Tuesday, June 25, 2013

So Far, So Good - The New TSS

    Well we have had the new tss for about a week and I must say its nice to have the help back again. This guy, let's call him "David," is really good with Xander. He likes getting down on his level and playing but when work time goes, he's all business (which Xander needs.)

    Today is our first trip to the lake with David to help me manage Xander. We are going to be working on swimming lessons. Because Xander can't so much as lean back without feeling lost and freaking out, getting him to relax enough to learn to move in the water is tricky. He loves to stand chin deep and splash and wants to go out deeper. The obvious problem being he can't swim yet and won't wear water wings, but is also too stubborn to agree to hold on to one of us to help tow him out deeper. He Must do it himself. I have no idea where he gets this trait from, (cough, cough...from me? what nooooo.... well according to my mother, he does but she's biased)

    I'm hoping for some success with his trusting us in the water by the time we go on vacation in August, but I don't have very high hopes considering that its 39 days til our trip. And yes I'm counting.
picture unrelated for the most part but because of a phone issue,
I don't have any new shoots, so this older one of Alex and Xander
with C3po will have to do!

    Being born and raised on an island has its perks, one being that I don't really recall learning how to swim. I theorize we were born with gills and somewhere around age four they simply faded away as real skill developed. We spend nearly every day at the beach from the time the temperature got above 65 degrees until well into the next school season. But Xander has never been a beach kid, despite living no more than 500 yards from the bay for the first two years of his life. He hated sand and while the waves excited him, the strength they used to bowl him over scared the crap out of him.

    But another perk to growing up at the shore is that no matter where I move, I can always "go home" for vacation. Our family and friends all get together for a big bbq party we host at my parent's house each year for Xander's birthday. And now that we live so far away, its our only chance to see some of our more busy friends or relatives. This year the theme will be dinosaurs (big surprise right?!) but that's proving to be a more difficult style to find, everything is superheros or disney characters and we've been there, done that!

    Besides the swimming in the ocean, I'm also a little curious to see how he reacts to the boardwalk and all the rides and lights. There's no sensory safe version of the boardwalk, that's for sure, unless you go midday when everyone else is smart enough to stay out of the sun or be in the water. But honestly, I see him being in stim heaven, as long as the crowds don't freak him out. There are milder activities, like bike rides, trips to the zoo and walks in the shopping districts, so I'm not all that worried if he doesn't do well with the crowds and lights.

   All in all, its nice to be getting back to a rhythm of the week and knowing there are people coming around to help that can be trusted. The vacation will be welcomed whether or not we have a sensory fit, we will just have to roll with his level of comfort at the time. I'm still intensely looking forward to it, it should be a blast!

Sunday, June 16, 2013

Google Search: Word For The Stage After "Burn Out?"

puddle stomping after all the rain these past few weeks
    Maybe its the heat or the fact that our son seems to be in a endless battle of endurance against the Energizer Bunny, but my husband and I have officially filed for "burnt out" status. We have had a series of bad luck with services lately and with worsening behaviors from the little man, have been feeling the affects more than in the past.

    Xander is filling in the gaps in his diagnosis; taking up echoing our speech, compulsively lining things up and still insisting on a blood curdling scream at the slightest hint of annoyance. Every day I go and get the mail, I pray that his new pressure vest will finally in that little black metal box, but its a pipe dream, just bills and junk mail. I have a strong suspicion that the company we purchased it from must ship via pack mule or take the term "snail mail" too literally. When in reality, it's likely that its just my mind playing tricks on me and being exhausted is just making the wait seem like an eternity.

    After the fiasco with the last TSS quitting a week early, the morning she was due in for a session via phone call to her BSC, who didn't receive the message in time to inform me of the sudden change (burnt out + fuming mad = glimpse at my state of mind this past week.) I'm looking forward to meeting our new guy today. He's older and more experienced, working as a high school teacher during the school season, so I hope my higher expectations are not ill placed.

   We are getting to crunch time as far as services are concerned, with Xander's third birthday closing in on us. We are in the middle of signing him up for preschool, though the class we had hoped to get him into five days a week is apparently full. The out patient services still telling us that after more than 6 months with completely open availability we are at the same spot on the list, so it seems unlikely that we will make it to the top by August. Alex and I agree that these factors mixed with the drama of the TSS issue is probably why we are feeling it more this past week, more so than the last few weeks. Plus I have a feeling that its the sort of thing that builds up in your system; small amounts of frustration and exhaustion piling up over time until suddenly you feel like you need to climb The Great Wall of China every morning to just get out of bed. We have it better than most, we know that and are incredibly grateful but that doesn't make the challenges any less taxing.

Saturday, June 15, 2013

A Sweet Moment: Exploring New Friends

(Sorry for the delay in posts. It's wonderful having a working computer again!)

     When describing Xander's demeanor to therapists when asked about social interactions, I always say he carried himself like a "little adult." I usually get a little chuckle and some kind of comment like "oh that's a good observation," or "I could see that!" He will often completely ignore any children his age or younger and his only interaction with older kids are usually acts of using them for sensory needs, (grabbing them, headbutting, pushing his body into them etc.) His interaction is also very limited with adults. He either loves you or couldn't care less about you, its as if you don't exist. He has picked a small group of adults, outside of his father and I, that he cares for and will only show them small signs of affection when he mood strikes him. Up until a few weeks ago that small group of people only included one child, a friend's little girl. The only kid Xander had willingly played with and tolerated shared activities with is little Miss Syd. But now we have a new little guy to add to the list: Mr. Bryson.

    Bryson and his mom, Lexi, a fellow whovian and mommy friend of mine, come over about once a week. It took Xander five months to warm up but the other day it finally happened. While us moms were chatting away in the kitchen, Bryson was still napping (we thought) in his carrier. Xander climbed under the carrier's canopy and by the time we noticed his face was right in the baby's. I, at first, panicked, thinking he was going to accidentally hurt the little guy but Lexi seemed very calm so we stood back to see where this was going exactly. Xander grabbed him by the head and gently (enough for a kid who can't figure out his own strength just yet) moved him from side to side. Then he smashed his mouth on the infant's forehead, kissing him much like the way I kiss him. I couldn't help but laugh. He ended man handling Bry's head for a few more minutes, looking him over and giving a few more kisses before walking away to explore a new thing, and only after he left did the baby cry, he was loving all the sweet unexpected attention. All of my worries that Xander would have been a distant big brother faded when I say him treating that sweet little boy like he likes to be treated. Granted he's still jealous as all hell and refuses to some much allow me to hold another baby but that will come with time. This interaction is miles better than his behavior towards my nephew just a few years ago when he would literally step on him because he didn't seem him as anything more than a "thing," with little regard for feeling.

    I'm grateful to have an understanding friend also. Most would not have been as accepting of the rough questioning nature of the "exam," but the fact that she understood my excitement, understood the magnitude of this tiny moment and rejoiced right along with me is rare.

    I'm confident if we could have made a bigger family, Xander would have made an amazing big brother. His curiosity and inquisitive nature would have made for an amazing role model, making them both into little trouble makers... So perhaps its a true blessing he's an only child. I have my hands full handling one trouble maker, more and my hair would start falling out!

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