How did you cope with the diagnosis in the early days? Was it easy for you to accept or did you enter a state of denial? What did you do (if anything) to take care of yourself during that time?
For those of you who don't have a diagnosis yet but pretty much know your child is on the spectrum, how do you cope with being in limbo? What positive things help you? What definitely does not help?
I was surprised how readily I accepted the diagnosis--once I knew what PDD-NOS was. We knew something was different about Jack anyway, but all I knew about autism came from the movie Rain Man and a few news shows on savants. It took some research and reading to get to a general level of understanding, and that process didn't take very long at all. I did very little crying, I think because I'm generally an optimist and felt like it would all turn out well in the end.
What took longer was orienting myself to all the details...figuring out how I felt about various therapies, figuring out what therapies we were and were not willing to try, and trying to get a feel for Jack's particular progress. All that took time, attention, and the helpful advice of a good developmental pediatrician. I also had some wonderful friends who listened and supported me. One, a special education coordinator in a neighboring school district, was particularly helpful when it came to navigating the school's red tape and understanding the educational implications of autism for Jack's future.
As for taking care of myself, I made sure I did my hobby (papercrafting) at least several times a week. We had a good babysitter, and I made use of her during the day when my husband was at work or out of town on business. Those breaks kept me sane and prevented me from losing myself completely in this new world of the autism community. Whenever I felt myself getting obsessed with autism, I would go on a news black-out...quit reading all the books, quit surfing websites, quit talking so much about it. After a while, I'd jump back in feeling eager to start reading again.
Sunday, April 26, 2009
Thursday, April 9, 2009
Autism Awareness Month
April is Autism Awareness Month. In Colorado on vacation, I saw a sign in the window of a wine shop promoting Montrose's inaugural Autism Walk. Pretty cool.
For those who find this blog and don't know much about autism, please visit Autism Speaks for good information on its signs, symptoms, and treatment. Also, read the comments on this blog. You'll learn a lot from the stories parents have shared here about the challenges and frustrations they endure every day.
The next time you see a child melting down in public, don't assume it's the result of bad parenting. The child may well be autistic. That parent needs your support and positive thoughts, not a judgmental frown or caustic comment.
The next time you see a child sitting at the playground running sand between his fingers for 30 minutes, don't assume he's being ignored by his parent. He probably needs a break, and the parent is giving it to him.
The next time you invite your child's classmates to a birthday party, remember that the kid in the class with autism might want to come, too.
The next time friends tell you that their son or daughter has autism, don't say, "I don't see anything wrong!" Instead, ask questions. Learn something new. Don't judge.
The next time you see a child with autism, say hello and smile, and don't feel hurt or insulted when he or she ignores you. Just keep smiling. The child notices, even if you don't think so.
The next time you meet a child with autism, don't assume he or she is just like your neighbor's child with autism. All people with autism are unique...just like all people without autism are unique.
For those who find this blog and don't know much about autism, please visit Autism Speaks for good information on its signs, symptoms, and treatment. Also, read the comments on this blog. You'll learn a lot from the stories parents have shared here about the challenges and frustrations they endure every day.
The next time you see a child melting down in public, don't assume it's the result of bad parenting. The child may well be autistic. That parent needs your support and positive thoughts, not a judgmental frown or caustic comment.
The next time you see a child sitting at the playground running sand between his fingers for 30 minutes, don't assume he's being ignored by his parent. He probably needs a break, and the parent is giving it to him.
The next time you invite your child's classmates to a birthday party, remember that the kid in the class with autism might want to come, too.
The next time friends tell you that their son or daughter has autism, don't say, "I don't see anything wrong!" Instead, ask questions. Learn something new. Don't judge.
The next time you see a child with autism, say hello and smile, and don't feel hurt or insulted when he or she ignores you. Just keep smiling. The child notices, even if you don't think so.
The next time you meet a child with autism, don't assume he or she is just like your neighbor's child with autism. All people with autism are unique...just like all people without autism are unique.
Wednesday, April 1, 2009
#6 Do you tell people about your child's diagnosis?
Please share your thoughts and feelings about telling versus not telling. Whom do you tell...everyone you meet or only very close friends and family? The swim coach and the Sunday school teacher? The person who's staring at your daughter or son at the grocery store? Obviously, the severity of your child's symptoms will weigh heavily in this decision, but what other factors influence your decision to tell or not tell particular people?
HERE is an essay I wrote about our approach to this subject.
HERE is an essay I wrote about our approach to this subject.
Tuesday, March 24, 2009
#5 What are your favorite books on autism?
My two favorites:
1. Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life. Lynn Kern Koegel and Claire LaZebnik. This book combines an expert's recommendations and a mother's comments to make a very readable, smart book.
2. Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals. Bryna Siegel. Dr. Siegel's approach to education recognizes that each child with autism has unique strengths and deficits, and she offers strategies for using the strengths to minimize or work around the weaknesses. Practical, useful, and packed with information, Helping Children with Autism Learn is invaluable to parents and teachers of children on the spectrum.
Another book that isn't really about autism but is on my list of top five nonfiction books EVER is Temple Grandin's Animals in Translation. I couldn't put this book down and plan on rereading it soon. Grandin has autism, which she feels gives her a unique insight into animal behavior. A blurb on the back cover, from Nature, says, "At times, it is difficult to work out whether this is a book about animal behaviour with insight from autism, or a book about autism that uses animal behavior to explain what it is like to be autistic. A major achievement of the book is that it is both." I totally agree.
1. Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life. Lynn Kern Koegel and Claire LaZebnik. This book combines an expert's recommendations and a mother's comments to make a very readable, smart book.
2. Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals. Bryna Siegel. Dr. Siegel's approach to education recognizes that each child with autism has unique strengths and deficits, and she offers strategies for using the strengths to minimize or work around the weaknesses. Practical, useful, and packed with information, Helping Children with Autism Learn is invaluable to parents and teachers of children on the spectrum.
Another book that isn't really about autism but is on my list of top five nonfiction books EVER is Temple Grandin's Animals in Translation. I couldn't put this book down and plan on rereading it soon. Grandin has autism, which she feels gives her a unique insight into animal behavior. A blurb on the back cover, from Nature, says, "At times, it is difficult to work out whether this is a book about animal behaviour with insight from autism, or a book about autism that uses animal behavior to explain what it is like to be autistic. A major achievement of the book is that it is both." I totally agree.
Thursday, March 19, 2009
Need a Laugh or Some Hope?
My post on Questioning my Intelligence this week is about Jack and demonstrates his progress in speech. If you want a laugh (or some hope that speech therapy can work!), check it out HERE.
The examples I give of Jack's speech right now show several typical characteristics of speech development in autistic children: repetition, use of scripted language from tv/movies/parents for effective and appropriate communication, and the awkwardness of the emergence of spontaneous speech. Note how Jack's grammar is perfect when he works from a good script, but it breaks down when he's speaking spontaneously or writing his own scripts. He also demonstrates poor receptive language (understanding what is said to him), very literal understanding of language, and non sequiturs.
Although I don't give examples in this post, he has difficulty answering questions and will often ignore me if I press him to answer something that he either doesn't understand or doesn't care to talk about. He also uses scripted language (from his favorite movies) as a form of self-stimulation. He is learning to control his verbal stimming and limit it to "private time" rather than, say, as he is walking into school, but movie lines burst out at odd moments, particularly when he is transitioning or feeling stressed or bored.
Jack receives an hour of speech therapy a week (30 minutes at school, and 30 minutes privately). His improvement in the last three years is amazing, but he still has a long way to go.
Feel free to share your own experiences with language development in the comments!
The examples I give of Jack's speech right now show several typical characteristics of speech development in autistic children: repetition, use of scripted language from tv/movies/parents for effective and appropriate communication, and the awkwardness of the emergence of spontaneous speech. Note how Jack's grammar is perfect when he works from a good script, but it breaks down when he's speaking spontaneously or writing his own scripts. He also demonstrates poor receptive language (understanding what is said to him), very literal understanding of language, and non sequiturs.
Although I don't give examples in this post, he has difficulty answering questions and will often ignore me if I press him to answer something that he either doesn't understand or doesn't care to talk about. He also uses scripted language (from his favorite movies) as a form of self-stimulation. He is learning to control his verbal stimming and limit it to "private time" rather than, say, as he is walking into school, but movie lines burst out at odd moments, particularly when he is transitioning or feeling stressed or bored.
Jack receives an hour of speech therapy a week (30 minutes at school, and 30 minutes privately). His improvement in the last three years is amazing, but he still has a long way to go.
Feel free to share your own experiences with language development in the comments!
Wednesday, March 18, 2009
#4 Who helped you the most in the beginning?
Before I get to the question, I want to thank all of you who have responded either in the comments or by email so far! Each comment has meant so much, and I welcome any and all who read this blog to put in their two cents whenever you have something to say. (tinamarie, please send me an email from my profile page with your email address...I think that will give me your email address in return.)
Now, to the question. For me, the two who helped the most concretely early on were definitely the developmental pediatrician and the child psychologist who evaluated Jack. We only saw the psychologist once, but she gave me the most useful, specific piece of advice we got from anyone...to get Jack into as many structured social situations with typical children as possible and not to do ABA with him. (Note: she was an ABA-trained psychologist.) She recognized his strengths right away, and gave us a direction for using them to tackle the weaknesses. The developmental pediatrician was so responsive, answered all our questions from the MD perspective thoroughly, and helped navigate the military medical system for Jack's best interests.
For moral support and encouragement, our family and friends were such a blessing. A couple of them went into denial ("There's nothing wrong with him!"--they eventually came around), but most were hugely supportive, listened to me talk my way to understanding it all myself as I explained "things" to them, and gave me and George and Jack the love and support we needed. Many asked questions, which told me how hard they, too, were trying to understand what was happening. The preschool director at our church, Kim, placed Jack into a typical preschool class with a PhD in psychology as his teacher. She was one of many angels who smoothed our way to setting Jack up in his treatment plan.
I remember reading horror stories of families falling apart or becoming estranged over autism, and of discrimination and lawsuits, and was terrified we would experience something like that. Praise God we didn't, but my heart goes out to those who were not as fortunate as we were. The beginning of this journey is so scary and so overwhelming, and I will be eternally grateful that there were so many people who said or did the right thing at the right time, or who just listened and responded with love. As cheesy as it may sound, they are a big part of the reason I want to write a book that pays their compassion and love forward.
So, who helped you the most in the beginning?
Now, to the question. For me, the two who helped the most concretely early on were definitely the developmental pediatrician and the child psychologist who evaluated Jack. We only saw the psychologist once, but she gave me the most useful, specific piece of advice we got from anyone...to get Jack into as many structured social situations with typical children as possible and not to do ABA with him. (Note: she was an ABA-trained psychologist.) She recognized his strengths right away, and gave us a direction for using them to tackle the weaknesses. The developmental pediatrician was so responsive, answered all our questions from the MD perspective thoroughly, and helped navigate the military medical system for Jack's best interests.
For moral support and encouragement, our family and friends were such a blessing. A couple of them went into denial ("There's nothing wrong with him!"--they eventually came around), but most were hugely supportive, listened to me talk my way to understanding it all myself as I explained "things" to them, and gave me and George and Jack the love and support we needed. Many asked questions, which told me how hard they, too, were trying to understand what was happening. The preschool director at our church, Kim, placed Jack into a typical preschool class with a PhD in psychology as his teacher. She was one of many angels who smoothed our way to setting Jack up in his treatment plan.
I remember reading horror stories of families falling apart or becoming estranged over autism, and of discrimination and lawsuits, and was terrified we would experience something like that. Praise God we didn't, but my heart goes out to those who were not as fortunate as we were. The beginning of this journey is so scary and so overwhelming, and I will be eternally grateful that there were so many people who said or did the right thing at the right time, or who just listened and responded with love. As cheesy as it may sound, they are a big part of the reason I want to write a book that pays their compassion and love forward.
So, who helped you the most in the beginning?
Thursday, March 12, 2009
#3 What surprised you the most about autism in the beginning?
How did you overcome/deal with your surprise?
For me, the biggest surprise was the lack of a protocol for treatment. When I was dx'd with gastric ulcers, the doctor had a specific protocol to treat them. Ditto with my gall bladder. But for autism, a brain disorder, there was no protocol. I now completely understand why there isn't a protocol in place. Every child with autism is so different that no one therapy or protocol will help all children. Also, some things that we do now as "therapy" for Jack are really normal kid things, like gymnastics and school. I felt like we should be doing something more... I don't know... unusual!
It was left entirely up to me and George to decide what to do, and much of what I read left me more confused than before. The developmental pediatrician and child psychologist gave good guidance, but in those early days, I was really too ignorant to understand much of what they said or why they said it. The big picture did come together as we started doing "stuff," but I felt really lost and directionless at first--a very unhappy feeling.
Appendix C of The Autism Sourcebook helped a bit because it lists all treatments alphabetically and says what aspect of autism each treatment addresses. (The rest of that book totally freaked me out, though!) In retrospect, I really wish I'd read Overcoming Autism then. That book would have been a huge help, and it's my number one recommendation for anyone who's just starting this journey or feeling lost on it. Huge thanks to Karen D. for sharing that one with me!
For me, the biggest surprise was the lack of a protocol for treatment. When I was dx'd with gastric ulcers, the doctor had a specific protocol to treat them. Ditto with my gall bladder. But for autism, a brain disorder, there was no protocol. I now completely understand why there isn't a protocol in place. Every child with autism is so different that no one therapy or protocol will help all children. Also, some things that we do now as "therapy" for Jack are really normal kid things, like gymnastics and school. I felt like we should be doing something more... I don't know... unusual!
It was left entirely up to me and George to decide what to do, and much of what I read left me more confused than before. The developmental pediatrician and child psychologist gave good guidance, but in those early days, I was really too ignorant to understand much of what they said or why they said it. The big picture did come together as we started doing "stuff," but I felt really lost and directionless at first--a very unhappy feeling.
Appendix C of The Autism Sourcebook helped a bit because it lists all treatments alphabetically and says what aspect of autism each treatment addresses. (The rest of that book totally freaked me out, though!) In retrospect, I really wish I'd read Overcoming Autism then. That book would have been a huge help, and it's my number one recommendation for anyone who's just starting this journey or feeling lost on it. Huge thanks to Karen D. for sharing that one with me!
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