We planted a seed and watched it grow.

That’s not a metaphor.  We literally planted a seed, in a cup, and it grew!  For someone with what one might consider to be a brown, wilted, pathetic little thumb, that’s pretty darned exciting!   So what sort of seed did I pick, you may be wondering?  A lovely flower, since we always planted sunflower seeds in little cups when I was little? 

Nope, that wasn’t for us.  We planted…corn.  I know it seems odd, I guess because it is a bit, but we’re having our very first “real” garden this year (as opposed to the 5 gallon buckets we’ve been planting in for the last few years) and I wanted corn!

Since planting that first seed last week, we’ve added 9 more corn, 6 cucumber, 2 parsley, 2 basil, 2 pepper and 4 varieties of tomatoes (6 cherry, 6 plum and 2 each of two large sizes.)  We’ll be planting more corn in two week intervals over the next month to spread out the expected bounty.  Gosh, I hope it works! 

If you have time to kill

and want to do a good deed check out this website called Free Rice

It’s a multiple-choice, vocabulary quiz that adjusts the level of difficulty based on your answers.  Anything you get wrong comes up again so it’s educational as well.  Plus, for each answer you get right they donate 20 grains of rice to the UN World Food Program!  That may not sound like much but in about 10 minutes I’ve donated 3,640 grains of rice which is a half a cup of rice (when cooked it makes a full cup.)  Not bad for the time I normally waste while I drink my morning cup of tea. 

I am shooting for a full cup of dried rice.  Really, check it out.  My current score is hovering between 40 and 46, tell me how you do!

Edited to add:  Check out the “Options” tab it let’s you set all sorts of things, like starting out at Level 1 if you want your kids to try, or higher if you want to keep it to yourself.  You can set it to keep track of how many grains of rice you’ve ever donated or you can start from scratch each time!

Potty Talk

For quite some time now Monkey has been aware of his need to potty. He seeks out appropriate privacy and shows other classic signs but the piece that has been missing is his ability or desire to communicate to us what is occurring. Obviously, there were a few non-verbal cues that we would pick up on but he never indicated to us by speech or by sign that he’d soiled his diaper. If we took off his diaper he would let us know, in no uncertain terms, that we were to put a new one on right now, thank you very much.

He had some success with peeing in the toilet or his potty chair as long as 18 months ago but he never sought us out or initiated the process. He would pee, or try very hard to pee, on request but that was it. Once he started school, going to the potty became a part of his everyday schedule. After observing the process for a while he decided he too wanted to go potty. He would join his friends in line for the toilet and pee into the toilet standing up. We were even informed that one of his great friends at school (a little boy) was being very helpful about showing Monkey how to aim. Around this time he decided he didn’t want to use the potty chair at home.

We were fine giving up the potty chair for the toilet but our toilet is much taller than the pre-school toilet. He had difficulty hitting his mark, so to speak. I’m not sure if he was discouraged or just not a fan of the adult sized toilet but soon his potty strike extended from the potty chair to the toilet at home and we’ve been stuck ever since. If we ask him if he wants to go potty he will sign “all done, all done, all done” and run away. We don’t want to push the issue so we decided to back off. He continued to participate at school so we weren’t too worried.

I’m not sure how long we would have elected to wait if he hadn’t discovered a rather disturbing pastime. What I’m about to share is fairly gross. I know parents of special needs kids will be familiar with this sort of thing but I want to warn anyone who is even slightly squeamish about poop to just hit the back button and skip the rest of this one. Really.

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It was a fine day to play hooky!

Do not tell anyone but, last Friday, I played hooky!  I knew it was going to be a slow day at work and I desperately needed a break so we dropped Monkey off at school and we came home.  We had a nice relaxing morning and then decided we should take Monkey to the Museum of Science during the afternoon.  Duhdee was not very optimistic about the entire outing, he seemed convinced that it would end badly but I bullied him into going along.  I knew Monkey would at LEAST enjoy the ride on the T, if nothing else, so I thought we had a decent chance of a successful outing.

I was absolutely, thoroughly (and disgustingly proud of it) right.  The ride on the train was thrilling.  We even got to ride on two different types of trains just to get there.  Anyone who thinks it isn’t exciting to commute in this city should spend 5 minutes on the train with my child.  It’s pretty darned clear by watching him that this is the BEST THING EVER!  When we got off the train we got to walk along a busy street and see the traffic speeding by.  There were cars and trucks and duck boats too!  We walked across a bridge that rumbled beneath our feet which was exciting but only in hindsight.  During the walk across it was fairly tense but as soon as our feet touched solid ground on the other side he looked back with his face lit up.

As we approached the building we saw a giant DINOSAUR and we learned that dinosaurs apparently whisper their roars in Monkey’s world.   The doors to the museum spin and you can push them, unlike the doors at Children’s Hospital where if you push them they stop moving which is not fun at all!  Once inside there was the Archimedean Excogitation kinetic sculpture to study and there were escalators running up and down 3 stories.  We visited a space capsule and Monkey lay down on top of me in one of the seats and checked out the control panel.  We visited an undersea exhibit with computer generated fish and sharks, so many buttons to push!  We even spent some time playing with a tornado.

After we left the museum we went back into the city and had dinner before we left for home.  Initially, they were going to seat us in the middle of the very busy restaurant but I’ve learned my lesson from other trips and asked for a quieter seat.  Monkey was perfect at dinner.   I think it was one of the nicest dinners out we’ve ever had despite the slow service which normally causes all sorts of problems. 

After dinner we caught the T back home, it had been a long and busy day and the train was very crowded but Monkey sat on Duhdees lap and snuggled for nearly the whole trip.  At the very end he decided he wanted his Umma but I had nowhere to sit so we ended up standing together at Duhdee’s knees for the last few minutes.

It was so nice to have a nice outing with no tears from anyone!  I wouldn’t have blamed Monkey even a little bit for being grumpy on the way home, he was so very tired, but he was a superstar! 

To test or not to test?

This may seem a bit odd to people but I still haven’t been tested for Fragile X. It was one of the very first items brought up by the geneticist I met with in the weeks after Monkey was diagnosed but I was not able to think about it at that time. I was too focused on what this news meant for Monkey. I didn’t have the emotional energy to think about what it meant to me.

Since that time I’ve periodically given some thought to being tested but never reach a conclusion. I am vaguely worried about what having the test in my medical records could mean for me. Genetic test results are well protected in Massachusetts and in Maine, the two locations I will likely spend the rest of my life living in, but that is not the case in many, many other states. What if I decide to move to another state? What if that decision is made for me by my career or some other situation I can’t yet anticipate and I move to a state where it is legal to discriminate based on genetic information? What if I move, only to find out that I cannot obtain insurance for myself or my son because of the testing?

Other than that fear, there is a bit of “What does it matter?” involved as well. I am what I am. Is there a reason, beyond curiosity because my insurance won’t pay for that, to establish whether I’m full mutation or carrier?

What do you think?

I’m joining the crowd.

FXSmom over at Fragile What!? had a great idea to share memories of her life with Fragile X so I’ve decided to join in as well. I’m going to cheat for my first post though. I wrote this in 2006 about two weeks into our journey. Reading it makes me angry all over again. This really set the stage for our first year as parents of a special needs child and perhaps makes clear why I noted on Monday that our first 6-12 months were really rough ones.

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Under the best of circumstances hearing that your child has Fragile X is going to suck. It rips your heart right out of your body, without a doubt. Even in the weeks we were waiting for the test results we knew this. Anytime I would try on the diagnosis I would feel like I’d been punched in the stomach. Tears were inevitable. But how we learned that Monkey had Fragile X? Well, that was inexcusable.

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On a lighter note.

Monkey is, without a doubt, a mama’s boy.  He will do and say things for me that he will say to no one else.  Sometimes I’ll ask him to share a new word or a new skill with Duhdee and he ignores us.  Sometimes he’ll even be doing something particularly cute and as soon as Duhdee walks into the room he will stop.  I know it won’t always be this way.  There are things he does with Duhdee that I can’t do with him.  There will be more and more of these activities as he gets older, I’m sure.  So for now I store away little nuggets like this to carry with me later:

From school, Monkey was on a walk with his class after recess.  As they approached the driveway at the front of the school where we do pick-ups and drop-offs he said, clear as day “Mama.  Home.” and he pointed in the direction that we drive away.  One thing that is particularly funny to me is that I never do afternoon pick-ups, those are Duhdee’s responsibility!