Why?

Like so many other young children, Ryan's favorite question when he was little was "Why"?

Why is the sky blue?
Why did the dinosaurs die?
Why do people believe in God?

I found that his barrage of questions was aggravating not only because of their frequency but also because it highlighted just how much actual knowledge I lacked about most things.

What am I Buddha?

However, as time passed, Ryan stopped asking so many questions and frankly has determined that he knows just about everything there is to know.

You'd think this would make me happy.

But then there's Justin.

I never knew just how much I would miss having to answer all those "why" questions until I realized that Justin wasn't asking questions at all.

The dreaded "wh" questions. The backbone to socially reciprocal conversation.

Like so many things for our kids, asking and answering questions is really hard. Truth be told, I really don't think I appreciated just how difficult and complex our language is until I had a child for which none of it came naturally. He has had to work so hard for every word, every concept, every nuance. Just when you think he has it, it's gone. It reminds me of the arcade game that Ryan loves to so much. It's the one with the "claw" that you lower down into a pile of stuffed animals, and then have to grab one without dropping it. Just when you think you've got it, it disappears.

I remember in the early days how I use to think that all of Justin's problems would be solved if only he could master talking. I automatically assumed that once the light bulb switched on that he would just "get it" and the rest would follow naturally. I had no idea that even after he had well over 300 words that he would still struggle with putting those words into a coherent and meaningful sentence.

Thankfully, little by little those sentences are coming. First came his ability to communicate his wants and needs. Then came some "what" questions. Over the summer came "where". Each step a building block for even more to come.

So, the other night, we were at the dinner table and Justin was looking disdainfully down at his plate. He is a very limited eater and was not at all happy with the cheeseburger that stared back at him. I have long since given up trying to cajole, beg, and bribe him into eating. My husband is more stubborn.

"Come on, Justin take a bite for daddy."
Silence
"Please, just take one bite."
More silence.
"Justin, please eat."
Wait for it...
"Why?"

HOLY CRAP!

I, who had no problem stuffing my face with said cheeseburger, nearly choked.

"What did you say? Did you say why? He said why!"

My husband shot me a look to say, calm down don't make him self-conscious. As if I'd scare him away like a skittish deer. But honest to God it was so cool. Now to be honest, I'm not sure if he understood what "why" meant. He wasn't waiting for a response from my husband and, no, we haven't heard it since.

But it's a start.

As an aside, last weekend at the movie theater, Ryan and I had some time to kill and they had one of those "claw" games there. With willful determination, Ryan put his money in the slot. I waited patiently while he gave it a shot, knowing it wasn’t going to happen. But then it did. With the finesse of an experienced crane operator, he grabbed his prize and out it came. Ryan is now the proud owner of a pink and purple fuzzy dolphin that he has slept with just about every night so far.

Why do people believe in God?

Because miracles happen everyday.

Where the Wild Things Are...Revisited

As I wrote in a previous post, Ryan and I were anxiously awaiting the release of Where the Wild Things Are, and last weekend we were amply rewarded.

Where The Wild Things Are was a wonder.

In my last post, I wrote about the similarities between Max and Justin. The thing I was unprepared for was how much Max reminded me of myself at that age.

You see, the movie takes place against the backdrop of a little boy dealing with, among other things, the aftermath of his parent's divorce. His mother is loving but busy and frazzled with not a lot of attention to spare. She also seems to be starting up a relationship with a new man whom Max doesn’t like.

This, in a nutshell, describes a large chunk of my childhood.

Parents divorced; Mom and Dad were loving but busy; couldn’t stand Mom's new boyfriend.

As much as I predominately remember having a happy childhood, I also remember it being a tumultuous time of my life. There were so many times that I was angry. That I was confused. That I was lonely.

So many of those feelings sprang up, not just because of my parent's divorce. But because that particular event precipitated the time in my life where a lot of the innocence drained from it. That time when I realized that Daddy wasn't a super-hero and Mommy wasn’t a fairy-princess. They were just people, with their own lives and their own set of problems that didn't always include me. There's nothing scarier for a child than to realize that their parents aren't perfect and they can't always make everything all better.

But that realization does come, it always does.

It has to.

But that doesn't mean that the period between leaving childhood innocence behind (no matter what the reason) and dealing with the fear and insecurity that's found on the other side, isn't anything less than terrifying.

Sitting in the movie theater and watching the raw emotional vulnerability wash over the face of the little boy who portrayed Max, opened up a floodgate of emotions that I thought had dried up long ago. It took me back to a place that I haven't visited in a long time.

And I cried.

A lot.

I tried to hide it as best I could, because I didn't want Ryan to be scared. Isn't it funny how the harder you try to choke the tears back, the more insistent they are on flowing freely?

Not surprisingly, Ryan noticed my crying. He didn't get scared or upset at seeing me cry. Instead, he put my arm around him, snuggled close, and whispered in my ear, "I love you, Mommy".

Then he looked at me and smiled.

That pure unadulterated smile of childhood innocence.

He still has it.

Despite everything we’ve been through as a family. Despite the number of times he's been robbed of attention that has instead often gone to his brother. Despite the number of times he's been yelled at by a mother who is often frustrated and tired and he's in my line of fire. Despite the number of times he's asked the not easily answered question, "When will Justin talk to me?"

He still has it.

There is no cynicism. There is no sadness.

He is simply all things joyful.

I'm not yet ready to say good-bye to the sweetness that lives inside him right now.

I want to somehow capture it. Hold onto it. Swallow it whole.

Please don't go...I'll eat you up I love you so

I think one of the main reasons watching little Max on that big screen was so hard, was because it reminded me, in vivid detail that Ryan too will go through his growing pains. And it will be hard to watch. And it will be messy and confusing. And it will be something that I will try to help him through but will probably find my efforts futile.

Because ultimately, growing up is a journey we all have to travel alone.

Did you ever have one of those nights...

...When you were sick as a dog with a cold and all you wanted to do was take a mega dose of Nyquil and go to bed early.

But then your son wakes up at 1:30 AM crying (which is unusual for him), so you run upstairs thinking, "Great. He must be sick with my cold."

So then, you find him sitting up in bed crying hysterically and without thinking (and without turning the lights on) you pick him up out of bed and place him on your hip.

But when you feel the warm "splat" against your nightgown, you realize that he doesn't have a cold, he has diarrhea, which has soaked through his pajamas and is quickly soaking through your nightgown.

So then you strip your hysterical child and place him on the toilet and pray he doesn't make a bigger mess while you run downstairs and wake your soundly sleeping husband to let him know you need reinforcements.

So then you quickly change out of your nightgown, hastily washing it in the sink (and it's 1:30 AM and although your awake you're barely coherent), while your husband goes upstairs to assess the damage in the bedroom.

And then you think, how the hell are you going to clean this child since you have stopped buying wet wipes since he's been potty trained (and you can hear the "potty training gods" snicker).

So you grab the first thing you can find which is paper towels and run back upstairs to your still hysterical child, all the while marveling at his older brother's ability to sleep through absolutely anything.

So then, you're back with hysterical child and realize that given the mess it is really easier to simply throw the pajamas out than try to wash them, which is a problem since these are his 2nd favorite pair of Elmo pajamas. Meanwhile your husband has stripped the bed and your older son is still blissfully asleep.

So then you clean hysterical child with wet paper towels, knowing full well that this would probably be much quicker if you just threw him in the shower to clean him up but know damn well that this would only push him completely over the edge so you use up half a roll trying to clean up his bum and "bits".

So now, he's clean, but still not happy because now he's naked and looking for Elmo pajamas. So you make the executive decision to trek down to the laundry room in the cold basement to find his 1st favorite pair of Elmo pajamas, which are stained with peanut butter, but given the alternative they will do just fine.

So then you get him dressed and your husband takes him downstairs to calm him down, while you spot check the 30 some odd stuffed animals on his bed to make sure that none of them were casualties of this nocturnal explosion because that would be a BIG problem (luckily they all got the all clear).

So then you go downstairs to join your husband who said he'd stay awake with now calm but wide-awake child, so that you could go back to bed. But then he's asleep within 10 minutes which really doesn't matter since said child really only wants to be on your lap, where he mercifully falls asleep 10 minutes later.

And it's now 2:00 in the morning and you have to be up in 4 hours to get ready for your new job. And you're really fucking sick with a miserable cold and the Nyquil has worn off.

So, um, yeah.

Did you ever have one of those nights?

Where the Wild Things Are

And now, cried Max, "let the wild rumpus start!"

Like so many others, we are anxiously awaiting the arrival of "Where the Wild Things Are", coming soon to a theater near everyone. This has always been a bedtime favorite for the boys. For those unfamiliar with the book, the story tells the tale of a rambunctious little boy named Max, who feels misunderstood by his mother when she sends him to his room for his mischievous play. One night after getting sent to bed without supper, Max "escapes" to "where the wild things are"...an imaginary world of colorful creatures.

In this fantastical world, Max is crowned king and he and his fellow "wild things" spend their days and nights dancing and frolicking to their hearts content. In the end, however, Max longs for the love and familiarity of his family and realizes ultimately that there's no place like home.

Even though the book is obviously fiction, it is a story that resonates greatly with me. Because in Justin, I feel I have my own little Max. So very often, Justin lives in a world of his own. Somewhat above and apart from the rest of the family, he's just not always quite in step.

As much as this has often caused me times of sorrow and frustration, I can only imagine how it must feel for him. I used to think Justin would isolate himself away from us because he didn't want to be around the rest of us. Eventually I came to realize that for Justin, his bedroom offers him escape to where his "wild things" are.

You see, Justin's room is replete with no less than 30 stuffed animals (and one rabbit statuary he absconded from my garden...don't ask). They are not all his, many are his brothers. Yet if a stuffed animal makes its way into our house, you can bet that eventually it will find its way into Justin bedroom.

Often, Justin can be heard talking to his animal creatures, singing to them, laughing with them, making up elaborate scenarios of play that only he would understand.

("Take that", I say to the doctor who coldly told me, he has absolutely no imaginary play skills).

This is his "safe place" to deal with whatever scary or stressful feelings he may be experiencing.

At times, I have tried to join this wonderful world of play, only to be told, "Bye-bye". At times, I have felt oddly jealous of his wild things because they were privy to the cherished conversation that Justin is so stingy about sharing with us. Despite my feelings, this has never been a world that Justin has wanted anyone to share.

Until yesterday.

I wandered upstairs to find him, quite literally, buried beneath his menagerie. I asked him, "What are you doing?"

He answered, "You wanna play?"

WHAT?!

I steadied myself. Don't get too excited, I told myself. After all, you know he always gets pronouns wrong. He probably meant, "He wants to play".

Slowly, I turned to leave.

"Where you going?"

And there it was. There was no misunderstanding his meaning. He wanted me to stay.

And stay I did.

Together we played with his animals, making them dance and sing and rumpus like there was no tomorrow.

Because, indeed, I don't know if there will be a tomorrow.

That's the thing with autism. Sometimes these moments are a breakthrough. Sometimes these moments are fleeting. But at the very least, I spent some time playing with Justin in his world "where the wild things are" and it was intoxicating. I could see the allure of him wanting to escape to this place when he may be feeling misunderstood and perhaps doesn't even understand himself.

Here amongst the wild things he finds total acceptance.

But like all good things it had to end as real life beckons. I can only hope that more and more, Justin, like Max, will continue to long for the love and familiarity of his family and realize ultimately that there's no place like home.

And Max the king of all wild things was lonely and wanted to be where someone loved him best of all.

Then all around from far away across the world he smelled good things to eat so he gave up being king of where the wild things are.

But the wild things cried, “Oh please don’t go-We’ll eat you up-we love you so!” And Max said, “No!”

The wild things roared their terrible roars and gnashed their terrible teeth and rolled their terrible eyes and showed their terrible claws but Max stepped into his private boat and waved

good-bye.

Where the Wild Things Are

by Maurice Sendak

Ch-ch-ch-ch-changes...

I know, I know...it's been awhile.

The past month has been a whirlwind of activity. We have bought a new car, got both kids back to school, got Ryan started with football, got me started at my new job, and have Michael adjusting to his new role of "house husband" (or, as he likes to be called, "Domestic Engineer").

Yes, we have indeed been busy, busy, busy, and it would be easy to say that this is the reason why I haven't written in awhile. And while this is certainly part of it, the truth of the matter is, there just hasn't been very much to write about.

That is to say, despite all the changes this month, there has been very little in the way of drama or problems to deal with. It has been (knock on wood) relatively smooth sailing.

For most people this would be a relief. For a family with a child on the spectrum, this is a miracle.

You see, kids on the autism spectrum are not really known for their great ability to go with the flow. Kicking and screaming is more often the name of the game, wth even small changes being met with frustration and fear and fighting.

And yet, all of the changes that our family have gone though these past few weeks have been met with calm and quiet serenity.

Now, that is a change that I can get behind.

Who's On First?

Justin: “You hungry?"
Me: "Are you hungry, Honey?"
Justin: "Yes"
Me: "What do you want to eat?"
Justin: "Hungry!"
Me: "Yes, Honey. I know you're hungry. What do you want to eat?"
Justin: "Eat, please!"
Me (modeling): "Okay. Say, I want..."
Justin: "I want..."
Me: "What?"
Justin: "What"
Me (frustrated): "Justin, what do you want to eat?"
Justin: "I want hungry. Okay? Thank you."

Such is the life with an echolaic child.

Echolalia.

It's one of those words that most people don't know, until it affects their child. That and the word "perseverate" (the act of fixating on something or repeatedly engaging in a behavior) should be certified code words for, “Yes I have a child on the autism spectrum and, yes, I drink a lot.”

Because echolalia and perseverative behaviors can really drive a parent over the edge like few other things can. Especially when these behaviors occur in concert.

Example:
Justin: "Look, a dinosaur"
Me: “Yes, Honey. That is a dinosaur"
Justin: "Look a dinosaur"
Me: “Hmm-mm, I see it."
Justin: “Look, a dinosaur."
Me: "Okay, Justin, let's talk about something else okay?"
Pause
Justin (whispering): "A dinosaur."
Me to my husband: "Do we have any wine left?"

Obviously, speech issues in our household are a big deal. In the two years that Justin has been receiving speech therapy, he's pretty much only gaining about 6 months for every year.

Not the language explosion we've all been wishing for.

For whatever reason, it's just not clicking for him.

When people ask, I describe Justin's speech abilities as similar to an American taking a class in Japanese 101. After some time they will learn some simple rote phrases and will understand some basic questions and requests. But take that same American and plop them down in the middle of a busy street in Tokyo and they'd probably be lost. The people would talk too fast, they may talk slang, they may be doing one thing but talking about something completely unrelated, rendering the American completely and utterly lost.

This is Justin.

Lost in translation.

The irony is that when it comes to where Justin is on the autism spectrum, his symptoms are mild. He has no real fears or phobias...the exception being he doesn’t really want to eat any food that isn’t a french fry or chicken nugget.

Oh yes, food phobias abound, but that is really about it.

As far as sensory issues go, they are few and far between. He will still cover his ears to certain "unpleasant" (not necessarily loud) noises and he also insists on watching certain unfamiliar shows/movies on TV from the side. As in, hiding to the side of the TV in case the visual picture proves to be just a little too much, he can turn away quickly.

Honestly, so many of the "red flags" that put him on the spectrum in the first place have really dissipated since that time of his initial diagnosis two years ago.

Except speech.

Watching Justin's speech progress has been like watching a tree grow. Excruciatingly and, at times, heartbreakingly slow.

I really don't have any smart or funny way to end this post. Sorry, I’m just not feeling too pithy today.

The fact of the matter is that I'm really fucking worried about Justin's language skills. The leaps, when they happen, are wonderful, but the plateaus last too damn long.

I often find myself, Googling the words "speech delay", desperate to hear stories of people whose speech was severely delayed as children and still managed to grow up as fully functioning adults. This has really been the only thing that has given me hope that Justin will get to where he needs to be. I always say to myself, if it can happen for some, it can happen for him.

I do sometimes wonder if there is more that we could be doing for him, but with him receiving speech therapy nearly everyday in school, I find it hard to subject him to more therapy when he comes home. The bottom line is, he is still a little boy and he deserves some sense of normalcy.

Hopefully, with him being back at school, we'll start to see some more progress soon.

For now, I just dream of the day when I will pick him up at the end of the day and be able to ask him, "What did you do today?" and have him actually answer me.

But, I have no delusions that this day will be here anytime soon.

So, until then, I will try to “enjoy” talking about "dinosaurs". After all, I have no doubt there will be plenty more in our future.

School Daze

The leaves are falling
One by one.
Summer's over
School's begun.

Today is a sad one around our household. Well, not for me and my husband. All things considered, he and I are trying hard not to dance a jig.

Because today is the last day of summer vacation.

(Insert sarcastic, mocking laughter here.)

Yes, everything is in place for tomorrow's first day of school. The supplies are bought. The backpacks and lunchboxes ready to be packed and the first day back to school outfits have been cleaned and ironed (don't be too impressed, the only other time I whip out the iron is for picture day.)

Luckily, my new job has not started yet, so I get to be here to enjoy this yearly rite of passage. I will also get the joy of embarrassing my children by taking a million pictures...but that's just gravy.

As much as I'm psyched that the kids are headed back to school it is a bittersweet event. It comes with the price tag of having to say good-bye to summer.

And I love summer.

And it's not just because I hate the long Northeast winters (but I do. I really, really do.) No, I love summer because it is a time where my senses are the most heightened. I love the way my body comes alive with the warmth of sunshine on my skin. The way my pulse instantly slows to the sound of birds singing outside my window.

But mostly, I love the silence.

I've mentioned before that we live a stones throw away from the elementary school and the junior high. During the school year, our street is a buzz of children walking to school and teachers jockeying for parking spots on our block. It can, at times, feel very invasive.

The nice thing is that I get a unique perspective from my window. Down the street, I can watch the little children with their over-sized backpacks embark on their first day of Kindergarten. I see the "big kids" in their bright yellow jackets that only the "Safety Patrol" gets to wear, so filled with importance at their responsibility. I watch across the street the "“tweens”" trying so hard to be cool yet filled with the awkwardness that only comes with adolescence. I watch the high school football players on the field across the street and how the girls giggle and whisper about who their crushes are.

I watch all of this from my window and I wonder.

I wonder how hard it will be to watch Ryan navigate this world of normal growing up, knowing that for Justin it will almost certainly be a struggle. I wonder how hard it will be on Ryan if he is popular and part of the "in" crowd and his brother isn't.

Will he be protective?

Will he be embarrassed?

Will these little children I watch, so filled with innocence, grow up to be friend or foe? Will they accept Justin as one of their own? Or will they taunt and tease?

Living here is a constant reminder of what we have to look forward to with our kids. Sometimes it's a good thing. Sometimes it's not. Sometimes thoughts like this are just a little too much to bear.

Summer vacation, brings reprieve. It allows me to exhale. It calms the chaos that is otherwise perpetually swirling in my head.

But tomorrow, school is in session again, bringing the curtain down on our blissful summer quiet. I'll pack away the summer memories along with the shorts and flip-flops.

I'll say good-bye to wandering amongst the perfume of my summer flowers.
I'll say good-bye to watching the boys chase fireflies dancing beneath the moon.
I'll say good-bye to days spent along the shores of sunny Adirondack beaches.

And I will, once again, inhale with bated breath, and wait for what is yet to come.

My Boys of Summer

Please excuse our regularly scheduled post for a completely indulgent opportunity to post pictures of my kids for their grandparents to see (they are cute little buggers though, aren't they?)

Besides, in the immortal words of Ferris Bueller:

"Life moves pretty fast. You don't stop and look around once in a while, you could miss it!"

Shhhhh!

There is an autism support forum I frequent fairly often. I found it very early on in the beginning of our autism spectrum journey and it has been, at times, a light in the dark when I really needed one. This board and the parents who post on it have provided more information and inspiration than any doctor has been able to do for us.

A sad commentary in itself, but that's another post entirely.

Recently, one of the parents asked the question, "Do I keep telling?" Apparently, his 5-year-old son has improved and progressed to the point where he easily passes for a neuro-typical child.

I held back on contributing on this topic, until some of the other responses came back from the other parents. It seemed, as if most of the parents whose children also could "pass for NT" were staying mum about their child's diagnosis.

Now, I'm really not one to stir the pot. When it comes to message boards, I'm a lurker by nature. Especially when I read posts that have the potential for getting contentious, I prefer to keep out of it...I don't need the drama.

But this time I didn't stay out of it.

To be fair, I understand the reasons why so many of these parents keep quiet. As many of them stated, they did it for their protection; they did it so their children wouldn't be singled out; some of older children also said they did it because they didn't feel it was their "secret" to reveal and it was up to their child to discuss it if they saw fit.

I understand these reasons and yet none of them really sat right with me.

I just kept thinking of all of the parents of children who can't pass for NT. Maybe it's just me being overly sensitive, but the unspoken message seemed to be, "Autism used to be a problem for me, but it's not anymore, so the rest of you are on your own".

I just took it as such a sad commentary, that so many of these parents have gone through hell with their kids. Whether it was holding their child's hand through ABA or biomedical treatments or other types of therapy, there's no denying that life in the family where there is a child on the spectrum can be harrowing. And yet, for those lucky enough where therapy makes a difference, so many parents seemed to prefer to just keep that information to themselves.

It made me think about the picnic I attended at Ryan's school last year. Ryan and I sat across from a little girl in his class and her mom. I asked about the matching t-shirts they were wearing that read "Alex's Lemonade Stand". I remember the look on this mother's face when she told that her daughter and fought, and survived, childhood cancer and that Alex’s Lemonade Stand is a foundation committed to raising money and awareness.

There was no look of shame or apology. Just pride. Pride that her child fought with every ounce of strength in her body to be well.

What really didn't sit right with me was when the original poster wrote that his wife had "no intention" of parading their child around as "the poster child for high functioning autism".

What I really wanted to write (and didn't for fear of getting slammed and not having my message heard at all), was:

If not your child, then whose child?

Instead, I wrote the following:

...I'm not saying that I shout my son's diagnosis from the rooftops, but I also don't keep it a secret (which it sounds like a lot of parents are doing).

I guess I just get a little tired of hearing parents bemoan the fact that the most common images of autism we have in the media are the most severe of cases. Could that be because so many parents aren't willing to "come out" and say that their child who "can practically pass for NT" is (was) even on the spectrum?

Maybe it's because my son is so young and his diagnosis is still so fresh in mind. I was scared. Really scared. I had no idea if my son would ever live a fully functional life. Thank God I found this message board, because it was like a life line to me. It gave me hope that someday (with a lot of therapy and prayers) he would be okay. I can't imagine where I'd be if parents on this board weren't willing to share their stories. I guess I'm just a little sad that it seems like many of these same parents aren't as vocal in their day to day lives.

Having said that, everyone has to do what they feel is the right thing for their particular child and their particular circumstance. Maybe if my son was older or could "pass" for NT, I would feel differently. But he can't... not yet anyway...

...as far as your wife's sentiment as to her not wanting your son to be a poster child for high functioning autism, I wonder if instead you both could see him as a poster child for "hope"?

For some parents, that could mean a world of difference.

8 Years and Counting

Number 987 why I love my husband:

While watching the ridiculously perfect Angelina Jolie in Mr. and Mrs. Smith last night, my husband casually looked at the television screen and said,

"Jeez, eat a sandwich or something, would ya".

Three cheers for men who like "curvy" women!

Happy Anniversary, Baby! I love you!