Jan 21, 2013

Look Who's Diaper Free!

Well, not quite, but nearly. Hopefully.

I was counting it up recently and since my 3 kids are about 3 years apart in age, and Ainsley has spent an extended time in diapers, I have been diapering for nearly 12 years. I don't think there has been a time that I could leave the house without some sort of diapering supplies, in all that time.

That is a LONG time. There are a bunch of things that are hard about having a medically intense special needs child. One is when you realize that you could very well be changing diapers for the rest of your life.  Especially when the diapers become adult sized, and your child grows...eh-hem...hair. Yes. I know. It's a shocking realization. Of course there are special needs kids who are probably able to toilet train without issue. But what do you do when: 
  • Your child can't walk to the toilet or even stand without help.
  • Can't pull their pants up and down.
  • Can't wipe.
  • Can't even tell you when they need to go.
My assumption was that we'd be in diapers. Forever. But then I learned from other parents on the Tracheostomy.com Support Forum that some parents were choosing to put their child on a toileting schedule, even children with extreme physical limitations.

Being more of a creative type, I'm not so good with managing time. It has a way of getting away from me and all my friends know that I've never been good with schedules. The idea of being tied to a timer for the rest of my life was just about as appealing as the prospect of adult diapers. And that is saying something! And yet, I couldn't help but wonder, what if Ainsley COULD do it. And we didn't ever try? I am the person who is forever wondering WHAT IF.

She has been wearing pull-up style diapers for a few years (GoodNites actually, for size), during the day. We would take her to the toilet when she asked (by signing potty) which was infrequently. Over the past year or so any time we've tried having her wear underwear at home she would be okay for part of the day but would inevitably have an accident. But lately, she was staying dry most schooldays while the nurses took her on a schedule. She was also often dry when she woke up in the morning. In November I came up with a plan and warned the nurses that in January we would make the switch to underwear.  Trying is the only way to answer the WHAT IF.

I could tell the nurses were a bit nervous, knowing that if they didn't get her to the toilet she'd be wet and require a change of clothes. I was hopeful that we could get away without plastic pants (which are nearly impossible to find in bigger sizes unless you order from an adult incontinence store), which I knew she would hate anyway. Times that we tried underwear at home and she peed she hated being wet and would crawl over to me and sign potty so we would change her. I knew that she needed to FEEL WET in order to get to the next level.

In the mean time, during December, I prepared the nurses and school for this transition by telling the my plans and asking them to act as if she was in underwear and try their hardest to avoid letting her wetting her pull-up. I also explained the plan to Ainsley and reminded her during that month that soon she would be wearing underwear. I think that month of "pretend" helped prepare everyone.

Last MONDAY we sent her to school for the FIRST day in her Hanna Training Unders. They have well padded center layer that is quite absorbent (helpful so the child feels more uncomfortable when wet building in a natural consequence and also better at controlling the mess). Luckily she has a skinny bum since they stop at size 4 and she is a solid size 6X-7. I love seeing her crawling around the house free from diapers, I imagine she must be so much more comfortable.

My friend Katie from the trach forum sent us a button device that can record a message. I recorded "I need to use the potty." on it and hung it from a cute necklace so she can wear it at school and push the button if she needs to use the toilet in between scheduled visits. It's working pretty well, and the nurses report she sometimes does push the button to tell them that she needs to go. Thankfully she doesn't push it all the time for fun. While Ainsley has an iPad communication device at school it is not with her every moment of the day, so the necklace is a handy way to be sure that she is "heard". She will use the sign for potty, but of course few people know sign language and a person has to be watching to see. For less mobile children in certain environments it can be difficult to get an adult's attention.

You can buy these devices here, and they also sell a clip style. Any simple recorder might work just as well. I simply threaded the ring carefully around the elastic of the necklace.

For now I am a slave to the timer. But I am hopeful that this is just a step toward potty independence.

For now we are trying to keep her dry, so the timer is set for 1 1/4 hour. We found through trial and error that every 2 hours wasn't often enough at home. Eventually we'll increase the amount of time and hopefully get to a point when we can lose the timer. Sometimes we find that she will pee just a little, and then come find us, sign potty, and then she'll pee more in the toilet. It's encouraging that she has some control.

She has also started to poop in the toilet. Hooray!!! It's been a long process. Even though I would do the "potty dance" every time she pooped in the toilet, and she thinks it's hilarious and loves it, she still preferred to hide and use her diaper. Recently I tried really hard to pay more attention and catch her when she needed to go. After a month or so of more successes we saw a shift. Now that she is using the bathroom often to pee, we seem to magically have less reluctance to use it for poop. Since we have to help her we are in the bathroom with her. She now will point to the door when she has to go poop so that we will leave and give her privacy. How cute is that?!

We are hopeful that this week is just the beginning of a diaper free life for Ainsley. (For the time being she is still using GoodNites while she sleeps.) To determine if your special needs child is ready for toilet training read this article here or this one here.  

* Update as of 2015. Ainsley has indeed been diaper free and fully "toilet trained" since age 7 in 2013. After mastering daytime dryness she also started wearing training underwear to bed. She transitioned to normal underwear (not trainers) the same year. Eventually she no longer needed to be on a schedule. Now days she can use the bathroom at home independently (public bathrooms are much more difficult) depending on her clothing and only needs help with certain wiping if you know what I mean. 


  1. Susan....
    "Being more of a creative type, I'm not so good with managing time. It has a way of getting away from me...." That is my problem!! Thank-you for figuring it out!! I just always blamed my Attention Deficit Disorder.... ;-D
    Good job, Ainsley!! You are such a bright, big girl!! Keep it up!! ;)

  2. That's totally awesome!!! I am so thrilled for you! 12 years. Wow. It's been 8 for me. Of course, Harlie's back in pull ups now. She always has to go back to them when she's got something GI related. She can't help it. Although she tries so hard.

    That necklace would be perfect for trick or treating!!! Not that Harlie eats the candy (I do that ;-)) So, thanks for the tip!

    So, congratulations Ainsley! And Susan! Way to go!!!


  3. Thanks for your comments Raelyn. It's great to hear from someone who is an adult and has been through some of the same things as Ainsley. Also wanted to say it's totally possible I have ADD. Maybe I should get diagnosed so I have a better excuse. ;)

  4. That's great news Susan. Keep up the good work.

  5. Susan....
    Here's the thing. I was never actually diagnosed with ADD!! ;)

  6. Especially when the diapers become adult sized, and your child grows...eh-hem...hair. Yes. I know. It's a shocking realization. adult diapers