CT FEAT: Families Helping Children Achieve Their Full Potential
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From one parent to another...10 Things I Have Learned
(Donna Cohen)


1. Be sure to have a life other than one of autism. Everybody in your family should have some interests and other friends, totally unrelated to your childís diagnosis.

2. Find two or more babysitters who you can trust, train them to work with your child, especially around communication, safety issues and routines, then be sure you get out of the house once in a while to do grownup things!

3. Trust yourself first, then trust the professionals. You know your child best. Internet lists such as the CT FEAT Parentís Only Listserv are a great place to get all sorts of opinions, and to benefit from other people's experiences. Before you know it, you'll find yourself answering somebody's question and the circle of information and friendship builds from there.

4. Educate yourself, not just about autism intervention but also about special education law. The sooner you do this, the sooner you will know how to advocate effectively for your child in order to be sure he or she receives an appropriate and quality program. Other parents of children with autism are invaluable for this type of help.
 
5. Do NOT try every "cure" you hear about. Before you put your child through anything, decide if it's worth the risk, if your family can handle it, if it makes sense, if you can handle the financial demands without other family members suffering, etc. Avoid unethical people, whose main interest is to make a buck off of our situation.

6. Get out in the community and teach your child the skills he or she needs to manage some family outings. For example, to begin teaching acceptable restaurant behavior, start by going to informal family places, off peak hours. That way if there is a problem, you will be more comfortable working through it. The earlier you do this with your child, the better chance of a "normal" family life.

7. Teach him or her a new skill that you know will be difficult, when BOTH of you are ready. If toilet training is an issue, be sure you will have the stamina to be totally consistent, otherwise you will frustrate your child and set him or her up for failure. My child did not go to sleep by herself until she was 8 years old, because I did not have the energy to do the training. Once I was ready to take it on, it took very little time; I was able to ride out the tantrums because I was ready to make this a top priority.

8. Take vacations. A change of scenery is a good thing. The key is figuring out how to make it work so that it's not MORE work than staying home. Bring along an extra adult, rent a house instead of a small cottage, buy a little TV/ VCR that you can lug around. Your family should not be cheated out of family vacations!

9. Stay in touch with friends and family members who do not have children with special needs. Talk about your children, just as most parents do when the topic comes up. Be sure to ask about their children and listen with an open heart. Recognize that this might be difficult for you at first; this is normal. Be patient when others offer unsolicited advice even when it seems wrong or insensitive. Just ignore it. They mean well, and itís fairly easy to change the subject when conversations are heading into uncomfortable topics.

10. Enjoy your child for who he or she is. It seems obvious to me now, but early on I was caught up in the autism and the ABA programs, and all of the research and reading, doctor visits, etc. I almost lost appreciation for the simple essence of who my child is. Now I focus on her strengths while I continue to work toward helping her reach her full potential.

 
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