Random

* tylenol with codeine is a lovely chaser to two valiums – this discovered after invasive oral surgery.

* this trendy full beard look on men has got to go.

* still not unpacked; construction ongoing. 4 weeks and counting. My guesstimate is 6 more weeks. The
new master suite however, will be stunning.

* I’ve discovered that yes, Smacky and I somehow sleep quite nicely together on a twin. Twin bed, that is.

* when your home is in total chaos with boxes everywhere and men barging in every two minutes for this or
that it’s hard to get things anything done.

* the twins qualified to remain in Early Intervention. I love this.

* Smacky started with his new PT and she is amazing. She works him hard.

* speaking of, Halloween is an absolute nightmare for spectrum kids. Smackeroo wants no part of costumes, trick or treating, or candy corn this year. On the other end, the twins can’t decide if they’d rather dress as Diego or chickens or Mickey Mouse.

* Z rode a horse with me over the weekend. I was quite proud of him.

* it is freaking cold here.

* pumpkin fest tomorrow, coffee with a friend, then helping MIL arrange some of her stuff downstairs in her
new room.

* can’t find the box with the winter coats.

* I’m fairly late to the Lady Gaga party, but I so love her.

* why have the twins been waking every night at 3 AM raring to go?

* can’t wait to get to sleep on our new Tempurpedic.

* Jon Gosselin looks like hell. Kate, on the other hand, looks amazing.

* If I hear the word “flu” one more time…

* still no job.

* I’m quite tired.

Falling

Can I just tell you? We found an awesome private PT for Smacky and she is actually covered by our health insurance plan!! We start the week of the 12th – he’ll start with one one-hour session per week and we’ll take it from there. His school informed me this past week that they’ll actually be reducing his time in gross motor group and I hit the roof..the PT (who I actually really used to like) had basically told me in a conversation that even though Smacky falls during play, the fact that he’s having fun is what counts. UM, NO. I know she’s trying to get me to accept his situation for what it is, but I see it differently – if we can do more and make it fun for him, THEN WE SHALL DO MORE. I personally don’t believe that accepting a treatment plateau which allows for him to continually fumble while walking is prudent…sheesh. And I don’t think that makes me pushy. If I give up on my kid, what message does that send to him? Nevermind the fact that he’s constantly bruised and hurt because of it (“all kids are at that age” is what she tells me). Here’s the thing: I’m not being hysterical and I’m tired of not being taken seriously. Ay chihuahua – why do these people have to force my inner bitch?

Anyway, I shared our plight with the twins’ early intervention OTs who quickly linked me up to this new private PT and I’m so excited to get him started. She acknowledged sensory issues. She’s well-versed in ASD issues as well as femoral anteversion. She talked about everything she can do from his head to his toes to give him better strength and overall balance. In short, she was a breath of fresh air – all about “can do” versus “he’s fine.”

So another issue has been wrapped up (at least temporarily). There are many more to address, but this one weighed heavily on me. Now, on to tending to the camp that is currently our home (maybe we’ll have a bedroom in 3 weeks???). ‘night.

I Love Our New Mess

We’re in. The addition isn’t nearly complete; we’re sleeping on an air mattress in Smacky’s room. We are surrounded by tall stacks of boxes that can’t go anywhere until the master bedroom is ready…the contractor says it will be done in about three weeks, which really means six. In the meantime, for survival purposes I’ve had our new washer/dryer hooked up, so it’s not all camping around here. But still.

Emotionally, everyone is very happy despite the mess and limbo. The dogs haven’t had one accident. The kids are surprisingly relaxed and enjoying the new surroundings. The ILs have been patient and optimistic. And I have to admit that the sense of relief I feel for being here is great. We are no longer house poor. I can actually shop at places where I like to spend a little money again. We can actually afford a private therapist to help Smacky along with his walking and balance issues. I can get my hair and nails done without guilt. Don’t get me wrong – this situation has definitely changed my view of the world and I can’t imagine that my new sense of frugality will go anywhere anytime soon. But it’s a wonderful feeling to know that if we need something or just want it really badly, it’s doable. It’s no longer a drama. We can’t entirely relax just yet, but we can finally sleep. And that was the point.

Pics of our new mess are forthcoming.

A whole new shade of awful

Things truly have been far too crazy but I sort of feel justified in taking a little writing break for this. Yesterday I found out that a newer friend of ours, a parent of one of Smacky’s classmates, had passed away this summer. He was 39. He left behind his wife and one son. We were away at the lake when it happened. When I saw T, his wife at pickup yesterday (first day of preschool) I greeted her enthusiastically and told her I missed our talks and how was the rest of her summer??? Oh, my blissful ignorance.
Her face, hidden behind big dark sunglasses, was rigid. She paused.
“You didn’t hear?” she asked.
She didn’t have to tell me. I figured it out in an instant.
J, her husband, had killed himself.

J, like S, was a former executive riding high on the waves of the old economy. Like many of us, he rewarded himself for his hard work with high end cars and a sweet home. He never anticipated the bubble would burst as hard and fast as it did. To help handle their debt, T abandoned her IVF pursuit for a second child and went back to work. While she worked, J handled the pickup and drop-off of their son, C, and attended most of the birthday parties, including Smacky’s. J was tall, confident, good-looking, with strong social skills. He was chatty and pleasant and fun to be around. He was concerned about his son’s development and loved him ferociously. He’d usually arrive at dropoff before most of us – he’d be at the door on his cell phone while C toddled around his legs. He greeted everyone with a smile. A few times I met his mom – a gentle woman who was a doting grandmother. Their family was well-known, and they were part of our community. He was one of us.

T would confide to me how J being out of work drove her crazy. To this, I could certainly relate. She felt resentful that her dream of having another child (she’s 41) was put on hold while he marinated listlessly in his bruised-ego depression. To us, he’d put on his game face. T, on the other hand, lived with his less amiable, less likable side.

Frustrated with his reluctance to get help or seek counseling or find at least some type of work to keep him busy, T asked him to leave in an effort to get him to see the seriousness of the situation…that he could no longer drain his wife or son with his issues. He went to his mother’s. That was the update the last I spoke with her -until yesterday.

J offed himself about 2 weeks later.

I’m shocked, but not. I’m miserable for her and her son. She’s angry, still trying to clean up the financial mess he’s left behind. Frail and tired, she sobbed into my shoulder in the parking lot. I sobbed back. I apologized for not being there- I had no idea. She apologized for not telling me – she’s been in a state of shock.

I saw her again today and my eyes teared up again – I don’t know what to do for her other than to reassure her that help is just a phone call away. She seems grateful, and acknowledges that time will help her learn to cope better. But still.

I’m open to any words of advice from those who’ve been there. Tragic death is horrible, but somehow suicide tints it a whole new color of terrible. It just makes me speechless.

9 more days of caffeine

Packing with three young children is, for lack of a more creative description, insanely difficult. Smacky’s on board with the upcoming move but the twins, who can’t understand yet, have no clue why the giraffe is no longer on their wall. “Giraffe fall!” they tell me as they point, and I remind them that Giraffe is in fact in a box and will be coming to Nonna’s house with us and will go up on their new wall. This explanation does little to deter them from checking behind their cribs to make sure that Giraffe didn’t somehow get stuck behind there. Every morning they wake up to a house which looks a little barer than the night before, and I am certain that this has been stressing them out. Our two very active very physical two year olds have become mighty clingy which makes getting anything done while they’re awake close to impossible. SO, suffice to say it’s been tough.

We move on the 17th. That’s in what, 9 days or something like that? Yeah. Wish me luck.

I’m aware I’ve got some housecleaning to do here around the blog(s) and for now, let’s just leave it that I’ll get to it. There are links to be put up and old files to be backed up and shuffled around and categorized and whatnot – I’ll get to it one of these days.

Holy cow! Three weeks!

We’d been going back and forth through our broker with this individual who continued to toss us lowball offers on our house. After agreeing to come down a full $40k off our asking price, he still wanted to know what we could do. I told our broker if he ever requested another showing we would charge admission…after a while, this all-about-the-bidder thing gets old. I know it’s a buyer’s market and have every respect for anyone just trying to make their own bargain and feel good about having negotiated to the fullest on one of life’s biggest investments – I really do. And I’m not one to get emotional about business transactions – a house, just like any other salable product, has a range of objective fair value. But this just went on and on with his demands and I finally told the broker to cut all ties – it simply wasn’t worth it.
After two days worth of blissful quiet, he came back. To a figure we could live with. And agreed the home inspection shall not be used for further negotiation. I told our broker if he dared ask for a thing more we will shut it down. Then he asked for all appliances. And our outdoor playset. I agreed on the appliances – not the playset. The home inspection is tomorrow…God help us with this tool. He’s paying cash however, so I suppose that’s one less headache. But still. Closing will be in three weeks if all goes well from here. Holy cow – this appears to be really happening.

I’ve got to get those moving boxes out…here we go!

I-I-I-I-I-I think it’s time for a glass of wine

About two weeks ago to the day, Smacky told me in an assertive and ascending tone: I-I-I-I-I-I want to go to the beach today!! I paused, thought it odd that he spoke in such a way, and proceeded to tell him that yes, indeed, we’d be going to the beach that day. A little later on he began another sentence about his brother: He-he-he-he-heeeeeeeeeeeeee stepped on my foot! Better keep an eye on that, I thought to myself, and didn’t mean the stomping brother part.

Since that day it’s gotten progressively worse. What’s heartbreaking though, is that he knows. He’s embarrassed by it. He’s taken to speaking now exclusively with this hand near his mouth, as if to try to stop the stammering. I can’t help it, he tells me quietly. It-it-it-it-it just happens. It makes me want to hug him more, and I have. Nonchalantly I’ve assured him that lots of people get stuck on words, and it’s okay. School starts September 10th and will be here in a snap, but when it comes to getting support with this, it feels too far away. In the meantime, I’ve googled and researched and have found that stuttering with ASDs is common. And fortunately, my outwardly devil-may-care attitude toward his disfluency has been the proper approach.

Every time I start kidding myself that maybe he doesn’t have an ASD after all, something reminds me that he does. And really, it’s about him, and shouldn’t be about me at all, but damn. DAMN. I am overwhelmed with the time I spend advocating for this child, and yes, blah blah I know we’re lucky he’s so high-functioning but may I just vent and blurt out a nasty, potty-mouth WHAT THE FUCK? There’s no manual for this – there’s no way to articulate to those on the “typical” side how gut-wrenching this is – how watching your child struggle with seemingly EVERYTHING is so wearing on your psyche, or how every decision made on his behalf feels so weighty.

In two weeks Smacky’s slated to start T-ball with all mainstream kids. I am terrified for him – I worry he’ll fall every time he runs, or will freak out at his turn at home plate, or now, get teased for stuttering. But I can’t shelter him forever, and know that every positive new experience will bring him confidence and enforce his will to push himself further. So I put on a brave face and remind him he’s a powerful, talented, and an amazing force to be reckoned with, and practice with him in the yard while I will us both to relax and enjoy. I realize he’ll feed off my energy, and for his sake need to present as positive and certain about his abilities. But how do you handle it when you’re so worried you’re inadvertently throwing your son to the wolves? How and when do you know it’s right to gently prod your special-needs kid into mainstream experiences? I’m a wreck over it – worried that doing this could set him back and harm his progress and his fragile esteem. How am I supposed to know he’s ready to try “regular” things unless we actually do it? I don’t have that radar yet…let’s hope it comes soon. Until that happens, I suppose I’ll just start imbibing. And start learing to trust that between us, my son and I will figure it out. Eventually.

GAH.

Bittersweet summer

August has been a nice month…I say nice, because though we’ve been enjoying ample time together as a family – mostly in the paradise we call Lake Winnipesaukee – the contentment and joy is dampened by the reminder of our finanical troubles. It’s no secret anymore that S has been out of work for a while now. It’s not comfortable for him and the acknowledgement that yes, SO many of us are currently in the same boat doesn’t do much to take the edge off. I feel like I’m used to it now – in fact so used to it that I no longer worry. We’re doing our best to downsize and keep as many options open as we can and beyond that, have to accept that life will hand us what it will. Right now it feels right to focus on my family, on my relationship with my husband, and on my health. I don’t want to be anxious or dwell on the checks and balances. I don’t want to mourn the loss of our home – the icon of the American dream (to be clear: we are not foreclosing…we are selling before we lose all of our savings, damage our credit, and sacrifice our dignity).

A sweet upside to this is the buildout of our new digs, and earlier today I met with the contractor to design our new bedroom suite and it felt good. For reasons unknown to me the fact that I’m moving 2 adults, 3 kids and 2 labradors to a home just about half the size of our current residence somehow feels right and good. For some reason I’m kind of happy we need to give up this house that I love. I’m not sure if it’s the promise of a simpler life, of being close to family, or what. My ILs and I have had longstanding issues, however after they offered to give up half their home to give us stability things changed…it was almost like a healing took place. We talked like adults about boundaries. FIL, who has been officially diagnosed with brain atrophy (dementia), is slowly becoming more frail and out of it. MIL is not only excited and accomodating about our arrival, but is fighting to make sure our home renovations are the best they can be. Just this morning I overheard her urging the electrician she needs better lights in here – this side of the kitchen is too dark – I don’t care what it costs – we need to put more lights on this side..my daughter in law needs a nice bright kitchen. To say we’re lucky to have such family is an understatement – whatever they may have delivered in the crazy department in the past, when the poop hits the fan they come through. And not everyone can say that about their people. Whatever happens, we know we will never end up living in a car. Or in a tiny apartment. Or hungry. And that alone makes us very lucky.

As I keep preparing our current home for various showings and negotiate offers to impasse, I find that I can’t wait to move on. I can’t wait to design and get in to the new place and make our things fit; I can’t wait to settle the boys in and get our new routine going. I don’t care what the neighbors may think. I don’t care that we pretty much have to start over. I care that once the job issue resolves itself we’ll be able to afford our lives. We’ll be able to afford tuition for three kids and the insane monthly food bill that goes along with them. That when S begins traveling again, I’ll have instant help downstairs. I care that we can start taking vacations again. And afford Smacky’s therapies. Of course, the promise of very yummy leftovers doesn’t hurt, either. There’s acreage. And a pool. And woods and good neighbors. All here in the same town. Perphaps I’m being Pollyanna but that’s how I cope…it just doesn’t seem so bad to me. But the I hope it will be all right feelings still haunt me, and it’s tough to banish them – even if the sun is brilliant and the water warm and clear and your kids are giggling in delight.

1/2 a decade of hope

Five years ago today I began blogging.
It has been quite the five years, hasn’t it…I began writing here feeling like a beaten, tired soul. Sick of being sick, tired of being tired, and fed up with what felt like always being on the wrong side of the odds, I wrote and wrote and let it all out.

And, consequently, I met all of you. You gave me hope, and soon I learned that if we perservere through the muck we might just indeed get whatever it is we’ve always wanted. I got that and more. So much more.

At the end of the day, whatever anyone takes away from sharing my experience (and 783 posts), I want it to be hope…hope in knowing that whatever it is that’s now shaking you will somehow pass – because we all get shaken…all of us.

Here’s hope in a photo:

Three weeks ago I swore I’d never get this child into the water without him screaming. Then, on this particular evening, he asked if he could “go in” with his clothes on, and then jumped into the lake as if he’d done it a thousand times before. He tried his hardest to swim. And he didn’t want to come out. He then told me that in the water he didn’t have to “W sit,” and he didn’t feel like he was going to fall. He told me it felt really good.

I’ll be pulling the plug on the old blog in a few days (so please bookmark here if you haven’t already).
And if I haven’t said it already, thanks for coming along for the ride…you’ve been fantastic company.

It’s hard to get used to

Tomorrow morning at 9 am we expect 6-7 people from here to descend upon our home and poke us, play with us, and prod us for 6 hours in the hopes of gathering information which could shed light on possible genetic origins of PDD-NOS. We agreed to participate in this huge research project back when Smacky’s diagnosis first came and they weren’t kidding when they talked about 4 hours of paperwork and 4 more in phone interviews. After tomorrow, the bulk of the work will be done, and we can expect an insanely detailed report in a few weeks outlining their findings relative to his behaviors and diagnosis, which is the equivalent of second opinion gold when you’re trying to fight for services. To be honest, part of me still hopes they’ll somehow decide you know, he’s really not autistic…we don’t know what those other doctors were thinking. And yet, the other part of me already knows…the other part of me lives with the flapping and the flicking – the fact that he can’t stand up for two minutes without falling down. That and the constant reciting of mathmatic equations under his breath and singing the alphabet backwards. And the uber-preoccupation with all things semantic and time and order. I know what these behaviors mean. And yet, socially, he’s fortunately strong. This last bright part seems to trip up everyone, including myself.

I suppose we’ll see. You’d think I’d be used to this by now.
I’m not.