special needs

The Magic of Tuesdays

Chris Irvine, Parent Coach1 Comment

Well, at least this Tuesday was magic.

The prior two Tuesdays, Maddie wouldn’t go to school. At all. My friend mentioned last week that Tuesdays are hard for her, too, because she really felt like the week was underway but there’s still a lot of it left. She really feels the work load of the week on Tuesday. I guess the weight of the week feels heaviest at that point. I’d never thought of it that way. Maybe that’s also true for Maddie. I don’t know that she could articulate it that well (my friend is an EXCELLENT articulator of her feelings), but it’s an interesting theory.

Unfortunately Tuesday will always be Tuesday. It will almost always be the second day of the school week, and likely the second day of her work week, so there’s no way around it. However much you might hate Tuesdays (or Mondays or whatever), you still have to get up and go. You have to do it anyway!

Since Monday was a day off, Tuesday was more like a Monday this week, and now it’s a Wednesday, so it seems we have escaped the Tuesday problem for once!

I will call the last two days successes on all fronts. Yesterday was a bit stressful as Maddie got up at the last minute and I had to put her shoes on her feet and tie them, in the interest of time. And homework was a little bit of a struggle because we were both pretty tired in the afternoon.  Even though yesterday was a bit stressful, I got her to school, which is my ultimate goal. And I didn’t have to lose my temper, which is a close second. Maybe they’re tied for first!

Today she got up in plenty of time and we had a leisurely morning. She was able to sit and eat breakfast and brush her hair and go outside before her taxi came. Woohoo! And then this evening she did her homework willingly, took a shower when she was asked (there were a couple new rolls of duct tape at stake, which helped). And she even stopped in the middle of an important project (using duct tape, of course) to get ready for bed. She was cheerful and cooperative and adorable and charming. Right now she’s upstairs singing loudly to a Florence and the Machine song. Life is good.

Maddie doesn’t know why she was motivated today, so there’s no way to know how to repeat our success. I just rejoice in the good days, as always.

Of course I’m kidding about any magic being involved with any of this. Everyone has good days and bad days. We all hesitate to get out of bed sometimes, or eschew responsibilities because we’re just not up to taking them on. There may be an identifiable reason. Or not.

We’re working on pushing through those times. Just doing it anyway.  I guess those are the days I should really rejoice in–the ones when she’s reluctant and tired but gets up anyway. When she’s too tired, but does her homework anyway. Those are the days when Maddie will learn grit, and learn to do it anyway.

When she was younger, writing anything at all was probably her worst enemy. I think there were just too many aspects to conquer – both thinking up what to write, and then the physical act of writing it down. Her fine motor skills were weak and her pencil grip was terrible, so her hand would get fatigued quickly. And abstract thinking of any kind was nearly impossible for her. So when she would come home with a writing assignment, the homework session would inevitably dissolve into panic and tears. A blank piece of paper was the worst possible thing she could face.

So I figured something out to help her: Fold the piece of paper in half. Then the blank paper looked more manageable. I called it “Maddie-sized.” That seemed to relieve some of the stress, at least enough to allow her to write down something. Anything, even if it wasn’t much or wasn’t particularly good. My goal was to get her over the hump, to let her build enough confidence to not be so paralyzed by this very important activity.

Over the years, she has developed a passion for writing. Can you believe it? She still isn’t crazy about expository writing, or any kind of compulsory writing. But she spends her time in the taxi writing stories on her phone. It can be an awfully long ride, so I offered to pick her up from school instead, but she insists she likes it. She enjoys the writing time. That is what I call a success!

And that is how I look at our journey together. Success doesn’t lie in the things that come easily. It also doesn’t necessarily lie in conquering something, achieving anything, or winning anything. Success comes when times are tough and you make it through. When you think you can’t do something but try it anyway. When you are afraid, and then you try it and eventually find out you might even like it.

It also comes in building a solid relationship with your kid. “You’re adorable,” I tell Maddie. “You are too,” she says to me. She smiles and hugs me tightly, making sure both of us are standing up for the maximum possible contact. We squeeze each other. We appreciate each other. And we both know it. I guess if I never make any more progress with Maddie, I can still be proud of that. And happy.

So this week has been successful. I’m happy and proud and hopeful. More successes will come if we keep trying. Maybe this will be one of those times when good days turn into an entire good week. But if not, that’s OK. We’ll keep plugging away.

Back to School Night

Chris Irvine, Parent Coach2 Comments

Last week I went to Back to School Night at Maddie’s new school. I gave myself almost 90 minutes to get there, even though it’s normally only a 20 minute drive, because I had to travel in prime rush hour. I hate to be late, especially when my destination is out of my comfort zone. I didn’t feel like going at all because I’m so exhausted but it seemed important to at least set eyes on the new adults in her life. If they’re offering information, I’m taking it!

I parked a couple blocks away for an easy exit and headed to campus nearly 30 minutes early, thinking I’d be the first person to arrive. Well, the school was already buzzing! Parents and teachers were gathered in small and large groups, catching up with each other, munching on burritos they were selling to feed all those people who probably came right from work. I looked around. I didn’t know a single person. Not even a familiar face. I was a little overwhelmed, to be honest. I am so entrenched in my local school community, I haven’t felt this sense of newness and cluelessness since Maddie started kindergarten. Where are my people? I thought. I need my people! 

I became very aware of how Maddie must feel there. Nearly a thousand kids, very few of whom she knows, crowd the halls between classes, talking, going from class to class as if they’ve done it a thousand times. Because they have. New teachers who don’t know her face. A whole established community with a long history of which she is not a part. That was me. Hundreds of parents who knew each other, jamming up the halls, making it difficult for me to get around. Up the hall, down the hall, across campus, and back. I was uncomfortable and self-conscious and subdued.

Before the parents set off to meet the teachers, everyone convened in the gym for a welcome. The principal and various other administration personnel and volunteers made short speeches, and we were off to follow our child’s schedule for the evening. Ten minutes in each class. I’d only been on that campus maybe three or four times, so I wasn’t sure where everything was. A number of times I approached a student for directions. Where do I go? Where is the bathroom? When is this over?  I bet those questions have crossed Maddie’s mind a few times.

My first visit was to Maddie’s special ed class. I’ve met Mr. L several times and exchanged emails and phone calls. I know him a little, and he knows me. Oh boy did that feel good. Also, he’s such a wonderful, concerned, flexible, engaging, kind person. Yes, I thought. This is good. I am relaxed. I’m sure Maddie is too when she’s here.

Then it was off to geometry, drama and PE. Three fabulous teachers who are clearly passionate about what they’re doing and seemed to be fun and engaging. Then back to Mr. L’s class twice. There I finally ran into a couple I’d met once before. Phew! Somebody I know! Finally, the moment I’d been waiting for, science class. Maddie LOVES her science teacher, Mr. K. She loves science already, so having an interesting teacher with whom she really connects might spark her interest even more. That’s just what she needs! A spark of interest to motivate her.  Last week she brought in two of her homemade swords (duct tape!!) to show him. Clearly they have something special.

At the end of the evening, I was elated. This is a special school. There is a real passion for teaching and developing students and preparing them for success. Maddie’s primary classroom is safe, comforting, and accepting. And even though I’m not yet a part of it, I sensed a strong sense of community there.

As we move through this school year, I know we will have good days and bad days. Sometimes I will feel confident and secure in Maddie’s future, and other times I will feel discouraged and wonder what we should be doing instead. I may look into alternatives sometimes. Other times I must just lock myself in my room, close my eyes and breathe. What I should do is revisit this blog post. I need to remind myself that anybody might feel overwhelmed sometimes at a big new school, so that I can have both patience and empathy for Maddie. I also need to remember that Maddie is indeed in good hands when she’s not at home.

Here I am, three weeks in, still hoping and not knowing what will happen tomorrow. But I did get one thing I hoped for, and that is a good, safe place for my daughter. Now I hope the rest falls into place.

That Weird Time She Said Something, and Then Nothing

Chris Irvine, Parent CoachLeave a comment

One thing you quickly learn about parenting an Asperger’s kid is you really just never know what they’re going to do. Yesterday I eagerly asked Maddie about her second day at school. The first day was a celebratory kickoff to the school year, without any real classes to attend. Instead there were a couple of inspiring speakers and a barbecue party. So the true experience was delayed (although it certainly says something about a school that it begins the year like that).

I asked Maddie which classes she’d had and which teachers she met. Trying to remember what her schedule was that day, I asked, “Did you meet your math teacher? It’s a woman, right?” Maddie is great at math and has geometry this year. I loved geometry, and I think she will too, so I’m particularly excited about this class for her.

“Well?” she began. “I got confused, and instead of going into room 225 I went into 223.”

Easy fix, right? Notice you’re in the wrong class and excuse yourself and go to the right one.

“I had a funny feeling the whole time because the teacher had a different name.”

“Did you go to the right class?”

“No.”

“Did you talk to the teacher?”

“No.”

“Did she take roll?”

“No.”

I surmised from her short description of events that she wondered for an hour why the teacher in the front of the classroom wasn’t the teacher on her schedule, and upon leaving the room at the end of the period, discovered her mistake. Her solution was to shrug it off for the day and go to the right class next time.

Head slap!

Naturally, I got a call and email from the attendance person. I hope I’ve addressed the issue properly and she doesn’t get an unintended, unexcused absence on her second day.

Maddie is crazy-book-smart, but sometimes her common sense is up in the clouds. And she does something head-slap-worthy.

On the other hand, sometimes she does something equally surprising on the other end of the spectrum. Something extraordinary.

When Maddie was 18 months old and still nowhere near talking, we decided to teach her some sign language to bridge the gap and relieve some of her (and our) frustration. Surely all that screaming was an attempt to communicate the myriad thoughts in her head. She could finally use her hands to do some of the work.

So we bought a book to help us along. We’d look up signs so we could all learn together. After some time, we all knew more than 100 signs. My favorite one was “please,” which involves placing your hand in front of your chest and moving it in a circle. Maddie, in such a Maddie way, gave that sign kind of a shorthand. She would just quickly and casually brush her hand across her chest, as if knowing she had to say please but not willing to put much effort into it. That always cracked me up.

Another sign that was especially important in our lives was the sign for “lights.” Goodness gracious, was Maddie obsessed with lights. I think babies in general find them pretty interesting, but in true Asperger’s form, Maddie’s passion for lights was unsurpassed. Fans were also pretty exciting. We made up our own sign for “light,” kind of a flashing movement with our hands. Open, close, open close, facing forward, hands out. There was a lot of “talk” about lights. If we entered a restaurant and a single light was out in the far corner of the place, I would be immediately informed. Maddie was On It. Lights, lights, lights. Let’s all talk about lights.

So important were lights in our lives that the made-up sign was the first sign we taught Maddie, before we even got the book to help us along. She was still screaming a lot, but at least lights were something she could discuss in a quieter, more socially acceptable manner.

About a month into the sign language experiment, I took Maddie to my parents’ house for a visit. My older sister Becky and her family were living there at the time, so we had a great afternoon with the cousins as well. They all adored Maddie from the beginning and were pretty excited to begin the sign-language journey along with us. Being quite familiar with Maddie’s love of all things lights, Becky was excited to talk to Maddie about them. “How do you say ‘light’?” she asked, looking for the sign we had taught her.

“Light,” said Maddie.

Until that moment, she had only ever screamed. But there we were, Becky and her kids and me, all staring at this up-until-that-moment nonverbal kid. And clear as day, she had said “light.” If I hadn’t been there myself, I never would have believed it. But she had said it.

And then for the next six months, she didn’t say another word or utter another recognizable sound until the day, at 25 months and 2 days of age, when she finally said “mama.” For those six months, there was more screaming, and thankfully, a lot more signing.

Such is life with an Asperger’s child. You brace yourself for the missteps (like the time she entered a neighbor’s house through the dog door, and we don’t even know these people), and rejoice in the beautiful moments you never saw coming.

In this year of hoping, I will try to focus on the rejoicing.

Hoping and Knowing

Chris Irvine, Parent Coach9 Comments

This is the year I have been waiting for. And by year, I mean school year, because as a mom that’s how many of us view the calendar. The “year” starts in August and ends in June, and the months in between, AKA summer, somehow find their own way of existing outside of The Year.

This is the year my daughter turned 15. She is about to start her sophomore year at a public high school after spending three years in a private school for kids with special needs. Maddie has Asperger’s Syndrome, what is now no longer considered a separate diagnosis from Autism. My fingers are crossed so hard it hurts. I want her to make friends, find her passion, somehow become more organized and motivated so that she lives up to her great potential. Mostly, though, I want her to get up in the morning even when she’s tired, and take showers at a reasonable interval so she doesn’t stink.
I lied before. This hasn’t been “the year that I’ve been waiting for.” Not really. I don’t think in years. Not until just now. Because life as the mother of a special needs child is best taken day by day.
I get up in the morning, hopeful but knowing exactly how it’s going to start. I will wake Maddie up gently, with a loving hug and a back rub, and now perhaps a tail-wagging puppy. I will tell her what time it is, place an outfit on her bed with a can of deodorant right on top so she’ll remember to use it. I leave, hoping but knowing this isn’t the end. I go to the kitchen and make her breakfast and then return to her room for another wakeup. She is unmoved, wrapped in her blanket like a caterpillar in a cocoon.
“Maddie,” I say gently, “it’s time to get up now.” Silence. “Maddie, it’s getting late, you need to get up.” Silence. “Maddie, please just make a sound so I know you’re awake.”
“Mmmm….” she finally utters.
“I made you some eggs. I have to go work on your lunch now,” I say, trying to hide the frustration in my voice. Maybe successfully, maybe not. “Please get up. Everything is on your bed. Don’t forget deodorant.”
I leave again, once again hoping and knowing. This goes on until a panic starts to set in. Most days my husband takes her to the van stop on his way to work. The van will be full of kids, waiting for Maddie to arrive because everybody else was on time. Maddie will be late. Again.
The scene almost always dissolves into mass chaos, with me running around, yelling at Maddie, often hastily shoving her shoes on her feet and tying them for her. Even though she’s a teenager and perfectly capable.
Her hair is unbrushed AGAIN. Most likely greasy because I couldn’t get her to shower the day before. Her dandruff is getting really bad. She isn’t wearing the pants I put out, but instead has chosen a pair she likes better that are smeared with dried avocado. Maybe she did her homework. Maybe she didn’t. Maybe she did it and it’s now under her bed somewhere. I am yelling, my husband is yelling. Somehow they get out the door, her breakfast in her hand. By 7:45 a.m. I feel emotionally depleted, defeated. Again. I didn’t cry, though. I don’t cry much anymore.
At least this is the story up until now. Tomorrow is the first day of her sophomore year, and this is the year I am determined to help her become more self-reliant, self-motivated, even a little more organized. I am counting on her school to hold her accountable in a way her sweet little private school did not. I also know that if we can’t achieve some success, the last resort is a therapeutic boarding school. I will have actually been defeated as a mom, now willing to give her to somebody else more qualified to teach her how to be a grownup. I don’t want to send my child away, but we have to do what’s best for her. For now, we are counting on this new environment to be successful.
So tomorrow is a new day. It’s a big day. But it is still just another day. I am hoping, but not knowing. Not yet.