When Lynda came to live with us in 1975 she was three years old and weighed 26 pounds. She was able to wear the largest size pampers (in the purple box with the cute baby). Luckily Lynda was small so she was able to wear pampers a little longer than a typical toddler. However, because Lynda was constantly taking her clothes off we had to dress her in jumpsuits that zipped up the back. This was so that she wasn't sitting around in her birthday suit all of the time. She didn't understand the whole clothes on or clothes off routine and frankly, toilet training was way down the list of priorities. Controlling her seizures, determining why she vomited after almost every meal and passed blood in her stool topped our list... along many less life threatening but important issues.
So what do you do when your child is five years old, not toilet-trained and there are no commercially available disposable diapers on the market that fit her? Well, we couldn't use cloth diapers. We tried that and it was a disaster. We couldn't wait until youth size or adult diapers were introduced onto the market. That didn't happen until 1987 when Japan introduced adult diapers and they began to grow more popular in the 1990's.
Between the years of 1977 and into the early 1990's we made larger diapers for Lynda from two pampers and duct tape. When I see all of the cute patterns for duct tape, I think about how much I would have loved having those back in the day. Of course, when there is cute duct tape patterns there are also youth and adult diapers. There are so many different types and brands of adult diapers now that it is difficult to even figure out which one someone might need.
For about 13 years, Larry and I made diapers every day. Jan had to make diapers at school. In addition to changing her diaper babysitters and my mother also had to make the diapers. We did it by trial and error and necessity. We cut the top four or five inches off the top of the front and back of a diaper. We duct taped that piece to the top of the diaper, front and back. We then took the plastic off the remaining part and folded it and used it as an extra double padding inside the diaper. To extend the size of the diapers around her waist, we folded pieces of paper towels the size of the duct tape so that the tape never touched Lynda's skin. The sticky tape extended out a few inches on both sides to attach it.
Basically we used two diapers each time we changed her and lots and lots of duct tape. I estimated we probably changed over 2,190 diapers (averaging 6 diapers a day...if we were lucky) a year. Over 16 years, a safe estimate of diapers and changes would be 35, 040 changes and twice that number of diapers used....70,080. You can bet we were thrilled when adult diapers became commercially available. Of course, we didn't have any financial help because we lost Lynda's benefits when we adopted her. If you don't have a family member who needs products like larger sized diapers when they haven't been made commercially available yet, it would never cross your mind of the need for them. Other parents handled the challenge in different ways. This was our solution. It just became a part of our daily routine. Sometimes we were able to make a bunch of diapers in advance. Our goal was to keep Lynda dry and comfortable. At the beginning it was until we could get her to stop taking off her clothes and work on toilet training her. After the stroke, the goal was just to get her to where she could stand up and walk to the place we wanted to change her diaper instead of us having to carry her. Then as time went on it was just a part of taking care of a child who at the age of 20 had the cognitive abilities of an infant.
When parents have a baby, the expectation is that at the longest they will be using diapers until the child is three. Not that long if our child's a girl. We're celebrating if we've managed the complete ritual by age three with a lot of our boys. With a child with special needs, toilet training is a milestone often mastered at later times. With consistency and determination on the part of the caregivers most individuals with autism can be toilet trained and independently handle those matters without a great deal of gnashing of teeth (on the part of the parent or child). Lynda's situation was different in so many ways and the bottom line is we did what we had to do and moved on to the next part of daily living.
If you are a parent of a child with autism in 2013 the road ahead is still going to be bumpy and take a few detours now and then. There's isn't enough of the correct types of ABA therapy for children in the critical periods of their development (birth to seven) and physicians often are not fluent enough in autism to provide the best practice in medication and services. You will have to advocate and there is no doubt you will get tired and want to give up at times. Then you'll look into the eyes of your child and realize why you're traveling this road in the first place...to provide the best of everything you can for your child on the spectrum.
If you happen to have an older child who isn't yet toilet trained just remember this. You don't have to make their diapers. It is now the law that an education be provided for your child as imperfect as it is. This wasn't available to Lynda in 1975 because she wasn't six yet even when the law limped into place. There is much to change but we autism dinosaurs who were there before the days of adult diapers are still fighting and praying for all of you younger parents beginning the journey we have traveled. Hang in there! Your child is worth every struggle you go through.
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