Special Needs: Getting Mad

 

I’m a big believer in exposing my kids to art.  Especially fun art – the kind that you immerse yourself in and interact with.  My kids are cool with paintings and all that, but those pale in comparison to actually getting to touch the art.

When I read about the Yayoi Kusama exhibit at the Hirshhorn museum in D.C. I took a minute to mourn what we couldn’t have.  It’s hugely popular – so popular that people have been lining up for hours upon hours to get tickets.  I thought a few snarky comments about people being more interested in good Instagram shots than the art itself (I blame Katy Perry,)  then went back to my regular routine and forgot about it.

Then, a fellow homeschooler called the Hirshhorn and inquired about a school tour.  And they said yes!  They gave us 30 tickets for a weekday guided tour, right as the museum opened and before the crush of people descended.  So of course, I signed us up!  This was a once-in-a-lifetime chance to see this particular artist’s work without triggering the Engineer’s issues.

We all came prepared, asked to arrive at 9:30a.m.  Babies in slings, strollers parked in the right spots, and my massive backpack of stuff put up in a locker downstairs (no bags allowed in the Hirshhorn.)   We were ready and waiting for our tour guide.

And waiting.

waiting

still waiting

30 minutes later (after our leader kept asking the staff what’s going on) the museum staff opened the door for the general public.  And still we waited.

Finally, a harried staff member told us that we weren’t getting a tour and to go get in line upstairs with the rest of the public.

 

All hell breaks loose

I had been getting more and more concerned.  The minute they opened the doors to the public, the Engineer started having a hard time.  He doesn’t wait well anyway.  The crush of people, the overwhelming noise…bad news.  And I left his headphones in the locker because we were supposed to go in the peace and quiet.  Then I couldn’t go get them because they kept telling us “just a minute, guide on the way.”

Meltdown.  Screaming on the floor, me restraining him and trying to keep his flailing feet away from the inquisitive toddler.

I got mad.

Not mad at him: he couldn’t help it.

I got mad at the idiots who couldn’t figure out what their own policy was for school groups.

I got mad at the people who so rudely kept us waiting.

I got mad at the people passing by who had that look on their face while I was restraining him (and juggling 2 other impatient little ones.)

I got mad at the stupid museum design that required me to stretch up 5 escalator steps in order to keep all 3 kids safe.

I got furious at the little niggling voice in my head saying “he has to learn to cope and adapt to this stuff because life won’t adjust to him.” 

NO HE DOESN’T!  Not yet!  He’s 5-years-old!  Can’t anyone cut this little kid some slack?  Doesn’t anyone care that he’s not misbehaving, that he’s dealing with overwhelming sensory crap?

I simmered all the way up the escalator and right into the exhibit: right up until the first mirror room.  I took one look at the huge line of people and I almost gave up.  I almost quit, took the kids, and left.  It wasn’t worth it.  It wasn’t worth the battle of trying to wait in line for 25 seconds of standing in one stupid little room.

 

No, I’m not giving up!

The furious mom inside me smacked me upside the head and demanded that I give my kid what he was looking forward to.  What we had been promised.

I marched my kids right over to a security guard and asked him if there was any way that we could get accommodations for special needs.

I wish I could say magic happened, the seas parted, and the lines of people evaporated.  Nope.  He went to talk to his supervisor.

He did manage to get us jumped ahead of the line, but the staff person letting people in the room thought we were being unfair, so they alternated our school group with people from the line.  I was so happy we avoided another meltdown I didn’t quibble.

But that wasn’t the only line.  Each mirror room had a line.

We went to the next one, a short line with about 20 people and he really wanted to go see the room.  We got in line.

I won’t go into details, but meltdown occurred: disapproval from all around us with frowns and whispered comments.

And then…magic.

The rest of our group showed up with a tour guide and we were snatched out of line and straight to the front.  I’m not sure what exactly happened, but I’m betting it was a combo of my pulling the special needs card and the hard work of our group leader.

Of course, the people around us were … not happy.  One woman left in a huff.  Comments were made.  People got angry.  I didn’t care.

Here’s a little note to those people – the ones I didn’t get to talk to and try to explain things because I was dealing with a screaming, upset kid who just wanted to see the damned mirror rooms and leave.

 

I’m sorry

Dear people-who-resented-us

I’m sorry you had to wait a little longer.  Please understand that we were supposed to be in and out before you even arrived.  Direct your ire at the staff for that screwup.  I know you think we jumped line ahead of you, and honestly, we did.  It’s not fair, and I’m sorry.

But, it’s also not fair that my kid (and 3 others in the group) were born with special needs.  You had to deal with a few moments of inconvenience.  They have to deal with a life-time of issues.

I’m sure you’re thinking why did I chose to bring my special needs kid here anyway?  Shouldn’t we have stayed home?

We did our best to work things out for a quick, easy tour that wouldn’t trigger them.  Circumstances worked against us, and you got to see my kid at his worst.  Even with all that he enjoyed the exhibit.  He wants to build his own mirror rooms now.  

A little empathy and compassion go a long way, and I’m sorry I wasn’t able to explain why you even needed it.  

Hope you got that selfie you wanted.   

 

Why is it that asking for accommodations for my special needs kid makes me feel guilty?   He’s disabled.  He might not look it, but he is.  He’s judged harshly because he looks neurotypical, and I’m judged even more harshly because I should have taught him better/parented differently/beat the crap out of him or whatever.

I’m still mad.

But now, I’m mad at this horrible disorder that he will always have.

I’m furious.

 

9 comments

  1. I’m glad you didn’t give in and leave. One of the benefits of being a 2e myself is that I am able to block out people’s opinions and expressions when my family isn’t operating on social norms (which is pretty often ?). So when we are in line, jumping and counting to 100 again and again, or I’m holding my 6yr old instead of the 3 yr old, or I am covering ears or giving deep sensory hugs or shoulder pressure and rocking…. Honestly, I create our own bubble in my mind. I subconsciously don’t look around me, put on imaginary blinders and just run through lists of coping skills and try to find something that works that time. I grew up not fitting in, embraced it as an adult, and if I can pass at least that comfort on to the kids; I’d be happy. My own horrible disorder has its ups and downs, but I’m still happy to be me.

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    • I’m glad to hear there are benefits to being 2e 😉 Like yours, my family rarely operates on social norms! Thanks for commenting!

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  2. I get it. So hard when we do everything possible to set our kiddos up to succeed and it still goes awry. And part of me gets angry at the judgment and not being able to explain and part of me gets angry because why should we have to explain, anyway?!

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    • It’s tough! I think if people were more educated about special needs I wouldn’t feel the need to explain. And then feel guilty because I couldn’t! Vicious circle there.

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  3. Ugh. People have a hard time understanding anything outside the world inside their box. I have a sensory kid, so I can understand. Actually, I’m a parent, and so I understand even just on that level. Sometimes kids, normal ones, have moments. The people who argue that kids aren’t as well behaved as they used to be seem to have forgotten that children used to just run wild in the country side. Their parents didn’t see them for hours. What happened in the pasture stayed in the pasture. All kids today are dealing with immense sensory overload, and the ones who are very sensitive to it have the worst time. Anyway, I loved this post, even though I hated that you went through it.

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    • Thank you for the support! Such a hard balance as a sensory parent – too much, too little, push them to cope? Hard to know sometimes.

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      • I struggle with it every day, and I feel like I get it wrong most of the time. But I try to remember that at least I’m aware of it and try, and my kids know deep down they are loved. I try to quiet the mommy guilt and just keeping trying. It sounds like your kiddos have a great mommy. 🙂

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  4. I’m reading Steve Silberman’s Neurotribes at the moment. Learning the history of how badly autistic people have been served through recent history calls to mind what’s going on now with the way kids like ours are treated in society. Future generations will be horrified. (One can but hope, anyway!) Well done for not giving up!

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