Parenting your autistic child

Let's not sugarcoat it: it's tough to have an autistic child.

Some have likened it to unexpectedly ending up in Holland on vacation when you thought you were going to Italy. Really it's more like ending up in Slobovia where there is little accommodation to tourists, where you don't speak the language, where the roads are rocky and the sightseeing isn't always very pretty.

Like all parents, you never expected this to happen. It's incredibly disappointing on many levels and you wonder if you are up to the task. The good news is that, in my experience, most parents adapt in a very healthy and constructive way, and end up doing the best for their kids, themselves and their family. Many parents' and family's lives are even enriched by the experience -- learning new meanings of love and caring, and an appreciation of life that has been hard won by keeping your balance on a bumpy road.

"All politics is local" said my ex-congressman Tip O'Neil. I've found his pronouncement true for most situations, including parenting an autistic child. Just as every autistic child is different -- with different challenges, different strengths -- so too are all parents different in how and where they find support and comfort and happiness. There is no one magic answer to parenting an autistic child; you'll have to find your own balance, your own way. All politics is local.

Nevertheless, I'm going to share with you some things I've learned along the way that may ease the road or at least minimize some traps I've seen parents inadvertently fall into.

• Address your grief. All parents with an autistic child grieve: for the "normal" child they didn't have and for the challenges of they one they did. Grief is expected, grief is "normal", grief is even healing. Problems arise when the grief is never experienced and therefore never addressed and therefore never resolved. I've seen stoic parents stuck in grief's early stages: denying there is a problem, angry at the world, depressed at the unfairness of it all. All parents have these emotions, of course, but for some this is as far as their grieving gets. You can imagine how such unresolved grief might get in the way of their accommodating to their child's condition, to working with the outside world, to their (and their family's) happiness and well-being.
• Don't be guilt-ridden. "Never underestimate the parental capacity to feel guilty about anything that befalls their child!" (I said that). Nothing you did (or did not do) caused your child's autism. Period. Yet I've seen parents endlessly beat themselves up, convinced it was that glass of wine in the second trimester. Aside from being unjustified, guilt can be overwhelming and depressing and incapacitating.
• Find support. For some of you that will mean talking to other parents at your local Autism Support Center. Or joining a chat group on the internet. Or just baring your soul to a good friend. Whatever works for you. Don't go it alone.
• Make an alliance with a trusted professional. Whom can you trust? There is so much noise out there about autism. Everyone has a pet theory, a pet treatment. It is a truly bewildering landscape. Find a professional you trust and like (often one who was involved in making the diagnosis) who can serve as a guide and as a support over the long haul.
• Learn about autism. The more you know about your child's condition, the better you will understand him and the better you can help to craft a world that is responsive to his needs. (I like The Autism Source Book by Karen Siff-Exkorn as a helpful guide. Reliable information also can be found on the Autism Society of America's web site) .
• Organize! Suddenly life may be full of appointments and meetings and therapy sessions and chaos and who-knows-what else. Many parents, as an example, find it helpful to keep a loose-leaf binder that contains all the important information, dates of appointments, etc in one place.
• Learn how to be an effective advocate. Sorry to say, at some point most parents have to make some noise out there to get the services their child needs. There is no more effective advocate for a child than a persistent parent who knows how to work the system.
• Don't neglect your other kids. It's so easy to focus all of your limited energy on your disabled child. Many parents then make the mistake of thinking their "normal" kids don't need them nearly as much. The good news is that having a disabled sibling can be a very positive experience as kids learn about sensitivity to children who are different, who are challenged in many ways, who need the help of others. In fact, some of the most empathic, terrific kids I've met have been siblings of disabled kids. But that only happens when she doesn't feel neglected and undervalued by parents who don't remember that "normal" kids have emotional needs also.
• Don't neglect your adult relationships. 1/3 of marital relationships are unchanged by having a disabled child in the family, 1/3 are strengthened, and 1/3 go down the tubes. All relationships take care and work and open communication and sensitivity to each others' needs, but never more so than when raising a challenging child together. Don't forget your important relationships, just like your child, needs TLC if they are to thrive.
• Don't neglect yourself. The best parent of an autistic child is one who is happy and fulfilled in his/her life. If that means "selfishly" spending time doing what you love, so be it. If it means devoting most of yourself to your child, fine. You'll need to find your own way to balance your needs with that of your family.
• Be your child's parent more than his teacher. It's hard to know how much time to devote to your child's "therapies". When in doubt, be his loving parent, not his relentless teacher. He'll have plenty of educational experiences but only you can provide the kind of nurturing relationship that only comes from a parent.

Of course, I've just scratched the surface. I'd love to hear from parents and what they have found that helped them to accommodate and appreciate their trip to Slobovia.

Related topics: Video: Laughter Heals, New Intensity to Debate Over Autism Cause

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