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.