Love is…

Love is…

 

Love is flowers (the same flowers I carried on my wedding day), my son writing Mom (even if he started with Mooo), my husband’s delusions (I suppose I could be the best wife ever but that really makes me wonder about the rest of you) and cinnamon buns (from Pillsbury, if you know my husband you know how much that hurt him to do.)

But those are just signs of love for that one day.

 

 

 

 

 

 

 

 

 

 

 

 

 

Love is also the every day stuff…the smile on my son’s face when he sees me, letting me decompress after work so I can act like a decent human, it’s sitting in a waiting room while I visit my dr. because I’m too anxious to go alone and it even comes in pills.

I’m a very fortunate mom and wife. Thank you sweetheart for making me feel loved every single day!

 

 

 

 

 

 

 

 

 

 

I knew better.

I knew better.

Yesterday I mentioned this sleep app called “Sleep Cycle” that we are going to use to track Caleb’s sleep. At one point I said…

This one doesn’t look too bad

Ohohohoho! Did any of you laugh wildly when you read that and thought….”NOW YOU’VE DONE IT!”?? No?

I didn’t, I was too busy being chipper and happy and all as I moved toward perfection. I could even hear little birdies chirruping sweetly as they flew excitedly around my head. Ugh.

So this…

turned into this…

Yeah, I know, it’s a marked up version I made using “Paint” because I forgot to send myself the chart this morning…Gosh, I wonder WHY??

Next time I say anything positive about how Caleb sleeps, please…please…just remind me I’ll need an extra cup or two the next morning to wash the taste of crow out of my mouth.

All is still not exactly perfect.

All is still not exactly perfect.

Eric and I had an interesting IEP meeting yesterday. We are still having meetings every 4-6 (mostly 6) weeks, per his IEP, even though I’m not sure we need it now. Things have been going so smoothly with his team. We love his teacher, the aid, the specialists and the school. LOVE them! The communication we have with his teacher is terrific. If something is going on that we should know about, we hear about it immediately. Plus we get tons of cute stories.

Let’s start with the good stuff…

1. They are all so impressed with how social he is…he’s a social butterfly this boy…

2. They are seeing how much better he performs when he’s in a group with peers rather than 1:1 with staff…one example…the PT struggles to get him to demonstrate skills for evaluations even though he uses many of the skills in Gym class as part of games.

3. He is more motivated by real world activities than table top activities. Example, he will unsnap his own coat with much less whining that he will unsnap the snaps on the manipulative his OT has been using. Notice I said “less,” he’s still not a huge fan of those fine motor activities.

4. He *loves* his Assistive Tech specialist now that they have switched to an iPad rather than that VantageLite he hated so desperately. And he’s using it with much less resistance.

Most of this is pretty standard FX behavior and  so we were able to share some ideas that we’ve picked up from other FX parents.

The BEST part of the whole meeting is that since he is demonstrating how well he does with typical peers, they’re going to start integrating typical peers in some of his pull outs. Anytime I hear this it gives me warm fuzzies…I do so love any effort to involve his school community and peers more! It really makes the first 5 years of struggling to maintain integration totally worth it.

Now…the not so good stuff…

He’s struggling emotionally. We are investigating the why but for the last month or more he’s been crying at school more and more often. And the bouts of crying are lasting longer. It just breaks my heart to hear that, especially since they’re trying so hard to find out ways to break him out of those episodes but the old ways just aren’t working. He’s not responsive to his peers during these times and his teacher and class aid also can’t bring him out of the funks. My poor baby.

We have theories…lack of sleep (he’s been having nighttime wake ups again) or anxiety (I hate this part of FX!) top my list but they are doing an FBA to see if they can pick out a pattern.

The sleep thing is really just a theory. We have no idea how often he is waking up since he’s now staying in his room to avoid setting off the motion sensor which wakes up Money (and sometimes Daddy) which results in an immediate return trip to his bed. Smarty pants. In the car on the way to work I mentioned maybe we should do a sleep study but…yeah…I’m not ready to sign up for that torture! I recalled that a neighbor had used an app once to track his sleep on business trips. After a little investigation, Eric found one that will work on C’s iPad. We hid it under his sheets last night (it works by sensing movement). We will be getting graphs like this from it every night.

After a few days of collecting data it will be calibrated to him and his movements and we’ll be good to go for collection purposes. This one doesn’t look too bad, it looks like he fell asleep pretty quickly and slept until just before 5 this morning. He did not go back to bed then, he got up and it kept running until we shut it off.

As for the anxiety…we’re probably going to go back on the Celexa. I’m a little disappointed, I’d hoped that the study drug would be enough but it’s not at this point. I know all the researchers keep reminding us that the best treatment will likely end up being a cocktail but my ever optimistic heart really just wants the magic pill still. Damn it.

I feel OK overall about where we are at. Caleb’s language in particular has made huge gains over the course of the year which is so exciting. He’s doing really well on his speech goals, even the one his ST looked back on and thought she maybe shouldn’t have included because it was pretty ambitious, lol. And even though we do have this pretty significant issue of his emotional state, we have some good ideas to try. We have his 3 year re-evaluation next month so we will touch base with the team one more time before the year is out to see what we can figure out.

So, nope, my life still isn’t perfect *sigh* but we’re still reaching for it!

Wrapping up some loosish ends…

Wrapping up some loosish ends…

Three weeks ago ((Srsly, can it really only have been three weeks since the Marathon bombing??)), I wrote about our chance to take fragile X awareness onto the field at Fenway Park. You can see story here (Today.) I am happy to report that all went well and Caleb went onto the field as hoped!

He needed a little extra love to get there…

But he totally did it! He even gave Wally (the Green Monster) a high five on his way onto the field.

I am so proud of how well he handled such an extraordinary event…I’m also pretty excited that he got to go on the field at his very first Fenway visit! I’ve been there quite a bit more than once, toured the park down to the laundry room and STILL haven’t been allowed on the grass!

I do have a secret though…you cannot share this with anyone…I made Eric get me a little souvenir…

Even though it’s probably enough to get him banned for life from Fenway, though I may have left that bit out when I asked him to do it, he did it. Such a team player!

In other follow up news…the circus is this weekend. See that story here (I’m not always that brave.) and here (Once again, I am reminded of what it means to have a community.).

Two of the three friends we asked have confirmed, we’ll know regarding the third today. I cannot believe we are doing this but we’ve set the stage as much as possible. We have aisle seats, as far away from the band as possible and 2-3 of his very best buds who can get him to do just about anything. Piece of cake, right? I’m actually a little excited even!

It’s still pretty ugly up in there.

It’s still pretty ugly up in there.

I’ve had two more nights of weird and scary dreams, clearly they’re anxiety induced…in every single one someone is trying to hurt or kill me. Awesome. I told Eric that I blame the decision to run…clearly, running was a bad idea! Then my BFF had to go and point out that maybe they’re related to lingering anxiety over the Boston Marathon bombings. Duh. I knew in the moment that I was scared. I knew in the moment that all those feelings of being helpless and out of control in a big, nasty world would haunt me somehow but I managed to forget that “somehow” includes dreams. So, here is hoping that the clarity helps end the dreams. Pretty please? I’m tired of barely surviving my nights and it shows. Please take no notice of the chick nodding off in the corner!

In other happier news, we have done our 2nd family run and it went amazingly well! We used all new visual markers because we don’t want him to get fixated on any specific markers and he giggled his way through 2.5 miles of walking and running. I have never enjoyed running more than I do right now.

Caleb insists on holding tightly to my wrist. He runs in great big, galloping, strides alternately racing towards his dad or turning his shining face towards me. When we are walking he greets other walkers and runners, he offers high fives to a few and smiles to all. It is an amazing thing to run next to this boy and watch people watch him. It doesn’t matter if it’s a 70 year old woman, a 20 something drenched in sweat and running a pace I will never reach or a parent pushing a stroller…their faces soften when they see him and they’re smiling by the time we pass them. A few times I looked over my shoulder, watching for bikes or runners approaching from behind, to see people looking over their shoulders at him.

This child is a gift, I feel it all the way to my toes and my heart just bursts with pride when I see others, complete strangers, recognize it.

I’ve set myself a goal, either I or Eric will catch Caleb on video during one of our upcoming runs…you really just gotta see this…he might even make you want to run!

 

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 rings ((Mercedes, BMW, Lexus and Oldsmobile??)), spiders ((Oh, holy CRAP it was huge!)) and muggers ((He did not get my wallet, I screamed bloody murder.)) 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 wiring ((Please just act surprised by that admission, OK?)).

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 Surfers ((Thanks for the heads up Allison & Parker!)), 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 bad ((Very, very, very, very bad!)) 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!

 

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