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therapy services need the same amount and quality of services, and once a limit has been reached, said services are withdrawn by the bureaucracy.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

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

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

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

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"

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

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!

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

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