I remember when my son, who is now almost 18, was diagnosed with an autism spectrum disorder. The neurologist told me he had Pervasive Developmental Disorder-Not Otherwise Specified. It was like one of those moments in a movie - the person receiving news is suddenly unable to hear anything but a very loud heart pumping.
When I arrived home, I called my parents. My dad, who spent his career as a pediatric social worker, told me something I have told others over the years."Peter is the same little boy he was this morning. Now he just has a diagnosis. A diagnosis can give you direction for how best to help him."
Wow, that gave me my breath back. Peter was still the same little boy. The one who clapped his hands over his ears and often looked overwhelmed by the world around him. The one with three huge dimples that flashed as he smiled. Now I could begin to make his life more comfortable and manageable and see those dimples even more.
12 More Things to Know
1. Learning never stops. When I first began exploring autism spectrum disorders, there was a great deal of emphasis on the first five years and the plasticity of the brain. It made me feel like I had to cram in all of Peter's therapies and learning before his brain's plasticity was gone. Now, long past five years old, Peter continues to change and grow.
2. Other parents are an amazing resource. I am fortunate to have a wonderful group of parents willing to talk with me as I explore each stage of Peter's life with him. Some have children who have already gone through school. Some have children with sensory issues like Peter. Comparing stories gives me a new way to look at things.
3. Break things into more manageable learning pieces. When Peter was three, he was afraid of the water sprinkler. Both of my daughters would run in and out of it and he would walk around the perimeter looking nervous. I realized that the water was too high. We lowered it to his ankles and Peter got wet. As the summer went on, we kept raising the water level a bit. By the end of the summer, Peter was getting his face wet like his sisters. Whenever I find a challenge is too big for Peter, I try to think of it like the sprinkler, one step at a time.
4. Your child needs extra help to build friendships. Navigating social issues is never easy, but those on the spectrum have an even more difficult time. Be willing to help your child take friendships slowly. Create opportunities in an environment that is not overwhelming and start out with short visits or events.
5. Follow your child's lead. Following your child's lead can often lead to longer periods of communication and socialization. When Peter became fascinated by cartoons, I watched with him. Then I gave him the coloring book or story that matched. It helped build on his interest and expand the way he thought about it.
6. Music provides so many positives. Music is processed in a different part of the brain than spoken language. Often, those on the spectrum can process lyrics and sing even when they are not very verbal. Peter slowly went from communicating through songs to speaking on a more regular basis.
7. Routines are not always possible. With three children, I could not always stick to a strict routine. Changing routines made Peter very anxious. I discovered if I could add a sub-routine into the change it helped. For example, if we always picked up his older sister on Tuesday at 5pm and I suddenly needed to pick her up at 6pm, I would make sure Peter was aware of the change as soon as possible. He would also know that because he would be in the car later, he could play with one of his favorite toys in the car (a toy I saved for such special moments). The knowledge that a particular change always had the same result was often enough to calm him down.
8. Spend a moment in their shoes. I found that some meltdowns were preventable if I thought about the sensory challenges and took action. When Peter was little, he would always run in and out of a room when there was a party going on. The noise in the room was too much for him. We told Peter he could have breaks and one of us would walk out of the room with him and find some quiet for a while. The first couple of parties, the intervals were 20-30 minutes."You can have a break after we eat salad." Or "You can take a walk when the music starts again." Then one day it happened, we got through a whole party and Peter did not need a break. He had desensitized himself to the noise. Some parties, especially those with music, he still takes breaks. Feeling like he has some control over his environment is a tremendous help.
9. Pets are possible. Peter was terrified of dogs, so we thought that might not be something our family should take on. My girls did some research and found out the best way to handle this particular fear was to have a pet. Bambi, our rescue silkenese, has been a wonderful gift for the whole family. It took a long time for Peter and Bambi to bond, but now he is one of her protectors. Storms, which used to scare Peter, have now become a time that he comforts Bambi."Remember when storms used to scare me?" he asks."I know how Bambi feels. I don't want her to be alone."
10. Give yourself a break. As parents, we often second guess if we are doing the right thing. I used to do that even more with Peter.
There are so many therapies and so many ways to approach spectrum disorders. Am I doing enough? Should I give Peter more breaks? Should I push Peter harder? Arm yourself with knowledge and follow your instincts. You know your child best.
11. Grow with your child. It is often a challenge to let your child grow up. When it is a child who has special challenges it sometimes becomes even more difficult. Peter has a habit of giving people what they expect. I was at a meeting at school when they talked about how he was taking care of the straw in his juice box by himself. At home, he was still handing it to me. That night, I let him know that I knew he could do it and he took care of his own juice box from then on. It's important not to get stuck in one place and to help our children continue to grow.
12. Celebrate the little things. Some of the"little things" are not little at all. The first time Peter hugged without being coaxed; the first time Peter asked a "why" question; the first time Peter worried about the puppy instead of himself...these are all huge.
Patrice Athanasidy, who lives with her family in Westchester, has written for numerous publications in the tri-state area. She is an adjunct instructor at Manhattan College in the communication department.