Learning to listen.

Learning to listen.

Yesterday we decided to go bowling. Normally we never would have even thought about this, it’s loud, the bowling alleys (at least around here) seem to be dark and they smell weird…greasy food, sanitizer and a whiff of old cigarette smoke. None of these things are good ideas for Monkey.

Caleb had seen The Man in the Yellow Hat go bowling on Curious George recently and he began asking about it. First we went to the Wii bowling game, he likes it but it wasn’t what he wanted. Then I tried setting up a bowling activity at home using water bottles and a basketball, meh, no. Finally I told Eric we should just go for real. Neither of us had high expectations. Monkey had tried bowling a couple times before almost 4 years ago and it was exhausting (You can read about that trip here: I forgot to mention the bowling) but we aren’t quitters here at Chez Monkey!

After we filled our bellies, we set off with a Monkey who was at least a little excited about the trip because it was his idea. He ran into the bowling alley, shook hands with the guy behind the desk and waited while we got our shoes. He sat patiently while I fiddled with his shoes because they needed to be almost completely unlaced and then re-laced to get them on his chunky Monkey feet. He sat a bit less patiently as Eric struggled to get the computer thingy set up but he managed.

We set it up so C would go first. Mommy took the first go at showing Monkey how to bowl. After one pitched ball he did better but required a lot of coaching. By the time he finished his first two strings he was not nearly as excited as he had been. *sigh* This was looking like a repeat of the last time.

When his second turn came, Eric took a shot at teaching Monkey how to bowl. Still it took a lot of coaching and by the time those two strings were done I was pretty sure Monkey was too. Bugger.

He was starting to whine. He was getting hyperaroused and his behavior told me very clearly that this was not working. I wish he had the words to tell me that it was too loud or too stinky or too anything. I wish I knew what he needed help with. All I could do was offer deep pressure between turns.

When his third turn came, Monkey was very reluctant to even try. I looked at Eric and opened my mouth. I thought I was going to say, “Let’s just go.” but instead I said, “Fewer words.” Eric nodded. This is something we’ve learned from Tracey & Mouse, when your child is hyperaroused, talk less. Don’t bargain. You cannot bribe your way through hyperarousal. This has been one of the hardest lessons we’ve ever learned. Who doesn’t want to be able to say, “If you do this last thing I’ll give you a cookie!” and have it work??

After that first string of his third turn I thought of another lesson we’ve learned over the years, he needs to know when he will be done. As Eric helped him with the first ball, I grabbed two more. When Monkey turned around I showed him both. “This one and then this one. Then it’s Daddy’s turn.”

He grabbed one of the balls and without any coaxing or coaching, bowled. I grabbed another ball and showed him both. “This one and then you can hold this one while Daddy and Mommy bowl.” He took the last of the three balls for that string, bowled again without coaxing or coaching. Then he took the last one in my hands and went to sit down.

Eureka!

We did the last two strings just the same, we barely had to do any talking at all and Caleb stopped whining and just bowled!

When we finished the last string of the game Eric looked at me and signed “Go?” I really wanted to stay. Caleb was doing so well and we were having fun. “Ask him.”

“Go home,” was the response. It wasn’t the one I wanted, I wanted to stay, but he had just about hit his limit and I know through experience that we need to listen to him at those times. I’ve fought it before, remember “So, it’s not all sunshine, roses and unicorns flying out my butt“?

So, we told him what a great job he had done, we changed our shoes and we went home. Ending on a high note is just as important as enjoying the activity and I want him to walk away willing to try again some other day.

Like maybe next Sunday morning during the discounted hours 🙂

 

The boys.

The boys.

We hear about “the Boys” quite frequently. “Well done, boys!” “High five, boys!” are common phrases around here. “The Boys” are, of course, The Penguins of Madagascar. Caleb thinks they are just the coolest. Other than his unfortunate habit of imitating Rico as he regurgitates whatever tools might be needed, like bombs or a flamethrower *ahem* there isn’t any reason to discourage his love of them. Heck, I’ve picked up a few new swear words too, “Bouillabaisse!” and “Smoked salmon!” are my current favorites.

Anyway, Caleb will frequently find 4 identical objects and begin pretending they are “the Boys.” Today he has pretended that marbles and water bottles are the Boys and he’s been lining them up in various locations. Mommy just snagged the bottles and dressed them up a bit.

I think these Boys will be hanging around a while. After hearing them hit the floor earlier,  I probably should have used empty ones. Bouillabaisse!

Study update – Week 1

Study update – Week 1

We’ve started on the Week 2 pack of the study drug so I thought it would be a good time for an update.

And the update is…

We’ve seen nothing. Caleb was still too anxious and shy to participate in Halloween in any way. His social anxiety is still just the same as always. We haven’t seen any changes in language or behavior either. There have been no reports from school that he’s suddenly doing X, Y and/or Z.

What does that mean? Nothing! We may be on the placebo, we may be on a very low dose or we may be on the full strength drug and it’s not going to work for him. We I am not stressing out about this or worrying over it. We went into this assuming he would get the placebo. We are going to reserve all judgement until we are on the trial extension in January.

I wish I had better news but I’m glad I don’t have worse news like…he’s become a total aggressive nightmare and we are dropping out. Which would really suck!

On the positive side, Caleb is taking the pills 3x a day (at least 4 hours apart) and he’s taking them without anything but a sip of juice to eliminate the flavor after it melts in his mouth. He’s taking them, to quote Eric, “Like a big boy.”

Speaking of a “big” boy…I have something to show you…

Do you know what that is? Do you???

That is my baby’s feet ((Encased in Crocs, I KNOW but he loves them and whatever, there is never an argument over shoes when he wears those. So, fashionists leave me be!)) very nearly touching the FLOOR in our truck. The FLOOR! And, to make it worse, he’s in a booster seat…if he wasn’t his feet would be ON THE FLOOR. *sob* I hate these little reminders that my baby is growing up so fast!








It’s time to make Eric cry again.

It’s time to make Eric cry again.

It’s getting a little heavy here. There are a lot of strong emotions and one of my most favorite coping mechanisms, when I start getting dragged down, is PINTEREST! The problem is when I start spending time on PINTEREST, I start getting ideas.

If you recall the nightmare that was Caleb’s room redesign then you know, you know, why me getting ideas is bad. But this time it will be different! This time we really are only talking 2 gallons of paint. Ahem. You can stop laughing now!

All I really need to do is narrow down my ideas a bit…

OK, maybe a lot…but, in my defense, I do have two different sets of stairs to do…

Yeah, he’s so going to cry…but I have to say, in the end, my ideas do turn out stunningly so it will be totally worth it. At least it was last time, right?

The Perfect Storm.

No, this isn’t about Sandy. It’s also not about that movie I never did get around to seeing. This is about grief.

A very long time ago, I had another blog. A secret blog. *gasp* I know! Another amazing, inspiring blog and I have kept it from the world? Shocking and selfish. Or, maybe, it was not either of those things. Maybe it was just stuff I wanted to share with my parents and in-laws. The world will never know.

Yesterday I was discussing grief with friends, specifically how we grieve as parents of children with fragile X. How it’s a vicious cycle that keeps a grip on us from the day we are diagnosed until…well, I’m not really sure when. All I know is that I was knocked off my feet the day I found out that Caleb had fragile X and, even though I keep standing back up, it still has the power to send me to the ground over and over again. Just because it’s easier for me to stand back up doesn’t mean that the pain is any less. It still hurts.

Separately from that discussion I decided I wanted to find some pictures of Caleb’s hair, he has spectacular hair. I love every single curl on that head and it makes my heart happy to look at him. So I pulled up that old blog to find pictures of him as a baby and I found something else. I found me. I found the me I was before fragile X. I found the mom I was, the one I should be. The one I would be if I’d never heard of fragile X syndrome. If the right X had passed between us.

I wrote this 14 days before Caleb arrived.

Waiting for Caleb

Eric and I were delighted to announce to all of our friends and family in November 2003 that we were expecting our first child. We waited until I was nearly 12 weeks pregnant before we made the announcement. I had taken a picture of my positive pregnancy test for the little one’s baby book. When the time came to tell my Mom and Dad we simply handed a copy of the picture to Mom. Mom seemed surprised but hid it very well, she then handed the picture to Dad. He couldn’t quite make out the writing and finally Mom had to tell him what he was looking at. They were both very happy for us, as we knew they would be.

When I was 18 weeks along we had a routine ultrasound. At first the Dr. had a little trouble getting the baby to cooperate, he appeared to be as camera shy as I am, lol. Eventually, after some prodding, the Dr. was able to get a few good profile shots. After the Dr. took a few measurements of the baby he decided to have a look around. He asked if we wanted to know the sex of the baby, obviously, we said yes. He zoomed way in on the baby leaving no doubt that he was in fact a boy, lol.

The ultrasound was an amazing, awe inspiring experience. Seeing our little guy’s hands and feet and watching him move brought tears to our eyes. But true to form we found some humor in the situation as well. I commented on how cute he is and Eric’s responded, “Yep, he’s taking after me already.”

He’s so modest. By the end of the ultrasound Bullet was pretty upset about the whole experience and he brought his little fists up by his face so he looked like a little boxer. I made the obvious observation, “Awwww, look, he’s pissed off! He takes after me too!”

We both enjoyed the pregnancy so much, the only reason we won’t be sorry it ended is because we’ll have a perfect, little boy to love and spoil.

It makes me so unbearably sad to think about her…to think about that person who expected the whole world to sparkle simply because it always had before.

There are some positives, though, starting with this one…

A really, really, ridiculously cute positive.

Nothing to see here.

I used up my very last brain cell yesterday coming up with a plan for C’s weekend story to share. Hurricane cleanup and preparation, fun!

Today we’re hanging out inside where it’s dry, listening to the wind whipping through the trees outside while we wait for Hurricane Sandy to arrive. Caleb always finds ways to amuse himself, we started with tickles, then TV, then lunch, then computer, then marbles and now a little more computer.

What is a Money to do when her little man is becoming so self-sufficient? How about look through lots of old pictures looking for photos of the little man’s epic curls? OK! I’m easily amused, clearly, but come on…how can anyone resist this?