The Great Potty Conundrum

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So L is now 3 and a half years old, and still not potty trained. I know that a lot of this has to do with his autism, but he is scheduled to start kindergarten in September and I’m hoping that this will be the summer of potty training! I have worked in daycares for the last 12 years and have potty trained many a child. You would therefore think that training my own child would be a cinch, but unfortunately it is not turning out that way. We have reached a turning point in that L is finally showing some interest in the toilet. He asks us when we go, “Mommy you going pee on the toilet?”, and he recognizes that we don’t wear diapers. He has also started to ask to go on the toilet himself sometimes.

My struggle is that that is all he will do. Sit on the toilet. For like 10 seconds. Not really a recipe for successful potty training. I try to get him to sit longer, because nothing is going to happen in 10 seconds, but he absolutely refuses and will often begin to cry. Which stresses both him and I out and doesn’t lead to any advances.

We are kind of at a standstill and I’m not sure which direction to take from here. This weekend we tried training underpants for the first time, but he went pee in them and didn’t appear to notice, or at least didn’t tell his dad or me. I just feel like this is going to be a very long process, and I’m worried about the other children in his new kindergarten class making fun of him for it. The school board has assured me that he doesn’t need to be potty trained to start school and that somebody will change him if needed. This doesn’t really make me feel better though, and our ultimate goal is for L to be trained (at least pee) by September.

So my question to all parents of autistic (and non-autistic) children out there is: how did you potty train your child? Was it a huge struggle? How long did it take? Are there any great strategies that worked for you that you would be willing to share? Wish us luck, and I hope to hear from some of you!

My truth

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I was talking recently to another mom. Not somebody I know very well, or would call a friend, just another mom. I was telling her how tired I was from the previous night when my son had kept me up for hours. And I was tired, the kind of bleary eyed exhaustion which can only be cured with copious amounts of caffeine. Since she was a fellow mom I expected her to commiserate with me, and that maybe we could bond over our shared experiences. Instead she turned to me and said: “Remember, this too shall pass. They aren’t little for long”, and the conversation just sort of stopped. I immediately thought: “Oh, you’re one of those moms”, we all know the ones, those mom’s who seem to sail through this whole parenthood thing. The kind of mom who sees rainbows and butterflies wherever she and her children go, and who I believe to a certain degree is in a bit of self-denial. I could be wrong. Maybe these parents really don’t struggle like I do, maybe for them every moment is a moment full of wonder and delight. All I know is that I am not living in that shiny happy world.
I am living in a world where parenting is one of the hardest things I’ve ever had to do. Where I fight my own selfish impulses on a daily basis, and still struggle with the complete loss of me time. I’m not saying I didn’t make the choice to become a parent completely of my own vorition. I wholeheartedly made that decision, and struggled for a long time to welcome my children into the world. When L arrived and then G just under two years later, I was completely in love and I still am. I wouldn’t trade them for the world, but I am also able to admit to myself that this is hard. I live in a world of constant limbo, where one minute I want to freeze time and spend the rest of my days staring at L and G’s cute little faces, and then the next minute can’t wait until I crawl my way out of the preschool years. Sometimes my husband and I are not sure we are going to survive the lack of sleep, and the constant fighting…oh the constant fighting! Our boys fight over everything, and their screaming can cause me to want to run upstairs, dive under the covers, and not come out for a few years.
Which is why I chose not to surround myself with the supermom’s of the world and their super children. I instead surround myself with some of the most real and awesome mom’s I know (word up to my mom’s group!). A group of ladies who over the last few years have shared with me all of their stories, both the happy shiny kind, and the real elbows-deep in diapers and poop kind. A group of ladies who I am so proud to know and call my friends. So, for all of you soon-to-be parents out there, take my advice to avoid those mom’s and remember that parenting is no cakewalk…it will be one of the best walks you ever take…but it will definitely not be a cakewalk!

Autism Spectrum Sports Readiness Course

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Last Wednesday L and I attended his first ever social activity with other autistic children. It is a sports readiness program for children on the spectrum, and it’s run by Autism Ontario. The best part is that it is run by volunteers and therefore there is no charge to attend. My L is a huge fan of anything active so I thought this would be a great opportunity for him to get out and learn some of the basics like taking turns, throwing and catching, and working as a team. My husband and I want to be able to enroll L in hockey next year since it is his passion, and we need him to have some understanding of sports etiquette before we can do this. So I though that this would be perfect! On the registration form there was no age listed, it just stated that “participants are usually early learners with limited communication skills and no extreme behaviours”. L definitely fell under these requirements so we enrolled. When we walked into the class he was by far the youngest one there! L is three, almost three and a half, and I would say most of the other children were 9 or 10 years old. Being the youngest one he immediately wanted to do nothing but run around the big empty gym, and it was quite a struggle to get him to join in to the circle time at the beginning. He had quite a tantrum, and I had to make him stay there while he kept saying “No Mom! I want to run!!”. The funny thing was they had run on their visual schedule, but L worked himself up so much that by the time they got to that part he no longer wanted to run, and instead continued to tantrum for another 10 minutes. Finally about halfway through the hour he calmed and saw that the other children were having fun, and decided to join in. It was wonderful to see him follow the leaders directions and sit and participate in the circle time at the end! I was very proud of him, especially being the youngest. It turned out to be a wonderful program with wonderful team leaders (who are also IBI therapists), and I’m really looking forward to taking him back this week!

Bad Mother Moment

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Last night I had what I like to call a bad mother moment. It had been a very long day, I had worked another late shift, and it was bathtime. Altogether not a good combination for my patience level. And then both L and G decided to freak out at the exact same time. And I lost it. My patience was blown. I am usually a calm person, but it was just too much for one day, and I had a bit of a mommy meltdown. This consisted of raising my voice a bit too loudly, which did nothing but exacerbate the moment, and then putting them both in their rooms while the screaming continued. I immediately regretted my behaviour and wished I had dealt with the situation differently. I know I’m only human and that these things happen sometimes, but I’m also their mother and their first role model. I’m not supposed to lose my patience, I’m supposed to be the bigger person, the one who shows them how to regulate their emotions in an appropriate way. After all children learn what they see, and this was not how I wanted them to behave as they grow. I sometimes feel in these moments that maybe I’m not cut out for this whole mommy thing, but then I look at those cute squishy faces and can’t imagine my world without them. Motherhood seems to me to be an eternal balancing act between my own selfish impulses and doing what’s best for my boys. Today I fell off the tightrope, tomorrow I’ll strive to do better.

Time for a change

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After much thought I have decided it’s time for a change to my blog. Last year, as some of you know, our son L was diagnosed with autism. It was a devastating and emotional time and blogging about it helped me to work through the emotions I was overwhelmed by. The amazing fact is that L has developed in leaps and bounds over the past year, and has so surpassed our expectations that I am happy to say that his autism is not as all consuming as it was previously. I find myself parenting but with a twist. Things are definitely different around here, and probably always will be, but we are managing and I want to open up this blog to all my parenting journeys. I want to be able to write about our other little guy G as well, so that when he grows up he can also feel and find my love for him in the blogosphere. So moving forward I will be trying out this new approach, and I hope you all will follow me on this new journey.

Autism: “a riddle, wrapped in a mystery, inside an enigma”

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Over the last few months we have seen such huge advancements in L’s development that we have been both surprised and thrilled.  He has made advances not only in his speech and language, but in his social and cognitive development as well. The developments have been so pronounced that they prompted his preschool teacher to say to me that she has no idea why anyone would diagnose him as autistic, and that whoever did so must be crazy, because autistic children “don’t have the social interactions that L does”.  And therein lies the enigma of autism, or rather the view that all autistic children have trouble interacting, and that if they do not demonstrate the stereotypical gestures such as hand flapping or rocking or screaming at a touch, the things we have all come to associate with autism, then that child must not have autism.

It’s a theory that never bothered me before but which bothers me now as a parent of what seems to be a higher functioning autistic.  And it bothers me because if it was up to certain people, even people in my own family, L would not have been diagnosed and would not be receiving all of the critical help that he is now getting.  And this bothers me because it’s not just about L, but about all of the many children who are never diagnosed or who are diagnosed later in life and therefore miss out on that crucial window of early development, on the time when it has been proven that ABA and IBI therapies are most effective at rewiring the brain.

The newest potential threat to these children comes in the form of the new DSM V (Diagnostic and Statistical Manual of Mental Disorders), and the changes to the diagnostic criteria for autism.  It is still too early to tell how the revisions to the definition of autism, and the exclusion of Aspergers and PDD-NOS from the new version of the manual will effect the rates of diagnosis.  But judging by the many articles on the topic the consensus is that this change will not benefit those who have these variations on autism, and that they will in fact fall through the cracks, and not be eligible to receive the vital services that they need.  Those who are affluent will still be able to seek out these therapies privately, but this is a huge cost that most families cannot afford, and without a proper diagnosis many will not be able to access them.  When it comes to my son it makes me glad that L has been diagnosed prior to these changes, as with his increase in language, social interactions and functional play, he may no longer meet all of the criteria for a definitive diagnosis.  And even with these advances he still has a long way to go in his development, and needs the ABA therapy to do so.  I am also glad that we live in Canada and that with his diagnosis these services are provided for him until the age of eighteen at no cost to us.  I can’t wait until his therapy starts, and to hopefully witness many more advances as the years pass.

So what do all of you think about the changes to the DSM?  Are you worried that the possiblity of falling rates of autism will mean less funding and services for these children? Do you wonder what this will mean for these families? Because I know I do…

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Interesting concept: “Is Autism a different operating system?”

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I recently read a post on the Autism Speaks website that I found interesting.  In the post the author, Marc Sirkin, asks: “what if autism isn’t a processing error. What if it’s a totally different operating system?”  I found this idea to be very interesting and a refreshing way to look at things.  I’m providing the link to the article below:

http://www.autismspeaks.org/blog/2012/10/03/autism-different-operating-system?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+AutismSpeaksBlog+%28Autism+Speaks+%7C+Official+Blog%29

I hope you find the concept as intriguing as I do!

Grant Me The Serenity

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“God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

The Serenity Prayer

In my last post I mentioned that even with L’s diagnosis of autism there wasn’t anything my husband or I would change about him.  All of L’s personality traits, little quirks, and all around awesomeness is tied up in his autism. Simply put L would not be L without it.  I’m not meaning to sound cavalier about the whole thing, or the devastation it can cause to families.  We will always wish that L didnt’ have to live with this diagnosis.  It’s not him that I would change though, it’s the following things:

  • I would change all the struggles he will face in the years ahead at school.  All of the testing, and special evaluations, and struggling to keep up with his classmates.  All of the stress this will cause him, and us, and his teachers.
  • I would change the inevitable bullying he will go through just for being different.  I will try my hardest to protect him from this but I can’t be there at all times and I can only hope that others will protect him in my absence.  I remember what it was like to be bullied and I would never want him to go through that.
  • I would change the ignorance that a lot of people have regarding autism.  The ones who will point at him, and talk behind his back, and call him names, and think he deserves less respect than they do.
  • I would change the uncertainty we now face about the future, both L’s and ours.  Not knowing how he will develop is hard, there is no way to predict what path our lives will take.
  • I would change all of the stress and impact this will have on my relationships, most importantly with my husband.  I hope that we will make it through this together and that it will make us stronger.
  • I would change the fact that G will probably have to stand up and protect his older brother, when it’s supposed to be the other way around.
  • I would change the assumption people have that autistic children don’t want or need physical affection.  L both needs and seeks out affection and attention from the people in his life.
  • I would change the stereotype that all autistic children are the same, they’re not.  Every one I’ve met so far has been different from the next, and they all have different strengths and weaknesses.

I can only hope that I will possess the serenity needed for all these changes….

Confirmed…

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We received L’s official diagnosis one week ago, and as much as I had hoped I will not be changing the name of this blog…my feelings about L have been confirmed and so here it is in black on white, on paper, irreversible…

I think the psychologist was surprised at how calmly we took the news, but I’ve been prepping both myself and my husband for this for almost half a year now.  So we remained calm, and looked over the questionnaire results and asked our questions and left with smiles on our faces.  Don’t get me wrong we weren’t happy, it’s just what exactly is the right way to react when you are told such news?  If you’re us you smile, you shake hands and you leave calmly, but you do have a moment on the way to the car and tears are shed.  But then we thought about our little boy and we realized that no matter what there wasn’t a thing we would change about him, except for the hardships he would now face in his future.  There’s nothing else though…autism hasn’t changed who L is, or how wonderful he makes our life, or all of his unique and endearing quirks….he’s just our baby boy, same as before.

The silver lining is that now we are finally able to move forward and begin to get L the extra help and new therapies he will need to thrive in both school and life.

The big day approaches…

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Is it wrong that I’m excited for L’s diagnosis appointment tomorrow? Not excited in the happy sense but in the relief sense. After all these months of waiting we will finally meet with the psychologist to find out L’s future. In my heart of hearts I think I know what she will say but I’m still hoping that I named this blog incorrectly, and that L will not be diagnosed as autistic. Either way I’m just so happy that the waiting will be over, and we will have a definitive answer and be able to move forward. Wish us luck, pray for us and I will update tomorrow.

Posted using Tinydesk Writer iPhone app

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