Rough Sleeper

Nolan doesn't know how to sleep.

"What's that?" you ask.  "Know how to sleep?  Like, he can't choose a position?"

No.  I quite literally mean exactly what I said: the boy doesn't appear to find the "natural periodic state of rest for the mind and body, in which the eyes usually close and consciousness is completely or partially lost, so that there is a decrease in bodily movement and responsiveness to external stimuli" (www.thefreedictionary.com).  I'll elaborate.

During school nights especially, we try to get Madison and Nolan to bed for 8:30 at the latest.  Sometimes we succeed with this, which is especially helpful when Lori and I are attending classes ourselves and need the time that they are zonked out to get our own work done.  More often than that, though, we aren’t even putting them in bed until about 8:30 --- and that is due to our own procrastinating.  There is a fear Lori and I share that we associate with most of the overly dramatic transition times in our house --- times that make a Lindsay Lohan temper tantrum look like a Teddy Bear picnic.

(Oh those dreaded transitions --- a time for fighting to get them off the iPad, screaming as they refuse to move down the hallway toward the bathroom, rerouting as that trip down the hallway turns into a detour into a random bedroom, our struggling to drag a limp, lifeless body back into the hallway, frustration as one child can’t resist admiring herself in the mirror, irritation as the other one can’t resist planting his lip prints on the same mirror, and concern as they both need to be retrained once again on the same procedures we retrained for the prior evening regarding teeth brushing, hand washing, potty using, medicine receiving and turn taking.)

Eventually, they make it into bed.  Stories have been read; covers have been pulled up to chins and kisses have been doled out.  Once the lights are off, we know what happens.  Every night.

“Mommy bed,” we hear, and we ignore.  “Daddy, Nolan Mommy bed?”  For now, it’s phrased as a question.

I don’t know why I always do, but I can’t continue to ignore him, and I answer every time.  “Go to sleep, Nolan.  In Nolan’s bed.”

“Mommy bed?!”  It’s a louder question this time.

“No, buddy.  Daddy’s laying in Mommy’s bed tonight.”

“Mommy bed!” he shouts again.  I ignore the request this time, and the cacophony of repetitive demands begins.

“Mommy bed.  Mommy bed!  Mommy bed!  Nolan Mommy bed!  Daddy, Nolan Mommy bed!”

And if we continue to ignore him: “MOOOOOMY BEEEEEEDDDD!” he screeches two octaves higher.

He knows the buttons to push.  “Nolan!” I tell him directly, “You are laying in Nolan’s bed, tonight!”

The debate continues for a little bit, and sometimes he even falls asleep.  Or so it seems at first.  He wasn’t always this way.  He used to insist on sleeping with one of us when he first started sleeping in a Big Bed…and we would usually give in.  Then one day, he just stopped.  He would fall asleep in his own bed and we wouldn’t hear from him until morning.  Then, about three months ago, it started up again.

The one piece that never seemed to go away, however, and happens without fail as though he’s on a timer, nearly every night at almost exactly 12:30 in the morning: Nolan screams.

It’s a scary sound, and often lasts for a half hour or longer.  Sometimes the screams are accompanied by moans, sleep talking, and other alarming, indescribable noises.  Quite often, while we assume he is sleeping, he will holler, “Mommy, no!” or “K’wee (his sister Kaleigh), stop it,” or some other random, sometimes inaudible statement, all the while maintaining the chorus of other unsettling sounds.  No one is in the room bothering him, and we have ruled out the cats sleeping too closely to him.

During this time, he also kicks, turns sideways, and rolls in his blanket like a Cheese Dog on a convenience store steam roller.  We try to calm him down by patting his back, and --- curiously --- sometimes yelling his name works.  There are nights though where no amount of consolation will work; the poor guy just will not sleep.

I guess that’s a bit of an exaggeration.  He sleeps, of course, if ever so very lightly; and not very well, or very deeply.

I’d imagine that’s why he ends up in our Mommy’s bed, anyhow.  

Special Occasions: Who's Expectation is it, Anyway?

I've mentioned before about the difficulty with holidays and special occasions where our son Nolan is concerned.  He wears the label of “classic autism”, if one can even be described as such.  There are times when he is the “stimmy”, “routine-y”, “bouncy”, “no-eye-contact” template of the definition.  Other days, he won’t stop hugging us or stop talking (granted, the “talking” is generally a constant repeat of a three-line section from a SpongeBob episode, which I guess would be back to the routine and stimming).  But, rarely does he get excited in anticipation of anything other than returning home to fire up the iPad.

His sister Madison dons a PDD-NOS diagnosis (which she will relinquish when the bright, shiny, new DSM-V hits newsstands), and on a good day would easily be mistaken for one of her neurotypical peers.  Tell her there’s a birthday coming up (hers or a friend’s), or that Santa is even weeks away, and she glows with anticipation.

When any big day is upon us, Mad is as excited as a Chihuahua is to a doorbell.  She salivates at the thought of a new doll, an art set, a picture drawn in crayon.  To her, opening gifts is an event to be savored.  And no matter what is inside, no matter how trivial it may appear to an outsider, to Madison, it is keys to Cinderella’s castle.

Nolan, on the other hand, remains stoic and resolute.  No, sir --- no silly gifts will loosen his resolve to stay glued to whichever electronic device we forgot to put away the night before.  It isn't in him to get excited about what’s inside the red, green, uninteresting paper.  Oh, he has little problem responding in one way or another to the product inside, but unlike Mad, his reaction is never what a parent expects or wishes for their child.

This Christmas wasn't much different, though it was better (for us) than holidays in the past.  He was a little more excited; slightly more animated when he opened his gifts.  It could have been the electronic nature of them, or he could have genuinely been energized.  Either way, his eyes seemed to shine a little brighter (if that could even be possible), and his smile was more genuine.

I don’t know if it really matters either way.  I mean, to us as parents, we want him to be happy, and excited, and to look forward to his birthday.  But if he doesn't get that way, is that on him, or on us?  What if he’s satisfied with whatever emotion he is feeling?  He doesn't have any idea he is missing out on anything…because, to him, he isn't.

The rest of the year, the word “normal” frustrates us to aggravation or tears, depending on the situation.  Yet, when a special event rolls around, our hearts are broken that our kiddos don’t have a “normal” reaction to the occasion.

Sometimes it isn't our kids who have the difficulty. 

~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: 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

Autism: Fighting the battles you can win

I started today's post as a rant, which I said in April I wouldn't do again. A couple of people had said some idiotic things that tripped my trigger, and I was going to go off on how insensitive and unthinking people can be. But then I realized that these people don't have a clue about autism, so I decided, what's the point?

Instead, I thought I'd share with you another autism anecdote, something that happened to us just this morning and that typifies what we go through every day.

When getting the kids together in the morning, I admit that either a SpongeBob Squarepants, Dora the Explorer or Blues Clues DVD will be playing in the background. It's a battle we've decided is better "lost" than challenged while trying to give meds, brush teeth and everything else involved in trying to get a couple of high maintenance kids together for school. Anything we can to to make the process as emotionless as possible --- for us --- is a good thing.

This morning we were on an episode of the square sponge of which Nolan is not especially fond. He knows about "skipping" the episodes and ran to grab the remote. Practiced as we are at this game, it was a no-brainer what he was asking, and we attempted to move the episode along. Several presses of the remote met with no results, and Nolan became visibly upset.

He began to whine and repeated "skip, skip" in his own pronunciation. We thought to change the batteries, hoping that would do the trick.

We've just moved and our house is still yet to be fully unpacked. So, finding a set of small triple-A batteries hidden amongst the boxes labeled "Kitchen", "Kids Stuff" and "Your Guess is as Good as Mine" was a near impossibility. We were fortunate however and snuck some out of a small, light-up fan we had just bought him.

By now he was melting down, giving a crying fit that no parent wants a child to suffer before school. But he's yet to learn patience or the limitations of something that's broken. It has worked every other time without incident, so why not today, People?

We opened the remote and realized right away that no amount of changed batteries would do anything to help the situation. Tipping the remote upside-down, a small amount of moisture/water/some unknown liquid trickled from the hand held and onto the entertainment center. Oh happy day! We tried, but the batteries just ended up getting wet.

Nolan's meltdown now in high gear, we realized the only remedy would be another DVD, and fast. We popped out SpongeBob and slipped in a Looney Toons collection. It worked, and fortunately the bus was less than two episodes away. Nolan calmed down and all was quiet on the homefront.

It would be better if we could get the mornings going without movies altogether. But we're willing to accept that there are other places we can put our collective foot down. Morning just isn't that place.

~ Jon

Same Child, Different Day: A Little Something for You

The last official chapter in this autism support booklet is "A Little Something For You". The entire point of this final labeled section is: 'Never loose contact with yourself.'

Your time as the parent of a child with special needs --- in this case, autism --- will mostly be devoid of "me time". So when you get free moments, take full advantage of them. It sounds so simple, yet it gets forgotten so easily. You can not take care of your child if you can't take care of you first.

You will feel guilty about it too; that's inevitable. But this chapter briefly lets you know that forgiveness of yourself above all others is paramount.

It's also useless to blame yourself for this sudden life-altering circumstance as well. Instead, celebrate the successes as they come. And remember, we're all here for you --- you are not alone and always have someone you can turn to. Always.

~ Jon

Same Child, Different Day: The Unknown

Autism is an unknown. My good friend Heidi, whom I've mentioned before, has a great saying: "If you've seen one child with autism...you've seen --- one child with autism". No two are alike, yet its the differences that join them.

The chapter of Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis entitled "The Unknown" is similar to "Bedtime" in that it's a short by informative chapter. It talks about those differences and many more: like what causes our son's meltdowns, won't be what causes your child's. Yet, it's those meltdowns that make them so similar.

And the cause of autism is yet to be proven; which makes it difficult to find the right mix of therapies that will work for you and yours. But what works for you, though it will differ from us and the rest of the world, will be what works for you. It's as simple as that.

There's the connection: It's all these differences that bind us. And that's what this chapter tries to share.

If you'd like to read more of Same Child, Different Day, you can buy a copy (or several for your organization). Just click the PayPal link in the sidebar.

~ Jon

Jenny McCarthy...again!

Jenny McCarthy. Jenny McCarthy. Jenny McCarthy. I'm guilty to admit that if I keep hearing the name Jenny McCarthy every time a news or Hollywood outlet mentions autism, I'm going to have a melt-down of my own.

I promised when I started this blog, that it would only be about Same Child, Different Day and anything that promotes, supports or supplements it. And I swore to myself I this wouldn't be a rant blog. I've had bad luck with that in the past so let's just say, I'll try to make this the only one of it's kind.

Jenny McCarthy has a son with autism; granted and my prayers to her. And she's found what she believes is a treatment that seems to have cured him, in her eyes; hallelujah and praise God. If it's true, nothing aside from the same happening to my own child would make me happier. But, for all the reporting outlets to have dubbed her the end-all and know-all when it comes to autism is finally getting to me. She purports herself to be a self-appointed autism advocate for parents, but I don't recall asking her to be my self-righteous martyr.

First and foremost, there are countless fantastic families and individuals who have done as much if not more where the diagnosis has touched them. But you don't hear about them because, unlike Ms. McCarty, they don't have piles of cash, unlimited free time or the benefit of celebrity to thrust them into the limelight. On the contrary: many have given up jobs and homes, to move in with family and devote all their time and money into caring for their child, because their state, insurance company or community won't or simply can't help them otherwise.

Also, Ms. McCarty has found apparent success with her son's particular issues. However, as my good friend Heidi is fond of saying: if you've seen one kid with autism, you've seen one kid with autism. What works for Jenny McCarty didn't work in our specific situation, and it may or may not work for you. But the celebrity community-at-large has embraced Jenny, and have chosen to utilize her as a resource for all things autism. That's an unhealthy route to take, when you consider she does have a specific agenda she's pushing, and knowing that not all of those affected by autism share the same beliefs.

Yet, Jenny McCarthy is called upon time and time again to answer every question that could be asked regarding autism. I'm not claiming that any other person would be better versed on the subject, especially not a school-trained stranger not living the autism maze. But there are other families experiencing this condition, parents who don't hold a narrow-minded focus or agenda. It's the way of our society: popularity is the biggest factor we use in determining the most qualified authority. Just once I'd like to see the news media call on a regular family with a typical laundry list of daily tasks, a reasonable income and no axe to grind.

Anyhow, I said I wouldn't rant, and I don't want to get all irrational and thoughtless. And I surely don't want to invalidate the struggle I'm sure Jenny goes through on a daily basis. No matter the degree, autism is a challenging, life-changing diagnosis. I just wish society had chosen a more appropriate representative.

~ Jon

Now, About Those Lifestyle Changes

It's been some time since I've posted; I have been working on a few projects to promote Same Child, Different Day, and the Blog got overlooked. Back to it for you...

And for you, the next chapter in the booklet is titled "Now, About Those Lifestyle Changes"; it's no coincidence that this is the longest chapter in the guide. In this section I try to describe to you the scope of what we mean when we say "same child, different day". But I could only begin to give you a feeing for what you can come to expect. Your 'different days' will not mirror ours and to bequite honest, they won't mimic each other from one to the next.

As a matter of fact, the days of certainty and predictability will be replaced by unexpected adventure and learning. I feel confident when I say that I can think of no neuro-typical family who experiences or learns from their days quite as much as that of an autistic child. Just try to keep in mind that anything you are experiencing barely scratches the skin of what your youngster is going through.

In this chapter I also introduce the signature anecdote, simply titled "The Mall Incident". It vividly shares the often times embarrassing public meltdown, and provides a snapshot of what it's like to be on display for the world.

That's not to say you should shutter out the world, nor willingly hide behind walls. The stares and comments are aggravating, but you and your youngster with autism have the same restaurant, mall and hotel privilages as anyone not on the spectrum. Though convincing yourself of that will be harder that trying to enlighten strangers; even when their ignorance about autism may seem unbelievable.

Most frustrating and surprising though, can be the reaction toward your child from the very people who should be helping him. Even trained health professionals can be callous and insensitive. I share a story of one such encounter when we visited the office of Nolan's eye doctor. One staff member made us rethink a follow-up visit to that particular clinic.

To lessen the daily burden however, a short list of helpful tips is included in this section. Most of them are common sense and you may do many of them anyhow. But if not, (or even if you look at this list as a tiny reminder), we hope they'll prepare you a little better and make each day a little less different.

~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