When you live at the mercy of your child’s ability to cope with their surroundings

Even after more than a decade of Autism and Special needs parenting, I still struggle with many of the same things that Autism parents just starting their journey are dealing with.

It’s easy to assume that the above statement is referring to behavioral issues with my kids but that would not be accurate.  Sure, my kids are still challenging and yes, it does get frustrating but that’s not really what makes life so difficult. 

One of the biggest challenges that I personally face is a general lack of understanding from the people around me. 

Just so we’re clear and none of my family reads into this, a lack of understanding isn’t necessarily the result of a lack of trying on anyones part.  It’s simply the reality of life as an Autism parent. 

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It’s so difficult to convey the reasons we tend to avoid many of the get togethers that pop up throughout the year, especially the ones with lots of people or that take place out of town.  It’s not that we don’t want to be there, although truthfully, in some cases we’re just too tired to go anywhere. 

When you’re living at the mercy of your child’s ability to cope with their surroundings, you tend to learn those limits pretty quick.  It’s a matter of survival.

There are family gatherings throughout the year that are opted out of because we know what we’re going to have to deal with, either during the event, after the event or both, in regards to our kids limited ability to cope with these types of situations. 

Our families are very understanding of the boys and aren’t bothered by meltdowns or behavioral issues.  Having said that, there’s a world of difference between dealing with something for a brief period of time and having to eat, sleep and breathe it for as long as it takes for our kids to decompress.  It can take sometimes be a struggle for days following an overstimulating event.

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The unpleasant truth is that as Autism parents, we often times have to make decisions based on our own ability or inability to deal with the predictable fallout from our kids getting overstimulated.

The reality is, we’re living in a state of perpetual exhaustion and even getting out of bed can be an overwhelming struggle.

Part of this lack of understanding that exists between Autism parents and their family or friends, may stem from the fact that sometimes, the fallout from our kids being overstimulated, doesn’t occur until after we’ve arrived home. In other words, people might see the child having a great time or behaving well but never see the meltdowns. 

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Sometimes I feel like people believe we’re exaggerating how difficult this whole situation is.  This leads to the belief that we’re avoiding family and friends or that we’re isolating ourselves. 

I wish people in general, would understand that this is simply a matter of survival and has nothing to do with what we want, as parents.. When you live at the mercy of your child’s ability to cope with their surroundings, you do whatever you have to, not to rock the boat.

If you can relate to this, please share your experience below…


  1. dotdash

    You can hope everyone understands, but they don’t really. I know because I’ve been on both sides of this. It’s just too ingrained to think that if you care, you show up at family events, and if you don’t, then that means something. That goes back too far to be overcome by mere words. Would it be so terribly hard — now that there are 2 of you again — to take one child to each event for 10 minutes? I worry about you guys being isolated the way you were before. It seemed to be getting so much better.

    1. Thanks Dot. It just depends on the circumstances. For example, there’s a birthday party for my Grandpa tomorrow but it’s an hour away. Gavin being where he is right now, would not do well. The boys would have fun but be extremely difficult for a day or two afterwards.

      Unfortunately, Lizze, Emmett and Gavin are getting sick anyways and are running fevers, so we can’t go anyway..

      I agree and I don’t want to get isolated either. It’s just a balance of that we need find…

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