My brain frightens me.

My brain frightens me.

The sun is shining, leaves are appearing on the trees after a long, long winter, the birds are singing and none of that matters because it’s Monday. I’m not normally a total Monday hater but I woke up this morning absolutely drained. It’s completely understandable since I spent my entire night with auto theft rings1, spiders2 and muggers3 all while schlepping around a prom dress and a wedding dress because no one would tell me which one I needed to wear. So. Clearly I cannot be expected to be shining, blooming or singing today. Also, just as clearly, there is something really wrong with my brain’s wiring4.

In an effort to turn my day around I’m focusing on this…yesterday Eric lost his mind announced that he was going to restart a 5K training program. He decided that he would use this particular program because it would have him in 5K shape faster than the Couch-to-5K program we used the last time we lost our minds decided to run a 5K. I am fairly sure that he purposefully told me this in the car, while I was distracted by Subway Surfers5, because there is no other explanation for what happened next…

“OK. Hey, CALEB and I should do it too!”

Eric immediately agreed that was a great idea.

Srsly. WTF?

When we got home from shopping we all changed into running clothes, it was then that I clued Caleb in on the fact that he’d been sucked into Money’s colossally stupid plan too. We managed to get him out the front door but the dude immediately put on the brakes and informed us he had to pee, poop or, since we didn’t buy either of those, spit (vomit)…complete with amazingly realistic sound effects. We cheerfully ignored him and marched his little bum up the street toward the park. After we completed our five minute warm up walk, Eric and I dutifully began jogging when the audio signal played. And we jogged and jogged and jogged…in place, forward, backward and in circles but we did not make any overall forward progress because Monkey was now cheerfully ignoring us. Where on earth did he pick up that habit, I wonder?

Eric decided that the problem was where we were running so we walked the remainder of the way to the park. Eric restarted the timer and when the audio signal played again we began jogging. Monkey even jogged! Three steps. Then he announced he had to pee, and grabbed himself just to illustrate since we suddenly both seemed to have become deaf. Now, if we hadn’t known for certain that he did not have to go (this is his favorite delay tactic), we would have felt really bad about telling him, “No, you do not. Let’s run!” Instead we only felt a little bad because everyone who was walking, jogging or biking around us clearly thought we were being assholes to this preshus little cherub. Meh. Mind you’re own business. And now…RUN, soldier….RUNNNNNNN!!

Nope. Not gonna do it.

So Eric and I do what we always do, eventually, we adapt. I generously told Eric that he could run and that I would just stay with Caleb and walk. Heh. Eric did the first cycle alone and while Caleb and I were walking I realized something really, really weird…I’d actually wanted to run and was a little disappointed. Srsly. WTF?

I wracked my brain for all 90 seconds of that first cycle and Eric returned to us to do the walking portion. When the audio tone sounded again, Eric took off and I suddenly had an epiphany…audio signals…C had no timer! They were completely random as far as he was concerned and completely random is bad6 for kids with fragile X induced anxiety. D’oh! So I found a visual (a fence post) and told Caleb, “When we get to that fence post we are going to jog until the end of the fence.” When we reached the fence post, we BOTH began jogging, and instead of whining and grabbing his crotch…he was laughing. I’m a frickin’ genius.

We finished our entire run this way. We didn’t make it through Day 1 of the program officially…and our time was glacial…but we did it. We went for a run as a family and we had fun. Woah. How awesome is that? Totally worth shining, blooming and singing over!

 

  1. Mercedes, BMW, Lexus and Oldsmobile?? []
  2. Oh, holy CRAP it was huge! []
  3. He did not get my wallet, I screamed bloody murder. []
  4. Please just act surprised by that admission, OK? []
  5. Thanks for the heads up Allison & Parker! []
  6. Very, very, very, very bad! []
We’re too close to stop here!

We’re too close to stop here!

Last Friday, Caleb and I were on our way to Canton, IL…to Holly’s house. We were a day late for the start of the visit due to severe flooding in that area but we were there in plenty of time for the really big event…the 10th Annual Walk for Fragile X Syndrome and 3rd Annual Fragile X 5K!

Caleb just loves Holly, Holly’s house, Allison, Parker and Daisy…we hear a lot about them from him…the boy does have excellent tastes, just like his mama! He had no idea what was planned for Saturday, and I had no idea how he would handle the crowd and new location. He did so very awesome!

He spent hours and hours in the gym in the bouncy house or playing basketball with whoever he could trick into catching the ball (a little hint, if C ever throws you the ball…please be prepared for a game of catch that will last as long as your shoulder holds out…) There are potentially several Cantonites? Cantonians? who were in shoulder slings the following day. While these good citizens provided free childcare, I was able to walk around and chat with all of the amazing people that had come from near and far to support the fragile X community. The one and only time Caleb needed me, he came out of the gym and found me to get the help he needed (really, he only needed “A dollar? Rootbeer?”) then he went right back to playing.

This event has raised over $30,000. Can you believe that?? THIRTY THOUSAND DOLLARS! Holly was thrilled, everyone was so very excited…but I’m a greedy girl…I asked Holly what her record was and she told me $32,000. Say what? We are NOT going to get that close to the best walk total EVER and just stop.

SOOOOOOO….donations will be accepted through May as they are every year. Don’t you want to be a part of the best walk ever?? Please visit the fundraising page to push us over the top! We need to hit at least $13,000 on this page to push us over…whoever pushes us over $15,000 will get a prize. I’ll have to think about what I’ll do…it might be fragile X related, it might be some autographed Caleb art, hmmm…I might even be able to send you some drunk gummies (except that might be illegal *ahem* so maybe not…)…I’ll take requests/suggestions for a prize. So COME ON!

Join all these amazing people who walked and the equally amazing people who have already donated to make this Holly’s best walk ever!

 Go donate now! Walk for FX

How can you possible say no to this face??

Quick, catch!

Today.

Today.

I’ve written several blogs already today and deleted every one of them. Blogs filled with fear, hurt and anger…oh, yes…the anger.

But, today, I needed something to lift me up above those feelings. I found this photo I took a couple of weeks ago and never got around to sharing.

Today I needed a reminder that there are butterflies, rainbows and happiness still to come. The sun will shine again. I will have a sore shoulder from throwing Caleb’s ball up onto our roof for him over and over again. I will sit on a grassy hill at Castle Island and eat ice cream with him and Eric again.

Also, baseball…there is baseball to come. Next Tuesday, in fact. If all goes smoothly Caleb will step onto the field at Fenway Park alongside Eric and our friend Denise Devine and they will be recognized for their role in making Fragile X Awareness Day a reality in Massachusetts.

On a day when my thoughts are dark and scrambled, when everything just feels wrong…excitement for the future takes hold again. Life is so very strange, isn’t it?

Fun and Fundraising!

Fun and Fundraising!

A local business has offered to host a fundraising event for the National Fragile X Foundation! Eric and I will be going (YAY for grown up time!) and we’d LOVE to see some other families and friends there too. 25% of the proceeds will benefit the NFXF!

Boston View @ Kingston Station 6pm-8pm by Allan Dygon

Please join “Painteria” for a fundraising event on Monday, April 29, at the Kingston Station restaurant at 6pm-8pm. You will be provided with a canvas, easel, paint, brushes and aprons. Along with Allan Dygon, who is a local artist, he will guide you step-by-step through the process of creating a beautiful artwork. For more details please check out the website: www.thepainteria.com

The dreaded three year re-determination.

The dreaded three year re-determination.

Image from: Shut Up About Your Perfect Kid
Find more funny IEP goals at Funny IEP Goals: Laugh Your Behind Off in 15 out of 15 Opportunities

I don’t know how it’s possible but it is, once again, time for Caleb’s 3 year re-determination for special education.

For anyone who’s not familiar with the process, every 3 years a child with an IEP needs to be completely re-evaluated by the school district to determine if they still qualify for special education services. I wish there was room for doubt here for Caleb but we all know that’s not the case. As amazing as his progress has been, he’s still not at the level of a typical 9 year old. He will still qualify.

After all the fights we have had with various employees of this district, I’m still suffering from PTSD. When I see an envelope from OSE (Office of Special Education) my heart starts racing and my hands will shake. How ridiculous is that?? I read every line and completely obsess over it. The line item that ALWAYS makes me sweat is the school psychologist’s line. I’ve learned from past experience that they write these things in a very vague manner to give themselves maximum flexibility. Maximum flexibility does not work for me, I need specifics.

I feel like we have a good working relationship with Caleb’s teacher so I always hate to ask questions that might make her feel defensive. I know she isn’t all of those other people. I know this school isn’t those other schools. I still need the reassurance though.

Today I brought up the subject of the tests the psychologist will use. She wasn’t sure what tools would be used to evaluate him but she reassured me that she would be present throughout. I looked nervously at Eric and just went for it…”We don’t sign off on IQ tests…” To which she replied…

“What is this 1950? We don’t use those.”

Uh, what? Really? Because we’ve had two school psychologists in this district who were pretty darned fixated on IQ.

I must have looked confused because she added, “Whatever she uses, I’m pretty sure it will come back non-testable because he doesn’t know her. I’ll be there to make it as easy as possible and I might be able to ask the questions since I’m the familiar test giver, he has accommodations for that. What is really important is what the team members say, we all know him, we know where he’s at. We work with him every day.”

She offered to find out what tests would be used but it was my turn to reassure her, “You know what you’re doing, we’re good.”

It’s still going to suck…we still need to hear all the things he isn’t doing…but at least we don’t have to sit through that, getting beaten down emotionally, only to have to fight every step of the way through the rest of the process on top of it.

As we walked to the truck Eric shared something he’d forgotten to tell me yesterday…Caleb’s teacher is going to speak to the general education teacher to find ways to increase his inclusion time. Again. We are so far beyond “lunch, recess and specials” already that this will just put those bad memories completely in the dust.

I think maybe it’s past time to let myself truly trust his team again.

Now this is what I’m talking about!

Now this is what I’m talking about!

When I go on and on about the changes we’ve seen in Caleb since starting the STX 209…this is a perfect illustration of what I’m talking about.

Yesterday, after a long day of school and work, we got home. We followed our normal (read: insane) getting home routine which involves everyone getting upstairs, getting jackets and shoes off, getting Tucker out so he doesn’t make a mess in the house, getting naked (Caleb only) or changed into pajamas (Money only, Daddy doesn’t play along.) It’s a big flurry of activity with Caleb yelling out commands for us as he works through the steps.

This is all routine…habit…after almost 9 years he has got this down. But yesterday when we got home I could tell by Tucker’s bark that he needed to go out NOW, so I raced straight to the back of the house dropping my purse and coat along the way. I made it by the skin of my teeth and when I got back upstairs I was a little short of breath. And perhaps a little hormonal1. So I wasn’t at my most accommodating.

About the 47th time Monkey asked me to hang up his coat because he can’t reach (and we still haven’t put up a hook so he can) I might have snapped a little. I might have looked at him steadily (he is making AWESOME eye contact these days) and said very quietly (in that Mommy-is-this-close-to-losing-her-mind quiet voice)…”Caleb. Mommy is busy. Hang.it.up.yourself.”

He spun away from me and retreated toward the front of the house, he’s a very, very smart boy. I took a couple deep breaths, counted on my fingers and in an “A-HA!” moment realized I wasn’t a little hormonal…I was A LOT hormonal. OK then. I took a few more deep breaths and as I was getting back to normal I heard him return.

“I did it! I did it! Well done!” he exclaimed, half crying and signing ALL DONE with a nice exaggerated movements. This did not make my Mommy heart jump for joy, oh no, this made it sink to my toes. This was the kind of self praise he does when he knows he’s done something he shouldn’t have done. It’s a confession and a not so subtle attempt to tell us what he wants us to say when we see what he has done and an apology for how unhelpful it turned out.

This is the “I picked up dog poop with my bare hands but the floor clean!” self-praise. The “I put dirty dishes in the dishwasher when it was full of clean dishes” self-praise. The “You might want to get a picture of this for Facebook” self-praise. Oy.

I set off, trying to figure out what he could possibly have gotten into in 45 seconds. The dogs were still out, he hadn’t been in the bathroom…or the kitchen. Where was his jacket?? I looked around the living room, doubled back and checked the dining room, glanced at the kitchen and dismissed the idea…he wouldn’t throw away his coat…

“Caleb, where is your coat?

“I did it! Well done!”

Shit.

He walked around me and out into the hall and came back carrying his stool…the one from the bathroom. I hadn’t even seen him go in the bathroom. He went and put it away while I walked over to the front hall. I looked, expecting at best to find something like…oh…this.

BTW, in case you are wondering, that isn’t my size…

But there was nothing, and his little orange coat kind of stands out. I began to turn to go back into the living room and glanced in the closet and was totally and utterly floored by this…

Do you SEE what he did there? He hung up his coat. He couldn’t reach so he grabbed a stool from the other side of the house. He couldn’t get the jacket to stay on a hanger so he took a hanger down (the one with the inner liner of his coat already on it), looped the jacket over it and hung it back up. Then he put his stool away.

All because I told him to hang up his jacket himself. No prompting of steps, this isn’t something we’ve ever practiced. He just DID it…all by himself. He problem solved and DID it.

THIS is what I’m talking about…this is what this medication has given to him and to our family.

  1. TMI, I know. []
Once again, I am reminded of what it means to have a community.

Once again, I am reminded of what it means to have a community.

width="150"Yesterday, I put my fragile X carrier anxiety on full display for you1 and once again I’m reminded why my life has been 100,000,000,000 times better since I’ve become involved in the fragile X community. If you didn’t read the comments, you should go back and do that.

To sum up…this was about my fear, not Caleb’s. I should prepare him in advance with a social story (a handy copy of one to modify was e-mailed to me even), I should invite some of his friends, I should not let this hold me back, I have to keep trying, someone volunteered to go with us and I was reminded that even a small victory is still a victory.

Oh, also, I was provided with my newest favorite mantra…

Turn your fear into fierce! <3

How awesome is that?? Thanks Angie!

This is exactly why so many of us refer to the fragile X community as “the coolest club no one wants to join” or comments that if it had to be something, that we are lucky it was fragile X. I cannot think of any community that is as close and as supportive as this one.

I love you all! Thank you, thank you, thank you!

We’re totally going for it. I do have to say I’m pretty shocked though that no one suggested alcohol or Xanax for me beforehand 😉

  1. I hope it was more fun for you than it was for me! []
I’m not always that brave.

I’m not always that brave.

I’ve been having an argument with myself for several weeks. The circus is back in town and Caleb wants to go. He asks to go to the circus several times a week and I keep telling him, “Not today.”

He no longer remembers his first trip to the circus, how could he…just look at him!

He wasn’t quite 3. We knew he had fragile X but I don’t think it had fully set in what this would mean for him…for us. We still thought we could make a decision to go to the circus, sit through the show with friends and their little girl, and then go home with an overpriced light saber or inflatable animal on a stick.

Caleb didn’t make it through the door before the tears began falling. I think the first notes of the introductory song were played before we ran. Maybe not. He was crying and miserable. We were miserable and shocked. We stood outside for 45 minutes in the cold hoping to get him back in the tent, then we left for home feeling bruised and raw. Never again, we agreed.

Now, six years, later we have a little boy who thinks a circus looks like fun! He even went to one happily last year with his class. Why on earth would we not take him this time? Because last year his class scored tickets to the single sensory friendly circus performance in the 6 week run…this year they did not request them early enough.

This year there will be no Circus of the Senses, this year it’s full on performance or nothing. Eric and I were pretty firmly on the side of “nothing” but I’m wavering. Yes, it’s a lot of money…to sit on an aisle, near an exit, away from the band will cost us $100/ticket. If you have kids with fragile X or autism you know that these aren’t “wish list” items but requirements. Yes, it might be a total failure, we might not even make it through the door at all this time. But he wants to go and I hate saying no to him if I can say yes. Not because he’s spoiled (though you may have a valid argument for that) but because he doesn’t ask for much…and because I never want to be the one standing in his way.

But this is still a no…that he wants to go is enough to make me feel like an ass for saying no but it’s not enough to erase that memory of the red faced, crying child who was arching his back in a frantic effort to escape while Eric and I held him tightly. I keep telling myself that he doesn’t really know what he is asking for, it’s not the quiet, lights up version with all of his best buds.

As logical as that may be, it doesn’t stop my heart from breaking every time he looks at me smiling and says hopefully, “Circus?”

A poem.

A poem.

As much as I love reading, I’ve always been pretty *meh* when it comes to poetry. There are a few I love but mostly…well…I’ve really only read poetry when it has been assigned for school…well except for that “Welcome to Holland” poem which was assigned by my genes. (Srsly, it’s required reading for “Welcome to Special Needs Parenting 101” I hated that class.)

One of Caleb’s classmates has changed my opinion of poetry forever…he wrote an ode, which was shared with me yesterday.

Caleb

Oh Caleb, I feel gratitude for your friendship.
Oh Caleb, I like to play beanbags with you.
Oh Caleb, I like to make you laugh.
Caleb, when you are happy, I am happy.
Feesh!! Feeesh!!

I will never again doubt the power of poetry, this poem brings me to joyous tears every time I read it.

The young man who wrote it isn’t one of the kids who Caleb was drawn to immediately. This is a friendship that has developed slowly, day by day, but you cannot deny that it is friendship in it’s purest sense. It is a friendship based on this young boy’s generosity of spirit.

When I wrote the post “For the parents of typical kids” this is precisely what I meant when I talked about what typical children gain from being in class with children like my son

“They will learn to be a true friend to someone. They will have a chance to learn that different isn’t bad, that different can be pretty freaking fun, actually…In short, they will learn to be awesome.”

I’m not sure that “awesome” is a big enough word to describe this…I’m not sure there is a word big enough to describe it at all, in fact.