When I attended a writer's conference in Illinois last June, an editor advised me to be personally transparent in my writing. I think I am already transparent on this blog, but there are some things I just can't say here, so you will have to wait for the book :)
I was also advised to get other parents' perspectives and experiences and add them into the book. I have contacted innumerable parents, special-ed teachers, and relatives of children and adults like Kalisha. I had ONE response; despite my assurance of anonymity and the chance to read and approve what I wrote before publication.
My conclusions about this lack of response--right or wrong--are that despite all of the media attention to Autism Disorders and Aspergers Syndrome, most parents are still reluctant to publicly disclose the things their children do, say, or how they act.
I am not breaking new ground with this book, but I can guarantee it will be as honest and truthful as I can make it; including, among other things, my swearing, yelling, and sometimes TOTAL mishandling of a situation. I have asked God to guide me so that the book will be helpful to other parents of children like Kalisha; whose child doesn't fall into any of the 'categories.' I want to title it "Not Different Enough".
This is the explanation for that title. First of all, I'm not asking or wishing that Kalisha any different than who she is, and I do realize that many parents deal with difficulties that are so much more severe than hers. However, there is difficulty in being somewhat different, but in a way that's not always evident to other people. Kalisha came home from school one day when she was in Junior High and told me, "Mom, kids don't know what's wrong with me. They just think I'm weird. I guess I'm not different enough."
That was a very deep and prophetic statement...When she was raped and the man was questioned by the police, he said, "I didn't know there was a disability." Great defense, huh?
The other difficulty I'm having is the time lapse. When young parents read parts of the book concerning events from 1984 to 1990, they might wonder why I didn't use Google or the internet. It is beyond their comprehension that when Kalisha was born, we didn't even own a computer and neither did anyone I knew. I sort of just flew by the seat of my pants, and unfortunately in some cases, I believed what the 'professionals' told me. I was so unbelievably naive.
This book will not be a depressing read; I hope to balance the terrible with the hysterical and the preposterous.
I value the opinions of more experienced writers, and the thoughts of parents with special-needs children. Please comment and let me know what you think! You can comment on this page freely and anonymously if you like--it doesn't lock you into following for the rest of your life or anything like that.
One more thing. Anything I write is always pre-read by Kalisha. I will not post anything she does not want known, but she is as open as I am and always tells me, "Yeah, people should know that. I really want people to know what it's like to be me."
I am so glad you are finally writing the book Mom. I can't wait to read it.
ReplyDeleteGloria,
ReplyDeleteI think it is wonderful that you are embarking on this journey to educate both parents of special needs children and parents in general, despite how painful it must be for you. I think it is important and encouraging for people on the same journey to hear of others dealing with the same things.
I have teenage boys and about a year ago I started doubting myself as a parent, thinking that most other teenage boys were well behaved, obeyed their parents, stayed away from negative influences. I thought that mine were little heathens and that somehow I had missed some important teaching tool to make them nice and well behaved. I started honestly talking and being transparent with parents of teenage sons and discovered that we are all dealing with the same issues, that mine were actually not that bad! It was a comfort to know that other parents were going through the same thing, the same frustrations, the same shame, the same guilt.
My reason for telling you this is that by you relating what you are going through, by honestly revealing some things, you are going to be encouraging other parents that there is hope, that they aren't alone, and that there is no shame or guilt in their past actions in dealing with their child. You are going to open the eyes of others with the challenges, frustrations, and the joy that comes with being a parent. You will educate those of us that don't understand what parents with special needs children go through on a day to day basis.
I love your ideas, keeping it real and transparent. Maybe instead of actually going back to when she was younger, just incorporate some of her 'younger' stories into your book as you go along. I wish you success as you embark on this journey! -Karen
I think Kalisha just gave you the title for another book: "What It's Like to be Me."
ReplyDeleteThis is great Gloria. Don't forget the condom/condominium story.
ReplyDeleteIt still makes me smile after all these years. One of my favorites.
DeleteSorry i missed your invitation to participate. i would like to do so. Thank you for launching the project. --Valerie wondersandmarvels-wonderfull.blogspot.com
ReplyDeleteValerie, Please feel free to send me some stories or anecdotes or anything. My e-mail is: doty7843@yahoo.com
DeleteMy very best wishes to you in this awsome undertaking! I know you must have many stories to tell. I also know that many parents, kids, educators,will be helped by your 'truth.'
ReplyDeleteBless your heart and blessings on the journey! I can't wait to read it...God's speed!
Thank you, Gayle. It is so good to have encouragement from friends.
DeleteGloria,
ReplyDeleteI am a friend of Kari's, and a fellow adoptive parent, of not one, but 2 special needs children. They look beautiful, bright, and normal. And they are beautiful, bright, and normal--- sometimes. But most of the time, one is so emotionally damaged and fragile that the slightest bump in our family can send her spinning out of control. There have been times that I thought our whole family would implode. We have 2 biological teenage sons who have questioned us, wondered why we adopted in the first place, and how to get back a sense of normalcy. The hardest part is that "outside" people think we are "saints" because we adopted these 2 precious girls. They see the beautiful, blue eyed, endearing children they are, but they never see the behind doors terror that they can be. I am sure you have had people that think you are such a wonderful mom who is so good with Kalisha, but then you get home and want to just crumble. The lack of "getting it" is the hardest thing. The stress on my marriage and my other relationships is harder than anything else we deal with. The isolation and feelings of utter inadequacy can be overwhelming. I thought I had this parenting thing down pretty well... our older two aren't angels, but they are on a good path. It seemed like we knew what we were doing. The girls rocked all of those feelings. Both of our girls have fetal alcohol damage. It manifests itself in different ways for them. The older has all sorts of emotional issues as a result of neglect, but also as a result of frontal lobe brain damage. The younger has little impulse control, but she has really blossomed and seemed to be on a good path... only to recently discover that she has severe vision issues that I was totally unaware of. And I have an early childhood special education background and a masters degree in child development! I totally missed that my child sees everything double as a result of prenatal abuse. She now has glasses and is totally amazed at her ability to see clearly. I am so happy that she can see, yet I feel so guilty that I never realized she couldn't. I often wonder if either of our girls are going to be able to function independently as adults. As a former teacher and now a parent of special needs children, I would tell parents that they MUST focus on their marriage above all things. Secondly, I would tell them that they have to remember the good moments and days and roll past the bad ones. I would tell them to make sure those precious darlings that are driving them crazy know that their mom loves them. I would tell others to never assume you have the whole picture. I would tell them to give their friends with special needs children a break... sometimes it is more stressful to send those kids with someone else (the fallout can be huge). However, a frozen meal for those really hard days can be an incredible gift. A gift certificate for something the mom loves can be a life saver. I have a friend who gave me a $40 Starbuck's gift certificate for my birthday last year during a particularly difficult time with our oldest daughter. It was the most thoughtful gift I have ever received. For one, no one else got to use it except me. For another, we don't have the extra funds for me to just pop into Starbuck's eventhough I love it. There were many times that I was able to sneak away for a few minutes and drive through a Starbuck's. Or grab a cup as I walked through Kroger. It was those times that I felt like a normal person for a few minutes. I don't know if this is helpful for you, but that would be my two cents. I am sure I will think of other things. Blessings and good luck to you. From Lara
Lara, I wish I lived closer to you, so we could go to Starbucks and chat.You touched my heart on so many levels and there are so many things I want to say to you and share with you. The first thing is about the guilt over the glasses...my first-born is a boy and very typical. He will soon be fifty years old, but when he was in first grade, they did a vision screening of all students. They recommended he see an optometrist, so we took him. he got his glasses and on the ride home, he said, in wonderment, "Wow, I didn't know the trees had little leaves on them. I thought they were just green globs." Talk about guilt!
DeleteWhen Kalisha was in preschool, she slipped on the ice on the way to the bus. I stood her on her feet and away she went. About 11:30, the principal called and said she was having trouble carrying her lunch tray. She had broken her arm in 2 places, but being the wonderful mother that I am, I sent her to school.
Keep on, keeping on. Some things get better and some just turn into new 'things' but God haseverything under control. Believe me there were times and still are times when I had trouble believing that and I was pretty sure that the next person who told me that was going to be slapped!
I'm sure we will talk again. You are doing the right thing and my biggest piece of advice is this: Choose your battles wisely because you can't fight ALL of them. God's blessings. Gloria