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...