In which I admit defeat and, yet, still win.

When we were at the conference we purchased an indoor swing. Monkey loooooves to swing so we’d been considering one for a while. One look at the “special conference pricing” and we were sold. Over a month and many, many frustrating phone calls later ((and finally a fraud report to our bank)) and we were the proud owners of this:

Not terribly exciting on it’s own but when you add the strap swing, the trapeze bar AND the net swing. Oh, baby! Unfortunately, Monkey didn’t see anything terribly exciting about any of it, it seemed. I really and truly thought he’d love that net swing. I sure do! It gives great all around pressure on your body while you swing, it was perfect!

We put it up and, except for the times I used it, it hung forlorn and neglected in our doorway. This was what I was fearing would happen, to be honest. It never fails that when we find something we think Monkey will loooooove and convince ourselves it’s a good way to spend our hard earned pennies; he hates it…or at least is entirely indifferent to it. It’s frustrating.

So, I left that net swing up for a long time. I used it and was able to get Monkey to use it for a few seconds at a time while sitting in my lap but he wouldn’t use it on his own. The final straw came yesterday when he played with it briefly without actually getting in it and knocked himself down. He was fine but he was shaken up and I knew he wasn’t going to even look at it for a while. FINE. I put the net swing in the bag and, on a whim, hung the strap swing in it’s place. Monkey was not a fan at first. He  was used to seeing the net swing hanging there by this time and wanted me to fix it. I told him no, the strap swing is staying put for a while.

Not 5 minutes later, he was in that swing…swinging. And just like that this overpriced piece of metal, that I was beginning to resent, has become a source of total joy. If I ever manage to get him to use it while wearing something other than a pair of Buzz Lightyear underwear I’ll even let you see.

Day 5

“No plan of battle ever survives contact with the enemy.” Heinz Guderian

It’s day 5 and I think we’ve got it.  Starting a new routine, even one we plan for, doesn’t always go perfectly right from the start but I’m hopeful we’ve figured it out for this year.

He walked into class easily.  He’s still keeping a close eye on his teachers and he’s a little reluctant to run through his routine if one of them is standing too close or watching him.  We did use positive reinforcements ((M&M’s, naturally.)) to help him work through the routine and when he balked he was not rewarded ((Mommy ate his M&M when he refused to move his name (written on an apple) onto the check in board (a tree).  Mommy even got praised by Duhdee for it, lol.)) so hopefully he won’t do that again tomorrow ((Though, I certainly won’t say no to M&Ms if he does!)).

A new local parent group!

If you’re in the eastern Massachusetts area I’d love to invite you to check out a brand new resource group for families affected by fragile X syndrome!  There is a short form at the bottom of the page where you can sign up to receive updates from the group and if you want to help get the group up and running you can make that known as well!

Let’s talk about school.

What do we know two days into the year?

  1. Monkey is going to really like his teacher, he already likes her well enough but given time he is going to love her.  I can already see it in how he reacts to her.  Yay!
  2. Monkey’s teacher “gets” him already and she is working so hard and actually listening to us when we talk about ways to improve his transitions.
  3. Monkey enjoys school, he’s having fun during the day, he’s working hard.
  4. The morning transition, despite the preparation is a potential disaster.  Transitions are just hard in general and this is a really big one.  He is not walking into class easily.  It’s taking a lot of cajoling and deep pressure. 

What do we need need to work really hard on again?

  1. The morning transition.  I realized this AM that there is just too much talking and there are too many people involved. 

Yesterday, Duhdee asked the teacher when during that process she wanted to be involved because yesterday morning she jumped in too soon.  We’ve got that established.  Now Duhdee and I need to work out between us what we’re going to say and do at each step.  I want both of us to be able to do this but it will mean we both have to be following the same script (an actual, literal script I will write.)

I think the two biggest keys are getting there early (we were on time today and the check-in area was crowded) and M&Ms.  Fortunately, both of those things are within our control, lol.

Oh, and guess who gets to start asking about an integrated first grade classroom already?  The only way to have one for next fall is to get it in the budget.  All budget items need to be in front of the administration by Christmas break because they begin their budget process in January.  Awesome.

Hugging it out.

Something remarkable happened yesterday.  Monkey and I went grocery shopping and Monkey started having a really tough time managing all the stimuli.  He knew it and he even tried to fix it!  Anyone who’s been reading this blog for a while is thinking “Uh oh!” because Monkey does not have a history of solving his hyperarousal issues “appropriately,” now does he?  He is getting it though and I’m so excited. 

Grocery shopping is no simple matter in our house.  I remember, as a kid, we went grocery shopping once a week and we went to one supermarket.  Rarely did we make other stops for specialty items.  Duhdee is all about making multiple stops for specialty items.  Since it’s my routine now, I am simplifying it a bit but we still needed to make 2 stops.  We can do that, right?

The first stop was one we do maybe once a month.  Since we go so rarely the list is often long and the items are located all over the store.  I’m still learning my way around this store and my list was not in any particular order.  By the time we had finished, Monkey was ready to go home but we couldn’t.  The other store is the weekly store, it’s where we get milk, bread, juice, etc.  We couldn’t skip it.  Deep breath, encouraging words and off we went.

When we arrived at the second store Monkey began letting me know we were in for a bit of a time.  He was flapping his hands like crazy, he was hopping in place a bit to get that extra input through his feet.  I initially thought, “If we just hurry and get home as fast as possible, we’ll be fine.”  Wait, did you just cyber-slap me?  Why not?  You shoulda :-)! 

I took one more look at my little boy as he pressed his fists into his solar plexus.  He was starting to fall apart and he knew it.  I’ve never seen him give himself input like this when we’re out and about!  I quickly pulled my carriage to the side of the aisle and asked him if he needed a hug.  He said he did.

I knelt there on the floor hugging him tightly.  He kept his arms between us at first using them for extra pressure as I squeezed him.  He had his chin pressed firmly into my left shoulder gathering even more input.  Gradually his body stilled and then his arms went around my neck and he squeezed back.  We stayed there on the floor with dozens of people walking around us. 

Some people looked at me and smiled when we made eye contact.  A few took a second look when they got around to where they could see Monkey’s face.  I’m sure they assumed he was crying but he wasn’t.  He was just hugging his Money.  No one said a word about the fact that I was blocking part of the aisle, they stepped around and grabbed what the needed and then moved on.  I was amazed.  It let me keep my calm focus and pass it on to Monkey.  I wish I could have told people how very awesome they were being but my attention was needed elsewhere.

Since I couldn’t take the time yesterday, let me do it today.  THANK YOU to everyone who gave me and my baby the space yesterday to hug it out.  You have no idea how amazing it was for me to be able to kneel on that floor and give him what he needed without anyone judging either of us for it.  A simple smile when you see a parent or child struggling and the compassion to just step around them even if they’re partially blocking your access to those yummy, yummy Joe’s O’s is an amazing gift and so simple to do.

Now, to finally get to the most amazing part, when he was done, Monkey told me, “Ready.”  And we finished our shopping trip.   We even tossed in a 3rd non-essential stop.  Who would have ever thought it?

I have a kindergartener!

Yesterday was Monkey’s very first day of kindergarten.  In some ways this was not a big deal because, really?  We’ve put our precious boy into the hands of total strangers twice before ((The third year of pre-school he had the same teacher and therapists as his second year which was nice.)).  I’m an old pro at sending my child off into a feared nest of vipers only to learn that my fears were out-sized and overwrought.  I’m an old pro at overwrought.

In other ways this was very, very new and scary.  I doubt I’ll ever get over that ache in my heart and that sick feeling in the pit of my stomach when I take his little hand from mine and press it into his teacher’s hand.  I doubt I’ll ever be able to turn and walk away from him, leaving him uncertain, worried and in the care of people I haven’t yet learned to trust, without my throat tightening and my eyes burning.  I doubt I will ever be able to get in my truck and drive away feeling anything less than dread.

Fortunately, yesterday, I had a fantastic distraction in the form of a friend and her mom.  We toured the city, talked and laughed which spared me a day of hand-wringing and aborted calls to the school to check on him.  A while after lunch I finally got the call from Duhdee that Monkey had had an awesome day.  He even brought home a couple tentative art projects which showed he wasn’t completely shut down.  We have a weekend to recoup now and we’ll get started on all the real work on Monday.  We can do this.

Who am I kidding?  HE can do this.  I just need to stand next to him and keep knocking down the roadblocks so he can.

A new day has dawned…

and I witnessed it.  Yip-frickin-ee.

This has become the weekend of no sleep, this isn’t how it’s supposed to work.  We finally have an Rx to counter the night wakings, it’s supposed to be better!  *sigh*  Monkey’s internal sleep-clock hasn’t gotten the memo though.  Even with the new Rx he’s still waking around 3 in the morning and staying awake for at least an hour.  You know what happens when I get woken up at 3 AM?  I stay awake!  Ugh!

So, here I am, 3 hours after the initial wake up, ready for bed.  Monkey should be up, bright-eyed and ready for another day of excitement in … oh, let’s say 20 minutes … or roughly the exact moment I doze off again…

Last night, at dinner.

Duhdee cooked us an amazing dinner last night!  We had fresh halibut, corn and oven-roasted potatoes.  It may surprise people who know me to hear I ate that.  I was, for a long time, under the impression that I didn’t like fish ((Except freshly caught Brook Trout)) but it turns out that I do.  It’s a strange thing to learn in your mid ((Wah!!!))-30’s maybe but I’m glad I finally figured it out. 

As I do most nights, I put Monkey’s plate on the table first and seated him.  Otherwise, we spend way too much time swatting at his hands as he tries to grab the food off his plate on the counter.  Which, eh, really?  Would be fine with me in general if he didn’t then race around the house with his greasy hands touching every remotely clean surface.

So, I seated Monkey, placed his plate and fork in front of him and as I turned to walk away I heard him say, “Money ((Yes, he’s still calling me Money!)), sally?”

“Sally” is Monkey-speak for “salad ((Yes, it is the cutest thing ever, IMO, and you are free to think so too)).”  I told him we were not having salad and walked away.

When I got to the kitchen, Duhdee was laughing.  “Do you know why he’s asking for salad?  That’s what we had last time we ate fish prepared this way ((Pan-seared with a white wine reduction that rocks Monkey’s WORLD))!”  And the last time we ate fish prepared this way?

TWO WEEKS ago.  Me, I can’t remember what I had for breakfast ((OK, that’s not true…I can remember what I had for breakfast because I eat the same thing for breakfast nearly every day! Two hard boiled eggs, if you’re curious.))!