These are things that work for Nathan. They might not work for your child, and that's okay. Take what helps and leave the rest. Your child's teachers, therapists and doctors know your child, so run things by them.

Every day

• A picture schedule. We have a strip of Velcro on the fridge with pictures of each part of the day: breakfast, get dressed, bus, school, snack, swing, bath, bed. Nathan takes each one off when it's done. Knowing what comes next makes everything easier.
• Warnings before changes. "Two more minutes of trains, then bath." We use a kitchen timer so he can see and hear when time's up.
• Stories about new things. Before anything new (dentist, a wedding, the first day of school) we make a little book with pictures and simple sentences about what will happen. His speech therapist taught us how. We read it over and over for days beforehand.
• A quiet spot. Nathan has a corner behind the couch with a beanbag and a blanket where he can go when the world gets too loud. It's his, and nobody else is allowed.
• Haircuts. Rick does them at home now, in the kitchen, during Nathan's favorite video, a little at a time. It's not a great haircut. It's a peaceful haircut.

School and the IEP

Under the federal special education law (IDEA), kids with disabilities have a right to a free appropriate public education, and each child who qualifies gets an Individualized Education Program, or IEP, written by a team that includes the parents. Some things we've learned:

• You're a member of the team. You know your child better than anyone at that table.
• Bring someone with you, a spouse, a friend, or another parent who's been through it. Take notes.
• Put your requests in writing and keep copies of everything.
• You don't have to sign at the meeting. You can take it home and read it.
• Every state has a parent training and information center that helps families with special education. Ask your school or your local Autism Society chapter how to find yours.

Taking care of the rest of the family

• Ellie needs her own time. Every Saturday morning one of us takes her out for donuts, just her.
• Take care of your marriage. We have a date night once a month when Grandma watches the kids. Some months it's just Wal-Mart and a milkshake, and that's fine.
• Ask about respite care. Some areas have programs that give parents a break. It took us two years to ask. Don't wait that long.

A word about cures

Once people find out your child has autism, they'll send you every miracle they read about. This year everybody asked us about secretin. There are real studies going on right now, and we decided, with Nathan's doctor, to wait and see what they find. Our rule: ask a lot of questions, ask what the proof is, and talk to your child's doctor before trying anything.

Books and groups that helped us

• The Autism Society of America. Our local chapter has a parent group that meets once a month. It's where we found our people.
• Let Me Hear Your Voice by Catherine Maurice, a mother's story of her two children and ABA. The first book we read after the diagnosis.
• Thinking in Pictures by Temple Grandin, who has autism herself and explains from the inside what it's like. It changed how we see Nathan.

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Last updated August 29, 1999