A Good Weekend!

We had an exceptionally good weekend. "We" meaning Nicholas. There were no tantrums, no major arguing, no big attitude, etc. This is rare and made me happy.

Last weekend came as a much welcomed surprise since he had an especially rough week. His outbursts and lack of self control had been apparent both at home and at school all last week so I was prepared for a long weekend of the same. But when the weekend was over and I realized that we had the opposite of the kind of weekend I was anticipating I began thinking about what it takes to have a "good" weekend. And I think it is important to share this because most people don’t understand Nicholas’, and therefore our, unique struggle, especially since, at first glance, Nicholas appears to be a typical child. When he starts to experience his issues in public strangers think he is just misbehaving and familiar people (family) tend to forget the complexity of the situation.


I should start by defining what a "good" day is. For us, it is one in which we, the parents, don’t have any major frustrations, one in which I don’t feel like pulling my hair out or taking an extra long potty break. A day in which Nicholas follows instructions and directions with minimal effort and he isn’t angry or upset over trivial things. His anxiety is at a manageable level, he isn’t obsessively worrying about something that makes no sense like the complexities of time travel. It is a day in which he doesn’t lash out in anger hitting and kicking and screaming at the top of his lungs that someone should call the police. Because sometimes being asked to stop doing something escalates quickly into such chaos.

Achieving a good day is not easy. It is a combination of many factors, many of which are out of our control.

It starts with us, the parents. We have to make a lot of accommodations for Nicholas because he can’t function the way a NT child his age can. While we don’t try to shield him from everything that can have a negative affect on him, we do try to reduce things that can cause big issues. For example, because of his sensory issues, he is a very picky eater. Sitting him down with a plate of food he does not like and trying to force him to eat it because "you will eat what you are served" is not going to end well. At all. If we know he will not eat what we will be eating then we have an alternative for him that we know he will eat and he usually doesn’t have a say in what the alternative will be. He doesn’t get to dictate his own menu on demand but he isn’t forced to sit in front of something that, to him, is absolutely disgusting. We make these kinds of accommodations about various things, trying to find a balance between teaching him that you don’t always get what you want and not purposefully causing a complete meltdown for the lesson which won’t be learned because of the meltdown.

We also help him cope with things throughout his day. Trying a new food can sometimes be very scary to him and a new situation can cause anxiety. We hold his hand, give hugs, and remind him of the different coping techniques he has learned in his various therapies to help him get through a situation. Most children his age are much better able to cope on their own with going to a new Target than he is.

This leads to the next factor: Nicholas, his age and various issues.

Nicholas is 8 years old by birth. Anyone who has ever lived with or worked with kids this age know that even the most well behaved NT child will make mistakes, misbehave, and have not so good days. These things vary widely from child to child and personality can make a child more, say, spirited than others.

Psychologically he is somewhere between 5 and 6. Intellectually, he is closer to 8. This creates a host of unique issues. Example: As an 8 year old he is able to intellectually understand what time travel is: leaving the present time to go either to the past and to the future. He is also able to conclude that if you go back in time you can do things that will change what the present looks like, he understands that something small can lead to big changes. But as a 5 to 6 year old, psychologically, he fears someone going back in time and changing something that will lead to him not having a parent. Which is why we don’t allow him to watch even PG movies like Back to the Future. He saw it, thought it was cool, and then cried during an hour long anxiety attack over this in which we had to repeatedly re-assure him that time travel is currently not possible so there is no need to worry. We face similar challenges with most PG or higher rated movies so we try to avoid them though we can’t control everything he is exposed to.

This is on top of his various diagnosed issues. These issues are widely affected by external factors so even if Nicholas has the best intentions in behaving perfectly things can still go very wrong. Which leads to the final factor: These external factors.

External factors are those things we cannot control, such as the perfume the person in front of us at the check out line wears, bus delays, sudden weather changes, etc. As parents we cannot prevent these things, we cannot predict these things, and we cannot change these things. Neither can Nicholas. These are things we must deal with as they come and can’t fully prepare for them. There are just too many external factors that can affect Nicholas in any given situation for us to try to come up with a plan for every single one of them. And sometimes they come in a combination which further complicates things. The best we can do is have our own set of tools we can try any time something comes up. Sometimes a tight hug when the sound of a crying baby makes him freak out. If the situation allows, we can walk away. But if he was unable to enjoy his breakfast at iHop because someone in the table next to ours ordered something he found repulsive therefore he not only not ate much but had a high anxiety hour at the restaurant and now he is both hungry and on edge, the crying baby on top of not being able to buy that really cool ne Lego set, even though he was told we would not buy any toys today, may just be the straw that broke the camel’s back and unwanted behaviours are unavoidable. And when you are trying to put all your things on to the conveyer belt and watch the screen to make sure nothing is ringing up a grossly different price than you had anticipated while trying to cope with the crying yourself by tunning it out, this tantrum can be the last thing you needed. (And just to make things more interesting, imaging you’re not an NT adult and you also found the smell of someone else’s breakfast overwhelming, are also greatly disappointed at not being able to just toss in your cart that $175 chair that was just SOOOO COMFY and the sound of that baby crying is like nails on a chalkboard to you. Your own child’s tantrum is close to pushing you over the edge even as you try to be understanding. Yay Target!)

So even when we all have the best of intentions these external factors have the potential to make any moment wish you could live in a bubble.

This weekend was a 3 day weekend for Nicholas. We had company on Saturday, went to Target on Sunday, and stayed in on Monday. There were plenty of external factors, plenty of things that would have led to complete and total meltdowns. But we were able to accommodate his needs, he responded well to our guidance and was not as strong willed as he can be. Going to Target during the Super Bowl is also one of the best times to be there. The potential for disaster was still there but the stars aligned in our favour and things were good. And while things won’t always be good, these good strings of days give us hope that one day there will be many more good days than not.