• Elizabeth Gerlach, a pioneer in autism treatment, said, “Life with autism is a marathon, not a sprint, so wear comfortable shoes.” As you would in a marathon, pace yourself. Be good to your body. Look ahead to those who are running before you for inspiration. Set goals and gauge your progress and adjust your plans based on goals.
• Grieve together and work together to help your child and your family. Remember, everyone grieves differently. Some people need to talk. Others need to be quiet. Find the kind of support you need from one another and from support groups/friends/family.
• Use the gifts to have to help your child. One parent may be better at research and doctors appointments. The other may be better at supporting the family in other ways. Different families are different. Encourage one another and appreciate one another. Work as a team.
• Don’t forget your other children. They need you too. Explain autism in a developmentally appropriate way and answer any questions they might have.
• If you are married, nurture your marriage.
• It is so easy to become isolated. Do whatever you can to be part of a family, a group of friends, or a community. Ask your Regional Center Coordinator about support groups and community resources. You nay want to check the Internet for resources as well. There are thousands of other families who know what you are going through.
• Talk to other parents about treatments that have worked for their children. Often parents know about new and effective biological and educational treatments before some physicians, teachers or therapists. Ask a lot of questions.
• Autism is treatable and improvement is possible.
• Don’t let what you think you know get in the way of learning.
• Contact a developmental pediatric specialist that can help you with the many questions you may have.
• A good book regarding possible biological issues in some autistic children is Children With Starving Brains by Jacqueline McCandles, M.D. Dr. McCandless has a granddaughter with autism and her practice is in Woodland Hills.
• Most children have clues to the pieces of the autism puzzle that are relevant to them:
Oatmeal to runny diapers – gut issues
Picky eating – may be dietary issues
Eye stims – may need Vitamin A or cod liver oil
Unexplained fever – viruses
Giggly and/ or emotional – yeast
• A hair test for heavy metals only costs about $80 through Doctor’s Data. Direct Labs will provide a physicians referral for a reasonable fee. While mercury does not usually show up in the hair, there are “counting rules” for other heavy metals and essential minerals that are like mercury’s “footprints”.
• Think collaboratively and expect that professionals will want to help your child. If they don’t agree with your opinions or what you are asking, assume it is because they need more information to help you. If they still cant help you, try to find someone else who can. Try to avoid thinking someone is “against you” or “stupid” or “ignorant.” It doesn’t do you or them any good.
• Keep records. You may want to keep a notebook where you list symptoms, therapies, and other treatments every week, or every, month so you can look at your child’s progress. Sometimes it is difficult to remember when a symptom started or went away. The Autism Research Institute website has a questionnaire called the ATEC that lists a variety of symptoms. You can fill it out before beginning any treatment, then again after you have been doing the treatment for a while to gage improvement.
• Stress takes its toll on the brain, so reduce stress whenever possible. If you feel like to have “brain fog,” it may be physiological. Compensate for this making lists and figuring out a way to organize yourself. Take a good multivitamin and antioxidants. Get sleep. Exercise. Pray or meditate. Take care of yourself so you can take care of your family.
• Don’t be afraid to ask for help. Be specific. If someone asks how they can help, ask them if they can go to the store for your or baby-sit or just come over while you pick up piles on the floor – or ask them to just keep the kids safe so you can take a nap.