It’s kind of hard to follow a post like that last one.

Things aren’t much changed. We still don’t know why and likely never will. We’ve talked with Monkey about it but it’s hard to know what he understands. We’re trying to be careful to use very precise language so we don’t inadvertently scare him. We have discussed how sad we are. He has listened and offered no comment. I think it’s time we leave the topic alone now unless he brings it up. We’ve kept the teacher updated on what we have told him just in case she hears something from him at school.

We’ve moved on to preparing for Christmas over the last week. The house is almost completely decorated. Duhdee has a couple little things to add to the outside decorations but I’m flat out of places to hang lights. We have gone completely nuts here decorating. The last two years we ran out of time and energy and just never seemed to get it all together. This year we started the day after Thanksgiving and by the end of the weekend we were 80% done. I started my Christmas shopping Thanksgiving day too. Instead of venturing out on Black Friday I took advantage of the online sales and got the worst of it done. (Yes, worst, I hate shopping!)

Monkey, as usual, has been a huge fan of the Christmas decor. He’s all about “Santa” (last year it was just “Ta”) and the “Angel” (last year I don’t think he even had any word for it!) Earlier today, he and Duhdee were playing with an app on Duhdee’s new Android phone, that interacts with our home automation system, and turning the lights on the Christmas tree on and off. Geeks. Then Duhdee showed him that they could ALSO turn on the lights in the front windows too. Monkey took one look and said, clear as day, “Would you look at that!” which was then followed by a series of “Yay!”s which we could mostly hear over our own laughter. This boy is just full of surprises.

We’re so lucky.

I am thankful…

…for parents who taught me that rewards come to those who work hard and sacrifice in the short-term.

…for in-laws who love and accept me unconditionally.

…for grandparents who have always made time for me even though I’ve not been very good about doing the same for them.

…for friends who have known me for years and still like me.

…for friends who are just getting to know me and still like me.

…for amazing neighbors who’ve made this corner of the big, bad city a home.

…for my husband who is my everything.

…for my son who brings me such joy every day.

…for each and every one of you reading this.

Your support has gotten me through some really awful moments and made sweeter moments that much sweeter…thank you.

I hope you all have an amazing Thanksgiving.

Sure, a school performance sounds just *perfect*…

When I was younger I hated school performances. I always felt a little sick to my stomach before any school concerts and I once passed out on stage during an performance of one of Aesop’s fables. It involved me wearing a hairy ape glove/mitten. I really just don’t know. All I do know is I was carried/dragged out of the assembly, up the stairs to the principal’s office and left laying on a cot until my mom showed up. It felt like a lifetime.

But, I hear you all saying, who cares? This is about Monkey, right? GET TO THE GOOD PART! And I am, geeze, I’m just saying I have more than a little sympathy for my Monkey and his dislike of performing.

Anyway, this morning was the Thanksgiving performance for the kindergarteners at Monkey’s school. The first I had heard of it was yesterday and I woke up in a cold sweat last night over it. Srsly. When we dropped Monkey off at school today we told the teacher we would be at the performance but we were going to try to hide so Monkey didn’t see us, it just makes him anxious. It took all my willpower not to tell her to let him skip it.

We’ve seen this type of performance in the past on a much smaller scale and it never goes very well. Monkey hates to be the center of attention and his reaction to praise is never what people expect…and clapping…fuggedaboutit. And this is what happens when he performs in front of a dozen parents in his classroom. This time they were performing in front of several dozen parents in the school auditorium. See why he should have just skipped it??

But, I bit my tongue and sat in the darkest part of the auditorium with Duhdee hoping he didn’t see us, that he didn’t scream when they had to force him into the room, that he didn’t cry and fall to the floor when he got to the front of this huge, scary space filled with strangers who all had cameras and cell phones and who were snap, snap, snapping away and moving around and talking and laughing and *sigh*.

Then the other classes came in. Every child was wearing a paper hat of some sort to correspond with their song or skit. The parents were nuts, clogging the aisles taking pictures and standing up and yelling at their kids to get their attention. Yeah. This is going to go soooo well. I had to force myself to stay in my seat and not run out to the lobby, where I could hear his class as they prepared to enter the auditorium, and tell his teacher to let him skip it.

His class entered last and it took me a while to find him in the group because I was looking for the screaming kid with amazing curls and no hat and there WASN’T one of those. There was, however, an adorable boy holding hands with his OT, wearing a feathered hat and looking around with BIG eyes. Huh. That one was mine alright. They all took their seats on stage with as little fuss as is possible when you’re dealing with kindergarteners and Monkey was doing fine. WTH?

The teacher took all the kids to a “pen” on stage and they recited a poem about 12 little turkeys. The first little turkey ran away. As soon as the words were out of her mouth Monkey broke away from the group and went tearing across the stage as fast as his legs could carry him. Uh oh. Oh, wait, that’s what he was supposed to do! He even got a few laughs because, really, he is that damn cute. Also, he looked scared…and his eyes get really, really big when he’s scared. He looked more like an owl than a turkey to be honest.

During the rest of the performance he sat nicely with his OT and cat called his teacher. He kept yelling “Miss. ___, c’mere!” Fortunately, in a room full of rowdy kindergarteners he didn’t stand out at all, lol. By the end of all the performances with all the singing and clapping and waiting he was ready to go home but he seemed to bounce back once the popsicles started flowing.

I’m glad I managed to ignore my “sympathy stage fright” in the end and let him do his thing with his buds. I wonder if I’ll remember this next time we have he has a performance?

It’s a DOVER!

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?

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

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

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.

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.