identifying opportunities to continue to meet pediatric developmental needs in the most efficient and cost-effective manner."

The most pressing question about that statement is this: It is known that the VDH was told to make budget cuts, but not HOW and WHERE to make such cuts. Why did you go for special needs children? What was passed over in favor of the CDCs? I'm hoping that your budget for the past few years is a matter of public record, because I would most certainly like to see it. Additionally, the families which have no choice but to find a way down to JMU may be utilizing Logisticare. So... medicaid will be billing the VDH (your budget) to either A) pay for gas OR B) pay for gas AND the driver provided thru Logisticare AND maintenance on the vehicles. And C) potentially pay for lodging. Not to mention your "private contractors" who almost certainly dont fall under the state employee pay scale. I'd be willing to bet that they earn a bit more than state employees. Apparently, what you are "saving in the front end, you are paying for in the back end"

So, here is what closing the CDC will REALLY accomplish: Blue collar families who CAN'T afford the time-off/gas/specialized child care will NOT BE ABLE go to Harrisonburg to have their children evaluated. These children will not be able to receive the essential services needed to help them grow to be capable / well adjusted / productive citizens of this state. You are potentially ruining the future for numerous children and adults in the state of Virginia, and the lives of their families as well.

Please keep in mind that these closures impact A LOT of people. Intellectually Disabled as well as Developmentally Disabled. ALL wonderful people and ALL deserving of an opportunity to improve/grow/participate in their communities. Closing the CDC will keep that from happening for many.

The good part is that YOU have the power and the opportunity to fix that. I'm certain that you made these initial changes, not knowing the adverse effect it would have upon the population. And I'm doubly certain you would NEVER want to negatively impact special needs children and adults. Am I correct? I sincerely hope so.

I appreciate your time and eagerly await your response!

Friends and Enemies...

While I was in the hospital a few days ago, I was contacted by WHAG reporter Hayley Mason. She had contacted the Virginia Department of Health and told them that she wanted a response to the petition I had sent to them. She informed them that wether they responded or not, she would do the story. The body of that response is on my previous blog <--- click to read it. She also came to my home and got my response to the VDH statement... Click to read the WHAG news story

Today, I received my response from them:

CLICK TO ENLARGE

junk, huh? Doesn't even come close to addressing the issues laid out in the petition! They will be hearing from me, you can take that to the bank! Want to speak out with me??? The contact info at the bottom of that letter is Sidnee Dallas, 804-864-7716 and Sidnee.Dallas@vdh.virginia.gov

On the other end of that spectrum... Delegate Beverly Sherwood sent a letter thanking me for personally delivering the petition, and enclosed a copy of a letter she sent to the Commissioner of the VDH. 

How's that for awesome???

If you read the WHAG news story I linked at the top of this blog, you will see that Senator Jill Vogel chimed in, defending the CDC and throwing her hat into the ring to fight for us!

If you are having difficulty reading these letters, you can find them in the photo albums on NSVARs Facebook Page

I am very thankful for the support shown by Senator Vogel and Delegate Sherwood! And I certainly hope the families affected by the CDC closure are as well! 

GOOD DEEDS DO NOT GO UN-NOTICED!!!

Bull!!!

As I sit in the hospital tonight, wires stuck to me and tubes sticking out of me, I get the response from the Virginia Department of Health. A "canned" response at best:

The Virginia Department of Health (VDH) understands the concerns expressed by Mr. Jack Starry and others, regarding the closure of the Child Development Clinic in Winchester.

VDH has a longstanding commitment to providing quality assessments to meet the pediatric development needs of Virginia's children. As noted in previous communications, VDH has historically provided pediatric developmental assessment services through a statewide system that has included both local health department clinics and private contractors.

As the funding for programs has tightened, VDH has been identifying opportunities to continue to meet pediatric developmental needs in the most efficient and cost-effective manner. In conducting an evaluation of our services, we determined that virtually all of the children seen have some form of insurance; Medicaid, FAMIS, or commercial insurance. We also found that our contractors were seeing significantly more children, when compared with the local health department Child Development Evaluation model. This is in part due to the contractors having greater flexibility in staffing and in their tailoring the evaluation to the specific needs of each individual child. As we examined the relative productivity of the different models, we determined that the program goals of serving as many children as possible and identifying children with developmental delays as young as possible would be best served by transitioning to a contractor-based model.

While we recognize that this transition will mean that some families will need to travel greater distances to complete evaluations, we believe that this is the best option to maintain the financial viability of the child development centers while continuing to maintain the highest quality of care.

VDH is committed to assuring the ongoing quality and accessibility of child development services and we will be monitoring the performance of our contractors on a quarterly basis to assure that they continue to meet the standards that VDH and their constituents have come to expect."

Lauri Kalanges, MD MPH Acting Director, Office of Family Health Services Deputy Director, Office of Family Health Services Virginia Department of Health

So...
1. I want to see the budget BEFORE and AFTER these cuts were made. I want to see what was passed over in favor of the decision to cut the CDC.

2. Speaking of cuts... You were told to make cuts, but not told where or what to cut. So you went for the special needs children first?

Can you say "heartless"?

This isn't over. Not by a long shot...

We've been ALL OVER the news lately!

WOW!!! We have gotten ALOT of attention lately! Fighting to keep the Winchester Child Development Center open has gotten alot of news coverage!

If you havent seen yet (and its kinda hard not to, LOL) We have been on TV3 Winchester, see the previous blog post HERE for the video.

We have been on the front page of the Northern Virginia Daily Saturday Edition <--- click to see the article!

We were on WHAG News on Friday 5/24:

We were also in the Winchester Star this past week! www.winchesterstar.com (online viewing is by subscription only, though)

I want to thank Shelley Drago and Sharon Hanks for fighting the good fight alongside me. Also want to thank Hattie Cheek from TV3 Winchester, Hayley Mason from WHAG and Kim Walter from the Northern Virginia Daily for helping to bring much needed attention to the issue. My awesome wife for doing tons of work behind the scenes and my great friend Adam Pristel for helping with all the news videos and our website www.nsvar.org (By the way, www.nsvar.org , www.nsvar.net , www.nsvar.info and www.nsvar.us are all ours, and redirect to the site! Thanks Adam!) HUGE thanks to "The God Mother" for all the back work in preparing the petitions!

Everyone who has signed the petition so far... THANK YOU SO VERY MUCH!!!

Now the fight really starts... the Commissioner of the Virginia Department of Health is preparing their "response" to our petition. It better be a favorable one, or the teeth are coming out...

It could get ugly.

Cautiously Optimistic

Today was the day. Petitions were hand delivered and mailed. Our fight to keep the Child Development Center just got even more serious.

I had the opportunity to speak with Delegate Beverly Sherwoods assistant who shed some light onto the reason for the proposed CDC closing. She told me that the Virginia Health Department had been told to make budget cuts... but not told WHAT to cut. For some strange reason, they cut funding to special needs children? What? I'm stymied as to why that decision would be made.

I then visited Virginia State Senator Jill Vogel. I had TV3 Winchester with me during the visit. She stated that she will fight with us to save the CDC. She informed me that she was the one to fight for the inclusion of Autism as a covered insurance item/condition. She took the time to sit with me and listen to everything I had to say about the importance of EVERY SINGLE SIGNATURE on the petition. She gave me a number to reach her directly whenever I needed to, and to keep her updated as to the progress.

I really hope she stands with us in this fight. We could use the "Weight" her influence brings with it.

And like I said in the video... I WILL keep fighting.

Wow... Just wow...

I went to sleep last night very happy with the petition. it was 855 when I went to bed. when I woke up it was 911 and I was pleased.

about 2 hours later I check on my phone and the petition is up to 1850! I honestly thought there was an error somewhere so I called my wife to check the total. It was right!

what's even more amazing is that it's not even 3 p.m. and we have over 4000 signatures!

whoever you are out there sharing it so much thank you thank you thank you!

Gaining momentum!

I have been completely amazed today! When I woke up this morning, the petition to save the Winchester CDC was at a relatively stagnant 325 signatures.

As of 9:44 PM Wednesday night 5/15/13 we are at 855!!!!!!!!

Speaking with a close friend whom Im not sure I can name right now for a plethora of reasons... I was told that never before have they seen such strength in the #autism community in Winchester, Virginia! I feel good about advocating for my son and for all the wonderful kids served by the CDC. I want to make a difference. I started www.nsvar.org to help families.

I also told my friend today that I couldn't walk away from all those beautiful kids. Not when I have the intestinal fortitude to say something.

Looks like Im not the only one... There's at least 855 others right behind me!

Let me tell you about group apathy...

Yesterday I had the chance to be on tv3 Winchester along with the parents of other special needs children in the area. Mothers of beautiful wonderful children who will be affected by the closing of the Child Development Center. We sat in a room with Hattie Cheek, the news reporter, and we poured our hearts out to her. I talked about our experiences with the CDC and how wonderful that resource is in our town. The two mothers, Shelly and Sharon, spoke of the brick wall they ran into because the center is closing. Shelly is fighting to get her son tested because the Frederick County school system won't do it! Sharon need a letter of medical necessity to get her son the help he needs. She now has to go to the back of the line... and we were especially fortunate to have Audrey with us. This sweet lady took time on her birthday weekend, and don't forget it was Mother's Day too, to come in and share her expertise. We explained to Hattie that the CDC doesn't just help children with autism... it helps people with other intellectual disabilities as well. There are a lot of families that will suffer with the closing of this facility.

And here's what really gets me: I am almost 100 percent certain that everybody in this town knows someone with a child that has special needs. And if you don't know them yet, you will. Yet people are completely happy to sit with their hands in their lap, watching these families struggle. They are certain that someone else will step in and help with the problem. Is it so terribly difficult to sign the petition and share it with your friends and family? Is it so difficult to stand up for those beautiful children who can't stand up for themselves?

A long time ago in New York City, a young girl was raped and murdered in broad daylight with 25 witnesses standing idly by. Each one of those witnesses thought someone else was going to do something... they did...They stood by and watched that poor girl die. Group apathy. Disgusting.

What is it going to take for people to stand up for what's right?

I told Hattie last night that we weren't going away without a fight. I'm fighting for my son, for my friends sons and daughters, for the  little babies who haven't been diagnosed yet as well as for the parents who would walk through hell with bare feet just to make sure their child has every opportunity to succeed in life.

Will you fight with me? Make a phone call or send a letter to anyone in the position of authority that may have some influence. If you're not sure, call and mail them anyways! Go to NSVAR.org and click the link for the petition. Sign it, and then share it with your family and friends.

Please. We need your help.