This one shouldn’t hurt anyone’s head.

I have another grumpy-ass post eating at my brain but I am going to stick to fluff today. I need a break from me…

Monkey has been working really hard at mastering sight words at school. His teacher sends home copies of the books he is able to read so we can read them at home too. She also sends us a note detailing the ways in which he attempts to manipulate her to get out of doing the work and how she redirects him so we can be consistent in our approach at home. Ahem.

Clearly, he’s not reading War and Peace. The sight word books generally have 1 sentence per page and maybe 8 pages total. The sentences are also generally repetitive. “I see a cat.” “I see a dog.” “I see Mommy’s attention wandering.” That sort of thing.

Given the repetitive nature of the sentences and the fact that he’s read the book several times before we ever see it, it’s hard to know how much of it is his memorizing the story vs. how much he has actually learned to recognize the words.

Last night two cool things happened during forced story time:

  1. Caleb excitedly allowed me to read a story to him! Usually he resists and I end up having to tell him, “Sit down, we are reading.” or “No, I won’t get out! We are reading.”
  2. I was reading him a book that he is not using to learn his sight words from (Green Eggs and Ham) and I would pause during the story when I came to one of the sight words he has supposedly mastered to see if he actually recognized them in a different context and he did GREAT! I was so proud of him.

After we finished, he wanted to look at the book some more by himself. Since it was bedtime I hesitated, if we stuck to the routine I needed to say “Good night, sweet dreams, see you in the morning!” and shut off the light. It isn’t a good idea to break up a routine in general but the bedtime routine especially is carved deeply in stone, the result of many, many1 nights of misery. I stood, hesitating, but Monkey was already absorbed in the book again. So, against my better judgement, I turned on his bedside lamp and told him, “OK, 5 minutes.” and left the room. GAH!

I went and stood next to Duhdee looking a little wild-eyed. “I told him he could read for 5 more minutes.” And then I stood there for a minute before it sunk in and then I grinned because DUDE! My kid had just ASKED to keep the book. My kid was reading QUIETLY in his bed!

When I went back in 5 minutes later he handed the book to me without complaint and told me “Off” while looking at his lamp. I told him “Good night, sweet dreams, see you in the morning!” and just as I closed the door I heard him say “in morning, money.” 😀

  1. many, many, many, many, many, many, many, many, many, many, many, many, many, many []

Does Illness Define a Child?

I just read this article on the Huffington Post and wanted to share it. I think this is one of the reasons I have such a love/hate relationship with fragile x:

If you could somehow erase the condition, would you be left with the same child? And if you could avoid having a child with that condition, would you? Should everyone? Would there be something lost to the world if — many would use the word “when” — we can screen many in advance and reverse others after birth?

Read the entire article: Does Illness Define A Child?

I think this is particularly hard to answer given how many similarities our children share…how many of the “characteristics” of fragile x are the things we love in our kids…their humor, their often (but not always!) sweet temperaments, their ability to surprise us over and over, etc.

Would Monkey be Monkey without fragile X? If I could free him from some of the harder parts would I want to “cure” him entirely, potentially at the risk of losing parts of his personality? I don’t seem to have an answer that doesn’t come with a “but.”

What do you think? (All opinions and experiences are welcome, anonymous comments are enabled if you don’t feel safe sharing.)

I confuse myself.

Sometimes I think my depression diagnosis is just flat wrong. I think a lot of people might think that because I’m the queen of the Public Face. I am good at hiding the fact that often I can’t say what I need to, I harbor unshareable thoughts and put out a shiny face because that’s how I cope. It’s how I keep taking step after step after fucking step.

I’ll tell you a secret though…I’m the mom of a beautiful boy, a boy I love more than anything…more than anyone…and sometimes I would give anything to be able to go back and do something, anything, to make it the way it was supposed to be.

Can I tell you another secret? Tomorrow, or perhaps even in an hour, I will want to slap myself for even thinking that because this is the way it was supposed to be. He is the child he was meant to be. I have the life, the friends, the husband, the child that I was meant to have and I love them all…I can’t imagine my life without any of them.

So, when you read here and get confused by my near constant cheerful posts and my random black-hearted posts, know this…they’re all true. I am exactly as happy and as pissed off as it seems at any given moment. Now, take a second to consider that and think about what it’s like in my head.

That should cheer you right the hell up 😉

 

Our little chatterbox.

This past Saturday Duhdee, Monkey and I went to dinner with some new friends. The little girl, N, has Down’s Syndrome and is in the general education class that Monkey goes to for inclusion.

We met N’s mom over the summer, they just moved to the district and N was at the same school as Monkey for the summer session. She stopped us to talk about what we’ve been asking for and receiving for Monkey from the district. This was right in the middle of our OMFGWDHAFIEP1 period which probably made us poor candidates for that conversation but she didn’t back away from us slowly and run! Which immediately makes her our kind of people.

I was a little anxious2 but without any reason3. Monkey briefly hesitated when we got to the front door but after less than a minute he walked into their house, took off his shoes and immediately went upstairs with the kids. **Blink**Blink** For the rest of the evening the kids would periodically run upstairs4 to find a toy and then bring it back down to show everyone.

When Monkey wasn’t completely making himself at home with the kids, he was sitting at the counter in their kitchen giving cooking instructions to N’s Mom and Dad. He was absolutely hysterical and they had a great sense of humor about it. They totally understand that when you wait over 4 years to talk, you have an awful lot of things to catch up on 😉

Once dinner was ready the kids sat on stools at the counter and ate while the grown ups ate nearby at the table. Monkey ate a little of everything and asked for more rice. I was so proud of him for how independent and how polite he was! New place, new people and he acted like he owned the place.

As if having a lovely dinner with great new friends wasn’t enough, N’s mom shared a reading program they are using with N and it looks like it would be *great* for kids with fragile x too. And it’s FREE for downloading. Who doesn’t love free?

Check out See and Learn.

  1. OMFG We Don’t Have A Fucking IEP []
  2. Right? I should search the blog for that phrase, I am guessing it is the most used phrase here. []
  3. Another common theme, I wish I could remember this when I am so anxious. []
  4. Monkey insisted that if one of them went they ALL went, including N’s older brother. []

I love a new blog!

So, one of my new fragile x mom friends (And I’m only using this distinction once to explain the connection. In the future she shall just be referred to as my friend or my friend who says f*ck a lot1 or maybe even just Kathleen if I’m feeling nutty) recently confessed that she’s been writing a blog!

I will overlook her failure to confess immediately upon meeting me because it is hella weird to bring up your blog in conversation, “Hi, mah name is Umma. I have a blog! Will you be my friend?”

As much as I’d LOVE to say my life is the only true example of how one lives with fragile x2 it’s important to remember that I didn’t just spring up happy and well medicated overnight. I didn’t even blog when we were newly diagnosed because I could not string together a coherent thought for TWO YEARS. Then it took me TWO MORE YEARS to get to anything close to where I am today.

It is so important for newly diagnosed parents to be able to find others who are walking the path with them. I’m sure many of my posts make newly diagnosed parents want to dig my eyes out. I would have HATED me back then…BLACK RAGING HATRED…not the cute little x-| kind.  So, may I introduce my friend who says fuck a lot?

 

 

  1. WITHOUT THE * PEEPS, SHE IS HARDCORE! []
  2. HA HA! Can you even imagine?? We would have a whoooole lotta people on anti-depressants if that were the case. []

13th International Fragile X Conference in Miami, FL!

The National Fragile X Foundation has released details about the upcoming International Conference. It will officially begin at 2pm on July 25, 2012 and last through July 29, 2012. Last year a lot of people left Sunday morning and missed the final Q&A which is a shame, it’s not often that you get a chance to quiz some of the leading practitioners in the Fragile X world on issues you’re having at home!

The conference hotel rates are good for 4 days before the conference and a day after, I would suggest that you take advantage of that if you want to see Miami…the conference is jam packed so there won’t be a ton of downtime for playing tourist unless of course you’ll be skipping the informal gatherings after dinner with all the parents who party.

Once it gets closer I’ll put up some tips for first timers but I have one for now…I know the temptation to bring your kids is strong, it’s FLORIDA for pity’s sake. I think it’s a great opportunity for slightly older kids but if your kids are young keep in mind that the conference sessions start early, we were downstairs by 7 each morning, and run pretty much non-stop until late afternoon. There are breaks for lunch but there are also often lunch gatherings as well.

It is going to be WAY busier than you can even begin to imagine. It will be “you’ll-want-to-be-in-4-different-places-all-at-the-same-time” busy and once dinner is over you’re going to want to decompress or sleep most likely…and sitting in your hotel bathroom on your phone or laptop, while the kids sleep, might not be the ideal way to end a very long day.

BUT you’re all grownups, do as you will 😉

 

 

Two Gates.

Monkey’s new school has a very small playground/courtyard between it and the street. It has been fenced in for safety purposes since the kids stay outside until the first bell rings1and has two gates. Here, let me illustrate:


On day one we walked through the main gate and you know what that means, right? It means, we shall never enter the side gate. Ever. In fact, we shall never look at it…not even when Umma walks through it. We shall continue down the sidewalk, watching her out of the corner of our eye, acting as if she has simply ceased to exist until she reaches the main gate. Then we shall grab her wrist and hold on so tightly that we will leave indents. Or something like that.

Since I can never just leave well enough alone, I have tried to convince Monkey to use that gate periodically since the start of school. Every time I do it I hear Amy Winehouse in my head….”I won’t go, go, go.2” Monkey has even been grabbing my wrist before we got anywhere near the gate lately to keep me from even attempting to deviate from his routine.

Totally not a big deal, right? Right. Except…I can never leave well enough alone…I don’t know why I need to pick until it bleeds I JUST DO. So, this morning, I evaded Monkey’s desperate grab for my wrist and slipped through the side gate. Before I was able to even draw in a mental breath to start singing along with Amy, Monkey slipped through the gate and took my hand. I nearly froze but stopping would have been disastrous…he likely would have ripped off my arm and dragged it through the main gate and I’m sort of attached to both of my arms3. Then I heard Monkey say, under his breath, “Spwash.”

There were puddles on the playground. Monkey loves puddles but Monkey had been instructed to stay OUT of the puddles because he tends to end up soaked to his knees otherwise. I didn’t even think twice, I whispered, “OK, go splash.” And he did. And we were both thrilled.

He might not ever walk through that gate again but he and I now know that he can. And that’s enough for me.

 

  1. Weather permitting. []
  2. Hey, it makes morning drop off more bearable, shut up. []
  3. OMG, I crack me up. []

This is what happens when you work to a student’s strengths…

Now that we’ve had the most amazing IEP meeting ever, the school has already started implementing the changes we discussed! We haven’t even signed the IEP yet but there’s no doubt we will…especially since we’re already seeing the benefits.

First, let me start with a story. Yesterday, Monkey and I were organizing his toys and I found a set of flashcards. Just on a whim I got him to sit down with me and I showed him the backs of each card where the word was written without a picture. He was able to read 3 of the words!

Only 3?” one might ask? Yes, only 3 words we have never, not ONCE, tried to teach him…only 3 words he’s only ever seen written down as part of a story we were reading to him. So, only 3 is pretty freaking awesome.

This AM I e-mailed his teacher to let her know that there are 3 more words he can read besides the sight words she is working on. I got this in reply:

That’s great!

He did the most awesome job in writing workshop this morning (in gen.ed. 1st grade) with the assignment I had for him.  I’m very happy because I used all the words we have been working on reading in our classroom and he seems to be retaining them (and generalizing this to other settings and materials).  I had him basically reconstruct the farm book to teach him the concept of where the pictures go on the writing page and where the words go, and to teach the steps of the writing process they use in first grade.  Then he had to construct the sentence in chunks “I see” then “a” then whatever the animal was “cow.”  He found all the correct picture/word pairs independently and by the end he was starting to understand the order of words in the sentence.  He began reading the sentences we constructed unprompted.

I’m not sure exactly what’s happening but whatever we are doing is working so let’s just keep going!!!

First day in writing workshop and he’s already blowing their minds and showing them he can master academic skills in an inclusive setting…perhaps we did have a clue when we said that math wasn’t the best idea…