Choices We've Had to Make

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks, Everyone.

~Jon

Happy 6th Birthday Nolan

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

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

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

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

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

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

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

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

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

~Jon

Autism: The New Discrimination

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

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

I don't care.

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

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

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

~Jon

Autism Awareness: Define "normal"

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

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

• 
  
  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

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