August 2011

Colon Blow

by Mary on August 17, 2011

[Tim: Mary tells her story about everything that happened over the last few weeks that I first posted about in "When Medical Emergencies Attack Your Spouse".]

Towards the end of June, my tummy started to hurt a little. By the beginning of July, it was a bit more bothersome, and on July 2, I had a really bad night. I assumed this was another diverticulitis flare, and told Tim I was going to go to the ER and probably get some oral antibiotics, and come home. The doctor told me it looked REALLY minor, and that 10 days worth of antibiotics would take care of it.

Except, the pain wasn’t getting better, and in fact got worse. I lived with it until the next Sunday… and then called my parents to say that I was going to the ER, that I would probably be put into the hospital for IV antibiotics, and could they please come and stay with the kids. I packed my little overnight bag with some pajamas and a pair of clothes to come home in, and off Tim and I went. The CT scan confirmed that the really minor place looked a goodly amount worse, but again, I figured there would be IV antibiotics, and I would go home.

I spent the next few days attached to IV antibiotics. My parents brought Dale Jr. to visit on Monday, and he climbed onto the bed and we snuggled. Everyone was very careful to keep him from doing me any damage, but I just hadn’t really started feeling better from the antibiotics yet.

On Tuesday, the surgeon came in and started up about surgery again. I looked at the man and said, “Look, you’re a surgeon. Everything looks like it needs cutting to you. I want a second opinion… by a gastroenterologist.” Enter the gastroenterologist on Tuesday afternoon, who began our conversation with “I haven’t read your chart.” I immediately bristled, and then calmed down when he continued, “Because I don’t want to be swayed by other doctors’ comments; I only looked at your scans.” I looked at him for a minute, and then he sat down in the bedside chair and sort of sighed and said, “You need to have this surgery. This place looks pretty bad, and it’s not going to get better.”

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This is a post about how we can make good decisions about therapies for our children. But first, I need to set the scene a bit.

The details of your story and ours may vary, but the emotions from which most all parents make decisions about therapies are very similar. I believe you’ll make better choices about therapies for your child if you grasp where you are emotionally with all this. Once you do, you’ll be able to decide from a position of strength and know what warning signs to look for, a list of which I include later in this post.

Our earliest days in therapy with our J-Man – starting with feeding therapy around nine months old – had one consistent theme.

We figured that at some point it would end. He’d learn what he needed to learn, and we’d move on. Therapy was merely a detour in his childhood development. He’d figure out how to eat and overcome his sensory issues, and we’d get back on the road with life.

Almost everything at that point sounded so foreign to us, as it does to everyone when they first get on this road. If it didn’t seem invasive or completely hokey, we at least considered it. We got him the various array of standard therapies for issues with names I’d never heard of, which was admittedly about everything at that point.

You always start out in near total ignorance. We did plenty of research and learned that a surprising percentage of people – kids and adults alike, including Mary and me – struggle with feeding issues, sensory overload, motor planning challenges, and the like. For a while, it was all very interesting, like some research project. The various things we read said he’d likely either grow out of his sensory and eating issues or retain some level of them, but with therapy and some effort he’d be able to adjust well. Sounded OK to us.

But we sorta skipped over the parts that said that other issues may be going on along with the sensory challenges. He was a loving child who’d been late on a few milestones – OK, so a lot of milestones – but no big deal, we thought. He was just having a lot of sensitivities and difficulty figuring out the world. A lot of us do. In hindsight, it’s easy to see everything we missed – or that we refused to see – back then.

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The recently-released Look at My Eyes: Autism Spectrum Disorders: Autism and PDD-NOS fills a much ignored gap in the growing abundance of autism and parenting titles now out there. This is author Melanie Fowler’s first book, and her insights and advice together with her husband Seth’s perspectives sprinkled in earns a spot on the short list of books parents who are either just receiving an autism diagnosis or concerned about it should have.

Look At My Eyes is in comparison to many other autism books positively svelte at 160 pages, which becomes one of the book’s greatest strengths. It’s common for books about autism to go into many levels of detail or contain copious background information, neither of which may actually be needed when parents are struggling in the early days of a diagnosis.

In hindsight, what we most needed during that time was something direct, honest, and boiled down to the essentials of what we should think about doing next at that moment. We didn’t need the whole bible, just a couple of chapters to get us started. We were too tired and overloaded to think clearly or read a ton of books back then. The Fowlers have identified the needs of this audience and distilled volumes of advice into a jam-packed book.

There are a number of online resources that offer information for this same audience – such as the 100 Day Kit from Autism Speaks – but many of these, while certainly informative, can seem rather clinical and emotionally distant. There are times you simply want to hear it from someone who knows what you’re going through, someone who’s spent a month of days cleaning poop out of the carpet and fighting with county bureaucrats on the phone. Look At My Eyes isn’t a replacement for these other resources but a complement with an understanding voice from an author who’s been down the same road as you.

If you’ve been at the autism and parenting gig a while, there may not be much new ground here for you. But I think that’s really a good thing. Too many autism books try to be everything to everybody and in doing so may not be enough for anybody. What we need now are more targeted, niche books about autism that help us addresses specific issues without the time commitment required for the hefty volumes out there. The big books, of course, fill a critical need, but often we just need to get the info and move on. It’s hard to do deep reading while you’re exhausted or constantly trying to keep your kid from escaping out the front door.

Melanie Fowler does a wonderful job weaving her personal experience and story with specific steps to put on your early journey with autism to-do list. She provides some real-world scenarios and how to work through them. Her words provide a mixture of understanding, empathy, and a swift kick in the butt. I especially appreciated the latter. We tend to treat parents with kid gloves in the early days, and obviously there’s plenty of need for understanding and compassion during that time. But there also comes a day when it’s time to put our fears on the back burner and get our tail ends in gear.

Her husband, Seth, provides his insights as a father in the “Seth Says” sections sprinkled through the book. He explores some fundamental father/son issues that could easily become another book in themselves. As men and dads, we can all be rather hit or miss about how well we deal with our emotions. We can easily get invested in our original expectations for all the ‘dad things’ we wanted to teach and do with our children, something that may or may not happen when your child has autism. Given that most autism and parenting books are written by moms (men who write autism books are often doctors and researchers; dads are very underrepresented), Seth’s insights are a refreshing addition.

I think if you pulled ten experienced parents and experts out at random, you’d find most of them nodding their heads and saying, “Yeah, what they said” to the vast majority of advice the Fowlers offer in this book. There will always be areas in which parents have differing perspectives. For example, from the lens of our experience with autism, I don’t have quite the same glowing views of ABA that were in the book, but if you asked a bunch of people about ABA you’d get about as many perspectives on it anyway. It’s a rich topic, and I think they cover the important highlights well, especially given how there are numerous, giant volumes written on the subject.

In places, Look At My Eyes may feel like it assumes certain abilities that your child may or may not have achieved yet. For example, I felt like it presupposed a level of receptive language (the ability of a child to process and respond to what you are telling them, particularly with respect to things like requests and instructions) that is noticeably higher than our son has right now. You could make a case that the book overall tilts somewhat toward the higher functioning end of the spectrum. I honestly don’t think that at all lessens the usefulness of the book, though. I mention it primarily because emotions in the early days of a diagnosis are very raw, and discussions about things another autistic child can do that yours cannot can feel isolating. This is going to happen to pretty much everyone at some point, but I think it’s an emotion worth naming so you can be aware of it when it comes up.

For those parents in the earliest stages of a diagnosis, I would recommend reading this book a section at a time. Fowler doesn’t linger on a topic for long, preferring – rightly in my opinion – to get to the point and get on with it. However, the result when you’re already overwhelmed may feel like being on the end of an information fire hose. That’s a normal feeling. Move through it steadily a piece at a time, take notes, and you will learn a lot.

Look At My Eyes has an ambitious goal and hits the mark well. Melanie and Seth Fowler bring together a wealth of practical advice, the understanding of parents who’ve been there, and wisdom on how to make sense of the emotional chaos of the early days of an autism diagnosis. If that’s where you are right now, or if you know parents in that situation or who are concerned their child may have autism, Look At My Eyes is a book you should get.

You can order a copy from their website at http://lookatmyeyes.com or at online booksellers such as Amazon and Barnes & Noble.

[Disclosures: I received a free copy of Look At My Eyes for review.]

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First Day in Kindergarten

First Day in Kindergarten

First Day in Kindergarten

First Day in Kindergarten

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