July 25, 2011

Fragile X and Toilet Training

Here we go! We have decided to begin toilet training Grant. We've gathered all the supplies and I have read several special needs books. Today is the day. (Gulp!)

Toilet training is a big undertaking for any parent (and child) but having a child who has developmental delays, sensory issues, and motor planning difficulties heightens the challenge.

Challenge number one: Is Grant developmentally ready?

In November 2010 Grant was 26 months old but, through testing, was concluded to have an IQ of an 18 month old. Nine months have passed and I am hoping he has an IQ of at least a 22 to 24 month old. So, at this point, I am guessing that Grant is about a year behind developmentally. (His IQ will be tested again in September when we visit the Duke Fragile X Clinic.)

Challenge number two: What can Grant feel?

Because of his Sensory Processing Disorder (SPD), Grant struggles to feel the same sensations we do - or at least at the same level we do. A big piece of this training will be to teach him how to feel the need to use the toilet. Some of that comes with age and development and some of it can be taught. We're about to find out how much of it can be taught.

Challenge number three: First this, then that...

In addition to developmental delays and SPD, Grant struggles with motor planning. In other words, when Grant is given a task it can be difficult for him to break down the individual steps it takes to complete the task. This can be helped with repetition, verbal cues, social stories, and picture scheduling/sequencing.

Using the Bathroom

Washing Hands
Here are great examples of bathroom picture schedules. You can find these, along with others, at http://www.do2learn.com/.

We are being a bit aggressive in our timing but I am determined to keep our expectations high. There is a fine balance between expecting much of Grant and acknowledging his syndrome. While we accept Fragile X Syndrome will always be a big part of Grant life (a huge understatement), we refuse to limit our hopes and dreams for him. This may sound silly, but I believe toilet training is a great foundation for the many successes Grant will have.

I have no idea how long the process of toilet training will take - two weeks, two months, two years?!? I do know that we are going to take it one day at a time. And I'm sure we'll have some stories to share along the way. To be continued...

Any helpful tips? Please pass them on!


  1. Best of luck! I hope you have much success and little frustration. My only piece of advice is that it is good to give them information and opportunities, but when they are ready, they will do it. I was pulling my hair out trying to train my oldest daughter for almost 2 years, then out of the blue a month before her 4th birthday, she decided to stay dry all day AND all night. We switched her to underwear the next day and never looked back! We aren't anywhere near ready to train my son yet because I want to wait until he has the words for the functions, or at least is more communicative of his needs. I wish you all the luck in the world though!

  2. Hey Karen:) Devin wasn't potty trained till about after Chirstmas 2010.(he turned 3 in Sept 29 2010) We worked for a long time but he finally got it. Lots of praise is really good. For Devin he loves hi fives and claps and praise. He doens't have special needs but potty training in general is frustrating for us and them so just remember his time will come.
    I know it says anonymous but I didn't know what else to put for a profile??

  3. I tried unsuccessfully twice to potty train Gavin: when he was 27 months and when he was 30 months. I was SURE that he was ready because he was extremely interested, but he would do great for a several days, even a week, and then all of a sudden refuse to potty and start screaming when I tried to force it. He would wait until 5ish minutes off the potty and then let loose...all over the floor. I thought he was ready, but obviously he wasn't. Finally, at 34 months he seemed ready, I was ready, and it all clicked. By his 3rd b'day he was staying dry during sleeping as well. My nephew wasn't ready until closer to 4 years, but then it went smoothly for him as well.

    If it works for you right now, AWESOME!!! but if it doesn't, don't give up. Wait a couple months and then try again.

  4. Karen,

    I completely agree with those who say that Grant will train when he's ready. To some degree, I struggle with feeling things as I should (CP actually makes my bladder MORE spastic), and motor/movement difficulties too (obviously). I wasn't toilet trained until I was five. However, I think some of that was stubbornness and a definite fear of "losing control" of my body. I would wake up dry, and then sit on the potty until noon, and then scream bloody murder when I finally went. I, of course, don't remember any of this, but my mom recounts the story the same way every time.

    So all this is to say, if Grant is afraid, or if he does have motor and perception difficulties, he's not the first one. He WILL get it, but it may not necessarily be on your time table.

    Also, a word of caution: be very careful not push Grant too hard. I read your blog, and I applaud everything you're doing for your son, but at the same time, I want him to have a childhood. I don't really remember my childhood because of all the therapy and extra schooling, and I'm missing something because of that. You are more than likely doing just smashingly with Grant, but I grieve the loss of my childhood.

    Jill V.Z.

  5. Nicely compiled data. I have started reading this site. This is really worthy content and
    useful for every new language learner. Appreciation for this kind of important write-up!
    I got a completely fresh resource for Baby Potty Training and like to share with you all.
    Potty Training Problems


© Choosing Gratitude | All rights reserved.
Blog Layout Created by pipdig