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Learning as we go

Lessons I learned as a mother of a child on the spectrum

Lessons I learned as a mother of a child on the spectrum

Flexibility is the most important skill we have as parents of children on the Autism Spectrum. Sometimes it seems that just as we get into the swing of a routine, something suddenly changes and we have to modify the rules in an instant. I get it, most days it feels like we're just hanging by a thread, planning and adjusting everything from mealtimes to bedtime. It's exhausting, but our ability to be flexible allows our children to learn and grow.

Throughout my son's early education therapies and even now in preschool, I am constantly reminded that I need to remain flexible based on his needs.

As new challenges arise there have been two lessons I have learned that continue to play an important role in how I parent; understanding the difference between routine versus rigidity and positive versus negative

Necessary routine
Although the terms routine and rigidity may be closely related, for a child with Autism Spectrum Disorder (ASD) there is a distinct difference which requires special planning and attention for parents.

Children on the spectrum rely on routines. Knowing what is to be expected of themselves and their environments helps them to cope with change. Routines allows for a period of mental adjustment prior to transitioning to a new activity or place. Even for minor changes in routines, notifying children ahead of time can provide the time they need to mentally and physically prepare.

In my house, our routine leads the day from getting ready for school, to the drive home, meals then playtime, bath, and finally bedtime. When things are going just right, I am the proud mama to a happy, well-adjusted toddler. On occasion when the unexpected threatens to disrupt our day, I talk about it with my son as soon as possible to give him enough time to process the news.

READ MORE: Diagnosing autism early

Prisoner of rigidity
For a long time, everything about our routine seemed to flow with ease. Then one night Daddy turned off the light instead of me and it was complete chaos. Our son was having a full blown meltdown because the wrong person turned off the light. Without realizing, our son had been making a mental map of our routine, down to the tiniest detail. Our routine has become so perfect and uninterrupted that he couldn't handle even the slightest variation. My son was a prisoner of rigidity.

And just like that, all our hard work to build a comfortable routine for him had to be thrown away to break him from his rigidity. Feeling completely counterintuitive, we started purposely changing our routine to help break those concrete patterns for him. It was heartbreaking.

As a mom, I just want my son to be happy. Forcing him to deal with changes like this was causing him so much turmoil and many nights I just went to bed in tears. I completely understand his strong need for things to be a certain way, to make him feel safe and comfortable and now I'm completely screwing that up for him. The guilt and worry was overwhelming.

If I could create a safe tent just for him I would, full of just the right amount of dinosaur-shaped chicken nuggets and a tablet that never ran out of battery. Unfortunately the world doesn't allow for us to create that bubble. There are days when plans will have to change, when the store won't have dinosaur nuggets, when his favorite show is no longer available on Netflix, when the sun is facing in the wrong window on the drive home. Then I remind myself that instead of a bubble, I have to help him learn to cope with life's inconsistencies and the unexpected.

Every so often, I make small changes in our routine. We try a different bedtime book, I move a piece of furniture, we make one extra stop on the way home. And through each change I am right by his side helping him through the frustration and fear. My flexibility and willingness to constantly modify how I parent will ultimately help decrease his rigidity.

READ MORE: Be your child's biggest advocate

Rewarding behavior in the right way

As parents, we want to reward good behavior and of course, decrease bad behavior. Sometimes, however, the way we address the unwanted behaviors can actually reinforce them. The more attention a child receives for a certain action can perpetuate their desire to repeat it, so once again our flexibility is called into action.

At around two years old, my son started hitting me. It seemed like it came out of nowhere. We don't spank in our house and he's not exposed to that on TV, but yet, here I was blocking his little hands all day long.

Most of his frustration at the time came from his lack of communications skills. When he was frustrated or angry, that's when he would start swatting me. While his therapists and I worked diligently on teaching signs and simple gestures, the hitting continued. And it seemed the more I said "Stop hitting" the more he hit.

Our Early Intervention teacher recognized that I was actually providing a negative reinforcement. Meaning, by constantly saying "stop hitting," I was actually putting emphasis on the unwanted behavior. While it seemed counterintuitive, the new phrase I had to learn was "hands down." Instead of acknowledging the unwanted behavior, I could now put emphasis on the action I did want him to repeat. It's strange to find phrases that said the positive rather than saying "No" and "Don't".

Counting on coffee, Tylenol and flexibility
Another technique I learned was to simply ignore him when it was apparent the sole purpose of the behavior was to gain my attention. For a while, my son would scream at the top of his lungs when he was upset. It's nearly impossible to pretend not to hear glass-shattering shrieks. Those days required a lot of extra coffee and Tylenol. But it worked. Eventually he realized the screaming wasn't helping him get what he wanted so it eventually faded.

It's so tough to raise a toddler on the spectrum. They have a double whammy of growing pains: part sensory overload and part regular toddler tyranny, and a lot of the time I can't tell the difference. So I keep trying new things, new ways of helping him grow and express himself appropriately. On the days when I can think straight, I remember that flexibility is the one of the best mommy super-powers.

Rielly is a part-time writer and full-time mama to an adorable toddler with autism. Her favorite hobbies include naptime, drinking coffee, and trips to Target.