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

Autism: Discontinued State Insurance Coverage

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

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

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