tag:blogger.com,1999:blog-5441989712918579133.post8520420958628625766..comments2024-01-26T03:49:33.080-05:00Comments on Rarer in Girls...My Daughter with Autism: The books I can't writeSuzannehttp://www.blogger.com/profile/08240262747073351481noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-5441989712918579133.post-88764211984212828972013-09-27T08:18:28.938-04:002013-09-27T08:18:28.938-04:00Thank you to all of you. Lori, you made me cry wi...Thank you to all of you. Lori, you made me cry with that. I think this IS my book. You are right, Pam, autism isn't a book really. It's something we live through. It doesn't fit well into the pages of book, because it's so individual and so hard to capture. In a way, the beauty and the joy are the hardest parts to capture accurately, because it's so easy to for those who don't get it to not understand how fleeting those moments are, and how they are not the triumphant happy endings, but instead part of the whole picture---the part that keeps us going, but still, not the breakthroughs that make books sell. Natalie, you make me want to try to write the book! I don't think I've either read a book about LFA in girls. I wish I had.<br /><br />David, I love your book ideas! I've thought so often about how one of the toughest parts with Janey is that she makes all parenting books useless. I am the type that doesn't want that. I don't pride myself on having a unique child necessarily! I would like a child doing things that other kids have done before, so I can look up and see the right way to deal with what she does. The shower example is just like Janey. She doesn't react as other kids react. What would be punishment or at least a deterrent for them is not for her, and the same with rewards. I have started taking the melatonin I got to try with Janey myself every night. I feel for the 3 years without screaming at night. I think a lot of people don't quite believe how awful the sleep piece is. It's funny, as my doctor recently also wanted me to have a sleep study. Ha. I know exactly why I'm tired so much, or at least what a huge piece of it is. When you have child waking you up all night, you are tired. And I feel for you with a younger child too!<br /><br />You guys are what keep me going. Thanks more than I can say.Suzannehttps://www.blogger.com/profile/08240262747073351481noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-81110200620853159682013-09-26T22:42:52.507-04:002013-09-26T22:42:52.507-04:00Suzanne,
Your book is the book that needs to be ...Suzanne, <br /><br />Your book is the book that needs to be written, because you will give the realities of coping with LFA a competent, readable voice. Sure, that has been done before, but not in the honest, windowed what you write your blogs, and moreover, now about LFA in girls (Or if it has, I have note yet found such a book).<br /><br />Only you can decide if chronicling your life with Janey in a book is for you, but should you decide to do it, I predict with confidence that it will become much-talked about, and even if not, I sure want to read it.Nataliehttps://www.blogger.com/profile/16287826991344473460noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-69796178142872460982013-09-26T21:03:19.333-04:002013-09-26T21:03:19.333-04:00How about "My kid made all the other child re...How about "My kid made all the other child rearing books worthless"?<br /><br />It took me a while to realize my daughter's life experience isn't going to track with what passes for normality. I once googled the phrase "my kid cries when someone coughs". Never found anyone on the planet within reach of a computer who had the same problem. During one phase she kept taking off her diaper and putting on pants inside out to hide what she did. The treatment was supposed to be having her get a quick cold water shower for a few seconds and I'll never have to do it more than twice. She took those showers tougher than a terrorist getting water-boarded. Never seemed to bother her much. Cure book? I keep thinking about Helen Keller and The Miracle Worker. Anything positive from my daughter comes out like "waa waa" in front of the water pump scene. The daycare teachers figure she can't hear or something but if you ask her to touch a named body part she does it. We get all echolalia from school: "baby daddy", "oh my gosh", "put away the toys", now it's time for a break". . . <br /><br />"How my kids got me hooked on drugs- a role reversal" <br /><br />Never thought I'd pop pills to sleep but I'm hooked on Ambien or "Zombien" until the next day. I have a 1 year-old son that tag teams with my daughter insuring I rarely have a night in 3 years without someone screaming at night. My wife's separation anxiety working the night shift combined with her Filipina Catholic guilt leads her to keep the kids at home when they should be in the daycare. Went to a sleep clinic where everyone apparently gets sleep apnea dx. What a joke! A couple thousand of dollar billed my insurance company to watch me sleep for two nights and then to try to sell me an air pump mask. The unseen doctor never read about home situation on the form I filled out. I've read a lot about parents of autistic kids on antidepressants but I'll pass on joining the Prozac generation for now. Freeyokehttps://www.blogger.com/profile/12526846615176172310noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-28321433841430904732013-09-25T23:24:42.436-04:002013-09-25T23:24:42.436-04:00Suzy,
I would suggest your book was just outlined...Suzy,<br /> I would suggest your book was just outlined...autism isn't a book...it is an experience. Good, bad, revealing, maddening, it is proverbially what it is. The beauty of it is it's individuality...and I use the word beauty loosely, but beauty lies in the way families adapt. We don't ask for it and we have no road map, but we just do what needs to be done. And we learn how to let go of control where we have none and make the most of where we do and celebrate the littlest things. And we just love our kids...there is incredible beauty there. That's the story. And in the meantime we talk and write to others like us around us and that helps. You do a fantastic job with this blog. Thank you for helping others see they a not alone..!!!Pamhttps://www.blogger.com/profile/04629205545130581060noreply@blogger.comtag:blogger.com,1999:blog-5441989712918579133.post-87746914603492910432013-09-25T22:13:27.549-04:002013-09-25T22:13:27.549-04:00You help me get through the day Suzanne. Or night ...You help me get through the day Suzanne. Or night to be more accurate. I think you are already writing your book. And it's beautiful and at times heartbreaking and full of humanity and honesty and joy and survival. Real survival that makes others feel less alone as they navigate their own 'trips to Holland.' Thank you. LoriSimone Blanchardhttps://www.blogger.com/profile/02857302772864283651noreply@blogger.com