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Review: Blazing My Trail

  • Posted on November 28, 2011 at 12:00 PM

Rachel Cohen-Rottenberg’s book, Blazing My Trail: Living and Thriving with Autism is a sequel to The Uncharted Path. This memoir picks up where the other left off, providing new information and insights that will help to put the first book into perspective. Most importantly to me, it follows up on her description of burn-out. In my opinion, her new understanding and her recovery were what made a sequel essential. Like The Uncharted Path, this is a self-published book available in soft cover and e-book formats. It’s a text-based book; I do not remember there being any pictures and a quick scan didn’t reveal any.

In Blazing My Trail, Rachel approaches autism from a slightly changed perspective. Instead of focusing as thoroughly on her struggles as she did in The Uncharted Path, Rachel focused on solutions, accommodations and living with autism. The distinction, though subtle, is significant. Blazing My Trail is definitely a book about hope and about acceptance; whereas The Uncharted Path was a book about understanding and accommodation. In the first, Rachel struggles; in the second she thrives.

While I find Blazing My Trail to be a necessary sequel, and I’m very grateful for the book and its timing, I can’t help but feel that something is lacking from the book. The first book stuck with me. I can close my eyes and I can recall the experiences revealed throughout the book. There is an intimacy and an awareness that seems rather lacking in the second. Perhaps it’s just my experience and the distressing nature of my own fears, but I can remember little from the second book after her medication revelation without flipping through the book for a refresher. There is less cohesion to this second book; each chapter seems more distinct from the others. Yet, as individual essays, these chapters are each significant in and of themselves.

Perhaps a second reading will reveal that this feeling of disconnectedness stemmed from me and not from the book itself. At the same time, I cannot recommend the book as a stand-alone experience. Its significance is in direct relation to its predecessor.

Nevertheless, Blazing My Trail is a beautifully written sequel that is highly recommended to everyone who wants a continuation of the story they read in The Uncharted Path.

Imminent Burn-Out? (Part 4—The Next Word and Resolutions)

  • Posted on November 21, 2011 at 12:00 PM

Again, I knew I was adjacent to the autism spectrum, I read about Rachel’s experiences, and I panicked.

The threat to autistic children is real. The threat to autistic adults is real. Combine the two and the threat becomes even stronger. And these threats apply directly to my family. This is why I fight. This is why I advocate. It’s not the only reason, of course. If my family was suddenly safe from all future threats, if we got a pass on all the discrimination and prejudice, well then I’d still fight—because nobody should have to face this kind of threat. But we do. It’s real. Right now, my boys cannot advocate for themselves on this level. They cannot face down CPS and win. They shouldn’t have to; I shouldn’t have to. But I had to and I did, but if I had to do all over again, with the loss of functioning that Rachel described, I would lose. And that possibility is incredibly scary. The consequences for my children are terrifying.

Reading Rachel’s words, I felt this terrible ticking clock hanging over my head. I drive myself hard—too hard. I know that. Everybody who knows me (in-person) knows that. Periods of burn-out, of being too tired to keep up, of running out spoons, of hiding in my basement office to avoid the very loud noises my children make when they’re all playing in parallel—these things are inevitable, and as long as Mark and I are a team and I can keep up my end of the bargain, they’re just part of the flow of our lives.

But what if I couldn’t keep up? What if it wasn’t temporary? What if it stretched on for months or years? Pardon my language please, but my thoughts could best be summed up: Oh shit! Is that going to happen to me?

I kept reading. I finished The Uncharted Path and moved onto Blazing My Trail and…I kept reading, sighing in relief. While I don’t mean to minimize the significance of burn-out, the dramatic shift in abilities got a new explanation in Blazing My Trail. They were due, to a great degree, to a medication she took that made things worse instead of better.

The relief was palpable. I know with certainty never to take that drug. Besides, I’m horrible about taking daily medications. And I try medication only as a last resort—or after significant experience that it will be necessary, such as with bronchitis and antibiotics. And, well, the only time I found a psychological medication (for example, an anti-depressant) that didn’t provide more side-effects than positive effects was when I had that terrible reaction to a birth control shot that lead to a serious case of post-partum depression. The drugs then were just a temporary fix to get me by until the birth control hormones were out of my system and it was only effective because my depression was more poignantly chemical than usual and far stronger than I usually experience.

So, avoid drugs—check.

But, that’s not enough. She also described a plan that helped her regain abilities she’d feared she’d lost forever. It was simply a matter of taking care of herself and being responsive to her distinct needs.

Now, that’s not as easy or as obvious as it sounds. Not for me. I’d always thought that I should be my lowest priority, after family, God, work, school, friends, etc. I knew I had to sharpen the saw and all that…but that didn’t make it a priority, did it? Not really. Certainly not.

This scared me into reevaluating and reassessing the importance of my own well-being. Because, yes, actually, I am a priority. As a caretaker, I need to take care of myself so I can continue to take care of others. It seems obvious. In fact, I knew it, on an intellectual level. Reading Rachel’s story has made it visceral.

So, take better care of myself—check.

I can’t stop pushing myself. There’s too much to do. But I don’t have to push myself so hard that I break. I don’t have to ignore my own needs and well-being. In fact, if I pay attention, I’ll be able to do more, because I won’t get quite so tired.

But, wow, was it a scary, rocky trip—and I didn’t even have to live through it!

Imminent Burn-Out? (Part 1—Where I Stood)

  • Posted on November 14, 2011 at 11:29 PM

I recently finished Rachel Cohen-Rottenberg’s books, The Uncharted Path and Blazing My Trail. I’ll do a full review of each book, I promise, but those will have to wait. Right now I must address one urgent issue particular to those adults who either are on the autism spectrum or those who, like me, are close to being autistic, but don’t quite meet the diagnostic requirements.

As I’ve said before, and will again, I have many of the traits attributed to autism, including sensory processing difficulties, language processing peculiarities (a marked difference between speech skills and writing skills), and social processing difficulties. Were it not for the facts that autism (as it is defined by society) is a disability and that many people with legitimate diagnoses of autism struggle much, much more than I do (including all three of my children) and that I feel expressing my experiences as being equivalent to their experiences would detract from their struggles…were it not for these things I would feel wholly comfortable calling myself autistic.

Before I discovered autism in order to understand my children, I had never really understood what set me apart from my peers. I never understood myself. I’ve never felt I belonged in a community better than I belong with autistic adults. While I’ve always (as far as I can recall) understood that people have different gifts and different abilities, before I discovered autism I’d always more or less assumed people experienced the world in more or less the same way. I just wasn’t very good at coping with it.

Compared to the ideal neurotypical, I’m still not good at coping with it. Compared to the struggling autist, I am quite good at coping with it. And, that’s the thing. As far as I understand current diagnostic standards, I don’t qualify for a diagnosis of autism because I cope too well. I’m not disabled. Sure, coping is hard work. Sure, there are some days when I just don’t want to cope with the outside world. There are days when I dread answering the telephone, and would much rather the person trying to contact me via a letter or an e-mail. Sure, I freeze in social situations most people take for granted. But, when it comes to traversing my day-to-day life, and getting by in the world at large, I can cope more or less successfully.

(This is not some sort of gloating self-congratulatory baloney. There is absolutely nothing wrong with being disabled—except for the lack of acceptance, accommodation, and appreciation from the world at large, but that’s a problem with the world, not a problem with being disabled.)

The point is that I cannot, in good conscience, consider myself disabled. I struggle, but I can cope without the kinds of accommodations others need to cope. Sure, those same accommodations would make coping much less work for me. But I can do it on my own, with my own self-provided coping mechanisms and accommodations. There are many people who can’t and they deserve the focus of the autism community much more than I do.

I’ve struggled to communicate this position of being between to my readers, my family, my friends, and anyone else who has a need to know or who just might be interested. I was confident that I’d gotten it down (though there are still those who want to call me autistic and those who are offended when I consider myself close-but-not-quite).

But, perhaps it was time for my understanding to change.