This is a copy of an e-mail I sent to a local Down syndrome parent support group I belong to and I thought it was worth saving here:
Someone just sent me a note and asked some questions about potty training Hayden (remember, I'm giving away FREE diapers and clothes--so please contact me if you need either!!) and I thought I'd talk about it here on the forum because it's always a timely subject. Or, put another way, I've read HUNDREDS of potty-training posts and I'm thrilled to FINALLY be able to contribute to the subject!! I'll try to keep it simple and succinct but this has been 12 years in coming, so I make no guarantees this won't turn into "War And Peace"!
First off I'll admit I'm probably at least 6months to a year behind in this whole toilet-training issue. Meaning; we started this the first of June of this year when really I could have probably started it easily last Christmas or even last summer. But that's okay, it is what it is and it's definitely NOT a race.
If I could say that there's a "key" to this process it would be that YOU, the parent, have to first and foremost NOTICE and pay attention to your child's rhythms about eliminating, which is why I say we could have started months earlier because Hayden's always been very regular about what and when he eliminates.
First, some things to know about Hayden:
*he is nonverbal
*he was not (is not) able to tell me when he needs to go potty
*he did not (does not) have the muscle sensations and cues as to when his bladder is full or when his intestines are full and so he couldn't tell me
*he has huge global delays way beyond T21 due to an infant seizure disorder and is roughly developmentally anywhere between 2-3.5 years (cognition/social/emotional) (I explain that not to justify why he was so old at the time we embarked on potty training, but to give you an idea of where he was at devcelopmentally......YOU know your child!! Apologize to NO ONE!!)
*he never minded wet/messy diapers and never once came to me and indicated any displeasure about those things
So, after months of ME taking note on when things were happening I took the plunge. (Well actually, I told my best friend who's daughter is now 11 and has been 99% potty trained (day/night) for the past couple of years about noticing Hayden's rhythms and she said we were beyond ready and I needed to just go for it). So that was the first piece of my mental state--I needed to be reassured that I was indeed ready to do this. The second part is that I had to take COMPLETE ownership of the entire project. Not that I couldn't have relied on my husband or asked him for help, but I had to own it. I wasn't going to give myself the out of whining or complaining if my husband didn't buy into the program from the get-go. I was going to take full responsibility for this no matter what. (I believe very strongly that that's a key to success here).
The other SUPER-DUPER important element to this process is that you MUST give YOURSELF and YOUR schedule over to this. Your life BECOMES taking your child to the potty and staying there for however long until something comes out of that little body. No appointments, NO errands, no housecleaning. I'm not saying that these things WON'T get done, I'm saying that you have to get these things out of your brain as things that NEED to be done. The first few days w/ Hayden were tough; he had been trained for YEARS and YEARS and YEARS and his neuro-pathways were set that he went to the bathroom in one location and that he could do it whenever he wanted. Now I was taking his body to a different room and sitting him on a potty (I bought a special seat-thing from a medical supply on-line store for older kids because all the other things at the regular stores are for tiny bottoms) and telling him that THIS is the new place to let it all go. He wasn't HAPPY and more importantly like I said just now, it was DIFFERENT and it felt different neurologically and physically, so of course there was resistance. Which is why "owning the process" not allowing failure to be an option is KEY here. I can't stress that enough. We spent the first few days IN THE BATHROOM. If there was a drop of pee in me, I would go first because I knew I was going to be in there for awhile w/ him. I brought in my iPhone and played scrabble in between giving him encouragement (I mean really how much can one person stand of their mother talking at them--I had to give him a break every few minutes!).
So from day one, first thing in the morning after waking up, we took ALL of Hayden's diapers out his bedroom and out of the bathrooms. I had him walk with me to the alley where we left them for the garbage man. He looked a little concerned at this point (I later retrieved them and put them in the garage to hold them for giving away) and then we went to the bathroom. He did NOT want to go on the potty. This was NOT RIGHT but with lots of encouragement and happy, happy faces from me and when he coudln't hold it another minute, he finally let loose. This took A LONG TIME (like 20 minutes I think). This was SCARY for him and think it's important to note. We have to reassure our kids that they're doing a GREAT thing and that it's OKAY to potty in a place other than their diaper. This took many, many times on the potty to reassure him that it was okay. At first he would yell and cry somewhat because he was that uncomfortable. He would grab my hands and put them around his waist for reassurance. So wherever your kid is at emotionally, understand that this is a brand new ball of wax for them and they may have strong reactions.
HUGE KEY for Hayden: REWARDS. Hayden, although born deaf, is completely WIRED for music, so his rewards (especially at the beginning) has been being able to watch music after going potty. Day or night. Get up in the morning and go potty: get to watch a taped show of Andrea Bocelli/James Taylor/Lawrence Welk---whatever!!, just so that we firmly established in HIS mind/heart that he was instantly rewarded for going to the bathroom.
So after getting the first potty of the day done, it was breakfast time and after breakfast clean-up (in which Hayden actively participates--another key to potty training success I believe is having your child participate in ALL family rituals and activities so they know they contribute in ALL areas--yes, even going to the bathroom!!). I would give him maybe a ten minute completely supervised break (at this point he wasn't allowed to go out and play at the kiddie pool anymore because that had been a favorite place for him to play with the sparkly water and then let his bladder go). After ten minutes it was back to the potty. Remember, I knew Hayden's rhythms and the key there was that at mid-morning he would have a B.M. I would have him sit at least 15 minutes to see if anything would come out. If nothing happened, another ten minute break, completely supervised and then back to the potty.
Defnition of "completely supervised": Hayden and I either sitting on the couch together or at the table doing an activity where I was watching EVERY subtle nuance of his body/muscles and facial expressions. Any different kind of movement on his part or if he suddenly got up and started walking around and we were off to the bathroom.
I started this whole thing talking about ME (it really is all about me!!) and it actually does end with ME (or you). Although Hayden now goes to the potty only in the bathroom he is still not "potty trained" in what "normal" people think of being potty trained. He is not in control of his bladder/bowels and cannot tell me when he needs to go. We are on a SCHEDULE which serves a really important purpose of training his insides when to go and it's laying down that new neuro-pathway of WHERE to go. Have we had "accidents"? Yep, when I've been distracted and haven't taken him to the potty. He still does not recognize the sensations strong enough to cue me....and that's okay, we'll get there. When the accidents happen I make a big deal of saying "Ooops, we only go to the potty in the bathroom" and I take him right there. I NEVER, EVER scold him for it. EVER. It's always in a firm, but upbeat voice of "this is where we go" and even if he's just had an accident I make him sit on the potty anyway to reaffirm that that is the ONLY location to go potty. We also celebrate EVERY victory at the potty. EVERYTIME. Hayden is deaf, so he's ALL ABOUT facial expressions and I put on a show for him EVERYTIME he has success. If having complete control over your bladder/bowels is like a big rock being dumped into the water, we are still in the first ripple of that kerplunk....it's going to take awhile, but he will get there.
So, to summarize in bullet points:
*Notice your child's rhythms (including facial expressions, tummy muscle contractions) at key points thorughout the day
*YOU own the potty training experience from top to bottom and inside and out. It's great if your family can pitch in, but do NOT expect anyone to help (and this is not done w/ a martyr attitude at all, it's very matter-of-fact and just owning your own stuff)
*Get rid of ALL DIAPERS immediately so your child knows and YOU know there's no turning back (at least so they see you getting rid of all diaper supplies)
*Give up your schedule and STAY HOME (this means "getting things done"--inlcuding running errands. Yes, including the grocery store and Costco. Yes, I know this is HUGE. I've lived it!! Please call me and scream/complain and whine ANYtime!!---I completely understand the angst). Your other children can meet with you about their pressing concerns while you're in the bathroom or they can wait outside (even little ones can wait a minute or two--it's good practice!)
*Have a meaningful reward that can be given immediately after success
*Do not let them leave the bathroom, especially the first 5-10 times, without success. Come back within ten minutes if nothing happens after 15 minutes so they can experience success (remember this about developing a new neuro-pathway for THEM)
*Stick to a schedule (neuro-pathway thing again)
*Go to the potty WHEREVER you are in public (that's why God made hand sanitizer/toilet seat covers--buy some and take them with you if you have to). Whatever YOUR issues are w/ public restrooms, do NOT pass them along to your child because they HAVE to be able to go potty WHEREVER they are out there in the world when they're older (neuro-pathway thing again). Make every place "okay" to go potty--no "home field" stuff like my husband jokes about!!!
Hope this helps!! Anyone can call me ANYTIME and ask anything!! I'll do my best to help YOU through this! Our kids will be FINE! They can ALL learn how to do this, no matter what they're challenges are...we just have to clear our agendas to help them be successful!!