I own either in ebook or regular paper form about 15 books on autism. With the exception of 2, (1 of them is preordered and I haven't received it yet) I bought all of them in either December of 2012 or January of 2013. Aaron was diagnosed with autism in December 2012...so as is pretty obvious, I went hog wild with the book purchases pretty quick.
Only 2 of these books have I read all the way through and that is on purpose. I would say I have read on average about 50% of each of them. Frankly, it is depressing to read them, it makes me overanalyze our situation, look back and regret things I cannot change and the majority of the time it's just counter productive and takes up my precious non-autism, no kids free time (because there is no way my kids will let me read books while they are awake)...those books are not going to teach me any more about Aaron than I already know and they certainly aren't going to help me read his mind. So basically I use them for perspective when I start to lose focus on what I need to be doing to help Aaron make progress, when I start to misinterpret his actions as "bad boy stuff" even though I know in my rational mind that he can't help what he is doing, or when he does something new and we aren't sure if it's autism related or not (in those instances though it's easier most of the time to just turn to the internet first). I naturally speed read so I skim through the book I need to the part I need, read it, and then I'm done. They are informative don't get me wrong, autism is complicated and going in to it blindly can drive parents and their child crazy, but I certainly went overboard and bought waaaay to many books. That in itself can drive you crazy as well. There has to be a limit. I think I was so shocked at how ill informed we were about autism I bought everything I saw available instead of just what was recommended by Aaron's doctor. The recommendations would have been sufficient (plus two others)...those are my "go-to" books now, I already knew my child, I just needed to understand what was happening to him and why he was doing what he was doing for such a long time.
In what I consider to be a weird twist of fate, within a week of Aaron's autism diagnosis, one of Aaron's speech therapists found out about an autism conference in Casper, WY 1 day before it was to begin. I had missed the registration deadline but I called and they told me I could come anyway and just pay when I got there, and I could only attend the Sunday part of the conference because my husband works Saturdays and I needed him to babysit kids for me. I knew NOTHING about autism yet and even though I knew I was missing the bulk of the conference and it was a 2 hour drive to Casper I really wanted to go and see what information I could gather. The only things going on that day were 2 separate lectures, one in the morning and one after lunch both given by a woman named Jennifer McIlwee Myers. She has Aspergers.
That was the best thing I ever could have done. No book...other than her book...has given me the kind of information and insight in to the mind and struggles of a person on the autism spectrum than the information she gave that day. She was funny, real, and so informative I draw on things she said every single day (no joke). Almost every single thing she said was true and accurate to Aaron and the way he is and if I had not seen her speak I would have no idea what the hell is going on right now because I haven't read 90% of what she told us about in any book or on any website...not in the way she put it anyway. She spoke in the nice, funny way that is relatable and easy to understand. It made me want to listen and learn and not want to crawl in to a hole and die or be intimidated by the extreme challenges that Aaron will face in his life or my husband and I will face as parents of a child with autism. She was well in to her 30's before she found out she had Aspergers and life was not easy for her even a little bit. She and her parents had to do this all on their own with zero knowledge of what was going on and they are all amazing people for coming through it with their family intact. I follow her on Facebook and she has another book coming out in July (this one is about sensory issues, the first was about teaching life skills to those on the spectrum) that I have already preordered and I am really looking forward to.
Before we knew about Aaron's autism I had to get rid of all the standard parenting books I had (specifically the "What to Expect" series). As helpful as I'm sure they are to some parents, to me they just made me sad, anxious, and angry. They are so focused on milestones that they can make a parent obsessive to the point of making book shaped holes in your drywall. They have little to no information on autism, all they say over and over again is, "your child should be able to do this and if he can't, see the pediatrician." Well thanks a lot. I know the authors don't want to alarm anyone or turn new moms in to hypochondriacs but constantly suggesting I take my child to the doctor isn't any better than maybe a quick suggestion on what problems may be causing developmental delays at these specific ages. If they really are consulting with all these doctors to write these books I don't think it is so ridiculous that an actual doctor could put a line or two in there about what might be going on. I mean, hey, it would make more words in the book, making the book longer and they could charge more...so everyone wins right?
It just seems to me somewhere along the writing process someone might have come along who could have said, "What if a new mom is reading our book and her child has autism? Don't you think after the billionth time of her kid missing a milestone our book might end up in the trash if we don't provide some sort of productive advice or resource other than 'See a doctor' or 'Ask about this at the next checkup.' " There aren't many disorders that I can think of other than autism where a child presents as being completely typical on the exterior (I'm trying to be politically correct and not use the word "normal") but has some major shit going on underneath that isn't detectable by blood tests, etc. They may have changed the books since my 5 year old version but mine said nothing about autism other than a very small amount which clearly wasn't enough to clue me in to anything. And I gotta say, it was glaringly obvious he was autistic if I had known the signs....just sayin.
I'll tell that story later. You think I drone on and on now...just wait....
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