Life with Fragile X Syndrome

Canada might have been a mistake.

Melissa

I left my darling little boy in the hands of his Duhdee and I came back to hear this story…

Duhdee: “So, on Friday, after he took his shower he watched me take my allergy meds and put on deodorant…”

Umma, thinking “Okayyy?”

Duhdee: “Then he told me ‘My turn.’

Umma: …

Duhdee: “He wanted to wear my deodorant.”

Umma, laughing because that is just ridiculous, right?? RIGHT????

Yeah, I’m not laughing now. Especially since Monkey wants people to sniff his pitts to smell his deodorant! 😮

I’m back and my liver still works!

Melissa

No one is more amazed about either of those things than I. There was a 1/2 hour, standing at security at the YYC ((Look at me, the seasoned Calgary traveler after one trip, snort.)), when I thought I might not make it home. I thought I was going to have an absolute stroke when one (out of ten) of the security guards decided that a souvenir that I’d bought for my 6 year old was too dangerous to be allowed on the plane. Because that’s something I do, give deadly objects to my child. Whatever. I checked the bag instead and everyone was happy. Except for the security guard who got sent on break so his supervisor could talk to him about how he handled the situation. Srsly. The other guards were joking around with me trying to smooth over the ridiculousness of the situation.

Anyway. I’m home and I have the very best memories ever to cherish. And I might even be allowed back into Canada some day! Woot!

While I was gone I was keeping up with Facebook and sharing some of the amazing times we were having. Part of me didn’t want to share because I didn’t want to make anyone feel badly for not being included but most of me wanted to share every detail and make you all absolutely sick with envy. Not because I’m an a$$hole ((Though I am that too!)) but because I wanted you all to get get excited enough to take a trip of your own.

Those of you who were looking on and thinking I WANT THAT! Do it! I’m sure there is someone you have interacted with on the listserve, through Facebook or through another blog that you feel an affinity with. Maybe they’re local to you, maybe they’re not. Just remember, this all started with ONE mom saying she wanted to get some FX Mommies together. There are a lot of “impossible” things we face in life, a weekend away is not one of them!

Oh, I needed this!

Melissa

The ladies were trying to get me to blog last night but I was too busy nearly peeing my pants. This is just an inevitable occurrence when you take four moms and introduce much hilarity ((And how freaking ironic would it be for us to “get away from it all” only to still find ourselves cleaning up an accident???)).

I wish I had amazing images of the gorgeous mountain scenery and maybe a few shots of us posing like grown-ass adults in front of historically significant monuments but I feel that it is my duty to let you know that you will, very likely, never see such a thing here. Sorry. It turns out that when you take THESE four moms and put them in a beautiful cabin in the mountains, all you get are pornographic snowmen and attempts to stuff people into suitcases. Who knew that getting away from it all would bring out our inner frat boy?

On the serious side, we have all cried too. How can there be no tears when you get four moms of special needs kids together to share their stories and support each other? What is so amazing about it though is that they’ve all been tears of gratitude. These women understand me on a level that is bone deep. They GET IT, they have walked in my shoes. Sometimes they’ve done it better than me and sometimes worse. We can share the stories that we carry in the dark recesses of our minds and feel…understood and accepted. It turns out that those stories lose a little bit of their power every time you drag them out into the open…every time you give someone the opportunity to validate how awful it was and let them lift a bit of that burden off your shoulders.

I think it’s important to remember that no one of us is free of the emotional turmoil that comes gratis ((Gee, thanks for that freebie!)) on this journey. No one of us has all the answers. No one of us has always handled everything perfectly. We are all the perfectly imperfect parents of some amazing kids. Whatever we do, whatever struggles we power through, whatever obstacles we seem to leap over in a single bound…is for these kids we love with every fiber of our beings.

We are all members of an exclusive sorority. A sorority of fear, grief, guilt, failure (both big and small), success (this only comes in epicly huge with our kids), joy, gratitude, awe, inspiration and love. I so needed to be here for this…

Cwap, that got way deeper than I intended.

Oh, look…I DO have a picture of one of the gorgeous mountains surrounding us!

I took a snowball to the back of the skull for this one, you’re welcome.

I’m going to Canada!

Melissa

I’m leaving bright and shiny early tomorrow. I’ll be up before the sun, heck, I’ll be in the air before the sun rises. I shall wing my way across the country and meet up with the incomparable Holly Roos. Then we shall fling ourselves northward to the open arms of Karen Helm ((Hahaha, totally kidding, I know how to spell your name Karen Kelm, I promise!)) and Talitha Humphrey. If you aren’t friends with those three ladies, you really should be. They’re amazing and I am so thrilled to be going away for my first ever Mommy’s weekend with them.

Between the four of us we will be representing 3 Fragile X groups, how cool is that? Being four moms who are all active or becoming active in the Fragile X world we could not possibly do a weekend away without a logo.

If I do, in fact, survive. I shall have tales to tell. Of course, I will have to leave out the drunken bits. Hopefully there will be something left to tell!

And, of course, he was fine.

Melissa

I totally knew he would be. What?

Once he got through the transition, he settled down and had a good day at school. Sometimes I really can’t listen to my heart because my heart is not very smart. My heart wants to keep him happy and laughing even if that means we stay in our pajamas and never leave the house. It’s a good thing my head gets a word in once in a while and keeps us on the path to building a GOOD life for this little Monkey…one that does not revolve around pajamas and never going out or doing anything.

Well, that sucked.

Melissa

We just dropped Monkey off for school. I commented last week that Mondays are generally a little tough because he, quite frankly, doesn’t want to go back to school. He would much prefer to stay home in his PJs with his dogs and…I can’t argue with him. I’d rather do the same. BUT, we joyfully head off to school each Monday with a grumbling, unconvinced Monkey in tow.

This morning we had the added fun of a nasty winter cold. He has a cough and a runny nose but no fever. He doesn’t feel great but he doesn’t meet the school’s guidelines for staying home either which are fever, vomiting or diarrhea…so. Off to school he went. I did mention to the teacher that conjunctivitis is apparently making the rounds since Monkey is prone to it and to please watch him for any symptoms but I don’t think that’s an issue…and trust me when I say that he was so upset about going to school I would have jumped at a chance to take him straight home.

We eventually left him and I made Duhdee sit in the car out in front of the school for 15 minutes. Another mom who had been in the room when we left came out and reported that Monkey was fine, he’d gone to sit on the couch with a blanket. Uh, have you met our hyperactive Monkey? That is not a good sign! After she left I ran in to the school office and asked them to call the classroom to check on him. The assistant who answered said he was fine and was playing in the sand table ((Oh, that’s going to go well with a runny nose!!!)) so I could do nothing more but leave.

Now, I’m at work and still worrying about my guy. He’s fine. I know they wouldn’t have kept him if they thought he wasn’t but…my Mommy guilt doesn’t seem to be accepting this today. *Sigh*

A delicate balance.

Melissa

We’ve been walking a really fine line here at Chez Monkey for a while now. Since Monkey’s AT specialist passed away, actually. We’ve been trying to deal with the sadness we feel at having lost someone we really liked. Someone who was always such a huge advocate for Monkey within the IEP meetings and, also, with our insurance company. She managed to get my insurance company to pay for a $7,000 device for Monkey when the policy stated they’d cover $750. After our deductible. So…she was pretty much a miracle worker. AND she was nice and funny and so completely dedicated to her students. She would e-mail us at all hours of the day though we tried very, very hard to respect her “non-school” hours.

On the other side is this, Monkey has a $7,000 voice output device that is nothing more than a weight in his backpack. The AT specialist passed away just a week after she locked down the device so thoroughly that we could not even turn it off. We had not received any training on the device at all. The teacher and classroom assistants had not received any training on the device at all. There is no plan to integrate it into his day. The district had two AT specialists but we found out after E’s passing that the other, had quit, possibly weeks before. No one will say.

So.

Monkey has AT services written into his IEP. The district has no one trained to provide this service due to this terrible loss we’ve all suffered. Currently, the inclusion specialist is taking the 30 minutes a week that belonged to the AT but she has no idea what she’s doing. The device maker did set up training for yesterday (which I couldn’t make) so that is a step in the right direction but that is the result of Duhdee taking the lead, not the school.

I’ve been waiting for the district to come up with a plan but so far nothing has been put forth. I don’t want to make this into a “thing” but it’s quickly headed in that direction and it makes me sick to my stomach. I don’t want to have to call my advocate and call an IEP meeting to work out compensatory services. I don’t want to have this fight when there is a much bigger fight looming this spring over placement…there is no inclusion classroom in the district for 1st or 2nd grades and that is where Monkey belongs.

I guess this isn’t really about what I want though, is it? This parenting gig never is. It’s about what Monkey needs. I’ll be making that call to the advocate now :-\