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!

Bravery

I'll love you forever.

I'll like you for always.

As long as I'm living...

My baby you'll be.

Love You Forever...Robert Munsch

In the past few weeks, my children have shown me what true bravery is all about. For starters, Ryan started day camp last week at the local YMCA. As excited as he was in theory about camp starting I could feel his enthusiasm wane as we walked into the building. All around us, kids were a buzz, drunk with the freedom of being done with school and starting summer vacation.

In situations like this, where chaos reigns supreme, I tend to automatically shut down. I find the combination of noise and movement from too many people in a confined space altogether overwhelming for my senses. As I could feel myself run for cover in the inner sanctum of my own head, I glanced down at Ryan. He too looked to be a bit stunned by all the commotion run amok. Yet, instead of clinging to my leg or holding onto my hand, he looked up at me and said, "It's okay, Mommy. You can go now."

I always marvel at Ryan's willingness to try anything new, completely undeterred. Such a far cry from what I was like as a child, or even like now as an adult. Part of me wanted to take him out of there, afraid he'd be gobbled up by the fray of "big" kids. But, like getting into a cold pool, he took a deep breath and just jumped. My brave little knight.

The next honorable mention for bravery goes to Justin. Justin is a child who clings to certain routines. For instance when I drop him off at school, he unpacks his lunch from his little Elmo book bag, puts said bag in his assigned cubby, then says, "Good-bye" to me, at which point, I am to go...immediately. If I stay even for a few seconds to chat with his teacher he quickly becomes unglued.

Bedtime is a similar routine. We read the same story (Baby Einstein's Violet's House, if your interested), we say prayers, then he says, "Good-night" at which point I am to turn off the light and, once again, leave immediately. Well, a few nights ago I thought I'd shake things up a bit. As we read Violet's house, I thought t might be a good time to work on "where" questions. He's been doing so well with "what" and "who" that I thought we could try something new. As we read each page, I'd ask, Justin "Where is Violet?" Knowing he wouldn't know the answer, I'd model it for him (i.e. "She's in the kitchen".) I did this for a couple of pages until I realized that his huge brown eyes were welling up with tears.

He looked at me with such sadness on his face it sucked the breath right out of me. He quietly closed the book and said, "The end."

Now, I've seen him get angry when I've tried to teach him things and I've seen him get really annoyed with a look that says, "Just leave me alone". But this was altogether different. This was a look that conveyed, "I know I should know the answer, but I don't".

This was a look of...recognition.

A look that I was so completely unprepared for. I tried to scoop him up in my arms to comfort him, but he fended me off, too desperate now for the homeostasis of his normal routine. He cuddled himself under the covers, amidst the 28 or so stuffed animals he insists on sleeping with. Again, I wanted to whisk him out of his bed and cover him with kisses. To tell him how proud I was of him even if he didn't know the answer to the questions. I knew he wouldn't understand the meaning of my words, but I couldn't bear the thought that he might think he had disappointed me in some way.

I wanted to say so much to him. But, with silent tears coming down his cheeks, he looked at me bravely and said, "good night".

With that, I knew I had been dismissed. My services were no longer needed. He just wanted me to leave so he could find solitary comfort in his stuffed animal family and cry himself to sleep.

I've been truly haunted by these two images of my children this week. Completely unsettled at the notion that as my children get older, I won't always be able to protect them as much as my maternal instinct craves. Some battles they are simply going to have to fight on their own. It was so much easier when they were babies. I could just stick them in the Baby Bjorn and snarl at anyone who came too close. But as Ryan is always so quick to point out, they aren't babies anymore.

And yet, they are.

They are my babies. Age really has nothing to do with it. I'm sure I'll feel this way when they're in their 30's.

I just wonder, as a mother, do you ever really forget that feeling of fierce protectiveness you have for your children. What kind of courage must it take to let go of the fear. Fear that they'll get hurt. Fear that they'll have their hearts broken. Fear of not having control over everything that touches your precious child's world.

I know this is a courage I don’t possess yet.

But at least with my boys, I have some pretty good role models when the time does come to let go.