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Through A Parent's Eyes

Mothers reflect on what they have learned about raising a child with autism/PDD

About our children...

He isn't stubborn, he's consistent. He isn't volatile, he's passionate. He isn't obsessive, he's neat. I am not cranky; I'm the mother of three sons. -- K.C.

Parenting my son is different. A lot of what we've been taught as parents -- and what the schools reinforce -- about childrearing and consequences for behavior turns out to be counter-productive for children like my son. -- D.M.

Our children work very hard to keep their unruly sensorimotor systems in balance. It's as if they are holding down a second job on top of whatever we expect them to do in a typical day of school or family activities. -- P.A.

A child is learning and growing all the time, not just when someone is "teaching" or "working with" her. -- R.V.

I've learned that, when my son is upset or anxious, even though it might look like he wants to dialogue it's better if I keep quiet and detach. This helps him to process on his own instead of adding more stimulation. I let him know that I'm nearby and ready to share when he is. -- D.M.

All our children are different, and will respond differently to a given intervention. It is reprehensible to make predictions based on a child's label or on the severity of his impairments and preconceptions about them. -- J.L.

My sensitive daughter has made me aware that so many of the things people do to children are intrusive: strangers coming up to a child in the supermarket and pinching her cheeks, relatives rushing to pick up a child they haven't seen in months, hairdressers battering a child with personal questions... -- R. V.

I've learned that his diagnosis makes him different but he has all the same feelings, thoughts, hopes and dreams as any other human being. -- D.M.

He runs the full gamut of emotions, but differently than anyone else. He lives in his own skin and we live in ours. What for me would be a small annoyance or slight, for him may be overwhelming and unbearable. He may also feel joy and comfort in a more intense way. -- K.C.

My son has always needed his world to make sense. His innate drive to bring order out of chaos is awesome. When he was young we didn't always understand what his intense interest in things like road maps, street signs, and big industrial storage tanks was all about, but slowly we realized this was not a game of trivia: he was working on unlocking the secrets of how the world is ordered, how categories are formed and connections are made. Viewing his interests in that way was productive for him and for us. -- P.A.

It is important to be aware of when my son can respond and when not. His ability to do so fluctuates. -- R.G.

Fast-paced modern life is not for my son. The tighter the time schedule, the more likely problems are to occur. -- D.M.

Much of my son's anxiety can be allayed if we explain what is happening and why, as many times as he needs to hear it. -- R.G.

Homeschooled children have made great playmates for my daughter. They and their parents have enjoyed her and viewed her as herself, not as a label or a child who has something wrong with her. -- R.V.

We've learned through facilitated communication that my son absorbs everything going on around him. What we've also learned is that we can facilitate his responses to movement or even his speech by quiet suggestions and choices, not demands, and by allowing him all the time he needs to respond. -- R.G.

My son makes people think: What do I really need to have from another person? What do I really need to live with someone, work with them, care about them? It is usually different from what they believed! -- K.C.

About ourselves.....

Listen and learn. Learning to listen to my heart's voice was the most powerful thing I did in parenting my son. I had to learn to listen to myself and to him. -- D.M.

My child taught me that I couldn't have a loving relationship with him and still expect him to be someone else. -- K.C.

I've learned to value collaboration and give up on the illusion of control. Thanks to my son, I think I've become more laid back in my approach to life, more appreciative, more attuned to the here and now. He gave me an advanced course on perspective, which keeps the complex landscape of our family life in balance. -- P.A.

I always thought that I wouldn't be able to bear having a child with a disability. But now I've found a strength in myself I might not have found otherwise. -- R.V.

It is hard to readjust your style of interaction with someone who outwardly looks unaware and for years was believed to be so. It is one thing to know intellectually, after my son's success with facilitated communication, that the truth is otherwise. It is a slow process to bring change about. After seven years, I still have occasional lapses. -- R.G.

He is my first child. I learned early that my role as a parent was not to control him, but to support and love and comfort him. It was a lesson that he and I bene-fitted from, and so have his younger brothers. -- K.C.

I've learned that even though the doctors, psychologists and other professionals have a lot of learning, they do not always know what is best for your child. By following my instincts and trusting in the goodness of the universe, my son and I can best decide the direction his life's journey can take. Keep an open mind. -- D.M.

Parents, don't be afraid of standing out! I've discovered that we already do, so we might as well take some responsibility for it. -- K.C.

About the world we live in: What our neighbors and friends, teachers and other professionals should know.....

Teachers and therapists who tell me they don't know how to work with my son have never tried to establish a relationship with him. Once a mutually pleasurable relationship has been established, he will show them the way to work with him He knows how his body and brain function. Respect his knowledge and follow his lead. -- J.L.

Parents get very tired of having everything their child does described as "behaviors." Let's ban the word! If you don't want to come inside on a nice day, no one says that you're engaging in avoidant behavior. If you want to take a break and socialize, no one says that you're manifesting attention-seeking behavior. -- P.A.

Don't psychoanalyze! Too many professionals have misinterpreted and over interpreted my son's actions, seeing them as fraught with meanings and repressed emotions when they may simply be his way of reacting to a situation, or may not even be intentional. Before venturing a translation, look at your own part in the situation and try to see his actions in context. -- D.M.

Teachers who demand that children (including children with difficulties in sensory regulation) sit on the floor in a perfect circle with their legs crossed for an extended period should be forced to assume the same posture during all faculty meetings and conferences. -- J.L.

What happens to us is never as important as the meaning we give it. Why should a child's label mean he must be changed to fit in? Maybe it means our world needs to change, to become more flexible, more accepting, more just. -- P.A.

Living in a group home, the gap between the life my son would like at this moment and what is offered is cavernous. Most people cannot bring themselves to seriously consider what he proposes. It is hard to maintain our patience. But persevere we must. -- R.G.

People need a life more than they need therapy or remediation. I have never seen it fail that when people get a life -- friends, fun, respect, a chance to make a contribution -- the things for which they supposedly needed therapy decrease to insignifucance or disappear altogether. -- P.A.

As a therapist or teacher, never forget that relationships are a two-way street. If you want my child to do something for you, then you must do something for him first. People do things for others because they like them or want to please them, or because they fear them. You have a choice in how you behave; you need to model proper behavior, not just demand it of my child. -- J.L.

When it comes to consequences or punishments, no one could be as hard on my son as he is on himself. Give it up, and help him not to blame himself when things go wrong. -- D.M.

Let our children be givers, not just takers. Allow them to help you, thank them for their ideas and criticisms, apologize when you are wrong and let them offer you their forgiveness. (Maybe this is how children develop that "Theory of Mind" that people with autism are not supposed to have!) -- P.A.

I would like to see a grade school curriculum where 90% of the instructional time is spent in one form or another of interactive learning, and10% in compliance skills. Unfortunately, the reverse is an all-too-common scenario. Our children master compliance skills, but don't know how to learn. This is the case in "regular" education; in special education it is exacerbated. -- J.L.

What our children are learning is not just found in a school book. The most important thing they learn on any given day may be found in your attitude toward them, the way you negotiate problems, the way their emotions and feelings do or don't connect with what's happening. They are either learning that the world is open to them and makes sense, or they are mastering the limited contents of a closed bag of tricks. -- P.A.

Written by AutCom Moms Pat Amos, Kris Copeland, Rena Gans, Joan Levin, Diana McDevitt, & Rachael VerNooy.


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