Autism Unexpected: Our Year in Autism

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I spend a great deal of time looking for progress in Jack, my son with autism. My family, his teachers and his therapists work incredibly hard to help him learn how to work around the deficits that come with his autism. Because we, as parents, live with tiny, incremental changes every day, it’s hard to see how far our children come over a course of months.

I was reminded of this last week, when Jack’s speech-language pathologist showed me some testing scores and explained how they related to the same test that she’d given him two years ago. He has made incredible improvements in his expressive and receptive language, which got me thinking about what else he’s done over the past 12 months.

Homework

I started 2010 fretting about homework. Jack’s first grade homework was destroying us. He would go to school for six hours, then we would spend one or two hours fighting over homework. Jack didn’t have any time to relax, process his day or just be a kid and play. I felt as if all we did was fight over spelling words and math worksheets.

Shortly after I wrote about our homework troubles, Jack’s team and I worked out a compromise, where they would give him his due-at-the-end-of-the-week reading packets on Fridays instead of Mondays, giving him the weekend to be a kid and get some of his heavy work done.

Now, at the end of 2010, this homework policy is codified in his IEP, the document that outlines Jack’s services and accommodations. The truly wonderful thing is that taking the daily pressure off of him seems to have helped Jack see his homework in a more positive light. He still has homework each night, but he tends to power through and get it done with a minimum of anguish.

Social ability

One of the most upsetting realizations I had earlier this year came in February, when I realized that 7-year-old Jack didn’t know the names of any of the children in his class—kids he’d known for a year and a half. Discovering that Jack was completely socially isolated in his class, spurred me (and his school team) into motion, creating goals for him and working on helping him interact with his peers.

I saw this work come to fruition earlier this month when I was volunteering in his classroom. His teacher reports that the kids sitting at Jack’s table have turned into a nice little unit, with Jack regularly interacting with them. I saw one of them say hi to Jack, to have him turn to her, start to say simply, “Hi,” and then turn back to say, “Hi, Kelly.”

The fact that he knows her name and cared/was aware enough to know he should use it is a huge leap for him. I’m so proud to see him start to make it.

Invisible disabilities

There are so many challenges that face children who are disabled, but not visibly disabled. My family and I face this reality every time we leave the house. Unfortunately, this challenge is not one that Jack can overcome; rather society has to become aware that children and adults behaving outside the norm are not necessarily misbehaving, but might have a legitimate reason for acting the way they do.

I began the year by grappling with this very issue at a new year’s trip to a children’s library. March brought this issue to the forefront of the autism blogging community when an anonymous child’s behavior in a library led to a rant about her autistic-like behavior by a blogger unfamiliar with autism.

My family and I still struggle with this. I see looks from strangers when Jack acts oddly. Occasionally we will run into someone who gets it, such as one such woman in a building lobby a few weeks ago. Jack hopped up and down in front of her using his bare hand as a puppet and waving it in her face. I watched her face register understanding just before she reset and began to engage him, very much on his level. That five-minute conversation made my day. I hope to run into more people like her in 2011 and beyond.

Fun

With all of the focus on therapies and interventions, so much of being an autistic child seems like work. I always have my eyes open for activities that will be fun for Jack, but that don’t involve him sitting in a room by himself building Lego creations.

We have tried a variety of activities with Jack, many of which haven’t worked out. In June, we gave baseball a shot, but it turns out that Jack doesn’t like baseball. Three months later, however, Jack joined the Montgomery Cheetahs, a special needs hockey team, and we found out that hockey is his sport.

Jack’s weekly practices and occasional games with the Cheetahs has been one of the high points of 2010 for us. His pride in his new identity as a hockey player is incredible. As he gets more comfortable on skates and becomes more aware that he is part of a team, I look forward to Jack’s increased self-confidence and physical abilities in 2011.

School

Every parent of a child with autism that I know worries about school. We worry about the teachers, the other children, how our kids learn, bullying, our own children’s behavior and whether the school system will provide the services our children so badly need.

Jack and I have been incredibly lucky with a wonderful team at his school. Still, the beginning of 2010 was a bit of a struggle for Jack. I regularly received phone calls from the school about Jack’s behavior and my heart always sank a little bit when my phone rang during school hours.

Even after success at summer school, I worried about sending Jack back to school this fall. I knew that second grade was much more difficult than first and I was concerned that his problem behaviors from last year would reappear.

Due to his teacher, who really seems to get him, Jack’s age and increasing self-awareness, plus a great deal of work accommodating his sensory needs, Jack has performed beyond our expectations at school. He still has his off days (and weeks), but he’s found a good spot at school and he is happy, which is more important to me than anything else.

At the beginning of December, I wrote a hopeful post on my personal blog about how things are currently going for Jack. That post sums up so much of the way I feel about the past year. We started 2010 taking steps forward, but also falling back an awful lot. While we still take steps backward, we are taking more and more that propel Jack forward.

When I look forward to 2011, I think of all the progress that Jack has made this year. It hasn’t been easy, and I know that there are many struggles in front of us, but I can’t wait to see what Jack has in store for me on our journey for this coming year.

I wish you and yours a wonderful new year. May 2011 be full of progress, hope and love for all of you.

Originally published at Autism Unexpected on December 31, 2010.

The End of the Season

Team Stimey had a lovely Christmas this year. It was just the five of us and we burrowed into our living room for three days and played with each other and chatted and ate a lot of food and then just when that was too much, Alex made us all go to the park in gale force winds and sub-freezing temperatures where my kids rolled down a hill over and over until they were nauseated.

All in all, a pretty good Christmas weekend.

Then, today we ripped down all the Christmas decorations and threw the tree out into the front yard. (We are the neighbors everyone wishes they had.)

My kids are home from school this week, so I’m sure I’ll have some good stories for you soon—and some ponderables, such as “when Jack acts like a crab sidling back and forth with his arms in the air for 20 minutes, would you guess that he is happy or that he is screaming for intervention?”(I ended up falling somewhere in the middle on that one.)

But for now, I’m going to relax, clean my desk, and not think about anything other than the movie Alex is about to put in the DVD player.

See you soon!

Merry Christmas 2010!

Dear Friends Who Live in My Computer,

Merry Christmas!

I do know you don’t really live in my laptop, because your very real and wonderful beings have made such a difference to me. Some of you I know in real life, some of you I only know through your words, but all of you are important to me. You make my life better, and I am so grateful for you all. I hope each and every one of you is having a day full of peace, love, and joy.

(To my friends who don’t celebrate Christmas: May your Chinese food be delicious. Also, I hear True Grit is supposed to be great.)

Much love,
Team Stimey

All the Creatures Were Stirring…

…and the little assholes totally wrecked the lovely tableau I am about to show you.

Except for, you know, that one line in the story, mice pretty much get ignored at Christmas time. I don’t think that’s right, so I made sure to create some Christmas memories for my little rodents that they wouldn’t soon forget.

(When I told Alex of my plan, he gave me a weird look and said, “You’re a funny lady.” I don’t think he meant it in the ha ha sort of way.)

But before I get to that, I need to show you this. I forgot to tell you that I got a car for my mice.

Gerbil has already been pulled over for speeding.

Poseidon spent, like, a week just hanging out in there.

The best part was the time I was cleaning the cage and picked up the car, assuming it was empty, but there was a mouse in it. Quinn and I laughed and laughed and laughed.

Well, because mice don’t have calendars, I decided to make yesterday their Christmas. I had actually put a lot of thought into Mouse Christmas. Because mice chew everything, I had to find chew-friendly decorations. Because no one makes Christmas rodent chew toys—an obvious lapse on the part of the pet industry—I had to make my own.

I decided on wooden stocking cutouts, like those you can find for 29 cents at the craft store. I couldn’t find them, so I bought some cheap wood squares, thinking I could cut stockings out of them.

Then I started to worry about splinters.

Scrapping the cutout idea (and the $1.45 I’d invested), I decided to make my own out of cardboard. I wanted to decorate them, but I was afraid ink, lead, or crayon wax would kill the mice, so I left them plain, which was sad, but responsible.

I know. I’m a little crazy.

Then I had to think of a way to tie the stockings up. I found a jute string that I don’t think will kill the mice if they eat it, but then I worried about creating little nooses for the mice. Like, “the stockings were hung in the mouse cage with care—oh, and look there’s Squeaky hanging too.”

It’s possible I was overthinking this, but who wants a Mouse Christmas tragedy?

So yesterday I cleaned the mouse cage and then, because everyone enjoys a  White Mouse Christmas, I made it snow in Mouse Town.

Then I rearranged the snow seven times, because that’s how I am.

Next, I hung up the stockings with care. It’s hard to see them, but they are mouse-safe and tied to the ladder over there. I cut them out of cardboard. They are of a uniform size, but for one, which I am designating as Scabbers’ because she’s kind of an asshole.

See, the snow is better like that, no?

Next, the coup de grace, which would have been better if I wasn’t worried that brightly colored marker ink would kill mice, the Christmas tree.

Imagine a dramatic tree-lighting ceremony here.

I am SO smart. I made it stand up. It was even strong enough that when Squeaky draped herself over the top, like a live Mouse Christmas star, the tree didn’t fall over. I took a photo of that, but it didn’t come out because of flash on glass issues.

Even mice need presents to unwrap, so I put a food-in-a-box toy in there.

I hope they’re not mad that they have to share. I bet Scabbers will be. Jerk.

At this point, we were ready to start Mouse Christmas. My elf helped with the reintroduction of the local fauna.

Man, it must be terrifying to be one of our mice.

The Mouse Christmas celebration was short, but delightful.

Mostly I think I confused them.

To Quinn’s chagrin, I had not made mini-Santa hats for each mouse. The stockings were a big hit though. In fact, one of them has gone missing already, so I consider them to be a complete success.

Scabbers is pissed that she got the small stocking and is looking for a fight.

Also, I wish that I’d taken this next photo before I had my Christmas cards made up, because I might totally have foregone photos of my children and used this instead.

Gerbil is smizing.

Shortly thereafter, the mice destroyed everything I had created for them.

Ungrateful pests.

This is what I woke up to this morning. The stockings have been capsized, the tree has been tipped over, and the mice built a little snow buffer so that I can’t even watch them eat their present.

I guess Mouse Christmas is officially over.

A Lovely Evening of Song. (Ha.)

So, evening functions at the elementary school: yay or nay?

It would make me feel like way less of a terrible parent if you all agreed with me that things such as, oh, let’s say a holiday concert featuring first, third, and fifth graders, are some sort of torture inflicted on us by teachers who are tired of taking care of our kids day after day and are looking for payback.

I mean, sure, they’re cute and all, and hooray for their pride in participating, and of course I would like to see Sam sing Rodgers and Hammerstein (“My Favorite Things”). But ooooohhhh mmmmyyyyyy lllllooooorrrrrdddd!

First, the cute:

I always choose the wrong side of the auditorium on which to sit.

To get to that cute, I first had to last through the first graders (of which I have none), while managing both Quinn and Jack in the audience. Alex, who arrived late, didn’t find a seat in the room full of probably 200 parents and 100 chairs.

The lucky bastard got to stand in the hall by himself.

I was going to insist that my children pay attention to the concert and not play on the iPhone until I realized three things in rapid succession.

1. Sam had to be at the school at 6:30 to prepare (and by “prepare,” I mean “line up”), but the concert didn’t start until 7. Then, Sam wasn’t even on stage until 7:20 or so.

2. Both of my children had already sat through the concert once today, when it was performed as an assembly at school. And come to think of it, I got a note that Jack was squirmy and misbehaved then.

3. When I realized how annoyed, uncomfortable, and hot I was, I folded like a bad hand in poker and gave Jack my iPhone.

He did this for the next hour.

That left Quinn. The three of us were squished together into two tiny folding chairs. If you do your math, you will figure out that Quinn was probably on my lap. And if you know your history, you could probably guess that he did not sit still.

His props today were a stuffed mouse and a Santa Claus hat that I bought for $2.99 at 7-11 and which left red and white lint in the hair of anyone who wore it. Quinn futzed around and fidgeted all over. I worked really hard to keep him from falling off of me onto the lady sitting one inch to my left or clobbering Jack a half inch to my right.

He spent part of the evening hanging out on the ground.

Honestly, it was the best place for him.

Then, Quinn’s buddy, who is a lot like him, showed up (after the first-grade parents left and the third-grade parents found seats). Quinn’s behavior only improved.

If anything, that kid was even more animated than the sketch makes him seem.

At this point, Quinn had his own seat right next to me. Unfortunately, he stood up for a split second and some lady swooped in and sat down.

This would have been fine and all, but for the fact that, (a) by this time, there were plenty of seats not right next to me, (b) she was sitting on a third of my chair in addition to hers, and (c) she smelled like a distillery.

Now I’m not saying that any member of Team Stimey smelled all that much better or that we are above boozing it up to soften the blow of a school concert, but I’d just about reached my limit.

After the third graders, I stuck around to take some photos for my friends with a fifth grader. By this time, Alex had found a seat near us. Then I murdered Quinn.

Okay. No. But I wanted to.

At least we’re done with concerts until May, when Quinn and Jack will be forced to perform. I look forward to another perfect storm of sensory overload, crowds, and noise then as well. Would it be bad form for me to take my own DSi to block out the world at that one?

Just to Prove I’m Still Alive

There isn’t a whole lot going on in Stimeyland these days. Tonight I asked Alex what I should write about because in the back of my head I keep hearing, “haven’t posted since Tuesday…haven’t posted since Tuesday…” All he could come up with was, “Well, Jack stayed home sick today.”

I know. We’re alive with action here.

Well, not all of us.

Hmmm. What else?

Oh, right, when Quinn was running home after he got off the bus today, he tripped over a stick and took a header into the sidewalk. Ironically, he had put the stick there on the way to the bus stop this morning.

It was terribly tragic.

 His giant, intense bump was outshined only by his giant, intense bedhead.

In other exciting Team Stimey news, Quinn took his frustration at the stick out on the dog, who was forced to wear all of his winter gear.

 She says, “help me.”

That’s it. I got nothing else. Except this:

It’s always the innocent who suffer.

Now I have something new echoing through my head: “haven’t posted anything of worth since Tuesday…haven’t posted anything of worth since Tuesday…”

Autism Unexpected: Teacher Gifts From Autism Families: More Than the Norm

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This coming week is the last of the calendar year that my kids will be in school. It is also the last week that my kids will see their various therapists. This last week brings not just holiday parties at school, anticipation for Christmas and a hope for snow days, but also the annual Teacher Holiday Gift Season.

My youngest son will give one teacher gift. My oldest son will give three. Jack, my seven-year-old with autism, will give 12. Yes, twelve.

Now, to be fair, not all of those gifts will go to teachers. They also go to therapists, paraeducators and bus drivers. See, my youngest son has one teacher. My oldest has a homeroom, a math and a reading teacher.

Jack has a homeroom teacher, who is also his reading teacher, plus a math teacher. He has two paraeducators/resource teachers who work with him during the day. He has a driver and an aide on his morning bus, and he has a different driver and aide on his afternoon bus. Then there is his speech therapist, his occupational therapist and the two therapists who work with him at his social skills group.

You may wonder why I give gifts to all these people. My reasons are threefold:

1. Momentum. I started giving gifts to these people back when I had four to give. Now that there are sixteen, I can’t backslide on the gift-giving continuum.

2. Peer pressure. When I showed up to social skills group last week, one of the other moms had her adorable little gift bags all ready and sitting on a chair next to her. Do I really want to be the jerk who mumbles “happy holidays,” and slips out the door while everyone else is hugging and cavorting over thoughtful gifts? (That’s how it happens in my mind.)

3. Pure gratitude. The real and true reason I give these gifts in December is that I am incredibly grateful for all of the care these people put into helping my child. All of them work really hard for Jack, some of them for very little money, and I like to let them know that I really and truly appreciate what they are doing.

Everyone on my list, from the teacher who accepts Jack as a welcome member of her classroom, to the aide on his afternoon bus who makes sure he waits safely at the top of the bus steps until I get to the door to catch him, has become a vital part of his care.

Jack has connected deeply with these people—as have I. He asked one of his paraeducators to be his second mom (which, you know, sucks for me, but is great for him). One of the women who worked with Jack in the past has become a personal friend of mine. Jack regularly asks to go back to see his occupational therapist that he hasn’t worked with for an entire year, and I will genuinely miss his speech therapist, who is moving to another state at the end of the month, and whom we have seen nearly every Monday afternoon for the past two years.

It feels important to mention that I am a firm believer in gift cards for this kind of gift. Regardless of their impact on our lives, I don’t know any of these people well enough in their private life to buy an appropriate, yet not too expensive, gift. Sometimes cookies or candy can work, but with so many people concerned about what they eat, I tend to steer away from this as well. Ergo, every December I head out to Target or Barnes & Noble and buy a stack of gift cards in various denominations.

Each of these people has created a space for themselves in our lives. Shelling out gobs of money every December for the cards isn’t awesome—but giving thanks to the people who are helping Jack reach his highest potential really is.

Originally published at Autism Unexpected on December 20, 2010.