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?

We have the coolest teacher!

Monkey’s teacher is the bomb. She was the perfect person for this new pilot classroom! Not only does she have the required dual certifications, that was a given, but she has something else that’s not something you can be taught as readily…she is flexible. Of course she has her lesson plans and a schedule for how a day will go but she recognizes spontaneous learning opportunities and jumps on them eagerly. Very impressive in a teacher who’s leading her very first classroom, no?

This morning, Monkey wanted to bring a ball in the truck. I asked him if he wanted to show it to his best bud and he ignored me. That is generally as good as a “No,” so when we got to school I was surprised to see Monkey getting out of his seat clutching the ball. He told me “bounce” and said his friend’s name! OK!

I had to carry the ball into the classroom because the temptation to throw it during that transition would have been too much for him to resist. I wanted to encourage this social exchange but I did want to stop short of creating a circus. Like I said, I LIKE his teacher, lol.

We realized that his friend wasn’t yet there so I continued holding the ball while Monkey checked in to class. One of the other kids asked why I had a Buzz Lightyear ball and I explained that Buzz was Caleb’s favorite cartoon character. Any chance to teach them about my little guy is taken advantage of!

Just then, Monkey’s friend1 arrived! Monkey’s teacher, to whom I had already explained what was going on, was so excited by all of this that she decided to reward Monkey and his friend with some impromptu ball play in the small, fenced yard they have attached to the class! I asked the teacher if she wanted to keep the ball for the day and she was thrilled.

When we left they were going out the door together and I heard her telling the other kids they would ALL get a chance to play with Monkey because he is “such a good sharer.”

So, yeah, I think I sort of ended up creating that circus after all but, fortunately, his teacher was willing to embrace her inner Ring Master. I love that in a teacher!

OH! Another reason I love his teacher? Yesterday, at the PARENT TEACHER CONFERENCE, when Monkey was walking around with a sandwhich bag on his hand talking about picking up “poot,” she suggested we give him some fake poop for Christmas, LMAO. How could I not love this woman?

  1. I really need to give him a blog name! []

The PARENT TEACHER CONFERENCE.

You know how sometimes I let my excitement or, more frequently, my anxiety get away from me and I build up these totally innocuous occasions into SITUATIONS and then I come back here and just say, “Meh”? This is totally not one of those times!

This morning we had our first ever official PARENT TEACHER CONFERENCE! I did not cry and I did not hug the teacher, I was way too mature for that. Nope, not me. I simply GUSHED over how excited I was and how I couldn’t believe we got to attend a PARENT TEACHER CONFERENCE and how cool it was that there was no attendance sheet! I’m such a smooth operator. Everyone was laughing at me but I so don’t care!

The teacher waited me out (she was just sitting and nodding and smiling at me with her BIG eyes on) have I ever mentioned how much I love her? Not nearly as much as my little Monkey but I think she’s just super.  Anyway…once my verbal barrage slowed to little squeals of excitement she shared her thoughts on Monkey and how he’s doing. Do you want to know how he’s doing? OF COURSE YOU DO!1

He’s doing awesome! They can’t believe what big changes they’ve seen in him since school started. He’s settled into the routine, he knows all the kids names and at circle time he’s the one whispering the answer behind his hand to the kid who can’t remember, lol. At lunch time, he knows everyone’s lunch boxes and distributes them appropriately. He was the first kid to master standing in a line (this is one of those skills he demonstrates at school and not anywhere else that I would LOVE to see him generalize!)

He has an infectious laugh and the kids are drawn to him. When he starts laughing everyone stops to see what he’s laughing at because it’s going to be good.He’s so sweet and gentle that the typical kids in the classroom have no reservations about interactingwith him. Some of the other kids with disabilities in the class are not quite so calm and collected so there’s a bit of anxiety and uncertainty over engaging in play with them. The staff is working on this and are very aware so I have a lot of hope that allthe kids will be more fully integrated and accepted by the end of the year but it really, really, really made my heart soar to hear that the other kids like Monkey and want to be around him and engage him on their own. Yay!

She had two pieces of work to show his current level of functioning. One involved tearing paper, gluing it to a picture and then coloring the rest of the picture and the other involved matching pre-cut shapes with shapes printed on the page and gluing them in the right spot. Would you be shocked to hear that Monkey doesn’t excel at either of these activities? He did fine, both were done appropriately but he needed a LOT of teacher support. Gluing and coloring and matching…sure he is physically capable of doing those things so theoretically he should be capable of doing those things on his own but here’s the question…why? What is the point? Monkey, like most boys with fragile x, need activities to have a meaning.

We tried to convey this by telling her that Monkey prefers real-life activities…cooking, cleaning, fixing things. Monkey himself was demonstrating his love of real life situations by walking around the classroom with a small baggie of “poot.” He was talking about walking his dogs and he was pretending to pick up dog poop using little (clean!) baggies he found in the truck that we use for just that purpose. I think I need to find a way to more clearly convey this message to her. I don’t care if he can glue blue triangles onto a piece of paper. He’s done it dozens of times, we know he can…let’s move along. Let’s find richer activities to build skills on.

So, to sum up, Monkey rocks. He’s doing great, learning new stuff and making friends and now I’ll shut up about the PARENT TEACHER CONFERENCE. Mebbe. Hee.

  1. Wheee, I may still be on a bit of an adreneline rush! []

GUESS WHAT! GUESS WHAT! GUESS WHAT!

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!

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 now1 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…

  1. I do sometimes still carry him down the stairs as a special treat *shh* []

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