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?
  


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  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

Off Topic: My Wife's New Family Blog

No, I don't mean my wife has a new family (though sometimes I see her daydreaming...). Lori has decided to throw her hat into the blogging fray with her new blog Nothing More, Nothing Less.

In it she talks a little bit about each of our kids, her frustrations and fears, her attempt at tackling college with all that's going on around us, and putting up with me (which, I would have thought would have been the most pleasurable of experiences...you think you know someone).

Anyhow, if you get a chance, please stop by her blog and give her your thoughts, encouragement and suggestions. Oh, and remind her what a great guy I am.

Really.

Do it.

Please...

~Jon

Some December Tidbits from "Same Child, Different Day"

I just realized that this must have been a busy month. I haven't posted anything in almost 4 weeks which, no matter what has been going on, is a rarity for me! There has been much ado in both our autism and non-autism worlds, and I guess time just got away from me. I mean, holy cow! Can you believe another Christmas has come and gone? Here's where we were last year with this blog: Same Child, Different Day Content - I was still describing the chapters of the booklet and was only on the 4th post! This is the 45th post, and so many people say they have been helped by both this blog and the booklet "Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis": Review, Reader Critiques, Global Reach, Radio Interview.

I wish I could write more often; I should write more often. But I can only do what I can do. As I have done once before (and am sure I will do again), here are a few tidbits from the past few weeks, both related and unrelated to our autism work --- because it all relates, doesn't it?

• Our new business is forming nicely! I'm just waiting for the VT tax department to get back with me on a couple questions, and I need to finish designing one form on my end. I have a meeting with BROC Micro-business --- a free, community-based service in our city which helps new entrepreneurs --- on January 7. If this all works out (and it has to), in the end it will mean much more time to spend with the family. God knows, Lori could use the help! How do you manage work and therapies?
• Speaking of Lori, she'll be starting college in the summer. She'll attend the Community College of Vermont and is looking to concentrate on Pediatric Physical Therapy. Has dealing with autism inspired you in any way?
• I published an article on Associated Content in opposition to our state Medicaid department making the unilateral decision to reduce Nolan's coverage. Since our local papers wouldn't print it, I took it online. One reader was prolific in her comments, and feels that my opposition is counter to the best interests of Nolan. I tried to explain the crux of the article regards the state agency making an unqualified reduction. The commenter implied that, regardless of the entity making the decision, we are using our therapists as a crutch. Please slide over to the article and post your comments. I value your opinions.
• We wrote a 4-page letter to the state, requesting they reconsider the above decision. Surprisingly, a week later they wrote back that they had, and his services are once-again covered to an acceptable level. Tell us if you have ever had to battle with state agencies.
• Then, we found out from our private insurance company that they (the insurance company) should not have been covering Nolan's services based on his diagnosis. So, to make an already-frustrating situation even worse, I'll have to battle with them, along with my illiterate state legislature that doesn't believe autism should be covered by insurance. Does your state require insurance companies to cover autism therapy services?
• (Downer Alert!) We found Christmas to be tough this year. As far as I'm concerned, Christmas in our house is about the kids. Lori and I like to give each other gifts, too. But as long as the kids get taken care of, and are excited Christmas morning, our job is done. Well this year we were looking for a great reaction from Nolan, based on some of the strides he has recently made. We'd hoped, anyhow. Instead, while his sisters eagerly tore open gifts and screeched happily, Nolan paced the house, covering his ears and making noises akin to Taz of Looney Tunes fame. He did play for hours with one of the toys we bought for him (an inflatable ball pit with a tower and "ball" waterfall), but somehow, it just wasn't the same. My good friend Deanna, who is always the most wonderful voice of support, encouraged on Twitter, "you may have a long way to go, but remember the journey is worth it. Sometimes hard to do, I know...". You can say that again, Deanna! Tell us about times the frustrastration that can be associated with autism has affected your family and how you have coped.

~Jon

Autism: A Speech Milestone

We all know that coping with speech issues can be a priority issue for most families living with autism. Getting these kids to repeat words can be a milestone, never mind having them utter a spontaneous sentence. Nolan shared some spontaneity back in September that prompted me to post this short article.

Since then his speech has been getting better, and he has been repeating a lot of things we say. He's also been doing a great job of responding to different questions we ask, and his replies have been quite appropriate. But getting him to just say a sentence is something we had yet to experience. Until today.

We wait for the bus with Nolan and his sister about a block from our house. Since its been getting colder, we've been standing by in the idling, warm Jeep. Nolan knows when we see the bus turn up School Street toward us, it's time to unbuckle and get outside. Usually, we have to ask him, "Is that the bus, Nolan?" He will of course, answer, "Yes."

Today was a shock. A big, in your face, exciting shock. As the big yellow tube headed for us, Nolan said most assuredly, "Look, I see the bus." Now, some of the words were garbled, and he dropped a few consonants, but he said it all by himself! No prompting. No questions asked. Since Mom and I were both reading, we hadn't even seen the bus for ourselves yet. This was all Nolan. And it was wonderful.

Who knows when the next sentence will happen? I don't even think I care. To me, this says that he has an excellent chance of "making it", to overuse a phrase. Whatever...we're proud of him.

Good stuff, huh?

~Jon