A Mind of My Own
Posted by Gail | Filed under Autism
Chapter Eleven: It’s All Greek To Me
I have always been puzzled by the things people say. Some of the things they say don’t make any sense. And sometimes the things I say don’t make sense to them. I know what I want to say, but the words don’t come out in a way that makes it easy for other people to understand. When they say, “What do you mean?” I usually just give up and say, “never mind.” My mom never gives up. She bugs me and bugs me and bugs me until I try to tell her what I mean. Then she tells me what she thinks I mean. Sometimes she’s got it right and I tell her. Then she looks very happy. Other times, I just can’t explain it so she keeps guessing. I wish she’d stop. So then I get mad and she backs off.
Chapter Twelve: I Just Don’t Understand (Part 1)
Chapter Twelve — I Just Don’t Understand
When I took Malcolm for his diagnosis, I was in a panic. After watching him at pre-school for two days, and then getting on the internet and researching what I’d seen and what his pre-school teacher had spoken about, I was convinced Malcolm was autistic. I called my GP at home one morning.
“Rob,” I said. “Malcolm is autistic. We’ve got to get him tested.”
“Don’t be silly Gail,” he said reassuringly. “Malcolm isn’t autistic.”
“Yes he is,” I said in tears. “I’ve seen it and we have to do something.”
Four weeks later a developmental psychologist, Mary, contacted me and appointments were set up for Malcolm. Both Mary and her partner in crime, Nolene, the language pathologist, subsequently told me I had a great friend in Dr. Rob who had worked wonders getting me into the system so quickly. I loved Dr. Rob because no matter what I said, he always believed me. And I came to love these two women (I called them “The Girls”) because they helped me understand my son.
Throughout the testing and during the reporting, a lot of psychological words were used, many of which went right over my very intelligent head. I was afraid, almost in tears, most of the time. I was desperate for information I could understand. “Give me a book,” I appealed. But there was practically nothing available at the time. And the more information I got, the more sure I was that I wasn’t a match for what was to come. I was wrong.
September 7, 2012 at 7:29 am
You certainly were a match for what was to come. Malcolm will have a good future because of you. Because of your writing autism will have a voice.
September 7, 2012 at 8:03 am
After watching my closest friends struggle with their autistic son, I am so glad you are championing autisim awareness. These children and families (and those of us who love them) need a passionate voice to continue raising awareness and who will fight for getting them the help they need.
Since I don’t have children of my own, let alone an autistic child, I often wonder how I can support my friends in this challenge. Your blogs have been really insightful and have enabled me to have a better understanding of what their child is going through and what they face as parents. I don’t want to be the kind of friend who stands on the sidelines with a ‘there, there” attitude.
September 7, 2012 at 8:41 am
Gail, I know there wasn’t a book available for you when you first started out, but I just finished reading an amazing book (fiction) written from the POV of an autistic man. It’s set some years in the future and really informed my pre-conceptions of what autism is and means to those who developed this way. It’s called “The Speed of Dark” by Elizabeth Moon. I really recommend it to anyone looking for a deeper understanding of the inner life of an autistic person.
September 7, 2012 at 2:37 pm
It had to start somewhere!!! Your doing an excellent job!!!! You need to put this out there for parents and TEACHERS!!!
September 7, 2012 at 3:13 pm
Yes, Gail. I agree with tammy. There are few resources for individuals who have challenges and fewer advocates who really understand. I know nothing about the publishing industry so this comment may be unreasonable or naive but but IMHO, this weekly blog should, at least, become an e-book.
September 9, 2012 at 9:25 pm
Thanks again for this ongoing series. I’m learning so much!
September 9, 2012 at 9:47 pm
Google Temple Grandin. She’s an autistic marvel.
September 10, 2012 at 3:19 pm
Living with a child who has autism is so very hard.
Part of it is because the experts often do not agree with how you should handle their needs. You feel clueless and ill equipped all the time.
Part of it is because everybody has an opinion and “friendly advices” on how you could raise your child. It seems that everybody keeps telling me that I should try this and that. Even perfect strangers stop me in a store to tell me about an article that they read, a treatment I should try and how knowledgeable they are about autism.
I am sometimes soooo mad at all these “hollier than thou” who think they can raise my son better that me.
It’s not that I don’t appreciate real help and concern. It’s just that people are downright imbeciles sometimes.
I am eternally grateful to my wonderful husband, my parents and my sister who are always there for us. They are there with their time, love and patience and it makes all the difference.
We also received a specially trained dog from the Mira Foundation (in Quebec) who really made a tremendous difference in our lives. She’s with us since 4 months and I don’t know how we would manage without her.
So if you want to help parents with special needs kid, try just listening to them, to their daily frustrations. If you work with them, understand that if they sometimes call sick or seems distracted, they may have a hell of a good excuse. Don’t always talk to them about gluten-free diet, miracle treatments or homeopathic pills. Just open your arms, your heart and your mind and be there for them.
September 13, 2012 at 10:59 am
@CarolineB: Your heartfelt ‘advice’to, “Just open your arms, your heart and your mind and be there for them” says it all. Thank you.