Sunday, April 26, 2009

#7 How Did You Cope?

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.

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.

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.