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Where Am I?

by Mary on April 19, 2010

Why is it so hot? Why am I in this handbasket?!

The J-man has been on Spring Break for three weeks now, with one to go. It has been, for the most part, wretched. There has been so much crankiness in our house that I’m surprised it hasn’t split at the seams already. Maybe by this weekend!

Never before have we seen exactly how much he craves the routine of school. The sensory overload of, well, everything he sees, touches, eats, or hears has boggled my mind. I watch him struggle, and watch us struggle with him, and I feel overwhelmed. Tim feels overwhelmed. Dale Jr is still going with the flow, although he will occasionally look over at his big brother like, “Dude. Calm down!” The J-man, whose bedtime and morning routines have been stable for months, has suddenly needed to be dragged (literally) to the bathroom for teeth-brushing and shower, dragged back to his room for clothes, forced into his clothes… and then at night, carried/forced into taking meds and having teeth brushed, manhandled into pajamas… He bit me the other day on the finger so hard that I still have a blood blister 2 days later. He went a couple weeks where he ate nuggets so rarely we were concerned about his protein intake, but thankfully that seems to have subsided. No amount of brushing/joint compressions/smushing has seemed to help.

Of course, none of this is helped by the extended family’s illnesses/surgeries/dramas going on, and the fact that both Tim and I have been absolutely covered up in work. I’m leading a project right now, and I haven’t done that in a long time. Tim is frantically working to meet a deadline, but he can only get so much work in per day, because of having to be with the boys all the time. The house is a wreck, and we don’t have the energy to fix it, but because the house is a wreck, we feel even more stressed.

Tim and I talked last night in bed, and I told him something I had read recently on a blog. Someone said, “Nobody is coming to save you.” They were talking in terms of money, but also in terms of regular life.

I realized that lately, I’ve been reading fiction where there is ALWAYS someone there to “save” the main character. There is always some distant relative you’ve never met who dies (but because you never met, you don’t feel too bad) and leaves you a house, or a huge amount of money. Something relatively small that you were left by your elderly godfather is actually a rare item worth $80K. Or, suddenly a nanny appears who is able to care for your children AND clean the entire house with one hand tied behind her back, and you can afford her full-time. (We actually have someone who comes in for a few hours every couple of weeks, and we LOVE her. But we need more than a few hours!) Somehow, you stop eating because of stress, and look down at yourself and have magically lost 4 dress sizes.

I realized that I have been behaving like somebody was coming to save me. It’s not going to happen. I need to start acting like that.

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Living It

by Mary on January 23, 2009

We met up with other parents last night at the J-man’s school. The AU teachers at his school hold get-togethers for us on the same nights as the rest of the school has something parent-related.

You know, it’s good to talk to people who KNOW what we’re dealing with. They don’t feel sorry for us; they don’t blame us; they understand. It’s hard to get that from parents of “normal” kids. We talked about serious things – and we talked about funny things. There was a LOT of laughter, especially with Tim being the only man in the room, as there was a reference to “snipping it off” which sent us into hysterics, but made Tim lock his knees together.

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The 439 Stages of Grief

by Tim on January 6, 2009

[Note from me: This is another draft installment of that collection of essays and reflections that I hope to someday compile into a book. The first one I posted was "What if he never talks?", though I plan for other posts here to someday appear in that collection too. As always, comments are welcome.]

The 439 Stages of Grief

Pretty much every parent who has ‘gotten the diagnosis’ goes through grief, even if they expected to hear the word ‘autism’. We have in our minds from the moment our children are born ideas and images of how we see the story of their lives unfolding. Sitting in a chair and hearing that word used for the first time about our child wasn’t part of that.

Every parent’s story begins with imagining first smiles and first steps and first words. We saw ourselves playing catch with them in the yard. We watched them chase with the other kids in the neighborhood. We saw them going to their first day at school. We heard our cheers mixing with the other parents’ as our children ran down the sports fields after school.

They went to middle school; they started having crushes and eventually – God forbid – their first girlfriends or boyfriends. They kept growing into tweens and teens. They learned to drive and went to prom and graduated, in our dreams always with honors as the valedictorian.

They’d leave home, and already we felt sad even with that still two decades away. They went to a top college and earned their degree with distinction, of course. They went on for more school or got an important job and made a lot of money, striking out on their own in this great big world.

We hoped they would find someone perfect for them who loved them and whom they loved equally in return. If they so chose, we hoped they’d bring children – our grandchildren – into the world. And we watched the dreams and the stories continue with our next generation, as they have for millennia before us and as they will for all our days on this world.

Almost fundamental to being a parent is our desire for our children to be free of all barriers to their potential so that even the sky itself isn’t a limit. We want the fairy tale for them. When we heard the word ‘autism’, that sky, and the story, fell in a blinding flash of fire, leaving only a blank page set against an empty horizon.

But this isn’t how the story really ends; it’s how a new one begins. The blank page waits for us to choose how to write our true story. But those of us who got the diagnosis know that at the beginning you cannot conceive of a single word to write because you just watched the whole thing burn up in front of you. You’re still holding the ashes of everything you thought was going to happen.

This is grief, pure and simple. You will have to sit with these fistfuls of ashes and this book full of blank pages for as long as it takes to grieve. You will let everything fall to the ground and sit in these ashes and feel like the world may end. You will be angry at everything and nothing. You will look for people to blame; you will look for anything at all to blame; you will blame yourself. You will promise anything, do anything, bargain with anyone to find a way to get your child – and yourself – out of this. You will just sit motionless on the floor and cry yourself down into a bottomless lake.

And at some point, you will come to a place where you have to decide what you’re going to do. You will stare down endless, featureless paths and have to decide which to take without having any idea what’s down them. You can keep bargaining and railing against the world and giving yourself and your child completely over to the next person who says they can help without caring how crazy they might be. You can drive yourself mad with guilt.

Or you can willingly choose to turn yourself directly into the fury of the storm, grit your teeth, and take one, single, determined step forward. You can sweep your arm behind you, cradle your child behind your leg, and block the wind for this perfect little child you love more than anything in this world.

And this is the way it begins for all of us, with one, single, determined step.

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Holiday School Party – Things Worth a Thousand Words Edition

by Tim on December 21, 2008

Yesterday was our last day at school for about 5 1/2 weeks, so we had a holiday, ornament-making party to celebrate. Admittedly, though, most of the parents aren’t feeling all that celebratory about the prospect of having to do all the structured learning and therapy work on our own at home until the end of January.

These classroom parties can get a bit chaotic as no one’s child really acts the same with their parents – and everyone else’s – there as they do on normal class days, though this shouldn’t shock anyone. It’s a pretty big disruption of their routine.

The nice part about being with these parents is that pretty much nothing anybody’s kid does fazes any of us, and we all know how crazy some – or most – days can be. There’s never any need to make excuses or feel ashamed about anything, though habits still die hard. It’s easier to show grace and understanding to other parents than to ourselves a lot of the time.

All the other kids were sitting at the table for snack while the J-Man was running around. He was wide open the whole time we were there and wouldn’t sit still for more than ten seconds, if that. It was rather frustrating in that we had hoped to sit with him and make ornaments, but learning to go with the flow and manage expectations is just part of how all this works.

As it got close to time to leave, another child reached his limit and got very upset. It was a very emotional moment for his mom, but everyone rallied around her because we understand a lot of what that feels like. It’s not just about that moment, but the sadness that every day something causes our children to become so upset, and nothing we do seems to comfort them. What seems like a simple thing for most people – waiting for someone to arrive so everyone can leave – often turns into a huge challenge for our kids. It’s easy to think, “It just shouldn’t be this hard all the time,” and then cry because you know it really is hard and feel powerless to do anything to help.

Tears can be worth a thousand words to those of us who have travelled down roads similar to yours. She didn’t need to say anything or justify anything or apologize for anything. We know the story and can empathize because we are part of that same story.

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Car-oling, True Gifts, Some Bragging, and Thoughts on Hope

by Tim on November 28, 2008

I have one absolute law about Christmas – absolutely no Christmas music until the day after Thanksgiving. I believe in doing one holiday at a time, doing that holiday well, and then moving on to the next one.

But once Thanksgiving is over, Christmas music plays several hours a day at our house. We’re totally into the holidays. If you celebrate other traditions this time of year, we’d be into yours too if we could learn the music.

We finally rolled out of the house today a little before noon to meet up for lunch with the family. On the way home, we were listening to Andy Williams and Bing Crosby, and J-Man seemed to be enjoying the Christmas carols from the back seat. Then he started sounding like he was trying to sing along a little. It was hysterical.

“I’m dreaming of a white…”

“Nee-nee!”

Yeah, we don’t know either, but he was serious about it and we busted out laughing.

“Let it snow, let it snow, let it snow…”

“Guh-ul-eh-ssssss!” (J-Man-ese for “Let it snow” we supposed.)

“I’ll be home for Christmas, if only in my dreams…”

(Pause, pause, pause, pause.) “Sssssss-kuh-ssssssss” which we are pretty sure is “Christmas” given he said this a few times.

[Speech tidbit - it's not unusual for him when attempting to say two syllables to switch them. It's quite possible he meant to say "kuh-sssss" for Christmas, but he may very well have switched the two and then corrected himself. ]

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Decision Against Alex Barton’s Teacher – At Least For Now

by Tim on November 20, 2008

I and half the autism blogosphere wrote a while back about Alex Barton’s horrible ordeal at school where he got voted out of his kindergarten classroom by his peers at the leading of his teacher. The idea – warped as it was beyond what the human brain should be capable of – apparently was to help him somehow understand that his behaviors were disruptive of the class and he needed to be shamed into learning to improve his behavior – since of course that’s so easy for an autistic child to do under the best of circumstances – or some asinine junk like that.

Raise your hand if you think anyone with two brain cells to rub together would think this is a helpful behavioral therapy technique for autistic children (or any child for that matter). That’s what I thought. You can read more about it on my previous post if you want.

Now fast forward to the present – Alex Barton’s teacher, Wendy Portillo, has now been suspended without pay from the school for one year. The local superintendent is asking the state Board of Education to revoke her teaching certificate during that year. Reports are that her tenure has been stripped such that she will only be able to get a year-to-year teaching contract when she returns. No criminal charges will be filed.

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Giving Thanks for Therapists – A Season of Transitions

June 22, 2008

Assuming you have good relationships with them – which to a person we’ve had with all of ours – your child’s therapists become your friends; they leave and you mourn. They bring you the one blessing you want as much as anything. They help your child take the one step at a time they need [...]

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This Little Light

May 30, 2008

I originally wasn’t going to weigh in on the recent, reprehensible treatment of Alex Barton by his kindergarten teacher in St. Lucie County, FL because it’s been written and blogged about at length all over the Web. I didn’t really know what I could add to it. But prominent bloggers who write about issues related [...]

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