Never say never.

Before you have a child diagnosed with a serious disability, you remain in de river "Nile" for as long as you can. No matter how many times you read the words "LIFELONG disorder of communication, learning, and behavior", you just KNOW you are the mom and yours is the child who will beat this thing. No matter how many times you read other parents stories of how they thought the same thing and it didn't happen. It is amazing how we all think we are exceptions.

When Tommy was 3, we went on a wonderful family vacation to an island in Florida....we took the dog, we swam, we ate, we played, he jumped on the bed. We went canoeing in a state park and saw an older lady with a middle-aged man in her boat....he was leaning down staring at the water out of the corner of his eye, and I said to Mark, "Look, her son has autism"....a few hours later, it happened that we were all in the parking lot at the same time, and as Mark and I often do when we see an older parent with an autistic child, we asked advice. We asked, "Is there any particular message you could give us?"

This very nice lady looked at us and said, "If you can prepare yourself for absolutely anything....just anything...then you will be ok....there will be many unexpected events on this journey, and some won't be easy....you need to be ready, and you need to be flexible."

We rode away thinking how lucky we were that our son was so mild that we would NEVER have to feel this serious about his condition. Because we were working so hard and giving him such a wonderful early intervention that it was just going to go away! Poor lady...what a struggle, we thought.

As we have met more and more parents and seen more and more kids with autism, it now is clear that we all go through the same thing, with this damned diagnosis. At the Marcus Institute I saw an adolescent girl arrive daily in arm casts and a helmet so that she wouldn't do self-injury. I saw a girl at Cobblestone Therapy weekly who constantly had a bleeding scab on her nose. I saw a 10-year-old boy going into MacDonald's who bit his arm repeatedly before going in, to the distress of his tired dad. And I thought, those POOOOOOOR people...I'm so glad Tommy will never do that.

Tommy lately bites his right arm when he's frustrated...and sometimes he bites it when he's happy....the school has a fabulous behavioral therapist consulting them and us on how to deal with it. The other night he bit his wrist and for the first time, it bled....I called for Mark and when he saw...well.....we just cried....WHAT ARE WE GOING TO DO???? WE NEED HELP.

Fortunately, here and there in this big city, there are AMAZING behavioral psychologists who have dealt with these very typical autistic behaviors for years (yes, Janet Lund, that would be you)....they are on board, and we have no idea what we would do without them. Because, according to the National Research Council on autism, "Once they become an established part of an autistic child's repertoire, unlike typical children, ASD kids do not outgrow them. Without appropriate interventions, these behaviors persist and worsen." So we are quickly getting him the help he needs and doing the hard work that has to be done to prevent this from becoming part of his "repertoire"....this requires constant supervision and a knowledge of how to do what schools call "positive behavior interventions" and "positive behavior support"....

We know we and the wonderful people working with Tommy will extinguish this behavior too. They always do, and we are so, so incredibly grateful.

Now with some sadness, we never say never. We've eaten far too much crow to do that anymore.

Last week, one of the students at the university I work at found me to ask me about Tommy. Her son had just been diagnosed with autism, at age 3. I gave her the titles of my 3 favorite books on autism, and I said, keep him engaged, as the prescription requires, a minimum of 25 hours per week in positive, happy communication....it won't be easy since he doesn't want to communicate, so go take a class in Floortime. You'll need some ABA, a lot of Floortime, a lot of speech therapy, some OT, a lot of play and connection with each other....just basically, A HECK OF A LOT OF HELP.....

And then I told her, "And you need to ready for absolutely anything....there will be many unexpected events on this journey, some very difficult, many just wonderful. But you will need to be strong....and flexible."

Turns out that pretty white-haired lady knew exactly what she was talking about.