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!