Potty-Training Over-Achievements and Autism

7/26/2013

You know how when something is bothering you it seems to pop up everywhere? For example, if you were worried you were pregnant with unplanned # 3 you might see pregnant people at every turn. (This is not my worry). My thoughts now are on potty-training. I know Kate isn't ready. We have a team of therapists helping us with some of things that top our list of concerns right now.

I hope you understand that we do not put pressure on Kate to complete any of these tasks. We just have priorities that we hope are in her best interest.

These are things we hope will make life easier for Kate.

If I was to write out our list of wishes it might look something like this:

1. Social skills and help making and playing with friends.
2. Communication and help relaying how she feels, if she needs help or if something is wrong.
3. Potty-training.
4. Getting her to wear a ponytail in her hair (don't judge, it is important to me and it would help her stop chewing her hair)

Things that are on the 'don't waste her precious time' list are:

1. Any kind of rote learning of numbers or letters etc.
2. Any kind of discouragement of stimming, like flapping, jumping or spinning.
3. Any attempt at 'extinguishing' a behaviour that may have a valid reason for occurring.
4. Any attempt at changing the core of what she is, autism or not.

So, you can see that potty-training does not even top our list. We don't have unrealistic expectations for Kate in terms of potty-training. We, of course, want this for her but we are not willing to push her one minute before her team thinks she is ready.

Lately, though, it just seems that every Facebook status I read is a celebration of potty-trained 18 month old. When I take Kate into the washroom at a restaurant or the mall I see tiny little children using the stalls as I hoist our girl up to the changing station. She is tall and her feet hang off of the table at her knees. She doesn't mind one bit, though. Just so you know. She doesn't notice those other children or care what they are up to in the stalls. That is my malfunction. Kate smiles and jibber jabbers at them and could not be happier to be out and about with her family.

At three years old, Kate may be late to not be started potty-training yet but she wouldn't be considered abnormal (yet). I know some children/adults will never be potty-trained and I know our problems are minor in comparison. She does get the odd stare for barely fitting on the change station but for the most part it is still a socially acceptable age to be wearing a diaper. My fears exist in the future and they may be unfounded.

I am happy for you and your potty-trained 6 month old. But, do you really have to fill up my feed with that crap?

#kiddingnotkidding

13 Comments

Lucy LeBlanc

7/26/2013 12:33:05 am

I totally understand where you're coming from. When Helena was struggling with communication and trying to get us to understand what she was saying I was constantly hearing from family and friends about their two-year-olds and their lengthy soliloquies. Comments like, "I can't understand a word she is saying," seemed to cut me to the core. I then took a step back and realized that Helena had so many wonderful things about her to celebrate that it wasn't important if Helena could deliver a phonically correct sentence. Just being Helena is enough for me. Kate has so many wonderful character traits to celebrate and she didn't have to be trained to use them. Hugs and love to you all.

sophiestrains link

7/26/2013 02:32:35 am

Potty training is right up there for me after communication. If I am being completely honest with myself the reason for that is- I don't want people to be disgusted by her. It sounds so horrible I know. But the truth is while I will love her as my baby forever, teachers, therapists etc are only human. I know myself a 6 or 7 year old's soiled diaper produces a different physical reaction in people than a baby's or a toddler's. It is my greatest fear that any progress or learning she will achieve would be automatically undermined if she were to need to be changed. I do think she is capable of it and I already dubbed this next year as the year of communication and end of diapers.
Fingers crossed :$

Nicole

7/26/2013 06:58:30 am

I did make a list that looked almost identical when Alexandre started stepping stones. Well, except the ponytail bit!

He is actually the one who prompted for potty training, he was ready before I was. He is 5 1/2 and is completely trained including at night!

Believe me, Kate will let you know when she's ready to tackle it!

Irene

7/26/2013 09:09:43 am

I remember clearly. Alex did it on his own pretty much. He didn't chew his hair, but remember the wee pieces of paper and stuff? Always wondering, what's he chewing on now?

Emily

7/26/2013 02:07:17 pm

I've just started seriously considering potty training, and Isabel just turned 6 years old. She has sensory issues that I think prevent her from "letting go" when she's sitting on the potty. She is definitely capable though, and I just figure it will take as long as it takes.
By the way, ponytails are SO on my list. From birth to 3 Isabel let me style her beautiful, thick curls however I wanted-ponytails, braids, pigtails-adorable styles. At age 4, hair styling stopped and she's just starting to tolerate clips again, which do help prevent hair chewing and keep her hair from hanging in her face, so I completely understand!

Shayla link

7/26/2013 10:11:27 pm

Oh how I feel where you are coming from. My 4.5 year old has ASD and we are still potty training her when and how she is ready. Her intense sensory issues with sound made it very hard for her as well as difficulty in undressing/redressing. I think your approach to tackling it when she is ready is great. My NT daughter is almost 2.5 and she is going at her own pace too.

Angel link

7/27/2013 02:57:10 am

Urg, potty training. It was a tough one here. Daniel was not ready until he was around 6 or 7 years old. He still needs night time pants. I tried everything I could think of and even made the toilet look like a FAN! At the time, his all time favorite thing. Nope, nothing worked.

It did not help that my nieces and nephews were all potty trained at around 2! :-) My family could not understand why he was taking so long. :-/ Even my other two children were around three and half before they were ready to start.

I finally decided to let it go and wait for him. When he was ready that was it. He told me he wanted to use the potty and has ever since.

I think that waiting until he was ready made all the difference in his confidence and my own stress levels. I think you are spot on waiting for her cue.

I try to ignore those types of feed.

8/5/2013 02:06:30 pm

A Step in the Right Direction

Isabel has graduated to wanting to wear only "diaper undies" which is what we call pull-ups. She no longer wants to wear regular diapers, which is a relief since they really don't fit her. She'll usually go when I put her on the potty, but it has to be into the pull-up, no "naked potty" as we call going directly into the toilet. Little victories. By this time next year, we might have a potty trained 7 year old :)

I would like to share Isabel's diagnosis story, but I didn't see a place to do so on the diagnosis page...

Shanell

8/6/2013 03:50:06 am

Emily, Thanks for the comment. Please share your diagnosis story here! I will work on adding a place for sharing such things. Great idea!

8/12/2013 08:24:21 am

Thank you, Shanell. I just wanted to let you know that your blog has been therapeutic for me. I found it about a month ago and have really enjoyed reading it. Kate sounds so much like Isabel it's uncanny and it has been great to read stories that sound like ours, so thanks!

Isabel’s diagnosis
Isabel was born 7/7/07, 12 weeks premature. In the hospital, we encountered people requesting to be induced on this auspicious day, while we hoped against hope that our little girl would not make her debut. But there was no stopping her, despite all the attempts to delay labor, she was coming. I am not saying that Isabel’s ASD diagnosis is because of her prematurity. I will never know if there is a correlation or not. However, prematurity allowed me to remain in denial much longer than I might have had she been born full term. Every delay, every missed milestone seemed to make sense. She was so early, she went through so much in the neonatal intensive care unit, so of course she was behind. It only made sense. And oddly enough, none of the experts we were seeing ever said anything about autism. And we were seeing plenty of experts. She had early intervention just by virtue of being born so early—a special education teacher, a physical therapist, and a speech therapist that visited us monthly. None of them said autism. She attended ECSE-early childhood special education which consisted of a preschool classroom of one teacher and one associate to 8 children, and no one there mentioned autism. I don’t remember at what age this happened, but at some point, Isabel started flapping her hands. Although she babbled and cooed “on time” accounting for her adjusted preemie age, her speech became more and more delayed the older she got. And she didn’t always respond to her name. Sometimes she cocked her head to one side, staring off into space, seemingly listening to something no one else could hear-we always said the fairies were talking to her. Immediately upon seeing the flapping, I thought “is she autistic?” I hate to admit it, but it was an article about Jenny McCarthy’s son’s flapping that first made me wonder about Isabel being autistic. But the checklists never quite fit. Isabel had great eye contact. She adored affection, from her parents at least. She played pretend. Autism just didn’t seem to fit. She went to a developmental pediatrician at age 2, and still, no diagnosis was given, and no mention of autism.
Finally, at age 5, we took Isabel to a neuro-pshychiatrist and received the autism spectrum disorder diagnosis. I cannot begin to describe the frustration I feel that Isabel didn’t get her diagnosis until just last year, or how sickening it is to me to think about all the intensive therapies she could have been receiving for 2 or 3 years now if she’d gotten this diagnosis earlier. Almost daily I wonder how far along she would be now if she’d been in therapy for a couple years. Just this summer we started working with a speech therapist that recommended oral-motor exercises to help improve Isabel’s articulation and it makes so much sense I can’t help but think, “Why the hell did nobody else bring this up to us??” This is the story of my life-how did everyone miss this, why didn’t anyone tell us we should be doing this, where was Isabel’s diagnosis, why didn’t I ask more questions, why didn’t I push for answers to what was going on with her? But I try not to dwell too much. Isabel has now spent 10 months on a waiting list for ABA therapy. In the meantime, we continue to try to take advantage of whatever services we can get, now that Isabel has received a Medicaid waiver and has access to more services than before. And I try to remember that I still have the darling daughter I had before the diagnosis, with her big green eyes and brown ringlets, her joy in making people laugh, her soulful enjoyment of all music, and her love of snuggling. Isabel’s little brother, Josiah, was born in June, and her adaption to the new addition has been quick and truly amazing. She amazes me daily and regardless of what services we’re able to access, I know she’ll continue to amaze everyone around her.

Shanell Mouland

8/12/2013 10:38:46 am

Emily,
Thank you so much for sharing your story. Would you mind if I posted your diagnosis story on another page of my website where parents can share with each other?
Please don't worry too much about what early intervention would have done for your amazing girl. I am learning that therapy is great but it is mainly comprised of playing with your child and following their lead. (I'm not a huge fan of ABA's discrete trials, as you may have read) I bet you have been doing your own therapy all along. Look into Pivotal Response Treatment and I think you'll be pleased. I'm probably telling you something you already know. Please keep coming back and share more stories with me and the blog readers.

8/13/2013 11:56:37 am

Hi Shanell. I wouldn't mind at all if you posted my story on another page.
I did read about your feelings about ABA, which made me feel better, because we have been on this waitlist for ABA for so long, and all I've heard is about how this therapy is THE necessary treatment. I agree with you that most parents probably do therapy on a daily basis and Isabel has progressed so much. Particularly this year she has become much more verbal, and not just echolalia. She is now able to tell us "Isabel mad," "Isabel happy," and "Isabel sad," in addition to requesting, and even understanding more abstract ideas such as the fact that she lives in Des Moines, while her grandmother lives in another town, and her aunt in yet another town. Kate will get to that point too, and it is amazing when they are able to start communicating their needs and feelings. This just happened in the last year for Isabel, after she started kindergarten.
Thanks again for your blog, I look forward to a page where parents can exchange stories and ideas.

8/14/2013 01:58:02 am

Hi Emily, I posted your diagnosis story here:http://www.goteamkate.com/tell-your-story.html#/20130806/share-your-diagnosis-story-here-2989952/

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I talk about Autism, a lot

Potty-Training Over-Achievements and Autism

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