Now I am going to talk about the IEP meeting…sort of.

I’m not going to get into details because nothing was decided. The meeting ended up being a forum for the school to argue their case for Monkey’s placement for next year. We were not surprised by anything we heard. We had read the reports and could discern the direction they were leaning. Duhdee and I…disagreed with… their conclusions; conclusions they reached based on the district’s1Ā special education philosophy and not targeted for Monkey specifically. That is to say, they are not picking on us. They are simply…misguided…in our oh so humble opinions2.

There were a few things that were said that were rather upsetting3 and we are working on our counter arguments and, also, preparing our argument for the placement we believe is most appropriate for Monkey. This all sounds so civilized doesn’t it? Some of you know better šŸ˜‰

SO. The details are unimportant right now because it’s an ongoing discussion. There is something very important I want to say about the last few days. I suppose I should start with my mindset going in to yesterday’s meeting. If you have a child with an intellectual or developmental disability, you will know exactly how upsetting these reports always are. Even when the reports are glowing in reference to the progress your child is making, they are devastating when they (necessarily) point out how far behind your child is. It is heartwrenching and it is disheartening.

Speaking for myself, they make me question every decision I make about Monkey. Would he be so far behind if we’d done more or made different decisions? I feel personally responsible for everything, right down to his very genetic make up, thatĀ has put us in this situation. I don’t blame myself4 but I do feel like I should have worked harder somehow. Self-doubt creeps in.

I left for that meeting with those awful, dark voices whispering in my head. I’m failing him. I haveĀ made the best decisions I could and it’s still not enough. Maybe they’re right. Maybe I just need to let them decide. Maybe they know best. Maybe Monkey would be leaps and bounds ahead if we’d just listened back when he was 3 and put him in a self-containedĀ ASD classroom.

Fortunately for me I have this personality quirk…I’m allowed to question myself, to doubt myself, but no one…NO ONE…is allowed to talk down to me or question my intelligence. I am allowed to question whether I5 haveĀ done enough to bring out the best in Monkey but no one…NO ONE…is allowed to question his potential. To do either enrages me. To do both…not good.

Some of you picked up on how angry I was yesterday…and I was much more polite publicly6 than I was in person. The texts I sent yesterday alone would probably win me a spot in hell šŸ˜‰ It could have been really bad. I could have sent angry e-mails to the school. I could have continued in that useless spiral of anger but instead the most amazing thing happened.

You. You all lifted me up when I couldn’t see through the anger and hurt to do it myself. The support I received from other parents got me through that first rush of anger and despair so I could get to where I am now. Where Monkey needs me to be.

I have remembered why we have made all the decisions we have. I have remembered all of the inspirational stories you have shared about your perseverance and your kids’ resulting achievments. I have remembered that the only person with the power to hold Monkey back is *ME*. And I will be damned if I let that happen.

So, thanks to you all, we are re-committed to, and confident in, the course we chose 4 years ago. Monkey belongs. No matter how you phrase it, no matter how well meant it may be, you will not ever convince me that he doesn’t. I have the love and support of hundreds behind me…you will notĀ win.

  1. outdated []
  2. Stop laughing! []
  3. UNDERSTATEMENT OF THE YEAR! []
  4. Down Holly! []
  5. or you []
  6. Except for that unfortunate incident at the grocery store when they would notĀ let Duhdee buy me the wine I hadĀ just spent 20 minutes choosing! Dicks. []

I am not going to talk about the IEP meeting.

Traditionally when we have sucky IEP meetings we work it out over time so we’re happy. I’m going to have to assume that this will be the case again this time or I’m going to scream. Hmmm, wait, did that already. Perhaps I’ll text *someone* a string of expletives. Oh…wait, did that already too! I guess I’ll have to do something MUCH worse. I don’t know what but I’m sure it will come to me.

ANYWAY, what I’m going to share is how my little punk of a child continues to manipulate me and leave me HAPPY about it. We just had the following exchange (Scene, my bedroom, I’m lounging on the bed losing my shiznit on Facebook over wine nazis and school administrators who…wait…not going there…sigh):

Monkey: Money, birds?

Money: Go use your computer.

Monkey: Cold, Money. Cold. (Complete with fake shivering.)

Money (skeptically): You’re cold?

Monkey: Yes! Birds?

Money (even more sceptically): And playing birds will make you warmer?

Monkey: YES!!!

Money (grumbling) hands over the phone and then goes to brag to Duhdee how adorable her son is.

Rawr!

Earlier today Monkey and I stepped out to escort the dogs to the facilities1. As we stood there, one of the little girls in the neighborhood, I would put her around 8 or 9 years old, walked past us. Monkey silently watched her approach, I was surprised that he wasn’t yelling “Hi! How you doin’?” at her the entire time she was in sight. Just as I decided he wasn’t going to flirt with her after all, Monkey threw his arms up, hands twisted into claws and yelled “RAWR!” at her. The poor girl just about turned inside out! I smiled and explained that it was his dinosaur impression…

Oh. Huh. I guess he’s a ladies man even when he’s in dino form.

  1. Helpfully provided by the city []

Ten days, gone.

I know I’ve been MIA here for a bit. Duhdee had back surgery andĀ I took on all the household tasks for a while there. It’s not easy being two people, especially when you have a little Monkey who’s a little thrown off by all the changes in routine. Fortunately for me, we have an amazing network of family and friends, both near and far, who took very good care of us! I will never be able to thank them enough for all the kind words and prayers that they shared…or the cookies, meals and Monkey-sitting! The outpouring of love was…well, it still brings tears to my eyes.

THEN, Monkey had a birthday. He’s seven now. Seven. On the one hand, I am shocked beyond comprehension how we’ve gotten this far this fast. It doesn’t feel like it’s been seven years since I first held this little boy in my arms and fell head over heels in love with him. It feels like yesterday. Of course, part of that is the fact that he is so sweet and lovable that he makes me fall head over heels in love with him every day.

Then on the other hand, I feel every one of those years as a weight in my heart. I remember when Monkey turned two, we’d just gotten the Fragile X diagnosis and we were still in total shock. We felt like our lives had been completely and irrevocably destroyed. Every dream, every wish, every imagined life event…*poof*

There were two things that kept me going back then…my love for my husband and son and the hope that we’d have a cure. I decided that we would have a cure before Monkey turned eight. We had to have a cure by the time he turned eight or we would forever be stuck in this horrible world of Fragile X. Eight was so far away back then, surely it would happen. There was talk of a cure, there were treatments and exciting research just around the corner.

Eight isn’t so far away anymore.

A lot of things have changed for us since then, we no longer feel like we are stuck in any sort of nightmare world. We love the friends and family1 that Fragile X has brought into our lives. We see the joy in having a child with special needs. I think we’ve experienced more pure joy in raising this little Monkey than many parents of “typical”Ā children ever do.

Most parents of typical kids get to celebrate all those firsts…word, day of school, sleepover, driving, prom…but we celebrate every day. Every single word that passes his lips. Every block stacked. Every piece of train track assembled. Every question asked. Every answer given. Every single step forward that he takes makes my heart swell with pride and love. He takes my breath away. Daily.

So…what is the issue? Why is there still a weight in my heart? Apparently, some little part of my hindbrain is not with the program. There is this little tiny part of meĀ that has, unbeknownst to me, beenĀ silently counting down the days to eight all this time. That little tiny part of me has started whispering…it’s almost too late…we’re never going to get away…we’re never going to wake up from this.

MOST of me is flipping that litte tiny part of me the bird and telling it to quit f*cking whining already. We’ve already woken up and we are exactly where we are supposed to be…we’re happy, dammit, what is your problem? The trouble is that while most of me can drown out the sound of that tiny little part of me…that tiny little part of me carries a blade. No matter how much I argue with the voice and win, it can still cut me and make me bleed.

My hope is that when we get to eight I can finally tell this little tiny part of me to suck it. It lost, we’re still here and we’re still happy. I’m just hoping that I don’t spend all of seven fighting this battle and missing out on the joy and love that surrounds me because seven is pretty f*ucking awesome and I don’t want to miss a second of it.

  1. Because, yes, I now have a few new sisters and brothers I would not have otherwise met. []

He always has his own twist!

Earlier Duhdee asked Monkey to wish me a Happy Mother’s Day. Since Monkey doesn’t call me Mother or Mommy or any of those traditional names he put his own twist on his declaration.

“Happy! Money! DAY!”

And yes, I understand that’s totally improper punctuation but that is exactly how my boy talks. He lives his life in ALL CAPS and exclamation marks…I wish we were all so lucky.

**AND this should have been posted HOURS ago but someone (web server company) broke mah blawg!!** Jerks.

Wow, you’re good!

I asked earlier todayĀ that you keep your fingers crossed for a quicker surgery date for Duhdee…surgery is now set for a week from today. Holy cwap, folks!

Will you keep your fingers crossed forĀ me to win the lottery next? šŸ˜‰

Yeah, he totally loves me.

Monkey used to have a particular way he liked to greet me…basically crying, demanding that I put on pajamas and, uh, more crying. Also, some puking.

Lately, though, he’s been much nicer to me when he sees me. I think the anxiety medication has a lot to do with that. There are two that totally stick out in my mind and make me laugh every time I think about them:

  1. Last Friday, I picked Monkey up from school because poor Duhdee couldn’t move1.Ā  When the teacher opened the door she saw me and asked Monkey, “Who is out here?” When he peeked around the corner he raced at me, wrapped his arms around my waist and squeezed. He was moving so quickly that he pushed me back a step!
  2. Yesterday evening, when I got home from work, I walked up the front stairs and heard Monkey call out, “Money, how you?” Just as I hit the top step he raced into the hall. He looked at me and let out a huge gasp…complete with adorable facial expressions of surprise. Then he laughed when he realized he’d made me laugh.

He is just a constant source of amusement and pure love. He’s my sweet, sweet boy…even when he’s puking but I prefer surprise and delight, to be honest šŸ˜‰

  1. I am so over his back pain, as is he, please cross your fingers for surgery soon. Certainly sooner than May 27th! []