Hello readers! 

Today I have invited my sister Marie Millard to write a guest blog. She’s a creative and talented fiction writer and blogger. She also has a 14-year-old daughter (my daughter’s BFF) who has autism. I adore them both.

You can buy her book Anaheim Tales on Amazon, and read her blogs at:

<https://wereyoualwaysthisfunny.wordpress.com&gt;

<https://mlmillard.wordpress.com&gt;

Enjoy!

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Dear Life, Please Imitate Art

Before I self-published my novella, I knew that I should try to develop a following through blogging, but I didn’t know what to blog about. Blogs about writing are a dime a dozen, even figuring for inflation since that phrase was coined,* but I didn’t know much about anything else. Anyone want to hear about my trombone performance degree? I didn’t think so.

I kept pushing aside the obvious answer. The obvious answer was parenting, and parenting a child with a specific, hot-topic diagnosis. That was something I knew all too much about.

But I knew that if I blogged about parenting, I would either limit myself to hilarious, palatable stories (my daughter wanting to be called “Eight,” for a few weeks, and my trying to yell “Kate” at the park so that I didn’t sound like, well, someone who would name her kid “Eight,” but making it sound enough like “Eight” that my daughter would respond) or I’d fall off the cliffs in the other direction, baring my naked soul and then regretting it (I had the drowning dream again).

And so I stuck with a writing blog. Few read it, and that’s okay. I prefer to spend time on my fiction, anyway. I’ve written several novels, but although I’m sending most of them out to agents and publishers, one of them I decided to put up on CreateSpace because it’s only 115 pages, and I knew no one would be interested in publishing a book that short.

Anaheim Tales began when I was reading The Canterbury Tales. Basically, in The Canterbury Tales, a bunch of people have a storytelling contest, many of them insulting each other through their fictional tales. I thought, “I’m going to write a version for and about modern day teens.” So I did, and one of the themes that emerged was that you can learn a lot about a person when they tell a fictional story.

One of the background characters in Anaheim Tales is a girl who doesn’t say much, who skips when she’s happy, and who loves kittens. The narrator, Geoffrey, notes that she seems younger than the rest of the seventeen-year-olds, even though she’s seventeen, too. But beyond that, I did not draw attention to her. I didn’t mention a diagnosis. I let the characters behave the way they chose (yes writers do that) and they in no way bullied or looked down on her. In fact, they tried a little harder to spare her feelings than I would have hoped.

It was only in writing this guest blog for my sister that I finally applied the theme “you can learn a lot about a person when they tell a fictional story” to myself. What did my book say about me**?  I may not have blogged about parenting, but hidden in Anaheim Tales is my deepest desire. A young-hearted girl, flitting around in the background dreaming of princesses and kittens, being treated with kindness and respect, as if “It’s no big deal. That’s the way we all treat her.” Dear Life, Please, please, imitate art.

*Dime? Coined? Never mind.

**Don’t say “that you’re a mediocre writer.” It might be true, but it’s not very nice.

I’ve written before about the importance of connecting with other parents of special needs kids. On days like yesterday I really feel it. It helps to feel a sisterhood or brotherhood with parents who have similar challenges, even if they’re not exactly the same.

Yesterday, though, I was feeling particularly challenged by the school refusal thing. A friend asked me, “Hasn’t the school had kids like Maddie who also refused to go to school?” My answer: “I don’t know.”

Throughout our experience with the public schools, it always appeared to me (and to my surprise) that Maddie just stumped her teachers. I thought for sure that the teachers who’d been working for 20 years or so must have seen it all. But she always presented as an enigma, and nobody knew what to do with her. Even at her special school, in which every single teacher has a credential in special education, she seemed to be a special challenge in some ways. I think it’s the dichotomy of her natural abilities and her failure to perform, and how her ability to perform fluctuates wildly from one day to the next . Even so, is she really the first kid like this?

When things go particularly awry, my best coping mechanism is to feel useful, to actually do something in an attempt to make even a minute change. So yesterday, when I was feeling especially defeated and somewhat hopeless, I spent much of my time trying to research boarding schools for teens with Asperger’s. It was a waste of a few hours. There are very few schools, and most of them also take kids with emotional and behavioral issues. I don’t think that’s the right environment for her. So that was an unsatisfying endeavor.

Then I changed course and Googled “my Asperger’s kid won’t go to school.” Maybe I’m jumping the gun on the boarding school thing, I thought. Maybe somebody else can shed light on a solution or at least their own experience. Most of the information about this phenomenon (called “school refusal”) focuses on social anxiety and other emotional factors, such as coping with bullying, that might contribute to attendance problems. I know Maddie. That’s not what’s going on. She’s tired in the morning, home is relaxing, and given the choice, she’d rather not do anything at all.  Well, she’d really prefer to watch TV or play Minecraft, but even though that was out of the question, staying home is just easier. I’m not saying the transition from a tiny special school to a bigger public school isn’t cause for some trepidation, but I am confident, as are her teachers, that she is more than ready for this. She just has to do it, and give herself time to adjust.

I eventually discovered a website called <myspergerschild.com>. I read its article about school refusal, and as I scrolled through the comments section, my heart nearly exploded. A mom wrote in about her own teenage son. He also refused to go to school, simply because he didn’t want to. Finally, a kid just like mine! Here is what she said:

My son is 15 with Asperger’s and also school refuses. I also do not think it is [social anxiety] – he just doesn’t want to go to school. He doesn’t see the point and no amount of discussion will change his mind. He is another one who is 6ft tall so there is no way you could get him there against his will (and I don’t think that would be appropriate even if I COULD just pick him up.)He currently attends a small support unit with only 10 other students and all the understanding you could give a child but some days he just doesn’t want to go in.There is no fear there for him, and no attachment problems as he happily would go to his friends’ houses. The way I see it, he weighs up rewards and costs. Some days he wants a reward (eg cinema trip) enough to go in, and on other days you could offer him £500 and he wouldn’t budge. Although he’s very clever, the promise of a good GCSE result seems too abstract and too far away to be a motivator at this moment in time. He thinks he can learn anything important and worth knowing,from a computer or the TV. Of course, none of this understanding actually helps get him into school or gets him the results he’s capable of or gets the LEA off our backs when he doesn’t attend! Also, being threatened with court action for non attendance makes life very stressful for us but makes no difference to him – he has AS, he would only notice when the internet gets cut off or his dinner wasn’t made!”

Seriously, this is Maddie (except she’s much shorter). The weighing of ewards and consequences and near immunity to both, the inability to grasp anything that’s delayed because that’s too abstract, the rigidity in her thinking.

I wish I could identify the writer. I want to talk to her. I want to hug her and thank her for speaking up. Even though she doesn’t offer any solutions, it feels so much less lonely knowing there’s somebody else out there with the exact same problem. It’s so comforting. She’s obviously in the UK somewhere, too far away to meet. I would bet there’s somebody who lives close by who is having a similar experience. I hope to find them. I hope we can help each other somehow.

So in the absence of a solution, I was at least given some peace in knowing we’re not the first, not the only. And then today happened. She got up and went to school.

I never thought of Maddie as having a disability, even after her Asperger’s diagnosis. So it came as a surprise to me when she used that word to describe herself.

When she started at the special private school a few years ago, she would come home and tell me “Ruby has ADD” or “Michael has dyslexia.” It reminded me of what it might be like to go to prison. “What are you in for?” I thought it was kind of funny, and I also loved the fact that the kids weren’t embarrassed to share these parts of themselves. They could be fully honest about their challenges and not fear being stigmatized or bullied or ignored. How refreshing!

So a year or so ago, when she referred to herself as having a “disability,” I was taken aback. “Disability?” I said. “I never think of you like that.” I really don’t. She is a kid who functions in a certain way, and has trouble in some areas, but I think it’s the prefix “dis” that really bothers me. It implies “can’t” and I have a hard time thinking that she is fully unable to do anything.

I’m not entirely sure at the moment if my attitude has served me–or Maddie–well.

When Maddie was in sixth grade, she was still in public school. She had gone to our lovely neighborhood public elementary school since kindergarten and was in her first year at the public middle school. And then the shit hit the fan. Academically she was literally failing, and socially she was struggling as well. Then one day she got in the car after school and said, “I don’t want to go to school anymore.” My heart sank. She had never said that before, and I never wanted to send her back there again. Home schooling was out of the question, so I immediately sought out an alternative.

My first choice was a private school with a sterling reputation in a nearby town. It’s a small, sweet school that does well accommodating kids who have learning differences. I absolutely loved it. So I rushed to complete the applications, wrote a heartfelt essay, and scheduled a visit for Maddie. She also fell in love.

I waited eagerly for the acceptance phone call, keeping my phone attached to me so I wouldn’t miss the good news. Well, it wasn’t good news. The board of admissions felt they couldn’t adequately provide the support she needed. I should have known. Her essay was no essay at all. Her handwriting looked like she was in first grade. And who knows what her teachers had said about her in their letters? Her teachers loved her, but she was an especially challenging student, particularly because she wasn’t getting any help. I was devastated. I sobbed and sobbed, heartbroken for me and for Maddie.

And then, maybe 10 minutes after that disappointing phone call, I realized something: This is information. And that information is Maddie needs more help than I thought. It was a startling epiphany, and I felt new sense of sadness and pain. I felt guilty for not having realized this before. After all, I’m so in-tuned with my children. How could I have not been more realistic? But as I tend to do, I moved onto the next thing. No use dwelling in sadness. I had heard of a special ed school nearby as well, but I had thought she was too advanced for that. In fact, it was a nearly perfect fit. And that’s where she went the following year.

Maybe if I had equated Asperger’s with “disability,” I would have moved her to a new school sooner. Perhaps I wouldn’t have wasted time with the public middle school and then trying to get her into the other private school. Perhaps I would have better recognized what Maddie can and can’t do.

I’ve just always thought of these “can’ts” as “can’t yets.” It’s that hope thing again.

Certainly there are times when I realize she just can’t do it, like when I give her three things to do and I have to write them down to help her remember. They are usually regular, everyday things like: Take shower, brush hair, do math. You would think I wouldn’t have to add “brush hair” after “take shower,” but if I don’t, she will never think of it. She can remember all the states, but she can’t remember to brush her hair. She actually can’t, at least not yet. Is that a disability? I don’t know. Probably.

She can’t always do her homework, or get up in the morning. She usually can’t try new foods (scary!) or remember to wash her face or put her dirty clothes in the hamper or watch the clock. But I still think of these as can’t yets.

Often in the course of a day, I go from hope to despair and back again. And maybe back again.  It’s an unpredictable, unstable emotional roller coaster ride of epic proportions. I suspect it’s a lifelong roller coaster. Can she or will she (insert abilities here)? It remains to be seen. In the meantime, I’m doing everything possible to get her to can.

You might have noticed that one of my mantras is “tomorrow is another day.”

Yesterday was so beautiful with my son taking up the charge to get his sister to school, and her recognizing the love that represented.

Forget all that. This morning she’s back to not going to school. Not because she’s tired, though. Instead, she now tells me that she doesn’t like this school because it’s not “close” like her previous school.

When I say “tomorrow is a new day,” I realize it might not necessarily be better than today. It might just be a new day with the same crap. Or worse. Today is a new, worse day.

The private school Maddie went to for the last three years has only 80 kids in 12 grades. About a third of the students are in the middle school as that’s when “the wheels come off,” as the admissions director told me. The high school is tiny, maybe eight kids per grade. And she was a star over there, academically ahead of most kids, full of spirit and sweetness, known and loved by all. I realized it was no small thing to remove her from that environment, where she really blossomed into a self-confident young lady. But this unusually small, close, sometimes overly indulgent community was precisely the reason she needed a change. The world isn’t like that school. She is 15, and I believed a slightly more challenging, although warm and accepting, environment, where she is still taken care of, was right. A place where she would fit in, have fun, and be held to a higher standard. I still think it’s the right choice. It’s a wonderful school where the kids pride themselves on their quirkiness, where acceptance is encouraged and expected. She also has a great special ed teacher almost half the time, and his class is a community unto itself. And she had some friends there already. Perfect!

Yesterday morning started out rough, but as usually happens, she ended up having a good day. She said those very words. She might have even said “great day.” She was cheerful and happy and easy. Then the morning comes, and she slides back down into this pit of despair. Tears and everything.

So after this morning’s pronouncement, I give her a long list of reasons why going to school is a good idea. Remember yesterday? You didn’t want to go and then you had a great day. It takes time to get used to a new school. You just have to find your niche. Going to school is legally required. Let’s talk to your teacher and he will help you. Okay, not him? How about a counselor? That’s their job. You don’t trust them? Why? This is the best school around here for you and we have to make it work. The only other option is a school that’s far away and you would live there not here. Do it for your brother! Even that doesn’t work. One day it did. The next day, nope!

She tells me yesterday wasn’t so great. She was lying about that, she says. I don’t believe that, but maybe that’s true. I don’t know.

Now what? I have emailed her teacher. I have emailed the educational consultant with whom I discussed boarding school. I can’t believe we’re two weeks in, and this is where we are. I need that plan B right now. I had intended to be prepared for this. And yet I’m not.

Tomorrow is a new day. Will it be better? I hate to say it, but probably not. I hope so, but I’m not optimistic. I don’t believe that things magically work out. You have to make them work out. There is effort involved in these things. But I’m not equipped for this. I don’t know how to make this one work out. I hate that more than anything. Hope is the theme this year, and I’m having trouble with it at the moment.

So I take some deep breaths and get to work.