I’m Not Sorry My Kids Ruined Your Experience Part 2: Living With Hidden Disabilities

part2

A few days ago I posted about our visit to Colonial Williamsburg.  A lot of it was frustration talking – frustration with the museum itself, the attitudes from some of the attendees, and the negative experiences we had while there.  I got a lot of pushback when it was posted on the Gifted Homeschooler’s Forum Facebook page.  So I would like to address some of the reoccurring themes in the comments and go a little more in-depth about why it’s so hard for my kids (the Engineer especially) to “behave” as people expect them to.  Living with Sensory Processing Disorder, among other things, makes life interesting.

First, the title of the post was pure frustration and sarcasm.  I’m sure we didn’t ruin anyone’s day and were just a minor blip on their irritation meter.  I know this because – “I made my kid leave a situation where he was interested and learning…” – we left.  I got my kids out of the situation before they lost it and the Engineer had one of those meltdowns that leaves me shaky and spectators shocked.

One of the main things that people kept saying was that I didn’t plan well (and then blamed the museum.)  Well, I didn’t give a step-by-step breakdown of how I planned.  I won’t now – you would be too bored.  I’ll simply say that with a special needs kid, I plan everything down to the minute details.  This was no exception.  I did look things up, check out the website, and plan our schedule with event calendar in hand.

I’ll also note that I was aware of the special Homeschool Days programs.  Because those ranged in price from $5-15 per person we had to skip those activities.  Likewise the $20 per person carriage rides.  My kids would have loved that, but I can’t drop $80 on a 10 minute carriage ride because we’re paying for ABA therapy.  The budget is tight.  Given the price of admission, there should be enough stuff for my family to do in this huge living museum without having to pay another $200 or so.  One of my main complaints about the museum itself was that there was almost no one roaming the town in character to interact with.  There were docents in the workshops, but we only encountered one person outside of the buildings.  Museum fail.

The handicapped thing: we have a handicapped placard.  The Engineer is a flight risk, and a hazard to himself.  Not finding a handicapped parking spot means I risk him being hit by a car if he bolted as we crossed the main parking lot.  It’s a real safety issue that most people don’t understand because he looks “normal” and doesn’t have a physical, easy to see disability.

I kept seeing comments about how I let my kids run wild and crazy, thus ruining everyone’s experience.  Perhaps the original post wasn’t specific enough because that wasn’t the case.  The worst situation we encountered (besides lunch, which had its own problems) was the weaver’s workshop.  The docent had a table with items to investigate like hanks of yarn and tools.  It was intended to be hands-on.  But, when he asked a question about the items, the docent couldn’t or wouldn’t acknowledge him because she was giving a presentation to the group of retirees.  He got irritated at being ignored – so we left.  I don’t persist in a situation that doesn’t work for us.

He did want to touch things in the shoemaker’s shop that he wasn’t supposed to.  So we left and moved on to something else.

Why does he have so much trouble?

I know I mentioned SPD (Sensory Processing Disorder) in the original post.  I didn’t mention any of the other issues we deal with.  The Engineer is 5.  On top of that little kid exuberance, he’s been diagnosed with ADHD, anxiety, PDD-NOS (not officially autism, but autistic behaviors. We’re still waiting for the official workup) and his pediatrician thinks he has ODD (Oppositional Defiance Disorder – waiting on the expert’s diagnosis.)  He also has intellectual, psychomotor, and sensual overexcitabilities.

What does all of that really mean?

He can’t sit still.  He has zilch impulse control: he thinks something and then does it.  He can’t control himself, and often gets upset and frustrated because he feels like a bad kid.  His sensory issues put him in constant fight/flight mode, and he reacts to things I don’t even notice.  Add that to the ODD issues and it’s often hard to tell if he’s triggered, anxious, or defiant.  SPD and anxiety alone are enough to send him through the roof in a panic situation.  Ever had a panic attack?  That’s the Engineer’s entire day sometimes.

You see, SPD is a nasty beast of a disorder. Because the Engineer’s body doesn’t work the way he wants it to he feels out of control.  He gets frustrated with things that seem easy to others.  He internalizes “bad kid” because he wants to stop himself from misbehaving but can’t.  He doesn’t understand why he can’t handle “normal” things like going to story time when other kids have no issues.  He looks like a misbehaving brat of a kid when in reality he’s reacting to his environment: things that neurotypical people don’t even notice.  Lights, sounds, colors, smells, textures – it’s all overwhelming and painful because the signals to his brain are misfiring.

The Engineer is a combination of seeking and aversion SPD.  Some things are extremely painful to him.  Other times he needs more more MORE! of a sensation (like falling, jumping, deep pressure) because he’s not getting enough input.  He rackets around the house like a ping-pong ball.  He zooms around playgrounds until he’s a sweaty mess.  And we know this – we know to give him enough space and room to get the wiggles out before we even attempt a sit-still-and-be-quiet activity.

He’s doing better.  He doesn’t bolt from public bathrooms like he used to because someone turns on a hand dryer.  He can handle the peeping frog background noise in the zoo now and we don’t have to leave the area.  But he still has major issues, issues that people immediately see and judge as misbehavior.  He can’t handle a lot of people being around him.  It sends his anxiety sky-high, and he starts to panic.  If he can’t leave, and leave quickly, then we have a meltdown or he elopes (runs away.)  He can’t be quiet.  He’s either full volume or off – by off I mean asleep.  We’re working on appropriate volume control in public places, but it’s super difficult for him to adjust.  He feels like he can’t change it.

So what do you do with a kid like this?  Keep him cooped up at home so that he doesn’t have to deal with the sensory overload and you won’t have to deal with him?  No, because he’ll never learn to cope that way.

SPD and his other diagnosis have one thing in common: these kids have to learn to cope.  It doesn’t come naturally.  They have to practice it and they have to keep trying even when they’re discouraged by failure.

When the Engineer bolted from public bathrooms because of hand dryers, did we stop using public restrooms?  Of course not!  We kept trying.  We recorded audio of dryers and played it back in a controlled situation.  We taught him coping skills like covering his ears and humming.  We kept exposing him to hand dryers so that he could learn to cope.  It’s working.  He actually chose to use a hand dryer instead of towels last week – victory!

We do avoid certain situations because we know he can’t handle them yet.  We stay home a lot, or spend more time outside at playgrounds.  But, it’s important that the Engineer spend time in situations that he struggles with because he has to learn to cope.  He has to learn.

Given my personal experience with Williamsburg and the research I did, it looked like a good place for us to visit because of the hands-on aspect and outdoor room to run.  The Engineer loved one of our local historical sites’ Homeschool Day.  He did things like hoop rolling, watched a open fire cooking demonstration, and wrote with a quill pen; all without any major issues.  He’s gifted.  We’re not doing things in a standard grade format because that’s our normal.

Despite my negative response to Williamsburg we’ll be going back.  It’s a good place for him to stretch his limits and learn social and coping skills.  And just like this time, I’ll be right there watching and ready to swoop in and deal with the situation if he gets overwhelmed.

I don’t want to ruin anyone’s day, including his, but I’m done tolerating the negative attitudes and eye-rolls over a disability people don’t understand.

 

 

 

 

 

 

9 comments

  1. I read your original post and I’m sorry I didn’t comment now. I completely empathised with you and my first thoughts were what an amazing job you are doing in such difficult circumstances. I have two boys 3 and 5 that, although not formally diagnosed as gifted, SPD or 2e, have done my research and believe this to be the case. Needless to say, I GET IT.
    Don’t let narrow minds and negative people get you down. Keep doing what you are doing. You are amazing and your children are lucky to have you.
    I hope next time you go to that place you and your children have a much nicer experience.

    Like

  2. “SPD is a nasty beast of a disorder.” Amen! We too have the fun balance of seeking and avoiding . . . that small window of tolerance that needs constant negotiating on our parts. And, Oh the looks. I know them well. keep fighting the good fight, mama! You’re not alone!

    Like

    • I think the worst part is trying to figure out what’s going on – it’s so hard knowing that we could help our kids but not fully understanding what the problem is at that momemt. And you’re right – constant negotiating is very true!

      Like

  3. It is so hard being a parent, particularly with a child with hidden disabilities. I too am sorry about the pushback on the gifted homeschooling forum page. I’m disappointed people reacted that way. Nothing in your first post made it sound like you just let your kids run wild without any concern for anyone else, and yet that was what the commentors, who probably didn’t all read the article, made it sound like you were doing.

    One of the stupid things I see is that if a person does take a somewhat disruptive child to events, people complain, and if one avoids all those events to avoid disrupting people, then people turn around and say “but why aren’t you socializing your child? Doesn’t your child ever get out? Of course your child acts this way, you don’t take the child out enough….”.

    Like

    • Yup, the constant parenting wars get even worse with special needs kids. Everyone’s an expert, and we’re doing it all wrong. Yikes! Thanks for dropping by!

      Like

  4. I think the main point is that five years old is too young for Colonial Williamsburg, whatever a child’s particular issues might be. At such a young age, other venues and types of experiences are more appropriate and will be more fun for the kids, the family and those around you.

    Like

    • He’s gifted. He’s asynchronous. He wants to learn about this stuff. I’m not dragging him places he doesn’t want to go – and while he may chronologically be young, he’s more than old enough cognitively to learn about colonial America. His 2e issues might be holding him back, but should I limit him because of that? We’ve chosen to let him learn at his pace, and that sometimes means going places most people wouldn’t associate with a 5-year old.

      Like

  5. Wow! I am so saddened that you received such push back in the gifted forum. That should be the exact place where they would “get it”. My son is almost 4, and I have already come to the realization that it is impossible to plan away his spd. We passed up the homeschool day at the aquarium because the thought of him becoming too overstimulated with all of those other people around was not a battle I was willing to gamble on.

    Like

    • That makes me so sad! Our kids shouldn’t have to miss out on stuff because they can’t handle the sensory overload, but the reality is they do. They will continue to miss out until they learn to cope or other people lighten up and give special needs kids a little understanding and accomodation. Thanks for reading and commenting!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.