Same Child, Different Day

Autism: A Family Affair

2012-01-29T23:04:00.000-05:00

I don’t mentionit much here; heck, I’ve gone back through my posts and don’t see that I’veever mentioned it once. Nolan isn’t ouronly one on the spectrum. His oldersister Madison was diagnosed a little over a year ago when she was almostseven. I don’t think to ever mention herautism for a few reasons.

First of all,she is lucky to even be alive. She was scheduledto be born January 29, 2004 (today would be her 8^thbirthday), butshe couldn’t wait. She came to us insteadin November, 2003 – three months early at 27 weeks plus five days. She was 14 inches long, and tipped the scalesat a meager 2 pounds four ounces (sugar is heavier, but not nearly assweet). For her first two years we werefully focused on keeping her alive.

Since then,aside from some minor medical concerns and a demure size that belies her energylevel, she’s progressed at a fairly steady rate. She’s scarily intelligent and (as far as therest of the World knows) is the happiest of all Earth’s creatures. But, there have been things that caused us toworry about her.

She hand flapslike she’s trying to take off; she has trouble with the appropriateness of someof her conversations; Mad is friends with other kids, but gets lost when she’spressed to understand social cues; she repeats, repeats, repeats; she can’trecall the “morning drill” on her own from day to day; she is literally distracted by shiny things (woeunto the mirror hanging on our bathroom door)…and the list goes on.

A couple yearsago, we had her tested by the same folks who ran the series on Nolan. While Mad’s level of autism barely mirrorsher brother’s, we never doubted our concerns. Not that we want even one on the spectrum, let alone two. Nevertheless, her diagnosis has helped us outwhen it came time to get her some therapies she has since benefitted from.

Still, it’stough from day to day to think that she is even autistic (or has autism orwhatever you prefer to read). But, shehas been diagnosed and she is. I don’tknow why I felt the need to bring that up, other than today is January 29 andit got me thinking…

~Jon

Choices We've Had to Make

2011-10-09T10:28:00.000-04:00

Any of us in the autism community knows that, in order to achieve really substantial success, our kids need 25-40 hours per week of intensive therapy. Ideally, this comes from therapeutic centers and licensed, school trained providers. Hopefully, they are able to receive services at in a clinic environment, filled with tools and equipment specifically designed for speech, occupational and physical therapies. At one time, this was the situation we were fortunate to be in.

Sadly, as with all good things, over time this perfect situation came to a slow but inevitable end. First, the amount of time allotted for their therapies whittled down. From a couple times a week, to barely once every other week, the services soon became glimpses in time.

Next, the clinic closed. A unilateral decision was made that in-home care would be of the most benefit to our kids. The gym, equipment and tools were considered overkill and unnecessary; according to the private therapy organization that provided these services, the therapists themselves could offer all the tools needed for our children’s successes.

Then, these home visits every other week went from a one-hour session to 20-40 minutes per visit. Our providers would show up, spend about 7-10 minutes doing administrative work on their laptops, then our kiddoes would engage in twenty or so minutes of therapy, and finally, 10 more follow-up minutes would be taken to wrap up the computer’s administrative needs.

It was then that we made the unilateral decision to pull our kids out of these formal services. Twenty minutes every other week was doing them no good, and was becoming more of a pain than benefit. We had to break our day up that one time every other week, with basically no benefit from the meeting. Fortunately, we have, over many years, developed a fairly well-stocked therapy gym and have a pretty good supply of tools. Lori and I have been very consistent with our own therapy schedules for the kids, and they get a pretty good array of help from their school.

It’s been a little over a month since we parted ways with the ‘clinic’. The sun still rises and moon still shines. And --- can you believe it? --- the kids are still developing in in ways we never could have imagined.

While we’ve had some pushback from here and there regarding a lack formal services, we don’t see the problem.

Anymore.

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

2011-09-27T22:57:00.003-04:00

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!

Autism: The things some people say, Part IV

2011-09-26T00:54:00.000-04:00

Grocery shopping for us has never been a boring event for us. Heck, take this incident from a few years ago as an example. Today we still have to do everything we can to minimize the chaos we can bring during any shopping trip.

One of the things we do, and that helps us immensely (and in turn helps you), is to put Nolan into the basket part of an extra shopping cart. We've tried to let him help us push the cart, and grab things off the shelf. But, that doesn't always turn out so well. Note: We also refuse to make him stay home every time we shop. Then it wouldn't be "we" anyhow; since a reliable PCA is nearly impossible to find, it would end up being "me" or "her". And, while shopping alone can be quicker, its just one of those things we do together. So, all 100 pounds of Nolan ends up in a shopping cart he shares with his sister, who still fits in the seat.

Understandably, you can imagine the looks we get from putting our child in the back of the cart. The message on the handle of the shopping cart reminds us what we are doing is not suggested. The loudspeaker is also good about scolding violators with regular chastisements. Even as we turn the corner at the endcap between the pasta and bread aisles, I shudder in angst as I expect the girl stocking the milk to PIT maneuver our cart into the chocolate bars, strip off her apron, brandish a Shopping Cart Police badge, shove a price gun in my face and call for the Parking Lot Guy to back her up by surrounding us with a ring of carts he just rescued from the corrals.

Sadly, as they would be reading me my rights and calling the Department of Children and Families to save my children from their plight, the Point of Purchase Tactical Response Team (P.o.P.Ta.R.T) would miss the true criminals cruising the aisles right under their noses. Those people?
Dog Owners. (I like dogs and most of their owners --- let me explain!)

You see, we recently had One of Those Days in our local Aisles-o-Plenty where we received repeated comments, glances and observations about hauling our autistic son through the store in the basket of the cart. Ironically, one of these commentaries came from someone with a "baby" of their own in the shopping trolley. Granted, their precious little one was in the child-safe portion of the carriage. But, it was not a baby by the definition I would use. Their "baby" was a furry, tailed little creature with a runny nose and a flea collar.

The last time I checked, it was suggested we not place our human child in the grocery section of the carriage. But, clearly marked in the doors of the entrance to nearly every grocery outlet in America, it is a health code violation to carry your pet into the store. I won't even get into my opinion regarding bringing a domesticated animal into an establishment where food is sold. I won't debate between the terms "pet" and "companion". And, based on the level of REM sleep this one was expreiencing, I doubt sincerely this was a dog who was on the clock.

The question I want to ask is, how does putting my autistic son in the basket of a shopping cart to make a better shopping experience for us and the other shoppers, warrant negative reaction (especially when, by doing this, there will be less chance you will have to interact with him than if he was not in the cart)? However, the pet owner who carries an animal through the store in the shopping basket, clearly and obviously in violation of state health laws, gets told "what a cute baby" and doesn't see the contradiction when personally reminding us of our own transgression.

My one suggestion: don't be surprised if P.o.P.Ta.R.T is there when your "baby" makes an accident on the floor. Unless, of course, they are busy frisking me for competitor's coupons.

~Jon

Autism Awareness Survey

2011-09-23T23:06:00.001-04:00

Would you please share about ten minutes to take this important autism awareness survey? There's no cost; there are no vendor links; you will not be asked to buy anything. I'm simply looking for your input to nine short questions regarding autism awareness and I would appreciate your help. It's also totally confidential.

Click here to take survey

Autism: The things some people say, Part III

2011-08-28T08:56:00.004-04:00

Yesterday, EPEC, my Rutland, VT autism support group had the good fortune of being able to set up a booth at a local community health fair. It was a really good time and we had a great turnout.

Well, it was a good time for most of us.

To read more, swing by the EPEC autism support group blog to read the article, or click here.

~Jon

One Down, Twelve to Go: Kindergarten Accomplished

2011-06-16T00:22:00.008-04:00

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

2011-06-02T23:55:00.011-04:00

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

2011-04-27T22:07:00.006-04:00

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

2011-04-10T10:17:00.004-04:00

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"

2011-03-08T23:25:00.008-05:00

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.

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

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

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

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?

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

2011-01-13T00:08:00.005-05:00

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

2010-03-24T22:22:00.006-04:00

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

2010-03-09T00:24:00.007-05:00

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

2010-01-28T00:14:00.005-05:00

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

2010-01-06T00:10:00.009-05:00

"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

2010-01-04T00:46:00.007-05:00

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

2009-12-27T23:17:00.005-05:00

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"

2009-12-26T08:19:00.006-05:00

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

2009-12-01T22:55:00.005-05:00

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

Now Monitoring Comments on Same Child, Different Day

2009-11-28T21:59:00.004-05:00

Good Evening, Loyal readers.

I want to apologize to all of you that I must now moderate the comments you post. I recently received a post from someone who was less than respectful to all of you. While I believe that thought provoking, challenging debates are healthy for our community, I do not have to tolderate abusive language or belittling comments. To those of you who share differing opinions in a respectful and fair manner, thanks for that and please continue to do so. You make us all the better for it.

That said, please click here to return to our current discussion, or here if you are new to Same Child, Different Day and want to start at the beginning.

Thanks and have a nice evening.

~Jon

Autism and Medical Marijuana

2009-11-27T10:44:00.005-05:00

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

Autism and Potty Training: Calling all suggestions

2009-11-15T21:44:00.006-05:00

I know that I'm the one usually giving support and advice, offering a suggestion or climbing a soapbox or two. But this time I come to you, my loyal friends, for your advice and suggestions.

Nolan is four-and-a-half and big for his age; he's also heading into the home stretch for Kindergarten. He's currently attending an early Early Essential Education (EEE, or Triple E) program here in Vermont, which is funded by Medicaid and is not quite considered "real" school. It is a half-day classroom full of students not all that dissimilar from Nolan, so the teachers are understanding where his "special needs" are concerned.

But next year is "real" school, a full day long with 'normal' kids and less understanding educators. The problem is, he is not yet potty trained. At four-and-a-half, he still wears disposable underpants which must be changed when he soils them. And oh how he can soil them! This big boy has many nicknames, of which one is 'Poop Machine'. No joke. Just playing on the computer will relax him enough to fill it to the brim.

We hate changing those ourselves, and dread having to leave that in the hands (so to speak) of someone less familiar with the Machine. During a half day, the teacher encounters a butt wash every once in a while. But for the full-day class, it's gonna happen.

Though I know he will learn what he can when he's ready, we feel almost compelled to make this one happen. But he doesn't even get the concept of pooping, when it's going to happen or why. We tried potty training last summer, with little result. He would go to the potty in the morning and sit there 'til he peed, but never got the essence of why he was there. And try as we would, we could never get him to go during the day in order to stave off a surprise.

We're going to try again during the Christmas break. And while there are great books out there with lots of suggestions and offerings, we thought we'd put it to our friends ---especially those with older kids who have experienced this stage in life.

Please, any and all recommendations will be heard, tried and welcomed. Nothing is too radical and there's no need for embarrassment. If you can think of it, we'll try it. Because, by Kindergarten, 2010, Nolan will be using the toilet. If not, it's your fault!

OK, not really. But we'd still like to hear from you.

~Jon

Thanks to a Loyal Reader for a Review of SCDD

2009-11-14T09:19:00.006-05:00

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

2009-11-11T07:53:00.007-05:00

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

Off Topic: Halloween

2009-11-01T21:20:00.005-05:00

Hi all. I'm still involved in a couple of outside projects, but wanted to post, since I haven't in a while. I know my posts are usually, strictly autism-related. But just this once, I wanted to share just a little.This was the first year we dared to take Nolan trick-or-treating and, aside from a little trouble getting him to adjust to the costume, it all went off without a hitch. There was a little rain --- not a hard rain, though. My wife called it "memory-making!"

Anyhow, he was adorable, and his sisters looked pretty good, too. Let me know what you think of everyone.

Autism: Discontinued State Insurance Coverage, continued

2009-10-20T22:28:00.002-04:00

I completed the article I mentioned here. It's been submitted to the newspaper serving our state capitol, and I'll let you know if/when they run it. While I manage the progress, I'll be vacant from this blog, but I will post a link to it on "Same Child, Different Day" in the end. If for some reason the deal falls through, I'll try again somewhere else and repeatedly; I will let you know the outcome. At the very least, I will post the article on the "Same Child, Different Day" blog, and my Old Stand-by, Associated Content.

I'll keep you posted.

~Jon

Autism: Discontinued State Insurance Coverage

2009-10-14T20:25:00.004-04:00

I had another post planned, but it will have to wait. I'll be taking a hiatus for a couple weeks as I'm currently working on another writing project.

It would seem that today our State medicaid office has decided that Nolan has received all the speech therapies he needs for 2009. Because we have private insurance through my work as well, they feel they have been providing him more services than he's entitled to.

In order to make things fair for him and all the rest of the recipients of speech services (regardless of need or cause), one Medicaid representative (I'll keep her name to myself for the time being) has made the unilateral decision to yank our son's services away from him. These are services he has been getting for two years now, and because the therapies have been "prolonged" in their words (and because we parents have been thoroughly trained in the therapy process), we can now stop being parents and take over as his therapists, utilizing the school-trained therapists (who get paid to do this) for guidance.

Some soulless, anonymous asshat in a, barren, similarly soulless office has decided that all children who receive therapy services need the same amount and quality of services, and once a limit has been reached, said services are withdrawn by the bureaucracy. I'm all about saving money. But just because my health insurer is providing a degree of coverage, should Medicaid stop covering the remainder because it's not fair to everyone else?

Apparently so.

Anyhow, I could go on here forever, but I have an article to write. It's one of the things I'm good at. Oh, I'll remain objective and fair, and I will keep much of my emotion in check (just to make it a balanced report). But I have to take a little time away from SCDD.

Just because I'm taking leave for a couple weeks or so, doesn't mean you should stop commenting. I need your feedback and input. Please. Keep commenting and I'll keep checking; I just won't be posting for a bit. So here I go, off to the paper-and-ink pages.

Ugh.

~Jon

Off Topic: My New Writing Blog

2009-10-11T00:05:00.005-04:00

This is a quick post and way WAY off topic --- As some of you may know and/or realize, I like to write. At the risk of sounding like I'm patting myself on the back, I think I do a pretty darn good job, too.

For a while now, I've been posting the odd article or two on Associated Content and that has been alright. But my first true love is the short story. For a couple of months now, a fellow blogger friend has been nagging (nee, encouraging) me to post some of my works.

Sure, it's dangerous putting your creations out there for free for the world to see, but for me, that's just the point. So I've created a blog dedicated solely to my writing. It may not be Harper's Weekly or New Yorker, but it is somewhere to be seen.

So if you are interested in that sort of thing, please stop by Read All You Want and, you know, read all you want. It doesn't matter, 'cause I'll make more! Click on that link above, or here: http://jonwrites.wordpress.com/

Hope to see you there.

~Jon

Autism: The things some people say, Part II

2009-09-29T14:47:00.014-04:00

I still want to keep the talk up about my previous post regarding autism and bullying. I’ll visit the topic again soon, as a matter of fact.

Today however, I was inspired to talk about something I know many of us have dealt with and others have written about as well --- that is the insensitive, uninformed (I was going to say “ignorant”, but I won’t say “ignorant”, because “ignorant” would be too harsh --- I mean, you can say “ignorant” if you choose, and that’s you --- fine by me, it is a fine word and all; I just choose not to use the word “ignorant” as a personal preference) things people say to us when it comes to our autistic kids.

A little while ago I touched on this issue and would like to go into it a little more. I’ve compiled a little list that I have either heard, vetted from the Internet or that we have had said directly to us. When I’ve seen/heard responses to many of these comments, the retorts from the affected families are sometimes snappy and often sarcastic. Usually the implication is “this is what I would have/wish I could have said.”

So I’m going to add another approach.

I’d first like to suggest some serious, non-biting responses, to insensitive (or even dumb), and sometimes just plain old “uninformed” things you may hear. Since it’s far more fun, however, to use those snippy-snappy replies, I’ve included somewhat more “creative” responses, too, just in case that’s how you roll:

The Comment: “Well, in today’s day and age, that’s the behavior you have to expect when you don’t spank your kids.”
Suggested Response: “We’ve actually tried nearly every form of discipline anyone has ever thought up to control his behaviors. We’ve learned through trial and error, and trying to figure out what’s causing the melt-downs, that these are not behaviors of a ‘kid being bad’. He’s hypersensitive.”
What I’d Like to Say: “Thanks for the advice, Professor. Why don’t I leave him with you for a week (or even a day) and we’ll see if you can knock the autism out of him.”

The Comment: “That’s the behavior of an abused child acting out.”
Suggested Response: “And to think, yesterday, some lady told me I don’t spank him enough. While abuse can happen in homes of special needs children (as it can in any home, I guess), I take him to so many therapies and doctor appointments, I assure you I would not want to add the need for another clinic visit.”
What I’d Like to Say: “And to think, yesterday, some lady told me I don’t spank him enough. Seriously, please call DCF, or the Police or any other agency --- and ask them if they could please bring a behaviorist or Personal Care Attendant with them. I’m having a hell of a time getting the State and my insurance to pay for them.”

The Comment: “Well then, why can’t you just control your child? Can’t you just make her stop?”
Suggested Response: “I wish!”
What I’d Like to Say: “I wish!”

The Comment: “If he’s talking, are you sure he has autism?”
Suggested Response: “Autism is a spectrum disorder. That means it comes in as many flavors as there are persons afflicted with it. Some kids talk, some do not.”
What I’d Like to Say: “Talking? Lady, all he’s doing is quoting every line from the new Blues Clues DVD we just bought. Incessantly. Loudly. And to answer your question: Yeah, I’m pretty sure he has autism.”

The Comment: “Well, remember that God never gives you more than you can handle.”
Suggested Response: No suggestion. I think walking away is your best answer to this one. However, if you must respond…
What I’d Like to Say: “Bi... --- I mean ma’am, at this point, unless you'd like me to show you what I really can handle, I’m going to have to ask you to please remove yourself to your automobile and leave the area quickly.”

The Comment: “Some kids are late bloomers. There are lots of cases where kids don’t talk at four years old.”
Suggested Response: “Ma’am, my child has been tested and re-tested. His hearing has been checked and he has a speech therapist. While I appreciate that you are trying to reassure me, we have been working on this for two years now.”
What I’d Like to Say: “Do those same kids continually hand-flap, chew their sleeves, babble uncontrollably, melt down in a kiddie playground, beat on the windows and purposely injure themselves on a daily basis, too?”

The Comment: “Autism, huh? So that means he’s a genius like Rainman.”
Suggested Response: “While savants do exist, they make up approximately 1% of all people diagnosed with autism. Nope, he’s just a regular little boy.”
What I’d Like to Say: “Potato Chips in your shopping cart, huh? Bet your cholesterol is through the freaking roof.”

The Comment: “He doesn’t look disabled.”
Suggested Response: “He is.”
What I’d Like to Say: “Would you like me to hang a ‘handicapped’ sign around his neck and push him in a wheelchair? Up until you opened your mouth, you didn’t look ignorant.”

The Comment: “If it helps any, I have a friend at work that has an autistic nephew. So I understand what you’re going through."
Suggested Response: “I sincerely appreciate that you are trying to relate to me. I don’t say this to be rude, but you honestly do not understand at all what my family is going through.”
What I’d Like to Say: “Great! Then that means you have experience. I’ll expect you at my house tonight at 8 to babysit.”

The Comment: “‘Famous Celebrity A’ says that you should try ‘XYZ’ diet/therapy.”
Suggested Response: “Thanks for the suggestion.”
What I’d Like to Say: “‘Famous Celebrity A’ has unlimited time, money and resources to try any and every snake oil diet/therapy that comes back in Google results. Unfortunately our insurance will only cover certain things, if anything at all. If you can give me some money, your time, and a team of nannies, I’ll try whatever you suggest.”

The Comment: “Gosh, I don’t know how you do it.”
Suggested Response: “It’s all we’ve ever known, so it’s typical for us.”
What I’d Like to Say: Nothing funny about this. The Suggested Response says it best.

The Comment: “Aren’t you just using his autism as an excuse for his behavior?”
Suggested Response: “Actually, his behavior is a symptom of his autism. He has not control over it.”
What I’d Like to Say: “If it will get this conversation over with sooner, then the answer is ‘Yes’.”

The Comment: “Honestly, how hard could raising him really be?”
What I’d Like to Say: “You can take him for the day, if you’d like to know.”
Suggested Response: “Not as hard as it is for him to have to live with it.”

~Jon

Autism and Bullying

2009-09-25T23:04:00.009-04:00

Being bullied as a kid is tough business. It happens too much, and goes equally unreported. Many times the bullying goes on until the victim sees no other choice than to --- well, on this blog, let's just say --- take extreme personal measures. Fortunately however, a significant number decide they don't have to go it alone and elect to talk to a trusted adult. How wonderful when that happens.

What do the victims do to get bullied? They're smaller. Or fatter. Or have red hair. Or wear glasses. They are simply different. {I have to pause here for a moment while I ponder the significance of that word: "different" --- because something about everyone, every single person on this whirling sphere, including that bully, is different --- I've always found that to be curious} What then, when that difference is hand flapping or kooky behavior? Holding your ears and rocking back and forth during the middle of the teacher's lecture: that'll get you taunted on the playground, sure as I'm typing this.

What then, if the same condition that causes you to incessantly gnaw on your shirt sleeve also makes it difficult for you to communicate even your most basic emotion or concern? How as a child with a diminished ability to express your feelings are you supposed to explain to anyone just what's going on every weekday during that twenty minutes outside after lunch?

A friend who writes a family blog encountered just such a moment with her own son (read about it here). So far, their situation has been improving. But I have to sadly imagine that this is not always the case.

When you can barely speak, if at all, and can not communicate in abstract terms, and the ones who make you feel warm and secure live at the end of your six hours away from them, how do you cope with such a situation? Are the surrogates who are supposed to be looking out for you --- when your family can not be there --- looking out for you? Do you feel dread, or do you even comprehend the awful things being said to and/or about you? Maybe that's a benefit of autism for some: the teasing can't get to you, because it means nothing to you.

But just as with the neuro-typical kids playing around those of ours who are autistic, bullies can be cruel. I'm hard to convince that autism is an emotional armor suit against such a barrage. Kids are kids, no matter the shape, color or neurological challenge. And though our son who lives with autism is a year or two away from the potential bullying, this will be our issue tomorrow.

So I'm addressing it today: Do you have an autistic (or any special needs, for that matter) kid? Have you encountered bullying yet? How have you handled it? How has your little loved one handled it?

Please share your comments with us; they are very important. Give us some advice. Let us know what worked for you. We'll visit this subject again very soon.

~Jon

Dealing with Autism in Public: An Open Letter to "That Mom"

2009-09-20T01:21:00.009-04:00

A reprint of an article I published on the user-produced site Associated Content

"The other day that mom with the little boy who was making so much commotion in the fast food restaurant noticed you staring at her. He was a handful, wasn't he? His screaming was incessant and the way he was challenging his mother: unacceptable. It's understandable that you would never allow your own child to holler at you like that, or bounce between the booths. You found yourself wondering what would possess her to bring an unruly child like that out into public in the first place.

As your respectful children stood beside you in silence, you wondered when he would just be quiet. And you wondered what kind of mother she must be. If you only knew what that mom wonders.

She wonders what she can do to get him to stop screaming. Sometimes it lasts all day, and lately, it's been almost every day. Then, while you put your kids back in the car, she wonders if he'll keep his seat belt on for the entire ride. You will get them home and they'll head right upstairs to play together nicely. She wonders if he'll decide it's time to begin switching the lights on and off repeatedly, or throw to everything that's on the desk onto the floor.

When your kids fall down, you can ask them where it hurts and they can tell you. It hurts the other mom that all she can do is hold her little boy and wonder when he'll stop crying. Later, while you wonder what story you will read to your child tonight, the mom you know nothing about will once again cry herself to sleep in her husband's arms.

You wonder later why God would give any child to "that kind" of parent, yet she's thankful that God chose her. You judge the stranger based on that one incident, while she wonders why you didn't just ask if you could help. She probably wouldn't have taken it, but she would have appreciated the gesture.

Your four-year-old has mastered the art of conversation. She finds it triumphant that her son mumbles, "go school" and "want eat." You already wonder what your child's high school prom will be like. Meanwhile the other mom wonders when her four-year-old will potty train. You wonder who your little one will marry some day, while the mom with the rambunctious son worries that he may not graduate from high school. You plan to send your child to the best university, and the lady that you never met wonders if she'll have to care for hers as an adult.

While she's not jealous that your kids obey, talk and dream, she does wonder what it would be like to be able to call her son "normal." He is who he is. There's no altering that, and his mother wouldn't change him for the world. But feeling your eyes burn through her melts her soul. She does the best he can, and wonders why you judge them both. She doesn't ask for your sympathy, just your understanding.

Her family puts a lot of time and effort into helping him become the best somebody he can be. You don't see it, but that's all right, because his mom sees it every day. She sees the victories as well as the defeats. You cast your judgment based on the one day you saw the unruly child in public. No one faults you for that, because the other mom used to do the same thing, back before her son's diagnosis. All the mom asks of you today is compassion and consideration.

Tonight, when you tuck your kids into bed, be thankful for the children you have and for who they are. Understand that, while you are getting butterfly kisses from your little angel, there are parents wondering when theirs will be able to say the words, 'I love you.'"

~Jon

Same Child, Different Day: So much more than words

2009-09-04T23:16:00.007-04:00

I've changed up the sub-title of this blog a little bit. Initially, this blog was only going to be about the booklet: maybe I could give some good, helpful info, and possibly earn a little gas money along the way. But so much has been happening with this online forum, that I have to change at least a portion of the title so it better reflects the mission and purpose of the posts.

The main title however will never change, if for no other reason than --- frankly --- it's too darn clever to mess with. After all, doesn't the title reflect what we go through on a daily basis? Each and every day, Jimmy, Nolan, Chris, Max, Tony, Alex, Raymond, Hunter, Keera and all the others too numerous to mention are exactly the same child they have ever been; that they will ever be.

But one day --- whether it was bright and sunny, there was the prediction of a flood, it was a Tuesday, you had just come from a birthday party or had just gotten out of bed --- somehow you happened into the clinic that diagnosed yours. The doctor(s) may have been old, adorable, a friendly short lady, a doc on his way to retirement or a team of over-priced professionals. No matter --- whether you were shocked or prepared, whomever they were slapped you square on the cheek with a palm-full of gut-wrenching news, and left you with a "what are you gonna do about it" welt on your face.

All of a sudden everything was different. The sun wasn't as bright as before, the tears fell like rain, you couldn't recall what day of the week it was, the happy memories of the party had all but vanished and you just wanted to climb back into bed. The day was different.

Though it may have been happening gradually for a few months, the days now began to show signs of change more quickly. There was no more predictability; something had happened and now you couldn't use the same toys to stop the heart-squeezing cries. As different as each day became, so it too became ritual: you now had to take the same route to daycare every day or put every piece of clothing on your child in the same, mind-numbing order time and again. This, too, was different.

But there was something that hadn't changed; hasn't changed. That kid was still the same one whose temperature you took when they were sick, the same one who you couldn't wait to smell after a bath, the exact same one who captured your heart as the nurse laid their swaddled body across your chest. This is the exact same child that they ever were, and that they are ever destined to be.

That last statement is not said in the vein of desperation. On the contrary; may it ease your frustration. While we should never give up on pushing our children's potential, at the same time, we should not expect overnight miracles. What we should expect are frequent regressions, a slow pace and insane, overly-emphatic reactions to the smallest leaps and tiniest bounds.

One day 4-year-old Nolan will wow us with his computer finesse or deliberate acts of affection. Then two days later at an outdoor party, we won't be able to socialize with friends because we have to guard against his constant ricocheting toward the street.

Who understands what I mean? Come on, show of hands? See, that's what I thought --- those with your hands up, live it; which is the only way to appreciate it.

So anyhow, that's why I can't change the main title of the blog.

~Jon

Some Tidbits from "Same Child, Different Day"

2009-09-01T22:58:00.005-04:00

A couple of tidbits for this post:

I saw this great article in our local news today, and I'm glad the outcome was positive. If anyone finds out who these parents are, I would love to talk with them respectfully about the experience.
Our monthly meet-ups for Exceptional Parents of Exceptional Children --- the support group I co-chair --- are back from their summer hiatus. You can read about our group here and about or visit our blog site here.
Nolan and I had a wonderful connection recently. As you know, many autistics are not good at communicating affection. Well, the other day as The Boy climbed the steps of the mini-bus, he shrugged off his backpack and headed down the aisle. Then, in an unsolicited, unexpected moment, he turned back up the walkway, murmured "head butt" to me (our 'little thing'), and then put his head on my cheek, grabbed my neck and squeezed. Then just as quickly, he let go and without looking back, sat in his seat for the ride to school. I was speechless and it was awesome!

Just thought I'd share these little bits with you.

Have a great day,

~Jon

Autism Behavior: The Best of Luck

2009-08-20T22:55:00.008-04:00

It's nice to see that our autism family support blog has some loyal followers! Same Child, Different Day wouldn't be such a success without all of you, as well as the shy readers who choose to stop by casually, but aren't official followers. I'm happy to have any and all of you stop by, and most of all to provide your wonderful comments.

There are some people however who choose to make comments and ask questions outside of the Same Child, Different Day blog. For instance, a friend saw us in a restaurant the other day and asked how it was that our autistic son was behaving so well.

Before I get to how we answered the question, let me first tell you that Nolan was really behaving well. Our restaurant moments are catch-as-catch-can; many times he can be overwhelmingly impatient for his food to arrive; a typical reaction of those with autism. The chant's of "no, no, no" to every attempt at preoccupation and the drumming of all the flatware simultaneously can be stressing to the most stony nerve.

So the fact that Nolan was giggling softly and drumming only his fork was for us a wonderful time. Couple this with the mom across from us who was having a heck of a time with her two presumably neuro-typical youngsters, and we were practically in Restaurant Heaven.

I think what helped us with Nolan may simply have been that we hadn't waited until the last minute, until he was truly melt-down hungry, to set out to eat. Another thing that has worked immensely for us is a portable DVD player. Now, I'm not a big proponent of TV-babysitting, but in the world of special needs parenting, we don't always want what's right, we sometimes want what's quiet! And when the numbers, letters, shapes and puzzle pieces fail to hold their attention, there are times when an electronic device is just the ticket.

With an autistic child, being prepared before you strike out is your best weapon. And only trial and error (and time) will tell you just what you need for your own preparedness. Sometimes a special blanket will be all you'll need. Other days, a DVD player, coins, a bag of blocks, three puzzles, an old sock, two packages of crackers, a handful of Gummi Bears and Horton hatching an egg won't be enough to ward off the ruckus.

So in a nutshell, luck was the big player in Nolan's well-mannered behavior. And as they say, luck favors those who are best prepared. Now, I know that isn't the flashy, deep, awe-inspiring solution you may have been thinking I would have come up with. It isn't a Dear Abby-esqe answer, even. Maybe I just wasn't prepared for the question.

If you have a comment or suggestion related to your own preparedness with your kiddos, please share with the rest of us. And feel free to offer any sage words of wisdom. I won't mind. And if you'd like to pose a question --- if there's something on your mind related to your kiddo and you'd like an outsider's uneducated opinion --- I'd be glad to take a stab at it.

Just jot me an email, and I'll do my best to post a thought-provoking (or even sarcastically mocking --- I have those, too) answer.

~Jon

Same Child, Different day celebrates ONE YEAR!

2009-08-02T23:18:00.005-04:00

Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis has been published and distributed for one year this month! What a great thing to be able to say. So much has happened and so many people have been touched by this family autism resource. It has travelled across the USA, from Massachusetts to Washington state. It has reached the souls of folks from Alberta, Canada to Durban, South Africa. You are the ones who have made it all possible.

For those not yet familiar with this autism booklet and some of the results from it, let me share with you a few of the highlights that may be of interest.

The booklet is a nice, compact manual that shares some of my family's anecdotes of what has happened during our son's first year after he was diagnosed with autism. So much more has happened since that first year, but our initial experiences are the focus of this booklet
The chapters deal with everything from bed time to taking time for yourself. It also includes a section with concepts and terms as well as a short but handy reference section
This autism reference booklet lead to the start of Rutland, Vermont's now-annual "Celebrate the Spectrum", a month-long series of events throughout April, which you may know is National Autism Awareness Month --- which in turn lead to the enhancement of Rutland's Exceptional Parents of Exceptional Children (EPEC), our own local autism support and awareness organization
The manual is included in Autism Speaks' resource listings (Manuals & Toolkits) which brought the booklet into the hands of friends in Canada and South Africa
Jon Gilbert, the author of the booklet, is available to speak to your autism awareness group, ASD class or any facilitated gathering. He can speak for an hour or a day; in his local New England area or with your group on the west coast --- just send an email by clicking here
And there is so much more!

Please, pick up your copy today by clicking on the PayPal button in the sidebar. Please tell anyone you know who could use a copy (or a group that hasn't purchased booklets yet) so we can let them in on everything, too.

Let me know if I left anything out, if you'd like me to include you site's web link on our pages.

All the best and thanks for the great year!

~ Jon

Autism: The things some people say

2009-08-02T00:55:00.005-04:00

There's no end to the idiotic things people not living with autism say to those of us dealing with the condition every day. From the lunch counter girl ensuring "how hard could it be" to the medical professional saying she'll take the day off during my son's next appointment, one thing's for sure: if I don't need an outsider's unsolicited advice, commentary or opinion, I'll get it. Only those living the autism maze can truly understand the world we share with our loved ones.

For that reason I have said in the past that we can forgive ourselves if, every once in a while, we say we wish our kids were "normal" (labeled "nero-typical" for political correctness). We can forgive ourselves for the thought slipping through every so often that we wish things were different. I'm not saying that we want our kids to be anyone other than who they are today; instead that it's okay if we think about what might have been, if just every once in a while.

Today Nolan was having an especially hard day. He had been whining for much of the morning and afternoon. Later, when he woke from a nap, he was crying incessantly and without reason --- that is, without a reason we could conjure up. No amount of DVD or computer time seemed to help.

I hope its just because I was frustrated for him not at him, but I actually uttered a phrase I have yet even so much as thought up to this point. Without mulling it over for the briefest of seconds, I said aloud to my son, "Can't you just NOT have autism?"

The sound froze in my ears. I mean, I wasn't making a true wish, no rubbing of lamps or upon falling stars. I didn't even expect a magical, glittery transformation or the crescendo of a chorus. But I honestly doubt at that moment that I had spoken the words as a prayer for my son's relief. Instead, I'm positive that at that specific juncture in the space-time continuum, right then and there, I was honestly speaking for my own selfish desire. I meant the utterance for my own satisfaction, a request bourne solely for my own need and want.

I don't know that it was okay for me to say it, to say that sequence of words strung together that ended up forming an impossible plea. I will have to be the one to battle with the appriopriateness of that sentence.

In retrospect, I am not the one battling with the unwanted sentence in the first place.

~ Jon

Autism: Fighting the battles you can win

2009-07-29T23:19:00.009-04:00

I started today's post as a rant, which I said in April I wouldn't do again. A couple of people had said some idiotic things that tripped my trigger, and I was going to go off on how insensitive and unthinking people can be. But then I realized that these people don't have a clue about autism, so I decided, what's the point?

Instead, I thought I'd share with you another autism anecdote, something that happened to us just this morning and that typifies what we go through every day.

When getting the kids together in the morning, I admit that either a SpongeBob Squarepants, Dora the Explorer or Blues Clues DVD will be playing in the background. It's a battle we've decided is better "lost" than challenged while trying to give meds, brush teeth and everything else involved in trying to get a couple of high maintenance kids together for school. Anything we can to to make the process as emotionless as possible --- for us --- is a good thing.

This morning we were on an episode of the square sponge of which Nolan is not especially fond. He knows about "skipping" the episodes and ran to grab the remote. Practiced as we are at this game, it was a no-brainer what he was asking, and we attempted to move the episode along. Several presses of the remote met with no results, and Nolan became visibly upset.

He began to whine and repeated "skip, skip" in his own pronunciation. We thought to change the batteries, hoping that would do the trick.

We've just moved and our house is still yet to be fully unpacked. So, finding a set of small triple-A batteries hidden amongst the boxes labeled "Kitchen", "Kids Stuff" and "Your Guess is as Good as Mine" was a near impossibility. We were fortunate however and snuck some out of a small, light-up fan we had just bought him.

By now he was melting down, giving a crying fit that no parent wants a child to suffer before school. But he's yet to learn patience or the limitations of something that's broken. It has worked every other time without incident, so why not today, People?

We opened the remote and realized right away that no amount of changed batteries would do anything to help the situation. Tipping the remote upside-down, a small amount of moisture/water/some unknown liquid trickled from the hand held and onto the entertainment center. Oh happy day! We tried, but the batteries just ended up getting wet.

Nolan's meltdown now in high gear, we realized the only remedy would be another DVD, and fast. We popped out SpongeBob and slipped in a Looney Toons collection. It worked, and fortunately the bus was less than two episodes away. Nolan calmed down and all was quiet on the homefront.

It would be better if we could get the mornings going without movies altogether. But we're willing to accept that there are other places we can put our collective foot down. Morning just isn't that place.

~ Jon

Autism Spectrum Disorders: Calling all storytellers!

2009-07-23T15:53:00.007-04:00

Phase two of the marketing test for Same Child, Different Day elicits your help once again. As many of you are aware, this family autism support resource is full of our own anecdotes and stories of how Nolan's autism has affected our family directly. But I've realized with the latest promotion that our experiences are only one small part of the story that is autism. Time and again people commented, "When I read your booklet, it was refreshing to see we aren't alone," or "I'm guilty of feeling justified that you experience the same meltdowns we do," and "Thank you for making me realize it's OK to laugh about this condition every once in a while."

You, too have experienced so much in dealing with ASD's, that I would love to hear from you, as well. And I'd love for you to share your thoughts and experiences with all of us, with the ultimate goal of telling the world what we have to say.

If you are comfortable with it, and in your "spare" time, please feel free to comment below or email me with your own "Spectrum" stories. Not as an invasion of privacy or morbid voyeurism; rather this is a chance to celebrate your loved ones and show them off in front of the world! Parents love to brag about their kids and now's your chance.

Share something funny, something frustrating, something prideful or something quirky. Did you have an awkward but amusing run-in in public? Maybe we did, too! Does your loved one living with autism have a funny trait? No need to be embarrassed or devastated by it; brag about it now! Here's your chance to tell everyone how frustrating that stim is, while at the same time admitting that you have laughed about it behind closed doors. I am not asking any of us to make fun of our loved ones --- oh goodness, no! Instead this is an opportunity to include them in mainstream life --- a chance to show off the fact that, just as they are as different as chocolate and vanilla, they are equally just like everyone else.

And if sharing your name is an awkward proposition, no worries! If you ask me to, I'll honor your request for confidentiality and anonymity. Just keep in mind that the final intent is to present your snippets in print.

I have a saying: "Doctors keep people alive, but storytellers keep CIVILIZATIONS alive." I think there's a message there somewhere. Anyhow...

...thanks a lot and Happy Storytelling.

~Jon

Autism Support Booklet: Thanks for the critiques

2009-07-13T23:23:00.008-04:00

The requests for Same Child, Different Day over the last month were exciting. Granted, I gave the autism family support resources away, but that was the point for this 'promotion'. Now I'd really like to hear from those of you who got a free copy of the booklet; time to keep your end of the bargain.

I look forward to your honest critiques and comments. You can email me privately at jongilbert@rocketmail.com, or you can post a comment below. Either way --- and as long as you let us --- your opinions will be shared with the other readers.

But I have a deeper purpose than just comments on a blog: this is one leg of a multi-faceted marketing survey. I have bigger intentions for the booklet, and you my friends (and of course, your helpful words) are one piece to that plan.

So, if you've gotten the free autism support guide Same Child, Different Day, then I'm calling in your chips, as it were. Please email me or comment below when you can. I'm looking for honest opinions, suggestions, things you were satisfied with, something there should be more of, whatever there may have been too much of, or things that made you laugh or cry. I'll read all your comments and emails, then decide next which direction to take the resource.

If you haven't received a copy of Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis, you can still get one by ordering from the sidebar to the right. As before, first select from the drop-down the pricing based on the quantity you desire. You'll be able to select an exact amount when you get to the order page --- the price is $4.95 per copy or less, depending on the number you request.

Of course, if you order at the right, please email me explaining that you've placed an order with PayPal. Oh yeah, and don't forget to let me know how you stumbled across this little world.

Please let me know if I missed anything else.

~Jon

Free Autism Family Support Services Booklet

2009-06-14T18:54:00.008-04:00

Hello all: I'd like to elicit some help from my wonderful friends, families and readers. I'm calling out especially to those families who are beyond the first year after the autism diagnosis.

From Monday June 15 through Sunday, July 12 I'm offering free copies of Same Child, Different Day: One Family's experiences during the first year after a child's autism diagnosis. In return, I'd like your sincere evaluation of this autism booklet and your suggestions as to where it can be changed or improved. I'd like your supportive comments on how I can improve or grow the booklet. Over the past 10 months I've gotten some great feedback from families seeking autism support services, and I could use more.

I'm a glutton for constructive criticism, and would appreciate your honest, thoughtful, supportive input. In the end, I'll be able to decide what direction to take the third printing of the manual.

So for the next month, if you'd like to order single copies of Same Child, Different Day, please send an email to: jongilbert@rocketmail.com, and be sure to include all your contact information. Again, this is one copy of this autism booklet per household, and understand that I'll be nagging you for your feedback. Please keep in mind that if you are looking for more than one copy per mailing address, you'll still need to order from the sidebar to the right.

Also, so that I can keep this post at the top, I won't be adding another until after the 12th of July. Until then, send me an email for more information.

~Jon

Same Child, Different Day: A Little Something for You

2009-06-10T23:26:00.006-04:00

The last official chapter in this autism support booklet is "A Little Something For You". The entire point of this final labeled section is: 'Never loose contact with yourself.'

Your time as the parent of a child with special needs --- in this case, autism --- will mostly be devoid of "me time". So when you get free moments, take full advantage of them. It sounds so simple, yet it gets forgotten so easily. You can not take care of your child if you can't take care of you first.

You will feel guilty about it too; that's inevitable. But this chapter briefly lets you know that forgiveness of yourself above all others is paramount.

It's also useless to blame yourself for this sudden life-altering circumstance as well. Instead, celebrate the successes as they come. And remember, we're all here for you --- you are not alone and always have someone you can turn to. Always.

~ Jon

When Ordering Same Child, Different Day

2009-05-20T11:20:00.006-04:00

I'd like to thank all who have ordered Same Child, Different Day and hope that you're finding it helpful, informative and enlightening. When you order the booklet, if you could leave me a comment here somewhere, it would be truly appreciated.

Let me know how you came upon the blog site for Same Child, Different Day; it's always fun to find out.

Also, I'm interested to know where you're from. It's interesting finding out what corners of the world our words are filling.

Finally, come back later and let me know what you think of the booklet; let others know as well. I'll take your words of encouragement and your critiques. Since Same Child, Different Day is for you, I can only make it better by hearing from you. And you'll be sharing your honest opinions with other readers. Besides, your opinions are less biased than mine.

Keep in mind that when you order, there is a drop-down for the price break-outs; select from the correct price group and you'll be given the opportunity to enter an exact quantity later. All the prices are in $US at this point - I don't have any way right now to accept foreign payments or convert foreign exchange. At this time I prefer and exclusively use PayPal. If you aren't comfortable ordering directly online (which is actually the most secure way you can go), PayPal provides a mountain of purchase options.

Anyhow, please keep reading and commenting and I'll keep trying to support you and make a difference in the lives of our special kids.

~ Jon

Celebrate the Spectrum Finale

2009-05-10T22:46:00.005-04:00

Autism Awareness Month is behind us now; the conference speakers have packed up their projectors, the empty bottles have all been counted, volunteers have all gone home and we get to take a little break for a couple months. But all in all our Celebrate the Spectrum was a wonderful success; we look so forward to next year.

And Same Child, Different Day took the spotlight the final evening. But what was to mostly be a night of me reading from the booklet turned into a wonderful sharing session. Heidi spoke at length about her son Eli, and the pictures she provided were a wondeful touch. Jen shared a poem she wrote which made everyone cry. My Mom shared a newspaper article with a very positive outlook. Mike gave an anecdote that was also quite inspiring. And several others joined in the converation as well.

That's what it's about, after all: the sharing and support we all give each other as loved ones experiencing the same "different" days. Sure, all our kids are at different places on the spectrum. Some of us embrace the public and can't wait to enlighten others. Then there are those families however, who have decided that home is the best place to stay; and maybe these events didn't change that way of thinking at all. We're hopeful that they did, but if not, our number one goal was to show you that we're in this together.

No two ASD kids are alike, and it's those differences that bring us together. If all we showed our new friends is that they have someone to turn to, then the entire month was worth it.

Either way, see you next April!

~ Jon

Same Child, Different Day: The Unknown

2009-04-16T23:39:00.007-04:00

Autism is an unknown. My good friend Heidi, whom I've mentioned before, has a great saying: "If you've seen one child with autism...you've seen --- one child with autism". No two are alike, yet its the differences that join them.

The chapter of Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis entitled "The Unknown" is similar to "Bedtime" in that it's a short by informative chapter. It talks about those differences and many more: like what causes our son's meltdowns, won't be what causes your child's. Yet, it's those meltdowns that make them so similar.

And the cause of autism is yet to be proven; which makes it difficult to find the right mix of therapies that will work for you and yours. But what works for you, though it will differ from us and the rest of the world, will be what works for you. It's as simple as that.

There's the connection: It's all these differences that bind us. And that's what this chapter tries to share.

If you'd like to read more of Same Child, Different Day, you can buy a copy (or several for your organization). Just click the PayPal link in the sidebar.

~ Jon

"Same Child, Different Day" Goes Global

2009-04-07T06:36:00.005-04:00

I'm very excited that Same Child, Different Day has reached around to the other side of the world. I was contacted recently by a group in South Africa asking about our little booklet. To our new-found friends, thanks for your support and welcome to Same Child, Different Day; if it helps even one family, then "Misson Accomplished". To all the rest who have supported us so far, I have to tell you that none of this would be possible without you!

Our New Web Page

2009-04-06T00:08:00.003-04:00

Here's just a short note to ask you to please check out the new web page for Exceptional Parents of Exceptional Children (EPEC), www.geocities.com/rutlandepec or you can click here!

Jenny McCarthy...again!

2009-04-02T12:27:00.011-04:00

Jenny McCarthy. Jenny McCarthy. Jenny McCarthy. I'm guilty to admit that if I keep hearing the name Jenny McCarthy every time a news or Hollywood outlet mentions autism, I'm going to have a melt-down of my own.

I promised when I started this blog, that it would only be about Same Child, Different Day and anything that promotes, supports or supplements it. And I swore to myself I this wouldn't be a rant blog. I've had bad luck with that in the past so let's just say, I'll try to make this the only one of it's kind.

Jenny McCarthy has a son with autism; granted and my prayers to her. And she's found what she believes is a treatment that seems to have cured him, in her eyes; hallelujah and praise God. If it's true, nothing aside from the same happening to my own child would make me happier. But, for all the reporting outlets to have dubbed her the end-all and know-all when it comes to autism is finally getting to me. She purports herself to be a self-appointed autism advocate for parents, but I don't recall asking her to be my self-righteous martyr.

First and foremost, there are countless fantastic families and individuals who have done as much if not more where the diagnosis has touched them. But you don't hear about them because, unlike Ms. McCarty, they don't have piles of cash, unlimited free time or the benefit of celebrity to thrust them into the limelight. On the contrary: many have given up jobs and homes, to move in with family and devote all their time and money into caring for their child, because their state, insurance company or community won't or simply can't help them otherwise.

Also, Ms. McCarty has found apparent success with her son's particular issues. However, as my good friend Heidi is fond of saying: if you've seen one kid with autism, you've seen one kid with autism. What works for Jenny McCarty didn't work in our specific situation, and it may or may not work for you. But the celebrity community-at-large has embraced Jenny, and have chosen to utilize her as a resource for all things autism. That's an unhealthy route to take, when you consider she does have a specific agenda she's pushing, and knowing that not all of those affected by autism share the same beliefs.

Yet, Jenny McCarthy is called upon time and time again to answer every question that could be asked regarding autism. I'm not claiming that any other person would be better versed on the subject, especially not a school-trained stranger not living the autism maze. But there are other families experiencing this condition, parents who don't hold a narrow-minded focus or agenda. It's the way of our society: popularity is the biggest factor we use in determining the most qualified authority. Just once I'd like to see the news media call on a regular family with a typical laundry list of daily tasks, a reasonable income and no axe to grind.

Anyhow, I said I wouldn't rant, and I don't want to get all irrational and thoughtless. And I surely don't want to invalidate the struggle I'm sure Jenny goes through on a daily basis. No matter the degree, autism is a challenging, life-changing diagnosis. I just wish society had chosen a more appropriate representative.

~ Jon

'Celebrate the Spectrum' Radio Interviews

2009-04-02T01:03:00.005-04:00

April 1st marks the beginning of National Autism Awareness Month. Begun in the early 1970's by the Autism Society of America, the nation now recognizes April as a special opportunity for everyone to educate the public about autism and issues within the autism community. Along with that, my own local support organization, Exceptional Parents of Exceptional Children (EPEC) is pleased to roll out 'Celebrate the Spectrum': a month-long series of events, activities and talks aimed at sharing our lives with our community.

To make folks aware of this month's activities, my EPEC co-chair (Heidi) and I set out on two radio interviews: one locally with our most popular radio station (Mix 98.1/WJJR) and a smaller, independent station in our queen city of Burlington (105.9/The Radiator). On separate occasions Heidi and I have both been on the program (The Next Frontier) with the host Anne Barbano, who also produced a wonderful video called "Living the Autism Maze" (check it out here).

To listen to our talk about 'Celebrate the Spectrum' and also how Heidi's National Guard duty affects her relationship with her son, please click on this link (interview). The page takes about a minute or so to load, so please be patient. Of course, I talk about Same Child, Different Day, too!

~ Jon

Same Child, Different Day and 'Celebrate the Spectrum'

2009-03-31T23:24:00.009-04:00

This booklet has proven to be a worthy resource in more than one way. For example, I was given the offer to speak in front of an autism support group because of the info I present in Same Child, Different Day. However, that turned into co-chairing that same group; Rutland, Vermont's 'Exceptional Parents of Exceptional Children' (EPEC).

And EPEC was once a small, little-known group until I had the good fortune to meet Heidi Corcoran Wener. Once we put our heads together, we were able to quickly turn what was formerly a monthly support group into the area's leading source for autism information and personal knowledge. And April will kick off "Celebrate the Spectrum", a month-long series of activities and events for folks living with autism, their families and the community-at-large.

"Celebrate the Spectrum" itself began life as merely a book reading, and has now turned into almost two dozen activities, presentations, events and celebrations of everything autism. If we could make Rutland, VT the premier go-to location for autism events (I say I'd like to make Rutland the Sturgis of Autism), then what a response from a little 50-page booklet.

The reading of Same Child, Different Day will still be the signature event of "Celebrate the Spectrum", but how exciting that it has grown to be so much larger than itself! And all in a few short months.

~Jon

Bed Time (Dread Time)

2009-03-24T12:32:00.004-04:00

The shortest chapter in the booklet Same Child, Different Day deals with bedtime; a time of the day we have affectionately referred to as dread-time. Though it's the shortest chapter, it deals with what for us has become the most frustrating part of the day.

The chapter offers some suggestions and insight, and shares an anecdote aptly titled Dread Time. I even talk about melatonin, a product that we have had success with in getting Nolan to sleep, though your results will most likely be different. We always recommend you speak with your medical professionals before undertaking any medicine or supplement. And just a note: the melatonin helps him get to sleep, but does not necessarily keep him that way!

~ Jon

Now, About Those Lifestyle Changes

2009-03-15T00:23:00.011-04:00

It's been some time since I've posted; I have been working on a few projects to promote Same Child, Different Day, and the Blog got overlooked. Back to it for you...

And for you, the next chapter in the booklet is titled "Now, About Those Lifestyle Changes"; it's no coincidence that this is the longest chapter in the guide. In this section I try to describe to you the scope of what we mean when we say "same child, different day". But I could only begin to give you a feeing for what you can come to expect. Your 'different days' will not mirror ours and to bequite honest, they won't mimic each other from one to the next.

As a matter of fact, the days of certainty and predictability will be replaced by unexpected adventure and learning. I feel confident when I say that I can think of no neuro-typical family who experiences or learns from their days quite as much as that of an autistic child. Just try to keep in mind that anything you are experiencing barely scratches the skin of what your youngster is going through.

In this chapter I also introduce the signature anecdote, simply titled "The Mall Incident". It vividly shares the often times embarrassing public meltdown, and provides a snapshot of what it's like to be on display for the world.

That's not to say you should shutter out the world, nor willingly hide behind walls. The stares and comments are aggravating, but you and your youngster with autism have the same restaurant, mall and hotel privilages as anyone not on the spectrum. Though convincing yourself of that will be harder that trying to enlighten strangers; even when their ignorance about autism may seem unbelievable.

Most frustrating and surprising though, can be the reaction toward your child from the very people who should be helping him. Even trained health professionals can be callous and insensitive. I share a story of one such encounter when we visited the office of Nolan's eye doctor. One staff member made us rethink a follow-up visit to that particular clinic.

To lessen the daily burden however, a short list of helpful tips is included in this section. Most of them are common sense and you may do many of them anyhow. But if not, (or even if you look at this list as a tiny reminder), we hope they'll prepare you a little better and make each day a little less different.

~Jon

Autism Radio Interview

2009-02-11T22:07:00.007-05:00

I mentioned a while ago that we were supposed to present Same Child, Different Day during a radio show last month. Anne Barbano is a director, writer and producer of a presentation called Living the Autism Maze, and is the host of a local radio talk show. She headlines 105.9 - The Radiator's "The Next Frontier", an autism-focused program that "strive[s] to educate, inform and create opportunity for a community that may not always have access to inclusionary experiences."

However, our January 14, 2009 show to talk about the booklet did not record; can you believe it? Anne was nice enough to put a little blurb about it, with a link to this site, but it would have been wonderful to be able to provide you with the listening link here.

No matter, if you'd like to talk about the show, writing booklets, or anything autism-related, please drop me a line.

~ Jon

We're Now Using GoodSearch as Our Personal Search Engine

2009-01-23T22:42:00.003-05:00

Here's a new easy way to raise money for your favorite cause. Just start using Yahoo! powered GoodSearch.com as your search engine and they'll donate a penny to your favorite cause every time you do a search!

In addition, do all of your shopping through their online shopping mall, GoodShop.com, where you can shop at more than 900 top online retailers and a percentage of your purchases will go to the charity or school of your choice. You pay the same price as you normally would, but a donation goes to your cause!

Here's the web site — http://www.goodsearch.com/. You can also read about GoodSearch in the NY Times, Oprah Magazine, CNN, ABC News and the Wall Street Journal.

Autism Radio Interview and Buying Copies of "Same Child, Different Day"

2009-01-14T21:42:00.010-05:00

Just two short notes for now:

~ 1) I had a radio interview today to talk about Same Child, Different Day. When the stream is up on the host's website, I'll post the link and details from the show. But for now, you can click here to get more info about the host Anne Barbano and "Living the Autism Maze", and check out the eclectic little commercial-free Vermont community radio station here: 105.9 = The Radiator.

~ 2) I've posted a place in the sidebar where you can buy copies of Same Child, Different Day through PayPal.

~ Jon

Now That You Have an Autism Diagnosis

2009-01-12T13:50:00.003-05:00

At the point you're told your loved one is autistic, your first reaction is likely extreme fear, absolute confusion, uncontrollable anger or overwhelming guilt. More likely, you're feeling each of these simultaneously, along with emotions I have yet to, can't or prefer not to mention. Once you're able to get a handle on what you are feeling (we'll talk about that in an upcoming chapter), it will be important to think about your (and more specifically your child's) needs.

The Same Child, Different Day chapter entitled "Now That You Have a Diagnosis" shares a brief but practical road map of sorts, a kind of information booth with suggestions about where to start looking for services. I didn't go into great detail about any of the services available, as you'll likely want to start looking for assistance at your state level. But you are provided with key phrases to use in your search, information about local (voluntary) autism databases and a story about a single-mother friend who took the time to make sure her son is protected when she can't be available.

As always, if you want someone to talk to who's on the front lines, (we aren't doctors or professionals; just loving parents) please contact me. You can also email jongilbert@rocketmail.com if you'd like to order booklets for your group or organization.

We wish you all the best.

~Jon

(Next chapter: "Now, About Those Lifestyle Changes")

Denis Leary's Autism Comments

2009-01-11T08:28:00.004-05:00

I'm taking a little diversion from talking about the booklet so I can share with you a concern. There's been a little gap since my last post because I've been working on an article for Associated Content, and the subject matter may interest you.

Apparently, Denis Leary of Rescue Me, and the voice of the saber-tooth tiger Diego in the Ice Age movies, has released a new book (Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid), and it's causing some stir. Most specifically, Chapter 6 entitled "Autism Schmautism" has raised the ire of the autism community, and autism advocates like Jenny McCarthy and Holly Robinson Peete.

Since the October, 2008 release of quotes from his book, Leary has said the quotes were taken out of context but has apologized. Sort of. I won't get into the commentary here, but you can read my article over at Associated Content.

There. I feel better now.

~Jon

Autism Realities

2009-01-05T23:16:00.011-05:00

There's no one way to deal with, understand or treat autism. In the second chapter "The Realities", I try to show that this affliction is only a part of your child. We don't believe that autism is their definition any more than big feet or blonde hair would be. Is your daughter a red-haired girl, or is she really just a girl who happens to have red hair? You may not think there's a difference, but when it comes down to it, hair color is just one aspect. She probably has some odd quirks too, but you wouldn't call her "our odd daughter" (alright, maybe you would; I don't know you). But really: I hope you can see what I mean.

Regardless, you will find people who look at Autistics (big "A") as a culture; a group of neuro-diversity advocates who strive to encourage society to accept them or their family members for who they are. These are generally higher functioning autistics who do not seek treatment or a cure; rather, they live for inclusion of autistics the way they are. That's not to in any way say this group is wrong. Instead, this is another facet of the condition for you to research and consider.

In this chapter the anecdote "Same Child, Different Day" explains how we came to the decision that, not only is Nolan the same child he was the day before his diagnosis, but that we were not going to treat him differently either. As the last sentence of the short story says: "We refuse to let his condition cripple him and decided not long ago that he will graduate from high school; in that way, he's no different from his siblings."

One thing though: we didn't want this booklet to be clinical or dry. On the contrary; I try to keep you entertained throughout. But as with any good self-help manual, it's nice to have a glossary of terms; something to explain some of the concepts you just might come in contact with. What a coincidence: I included that here as well!

In the most formal part of the booklet, I have listed a few definitions for many terms you may encounter. From ABA (Applied Behavioral Analysis) to Thiomersal (or Thimerisal), there are explanations to nearly 30 of these concepts, and I hope they shed some light.

In fact, I hope you find that the entire booklet sheds some light for you. But if you still have questions or to order bulk copies, please email me.

~Jon

Autism, From One Parent to Another

2008-12-28T00:31:00.004-05:00

The first chapter of our little booklet Same Child Different Day: One family's experiences during the first year after a child's autism diagnosis, shares with you our thanks that you chose to pick us up in the first place. If you were to Google "autism books", there are almost 6.5 million results to scroll through. And in that pile, many entries contain even longer lists of top-rated autism books. Then when you consider all the manifestations autism can take, the research for which is the right book for you and your family is virtually never-ending.

And you are only at the beginning of the autism journey!

So we've tried to consolidate for you within 50 pages some of what you might need, like to know, or encounter. In writing it, I tried not to make the adventure seem scary; because autism isn't and shouldn't be scary. But I did include a few anecdotes, some little glimpses into our life and how our world has been turned upside down. Keep in mind though that what we've had to deal with may not (and probably won't) resemble your life and changes.

I have to be honest about the anecdotes, though. While it is true that our lifestyle has veered off our once-expected path, it has now become "what we know". In other words, while someone may be used to obedient kids, "typical days" and soccer schedules, we've become accustomed to meltdowns, "routine pandemonium" and therapies.

But that is in no way a bad thing; it's our thing. And you'll find your thing too. As long as you never lose sight of the fact that your kid is still the same squeezable little proginy as always --- that you didn't cause this "autism" thing (and your kiddo can't control it either), then you'll be doing alright.

If you'd like to read the first chapter, find where you can get your hands on a copy of the whole Same Child, Different Day booklet, or just talk some more, please send me an email.

~Jon

Same Child, Different Day Content

2008-12-25T23:52:00.004-05:00

I purposely started out Same Child, Different Day (SCDD) as a booklet. There are plenty of wonderful books on the subject of autism, and you should read them when you get the chance. But I wanted to create something that is thorough yet concise, that wouldn't be overwhelming while at the same time would provide enough information to be useful. Hopefully that's what I achieved.

Here's what I touched on in 8 chapters:

From One Parent to Another: In this chapter you'll find a brief introduction and a short anecdote. Two points are touched on that make up the foundation for the manual; that this in no way is representative of what you will encounter --- I only try to give you our experiences as an example of what you might run into; and that, though you can expect changes every day, your child is not one of them --- hence the title Same Child, Different Day. The brief anecdote is titled The Hair Cut, and is an experience that's representative of our every day
The Realities: Again, changes are the focus of this chapter. I also provide you with a list of almost 30 concepts and terms, a list that just scratches the surface, but you should find helpful. There's also an anecdote entitled Same Child, Different Day (you get the picture)
In Now That You Have a Diagnosis, I try to explain what the label means (and what it doesn't). I share with you some practical information and include an excerpt entitled The Database that you should find useful
Now, About Those Lifestyle Changes is a more in-depth look at what you might expect or even encounter. I try to provide you with some coping suggestions and share with you: The Mall Incident (quite funny, if I do say so myself), The Run-in (about people who are full of wonderful suggestions for you), The Comment (sometimes people just don't understand) and She Said That? (even professionals can say the darnedest things)
Bed Time is self-explanatory and includes an anecdote called Dread Time
The Unknown: This could easily have been the title of the booklet itself. I share with you the World of Random and a story about The First Meltdown
You can't forget to take a little time out for YOU. A Little Something for You tries to explain that it's okay to forgive yourself while being yourself
There's even a References section with book suggestions and website & mailing addresses to just a few of the most helpful places

This is an overview of SCDD --- I hope it's enough to entice you into a few copies for your group or organization.

Let me know.

~Jon

Help for a Recent Autism Diagnosis

2008-12-22T13:41:00.008-05:00

We live in central Vermont, in an area that's easily an hour away in any direction from the nearest Interstate highway. Our small state is only pierced by two of these international thruways and, unlike many of our neighbors, rest stops are few and far between. As a matter of fact, on these limited access highways, there are only a couple of manned information points and to miss one can literally mean you've missed them all.

There are information booths in most of our picturesque our towns, and many businesses support racks of free giveaway guides. But sometimes you have to travel miles off the beaten path to find the kiosks or get good directions. And sadly, Vermont probably coined the phrase "You cain't get they'uh from hea'yuh". More sadly: while you're looking to find where you're going, you can miss a lot of the beauty that's right beside you.

What does that have to do with anything? Well, it's true that this blog is about our autism booklet Same Child, Different Day. But I also want you to know that we are available to you as a resource. For those just hearing that your little one has autism can be utterly overwhelming. We want to be your Welcome Center rest stop on this mapless, sign-free highway.

You have hundreds of questions, and hundreds of places to look for answers. There's such an overload, you may even find that you need to pull over to the side of the road and cry. But if you pull in right now and ask for directions, we can give you the insight of a family living the difference. Slip off the information superhighway and send us an email (jongilbert@rocketmail.com); we'll answer your questions --- and if you'd prefer to talk as opposed to electronic words, we can make arrangements for that.

We don't want you to feel that this is the end of the beginning, or the beginning of the end. You are at the beginning of the beginning: the Welcome Center. The autism journey is a crooked road rife with hair-pin curves, dead ends, forks, cliffs, hills and valleys. Hardest of all, most of us don't even know exacly where we're going.

Let us know if you'd like to carpool.

~Jon

Same Child, Different Day: Special Recognition

2008-12-22T00:34:00.009-05:00

I talk like I created this booklet completely on my own. And while I did write, publish and print it pretty much solo, I couldn't have put a clean, finished product together without the invaluable help of some truly gracious people. Page 5 pays tribute to those special folks.

~My family has been terribly supportive, sometimes to the point of their own frustration. I stayed up for hours on end to get this completed, and sometimes took precious time from their own days. In the end, their patience made for a wonderful completed project.

~Heather Todd and Joannah Cornell of Kids on the Move (Rutland, VT) provided invaluable guidance in making the booklet an accurate read. They, along with several others and KOTM, have also been instrumental in helping Nolan cruise more smoothly along his path. They are directly responsible for his success and the success of this manual.

~Jenn gave me great proofreading assistance; Dean saw enough value in this project and let me have free use of the super-copier; Gwen provided invaluable tutoring on how to use said copier; and Vicky gets special credit for sharing her life with Corey. Thanks to all of you!

~And Finally, a special dedication goes out to Nolan: for years I've been writing without direction. Though I should and could have done something like this long ago, you inspired me to make it a reality. This booklet is for you, buddy.

~Jon (aka: Dad)

Welcome to Same Child, Different Day

2008-12-18T00:25:00.001-05:00

Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis is a 50-page booklet that was written by the father and family of a child with autism.

The title refers to the essence of the experience: Though your life and lifestyle will be an ever-changing journey, nothing about your child is any different, simply because of an autism diagnosis. The manual is meant to provide some insight into what you might experience during this first confusing year. It in no way shows what will definitely happen to your family or your child or suggest what you are bound to experience; but it does share with you some of what we encountered. Of course, your results will vary.

In Same Child, Different Day you'll find:
[] Casual, entertaining (and sometimes even humorous) anecdotes
[] Practical information from parents dealing with autism every day
[] Useful concepts and terms you are likely to encounter
[] Encouraging suggestions to help you get through each day
[] A starter list of useful references you should find helpful
[] And much more

If you're part of a group or organization serving families of autistic childern --- or you simply have more questions about this informative booklet, please send an email to: jongilbert@rocketmail.com for answers, pricing and bulk ordering information.