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How my son's toilet training dilemma led to some valuable information

This post is by Kate Cortelyou who resides in Nashville, Tenn. with her husband and two young children. She is a retired giraffe keeper turned stay-at-home mom. 

If you told me back when my son was two that he would still be in diapers at the age of four I wouldn’t have believed you. Kids are supposed to be potty trained by two(ish), right? Many parents of autistic kids know otherwise. Potty training is a major struggle in our home and after two years of trying everything in the books, we are pretty much right where we started. Eyeballs deep in diapers. No end in sight. It’s a frustrating (and expensive) place to be.

One of the biggest frustrations as a parent on this journey has been the lack of information that is compiled and offered to families. They have parenting books to read when you’re pregnant on any topic. But when it came to entering this world, I couldn’t find my copy of “Welcome to Autism: This is What You Need to Do, Who to Call, What to Ask For, What Can Be Offered, Who to Call to Get Services Approved, What Specifically to Ask For So You Actually Get These Services Approved, Etc.”. In our dreams, right? That is where blogs like Autism Speaks are so amazing. Parents can share invaluable information to other parents who are still in the dark about a variety of topics.

My son turned four last Friday and we are just under a year into his diagnosis. Last weekend I was googling something along the lines of “autism delayed potty training diapers” and stumbled across an article that mentioned if your child has a medical diagnosis of autism and is over the age of four, Medicaid will provide you with a monthly supply of diapers, cream and wipes at no cost. Is this real?? I wasn’t buying it so I did some more digging. My son does have Medicaid and eventually I was set up with a once monthly shipment of diapers, cream and wipes. I couldn’t believe it. I immediately thought of all the parents that don’t know this valuable information.

Dig out your child’s insurance card and call the customer service number on the back. Tell them your child has a medical diagnosis of autism (if they do), they are over the age of four (if they are) and you want to who they are in network with to provide you supplies for incontinence problems. It will vary state by state. Some states only work with one or two home health vendors. In these states, often all you must do is call the vendor and request diapers. Call that number. The company will need a note from your child’s doctor stating the medical diagnosis of autism and insurance will need to be verified. Next, you answer a few questions about your child’s size, approximately how many wipes and diapers you use in a month.

Having an older child who isn’t potty trained can put a huge amount of stress on the family. This service is provided to families to help. Don’t be afraid to take it. Private insurance plans vary and may or may not cover diapers. Call and ask. Ask again. The squeaky wheel gets the grease. Or in this case: the diapers. Good luck.

For toilet training resources check out our tips from the experts here and our toilet training tool kit here.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.