Ruth

Last Thursday morning, my grandmother passed away at the age of 92. She would've been 93 in a couple of weeks but she was as sharp and as funny as she had ever been. Her funeral was on Sunday and close to 70 people showed up to mourn her loss. I wasn't surprised, as my grandmother was the kind of person who made a lasting impression on everyone who met her. She was simply a character in the best sense of the word. What follows is a tribute I wrote for her funeral and I'd like to share it here.

When I think about my grandmother, there isn't any significant memory that stands out in my mind. Instead, I remember a million tiny moments. Like a photo album filled with snapshots, these memories scatter across my mental landscape like a continual stream of conscious.

I find this ironic since the definition of stream of conscious is:

"unedited and unfiltered thinking; a spontaneous and continuous flow of thoughts"

Anyone who knows my Grandmother knows that she was the essence of stream of conscious thinking.

One minute talking about how "so and so" just had a baby and then in a split second talking about a hurricane in Florida. As if the two events had something to do with each other.

Those who knew her well were familiar with the swiftness with which she changed topics and we learned to keep up. So, if you'll allow me to take a page from her book, I wanted to share some of my own stream of conscious memories of grandma:

The fact that there were always cookies on the counter in the kitchen and she made sure no one left her house without eating something.


Watching Young and the Restless everyday after lunch.


Playing cards at the kitchen table and her exasperation when Grandpa would always win.


Hanging out on the front porch as neighbors and friends would always stop by to visit.


Playing tic-tac-toe and hangman with me in church to keep me occupied and entertained.


The fact that she never took herself too seriously and didn't have a self-conscious bone in her body.


Her lap…which was like sinking into a soft cloud of baby powder and Jean Nate.


The sound of big band music floating through the kitchen while she would sing and dance in her apron.

This was my grandmother.

There is a quote that says,

"Because I have loved life, I shall have no sorrow to die."

It is this thought that gives me comfort during this time, because Grandma did indeed love her life.

And with her passing, I know that the sun will now shine a little brighter.
Because to me she was like the sun. A force of nature always radiating warmth and comfort as she touched the lives of the people who revolved around her.

With that said, shine on Grandma.

You will be so very very missed.

Even Mother Warriors Need A Vacation

After a self-imposed sabbatical I am back. I apologize for the absence but quite frankly I needed a break. Besides the fact that my new job renders me somewhat incoherent by day’s end, the truth is I’ve just been so sick of all things autism that I was longing for distraction.

For me, distraction came in the way of reconnecting with old friends (love Facebook!), going out to dinner with my husband (no kids allowed), and simply playing with and enjoying my kids for exactly who they are. No fretting about Ryan’s inability to sit still. No hand-wringing over Justin’s hoarding (which had disappeared but is now back with a vengeance).

It wasn’t easy, but it was definitely necessary.

Sometimes this journey feels like climbing a steep and icy slope. Then, just when you feel you have your footing, you feel yourself slip. If you’re lucky you catch yourself and recover. But sometimes you don’t. Sometimes you have to have the wherewithal to know when you’re tired and just be still.

But I’m back. I may not write as often because, honestly after working all day the last thing I want to do write. My original intent in writing was for having an outlet not an obligation.

Having said that, Christmas will be kicking into high gear soon and I’m sure I will have lots to write about. Until then, have a wonderful holiday and I’ll talk to you soon.

Raw

I've started and stopped this post about half a dozen times. And everytime when I would type the words I found that the feelings behind them were just a little too raw. There was no uplifting message, there was no humor to be found. Nothing but a mother's heart breaking just a little for her child. So I put this post on the shelf for a little while. I figured I'd give my feelings time to heal just a little. Then I read a post today by Jess Wilson. Her post today was filled with so many of the same feelings I've been experiencing that I revisited this post. Because what she wrote helped me. My hope is that my post will do the same for someone else. Jess...This one's for you, Girlfriend.

I knew Friday that this was going to be a long weekend. After work on Friday we had the annual Fall Festival at Ryan's school. An event filled with among other things, a donut eating contest, face painting and pumpkin tossing. The next day we, of course had Trick or Treating and the day after that was a birthday party. The weekend was packed with "kid filled" activities and I was already tired just thinking about it. But Ryan was so exited about the planned festivities that I tried to get into the spirit.

First up, Fall Festival. Picture the scene: about 100 parents and kids and a flurry of noise and activity. I wasn't sure how Justin would do with the crowd. About 5 minutes after our arrival I had my answer. With all the activity going on around him, Justin was, for the most part, checked out. No meltdowns, no tantrums, no reaction, at all. Any attempts to try and include him in any of the fun were ignored. Any attempts to get him to say hi to anyone else were also ignored. For the most part, his attention was divided between following the lines that were painted on the gymnasium floor and looking out the window. I kept thinking to myself that his reaction to this scene would have been identical had he been the only one in the room. Around me I watched the swirl of activity. I watched the kids laughing and playing and once again I watched as my child sat oblivious to it all, on the periphery. As I scanned the room I couldn't help but notice two mothers watching Justin and whispering to each other. I wanted to believe they weren't talking about Justin, but the unmistakable looks of pity that flooded their faces as they watched him told me otherwise. It all was just a little too much to bear. The thought that these ladies (that I didn't know) would look at my precious child as someone to be pitied brought me to a depth of sadness I've not yet known. Luckily, the time passed quickly, and although Ryan could've easily spent another hour there we cut our evening short.

The next night was Halloween. We actually had high hopes for the evening. Justin had mastered saying trick or treat and loved his cowboy costume. Then, 5 minutes before it was time to leave for the big event, Justin changes his mind. He peeled off his costume and refused to put it back on. The same costume that he has been wearing for weeks the minute he comes home from school, the same costume he insists on wearing to bed...including the hat. He simply declined and refused to go trick or treating.

So while all the other neighborhood children arrived for their treats, Justin escaped into the other room scripting "Bye-bye Jack" over and over (For the record I have no idea who Jack is). Every time the bell rang I was confronted by happy "typical" children infused with the sugary joy of the holiday. Every time the bell rang I was confronted with the notion that my baby has just "missed" yet another holiday.Because indeed it's not just Halloween. He's never experienced the joy of making out a Christmas list, or the anticipation of the Easter Bunnies arrival. He has absolutely no concept of what his birthday is. To him it's just another day.

Needless to say, by the time Sunday's birthday party rolled around I was spent. Again, as I looked at the other children I couldn't help but compare how far behind Justin is. I don't want to. I want so much to only rejoice in his accomplishments and not focus on his areas of weakness. But sometimes it can't be helped. The pendulum seems to endlessly swing back and forth between feeling proud of how far he's come and fear of how far he has to go.

This weekend I realized something about myself that I haven't wanted to admit. I really have a hard time being around other kids. I wish that wasn't the case. I wish that when I hear other parents brag about how their "little Johnny" is reading at age 4 that I could say, "That's great!" and mean it. But the truth is, I don't. The truth is I am so filled with envy I can taste it in my month.

As I said, this post has no happy ending or silver lining. But it is honest. The truth is, this is never an easy road and even for those of us with children who are "mildly affected" it doesn't lessen the impact that their disability can have on the heart of a parent who wants nothing less than everything for their child.

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!

Working 9 to 5

Or in my case, 8:00 to 4:00.

Next week will mark the beginning of yet another new chapter in our lives...I am going back to work full-time. You're looking at the newest Senior Habilitation Coordinator for a nearby county ARC. After months of searching in this competitive job market, Mike has not been able to find another sales job. So, after a lot of discussion, we decided that I would go back to work full-time and Mike would be stay home with the kids.

Dum-de-dum-dum!

My feelings about going back to work are mixed.

First of all, I was pretty damned impressed that after a 6-year absence from the workplace, that I was able to beat out three other applicants for the job. Not bad for an old broad (did I mention that my new boss is a good 10 years younger than me...Yikes).

In all honesty, I'm also excited about the prospect of getting up in the morning and having somewhere interesting to go. Somewhere where there's grown ups to talk to all day.

I have to be perfectly honest, I have no doubt that me staying home full time for all these years has been the best choice for my kids. When I think back just 2 years ago when we had three different therapists coming to the house everyday to work with Justin, it was indeed our only choice. There's no way I could've worked full-time when he was going through that...it would have been a logistical (and emotional) nightmare.

Having said that, being a stay at home parent is tough! Anybody who tells you otherwise has never tried it.

When I was in the hospital after giving birth to Ryan, I remember lying in my bed in my groovy Percodan state of mind and thought how great it was going to be to be at home with my new baby. Growing up a latch-key kid myself, I dreamed of doing things with my kids that I wished I'd done more of with my mom. Things like arts and crafts projects, baking chocolate chip cookies, making snowmen on a brisk winter's day.

And we did do all those things. Except that after making your 845th craft project you realize that your sick of cleaning up glue and paint from every conceivable surface (don't even get me started on glitter...I've seriously considered starting a petition to outlaw it altogether). Baking cookies is fun until you've eaten so many batches that you can see every bite manifest themselves as cellulite dimples on your ass. As for fun in the snow, you start to realize that the 30 minutes it takes to bundle your wee ones in their winter paraphenalia is simply not worth the effort when they complain after being outside for 5 minutes, "I'm cold. I want to go inside".

There are also unexpected challenges to being a stay at home parent. The boredom and bouts of loneliness were feelings that I was not prepared for.

And yet, I am loath to leave this life behind.

Why?

Because I've not missed a single "first" my kids have had. First words, first steps, first smiles. I was there for every single one of them.

Because for every frustrating moment, there have also been silly hilarious moments of playing with my kids that have made me laugh every single day.

Because there really is nothing better than waking up with your kids on a snowy morning and hearing the radio announce a “snow day”.

Because of the countless tiny vignettes that play like snapshots in my head and have comprised the past 6 years of my life.

It’s like that old saying, “I want to go…I just don’t want to leave.”

And, the truth is, I really am ready to turn this all over to my very capable husband (ready or not, Honey).

But I know a part of me will miss it forever.

Let's Hear It For the Ladies

I love men.

As a matter of fact, I have been blessed to have some truly exceptional men in my life.

My husband, my father, my grandfather...

and let me not forget the two little men in training I have who are currently beating the snot out of each other with their respective light sabers.

Yes, men are awesome.

But then there's women.

Mothers, sisters, friends.

What is it that connects us on such a spiritual level?

What is it that intuitively knows when a "sistah" is in trouble and needs...

a shoulder to cry on?

someone to talk to at 2 AM, no questions asked?

a good bottle of wine and a chick flick?

an ally, a comrade in arms, a cheerleader, a champion?

I don't know where it comes from, this magical power of female friendship.

I don't know why it is,

I'm just so glad it is.

With that in mind, a good friend emailed me the following and I thought I'd share.


Sisters

A young wife sat on a sofa on a hot humid day, drinking iced tea and visiting with her Mother. As they talked about life, about marriage, about the responsibilities of life and the obligations of adulthood, the mother clinked the ice cubes in her glass thoughtfully and turned a clear, sober glance upon her daughter.

"Don't forget your Sisters," she advised, swirling the tealeaves to the bottom of her glass.
"They'll be more important as you get older. No matter how much you love your husband, no matter how much you love the children you may have, you are still going to need Sisters. Remember to go places with them now and then; do things with them. Remember that 'Sisters' means ALL the women...your girlfriends, your daughters, and all your other women relatives too. You will need other women. Women always do."

What a funny piece of advice, the young woman thought. Haven't I just gotten married? Haven't I just joined the couple-world?

I am now a married woman, for goodness sake! A grownup! Surely, my husband and the family we may start will be all I need to make my life worthwhile!

Nevertheless, she listened to her Mother. She kept contact with her Sisters and made more women friends each year. As the years tumbled by, one after another, she gradually came to understand that her Mom really knew what she was talking about.

As time and nature work their changes and their mysteries upon a woman, Sisters are the mainstays of her life.

After more than 50 years of living in this world, here is what I have learned:

Time passes.
Life happens.
Distance separates.
Children grow up.
Jobs come and go.
Love waxes and wanes.
Men don't do what they're supposed to do.
Hearts break.
Parents die.
Colleagues forget favors.
Careers end.

BUT...

Sisters are there, no matter how much time and how many miles are between you. A girl friend is never farther away than needing her can reach.

When you have to walk that lonesome valley and you have to walk it by yourself, the women in your life will be on the valley's rim, cheering you on, praying for you, pulling for you, intervening onyour behalf, and waiting with open arms at the valley's end.

Sometimes, they will even break the rules and walk beside you...

Or come in and carry you out.

Girlfriends, daughters, granddaughters, daughters-in-law, sisters, sisters-in-law, Mothers, Grandmothers, aunties, nieces, cousins, and extended family, all bless our life!

The world wouldn't be the same without women...

and neither would I.

Coming out...

...of his shell, that is.

Justin has never been anti-social exactly. It's just that entering into Justin's world has always been a bit like trying to get into Studio 54. Some people are allowed past the velvet ropes and embraced with enthusiasm and affection.

Yet others don't quite make the cut.

Like Steve Rubell working the door, he just decides that certain people lack the right vibe and they are summarily dismissed and quite actively ignored.

While Mike, Ryan and I have always been privy to the inner sanctum of Justin's private club, there are, sadly, few other members.

Until recently.

Lately a subtle shift has been taking place and Justin has been reaching out more and more.

There was the little girl he approached at the beach. He grabbed her hand and said "hi". Then the two of them played in the water for 20 minutes. That's right. They played. As in, "together". For 20 minutes!

Need I say more?

There's his recent desire to be outside with the "Neighborhood Gang" (aka...the 3 to 6 kids who perpetually populate our neighboring backyards). His awareness and persistence in trying to keep up with this rowdy bunch has been nothing short of wonderful.

There was the recent visit with my younger brother (20 years my junior). Watching Justin tenuously allow his young uncle into his space, stirred feelings of tenderness in me that I really don't have the words describe.

The point is, with each week that passes, Justin is growing and developing more and more. Before our very eyes, he is morphing from baby to little boy. You'd think that after all this time I'd finally be ready for this metamorphous.

And I am.

Kind of.

Because it is a little disconcerting. In so many ways he is still very “baby-like”. Then out of nowhere, he will do something so completely unexpected. So completely age appropriate. And I’m completely thrown off kilter. It’s just hard sometimes to know when to push and when to protect, or over-protect, as the case may be.

One of my favorite sayings is how, as parents, our job is to give our children “roots and wings”.

Just keep flying, my little bird, and I promise I’ll be here to catch you if you fall.

Blink of an Eye

I am not old but mellow like good wine. ~ Stephen Phillips

Forty isn't old, if you're a tree ~ Anonymous

40

The big 4-0

I am in my 40's

Don't mind me. I just keep hoping that if I repeat this enough times that next week, on my actual birthday, I won't wake up, hide under the covers and cry.

Yes, it is true. This Wednesday marks the beginning of a new decade for me. And while I'm happy to say I entered my 30s with a positive, devil-may care attitude, turning 40 is an altogether different animal.

And not for the reasons one may think.

For example, it’s not because I "look 40". In all modesty, I think I can say that, aesthetically speaking, the years have been kind...although my emerging crows feet and post-partum belly (can you still call it that when your "baby" is 4?") could happily take a hike any day now.

No there won't be any Botox, hair extensions or dressing wildly inappropriately for my age (Hello...calling all Housewives of NYC, NJ, et al.) to make me feel better this birthday.
Truth be told, if they made a reality series about my life it would probably be called the Housewife of Mayberry, but I digress.

The reason for my uneasiness this birthday comes from feeling that life is going by entirely too fast. It's like one minute I was 19 with a whole life ahead of me. A life filled with starting a career, getting married, buying a house, having children. A life filled with beginnings.

Then I closed my eyes and blinked.

And when I opened them again, all those beginnings were behind me. So, now I’m left wondering, what lays ahead?

Endings?

It's as if the last 40 years have been a roller coaster ride. Slowly I've ascended the steep hill with butterflies of anticipation about what was to come. Now, I feel like my birthday will mark a rapid descent for which I am altogether unprepared.

If only life came with an emergency brake. Or, better yet, a rewind button.

I'm just so not ready for this chapter of my life to end and the next one to begin.

And yet I know it already has.

I see it in my mom with her twinkling eyes and her unmistakable growing resemblance to my grandfather.

I see it in my grandparents who, after years in a nursing home, are barely recognizable from the vibrant couple they once were (Alzheimer’s is a bitch of a thing).

I see it in my children as they try more and more to assert their growing independence.

I see it in the grey hairs that pepper my husband's head (I've got them too but years of coloring my hair have helped me stay in denial).

All of these changes seem to be taking place and yet, I don't feel any different.

I still feel like that 19-year-old girl with her whole life ahead of her.

Only, it isn't.

I've been thinking a lot about Kelly Corrigan's book the Middle Place. For those unfamiliar, it's her memoir of how a cancer diagnosis takes her past that "middle place" in life, when you’re a parent and a child at the same time, and becoming an authentic adult. Here's one of my favorite lines from her book:

"Even when all the paperwork — a marriage license, a notarized deed, two birth certificates, and seven years of tax returns — clearly indicates you’re an adult, but all the same, there you are, clutching the phone and thanking God that you’re still somebody’s daughter."

Obviously, I would never compare turning 40 to a cancer diagnosis, but that line still really resonates with me. I'm quite happy in my "middle place". I wrap it around me like a security blanket. I'm just not sure I'm ready to leave that place behind.

So, for all of those who love me, please be patient with me. I may pout a little bit on the "big day", but I'll get over it and, more importantly, over myself.

I may even learn to embrace being a full-blown adult. Maybe.

Here Endeth the Lesson

Well, we are back from our Maine vacation and after a week away, I have learned the following things…

That portable DVD players can be a godsend for long car rides.

That throwing rocks in the ocean and outrunning waves can provide hours of entertainment.

That if it weren't for french fries and potato chips, Justin probably would've starved on this trip.

That few things rival the beauty of the sun setting over the Atlantic.

That the ocean air does frightening things to my hair.

That a one-bedroom condominium looks a lot bigger on-line than in actuality.

That you don't so much care about your tiny digs when you’re just a few steps from the beach.

That Justin absolutely adores the ocean.

That places that force you to leave through the gift shop (Yeah, you York Zoo), should be avoided at all costs.

That Justin will always have "poop problems" on vacation...last time diarrhea this time constipation (sorry...TMI?)

That sometimes activities that should be so easy, can be painfully difficult.

That activities where you foresee challenges can sometimes, miraculously, go off without a hitch.

That a little bit of rain never stopped my kids from having fun outside.

That it's still hard to see Justin next to other kids his age and wonder if he'll ever catch up.

That I am completely in awe of Ryan's ability to make friends absolutely everywhere we go.

That when Ryan plays with his new found "posse" on the beach, it will still sting to see Justin forgotten on the sidelines.

That this will probably always bother me more than it will bothers him.

That where other kids may be afraid to get their clothes wet or dirty, my kids don't seem to share that feeling.

That a bunch of crayons and menus you can color can make the difference between a good restaurant experience and a bad one.

That you should always bring the stroller even if you think you won't need it.

That the fancy LL Bean water shoes will give Justin blisters on the back of his feet rendering him unable to walk comfortably in shoes (see the above).

That a week away is a very long time to be away from home...for all of us.

That I will rarely have a camera (with working batteries) at the perfect photo opportunity.

That when it comes to family vacations, there will always be highs, there will always be lows, but most importantly, there will always be memories.

Maine Revisited

Tomorrow morning we begin our vacation to one of our favorite places, Ogunquit, Maine. Maine is a very special place to us. It was the first place Mike and vacationed as boyfriend/girlfriend; it's where we spent a fabulous honeymoon; it's where we went for our first anniversary; and it's the place where Ryan has developed an absolute love affair with lobster and chowda.

Yet, instead of excitedly packing for our weeklong excursion, I find myself a tad bit ambivalent. You see, although Mike and I went to Maine last year a deux, the kids have not been back since the time right after Justin's diagnosis.

I'm trying so hard not to get my hopes up that Justin will be excited to spend all his days on the beach by the ocean. I'm also trying equally hard not to pessimistically expect the worst, by taking him away from the security of his home and everyday routine.

It's not easy.

I've never been very good at the "wait and see" approach. I am much more the "what can I control" type.

However, as I sit here and type, its hard not acknowledge all the things that have occurred in the two years since our last family trip.

Two years ago...

Justin wasn't talking...at all.

Ryan wasn't reading.

Justin's eye contact was sketchy.

Ryan couldn't swim.

Justin preferred to be alone.

Ryan couldn't ride a bike.

Justin wasn't potty trained.

Ryan couldn't snap, whistle or blow a bubble.

Justin spent most of his days in a fog that was hard to penetrate.

Two years later...

Justin is able to say hundreds of words and can even manage some 3-4 word sentences from time to time.

Ryan can read (although he doesn't like to) and recently showed off his writing abilities by writing RUSH (my musician husband's favorite band) on the windowsill of my kitchen...AARGH!!!

Justin almost always acknowledges when his name is called and has recently ventured into the world of joint attention (i.e. pointing while saying, “Hey, look!”)

Ryan can swim like a fish and has even been diving.

Justin still likes his "alone time" (don't we all?), but is happiest when playing with his big brother.

Ryan, just this week has really mastered his two-wheeler. The look of joyful pride when he was able to "push off" by himself and stay up, is a picture that will be indelibly burned on my brain.

Justin is not only potty trained but also stays completely dry during the night. Can I get an Amen!

Ryan can indeed snap, whistle and blow bubbles, oftentimes to the extreme annoyance of his parents.

Justin's "foggy" days are rare. He actually spends a lot more energy trying to be the center of attention.

Yes, it's amazing the changes that can occur in a scant two years time. Therefore, I promise to remind myself of that if this vacation turns out to be less than stellar for Justin.

After all, just think where he'll be two years from now.

Happy Birthday Baby Boy!

My Wish

I hope that the days come easy and the moments pass slow

And each road leads you where you want to go

And if you're faced with a choice, and you have to choose

I hope you choose the one that means the most to you.

And if one door opens to another door closed

I hope you keep on walkin' till you find the window

If it's cold outside, show the world the warmth of your smile

But more than anything, more than anything

My wish, for you, is that this life becomes all that you want it to

Your dreams stay big, and your worries stay small

You never need to carry more than you can hold

And while you're out there getting where you're getting to

I hope you know somebody loves you, and wants the same things too

Yeah, this, is my wish.

-Rascal Flats

Happy 4th birthday precious boy. Your mommy loves you very much!