Paying for Services
While government-funded services are free or low-cost fee based (specifics depend on the state where you live), they can sometimes be in short supply. Private services are costly (they can run $40,000 per year or more) and not covered by insurance in many states. States such as South Carolina and Texas passed legislation in 2007 requiring coverage for some autism therapies. Advocates at organizations like Autism Speaks are pushing to expand insurance coverage in other states.
Check with your health insurance company to see what services are covered and with your state representative to see what legislation is under consideration if your insurance does not cover autism-related services. (Read on for state-by-state insurance laws, plus more on health insurance coverage issues at Autism Bulletin.)
Caring for the Caregivers
Learning about autism spectrum disorders will influence how every member of your family looks at people with autism in particular and the issue of disabilities in general. The experience of managing all that's needed to help a child with disabilities—and your own emotions—also can be a blueprint for burnout.
Waiting for services, watching for signs of progress, learning a different way of parenting so you can manage your autistic child's behaviors and respond to his needs … together, it's more than a full-time job. And if you have more than one child, the new dynamic you introduce invites a new level of sibling rivalry, as your "typically developing" child seeks attention and responds to the different parenting techniques she sees her brother receiving.
Take breaks. You need to recognize the demands this places on everyone in the family and look for opportunities to give autism breaks to each person. This could mean nights off for you or your partner (preferably together if you can find a babysitter). Given all the necessary energy you're spending to help your autistic child grow and develop, it's a good idea to make outings with typically developing children, so you can show them they are special, too.
Stay connected. Look for the chance to talk to other parents going through the experience of raising kids with autism. You can find them in the waiting rooms at therapy sessions, at school drop-offs, and in many online forums, parent blogs, and websites.
Family members also may find support groups helpful. It could be a group for parents, or just for moms, dads, or siblings. This is a way for family members to spend time with others who understand what it's like to have a loved one with a disability like autism.
Caring for the caregivers also can be less formal. Look for opportunities for casual celebrations, dinner-time toasts, family hugs, spontaneous cheerleading, and upbeat reminders of how proud you are of your child and his siblings for their hard work. Later, make sure to give yourself a moment to think about what life was like three months, six months, or one year ago. When you feel things are better, that perspective is priceless.
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