autism diagnosis

Don’t Look at the Whole Staircase

Chris Irvine, Parent CoachLeave a comment

I like to think I have some natural gifts that lend themselves to good parenting. I believe I am empathetic, creative, logical and kind, which helps me connect to people in general and my kids in particular. That’s not to say these qualities are always activated when I’m parenting. Perhaps I’m using one or another, or perhaps they’ve all flown out the window in a moment of frustration or exhaustion.

I also happen to have two of the least fickle kids on the planet. Once they decide, They Have Decided. On whatever it is. Maddie’s way of expressing her decisiveness is the simple act of refusing to bend. She has decided not go to to Thanksgiving at Grandma’s, for example, so there is nothing you can say or do, no threat of punishment or offer of reward, that will alter her decision. The answer is no, and that’s that. We can make our whole family insane trying to change her mind, and the likely outcome involves not even a glimmer of hope. There are exceptions, of course. Like when I was trying to potty train a nearly four-year old kid who just wasn’t interested in the process, so I started challenging her to race me to the bathroom. I think it worked twice, and then that was the end of that. Still, I was thrilled with my double victory.

My son’s way is different. He can argue you into a rabid, frenzied froth of frustration. You will never win that argument. You might not lose it either, but as a parent not winning is pretty much the same as losing. I had an early indication of his logic skills when he was a five-year old preschooler. He had shut the door to his room, which was unusual, so I thought I’d better investigate. I soon discovered he was in his closet, door closed. He had to be up to something. “What do you have in there?” I queried. Out stretched a hand holding a box of goldfish crackers. “Why are you hiding those?” I asked. “If you had asked me I would have said yes.” And then something dawned on me. “What else do you have in there?” Out stretched his hand with what turned out to be decoy number two: a box of Teddy Grahams. I repeated my response. I was detecting a pattern. “What ELSE do you have in there?” And there it was, a bag of chocolate chips. And that was NOT okay with me. That evil genius had rolled out his decoys in hopes of avoiding the final discovery. “We’re screwed,” I told my husband. Some years later – maybe he was eight – he effectively asked me a series questions, knowing how I would answer, so that I would actually lead myself to his desired conclusion. I don’t remember the topic, but I do remember realizing what was happening just before he succeeded.

I am reminded of our friend’s mom who early on recognized our challenge with Maddie. “Her stubbornness will serve her well when she’s grown. The hard part is getting from here to there.” Amen, Joan, amen. Same for our son, I’m sure.

So anytime I can talk my kids into anything, I’m surprised and delighted and pretty darn proud of myself.

A couple weeks ago my niece M turned 18. Maddie and M are only nine months apart and truly the best of friends. Our families live about 45 minutes away from each other. M is incredibly busy, so the girls don’t see each other as much as they’d like. So you would think, wouldn’t you, that the upcoming party and sleepover would be unmissable.

As I try to do with Maddie, I had reminded her each day for a few days to prepare her for the event. Late morning the day of the party I sat down on Maddie’s bed and said, “We should leave around three o’clock today.”

And to my surprise she responded, “I have been trying to motivate myself all week, and I just haven’t been able to do it.”

All the months since she graduated high school, I have been avoiding, as much as possible, any situation that involved making Maddie go somewhere. After all those years of morning turmoil, I realized not only did I no longer have the energy to take on that fight, but that the fight was futile anyway. So much wasted effort, so much heart-attack inducing frustration that ultimately had no positive effect—I just couldn’t go back to that. And yet here I was.  I could feel the tightness in my chest forming almost immediately. We couldn’t let our sweet M down on her big day. And I really wanted Maddie to enjoy what I was certain would be a good night. What was I going to do?

I pulled myself together enough to say, “I think it’s been about two weeks since you went anywhere. That happens to me too, like when I’m sick for a week and I’ve been at home, it’s just easier to stay home than go anywhere. Eventually I just make myself go somewhere and then it gets easier. It happens to everyone,” I assured her.

She was still unmoved.

“OK,” I said. “Forget about going all the way up to M’s house. Let’s just think of something small to do first. Like maybe we could go to the coffee shop for lunch.” Originally I had required she take a shower, but I realized that was a serious obstacle, so I let that go.

“Is How to Train Your Dragon playing anywhere?“ she asked. A glimmer of hope!

“I’m sure it is!”

So we picked a movie time that allowed us a quick lunch out and would also get us to the party in time. I said, “Just throw your toothbrush and toothpaste in your bag in case we get up to M’s.”

Don’t look at the whole staircase. Just look at the first step.

I’m sure I’d heard that before but it wasn’t until a week or two later that a motivational speaker I was watching used that phrase. I had put it into practice without naming it, and to my amazement and delight, it worked. Just like all the times I folded Maddie’s writing assignment page in half so it didn’t look so scary. “Just do a Maddie-sized essay,” I’d say. Just one small step at a time.

We had our quick lunch (delicious and fun!), drove north to the movie (love those Dragon movies!) and it was an easy and welcome third step to drive further north to see her cousin. She was happy to be there and, as expected, she had a wonderful time.

I patted myself on the back or a job well done. But not because I won a battle. It was because I used one or two of my gifts at the right time to look at my daughter and see what she needed. Just a peek at the first step!

Nailed it.

How to Be Awesome

Chris Irvine, Parent Coach3 Comments

Yesterday I picked Maddie up from the camp bus. She has gone to winter camp for three years, and as you may know, the planning for winter camp begins the moment she leaves summer camp. Summer camp ends with a rest and then plans for winter camp. Basically this kid lives for camp. If she could do anything full time, it would be camp. Camp, camp and more camp. Thank goodness for camp! Have I mentioned she likes camp?

The first time she went to sleep-away camp, I was a nervous wreck the entire week. Instead of relaxing and enjoying having only one kid for a few days (it is SO MUCH EASIER), I lay awake in bed chewing my nails wondering if she was she ok emotionally without her mom. Would she be lonely, could she make friends? Would the kids be nice to her?  Did she need to call home? What if she got sick? Can she eat the food? What if she’s sad???

And then on pickup day I discovered what a magical place this camp was, and the only time I worried again was her first winter camp when it very suddenly became freezing for exactly the days she was there. I ordered wool socks from Amazon and overnighted them to camp. She thought it was weird. But I was glad I did it.

This session, though, I was a tiny bit worried. She had put so much effort into preparing something and I was afraid her heart would be broken.

Maddie’s current obsession (and I do not use that term lightly) is a video game called Assassin’s Creed. I don’t play video games at all, but I have seen enough of this game to understand its appeal. It takes place in various historical periods, and the visuals and costumes (HELLO COSTUMES!) are magnificent. She and my husband have declared Assassin’s Creed “their” game recently, and that’s how they connect. And his big gift to her this Christmas was an elaborate costume of the hero from the middle ages.

A few months ago, Maddie had an idea for camp. (Hey, thinking ahead!) Each cabin is charged with naming itself and creating a cheer. This is a creative bunch, given that it’s a performing and visual arts camp, so they always come up with something inspired. And inspired Maddie was. She wanted to name her cabin after one group in the video game and hope that the cabin of one of her guy friends would be their foe. In preparation, she bought 20 tee shirts, 10 black and 10 white. She made out of paper and duct tape (surprise!) emblems matching the groups and attached them with velcro. She made two incredible flags as well, again with the duct tape.

It was great to watch her pour her passion and creativity and time and effort into a project. I had nothing to do with it other than the requisite trip to Party City to get supplies. But all the while in the back of my head, I kept thinking this might not go as she planned. I didn’t want to dampen her spirits, but I also felt the need to prepare her for the possibility that the other kids aren’t so enthusiastic about Assassin’s Creed.

“I just don’t want it to ruin your camp experience if the kids don’t go for it,” I said. It hurt my heart to say it, but it was necessary.

“It won’t,” she replied. “I’ve gotten better at that.”

Well, indeed she has. And her self-awareness was startling and a bit of a relief.

All week I kept wondering how it was going. Perhaps her preparation would have been met with such appreciation that people would feel obligated to participate Or maybe there’s a whole teen cult of Assassin’s Creed among the drama set that I don’t know about.

Yesterday she arrived across the bay on the camp’s bus. When I drove up to retrieve her, she was already off the bus and waved me down. She looked great. Relatively clean, in her nice warm coat, hair in a pony tail, happy and relaxed.

After we threw our arms around each other for a long hug, a young lady introduced herself to me. “I’m Otter, Maddie’s counselor.” (All the counselors have nicknames, like Awkward and Sparkle and Tiny.) “We had a great week!” she said.

“Well, Maddie LIVES for camp,” I said.

“We know!” she said. Of course they know!

“She did a lot of preparation,” I said, stating the obvious.

“Yes, she did!” said Otter.

I turned to Maddie. “How did it go?”

“Well, it didn’t go like I expected. It turned out even better!”

I had been so afraid to ask her about the Assassin’s Creed thing, thinking perhaps if it had been a huge disappointment, that might not be her most desired topic of conversation. But now I had the opening to ask.

And this is how it went: The kids didn’t want to adopt her cabin themes. I didn’t ask for the details because it didn’t seem to matter. But what did matter is what came next. Instead of feeling rejected and disappointed, she decided to put all of her work to use in a different manner: She approached the camp director and suggested some LARPing (live action role playing). LARPing does involve costumes but it mostly involves particular types of battles and games. So she helped organize the whole thing and they rounded up pool noodles for weapons. There was a huge themed battle with those tee shirts and a big game of capture the flag with those great flags she made, and she got to not only enjoy all the fun but experience the rewards of her flexibility, creativity and leadership. I believe she felt positively heroic at that point. Apparently the LARPing was a huge success, and they all had Maddie to thank.

So she will begin preparing for next summer’s sessions. We’ll wash the shirts and she’ll make some more (a few kids kept theirs). And I suspect she’ll have some other ideas, as well, to help enhance the LARPing experience.

These moments are the glimmers—no, flashes!—of hope for the future. I don’t know what exactly Maddie will do, but what I do know is this: She is passionate and creative and flexible and she’s growing up and changing in all the best ways.

That One Time I Really Screwed Up

Chris Irvine, Parent CoachLeave a comment

I try not to have regrets. My philosophy is I am grateful for the life I have, and everything that has ever happened to me has led me here, so I shouldn’t regret any of it. All my successes and failures, all the joy and all the sadness, have led me here to this moment. So why would I change anything?

But here’s something I really wish I had done differently, very very differently. And that’s because my mistake cost us probably three years of services at school. I pass this on to any of you with a special needs child. Please learn from my mistake.

Each and every year, from kindergarten to through fifth grade, I would be called in for an SST meeting for Maddie. SST stands for Student Study Team. The child’s teacher is the one who calls for this meeting, and the participants are everyone who would be involved in an IEP or Individualized Education Plan meeting (that’s an official meeting to discuss the goals for the student for the year and what services will be provided and which accommodations will be made). The participants typically include the current teacher, the principal, the school psychologist, the school counselor, maybe the speech teacher and even the school’s occupational therapist. If there is an issue with academics or behavior that is not being properly addressed through other avenues, this is an opportunity for everyone at school who can help (and the parents) to brainstorm and make a plan.

Parents are invited, but if they don’t attend, the meeting will happen anyway. And each and every year I went. And each and every year we had the same discussion: why does Maddie have trouble getting work done and what are we going to do about it? Often everyone would look at me as if I had some magical answer. I looked at them an shrugged. As if! Aren’t they the experts? Had they not, in all their combined years of teaching children, ever encountered a kid like Maddie? Much to my frustration, it sure seemed as though they hadn’t.

And each and every year I left that meeting having done a heroic job of holding in the tears. I usually made it to my car before I let them flow. And they weren’t tears of joy. One particularly difficult meeting took place when Maddie was in second grade. The head of the special ed department, a very experienced and well-respected German woman who had actually started the program at this school decades before, used words like “odd” and “stubborn” to describe my child. It was terrible. Isn’t she supposed to have a special knowledge of and compassion for kids like mine? Didn’t she realize that this stubbornness, while undeniable, was a symptom of a larger problem and not just the behavior of a defiant child? I pointed that out every year, but nobody seemed to get it.

And this is at a school that’s known for its special services. It’s a public school, though, and even thought it’s exceptional in many ways, it has limited resources for kids like mine. The kids who receive services are typically either struggling terribly in math or reading, or have more severe cognitive delays. Maddie always tested very well and was clearly bright. But her varying performance day to day was actually a detriment to our cause: because on some days she was so capable, it seemed to everyone that she ought to be just as capable every other day as well. She must just be stubborn. She was stubborn, indeed, but at least I could recognize the source of her inflexibility at that time was the stress she experienced just trying to cope with a normal school day. She was unequipped for the rapid transitions that occurred each day, and the social requirements were far beyond her development.

In third grade, Maddie had a teacher that was new to the school. She had been teaching for over a decade, however, and was the first teacher to say, “Let’s get this kid assessed. She needs help.” She might have even used the word “ridiculous” in reference to the lack of services Maddie was receiving.

So after that year’s SST, the school began the assessment process. The school psychologist performed a number of tests to make her own evaluation, and she gave questionnaires to the parents and the teacher that covered a wide variety of behaviors. The goal was to identify a particular problem area that might qualify the child for services.

After several weeks, we reconvened to go over the results. (Keep in mind, this was a year before we had an autism diagnosis from her psychologist.)

The big reveal: She did not qualify for services. Her speech was fine (and a speech issue is usually a requirement for most services). And there was no diagnosis of autism. And that was because of me and me alone.

It turns out the questionnaires given to the psychologist, the teacher, and parents all have to match up reasonably well. If one person reports a very different set of behaviors, the other two questionnaires don’t hold up. And I was that one person.

I was heartbroken. We walked out of that meeting with no more help, no more answers, no more anything than we had when we walked in, and it was all my fault. Talk about regrets.

I think I was just so used to my own kid that some of the behaviors that others saw as outside of the norm seemed kind of normal to me. What did I know? She was just Maddie. I don’t think I was misreporting anything on purpose. I don’t think I was trying to paint a picture of Maddie that was rosier than reality. But that’s exactly what I did. And so we continued on the same path for the next three years, with Maddie struggling to live up to her potential at school, and with teachers who wanted to help her but didn’t know how.

When Maddie started flailing terribly in sixth grade, I had another chance, and I took it. Maddie was going to be the neediest kid they’d ever seen. Well, that’s an exaggeration, but I most certainly made sure that if I was on the fence about something, I erred on the side of “problematic.” I was honest. Brutally honest. Honest with the school and honest with myself. And no way was I going to let that travesty happen again. Remarkably (haha, not really), this time my reporting was more on par with that of the teacher and psychologist.

As a result, she finally got what she had needed all along. And after a disastrous entry into middle school, Maddie began to flourish, or at least cope better than she had been. We ended up moving her to private school the following year, ironically only after we had finally got her situated properly at the public school. But I guess at that point I saw more clearly what she needed.

If there’s one thing I learned from our experience, it’s that any time I’m revealing any of Maddie’s challenges at school, my goal has to be to get her services. I’m not worried about how she comes off on paper, except when it comes to getting her services. I wish I had undersold her abilities rather than the opposite. It didn’t help anybody.

Perhaps I was in denial that first time. I don’t know. But because of what I consider to be one of my biggest failures as her mother, it is my mission to tell everybody I ever meet who has a young kid struggling at school, and who may be a candidate for extra help:

Do not overstate your kid’s abilities. Do not worry about the picture you are painting of your child. Your goal is to get the help they need. Forget trying to impress anybody. Forget making excuses in your head for why your kid is a certain way. And don’t be in denial yourself. Face the reality of your child, and fight fight fight for help. Expect and demand everything that could help your child.

I know I recently said I wasn’t in the business of giving advice. Look at this not so much as advice but wisdom gained from my own mistakes. I hope somebody else can learn from mine and save themselves some time.

Here’s another regret of mine: I wish I had been a squeaker wheel. That’s a topic for another time.