GUESS WHAT! GUESS WHAT! GUESS WHAT!

Melissa

Guess what we’re going to do tomorrow for the first time EVER?

Duhdee and I get to go to our very first…PARENT TEACHER CONFERENCE. Not an IEP meeting! An honest to Betsy PARENT FREAKING TEACHER CONFERENCE! There will be no attendance sheet, no progress report to add to his monstrous IEP file, no one is going to try to pull our placement out from under our feet, no one is going to talk about f*cking measurable annual goals…HECK, there won’t even be a TEAM.  It’s just us and the teacher!

We’re going to be normal parents. Except for the part where I CRY and hug the teacher because I’d totally given up on ever having a normal damned PARENT TEACHER CONFERENCE.

I’m pretty fricking excited about it too…srsly. It don’t take much to excite me these days, does it?

It’s a DOVER!

Melissa

Monkey is going through a very intense YouTube phase. Obviously, YouTube itself isn’t the phase. The child has been obsessed with YouTube for ages, it is what motivated him to learn to use a computer in the first place. The clips he watches on YouTube change as his interests change.

Right now we are in an intense elevator period. I’ve asked before how to use these interests to teach him but it suddenly dawned on me yesterday that I don’t need to do anything to make these educational. He’s learning without any added input from me. Why make flashcards and pester the boy when he’s learning so much, including how to read, just by watching fun videos on YouTube?

What finally made the lesson stick is that Monkey called me over to the computer yesterday, “Money, look! Look!” As I stood next to him he maintained an excited monologue, “It’s a Dover! 23!” (and the elevator was a Dover…the clip title said so…and it did go to floor 23.) “Otis! Parking garage! To 4!” (and it was an Otis elevator in a parking garage…the clip title said so…and it went to the 4th floor). It was this way for clip after clip after clip.

I’ve been listening to him perfect vocabulary words over the last couple of weeks and a lot of them are words he’s heard on these clips and is now motivated to learn. He’s still learning from us, we repeat the words to him over and over and over again in conversation helping in the process, but the motivation to learn is coming from YouTube. I feel so fortunate to live in a time when we have so much technology to help our kids. Even the seemingly pointless technology like YouTube has been such a gift for our boy.

How many of you are guilty of this too?

Melissa

I know just about every mom falls into this trap but I think it’s especially true of moms of kids with special needs. In an effort to be good mom or, in my case, to encourage whatever bits of successful communication I heard from my little Monkey, we become very responsive…in my case, perhaps a bit…hyper-responsive. I so desperately wanted him to talk for so long that, once he started to talk, I did whatever he asked because OMG! HE ASKED! Then it got to be habit.

I’ve tried to back off. If I do everything he asks he’d never walk down stairs, he’d never put his own socks on, he’d never go to school (we’d just ride the Green Line all day.) Clearly he does all of those things now ((I do sometimes still carry him down the stairs as a special treat *shh*)) so I have gotten better. I just haven’t quite broken him of his habits…a conversation from this morning.

Scene: I was sitting at the dining room table with a monster cup of tea and my laptop. Monkey was in our living room, just out of sight.

Monkey:  Money! C’mere.

Money: … (sipping tea, reading facebook)

Monkey:  MONEY! I did it!

Money: What did you do?

Monkey: I did it, I fixed ’em! C’mere!

Money: What did you fix?

Monkey: C’mere, Money!

Money: …

Monkey: Money!

Money: …

Monkey: Money! MONEYYYYYYYYYYY!

Money gets up, clearly this is an emergency!  She walks to the living room and sees her son sitting on the couch, his eyes glued to his laptop screen, with one hand stretched out toward her holding…his dirty socks. She stands silently, watching him, eyebrows nearly merged with her hairline.

Monkey looks up, grins, hand still out: Take ’em?

No, Money didn’t “take ’em”. I think I still have lots of work to do in this area…

Welcome to Holland

Melissa

I’ve had a rocky relationship with this well-known bit of writing. It has comforted me and it has angered me. I actually took a great deal of comfort in it in the first few dark days when I was in such shock. I needed some sort of hope that it would all turn out OK because I couldn’t see any possibility of that on my own. Then, once reality started settling, it made me angry as hell. My whole life got blown to hell and you’re telling me it’s just a detour and I’LL GET OVER IT??? That I’ll find JOY in it, you dumb @ss @#$&@^#*&?

I’m back to a place of taking comfort in it because, guess what? The author has lived this life and she actually knew something I couldn’t know back then. It does get better. You can find an appreciation for this unexpected detour. You can make great discoveries, the biggest for me, was the discovery of true joy in this life. I’m not saying this to cheer anyone up or provide encouragement to new families, you’ll walk your own road and I hope some day you’ll get here too, I’m saying it because it has been true for me.

But it’s not all beauty and discovery and I feel like the original didn’t fully recognize the pain and heartbreak of Holland. I saw this blog entry shared on Facebook today and I think it’s a nice addition to the Welcome to Holland essay:

My Holland from A Diary of a Mom.

For my Italian friends … The following is based on the beautiful essay, Welcome to Holland, by Emily Perl Kingsley.

There are the days that I wouldn’t trade Holland for the world

The days that I stand in awe of the windmills’ quaint majesty

And marvel at the overwhelming beauty of the tulip fields

There are the days that I scoff at Italy

The days that I feel downright sorry for those who have never been to Holland

Never wondered at the beauty created by Rembrandt’s brush

What they are missing here, I tell myself

Poor souls!

How much richer they’d be for a visit someday

For a walk in these wooden shoes

**

And then there are the days that I look more closely at the Dutch landscape

The days that I see past the tulip fields to the mothers wringing their hands, waiting – always waiting

The days that I see the doctors – the specialists and therapists – everywhere it seems, filling the streets, doffing their caps as they move from one house to the next – an endless conveyor belt of service and need

There are the days that I see the siblings, struggling with dual citizenship in two dramatically different nations – neither of which they can fully claim as their own

There are the days that I can no longer smell the fragrance of the flowers for the stench of desperation and fear

The days that I send my girls off on the train, backpacks full with supplies for their daily trip to Italy

Knowing that only one of them speaks a word of Italian

Relying on a host of translators and guides to keep my youngest safe on such desperately foreign soil

There are the days that my heart simply breaks because I can’t make the whole world speak Dutch

There are the days that I watch the planes flying in – filled with mothers clutching their children, looking out the window, ready to point to the Spanish Steps and the Colosseum – knowing they’ll find out soon enough, that’s not where they are

There are the days when I wonder if my girl even notices the windmills, or the tulips – if she knows there are Rembrandts here

Or if she simply wishes that she were in Rome

**

There are the days that I see my Holland for what it really is

A breathtakingly beautiful place

A place full of love and compassion

Freedom and camaraderie

And a place where children hurt and mothers’ hearts ache with the impotence of not being able to make it better

Wretches & Jabberers

Melissa

I may be hopelessly behind the times but have you heard of this movie?

In Wretches & Jabberers: And Stories from the Road, two men with autism embark on a global quest to change attitudes about disability and intelligence. Determined to put a new face on autism, Tracy Thresher, 42, and Larry Bissonnette, 52, travel to Sri Lanka, Japan and Finland. At each stop, they dissect public attitudes about autism and issue a hopeful challenge to reconsider competency and the future.

Growing up, Thresher and Bissonnette were presumed “retarded” and excluded from normal schooling. With limited speech, they both faced lives of social isolation in mental institutions or adult disability centers. When they learned as adults to communicate by typing, their lives changed dramatically. Their world tour message is that the same possibility exists for others like themselves.

Between moving and transformative encounters with young men and women with autism, parents and students, Thresher and Bissonnette take time to explore local sights and culture; dipping and dodging through Sri Lankan traffic in motorized tuk-tuks, discussing the purpose of life with a Buddhist monk and finally relaxing in a traditional Finnish sauna. Along the way, they reunite with old friends, expand the isolated world of a talented young painter and make new allies in their cause.

From beginning to end, Thresher and Bissonnette inspire parents and young men and women with autism with a poignant narrative of personal struggle that always rings with intelligence, humor, hope and courage.

Check out the website: Wretches & Jabberers

And the trailer:

Duhdee’s nose is a bit out of joint.

Melissa

Some friends and I are planning a weekend retreat and there are “NO BOYS ALLOWED!” I’m terribly excited, I’ve not had a mommy’s weekend ever. Duhdee has taken a few weekends over the years to go snowmobiling with the guys but I’ve just never felt the urge to do the same.

In a matter of a few days my thinking has been transformed from “I just don’t see the point.” to “OMG, I WILL GO ANYWHERE YOU WANT TO GO! EVEN CANADA!” This change may have had a little something to do with the approximately one gallon of mostly digested chicken nuggets I found myself cleaning up the other night or perhaps the puddle of still warm pee I stepped in right in front of the toilet. Perhaps.

I knew Duhdee was going to be jealous because the other Moms who are going are some of the most amazing people on the planet ((And I’m not just saying that because I need this weekend away, lol.)) but I didn’t realize he was going to be this jealous. This morning while I was getting dressed, he was encouraging Monkey’s latest phrase du jour…

“Get OUT!” my little Monkey-man roared. I might have been offended if he’d been able to say it without laughing or if, you know, the whole point wasn’t my getting OUT for a few days.

Why I’ll never be a good enough parent.

Melissa

My friend Holly commented recently that she’s noticed that it’s the wrong parents who are questioning their parenting skills. That got me thinking…

I’ll never be a good enough parent and I’ll sure as hell never be a great one and I don’t want to be. It’s this feeling of having to try 10 times as hard just to barely keep up that motivates me to do the things I do with Monkey. It’s what keeps me searching for new ways to help him, for new ways to make his life better, for new ways to make him more like the other kids.

If I were a good parent or, dog forbid, a great one, I could coast. I could sit here at my keyboard and drone on and on about all the amazing things I do. I could sit here and type endlessly about all the amazing things Monkey does and just ignore all the strange or annoying things he does that make him stand out as being not quite right…things that make him not quite fit in. I don’t want that…ever.

I’ve said before that we’re big picture people. We want Monkey to have it all, not just right now when he’s 6 and we can control what that means to a large extent. We want him to have it all when he’s 16, when he’s 26, when he’s 66. I don’t just want him to not be picked on, I want him to be a part of life.

I’m going to assume that each and everyone of you knew someone with a disability when you were growing up.  I’m also going to assume that you said nice things to this person in the halls, that you never picked on them or laughed at them or left them out of activities, OK? Now, can you tell me where that person is right now? Where they live? If anyone ever invites them to a movie or to just hang out?  What about one of your non-disabled friends from when you were growing up?  Right.

Until we get to the point when Monkey is 20-something, in college or living on his own and still hanging with his peeps on occasion (because, really, the boy had better be working hard at whatever he’s doing, it’s not all play-time my friends!) I’ll never consider myself to have done a good enough job. If beating myself up and constantly feeling like I should have done more or done things differently is what it will take, then that’s OK.

I can take it and the pay-off will be monumental.

I have figured out the answer to my question.

Melissa

Earlier this month I was asking, “Why can’t I let this go?” in regards to Halloween. I read an article on Boston.com today and leave it to another parent to provide the answer.

Other than her wedding and the births of her children, said Diane Carfarelli, her happiest family moment remains Jack’s first go-out Halloween. “I always wanted him to have the childhood he deserves,’’ she said softly, when asked what having that experience meant to her, “even if I’m uncertain about his future.’’

*Tears* That’s just it exactly. I want that for Monkey too and every time one of these seemingly pointless rituals turns into a failure…I feel like I have failed him.

The article can be read here: Facing down fear, a treat at a time. School helps autistic children find some Halloween joy.