She Who Can, Crafts. She Who Can’t Craft…Really Really Can’t

Halloween is coming up and Maddie is prepared. Or preparing, anyway. For a kid who loves superheroes and animated characters more than anything, and who makes duct tape swords in her spare time, a special day designated to the imagination and dressing up is maybe better than Christmas.

I have to confess, I’m not sure what her costume is this year. It’s some character from Bleach, the complex anime show she knows in extraordinary detail (which she is happy to share with you whether you like it or not).

Last week she wanted to go to the Halloween spirit store, to which I reluctantly drove her one evening. I sat in the car and she went in with her debit card and bought some stuff, including, you guessed it, a couple of plastic swords. As if she doesn’t have enough.

She has also created a mask of some sort and asked my mom for some sewing help. She doesn’t even ask me anymore. That’s probably because of the costume incident of sixth grade. Suffice it to say sewing hates me as least as much as I hate it. Sewing, in this case, apparently includes using scissors.

The public middle school used to hire a lively, gifted, inspiring woman to lead the kids in an entertaining and educational event called “A Trip Through the Ancient World” or something like that. Kids spent weeks learning all about ancient Egypt, Greece and Rome. Each kid was assigned a historical figure, and they were to memorize a brief biography of that character and, on the day of the big event, dress as that character.

I can’t tell you how much my heart just sinks whenever a craft-related assignment comes home that requires parental help. I didn’t want to spend a fortune buying a costume, either. So I had to come up with something. And fast.

Luckily for me, her character was a Hebrew slave, so her clothes didn’t have to look particularly good or at all fancy. Still, I called my very creative friend in a panic, asking what to do.

“Just buy a piece of fabric, fold it over, cut a whole for the head and sew up the sides.”

“I don’t have a sewing machine. Anyway, I can’t sew.”

“Maybe you could just buy some kind of rope and tie it around her waist.”

Now that’s a project I can get behind, except for the part about going to the fabric/craft store. Nothing like stepping into JoAnn Fabrics to give me a panic attack. I hate it that much. But as a mom, you gotta do what you gotta do.

So I mustered up my courage and drove to the store, ready to get that brown fabric and a rope tie. That was literally all I had to buy. So I found the fabric that looked kind of right, some kind of brown muslin (my mom sewed a lot when I was a kid, so I do know a little about fabric). And for some reason I picked up a smaller piece of muslin in a natural color. I have no idea why I did that, but it ended up becoming integral to the success of the costume. (I use the term “success” loosely, as you will see.)

All I had to do was cut a hole in the middle of the brown fabric so Maddie could stick her head through. Then I would tie the rope around her waist to hold the fabric against her body. Right on! Ancient slave clothes are so easy!

Being the crafty genius that I am, I folded the fabric into quarters so I didn’t have to cut a whole circle. I would just have to cut a quarter circle, open the fabric, and voila! Circle! After I did that, I opened the fabric up to admire my work, and there it was: a GIGANTIC hole that would fit completely over Maddie’s little shoulders, and the whole thing would fall right to the ground. You have got to be kidding me, I said to myself. You can’t even cut a circle right!

It was the night before the event, so there was no time to get more fabric. Luckily I still had an option. That’s where the second piece of muslin came into play. I carefully cut a more appropriately-sized hole, but that fabric on its own was too small for a whole costume, so now I had to actually sew the brown fabric over the lighter fabric so it would both stay on her body and be long enough to work. I was pretty irritated at myself, but I got out my needle and thread (I have had the same sewing kit my entire adult life) and began to sew those pieces together. They stayed okay, but I would say an untrained monkey would have done a nicer job. There were random stitches placed haphazardly on both shoulders. Thank goodness for brown thread on brown fabric, is all I can say.

Fortunately, Maddie didn’t care at all. I am so grateful for that kid sometimes. She could have been irritated or disappointed or embarrassed, but she was not only fine with the final outcome, she was grateful! I sent her off to school with her pathetic excuse for a costume, and she was happy.

I showed up at school along with a few parents to watch this play/game show. Among the beautifully adorned princesses was my shabbily dressed Hebrew slave. Perfect, really, although I have no doubt that anybody from that period would have taken more pride in their craftsmanship than I had. Oh, well. I guess I have other gifts.

Fortunately, the costume wasn’t that meaningful in the end, except that somebody without any costume at all would have stood out. My crappy creation seemed to go unnoticed. I told my friend Laura my story and we both had a good laugh. I may not be crafty, but I can recognize the humor in almost any situation. I really thought the whole thing was hilarious.

Years later, when Maddie is concocting her complicated costumes–for Halloween or Comi-con or just everyday dress up–I am NOT the person she consults. She knows better. If there’s sewing involved, she most certainly doesn’t ask me. At best, I’ll say no. At worst, well…

So this year’s costume, the anime character, is almost done. Maddie came up with the plan and did most of the work. My mom did a little problem-solving and sewing. There is one small task left to do, but I don’t even know what it is because my mom bypassed me and went directly to my husband for this little tidbit. Sometimes being left out is a good thing. For us all.

I’m pretty sure that final job, whatever it is, will complete the costume. What I’ve seen so far is amazing. Maddie really took her time to conceive of and execute this thing. Apparently that gene skipped me.

What I love about Maddie (among a gazillion other things) is not only how much she enjoys the process of making things, but the pride she has once she’s done. She would gladly don her costume for anybody who happens to stop by. She will pose with full dramatic effect. You can take as many pictures of her as you like.

Tomorrow, the day before Halloween, some of her friends are wearing costumes to school. She’s probably leading the effort. I’m pretty sure that even if nobody else was participating, Maddie would still pack up her costume (swords included) and wear it all day long. And she would feel awesome.

So here are today’s life lessons:

I can’t sew, and that’s OK.

Be grateful for your grateful, fearless, creative kid.

Be willing and able to laugh at yourself. Life is so much better that way. 

The Comparison Trap

Recently I learned of another blog by the mother of not one, but two autistic children. I believe they are both in the Asperger’s realm. The particular entry I came upon addressed the problem of comparing our children with others.

My first reaction was, “Oh, no! This blog is better than mine!”

Ironic, no?

Once I got over the ideas that (1) it’s not surprising that I’m not the best blogger in the universe, (2) I might learn something from this woman, and (3) she is right, I began to percolate on the original premise: Comparing our kids is counterproductive.

And this doesn’t apply only to those of us with special needs kids. Nor does it apply only to our kids or our parenting. Comparing is a bumpy road fraught with dangerous pitfalls, but it sure is an easy path to embark upon for some reason. Human nature, I guess. And, I suppose, American culture, which puts the utmost emphasis on working and achieving.

What do you do?” Isn’t that the question everybody asks when shaking the hand of a new acquaintance? I dumped that question a long time ago, preferring to get to that topic down the road a bit. But I have to admit, it IS still the first thing that crosses my mind. I just made a conscious choice to stifle it. But I practically have to stuff a sock in my mouth to suppress the urge.

I don’t know about you, but where I live (and, since many of you are my friends, where you live too), kids are always doing, doing, doing. They’re playing competitive soccer, taking voice lessons, learning Spanish on the side, going to a math tutor not to stay caught up, but to get ahead. It’s a constant state of go. Who you are is largely defined by what you do.

So when you have a kid who’s behind everyone else in many ways, who’d rather sit around and play Minecraft with her online friends, whose only sport developed in middle school in the form of lunchtime basketball (defense only! no shooting!), who is bright but doesn’t especially care about school, who isn’t likely headed to Cal or Stanford and maybe not college at all, how do you define your child? How do you rank your parenting?

It’s really quite simple. You don’t define or rank or compare. You appreciate your children for their unique attributes. You guide your children toward kindness and compassion above all else. You allow your kids to flourish in whatever way they wish, whether it’s on the field, in the classroom, or in a sea of specialty duct tape.

If I were to define Maddie, it would be by her kindhearted nature, her ability to approach anybody with full confidence and no fear, her intense interests, her compassion. What is Maddie? She’s not an athlete, a scholar, an artist. She’s a wonderful human being, that’s what she is. What she chooses to do in her spare time now, and whatever she chooses to do with herself in the future, she will still be a wonderful human being. She will be a wonderful human being who happens to garden, or teach, or write, or do research. She is a person who is, and happens to do.

I can say that now because even thought it’s simple to make this choice, simple doesn’t always mean easy.

It was especially challenging not to compare Maddie to the other kids when she was young. My mothers’ group got together weekly, beginning when Maddie was about six weeks old, and within a few months it became clear that other kids were following the anticipated milestone schedule and she just wasn’t. I wasn’t alarmed at all, but it wasn’t super fun to participate in the conversations about all the cute things the other babies were saying while Maddie was only screaming. The others were sitting up or crawling, and Maddie was toppling over, blank-faced. I would joke about it, as is my way, but it didn’t feel very good to be left out of that conversation in a meaningful way.

I still suffer from that feeling of isolation in a way, often because of the comparison trap. I’ve written about this before: When everybody is talking about what’s going on at our local high school, or the dating thing, or the sports teams their kids are on, and (soon, I’m sure) where everybody will be applying to college, I can’t help but think to myself, Maddie is different, and feel a little sad about it. Sad for myself, I guess, because I’m missing out on certain aspects of life with her, and sad about how disconnected I feel in that moment. When the conversation begins to veer into that territory, and all the women begin contributing enthusiastically, I envision myself shrinking away from them all. That’s how it feels. And it’s all because in my head, I’m comparing our experiences, comparing our children. My child is different. My experience is different. And for a moment that difference is painful.

But that’s my own problem.

And I know it’s my problem because I have another kid with whom my parenting experience is quite the opposite. He was exceedingly verbal at a young age, and he walked before he was 11 months old. He has played on a few sports teams and done fine, although he is not a committed athlete. He’d rather bike around with his friends and play pick-up games of soccer and basketball. He’s very organized, self-motivated, and bright. He once got a perfect math score on the annual achievement test, something I ended up being kind of bummed about because from then on he would always expect himself to live up to that achievement, and be disappointed in his performance even if he only missed a single question. And that has been his experience. He also was the last third-grader standing in the annual school spelling bee, just short of making the next round.

So even though he doesn’t play competitive sports and he only took drum lessons for a year, he’s an achiever. And sometimes I get caught up in that. When he quit playing soccer the first time around and gave up on drum lessons, I was disappointed and maybe even a little worried. Would he ever stick with anything? Why didn’t he want to play soccer and play an instrument, when all his friends are athletes and/or musicians? When he signed up for Little League for the first time at the age of 10, it felt like a lost cause because all the other boys had been playing since t-ball days. He was so far behind! How could he compete?

That first season had a rough beginning to be sure, but it reminded me of something very important, that who he is, is more important than what he does. He didn’t get a single hit until the last game of the season (mainly because he wasn’t swinging), but he kept on trying. He was a good sport. He made friends. He had grit. He had a good time and was willing to learn. The coaches liked his attitude. It wasn’t about his achievement–or lack thereof–but the kind of person he was and is becoming through all of these experiences.

And the same goes for me as a parent. There are so many occasions when I feel like a failure. I have met other parents along the way who chart like there’s no tomorrow, who work for hours each day with their young children doing the prescribed OT exercises that I was too tired to do, who religiously work new foods into their choosy kid’s repertoire, and whose kids are organized, well-behaved, and well-dressed because of those efforts. Do I do what they do? And do my kids measure up, and if not, is it my fault?

In the immortal words of Maddie, who cares?

My adult life, my parenting experience, is also a journey during which I am still becoming. I’m changing and evolving and learning and growing. I am figuring out what’s important to me. I’m discovering my own gifts, and dismissing, over time, an ideal that isn’t worth pursuing.

I, too, was an achiever as a child. What I accomplished was important to me.

But having any child, and most especially a special needs child, turns that idea upside down because you suddenly have so little control over anything quantifiable. How do you judge your achievement as a parent? How do you know if you’ve done well when you aren’t so focused on the doing, but rather on the being?

I guess that’s the good news: You really can’t measure that. So I stop. I stop worrying about what the other kids are doing, what the other parents are doing and how they’re doing it. Or at least I try. I am striving to be a better person, to focus on what matters, to be an example to my kids. I hope I am teaching them kindness and compassion, both for themselves and others. I hope I am showing them how to be a devoted and generous friend. I hope they are learning that who they are matters more than what they do. Actually, I think I’ve been learning that from Maddie all along.

That One Time I Really Screwed Up

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.

Terrible Morning Turns Into Okay Day

A brief update for you all:

Sometime shortly after I posted Monday morning’s blog, Maddie decided to go to school. It was about 11:00. She had missed half the day, but on the other hand, she would be GOING for half the day, so I was all for it.

After four and a half hours of struggling with her, I wasn’t exactly ecstatic, though. I was just exhausted by that point. I guess I was relieved, though.

So we got into the car and drove the 25 minutes to school. She expressed concern about what was going to happen when she arrived. “Is someone going to talk to me?” she wondered. I didn’t know the answer to that. I knew she had to check in at the office, but I really didn’t know anything beyond that. I suspect a discussion about her attendance is impending. She’s had enough unexcused absences to warrant concern. But I’m letting the cards fall where they may. That’s the main reason we moved her out of the private school, after all. I’m not going to interfere.

We had a pleasant ride to school. Might as well make the best of the remainder of our day, I figured.

We finally arrived, and when Maddie was just about to get out of the car, I had a realization.

“Maddie, I wish this morning had gone better,” I said, “but I’m proud of you for turning it around. I know that’s hard for you.”

I was so glad I both thought of that and said it out loud. She needed to hear it. Small victories, you know. Maybe the morning sucked, but the typical story is that she decides she’s not going to do something, and she’s stuck in that mindset. It’s frustrating as all get-out, but transitions are probably the most commonly difficult challenges for autistic kids. And she somehow transcended that challenge.

Maddie got it. She thanked me. She looked relieved. I knew she was probably nervous for what awaited her when she got to the office, but she picked up her backpack and held her head high as she said goodbye.

It really was a terrible morning, but sometimes it’s those challenging times that bring about the best moments. I remembered to praise her for what she did right (yay for me!), and she was proud of herself, too (yay for Maddie!). She did something almost impossible for her. And now we both know it’s not, in fact, impossible. It will still be hard for her to redirect herself, but as I always say to my kids, “It might be hard, but hard is okay. Is it impossible?” I ask that knowing, of course, that whatever is in question is NOT impossible.

I don’t know what’s in store for tomorrow, but I hope that whatever it is, I can find something to be thankful for.

Back to School Night

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.