Family Life with Children with Autism Spectrum Disorders
The sooner you realize that your family life will not resemble the Waltons', the better off you will be. Take heart from knowing that your family life would probably never have resembled that perfect ideal, and if it had, you would have been bored out of your skull. Think of the Addams's family and how much more fun they seemed to be having regardless of the daily household disasters.
Life for your family will never be boring from this point on. It may get monotonous, but it will not be boring. Start buying rubber gloves, cleaning liquids, disinfectants, and carpet stain removers in wholesale quantity, as you will be using them often. I wonder if the sales figures for cleaning materials rise at the same rate as autism spectrum disorders (ASDs) diagnoses. But I digress.
It is not easy striking a balance between family life and all that is inherent to having a child with an ASD. It is true that you probably will not have the family life you envisioned. But many people who do not have a child with an ASD do not either. People get divorced, lose a partner or a child. They grieve, but then they move on and rebuild another kind of family life. And families with a child with an ASD need to do that as well. Grieve about the loss of your expectation for the family life you envisioned, and then start building the one you will have. You owe it to the rest of the family. It will be hard work, but you can do it.
To start with, here are some basic guidelines to keep in mind:
Do not isolate yourself and your child. Primarily, parents must take care that the family does not become isolated. This is vitally important for all members of your family. Now, more than ever, you need to be surrounded by relatives and friends, and so does everyone in your family. Isolation occurs because you are too tired to go out, you cannot handle your child in public, or you are embarrassed by your child's behaviors. People soon stop inviting you over, either because you have previously turned down invitations from them or because of your child's behavior or because you are obsessed about ASDs and that is all you can talk about. You stop inviting people over because you are too exhausted to play hostess and you are embarrassed by your child's behaviors. Do not be one of those people who says, "I remember when I used to have a social life. Look, I even have pictures to prove it."
Get over caring what other people think. Do not be intimidated by looks and remarks when you go out in public, and do not feel you have to justify your actions to family members and friends. If you are too embarrassed to take your child out in public, then you need to analyze why you feel that way. If it is because of your child's behaviors, and they are very disruptive or unsafe, then you need to work on those behaviors. If it is because you feel uncomfortable that your child appears "odd," then I suggest you get over it. Your child is here to stay, and he needs your support. And the general public needs to be reminded that none of us is perfect.
Get your child's worst behaviors under control. This is never easy and can sometimes be extremely difficult. However, this child is your responsibility now. You need to help him. First you need to try to understand what is causing the behavior. If you can eliminate the cause, that's great. If not, you need to try to get disruptive behaviors under control. It is not fair to the rest of the family, nor will it make you friends out in the community. There are positive behavior techniques that can be used to decrease and eventually eliminate the worst behaviors, and with practice a parent can learn how to use them. Your pediatrician or local ASA chapter should be able to provide you with a professional who can help you. If not, there are various books you can consult that will explain in simple terms what to do.
Keep your sense of humor and take time to laugh. Surround yourself with uplifting media. No matter how bad things are, you can and will make it through today. Play good upbeat music, not the tunes that make you feel even more depressed. If you have ten minutes to read or watch TV, make sure it is something amusing. Don't waste it on reading or watching the news. Usually the news is depressing, and you can't do anything about it. Keep entertaining videos around the house, as well as light reading. Humor helps, even if it is gallows humor. You may not be able to control the situation you are in or solve your problems, but keeping your mood uplifted will help you have a more positive frame of mind.
Do what you can to stay healthy. Take care of your physical health. Try to eat properly, catch up on sleep when you can, and exercise regularly. Even just a twenty-minute walk three times a week will keep your body healthier and will make you feel better. Your physical health affects your mental health, which in turns affects the whole family.
Remember that you are only human. You may try to act like a superhuman and do the impossible. That is OK, if you are feeling up to it. However, watch out for burnout. Revert to acting human and do not feel guilty for only doing what you can. Think of all you have accomplished, not what you wish you had done.
More on: Autism
Excerpted from Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and Other ASDs©2004 by Chantal Sicile-Kira. All rights reserved including the right of reproduction in whole or in part in any form. Used by arrangement with Alpha Books, a member of Penguin Group (USA) Inc.
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