Part 2: What I wish I knew when my daughter was first diagnosed with autism

Guest post by Carolyn Chambers

As the mother of a 9-year old daughter with autism (Kellie was diagnosed with autism in January of 2008 at the age of 4), I’ve learned some things through networking and making friends with other parents who have kids with autism. Now I want to share more tips with you.

Just because a school district (or Early Intervention) says that a certain program is most appropriate for your child doesn’t mean that it is. As I mentioned in the first part of my blog post, doing your own research is key. Here’s a helpful website about special education law and advocacy for children with disabilities: http://wrightslaw.com. If you don’t agree with your child’s school recommendations, request independent evaluations to help determine what is most appropriate.

Treat each professional (school and medical) who works with your child with respect and as an integral part of your child’s “team.” If you feel that someone is challenging, find someone more appropriate to join the team.

As you are proactively communicating with your child’s team of doctors and teachers, make sure they are communicating with each other about treatment. Is everyone aware of what the other one is doing? This is especially important if your child responds to something particularly well in a session. Share that information with every team member. This will make your child’s programming much more effective! And, if something isn’t working for your child, be sure to let everyone know that as well.

Use your child’s “quirks” or obsessions as motivators for therapy sessions. My daughter went through a Super Mario phase, so we incorporated Super Mario into her sessions as much as possible which was successful.

Another tip for parents who are married: don’t forget your marriage! You and your spouse need quality alone time whenever possible. Autism can be extremely stressful on a marriage. Often parents get overwhelmed; there is simply too much going on in their day-to-day lives, and “date night” loses priority. This is another reason why connecting with parents who have children with autism is essential. They can recommend child care providers and share their advice for focusing on marriage while raising a child with autism.

While you make time for your marriage, you also need to carve out some “me time.” Time to go out with friends or do something you enjoy by yourself that isn’t autism OR child-related. Maybe that means going to Starbucks with a good book.

Families of children with autism need to budget for out-of-pocket expenses for therapies and treatments, so speaking to other, more experienced parents helped me. Unfortunately, many of the therapies are not covered by insurance. I still have a hard time getting health care benefits for my daughter’s speech therapy, which is what she needs the most. However, there are some creative, legitimate ways to get needed therapies covered and/or reduce your out-of-pocket expenses. Here are excellent resources: http://health.groups.yahoo.com/group/autism_insurance_information and my all-time favorite: www.tacanow.org/family-resources/autism-on-a-budget-series.