Tag - change

July 3: An Anniversary
Treading Water
When Life is About Breakfast

July 3: An Anniversary

It’s hard to believe that it’s been two years since our lives turned upside down. Two years ago, tonight, our house caught on fire and sent our little family into a four-month tailspin.

The boys slept through the night before the fire. John always had issues, but his episodes were the exception, not the rule. Back then, we felt crowded in our house, taking it for granted — maybe a little ungrateful?

As summer turned to fall, we moved from hotel to a stay with family to an apartment — waiting, waiting, waiting for our home to be repaired. Those days were electric with insomnia, with a frustration so immense it nearly swallowed me. I began to pine for my house, driving by it each morning to see what had been repaired, and quickly realized how silly I was to bemoan its size. It was perfect!

Would John’s sleep issues have escalated without the disruption to our lives? My guess is probably. Would he have started talking as much as he first did that summer? I don’t think so, I think the chaos our world became forced him to look for other ways to communicate.

Tonight as I chopped strawberries and blueberries for our 4th of July picnic, I remembered how I slaved over a potato salad two years ago. I remembered how it remained unfinished on the counter when we were forced to vacate. I remembered how hot it was and how irritated I was by my kitchen of all things — it seemed so small. I remembered and relived it all tonight.

The biggest lesson from those days is we go on. Even when things were at their worst and I didn’t think I could bear it one second longer, we managed. What other choice is there? In some ways, it’s just like getting an autism diagnosis. At first you don’t think you can bear it, you pine for what you thought might be — but you learn, you adapt — and one day there you are: in your home, watching your boys play and you feel lucky.


After sixteen weeks and four days, we moved back home. It took nineteen weeks and four days for the first uninterrupted night’s sleep. It’s happened twice so far, and while I’m not holding my breath, each day we’re back it seems a little easier, the boys seem a little more sure we’re home for good.

I know I’ve been gone from my blog for far too long. Getting settled again has taken time — boxes and boxes to unpack and resort. Every article of clothing we owned was whisked away after the fire and professionally cleaned. It all returned neatly pressed on hangers under plastic. I’ve had to come to grips with the fact I’ve been carting 30 pairs of jeans around for the last 15 years. Will I really ever fit back into those size 10s? Lots of purging going on, and I’m happy to say I’m down to just three pairs.

There are many things I discovered about myself over the last four months. One is that I can survive on a lot less. We have made three trips to the Salvation Army already and are still purging. I literally feel lighter as all of these things leave our house.

The boys. So much to talk about with the boys. Sam is really doing great in his typical preschool and is besotted with a boy who possesses the name of one of the Thomas and Friends engines. If this were not compelling enough, they both share a love of the trains themselves. However, the other boy is a bit of a bully and can barely tolerate Sam’s adoration. Every time I pick him up, Sam shouts as we are leaving: “Bye, Gordon! Thanks for playing with me!” while Gordon barely acknowledges Sam’s effusiveness. However, after our first parent-teacher conference, I was told that he is one of the easiest children in the class and also one of the most self-aware four-year-olds they have met. The consensus seems to be that he should be fine in kindergarten next year. We are crossing our fingers. At the same time, the county is getting ready to move Sam up to a less restrictive special ed preschool class in the next few weeks.

John is both more engaged and more autistic. There never seems to be an hour when he is not stimming with his hands, flicking them about with silly talk. According to his teacher, the biggest barrier to him learning is this stimming. It really troubles me and makes me want to try to eliminate wheat or dairy or something to see if he eases up on this. It interferes with everything, not the least of which is his interactions with us. And yet — there are moments, albeit brief, when he is engaged and laughing and just there. Actual pretend play: bringing my head down to his level and saying, “Sleeping” as he demonstrates with the cutest pretend snore.

Lots to share. Hope to be back blogging more regularly.

Treading Water

The boys are back in school and even though we are still not in our house — instead in a furnished apartment down the road from the old hotel — we are managing. I guess the great lesson from this whole summer is that we survive. It may look impossible at the outset, like we will drop to our knees and beg to be beamed away, but we will adjust. Two boys who have issues with change and disruption will adapt.

The adaptation ain’t always pretty. I should have completely omitted from my last post the part where they are sleeping through the night because that must have been someone else’s children. While Sam has had an easier time of it, John has started some vicious manic awakenings. Every night, usually from about 1:30 to 5:30 a.m., he is laughing, singing, yelling. When brought to our bed, he does all that plus kicking and poking and jumping.

Desperate, we’ve started giving him melatonin before bed, a remedy I’ve read has worked wonders for many of you other sleep-deprived families. I was pretty skeptical, but as far as helping him fall sleep? Amazing. Normally it could take up to 90 minutes while one of us lies with them. Now: 5 minutes. I am slowly reclaiming huge chunks of my evenings. The only caveat is that it may help him fall asleep, but not stay asleep, which is why I’ve been up today since 3:20 a.m.

I’m afraid that the lack of sleep is not only interfering with John’s school day (he’s pretty low-energy mid-morning), but it is also making me less patient, more irritable and very frustrated. I watch Twins Dad’s reservoir of patience at 4 a.m. and am simultaneously grateful and dismayed that I can’t match it. I’m done and the day has barely started.

John has always had this sleep issue, but it used to occur much less frequently. I remember when he was barely two and I would go to him in his crib and his legs would be hyperextended and he’d be so tense, so wide awake, that I worried about how stressful it was on his tiny body. I don’t know how to help him when he’s like this or if I even should.

Do I get earplugs, double-bolt the doors and make sure he’s in a safe place? Is there something I haven’t tried yet? This morning, John could not tolerate covers of any kind, not even a sheet. And yet, he sought out Twins Dad with his feet and legs and arms, reaching out for him with an urgency I’m not used to seeing. Then as soon as he’d make contact, he’d jerk his legs, almost involuntarily, and push away. Over and over and over.

In the dark I rage at the fact we are still not in our home, as if that might make all this bearable, that the familiar would make these night-time awakenings cease. I guess the great lesson from this whole summer is that we survive. It may look impossible at the outset, like we will drop to our knees and beg to be beamed away, but we will adjust. Two boys who have issues with change and disruption will adapt.

And hopefully that means Mommy too.

When Life is About Breakfast

Well, hello. Remember us? So many things to say, so little energy. We are still living in a hotel, 21 days since a fire destroyed two bedrooms and a roof. Still waiting for work to begin on our house and all we’ve heard in response to When can we move back in? is Two? Three months? Maybe more.

Nearly one month gone and it’s looking pretty gloomy.

I will say that I no longer feel that home insurance is a useless, overpriced bite out of our wallet. No, not anymore. I don’t know what we’d do if we had to pay $300 a night, ourselves, to stay in this (so not) palatial inn.

As you can imagine, it’s been hard on the boys.

We’ve been in three different units now, thanks to the complaints of people below us. It’s the noise, they say. Sounds like jumping. Yes, my children jump. I never realized how much until I tried to restrain two excited, jumping, autistic boys — who cares if it’s 5:30 a.m.! Suffer with me. Well, now we’re on a ground floor and so far so good.

(We did have a brief one-week respite from the (so not) palatial inn when we went on our beach vacation. That is a whole other post involving sensory overload. Think sand. Think waves. Imagine.)

Our insurance company is trying to find us a house or town home to move into for the duration. So far not so good.

We’ve kept up our routines: school, camp, ABA, a mad dash of commuting. It’s been hardest at bed time because they will not let me leave them as long as they’re awake. Sam gets teary and asks about the house and Are the people still fixing it? I used to feel a bit smug about how easily my kids went to sleep. Bath, book, lights out, no complaints. And it kept my sanity knowing that at 7:30 I would have that down time we all need.

Instead, that down time is disappearing as bed time turns into a Supernanny episode. (It’s not working!) I don’t expect it to get better any time soon and you know what? I’ve been a little cranky about it. I think I’d be less cranky if they slept through the night but they play musical beds or something, each night alternating with a wailing sob right around 3:30. If we’re lucky, we get whoever back to sleep while slumped on the sofa. Other nights we’re up for the day.

I know that this is traumatic for them, I know. But it’s like having newborns all over again. I’ve just realized that I’ve been awake since 4 a.m. Yawn. But hey — did I mention the breakfasts here at the (so not) palatial inn? Every morning: eggs, sausage, fruit, french toast. Never underestimate the power of a free breakfast. It almost compensates for this silly hotel not having Bravo so that I can watch Season 5 of Project Runway.


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