So this happened today.  I’m not sure if I should be sad, frustrated, or annoyed.  Maybe all three.  Maybe none?  After all, it is what it is, and we just have to deal with it.

My older two kids are in a scouting group.  A tour of a police station has been in the works for weeks, but we didn’t really have all the details yet.  Today, we found out that due to space issues, only a limited number of scouts plus 2 leaders would be allowed to go.  Add a 30 minute presentation to that, and I thought about it for all of 2 seconds before I officially backed out of the trip.  Hard nope.

 

I trust the scout leaders – that is not the issue at all.  The issue is 10-15 kids, ages 5-7 sitting still for a 30 minute presentation with only 2 adults to wrangle them.  Even in near-perfect conditions, this falls under the umbrella of “what the hell were you thinking?”  For us … for families with special needs, it can mean the difference between a safe situation and someone getting hurt.

 

I know better now

A few years ago I might have tried anyway.  I might have asked for accommodations, or wrangled to be one of the leaders present.  Today, I shut it down and said no.  Absolutely not.  I’m not putting my kid through that kind of torture.  Even if that means he won’t earn a badge that is notoriously difficult to get, and that everyone else will have.  Even if that means he’s being discriminated against because he can’t handle it.

When you’ve lived with special needs for long enough, you get intimately familiar with the lines.  Those invisible multitudes of barriers that form your life as a special needs parent.  Those lines that hold your kid back from what they want to do, or how they want to behave.  Sure, you can cross those lines, darting quickly over and briefly celebrating before zipping back and breathing a sign of relief.  Some lines you can push.  Some lines you can bend.  But no matter what, you can’t ignore them until your child is able to cope.

 

Crossing the limits is a battle

After years of experimenting with which lines are hard, which lines bend a bit, and which lines vary depending on phases of the moon, diet, and sleep patterns, we know our limits.  We know what our kid can handle, and what will push him past the breaking point. This was one of them.

So I did what any special needs parent does: advocate for my kid until he’s able to cope.  In this case, advocating was being the responsible adult standing up and saying “we’re going to stay home for this trip.”  It was thanking the scout leader for the offer to give us a leader spot, but sticking to my choice of No.  To some point, it also included some self-restraint by not voicing my opinion on the requirements the police station had set and pointing out that they were out of their minds.

 

I haven’t given up

You might think that I’ve given up.  That I’ve accepted my kid’s limitations and refuse to push him further.  Not at all – in fact, we routinely push his limits almost every week.  We do it in a controlled way, in safe settings that don’t involve people armed with guns who might not understand how to handle a meltdown.

I’m sad for him.  I’m sad for his sister, who will miss out as well.  But I’m not going to apologize for knowing our limits and protecting my kids.  I’m a parent.  I’m a special needs parent, and that’s my job.

 

If I do my job well, one day he will soar above those limits.

Knowing Our Limits: Special Needs Parenting
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