Author: Melissa

Study update – Week 3

Study update – Week 3

Melissa

If you want to know how Week 1 and Week 2 went, check out those links.

I wish I had something amazing to say about our study experience but so far…we are just not seeing any major changes here. As much as I tried to prepare myself for the possibility of getting the placebo, I was really, really, really hoping for something else. As much as I am reminding myself that we very possibly might be on the placebo a new fear is creeping in…

What if he’s getting the full dose, and it doesn’t work for him?

Of all the possibilities that I ran through in my head, I knew that this was one of them. But knowing it and knowing it are very different once you’ve left the land of “what if” and are standing smack dab in the middle of “what is.”

Not all of the boys on the study have improved on this drug. We knew that from the stories people had shared and we knew it from the researchers and FX experts we’ve seen. This drug is doing amazing things for some of the kids participating on the trial but no one ever, ever, ever said this would be the cure…that this would fix it.

As a parent, I want nothing more than for someone “in the know” to give me some guarantees but they can’t. In all likelihood, this will help some but not all. In all likelihood, we’re still looking at a combination of drugs to fix what our one little broken gene has done. It’s supremely frustrating.

I keep reminding myself to be patient, that we are less than 2 months away from knowing for sure what the outcome will be on this particular drug. That whispering voice is becoming more and more distracting though. I find myself gazing out the window lost in thought trying to remember what it was like before. I find myself watching Monkey’s every move trying to decide if he’s doing more or less of that particular behavior. It’s enough to make a Mama crazy, and this Mama really didn’t need any help in that department!

51 more days. We’ve got this.

Habit forming (Part 2)

Habit forming (Part 2)

Melissa

Remember this post, Habit forming, from last month where I was kicking myself for giving in to Monkey and letting him buy Doritos from the vending machine at work? I have an update.

As expected, he whined and moaned and even cried over my refusal to let him buy ‘Ritos every day. “Wanna come?” became the standard greeting for me each night.

He does this thing where he asks US the question he wants us to ask HIM so that when we repeat it he can say “OK!” and we then realize we’ve been totally outmaneuvered. It’s very clever and I half want to high five him and half want to high five myself…in the face.

ANYWAY.  Every night it became “Wanna come? ‘Ritos? 4 of ’em ((The number of quarters he needs to buy a bag, he is a very smart little punk!))? Want some please. Hongry, Money, hongry?” If we ignored it, tears. If we said no, tears. If we said when we get home you can have a snack, tears. It was such a pleasant way to end a day at work!

He always has Cheerios in the car but they have, after 8 years or so, lost their appeal for him so he never accepts that as a compromise. There are other snack foods, that don’t come out of vending machines, that he will accept though.

So I hatched a plan. I began saving the Trader Joe’s Baked Cheese Crunchies ((TJ version of Cheetos, we love them!)) that Eric was packing in my lunches ((Awww! I know.)). When I got in the truck, and he started his long list of questions and complaints, I would hand him the “cheetahs” and just tell him “I don’t have any Doritos.” That was it, nothing else.

And he totally went with it! It’s worked so well that Eric has been packing an extra little bag of something he’ll like in with my lunch so that I can eat mine and still have a snack for him ((Like I said, Awww!))!

We still have a minute or so, between when Eric stops the truck and I get in, where he’s primed for those Doritos but slowly, oh so slowly, we’re winning this one. At the very least, the tears have stopped which is really 100 times better. I totally prefer smiley, laughing Monkey to tearful, hongry Monkey!

Current hot snack item? Goldfish! The main reason for the Goldfish is, I’m much less likely to steal these during the day. Oops!

This is why we are doing it.

This is why we are doing it.

Melissa

I am, you may have noticed, an upbeat kind of person. I’m totally in love with my son and want everyone to love him just as much. That absolutely influences how I view, and consequently how I write about, our lives.

I try to share the good, the bad and the ugly…I try to go for balance but I acknowledge that the slant is more toward the good. Mostly because my life is slanted towards the good and partly because I’m just that damned determined to make it good.

So. It comes as a pretty rude wake up call when I find myself sitting in my office chair with an aching back. A back that is aching as a result of a very public wrestling match with my 71 lb, 4 foot something or other, 8 year old. He’s good, he’s so, so good and yet I needed him to do something last night that was way, way, way outside his comfort zone.

The more flustered I got, the worse the situation got…remember, I am still learning to listen too and sometimes I suck at it. Finally, I looked at my flushed faced, teary eyed cherub and glared at him. “TIME OUT. SIT.” He sank to the floor on his knees and it was over. He looked at me several times, with those big, big eyes that I love so much, and I just shook my head. Once he had regained some composure I gave him two options. He could stay in time out until Daddy was done or he could go into the voting booth with me. He chose the booth, we finished voting and he helped put my ballot into the voting machine-thingy and we went home.

It’s times like that when it is so very clear how much anxiety has a grip on him. I am in awe of the inner strength of this child who on a daily basis not only fights this battle but most often wins.

Today, we’re all better. He’s happy at school and though my back hurts it’s serving as a reminder that there is a beast who lives inside my son and makes his days so terribly hard. It’s serving as a reminder of why we are so focused on better treatments and ultimately a cure.

Please, please, please let us be on the placebo because such a sweet boy shouldn’t have to keep fighting this hard.

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…