Today is World Autism Awareness Day, created five years ago by the group Autism Speaks as a locus for fund-raising and spreading the word. It comes at the start to National Autism Awareness Month, which was created by Congress back in the 1970s. In commemoration of both, Huffpost Parents is looking at autism through the eyes of parents this week. Each day we will run an essay about a next stage of parenting a child with autism, starting with the moment of diagnosis, and going through school years, and teens, and entry into the adult world.
Twelve years ago, I was told by a doctor that my son Danny was on the autistic spectrum and I had no idea what to do. I was deluged by suggestions from well-meaning friends, family and co-workers, but many of them were useless. "Take time for yourself. Get a manicure," was the lamest, since I have always bitten my nails and of course began biting them even more then. Others were baffling ("Get Danny sacral cranial massages") and scary ("You have to get him into so-and-so's speech therapy clinic, they're the best, but there is a 30-year waiting list"). However, in spite of all the advice, it took me years to figure out what I really needed to know. So here, for parents of the recently diagnosed, I offer a short list of what I wish I had known then:
1. Ask your doctor for some Valium. Not for your kid. For you. Odds are you will need it to sleep. Or to stay calm while you're awake. Of course you may not need it, but it will probably help just to know you have it.
2. If you are the parent taking on the task of managing the child's care (in the vast majority of cases, the mother), make sure you get paid. That's right: No matter how tight money is, you and your spouse should pay you a caregiver's salary, even if it's minimum wage. Pay it on the books, so you get Social Security and unemployment insurance. Believe me, it will come in handy if you are in the approximately 80 percent of parents of autistic children who get divorced. And, if you are one of the 20 percent, you'll have some money put away for a rainy day.
3. Make sure any real estate or stocks you own have your name on them. (See above.)
4. Join a support group or befriend other moms you meet in the waiting rooms of your children's therapists. You will need people you can talk to and it will be hard for you to relate to your friends and family -- at least for the foreseeable future.
5. When you do deal with your friends and family, make sure you memorize a couple of general-interest talking points, so you can occasionally discuss something other than your child's autism. Sample topics: "Do they say it's going to snow?", "How about those Knicks?" and "Did you hear the latest statistics about the job market?" You really need your friends and family now more than ever and they do care about your child, but you have to remember, they still have lives that do not revolve around autism.
6. Practice saying the phrase, "How are you?" (See # 5)
7. If you have other children, find some way to give them your undivided attention, even if you have to hire a babysitter for your autistic child or let him zone out with a video.
8. Practice deep breathing and meditation. Although this may sound like a waste of time, it will come in handy when you need to keep your blood pressure from going through the roof and to stop yourself from committing homicide when other parents complain about how hard it is to get little Zach into a good preschool these days.
9. Two words: Common sense. You will meet all manner of quacks, charlatans and idiots on your journey through the world of autism therapy. You will meet many people who will tell you, "I can cure your child." Remember, be skeptical. There are dozens of therapies and treatments for autism, and that's because most of them don't work that well most of the time. Think about it: How many treatments are there for appendicitis? One -- appendectomy -- because it works. Autism is perhaps the most difficult-to-treat condition in the world. Ask lots of questions of anyone who wants to do anything to and for your child. If the practitioner can't answer you, move on. You have a right to get clear answers. Keep in mind that charm does necessarily coincide with a talent for therapy.
10. Know that while there will be ups and downs -- and I pray, for your sake, mostly ups -- your life will never be harder than it is right now. Which is another way of saying that it does get easier and better.
Anything I missed that you would like to add?
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