Monday, May 7, 2012

Potty Train Wreck

Prior to boarding the train, I had read countless articles and had sought the advice of several experts.  Others, who had gone before me, had warned that the trip can be long and difficult.  I hoped my preparations would make it as painless as possible and a positive experience for us all.  I would soon learn that sometimes no amount of planning can prepare you for the road ahead.  Our journey would have more stops and detours and breakdowns than I could have imagined.  Thank goodness I didn’t have a crystal ball when we started, or else I don’t know that I would have been able to face the challenges ahead. 

I could write a "War and Peace" sized book on the topic of toileting…most of it would be about war, but thank goodness I have almost found peace.  I won’t give you a mile by mile replay, instead, here are some postcards received while riding the rails.
 
Dear Mom:
I love you, but why are you suddenly interested in me using the toilet?  The diapers work just fine.  I pee and poop in them and you change me.  I see no reason to make changes to our arrangement. 
Love,
Noah (age 3 ½)


Dear Mom:
I thought I made it clear to you that I do not like changes.  Setting timers every hour seriously interrupts my play and makes me very angry. 
BTW: I know there’s no potty fairy changing the color of the toilet water.  It’s just you trying to come up with a creative way to get me to walk into the bathroom.  There’s nothing magical about putting blue food coloring in the toilet bowl and having me pee to change the color of the water.  There is only science.
Also, I’m sorry I threw my shoes in the toilet and locked you in the basement, but I’m trying to get it through your head… I despise changes to my routine.
Love,
Noah (age 3 ¾)
P.S.  I only like Thomas the Tank Engine trains. Please keep your potty trains to yourself.

 
 Dear Mom:
Please stop talking about treasure chests and stickers.  I don’t like stickers! 
And, Diego underwear is grossly over-rated.  Luvs are much more convenient and more absorbent than cotton. 
Can’t you find a better use of your time then to torment me with timers and your irritating potty songs?   I guess you enjoy cleaning up the floor every 30 minutes.  

Love,
Noah (age 4)P.S. Did you like the Irish jig I did in the puddles today?


Dear Mom:

I had a great time at Grandma’s house.  Since I don’t get to see her often, I haven’t had a chance to create a routine at her house, but I still had fun. 
I played outside in her garden and she let me eat chocolate chip cookies for breakfast.  I peed in her potty, but when I come home on Sunday do not expect me to use your potty.  I don’t do that at home. Home = Diapers

Love,
Noah (age 4 ¼ years)


Dear Mom:
Why do you insist on reading me a story featuring photos of me using the toilet?  And, now Dad is creating a video of me and the potty?  Hello! I know how to use the toilet, but oftentimes I don’t feel like I have to go. 

Remember when I was two and you found me purposefully slamming my fingers in the door…again and again.  Well, it’s kinda like that.  I don’t feel things the same way you do.


I’m not doing it on purpose – ok, well, not all the time anyway.  I’ll admit, sometimes I just don’t want to go because I just went 30 minutes ago.  Why do I have to go all the time?  It’s so frustrating!

Love,
Noah (age 4 ½ years)


Dear Mom:
I know my birthday is just around the corner.  I’m excited for my party and presents, but I don’t want to be five.  I finally got used to telling people that I’m four, and now I have to remember a new number.   Stop telling me I’m getting to be a big boy.  I don’t want to be big.  I just want to stay little. 

Love,

Noah (age 4 ¾ years)P.S. I’ve noticed when I sit on your lap, that there isn’t as much room as there used to be.  Are you shrinking?


Dear Mom:
Yesterday the kids at school made fun of me on the playground.  They called me diaper boy.  That made me mad.  I wasn’t even wearing diapers…I was wearing a pull-up.  Sheesh!

Love,
Noah (age 5 years)


Dear Mom:
I’m so frustrated…I know you are, too.  I go to the bathroom all the time at school.  I have a routine.  I always go before reading and after math and before lunch and after recess.  Maybe I would have fewer accidents at home if you would teach reading and math to me on the weekends.  I always go before reading and after math.

Love,
Noah (age 5 ½ years)


Dear Mom:
Thanks for taking me to see a specialist.  I know we are both super tired of living our lives around the bathroom.  At least now we have a name for what has been aggravating the issue -- Lower urinary tract dysfunction.  I’m not sure what it means, but I hear the physical therapist I’ll be seeing uses video games to help.  I love video games!  I wonder if she has Star Wars the Complete Saga.

Love,
Noah (age 6 ½)


Dear Mom:
Wow!  The appointment with the physical therapist was kinda weird, but also kinda cool.  She attached special cords to my body that were then hooked up to a computer.  I had to pay attention to my breathing and had to squeeze or release my muscles just right to get the video games to work properly.

Love,
Noah (age 6 ¾) P.S. Thanks for not giving up, but Star Wars games are much more fun.


Dear Mom:
I like the new vibrating potty watch you bought for me.  It looks like something a spy would wear.  It’s great because now I never need to pay attention to external cues like when a class begins or ends – I just go when the watch tells me. 

You are no longer the boss of me…the watch is!  But, don’t ask me to go before getting in the car for a long ride.  I can only go when my super cool watch tells me to go.
Love,

Noah (age 8 years)
 
Although our story is not unique, it was made more complicated by the physical issues we discovered late in the game.  Unbeknownst to us, Noah suffered through muscle spasms and his frequent leaks were due to his inability to fully empty his bladder or hold more than two ounces of fluid at one time.  In our case, the specialists believe that when we began toileting, Noah had very weak muscles which caused frequent accidents, however, later he developed a routine of holding his muscles too tightly which caused the spasms, and an inability to empty.  Today, we  have rid ourselves of all devices and use a combination of frequent, routine bathroom breaks and medication to keep his confidence strong and healthy.

I hope you have found the information I’ve presented as meaningful and that it helps provide a greater sense of compassion for families who are going through it, but are too embarrassed to share their story.  In closing, I want to leave you with three points to consider:
1.       One trait commonly shared among children on the autism spectrum is a high level of anxiety.
2.       Controlling one’s environment is a self-coping means to reduce anxiety.
3.       There are really only 3 things a child has control over –
a.       Eating – how much and what they choose to put in their mouth
b.      Sleeping - how much or when they choose to fall asleep
c.       Toileting – where or how often they choose to void

Below are some good resources:
http://autism.lovetoknow.com/Toileting_Issues_with_Autism
http://raisingchildren.net.au/articles/autism_spectrum_disorder_toilet_training.html/context/1167
http://www.behavioradvisor.com/Autism&Toileting.html

7 comments:

  1. Andrea, this is such a creative way of presenting a long and unbelievable journey--really great information, and great writing approach!

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  2. My son wrote that same 3 1/2 year old letter to me over and over. I kept marking it "Return to Sender" until you came along and shared your story. I can never thank you enough for giving me "permission" to relax and let it be his decision.
    Keep blogging!

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  3. Thanks for sharing this Andrea. You are amazing!

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  4. YES! This is so incredibly helpful and your writing style makes it incredibly adorable at the same time! You ARE amazing and keep on chuggin'!!!!

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  5. Wow!! What a bumpy road you guys have been down. I can't imagine that frustration for SO long! You sound so positive about it! Thank you for sharing this post with me. It's great to hear other people's perspectives!

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    1. It was quite a ride...I hope never to travel down that path again. If ever you need help with potty training...I have a gazillion ideas for you to try. Good luck!

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