Off Topic: My Wife's New Family Blog

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

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

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

Really.

Do it.

Please...

~Jon

Some December Tidbits from "Same Child, Different Day"

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

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

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

~Jon

Autism: A Speech Milestone

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

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

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

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

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

Good stuff, huh?

~Jon

Now Monitoring Comments on Same Child, Different Day

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

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

Thanks to a Loyal Reader for a Review of SCDD

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

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

Thanks again so much, Corrie!

Florida "Teacher" Suspended for Autism Vote Reinstated

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

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

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

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

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

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

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

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

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

Thanks for indulging me.

~Jon

Off Topic: Halloween

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

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