Month: November 2012

Meanest parents ever.

Meanest parents ever.

Melissa

I believe Eric and I may be in the running for the title of meanest parents ever. I know, I know, everyone thinks we bend to the will of the mighty C and, to a large extent, they’re right. We run a Caleb centric household, partly because it’s easier to fight as few battles as possible and partly because we just love to make that little Monkey grin. So we spoil indulge him a bit at times. Shut up.

A week ago something happened, I had a seemingly innocent conversation with a co-worker who has a child with significant special needs and, at one point, she brought up a topic and I swear laser beams shot from her eyes when she heard my response to her question. What could possibly result in that type of reaction? Homework. She asked me what type of homework Caleb does. My response was a very guilty, “None? Do they get homework in 2nd grade?” Oy vey. If it were possible to shoot laser beam eyes at myself, I would have.

It had truly, not once, ever crossed my mind that Caleb’s peers, the ones I’m SO determined that he be pushed to be like, might be doing something so advanced as homework. I’m pretty sure I didn’t have homework in 2nd grade beyond reading books I picked but it’s possible that I’m just not remembering it correctly. If my 1st grade teacher reads this she can correct my memory, I’m sure.

That evening I looked at Eric and asked him, “Do the other kids at school get homework?” I got the same deer-in-the-headlights look that I had given only a few hours earlier. It made me feel better to know it hadn’t crossed his mind either. “We need to ask. If they do, Caleb should.” I’m not sure he fully believed that, I know I sure wasn’t 100% sold either.

The more I thought about it, though, the more I realized that if the other kids are doing homework, Caleb should be too. We have high hopes for future treatments so we really need to be setting the stage now to be sure he has good habits down the road, right? Also, it felt a little like cheating to be getting a pass on this when all the other parents of typical children don’t. lolololololololol! Don’t worry…that quickly passed because, honestly? Yeah, those parents of typical kids totally deserve at least some added hardship. Still kidding!

Actually, Eric and I have been doing homework for years already. Every weekend we have sent in a quick blurb about what Caleb did over the weekend and sometimes we sent in pictures for special events. This morphed into weekly pictures this year because his teacher has started using them to help Caleb write stories in the Writing Workshop portion of his day. It’s time spent with typical peers so we are willing to do whatever we can to make sure he has the materials he needs. Even when it makes me have a mini-meltdown. (See “Way too much pressure!” Many thanks to our fellow FX Mom Jeanie for talking me off the ledge on that one!)

So, late last week Eric brought up the subject with Caleb’s teacher. After she got over her shock that she had parents requesting homework for their child she decided it was a great idea and that she’s thrilled. Yay! There’s 1 out of 4! We talked a bit about what his homework might look like and she gave it some thought over the weekend. Her primary concern is that she doesn’t want it to feel like work for any of us, she doesn’t want it to be a struggle. Yay! Now 3 out of 4 of us were on the same page!

Today, she emailed us again.

Hi Eric and Melissa,

I am sending home a homework folder today for C. Inside you will find a book, “At the Park,” 5 sight word flashcards, and coins/bills (fake money..we always use the pretend money first). I think if he practices reading the sight words to you two or three times each that would be great. The story is very short, so he can also read that 1 or 2 times. You don’t need to prompt him for any of these activities, as he should be able to read all of these words and can read this story with about 90% accuracy. If he misses any words in the story, we always help him sound them out and have him reread the whole sentence. The more practice he has with reading sight words and short stories, the more fluent a reader he will become.

As for math tasks this week, let’s just stick to him identifying coins and bills. At school he is able to tell us the name of each coin and bill. We are working on him telling us the value now (5 cents, 10 dollars, etc.). This is more difficult because he needs to memorize which coin has each value. The bills are easy, as it says right on it how much it is worth. The prompts that we use at school when working with money are: “What is it?” and “How much is it worth?” Receptively, C knows all the coins/bills, but now we are working on him expressively saying the names and values of each. The most important thing is that he is labeling the coins, using the words “cent(s)” and “dollars.” You can simply hold up a coin or bill and prompt him to tell you what it is and how much it is worth. Since he is still learning the values, he may need help, You can tell him what the value is and have him repeat it.

I think this homework will be for the whole week. He can practice all three of these things each night. I hope this all makes sense. Please let me know if you have any questions.

Also, Ms. (Inclusion Teacher) gave me a copy of what her students are doing for homework this week. It is just for your information.

Signed..

(Special Education Teacher)

Yes! Yes! Yes! Ohhhh…wait…really? Do we have to get a copy of what the typical students are doing?

I quickly e-mailed her back.

Hi Awesome Special Education Teacher Whom We Love,

Thank you for pulling this all together!

Can I be a total baby here and ask that the homework for the typical students not be included if it’s not necessary? We try very hard not to compare Caleb to his typical peers when it can be avoided. It’s really hard on us to see how far behind he is, I’d rather just focus on where he is at.

Please don’t take this as anything but me preferring ignorance when possible for my own emotions. I worry way too much about everything and C totally feeds off me!

Thanks again! I haven’t had homework in so long 😉

Melissa

I’m a little worried she’ll feel badly or defensive over that request but considering that the most important, 4th and ultimate decider/participant, Caleb, isn’t yet even aware of what kind of hell is about to be unleashed upon him…I need the least amount of mental disturbance going into this as I can manage.

Please, wish me luck. I suspect this won’t go so well when I tell him that instead of a snack and his (nearly) naked computer time he gets to sit down and do homework. Also, please no one tell him that this was all my brilliant idea…

Learning to listen.

Learning to listen.

Melissa

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.

Melissa

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

Melissa

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!