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CARING FOR AND AUTIST CHILD
What is Autism?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not
Otherwise Specified), Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.
What causes Autism?
The simple answer is we don't know. The vast majority of cases of autism are idiopathic, which means the cause is unknown.
Caring for the caregiver
Changing the course of your child's life with autism can be a very rewarding experience. You are making an enormous difference in his or her life. To make it happen, you need to take care of yourself. Take a moment to answer these questions:
- Where does your support and strength come from?
- How are you really doing?
- Do you need to cry? Complain? Scream?
- Would you like some help but don't know who to ask?
“Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.”
Get going. Getting your child started in treatment will help. There are many details you will be managing in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you will be more able to focus on moving forward. It may also free up some of your time so you can educate yourself, advocate for your child, and take care of yourself so that you can keep going.
Ask for help. Asking for help can be very difficult, especially at first. Don't hesitate to use whatever support is available to you. People around you may want to help, but may not know how. Is there someone who can take your other kids somewhere for an afternoon? Or cook dinner for your family one night so that you can spend the time learning: Can they pick a few things up for you at the store or do a load of laundry? Can they let other people know you are going through a difficult time and could use a hand?
Talk to someone. Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Someone who just listens can be a great source of strength. If you can't get out of the house, use the phone to call a friend. Link to Family Services
“At my support group I met a group of women who were juggling the same things I am. It felt so good not to feel like I was from another planet!”
Consider joining a support group. It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources for information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you. You may find you aren't a “support group kind of person.” For many parents in your situation, support groups provide valuable hope, comfort and encouragement.
Try to take a break. If you can, allow yourself to take some time away, even if it is only a few minutes to take a walk. If it's possible, getting out to a movie, going shopping, or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that it will help you to be renewed for the things you need to do when you get back.
Try to get some rest. If you are getting regular sleep, you will be better prepared to make good decisions, be more patient with your child and deal with the stress in your life.
Consider keeping a journal. Louise DeSalvo, in Writing as a Way of Healing, notes that studies have shown that “writing that describes traumatic events and our deepest thoughts and feelings about them is linked with improved immune function, improved emotional and physical health,” and positive behavioral changes. Some parents have found journaling a helpful tool for keeping track of their children's progress, what's working and what isn't.
Be mindful of the time you spend on the Internet. The Internet will be one of the most important tools you have for learning what you need to know about autism and how to help your child.
Unfortunately, there is more information on the web than any of us have time to read in a lifetime. There may also be a lot of misinformation. Right now, while you are trying to make the most of every minute, keep an eye on the clock and frequently ask yourself these important questions:
• Is what I'm reading right now very likely to be relevant to my child?
• Is it new information?
• Is it helpful?
• Is it from a reliable source?
Sometimes, the time you spend on the Internet will be incredibly valuable. Other times, it may be better for you and your child if you use that time to take care of yourself.