Some December Tidbits from "Same Child, Different Day"

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

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

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

~Jon

Autism and Medical Marijuana

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

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

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

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

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

Please share your thoughts and feelings.

~Jon

Autism and Potty Training: Calling all suggestions

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

Autism and Bullying

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

Autism Realities

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