Book Giveaway and Author Interview!

When your child is diagnosed with autism, you are flooded with “must do’s” from a variety of sources. New parents try to learn as fast as they can, even as they are coping with a lot of personal pain. It is hard to keep perspective and make good choices.

I want to tell them not to throw themselves into autism with such abandon that their family loses balance. Yes, you need to learn about the styles of therapy available in order to discover what is a fit for your family. You try things and learn about other various avenues, possible treatments. But you have time. And you can use the help of other parents whose kids have autism. They’ll steer you in good directions. But don’t be afraid to exercise your own common sense. If something sounds wrong for you, it is.

There is a lot of pressure and rhetoric around the importance of early intervention. That “hurry, hurry, hurry” message is there so that parents who may be feeling a sense of denial will not sit on their hands doing nothing. But no one stops to evaluate the impact of that message on all the rest of us. It is over the top. So don’t let it wind you up. This is a long game. As they say, it’s a marathon. If you sprint, you’ll never make it.

Take time for yourself and make time for your family as a whole. Don’t allow autism to become the topic of every conversation, the subject of every event, the basis for every decision. Enjoy your child, enjoy your life, enjoy your family, and find fun whenever you can. That’s what gives you the strength, the coherence, and the unity to handle all the rest.

With all the therapy and treatments that many kids with autism participate in, how can parents make sure that their family is still having fun together? Why is it important that families take a break from therapy once in a while and have adventures together?

Putting together therapy for kids that will be fun and engaging is hard work! It can strain every resource the family has to create a staffed, fresh, individualized program that helps their child learn skills, or to find a school that provides what a child needs. The impact on parents who are working so hard is felt by the whole family. If we spend all our time engineering teachable moments for our child to have with other people, we are short-changing ourselves and our own relationships.

It is important to remember how rewarding fun actually is, emotionally and therapeutically. It feels good! And when something feels good, you want to do it again! If you and your child do something together and it is fun, you have had a big breakthrough, made an important connection! Having a joyous time that you remember with happiness is its own reward. Parents of kids with autism spend a lot of time fabricating reward systems and manufacturing praise to reinforce good behavior. But dropping that and simply having fun with your child requires no fabrication because it simply is rewarding by itself.

Can you tell us about one or two of your favorite activity ideas from the book? Why do you like them?

Well, I can’t help but be partial to the things that were the biggest hit with my own family. The tree stumps were great. One day I was driving down the road and I saw a bunch of workmen reducing a tree. They were surrounded by logs and all of them gawked at me when I screeched to a halt and came over. But when I explained what I wanted and why, they were very nice. One of the guys offered to bring them by my house in his pickup when they were done, and he dropped off six perfect, fat tree logs of different heights. We used them in a zillion ways over the next year, lining them up to make stepping stones, circling them for drumming, tipping them on their sides and having rolling races. When we moved from that house, I wanted to take them!

Another activity that was great for us was learning to use a video camera to make performances rather than just capture candid moments. It started when Grandma came for a visit. My son loved when she read a Dr. Seuss book to him. So before she left, we made a videotape of her reading the book right to the camera. My son loved it. And it kept their connection in place even though she lives far away. After that we began making more performance pieces, even editing them and adding words to the screen. We taped birthday messages, rocketship countdowns, and all kinds of other things. The videos are fun for all of us to make, and we love watching them too.

Preparing for outings with kids with autism can sometimes be supremely overwhelming. Why is preparation so important?

Because there really is nothing worse than seeing an outing spoiled over something that could have been avoided. I try to walk through the destination in my mind and think what we’ll need or what might go wrong. Feeding ducks? Extra pair of shoes and socks. It’s a small effort, really. But wet shoes and socks? That can mean tears and time to go home.

You mention in the book that families may need to change holiday traditions or even develop entirely new ones. Can you share your favorite holiday tradition that was developed with your child in mind?

This one is easy for me: It’s our revised Thanksgiving. After some disastrous years trying to manage all three of my kids through travel, meals that held little appeal and crowds that were overwhelming, we started a new tradition. I make a turkey and fixings on the Tuesday or Wednesday before the holiday (while kids are still at school). We have it for dinner that night. And then on Thanksgiving Day, we pack leftover turkey sandwiches and take them off on a picnic. If friends are around, we love to have them join us, but we are also happy when it is “just us.” No pressure, no crowds. Just fun. Perfect!

This book is one of the most positive and upbeat books about autism that I have ever read. Your attitude is one of adventure and fun. Has that always come naturally to you? How did having a child with autism challenge your idea of family time and togetherness?

Coming to this place has been a journey. I was as tense and perhaps out-of-perspective as any new autism parent when my son was little. But time is a great healer, and we all get only one life. I didn’t want to spend mine with a grim outlook and in a constant state of battle. I tried that road and it didn’t make learning come any more quickly for my son, and it didn’t get us closer to a family image that seemed “normal.” Eventually I came to realize that the autism was somewhat immoveable. I had to stop trying to fit it into an expected family picture. I had to change. Instead of pushing on therapy all the time, I gave myself permission to let some things go. And as I did, I found that there was room for other activities in our lives, activities that created learning as valuable as anything I gave up.

I want my children to grow up remembering the fun times that our family had together. I want them to give that fun to each other when I am not available, and to their children when that time comes. There is only one way to put that in motion, and that is to live that way, today!

Why is it important to maintain an attitude of fun and adventure and how can parents who are often very harried maintain a good attitude?

Fun cannot be faked. If a parent is working hard to create fun for his or her children but never taking part in that fun themselves, there is a fundamental imbalance that any child can see.

It’s a mistake to allow sacrifice to be the only message your children receive about how your life and their life fits together. If you pursue release and enjoyment away from them but never with them, it tells children that they themselves are work. It tells them that their needs are important but come at a cost to you. And it tells them that you stand apart, their caregiver under obligation.

This is not what parents want to say to their kids, whether or not autism is in the picture. We want our children to know that we love them and we enjoy being with them. They add to our joy. We have to take off the “therapy hat” so our children can see that we don’t only want to fix them. We want them to know that we love them for who they are. Parents need a chance to show all their kids that real fun happens because we love each other and are together. Because what is true for all children is even more true for children with autism: What we say doesn’t matter nearly as much as what we do.

The simplest advice I can give is that the way to do it is to prioritize it. It isn’t that you don’t have time: It’s that you are placing your importance on other things. You may need to lower something else to make fun and family time part of the picture. It isn’t an easy decision to make but you will be rewarded.

I am not the person who is going to say that autism isn’t rough, because I know it is. But autism doesn’t have to rob us of our lives. It can take us down or we can rise above it and live full and happy lives anyway. That doesn’t come easily, and it won’t happen by accident. But if parents teach themselves to keep living, keep enjoying, and keep laughing, even as they continue to teach their children, they’ll see that diagnosis is not the end of the road.