Perfectly Quirky

Raising a Person with Autism

Month: April, 2013

Potty Training and Autism

I decided to write a post about our experience in potty training our son with autism, in hopes that our experience can help others trying to do the same. S’s delays are more social in nature, and I will say that cognitively, as well as in gross motor, our son is right on target for his age. S will be 3 in 3 months. Since every child on the spectrum is different, I know that our strategy will not work for all. But, none the less, I will share what we did, in hopes that it will help others.

S has a hard time with transitions and new types of clothing. He has been scared of underwear for a while, so I knew that I had to take this delicately. I knew that just taking away diapers and giving him underwear was not going to work and I knew that we had to do away with diapers right away. There would be no ‘sometimes with diapers and sometimes not’ with him.

So, I decided to take a full 5 days to potty train. I armed myself with the following:

  • Books on potty training
  • Pull ups for nap/night time (NO more diapers)
  • Mini potty
  • Seat ring for big potty
  • Folding portable potty seat cover (for public potties)
  • Baby boxers (too stinking cute)
  • “Big boy” briefs
  • Candy
  • A Potty Chart
  • Lots of loose fitting shorts
  • Puppy training pads
  • Lots of towels and sheets
  • Post-It notes (for the public potty’s auto sensors)
  • A large bottle of Merlot (for me)

The first day, I made the mistake of leaving him in just shorts with no underwear. He urinated on himself, twice, and totally flipped out. I took it light that day, put him into a pull up and then took him out for the rest of the day. He did NOT want to put on the pull up, he wanted his diaper, but I was NOT going back. I had to bribe him with a piece of candy to get him in them… but it worked.

Day two, when he woke up, I took off his pull up and shorts and took him to the potty. I gave him a drink, and we sat there (singing songs and playing games) until he urinated. Then, I made a HUGE deal out his going in the potty. There was dancing, there was singing, there was candy, high fives and a check mark for his potty chart. He was thrilled.

I covered all of our couches with puppy training pads and sheets and then let him run loose all day with no bottoms on. (I turned the heat WAY up, since it was still chili here.) By running around bare bottom, he didn’t get as upset when he peed on himself, since he wasn’t soaking pants. I also think it helped remind him that there was nothing there to catch the pee. He would often ask for his pants, but I would just redirect without making a big deal of the issue.

I continued to offer lots of drinks and spent a lot of time sitting with him at the potty and making a huge deal anytime any pee made it inside. If he started to go while not on the potty, I would carry him to the potty and if ANY of it, even a drop, made it inside, we celebrated. If it was a full miss, I just said “These things happen. Let’s get you cleaned up, and next time, you can try to put your pee in the potty”. I made a point to never say ‘it’s okay’ or to have a negative reaction. I often encouraged him to help me clean it up, but in a positive way.

We don’t often give S candy- so jelly beans were a HUGE motivator for him. Sometimes I think he sat on the potty just praying he would pee so he could get one Yep, I bribed him with sugar. And you know what?, it worked, so I don’t care!

We stayed inside for the next 3 days, only leaving once for a 15 minute walk outside. We were always 10 feet from a potty and it was all potty, all day… for days.

On the 3rd full day, I set out some underwear and boxers on the table. I didn’t try to put any on him, but the next time he asked for pants, I just said that they were on the table and that he could go and pick out a pair. I know that if I had tried to put them on, he would’ve refused, but since I didn’t make a big deal out of it and just let him grab them, it went smoothly. He chose boxers.

I am very proud to say that the whole process only took about a week. He ‘got it’ the second day really, and just needed some refinement as the week went on. He had a few accidents, but most were really our fault (leaving the room for a minute, etc). By the 3rd day he was putting himself on the potty without asking- he just did it himself.

I purchased a portable potty seat cover, that folds up, to keep in my purse for public potties. I also keep a portable potty in the back of our car, just in case. I was sure to make our first trip to a public potty, one that he was very familiar with, and had seen me use multiple times. I wanted him to feel confortable in the environment.

He has done surprisingly well and he only has had one accident while out in public (our very first one). Now that he knows he can ask to go while we are out, he does, and we have done all sorts of things while out and about in his big boy underwear. He can even ‘hold it’ when he knows we are not near a potty, and let me know in time for us to get to one.

Most amazingly, he seems to be nap and night trained as well, only having had one wet pull up since we started. I’m still keeping him in the pull ups for a while though, since I don’t want any unnecessary anxiety around sleeping or underwear, should he wet himself in the night.

It is hard to believe that potty training was so easy for S. I think that mostly, he was just ‘ready’. I also think that for S, it was important that we handled things the way we did. No wishy washy back and forth with diapers, and no cold turkey ‘this is the way we are going to do it’ approach. While we did sort of do it ‘cold turkey’, I didn’t make a big deal out of no more diapers, so he didn’t really get that right away. I dedicated a full week to the potty- no outings, no errands… nothing but potty. I think this helped establish the new normal- his new routine.

In all, it went just fantastic! The first day I dropped him off at daycare in his underwear was a very proud day. He now wears underwear, and hasn’t had an accident in days.

Finally, something with autism that’s easy!

Spring Break and a Lapse in Autism Symptoms

For most families, a break from school means time to spend with family, a few fun day trips and maybe the completion of a few much needed projects around the house. For families living with autism, a break from school means loss of routine and all of the regression that comes with it. It took us almost 3 months to recover from winter break, and anyone who knows me well, knows that just the talk of spring break literally made my eyes well and my voice crack.

I was dreading spring break like a death row inmate dreads the electric chair.

After-all, there would be days with family, day trips and things that needed to be done around the house. The loss of routine was sure to send our sweet little man out of control again. Just at Easter alone, we would have to enter a house- full of people- and then find eggs in the lawn. These things with autism seemed too overwhelming… almost impossible.

You may remember my post about my suspicions about the full moon and  autism and then my next post about the difference a day could make. Little did I know that starting that Friday, I would have a ‘typical’ child for one whole week.

Friday started out awesome, and it continued into Saturday. We watched a few social stories on Easter egg hunts and we took him to one at the local hall. I watched in amazement as he entered the hall with no tantrum, ran around with the kids, did crafts and… hunted for easter eggs!!! It was so awesome, that I took him to another community egg hunt an hour or so later! We even went and had lunch, in a restaurant, where he sat with me and ate.

The next day was Easter and as I mentioned in a previous post, I had several reservations. Mostly, having to walk into a family member’s house. S did great though, and walked in just fine! I was shocked! I stood in amazement as I was able to talk with family and eat food rather than deal with an hour long meltdown and chase him from the stairs for hours on end. He spent most of his time playing with a gift the Easter bunny had brought him (a BMX finger bike) and sitting with my 80 something grandparents… but, he was there… and calm… and confident. He also looked for eggs during the family hunt, and even found the golden egg!

Things went so well over the weekend, that I decided to potty train! I knew this was our last break for a while, and had been bouncing the idea around in my head for a few weeks. I was hesitant, since sitting in the house can be too much for S and he gets really stir crazy. Since he is so sensory seeking, I usually try to keep him out an about as much as possible throughout the day. But, since he was doing so great, we bit the bullet; and it turns out… S is a potty prodigy! He took to it right away and I’m glad to say that we have been diaper-free since we started.

The entire week of spring break was just fantastic. We did all the ‘typical’ things that most families do on a holiday break… we visited family, we did holiday traditions, we took road trips, we ate out, we had play dates and we hung around and spent some time together. He even walked with me in a store!

There was a period of time there, where I actually began to question S’s diagnosis. He seemed so typical. Things were so easy. We had lazy mornings and conversations. Could he have grown out of autism? It was like his symptoms just totally disappeared. Most shockingly… he sang. For the first time, ever, I hear my almost 3 year old sing. It was an amazing moment!

But of course, as the week ended, many of his autistic behaviors resurfaced; though, to a much lesser degree. And while S still very much has autism, he has in many ways matured that week. It is certainly a week that I will remember and cherish forever. And now, now I am not dreading his 3 week break this summer. Hesitant… but not dreading.

“It Only Takes One Time for Something to Become a Pattern”

“It Only Takes One Time for Something to Become a Pattern”. This was recently told to me by S’s OT, in response to some recent feeding issues we have been having.

I will back track a bit, so that you can get a better idea of S’s eating habits. From birth, S always ate great. At six months, S started solids and he was a champion eater. We did a modified version of baby led weaning and he took to most new foods, new textures and new flavors favorably. The only ‘baby food’ we ever really served him were those pureed veggie pouches- mainly because they were organic and convenient for travel and keeping in the diaper bag. He not only ate all sorts of things, but he had a taste for health food and would often snub ‘treats’- opting for watermelon over cupcakes, etc. Then, like most kids, he became a toddler and the usual toddler pickiness entered the scene. No biggie. Our pediatrician warned us about this and assured me that he would eat when he was hungry and that as long as he continued to grow, he was fine.

However, a few months ago, I began to notice a pattern. S was slowing dropping past favorites (pizza, spaghetti, grilled cheese, etc) and was seeming to prefer either foods that were dry and crunchy (dry cereal, crackers, pretzels, nuts, etc) or purees (smoothies, those veggie baby food pouches, yoghurt etc). In fact, the only thing he would really eat in between those textures, was a peanut butter and jelly sandwich. It hit me- my child is 2.5 and still eating like a baby- dry cheerios and baby food pouches. I brought this up to his teacher and she confirmed that S’s eating habits were likely regressing and he seemed to be developing a texture preference.

So, for this and a few other sensory reasons, S started occupational therapy to help introduce him to a wider variety of foods. I wasn’t too worried though- while his menu was limited in texture and variety, it was rich in nutrients. Its not like he was living off of chicken nuggets and soda. He ate low sugar, organic cereals and home-made veggie and fruit smoothies. He drank organic soy milk and overall, preferred healthy foods.

Then, S got sick. So sick that he vomited for 4 straight days, while sleeping on the couch, only waking to puke. He did not eat for 5 straight days. When his appetite finally returned, it was just for crackers and pretzels. And I was fine with that- the kid just puked for 4 days- he needed time for his tummy to settle.

But, it was too late. It only took the one sickness, a few days of eating crackers, for a pattern to develop. Now, now he only wants PB&J and cashews. He is snubbing his cereals, his smoothies, his soy milk. His OT has been working with him for several weeks now, and we are making progress. S will now tolerate non-preferred foods on his plate and will even touch them to get him to put them in his ‘all done bowl’. It is so interesting how quickly something can change and become a new pattern. It happened with bath time, with hair washing, with shoes, and now with eating and food preferences.

For now, S is starting to tolerate some of his old foods again- but still snubbing most. Hopefully soon he will regain his pattern of healthy eating, and in the meantime, we will still work with OT to reintroduce his old foods and slip in a few new ones.

And I guess that is one of the crazy things about autism. Kids on the spectrum are very routine oriented. Like most kids, they thrive on consistency and predictability. However, kids on the spectrum tend to become more rigid with the need for these routines. So, it really does only take one time for something to become a pattern, and you never really know what the next thing is going to be. That’s autism for you- every day is a new normal.

What a Difference a Year Can Make: One Year From Autism Diagnosis

I meant to write this post last week, since as of March 29th it has been one year since S received his autism diagnosis. If you like, you can read this post about S’s journey to diagnosis. And while we may not have known that S received his autism diagnosis until May- we knew in our hearts during that meeting in March. (can you say “new car” and “retail therapy” in the same sentence?)

This time last year, I was so struck with grief, anger and hopelessness, that it is painful to think back to that time. What breaks my heart, is knowing that right now, there are new sets of parents going through the process of accepting diagnosis and a new set of sweet little souls having to deal with this disorder.

So, for all of you new parents out there, who are trying to grasp the concept of living with autism and what that means for you child, know this: While autism has given my son many struggles, it has also given him so many great and endearing quirks that make him the awesome little dude he is. Autism has proven to not be as horrible as I first thought it to be- S has made leaps and bounds this past year and there are lots of things to celebrate.

And so, where are we now? What has this first year brought us?

Well, as a parent, I have good days and bad days. Not surprisingly, those are directly related to our son’s good days and bad days. I am, however, full of hope. Over this past year, S has closed so many gaps…

He has become verbal

He has some shared expression

He has learned his ABC’s

He no longer has frantic bouts with shoes or sleeves

He says “Mommy” and “Daddy”

We have even recently heard “I love you”

He has a friend

He can make eye contact

He is learning some social cues (thank you, excuse me, bless you)

He is starting to show empathy (kissing other’s boo boo’s)

And the list goes on.  This past year has brought S so much progress. And while there are still many struggles, it is easier to focus on the good- which is a great place to be. I will tell you one thing, you will never take any victory for granted. Each milestone is celebrated- no matter how small it may seem to others. Every step forward your child makes is a gift that you will cherish. As a parent, I feel that S’s autism has made me live in the now more- taking in every moment and enjoying my son to the fullest. That is a pretty awesome thing.

So, what will the next year bring?

Starting this month, we will begin to tour schools, as S is going to age out of his early intervention program. He will go to a 5 day a week class and have an IEP. He will take a bus and he will be away from me for 4 hours a day. Our little man is growing up and I know a new set of challenges lie ahead. I have become very comfortable with his early intervention team, and I am not looking forward to the change. But, I know that we must keep going forward… we have no choice, really.

While this past year was full of struggles it was also rich in victories. So, I can honestly say that I look forward to the coming year and what it will bring for S and our family. Here’s to a new year…