Same Child, Different Day II: Doing what I do best

Stay with me for a minute...this really is going somewhere.

You are all wonderful. Your comments on the blog Same Child, Different Day have been thoughtful and inspiring. And your remarks regarding the booklet Same Child, Different Day have been nothing but encouraging. Follow that up with the fact that there is so much more to say, and so many more people who need to hear what needs to be said. Autism is not going away in the foreseeable future, and our loved ones are everywhere.

We have had discussions regarding potty training, I've written articles about autism in public, we've ventured into the world of politics, and I never even told you about the time 1) the school forgot to put Nolan on the bus and --- 2) he was almost "expelled" (he's a special needs kindergartner) for a day (or two). All the while, I've been reaching an audience who already lives it.

That's not bad, in and of itself. However, if ever we're going to bring awareness about that which is autism, it's the "other people" I/we need to reach.

So...I've been writing a book...again.

Tentatively titled Fishing for Nolan, it's both an expansion of the booklet Same Child, Different Day, and at the same time is it is a completely new work. For one thing, Fishing, which this time will be a full-length "memoir", looks at autism from a father's perspective. As the Product Description for Breaking Autism's Barriers (Bill Davis, Jessica Kingsley Pub, Feb, 2001) denotes, "Few books about autism have been written from a father's perspective." Fishing also takes on a different tone than Not My Boy (Rodney Peete, Hyperion, Mar, 2010). While Not My Boy looks at the issue through a cause-and-effect lens, Fishing takes a more anecdotal, open-minded approach.

While we, too, have our beliefs about Nolan's diagnosis, this book is geared more toward the general reader. I've pointed this book in the direction of public awareness.

So, there you have it. Over the next few months, I will be glued to this chair in an effort to bring our story to you (and in a more ambitious way, to the rest of the World). I appreciate your continued support ... because without all of you, this never would have been possible!

Thanks, Everyone.

~Jon

Happy 6th Birthday Nolan

As I get into my adult years, I like to think of my birthday as more about my Mom than about me. I mean honestly, do I want to keep counting them anyhow? I've had enough birthdays to see the inaugurations of ten presidents (and participate in votes for half of them), see the start and end of America's space shuttle program, watch as personal computers grew by shrinking (from the TRS-80 to the iPad), and to be called "people your age". So, to say that I no longer experience the same thrill from each new birthday as I once did would understate the truth.

The same goes for the first few birthdays as a new parent. For me, at least, the little ones were still young enough that they didn't feel the full thrill behind the streamers, crepe paper, pastel cakes, gift wrap and party hats. Those first couple of celebrations (maybe numbers one and two) were for us, the Parents. Admit it. Even you found some gratification (and maybe a little selfish pride) from the attention doted on you, Mom and Dad, in the name of your precious little angel.

But at a certain age, that doting turns toward the kids, which is as it should be. They acknowledge the gifts they receive with smiles by the pound. Their laughter, the screeches --- all approval for of a job well done. At that time, its all about the kid. Or, at least, it should be.

Not in our house; not with Nolan. Today is Nolan's birthday, and for us it was simply the day after yesterday. There were no giggles after tearing into a package. Last night we heard no sound of anticipation; no "Daddy, tomorrow's my birthday" or "what did you get me, Mom?". He can't tell us what he wants, so he doesn't screech in excitement when he gets it.

We tried to liven up tonight with a trip to Applebee's --- mainly because they sing that familiar birthday cadence (the one that only the people embarrassing the birthday-ee enjoy). Instead of smiling from ear-to-ear, he covered them with his hands. Not the reaction we were hoping for.

A friend told me today that he's adorable, and the fact that he doesn't get the same emotion from birthdays as other kids doesn't matter; that he loves and respects us anyhow. I know she was trying to help; I really do. But its little comfort to parents who want their children to experience joy; parents on this side of the fence. Birthdays, Christmas, even Easter Egg Hunts.

Nolan's sisters and his cousins traipsed the yard outside Grandma's house this past weekend looking for hidden plastic eggs. But to get Nolan to do so meant breaking him away from SpongeBob. He took five minutes to find twelve eggs; then he was back in his pineapple under the sea.

Maybe that explains why no one --- not anyone --- called him for his birthday, either. It was probably figured he wouldn't understand the reason for the call, anyhow. Maybe not. But I would have known.

Not that it matters, since at that age it's about the kids anyhow.

~Jon

Autism: The New Discrimination

About a year ago, I talked you you about autism insurance legislation that was being proposed (finally) by the State of Vermont (click here to read the post). Quite intelligently, our legislators chose to pass this monumental reform. Fast forward several months, and now our Governor (formerly one of the senators who pushed this legislation) has proposed rescinding this legislation.

Why, you ask? It's the same old 'why': $$Money$$. Apparently, what was essential a year ago is now too expensive to fund. You see, Vermont is considering single-payer helthcare. So, what previously would have been legislation that would have placed the oness on insurance companies, now --- should single payer pass --- now has the potential to put the financial "burden", so to speak, on the state.

I don't care.

Autism isn't a political issue and coverage shouldn't even be debated. Why are our children and families --- people living with a diagnosis not brought about by any careless outside force --- discriminated against, and yet states have chosen to assure the coverage of alcohol and drug treatments?

I think it's a good question. It's one I asked Governor Shumlin in a letter I'm mailing Monday. I asked him a few others in the letter as well (including a couple "what ifs"). Now here's hoping the letter will even make it into his hands. I'll ask for your help by posting a link to this article on Facebook & Twitter.

I'll let you know in a couple weeks how it's going.

~Jon

Autism Awareness: Define "normal"

We're three weeks away from Autism Awareness Month and World Autism Awareness Day. There's a push for folks to wear blue on April 2, and buildings from the Empire State Building to the Sydney Opera House will be bathed in an azure wash. There's even a call to add a cobalt hue to the White House. Here in my home town of Rutland, Vermont we will again be hosting "Celebrate the Spectrum", a full month of community-based events and activities centered around autism awareness.

Hopefully, there will be something to show for all of this awareness advocacy. The question is: will it ever be more than blue shirts, awareness ribbons, support walks and sound bytes? I hope so. But, when there isn't a month supporting my son and those like him, other questions abound.

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  My son walks normally, not with a limp. Why would he warrant a "handicapped" tag?
  



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  He looks just like any other normal kid on the playground. Why doesn't he play kickball with the other boys?
  


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  He doesn't come into the restaurant in a wheelchair. Why can't he just sit normally like his two quiet sisters?



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  Every other normal person in the room is whispering amongst themselves. So, why does he have to sing and hum so loudly, and keep beating his hands on the wall?
  


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  Why can't we just let go of his hand like any other normal kid?
  


• 
  
  He just looks so ... normal.
  

There's the issue. Autistics (or those with autism, or however you choose to phrase it) don't look different than anyone else in the room. No curved spine. No wheelchair. No Cochlear Implant or hearing aid. No guide animal or white cane. Nothing to identify that they are facing what you and I would consider a challenge.

Once the ribbons have faded, the walks have wrapped, the donations have been tallied, and the light bulbs replaced with the color of the next support event, our loved ones living with autism will go back to looking normal. And, when they have a meltdown in the middle of Costco because the humming fluorescents and PA systems became too much, we will go back to being the parents who can't control "that unruly child".

Because memories fade, and human nature is in us all.

I guess that's just normal.

~Jon

Same Child Different Day: Back after a long break

Hello all my friends and fellow bloggers. After over 10 months away from the site, I'm back to doing what I do best: advocating and bringing important autism support and info here for you! I am sincerely sorry I took time away, though it was not all in vain, I assure you.

I was working hard to bring a new business concept to Vermont, one that I had hoped would both be a benefit to others (what I like to do anyhow), and would in turn afford me time to spend with my loved ones; those closest to me who need my help the most. While I have not given up entirely on this Vermont home inventory venture (Permanence), I have had to scale back my time. The results currently are not relative to the effort.

Anyhow. That doesn't have much to do with "Same Child, Different Day" specifically. To get back into the groove, I'll just post today that I'm coming back, and am bringing our local autism support group back with me. Exceptional Parents of Exceptional Children (EPEC) is the Rutland, VT area's primary 'spectrum' support organization. This, too, has been on hiatus due to family concerns for both myself and my co-chair.

But we are coming back, ready and able to support the needs of families, caregivers and those living with autism in the Rutland, Vermont and surrounding areas.

I'll be back with more info soon about other supports. But I wanted to let all of you know that I have missed talking and sharing with you. I won't let that happen again!

All the best,
~Jon

Calling All Vermonters: Whether or not you are or know someone who is living with autism

As quoted from the Vermont Citizen Coalition on Autism Reform

We Need Your Help!

On Friday, March 12, the Senate Finance Committee voted an amended version of S262 (Autism Insurance Reform) out of committee. Disappointingly, this amended bill sidesteps the issue and calls for yet another study! It is being sent to the VT House of Representatives to be taken up by the House Committee on Health.

However, there is still hope for Autism Insurance Reform! This amended bill may be amended yet again! We are giving the House Clerk our original bill, along with our voluminous research findings, and asking them to take it up and work with us to craft a feasible bill, one that would be accepted by the House and Senate Joint Conference Committee.

Getting people to call or write to both Steve Maier, House Health Chair, and Shap Smith, Speaker of House, in support of the original bill, S262 Autism Insurance Reform, will be very important. We need you to share your stories, and say again and again that:

<> Autism is a medical/neurological condition that impedes a child’s ability to learn. Effective treatments exist. Insurance companies are discriminating against this particular condition and that is why we need this bill.

<> This bill has no affect on the State budget – It is budget-neutral. Furthermore, we believe it will save money for educational agencies in the long term by front-loading treatment and thereby decreasing the long term need for intensive support in school.

<> By providing an insurance payment mechanism, this bill will have the effect of increasing the number and availability of licensed autism treatment providers in Vermont at no cost to state agencies.

<> Schools are sorely pressed to provide the evidence-based treatment that ameliorates the symptoms of autism. They cannot do it alone. By providing access to effective medical treatment, this bill would decrease prohibitively expensive institutional placements. (The average institutional placement carries an annual cost of $279,000.

<> Society benefits by producing employable citizens who are capable of self-directing the course of their life with a lower level of community support and a lowered need for expensive crisis beds at psychiatric institutions.

We thank you all for your support. We believe passage of this bill have a beneficial ripple effect on many issues facing the autism community.

If you have questions, would like more information or would like to help us soldier, please email me here!!!

~ Thanks, Jon

Vermont Autism Insurance Reform Bill: S-262

Oh my gosh! In Blogdom, I have committed the ultimate sin: it has been nearly two months since I have posted! I'd might as well just board up the windows and put a chain on the doors.

Or I could explain to you that, between starting a business (which is a much more consuming task than I could have ever imagined) and pushing for autism reforms in my home state of Vermont, I have been overwhelmingly busy. Not an excuse, but I assure you, it has not been time wasted.

As many of you know --- and some of you may not --- services for autism are not currently covered by insurance companies in many states, including Vermont. A bill has been introduced to assure this requirement. At this time however, though the legislators really want to help, they are getting pressure from lobbyists not to do anything now. We are in need of help in getting your support (and that of your representatives and senators) for VT autism insurance bill S-262.

Please call your legislator and the chair of this committee. If you are also a constituent of anyone else on this committee, please call them! Every call counts in tiny Vermont!There are talking points below of why we need this. Please write a handwritten note or a phone call (they count!) to the senators below. This is the week before crossover; when they decide whether to send it to the House or not.

Listen to our recent radio show about this issue with Anne Barbano of "Living the Autism Maze" here: http://livingtheautismmaze.com/radiator_021710.mp3

The narrative of the bill can be read here...or here: http://www.autismvotes.org/atf/cf/%7B2A179B73-96E2-44C3-8816-1B1C0BE5334B%7D/VT%20S-262%20-%20as%20introduced.pdf

The members of the Senate Finance Committee can be found here: Members

Their email addresses can be found by clicking here: Emails

Thanks to all of you and PLEASE HELP where you can and contact me if you need more information.

Same Child, Different Day: Insurance Reform

It's been about three weeks since my last post; something I try not to do. Trust me when I say we have been busy.

First, we have been working on our new home inventory service business (http://www.permanence.webs.com/).

On the autism front however, much of our time has been devoted to supporting and advocating for VT Autism Reform Bill S-262. Today we visited the Senate Finance Committee to provide testimony in favor of this bill.

A post will be coming shortly about this visit, and we'll be asking many of you, especially those of you in Vermont, to jump on board this train. Until then, be good and take care of those who matter.

I'll be back shortly.

~Jon

Autism: Budget Cuts, (Lack of) Insurance Coverage & the Congressman --- in 3D

"Statistics are human beings with the tears wiped off." ~Paul Brodeur, Outrageous Misconduct


For anyone who isn't aware of what autism is, its prevelance, the controversies surrounding it or a person in their lives somehow impacted directly or indirectly by it: Nice to meet you; Welcome to Earth. Now that we have that out of the way, let's jump right into the meat of this post.

Our State is considering various funding cuts in order to trim the budget, and make for a leaner, meaner Vermont. It is true that these are tough econimic times. And admittedly, I'm not one you should consider to suggest where cuts should come from (just ask the folks at my credit union). But I can tell you where those cuts should not come from.

Right now, one of the primary sources under consideration for fat-trimming is our statewide developmental services system. Targeted case management, flexible family funding and developmental service 'waivers' are all trembling under the axe of our Governor James Douglas.

These cut considerations come on the heels of similar recent cost-cutting measures that have already weilded mental health services lay-offs, elimination of whole support departments and 'stacking' of clients with single caregivers. At the same time, hundreds of people poured into the streets and legistative halls to save Amtrak service to our fair state. The choochoo got the green light; the developmental services, not so much.

So, some assistive funds and supports have already been taken away, and there are proposals for more, all forsaking our most vulnerable citizens. All because they are not revenue generators. Yet train service, which is inconsequential when considered as a true 'need', but produces a revenue, is pulled from the chopping block. It doesn't seem logical.

So, while we wait for the State to consider reducing funding and supports that are already just skin-and-bones, those of us who have loved ones living with autism face another dilemma. Vermont is not one of the (few) states that requires insurance companies to cover autism therapies and services. Say what?

That is correct: Vermont currently has no legislation on the books that requires insurance companies to pay for therapies for folks living with autism. As most of the readers here know, 25-40 hours per week of intensive therapies are needed in order for a patient with autism to even have a chance at what we've come to accept as a 'normal' life. Parents and caregivers assist in this equation, providing all the speech, occupational and physical therapies they are able to in their already-hectic lives. But there is no way they could possibly provide all the services even one individual needs.

As you are painfully aware, paying out-of-pocket for just two hours per week of speech therapy could set a family back $600 to $2400 each month. For years.

There is hope, however: A bill (s.262) is circulating the VT Senate that will call for full and unfettered coverage of autism-related services by insurance companies. This bill must pass. And I assure you that I will do all I can to make that happen.

I will also do all I can to assure that the Governor knows that, while it is understood cost-savings must be considered, they should not be made at the expense of many who already are little able to speak or fight for themselves.

As a final note, last month Tammy of Autism Learning Felt began emailing the following letter to Senators from around the country:

"Thank you for taking time to read my email request for information. I am the owner and administrator of AutismLearningFelt, and online publication for parents raising a child with autism. My readers and I would like to know what you are doing to help us.I have a few questions that I would like to ask you and hope you will respond. Your answers will be published on my website within a day or two of your response. Thank you again for your time.

1. When the CDC announced the new autism rates, 1 in 110 children are diagnosed with autism, what were your first thoughts?

2. Services for children with autism are limited and difficult to receive. Most are limited to speech, occupational and speech therapy, yet hardly ever enough of these services to make a big impact for our children. Services like ABA and Floortime therapy are usually not available for our children unless we, the parents, pay for them ourselves. Children that receive at least 20 to 25 hours a week of specialized therapy make more progress than those that do not. What do you intend to do to make government paid specialized therapy services available for our children?

3. Early Intervention is extremely important. Do you have any plans for improving the identification and diagnosis of autism and an earlier age?

4. Autism families need a voice within the government. There are several great organizations that lobby and advocate for us, but we need government officials to take up our cause. Do you have any plans to stand up as a voice for the autism community and bring about more government involvement in addressing the concerns of families raising a child with autism and bringing about practical help for us?

5. Finally, have you considered the time when our children are adults and will require even more help? As parents, we like to think that we will always be here for our children. As our children get older, we realize that soon they will be adults and may become dependent on the government for their care. Do you have any plans to address this issue?"

To put it loosely, I "joined" her in this campaign. However, I have thus far been only able to send one letter: to US Congerssman Peter Welch (D-VT). Thus far Congressman Welch has not replied. Though I am inclined to draw a conclusion as to why we have yet to see his take on the issue, I'll give him the benefit of the doubt for the time being. Suffice it to say however, that we likely may not ever have the pleasure of knowing the Congressman's opinion regarding the questions.

Anyhow, I've gone on long enough. I look forward to your thoughtful comments.

~Jon

For Autistic Children: Graphical Communication Tool for iPod touch and iPhone

A couple times a month I would run into the mom of an autistic boy. She and I would be visiting the same place, and she would have her kids in tow. Verbally, “B” is on the extreme end of the spectrum, and uses an AAC (augmentative and alternative communication) device for speech. It is a Voice Output Communication Aid that utilizes a system similar to the Picture Exchange Communication System (PECS) as an alternative to speech that can identify wants and needs.

I did learn however that these devices can cost upwards of $7,000 to $10,000 dollars. With the insurance coverage for autism sporadic from state to state at this time, for many parents that can be an insurmountable cost. Yet anyone living with a loved one who is even moderately affected by autism knows that much of the frustration lies in not being able to communicate with them. Many rely on PECS cards and American Sign Language as an alternative, but there are parents and caregivers who want nothing more than to be able to “hear” their loved one’s thoughts.

Spectrum Visions presents Voice4U, an AAC application developed for use with iPod touch and iPhone. Voice4U is a $29.99 alternative to the larger, more expensive speech generating devices and comes pre-loaded with 130 icons: just touch the picture and the app sounds out the associated word. The user can access nine categories, with a response that is in a clear, easy-to-listen-to voice.

With the assistance of her son’s tutor, the app was created by the mother of a 15-year-old boy with autism. She built the system to be expandable, with the capability of adding up to 1,000 of the user’s own words and pictures. Additionally, you can change the icons and voices with your own photos and sounds as well, in both Japanese and English. Voice4U is mainly intended for school-age users, though it can serve consumers of all ages

Spectrum Visions Website
Voice4U Website
See the app in action on YouTube