Same Child Different Day: Voted one of the best autism blogs in the industry!

What an Honor and a Surprise.  I opened my email today to find that Same Child, Different Day has been voted by BlogNation.com & Autismblogs.org as one of the best autism blogs on the 'Net!

What an honor.  We even got a cool badge thingy!

One Down, Twelve to Go: Kindergarten Accomplished

Wow. One hundred and eighty days (give or take a snow day) have passed since Nolan started attending (mainstream) school. Thursday marks his last day of Kindergarten, a day that (quite honestly) we once worried we might never see.

We had questions last autumn before he started. Some were the concerns of any parent; others were unique to our son. We had concerns about field trips, waiting in line for lunch, meltdowns in class, riding the bus, academic comprehension, going to the bathroom (he still struggles with potty training), and making friends. And those are just a few.

Nevertheless, (while Nolan did have several days where we worried about his progress, and sometimes even his status at school) he made it!
o Some field trips that we knew would bore him he had to skip (going to a farm); bowling and swimming however, not a problem.
o There were mornings when we would get to school too early, he wouldn’t wait for the kitchen ladies to get breakfast into the chafing dishes; others days he would actually wait for a friend who was farther back in line.
o Meltdowns were unavoidable, but amazingly, the other kids worked right through it (and in public, many of them would admit aloud, “Mom, that’s my friend Nolan”).
o There were days Lori would have to pick him up from school because Nolan was simply not getting on that bus; another day, the bus simply forgot him.
o This is the boy who couldn’t speak in September; now he writes his name and whole sentences, and even reads!
o Somehow we/they worked through potty training (good luck next year, Angela and Mrs. Swift), and as for friends, if you were reading, you know we just covered that.

Take today for example. There was a Books and Beyond award ceremony at the school today. While everyone gathered in the room, Nolan waited. He waited while kids went to the podium to get their medals. And, when his name was called, Nolan went up to the teacher, dipped his head as she put the ribbon around his neck, and went right back to his seat. I had to work, but Lori saw every tear-squeezing second of it.

When Lori picked the kids up though, she stopped by work to get me first before making the routine trip home. By the time I got to the car, he was in Full Nuclear Meltdown.

But you know what? Even in public, I’m still okay with admitting aloud, “That’s my son, Nolan.”

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

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

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

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

Autism and Medical Marijuana

In my last post, I talked about how we worry our autistic son won't be potty trained before Kindergarten. Matter of fact, I've suggested in another post that there are lots of things we worry about with our kids living with autism; behavior, speech, stimming in public, muscle tone --- they are each things we and they struggle with daily. As parents, we'll go to practically any length to support our kids.

You can believe in cures or not, or you can subscribe to the thought that they simply are who they are. When we say we are willing to advocate for our kids, what do we really mean?

Well, a Rhode Island mom has chosen to go to what others might consider extreme lengths to manage her child's condition. Marie Myung-Ok Lee has helped her son to become the youngest recipient of a medical marijuana license. She first purchased THC-infused olive oil to make cookies for her son, in an effort to stave off his biting and pervasive violent behavior.

Myung-Ok Lee swears this is helping her son and that this is just the intervention he needed.

What is your take on this mother and her radical approach? Is this curing or simply sedating?To what extreme lengths would you go, have you gone or are you considering?

Please share your thoughts and feelings.

~Jon

Thanks to a Loyal Reader for a Review of SCDD

Thanks to avid commenter Corrie Howe. She found Same Child, Different Day interesting and useful enough to post a critique on not one, but two blogs! She tried to post it on an online magazine, but for some reason they wouldn't publish her fine writing.

Regardless, if you'd like to read the critiques, you can check them out on her site "Just Because My Pickle Talks Doesn't Mean I'm an Idiot" and on "Autism Sucks".

Thanks again so much, Corrie!

Florida "Teacher" Suspended for Autism Vote Reinstated

OMG! What are they thinking? Recently Wendy Portillo, a kindergarten teacher from Port St. Lucie, Florida, decided to put to a vote from her students, whether or not an autistic child should be allowed to stay in the classroom. The kids voted 14-2 against the child, and the teacher was later suspended from the classroom.

Good first step, right? Yeah, well...

...seems the school board has decided to REINSTATE this dummy and relocate her to sixth grade. Yeah, that'll help.

This stupidhead is still being allowed to teach because she has tenure, and doesn't see the error of her ways. And the school board was freaking unanimous in their decision to let her back on board. Can you believe it?

So, you have a six year old kid in your class who is disruptive of the other kids, and you ask them to vote on whether or not the child should be allowed to stay in. No parental involvement. You don't ask the school clinician. The principal isn't brought on board. You just arbitrarily ask your students to make the decision. I'm sorry but, who is this moron?

If the kid was a distraction because of his clothing, or wheelchair, or burn scars, or speech impediment, or --- God forbid --- skin color, would this teacher have committed the same moronic decision? Hard to say, since it happened once with this child. But I guess worse than her choice was the choice of the school board to --- again I say --- unanimously decide that, sure, she's a great teacher and should be allowed to traipse back into a classroom and be allowed to wield her judgemental opinions on any child that happens through the door.

All this after a judge upheld her loss of tenure! Woe unto any child who doesn't fit this anus' mold (if you can't tell, she's pissed me off). And "teacher"? What is it that she teaches her students? Intolerance? Judgement? Discrimination? Stupidity? The voting process?

Please link this story, post about it, make it known, Tweet and Retweet it...Email (you can get a list of departments by clicking here) or phone the Port St. Lucie school board (772-340-7100 by the way).

Please sound off...let me know what you think! And I'll link your stories back here if you post them, k?

Thanks for indulging me.

~Jon