Clouds, May 2010

Clouds, May 2010

Sunday, November 22, 2015


They sure do like their routine & they'll let us know it. And when they're hungry they have zero patience & very big appetites. They don't really give kisses but they both love hugs & joint pressure massage-- it is almost humorously uncanny how much they both crave sensory input.

They do not like being outside in the cold-- despite enjoying that temperature when it comes to drinking water, which they both require A LOT of. Yet it's clear they both significantly prefer playing in dirt versus snow any day. They can be super stubborn.
In theory they could both use a leash when we're out & about. And inside, unfortunately they're both very good at making crumbs but neither one of them is any good at cleaning them up.

Don't even get me started on timing-- they will both inevitably need something as soon as I'm busy. And every time I come home with packages, they will both think I have something for them. I don't know where they got that idea from.

Going to the bathroom is like an accomplishment-- one of them expects a biscuit & the other one feels the need to make an announcement. It seems they both interpret getting their nails trimmed as some form of medieval punishment. They both go nuts if UPS comes to the house, or there's any sort of loud truck coming up the road. Neither one of them is fond of cats, either. Generally speaking they tend to make enough noise to shoo-away any animal in or near our yard.

Despite the fact that they both have beds,
alf the time they sleep elsewhere on the floor. Usually they are both eerily quiet sleepers, & I find myself checking to see that each of them is breathing. But they do not like to sit still for pictures.

Exactly one year ago today on November 22nd of 2014-- during what was supposed to be a mere visit to a pet rescue center-- a foster parent walked into the adoption center with a dog named Sammie. She knew we were there to meet her, but not knowing any more than that she instinctively offered the leash to Hayden.

My son, who would typically be described as nervous or stand-off-ish around most dogs, simply accepted the leash without any hesitation. 

I was so shocked I took a picture:

Next thing I know I am writing a big check, & looking down at a packet of paperwork awaiting my signature...

"I hereby elect to adopt the dog listed above...". The name written on the line said "Sammie".

Before we could even walk around the pet store to purchase food & other basic supplies, our son started to leave. With the dog. 

Fast-forward a few minutes after that & Hayden was seated next to his new companion & we were on our way home.

A year later, as I look back on those pictures, I can see when she walked how her tail was drooping much lower than it normally does. And I notice a distant look in her eyes that I would not have noticed at the time. So much less expression on her face, versus the way she looks in our eyes now.

But even then, when her foster person left the pet center before we did, she did not cry for her & try to pull Hayden towards her. So she may have been confused, but at the same time it was clear they were both ready to get to know one another.

And a year later they sure have.

Happy One Year Adoptiversary, Sammie!

Even though you weren't a puppy anymore when we got you, we hope you'll be with us for many years to come.

We love seeing your white-tipped tail waving behind you...


Monday, November 9, 2015

a message

Less than two weeks ago H participated in his last elementary school Halloween parade. Next year it's on to the middle school (I refuse to call it Junior High) where they do not have much celebrating in terms of holiday parties. So this year his moving guy costume was his idea (which I think I mentioned in an earlier post), because he wanted to reincorporate the hand truck from last year's UPS costume. He looked great-- Pop Z scored him a shirt from an actual moving company, he had work boots & jeans on of course, a back brace (borrowed from Pop Z), & fingerless black gloves:

After the parade around the field, I stopped inside the school to visit his class party.
Two moms approached me to say how wonderful they thought it was that I spoke with the kids about fragile x several weeks prior. One mom in particular had a true, genuine passion in her words & in her eyes. I expressed my sincere gratitude that she shared this with me, while trying my best to hold back what otherwise would have been an emotional reaction. That was three times this year including the one other mom who had emailed me. Makes me extremely grateful that both parents & students continue to be very receptive & I pray that never changes.

Generally speaking Hayden has been a bit of a handful lately. I know that any young kid is constantly growing, & developing, & changing. At Hayden's age the hormones & hyperactivity are likely doomed to increase in the next several years. Not to mention we have that upcoming transition to middle school next fall. He will be moving out of the building that has been his learning environment since 2008. It is going to be a very big deal.

We are already working on a transition plan, & all around revising his treatment plan as well. At school a behaviorist will be working with his team to help him learn self-coping techniques when he feels overwhelmed, & outside of school we are working with his developmental pediatrician to refine his medication to the most appropriate regimen for our growing boy.

But in the interim situations basically make me feel drained sometimes. When that X gets the worst of him & he is angry or hyper, or in general clearly not in control of whatever he's feeling-- it just breaks my heart. He is fully aware of these fluctuating moods & wanting so much to not feel that way. That part is obvious. This morning I don't even know what set him off-- I can always find something to blame it on if I try hard enough or force certain details into being the scapegoat if you will. Could have been that initial return to school following such a choppy week with early dismissals & days off during teacher's convention. Could have been a residual effect of a new medicine we tried over the long weekend. Could have been both or neither. But it doesn't change the fact that I can barely react to his misbehavior because then he will not follow through with his morning routine. So if he's cursing at his iPad while eating breakfast, I need to remember that at least he's eating. If I dare to interfere when he's already worked up it will not do any good. I have to keep my cool & when necessary, address the behavior later. It might even be much later in the day, but he's old enough now that he'll know & he'll remember.

This morning when it came time for him to leave I carried his backpack to the door like I always do, helped him with his shoes & jacket, & off he went.
I don't even know how I stopped myself from crawling back into bed after he finally left for school. Hands down one of the toughest aspects of my week is getting myself to the office every day. What can I say-- the relief of seeing him off when he's actually calm, will in turn make ME so much more relaxed that I am ready to rest.

The evening was somewhat better than our morning, that is, until Hayden decided he wanted to play his keyboard. He only recognizes two volumes-- either all the way up, or off. And he doesn't seem to understand that pressing the keys slower is not the same as playing quieter. We were finally about to take the plug away (much easier than attempting to grab the whole keyboard from him), when I got a message from someone at school.

I have to relay the story somewhat anonymously, but here is most of what it said:
"Mrs. Capela, I've got to tell you what a special young man you have and how he touches lives in so many ways throughout the day. Today while we were doing the recycling a lady in the office was crying. Hayden put down the bin of recyclables and took off into the office. I followed and he walked up to her and hugged her as tight as he could and said, I'm sorry about your mom! She cried even more and smiled and told Hayden what a difference that made in her day! He then carried her very heavy bag to the door for her and told her to have a better day! Needless to say he is extremely precious to all of us! Thank you for such a beautiful soul."

The scene in our house was quite tense before I saw that message. It was the end of the day, we're tired, we have the whole week ahead of us & he was just being so very loud. But I saw that message & thought about what the Dr said at our last follow-up (the one who prescribes his medication), & she brought up the fact that the people who work with Hayden sound quite tolerant. In other words, something to be conscious of before next year's transition to middle school.

Maybe they are tolerant. But they've also known him for such a long time that they're like family. They don't exactly let him get away with things, but rather they know how to help him through his day. When I looked at that message a second & third time I thought well, when Hayden's home he knows that we'll carry his (often) heavy bag to the door for him. So at least his genetics do not interfere with his ability to recognize the gestures of those who care. And equally important, he wants to reciprocate.

I am grateful for these moments because they remind me that his fragile little x chromosome is not strong enough to win all the time.