Wednesday, March 16, 2011

Potty Training My Non-Verbal Autistic Daughter

The following is the first guest post on this blog. It is written by an incredible young woman named Natalie Aguirre. She is the parent of seven children, four of whom deal with varying degrees of autism spectrum disorder. This is her story about potty training her daughter Elaina. It is an amazing read of strength, determination and tremendous patience. Natalie will also be our guest along with Elaina's teacher, Toni Lyn Vidro, on Sunday night at 9pm on The Coffee Klatch's blogtalk radio show.  Please join us for this very interesting and enlightening conversation.

Until next time,


Elise

   

       When I decided that I wanted to try to potty train my daughter Elaina the first place I thought to look for advice and support was online.  I googled it, the same way we find just about anything on the Internet.  Well, I could not find anything that I could apply to my daughter.  Elaina is completely non-verbal and functions at the level of a 6-12 month old baby, even though she was almost 5 when I desired to attempt potty training her.  I found so many articles on potty training autistic children but they were so irrelevant to my child.  Some suggestions were use rewards, draw out charts, use sensory tactile toys to keep them on the toilet.  Well, if I use candy for a reward my daughter will simply arch her back, scream on the top of her lungs, and throw herself to the floor hitting and flaring her body in contortionist positions until she received her candy or until she ran out of the bathroom.  If I draw out a chart my daughter would simply destroy it and not understand the smallest bit of it.  Give her toys while she is on the potty, good idea, except she only drops them in the toilet almost as if to say “go fishing Mommy”.  So I posted comments about trying to potty train her on my facebook page and found out that most parents of severely autistic children who were on my friend's list did not have their children potty trained.  Some were trying and others had all together given up as the crap smearing finger painting was to emotionally overwhelming and unbearable to handle.  This I can relate to and fully understand. 

    There were little subtle signs that my daughter might have the potential to potty train which if they were not there I may not have had the determination myself to potty train her.  Around the age of 4 and a half she started to bring me her diaper from the bag of diapers I always had lying around.  She wanted to be changed.  She constantly pulled poo from her diaper and finger painted.   She started to remove the diaper when she soiled and then finger paint.  One day which really set in my mind the fact that I had absolutely no choice but to follow through with potty training her, I saw her take a wipe and start to wipe her own bottom because I had refused to do it since she was not soiled.  I suppose something was irritating her down there and she wanted it clean!  But I searched and searched for some advice and I was hopeless when I found nothing that was close to relevant. 

    On top of desiring to potty train my daughter I was in the middle of a large dragging battle with the school to hire a teacher with autism experience and to make an autism classroom at my children's local elementary school.  Well, I received a phone call over the summer break from a lovely sounding woman, Toni Lynn Vidro, who was to be Elaina's new teacher.  Toni had more experience then I could ever have imagined and she gave me a wonderful feeling just speaking to her for perhaps an hour.  I discussed my desire to get my daughter potty trained.  I also told her that this was my last time negotiating with the local school district, if they did not follow my wishes for my daughter and fully attempt to assist me in potty training I was going all the way to court next time and have my daughter placed in a private school for autistic children.  Toni assured me that when Elaina started in September, after a couple weeks time to get adjusted, she would start a potty training routine for Elaina.  Little did she know that the school was not going to be thrilled about it. 

    Well, since I was having complete failure at home I decided to wait until school started back up in September and work with Toni to start a routine for toileting with someone who perhaps had more experience then me.  We discussed for hours how to approach Elaina.  I told Toni that when Elaina takes her diaper off she can go hours without bringing me a fresh diaper so Elaina has outstanding control of both urine and stool.  One of my biggest issues was the timer that so many professionals swear by.  Most special ed teachers start out taking the child to the bathroom every 15 minutes or 30 minutes, and having them sit for 15 minutes.  That would be ridiculous for a child who only urinates once every several hours and stools once a day!  When I tried the timer system I was overwhelmed with how much time I had to spend in the bathroom trying to keep my daughter on the toilet and she was fighting me the whole entire time.  I also had 5 other children at the time, including and infant and 3 other autistic children and I could not be in the bathroom all day!  Not to mention, the worst part of the timer system for a severely autistic child is they lose the focus and point of what the bathroom is supposed to be for.  I believe they start to relate to the bathroom as “oh the room I get Doritos on the toilet” or “the room I get to splash in the sink with my sensory toy”.  I believe that when they get the wrong impression of why they are really in the bathroom we are actually backtracking and not making progress. 

    So what would be more perfect then for us to have some sort of idea of when Elaina actually had to pee or poo.  Well, she takes her diapers off when she is soiled and I leave the bag of diapers out in my living room fully opened so that she can easily grab herself one to bring to me when she wants to put one on.  Of course, she did NOT always do this, it was random at best but becoming more consistent.  And yes, I was certainly still cleaning up my fair share of pee and poo from different areas of my home.  But we have a sign, as small as it may be.  We have what we needed!  Her signal and the only way that she ever let on that she may have a full bladder, was that she would grab a diaper from the open bag.  This is not a small revelation, this is huge.  I cannot tell you what figuring this out meant, this meant we had a way of actually knowing when she had the urge to relieve herself!  I requested that the teacher also have a diaper out on Elaina's desk when she was in school so that she could hand it to the teacher as the signal of needing to use the restroom.  Toni thought it was a great idea.

    Even when we had this all figured out.  We had our fancy communication potty training journal and we knew how we could tell when Elaina needed to go you would've thought we were going to hit the ground running!  We were going to take off and it would be a piece of cake, right?  WRONG.  I seriously underestimated the complete stubborn will of a severely autistic child.  I will tell you honestly, I never thought I would meet my match when it came to stubborn women!  But Elaina took her toll on me, on all of us.  I took her diapers off, refused to ever put one on her again.  She refused to ever let a single drop of urine or stool fall into that toilet.  We were butting heads hard.  We were in a match like no other, and even though I hated how unhappy my daughter was I knew in my heart this was what was best for her.  No one deserves a life in diapers if it can be avoided.  Elaina would get a diaper from the bag and I would take her to the toilet.  She would scream at me and yell and cry to be let out of the bathroom and eventually I would cave.  Then she would bring me a diaper again and I would take her back to the toilet.  It was a nonstop nightmare and it would go on for hours.  The worst was when she had to go so bad but flat out refused to sit on the toilet and she would squeeze her legs together to try to hold it until she would have an accident right in front of the toilet.  I felt like, “she just won't get it in the toilet because she knows that's what I want her to do and she just wants her diapers back”  She could not handle or comprehend why she could not just stick to her routine of her safe, soft, warm diapers.

    The same thing was happening at school.  She was grabbing her diaper and wanting the teacher to put it on her.  She was taken to the bathroom.  She refused to use the toilet.  The teacher always gave her Doritos to try to calm her down.  She would sit and sit on the toilet but refuse to go.  We constantly wondered how she could have such control.  She would strain and strain to not let it go in the toilet.  The school nurse was being called to clean the mess and clean my daughter if she did poo in her clothes.  The school nurse was not happy about this at all.

    There was another meeting just after Christmas.  And yes, I mean just after Christmas, as in January, this struggle was still going on!  My daughter was approaching 5 and a half years of age now.  The school brought in the autism consultant who in fact looked younger then my 27 year old self and did not receive the time of day from me.  The school nurse was also present.  I had been snippy with the school nurse on several occasions when it concerned my autistic children but this meeting would be my worst case of snippyness with her.  Toni, as always, would behave incredibly diplomatic, but always has the best interest of my daughter at heart.   The school nurse complained again about the sanitation of the classroom, with my daughter having no success with the toilet and urine seeping into the carpet.  I had heard this complaint numerous times and wanted to make sure that it was the last time.  I responded coldly and basically told her that Elaina is a severely disabled child, that this is the medical care that she requires, and that since the school does not want to pay the tuition on a private school for her it was up to the school to provide her with everything that she needs, including cleaning up any and all accidents my daughter has, and if they do not want to do their job without burdening me with constant complaints they could send her to a private facility.  Also, I finished up my rant with a comment that no classroom I had ever stepped foot in had a stinking carpet so maybe they need to invest in some new flooring.  She perhaps left that meeting with hurt feelings,and I like the school nurse a lot so being so cold towards her is not always easy for me, but I wonder if she new how much she was hurting my feelings by referring to my daughter as unsanitary.  Or how making complaints about the toileting could have actually deterred me from toilet training her and really negatively impacted Elaina.  

    Well, the school nurse was not the only person who did not agree with my determination, I was constantly reminded at home.  Elaina would come home from school at 2:30 and it would start at home.  I was pregnant again and very exhausted.  My wonderful husband did not have any support for me when it came to potty training Elaina.  He thought the house smelled disgusting no matter how much I cleaned out the carpets, and he did not believe that Elaina would ever potty train.  He constantly fought with me to put her back in diapers.  Elaina's preschool disabled teachers had told me the same thing.  “Elaina could not be potty trained.”  And then came a big blow when I was called back into the school in late February to discuss a report that the “autism consultant” had written about the potty training in regards to my daughter.  The autism consultant felt we were going about it completely improperly and that Elaina was being hurt because she was holding her urine and stool in for long periods of time.  I should put her back in diapers!  Could you imagine?  All these months just thrown away?  Tossed in the trash just to have to one day start over.  I told the teacher, principle, and superintendent there was no chance of me putting her back in diapers, I would sooner pull her out of the school, and that no one has ever 'hurt' Elaina.  Elaina is hurting herself, which she does constantly by scratching and throwing herself around.  Should I stop potty training Elaina just because Elaina is hurting herself by holding in her urine and stool?  Absolutely not!  That would be as senseless as rewarding her every time she took a bite out of someone!  Perhaps next time she digs her nails into my hip or takes a bite out of my thigh I will give her a damn snickers bar!  Seriously.  As I said before, first impressions are sometimes right on.  Under-experienced, good for nothing, way to young for your job, autism consultant! 

    Everything was stacked against her.  Except her mommy and one teacher.  Oh Lord, I think if it had not been for Toni I may not be typing this tonight.  And none of the staff at school new that I was struggling with my husband throughout this process.  I would never give them the satisfaction of knowing that someone agreed with their ignorance.  Would Elaina ever quit fighting, relax, and just relieve herself and all of us on the toilet?

    One Monday morning in the first week of March I was bathing Elaina alone as I usually do because she loved to pee in the bathtub, not in the toilet I just sat her on, so I won't put the other girls in there with her.  I washed her up and dressed her.  Feed her, brushed her, finished up her journal stuff and sent her and her 4 other brothers and sisters off to school.  I expected to have pretty much the same Monday I always had.  Nothing special, nothing different.  Elaina came home at 2:30 that day, like always and the van driver, who is a friend, says to me “did you notice that Elaina is in the same pants she left the house in?”  No way, no way.  I could not even begin to put it together.  Had Elaina actually used the toilet?  No way.  I can't believe it.  All this hard work I have been doing I could not even believe it.  So, I took her in the house celebrating and applauding her and I read her journal.  She had peed on the potty!! One time and she had not gone again since.  I was secretly thrilled but then I actually decided that I would not think about it anymore.  I could not bring myself to get my hopes up, what if it was just a fluke?  I just can't do that to myself.  So I took her to the bathroom.  She was not successful.  I waited for her to bring me a diaper,  she didn't.  She snuck into private areas of the house and had accidents all night.  Good thing I did not get my hopes up.

    Wait a minute, Tuesday morning I was going into school to talk to the superintendent, who is a great guy, for something, to be honest I don't really remember what it was.  He asked me 'did you hear about the party in Toni's class?'  I responded 'no'.  He said, “ they did not tell you that Elaina used the toilet yesterday?”  I said, “ oh of course,” he did not realize that I detached myself so far from the one success on the toilet because I did not want to be disappointed that I had actually forgotten.  Not to mention being pregnant, having a half dozen kids, things slip right out of my brain.  I told him this much.  He then informed me that she used the toilet again this morning and my heart skipped a beat.  One time, a fluke, but two times in consecutive days with a nonverbal autistic child who would not ever break her routine.  Do you actually know what that means!   She has got it!  She is potty trained at school.  I don't know why she did it at school first, I sometimes think she just had to give me a little sting for putting her through so much with potty training, but who cares!  Elaina is toileting!  This is a Hallelujah, drop to your knees, praise Jesus and praise your child moment.  This is total relief, and satisfaction.  The most rewarding feeling you can have at being the absolute best mother you can be moment.  The greatest gift to a parent is the success of your child.  I spoke to Toni and it was true.  Toni knew it was not a fluke.  This confirmed the feeling of success.

    When she came home that day I was determined that she would carry it over to home.  She was determined not to.  Well, when she brought me a diaper for the first time we went to the toilet and we sat there and she made her noise and tried to get up but you know what, in just a short amount of time she released.  She urinated in the toilet at home.  She did it and we celebrated.  We rubbed it in Daddy's face, (not the urine just the fact that he was wrong!) we partied and praised her.  We blasted music and she rocked along with the music, stark naked, just the way she prefers to be.  

    Of course, she still has accidents.  It was difficult to leave the house for a very long time because she would still urinate in her pants.  But once we started to have success on the toilet she started to take off.  As hard as it was to just get her to use the toilet, she started to be able to do other things to build onto her toilet training.  Eventually, she started entering the bathroom herself when she needed to go.  She started to turn the light on herself.  She started to attempt to get her own pants down, sometimes she still requires assistance.  She actually tries to wipe herself, but still needs some backup on those number 2s.  All of these extra skills that she acquired secondary to the toilet training were just icing on the cake! 

    I actually have another nonverbal autistic daughter who is similar in her lack of communication to Elaina, but different in many ways.  Her name is Eva and she is 4 and a half.  About a month ago Toni convinced me to try to toilet train her.  I thought Eva was too young and she did not show me diapers or any signs of needing to use the bathroom but I agreed.  Eva is easy going and generally has a more pleasant disposition then Elaina.  She has not been very aggressive towards others but will abuse herself if she is upset enough.  So, I agreed to remove Eva's diapers, though I was not sure how Eva was going to do.  And unbelievably we started to have success with Eva in the first 2 weeks of potty training.  Eva is almost 100% potty trained and she is a severe nonverbal autistic.  I believe that the fact  Toni and I are a fabulous team is why we saw such tremendous success.  We work together and have good communication.  She is so dedicated to my daughters.  It takes a team to succeed with autistic children.  Both sides have to be determined to give everything they have to these children.  If one half is weak, the child cannot be expected to succeed and it is unfair to these wonderful autistic children.  If you do not have this type of relationship with your child's teacher I would suggest requesting a meeting to discuss the lack of open communication and dedication that you are getting from your child's teacher.  This relationship I have with my daughters' teacher and also with their aid is the reason why my daughters' are doing so well.  But also, my biggest fear as a parent was sending my beautiful daughters who cannot communicate with me out into the world.  Having these two women, who I completely trust to take care of my girls when I am not has given me the feeling of safety.  Being an anxious overprotective mother, having a place where I feel my children are safe has been so beneficial for my mental health.  Another reason I am so thankful for these two wonderful ladies.

    So, why go thorough all I did with Elaina?  Why not just leave her in diapers?  Well, I have loved her from the moment she was conceived.  That is not accurate.  I have loved her from the moment my husband and I talked about becoming pregnant again.  I had cherished and worshiped the idea of my first daughter for a very long time.  I had her name picked out while I was pregnant with our sons who came before her.  I pushed her into this world and I smelled her, touched her, breathed her.  Her milky skin, her perfect face.  Her chocolate eyes, and her brown hair.  Her surprisingly odd sounding cry, her milk allergy.  I have so many dreams for her life and I can honestly say that I still do.  But I have different dreams for her.  I have dreams that she may be able to grocery shop with me as an adult, and brush her own hair.  I dream that I will be able to call her name and she will come running.  I     envision her going to autism camps, which you cannot do in diapers, and swimming amongst the autistic adults having the time of her life.  I see her using a device to be able to talk to me!  I don't care how she speaks to me I just want to hear her.  I even dream that one day she will say mommy and it will be the most beautiful word in the world no matter how forced it sounds.  I love her and respect her life as much as any parent has ever loved their child.  I want her to have every opportunity I could afford her.  I continued to have children even though I knew of Elaina's autism because Elaina is perfect in our eyes.  I would've changed her diapers until the day I died if that is what I had to do for her, but how awesome is it that she won't need that? 

    Still, she cannot communicate with me and either can Eva.  They sleep in a custom made safe room because they wake up at night and wander into danger.  They cannot communicate at night when they need to use the bathroom so occasionally at night time I find myself scrubbing the walls and carpet of their bedroom after they finger paint me some of their stinky artwork.  But that is small potatoes.  We are working on it and eventually we won't have nighttime accidents either.  Until that day comes I have put a down payment on some laminate wood flooring for their room and will hopeful have the other half of the money soon so that I can just wipe up the infrequent accidents.  I am secretly hoping that the cold hard floor will give them the incentive to sleep on their beds! 

    I am the mother of 7 beautiful children, 4 of my children have autism, and 2 are nonverbal severe.  I felt obligated to sharing our success story with other families who are struggling with the extremely tiresome complicated task of caring for an autistic child.  Having all of our children using the toilet, except our infant of course, has had such a positive effect on our lives.  This may sound silly, but getting our daughter, Elaina, who is now 6, potty trained actually gave us a lot more hope for her future then we sometimes had.  All children are  capable, it is just so hard and it seems impossible.  If I could just reach one parent struggling with the task and let them know that they are a great parent it was worth sharing our story. 


Natalie Aguirre