Burnout and respite: Understanding
The Diagnosis And Getting Help

The article Understanding The Diagnosis And Getting Help offers a general overview of circumstances that parents and caregivers raising an autistic child may face, and suggests practical ways on how to manage them better.

Understanding The Diagnosis And Getting Help

Burnout and respite

What happens when break time doesn't happen? Burnout. No matter how much you love your child, there will be a day when your batteries just quit. Single parents, and couples who have a very unbalanced system of sharing responsibility for their child with a PDD, are at high risk.

Anyone who's ever had a horrible job knows the symptoms of impending burnout. You start feeling hopeless, numb, resentful, and angry, all at the same time. You may get physically ill, suffering from an increase in headaches, stomachaches, bowel complaints, and fatigue. You start fantasizing about running away.

Sadly, some parents really do run away--away from their share of responsibilities, away from their marriage, even away from their child.

His father simply saw him as flawed, and never became involved in searching for an answer or diagnosis. He abandoned me, Kevin, and his younger brother Jonah when the boys were seven and five, respectively. After I fought through the courts for support, he surfaced for occasional visits, but lives out of town. He never asks what is wrong with his son, and isn't careful with him when they are out in public. Jonah, who is thirteen now, "parents" his brother when the three of them are together.
--Cindy, mother of fifteen-year-old Jeffrey (diagnosed verbal dyspraxia with "autistic-like" features)

Don't let this happen to you or your partner. It's okay to say that you're overwhelmed. Only then can you look for a way to remedy the situation. If you have trouble doing it on your own, a good family counselor can help you set up a schedule that gives you some time off to clear your head, take a class, or just enjoy a quiet cup of tea or a game of golf. Usually it doesn't take much to lift the burden of your day-in, day-out duties--but you do have to ask.

Like Jeffrey's father, some parents deal with feelings of guilt, embarrassment, and shame with denial. These feelings are anything but easy to work out--particularly for men (or women) who have trouble articulating their emotions. A little understanding can go a long way.

Single parents, and couples who want their time off to be time together, should access respite-care services if they are available. Respite providers are trained to care for disabled youth and adults for the afternoon, overnight, or even during a family vacation.

Dhylan is very hard to manage at times, and therefore we don't go out without him (kind of like the American Express card). We just applied for respite care and are hoping we get it. A break is so important.
--Sally, mother of four-year-old Dhylan (diagnosed PDD-NOS with autistic features)

Respite care may be available at no or low cost through community agencies, public or private. A county caseworker or local disability organization should be able to put you in touch with respite resources in your area.

As an alternative, perhaps you can set up an informal respite arrangement with one or more parents of children with disabilities in your area. For young children, play-group co-ops can be a great idea, and they're one that many parents are already familiar with. The same concept can work with older kids and even adults cared for at home too, and can be extended to cover overnight care and occasionally longer visits.

If you have the financial resources, of course, you could hire someone with appropriate training to provide respite services in your home on occasion. If a nearby college has a special education degree program, students may be able to earn extra credit and gain valuable experience, as well as earning some money, by caring for your child.

Summer day-camp programs, overnight camps, "parents' night out" programs, and other options are also available for giving yourself some much-needed time off. It's not a selfish thing to do at all; in fact, avoiding burnout is an essential part of being a good parent for a child with PDDs. The sanity you save may be your own!

Go to next section of Article: Resentment

Understanding The Diagnosis And Getting Help is an excerpt from Chapter 10 of Autistic Spectrum Disorders: Understanding the Diagnosis and Getting Help by Mitzi Waltz, copyright 2002 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938.

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