Sunday, October 9, 2011

Oh Poop!

My autistic daughter who is almost 6 and not fully potty trained will at times play with, paint with, and/or eat her own feces.

There. I said it.
Is it embarrassing? Sure.
Is it sad? Extremely.
Why bring it up then? So that I can let it go.


Talking about autism openly and honestly was a vow that I made to myself, yet this one quirk has been the thing that I rarely, if ever talk about. It is too hard. Too painful. When I do talk about it, I find myself speaking in a hushed tone, and refusing to make eye contact. Quite honestly it is the only thing that Bianca does that will drop me. The tears will flow, the guilt sets in, and the rage re-enters my psyche. Not rage at Bianca, but rage at the situation and at the hand that I have been dealt. It makes me feel like I have failed my daughter. Nevermind that we have taken a million precautions to keep her safe, if it happens I take it as a personal failure.

It rarely happens anymore. We have figured out her “tells”, so we know what to look for. We have developed routines so that although Bianca can’t tell us that she has to go potty, her body is conditioned to go at certain times. We put her on the toilet at around 11:00 AM and 5:00 PM and that is when she usually goes poop. She appears to only want to go at home, so if we are out for a long period of time, we put her on the potty when she gets home and she usually goes. For the times that she does not go, we have developed a routine of putting Bianca in footy pajamas with the feet cut out, with the zipper in the back so she can’t undo the zipper. This will buy us time if she soils her diaper, but she will still on occasion try to reach through the pant leg and try to get into her diaper. 

The internal drive in her to play with her poop also seems to have lessened. Maybe that is from repeated scolding and explaining that it is not good or healthy. Maybe it is because she enjoys flushing the toilet a million times, more than she likes playing with her poop? Even though Bianca can’t converse, I believe she knows she shouldn’t do it, but I think the curiosity gets the best of her.

It isn’t like Bianca is running amok without supervision. We have 3 kids: a 5 year old, a 4 year old, and a 15 month old, so our attention gets diverted. We have our living room baby gated so the kids are pretty confined. The kitchen is right off of the living room, so when we make snacks we are right there. My wife and I usually work opposite schedules to cut down on babysitting costs, so for the better part of the day, the kids are with just one parent. The other thing is… Bianca is fast. She is like a bolt of lightning. She is also sneaky. So if we miss a “tell” that she has to go potty, she will go into a corner or behind furniture and do whatever she needs to do. Sometimes she will do it right in the open while sitting playing with toys or looking at books. She just reaches in and there you go. It happens quickly.

Luckily for us, Bianca’s sister who is only one year her junior is a huge help. She lets us know if Bianca is doing something she shouldn’t be. This too leads to guilt. Should a younger sister have to help protect her older sister from herself? There is no doubt that Sofie LOVES her big sister. When she goes with me to Bianca’s school or walks to the bus stop with me to greet Bianca when she comes home, Bianca is usually met with a shower of kisses and a chorus of “BIANCA!! BIANCA!! YOU’RE HOME! I MISSED YOU SOOOOOO MUCH! I LOVE YOU!” I just hope that she never loses that love and exuberance for her big sister. One of the biggest fears for anybody that has multiple children is that one sibling will resent the other. That fear is magnified 100 times when one of the kids has special needs.

The time has come for me to take the power away from this particular quirk. I don't want this to have control over me. I am over it. 

It isn’t like I love Bianca any less because she will play with her poop. I can honestly say that I don’t care what other people think about it… let me re-phrase that. I don’t care if people react NEGATIVELY to it. If my sharing this little slice of life in the land of Autism helps even one parent know that they are not alone, then I care a great deal.

Like anything in life there is good and bad in having a family affected by autism. I see too many people out there that try to paint it as all good or all bad. It is both. The trick is to not let the bad stuff break you. You have to be vigilant about putting the negative in its place.

The fulfilling thing that I have found is that the bad stuff makes the good stuff seem all that much better. So every time Bianca goes on the potty, it is cause for celebration. There have even been a few times in which Bianca has come to me, grabbed my arm, and dragged me to the bathroom. Those are moments that I cherish and consider HUGE victories.

Nowadays, I have way more moments to celebrate than I have to be upset about. For that I am extremely thankful. I am thankful for my family and the support they have shown us and the unconditional love that they show ALL of my kids. I am thankful to still have my marriage intact. I am thankful for whatever it was that triggered me to go from a guy who was perfectly content to wallow in his sorrow and despair, to a guy that will not rest until things are set right. I am thankful for the thousands of email, comments, tweets, and calls that I have received from people supporting me and my message.

However, at this moment, I am most thankful for finally being able to let this go.



If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.



To keep up to date with everying in Lou's Land, please subscribe to my blog. "Like" Lou's Land on Facebook and follow Lou's Land on Twitter

12 comments:

  1. Thank you so much for sharing this. I found your video a while ago through Diary of a Mom. I have watched it and shared it more times than I can count. It still brings me to tears. So close to home. My daughter is almost 4 and was diagnosed last November. Since then I feel like a whirl wind of change in my life, and a PHD in something I knew very little about. The need to try and do everything humanly possible to help my little girl. The triumph that are HUGE amazing victories and the bad day as and sleepless nights full of worry and questions and fear. I am there with you.
    I am proud to see you putting this out there and beginning to let it go. A LOT of kids on the spectrum do this. For me, it was one of those things that I said "Thank God my daughter doesn't do that!" Until of course, she did do it. Into er diaper and all over my white walls. I was horrified and hurt. I couldn't say she didn't do that any more. Thankfully though, for us so far, it ws an isolated incident about 2 months ago. It hasn't happened again. I hope it won't but at the same time, I know it very well may. She is not even close to being potty trained and I'm at a loss for where to even begin with it.
    So thank you for sharing this. And thank you for your video, and your perseverance and determination. I look forward to being a regular here in Lou Land.
    - Barb

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  2. HI :)
    Thanks so much for sharing your video and blog! I've only just discovered them and plan on reading back some more - but I applaud you for being so brave and honest! I'm a preschool teacher and worked with many Autistic children (varying degrees) and while it can be extremely hard work, it is also very rewarding to see progress. I can understand how full-on it would be to deal with on an every day/hour/minute basis.
    Louise

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  3. Yeah, for us it's the accidents. Especially accidents that occur when we think we SHOULD be safe. You know, we took the precautions, we know the tells, she just went. . . that sort of thing. And you're feeling like, "okay. . . yeah, i got this. . . " and then it hits.

    "Bianca is fast. She is like a bolt of lightning." I think this must be a spectrum thing. Lily is like a rattlesnake she's so quick.

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  4. Hi Lou- Just found you thanks to that shared YouTube video on FB. I'm an early childhood teacher who is relatively new to the land of special needs, but learning fast. I just wanted to say that I'm listening, and hearing you loud and clear.

    The 'bolt of lightning' strikes a chord with me, too- my first Aspergers-affected boy in my room was like that with everything, including finding a staple gun in the supposedly *childproof* drawer and firing it at his peers. (Thank God it was empty.) You feel terrible, and you do get blamed by people who don't get how hard it is when things happen that you weren't *fast* enough to catch. That much I fully understand. And so I'm here and I'm listening, because you can teach me to be better at this.

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  5. Wow, I have been following Lou's Land for a few months and I am so glad you posted this.
    It's nice to know I am not alone.
    The toughest part of potty training for me not being able so share my pride when my autism angels find success on the potty. When I talk to other parents of "typical" kids and they talk about their 9 year old boys and all the sports and activities they enjoy. I often want to tell them, "That sounds great, but MY son went the whole weekend with only a couple poop accidents"!
    My 9 year old rarely will have pee accidents, but number 2 is still an issue. We also see his "tells" and rush to the bathroom right away. It's amazing how excited we get when he finds poop success on the on the toilet.
    My 5 year old daughter has recently finished her potty training and it seems she is "getting it" a little quicker than my son did at her age.

    There. Now I said it.
    Is it embarrassing? Sure.
    Is it sad? Extremely.
    Why bring it up then? So that I can let it go. Thanks Lou

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  6. Lou, you and your family ROCK! I've worked in the developmental disabilities field in many capacities over the last 35 years, blessed by many friendships with individuals and families whose lives are touched by ASD. And now that includes my beautiful 3 year old grandson. Saw your video and have reposted it on fb, and shared it with my daughter.
    I know the poop thing disturbs people. But it's just poop.
    Cheering for your efforts to enlighten us all!

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  7. It's great to let it go,and thanks for sharing it! We are down on smaller accidents-generally, my boy is toilet-trained, for about a year now (since 3and half), but accidents still happen sometimes. Both number one and number two. It makes me feel guilty because then I think that it's my fault for not seeing it on time.
    You have made it easierfor me to accept these accidents with this particular post.
    Also,bolt of lightning-don't I know it!
    Looking forward to reading you next time!

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  8. Hi Lou - I feel as we are walking in your footsteps (or vice versa :-) - Our little girl, who also has Autism and is non-verbal has these accidents frequently and yes its hard to admit that one of her 'stims' is to play with her poop. They are usually the incidents that bring me undone..... thank you for sharing your journey, it brings me much needed strength, and your video is just so spot on. Thank you

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  9. Thanks for sharing! I have to tell you, my niece, who is now 3, is not potty trained completely, and is a "typical" child, has done this one a few times.
    It is so hard to understand WHY in the world would they want to play with poop, or even put it close to their mouths! Ugh!
    Wishing you luck that it's a habit or curiosity that will pass shortly!

    My son is autistic but is only 2, he is just starting to figure out how to get his diaper off now, and I am not looking forward to the day that I might find his 'stinky artwork'

    <3

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  10. Hello, I feel as if you are walking right behind me in my foot steps as I have a son with Autism who is now 8. I have been where you are now with the whole potty thing. I wanted to share with you what worked for my son! First I set aside an entire week where we could just stay home. The week prior I did all my shopping stocked the kitchen and bought plastic eggs and filled them with suprises such as; rubber balls, stickers, m&m's etc... anything that your child will love! The first day we woke up, I covered all the carpet in my house up with blankets/sheets/towels just in case, then I took off that diaper and let my son run around the house completely naked. Our first accident, when I cleaned it up I had my son watch and help with what he could and I took it and him to the bathroom and put it down the toilet to show him where it went (not the garbage). I took him to the bathroom every 20 minutes saying potty and having him repeat it before you go and during every time. We would stay in the bathroom for 3 to 5 min. at a time to try if he went any at all I made a huge deal over it and gave him one of the suprise eggs! Then I would wait a little longer before I took him back. The next day we started out the same then I put a shirt on him, then underware, left it like that for the rest of the day. Day 3 we start out the same way we ended on day 2 shirt and underware and I added pants just before lunch. Much to my own suprise it worked we never had another accident and he was potty trained we were out of the house on day 4! He need to see it happen and where it went a lot of children on the spectrum are very visual and concrete as I am sure you already know. I did have to stay on top of him asking him all the time and having him go potty before we left the house to go anywhere and again when we arrived where we were going I made it a routine! I hope this helps you & works as Great as it did for us!!
    Norma

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  11. WOw! again...thank you for sharing...I would like to respond to what you said about Sofie..about how much she loves Bianca and is there for her..I belive like our little Sophia that she chose to be there.. SHe knew what she was doing when GOd put her here and she is her little angel guardian...and what an angel little sister...We have a Sophia too...She's almost 5 and her big brother Holden is 7..SHe is his big/little helper & my little helper.. I am constantly thanking her for all she does to help him and really lifting her up as well as telling Holden what a super genius he is..Sophia knows how special she is and what a special job she has in helping her brother...They're a good team and I am so blessed they chose me to be their mom.. WHat great lessons they teach me daily.. :) KNow that your Sofie knows what an amazing little angel sister she is and how big her love is for Bianca..You and your wife are doing and amazing job Lou.. <3 thank you.. :)

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  12. The video brought tears to my eyes. Thank you for making it, it says so much for all of us dealing with the issues everyone loves to ignore.

    My autistic son is 9 and BM's are still an issue, he hates the bathroom(its to boring or scary or whatever reason that pops into his head to avoid going in there for more then a pee). I've about thrown in the towel on it and I just invest in a lot of underwear,laundry detergent and body soap(cause he has to take a shower after every "accident"). He knows enough to put the nasty underwear in a special bucket in the bathroom but won't sit on the toilet to go. Makes me wanna bang my head against a wall.

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