Friday, August 8, 2014

We Are Still in Holland

Have you heard of that written piece, "Welcome to Holland"?  It's a beautiful descriptive piece about raising a child with a disability.  If you haven't read it, you really should.  Read it here.

Isn't that nice?  Sometimes it has brought me to tears.

Well, folks, here's what they don't tell you at the end of that piece....


It's true.  Yes, the time of diagnosis is devastating, and makes you feel like your planet is off its axis.  And it is.  But all this becomes your new normal.  You adjust.

But every now and then, you get smacked in the head with the fact that you are still in Holland.

TJ's second grade arts night when the rest of the kids were pulling their parents out of the audience to dance that cute little Chinese dance they learned in music class?  Yeah - I was standing in a windmill waving at the other families who got to dance with their kid.

In actuality, we were fleeing the premises, as TJ was showing signs of meltdown.  He was DONE.

That play in 4th grade, when all the school families were shoved into the High School auditorium for the play that every kid was in?  We were tiptoe-ing through the tulips in Holland.

We never even made it out of the house.  TJ barely made it through dress rehearsal and declared "I'm not going back there!  Don't make me go back!"

(Yes, I know, the whole night was really really long, and everyone we talked to said how lucky we were that we didn't have to go.  Well, it didn't feel lucky.  It felt like we were far, far away from everyone else.)

And now that TJ is a teenager, while every other teenager is really trying to spread their wings, hanging out with friends, going to the mall, cooking by themselves, getting dropped off at the movies with a buddy, we are tucked in our house speaking Dutch.

No offense to the Dutch, of course.  I'm sure it's a lovely language.  But sometimes, dammit, it bums me out that we don't get to watch TJ go through all these typical teenage things.

Now don't get me wrong - we have amazing experiences on this crazy journey called autism.  TJ and Peter were alone last night at home while Sean and I went out to dinner!  In a different town!  No texts from them at all!  And they didn't kill each other or burn down the house!  I believe in miracles!!!

And TJ is spreading his wings in his own way.  He walks the neighborhood all by himself.  Usually he takes a bag of goldfish crackers with him, so at least he's properly carbo-loading, thank god.  And he is doing chores around the house, too.  Yes, he puts the dishes away in places I never would have thought of, but it makes finding a mixing bowl so much more fun.

And he sure does say some funny zingers.  He has the best sense of humor.  And no filter helps, too.  We are always laughing around here.

I know that hankering to leave Holland will come up again....who knows if TJ will ever drive a car?  Or go to college?  But you know what?  We never thought he'd be able to stay alone with his brother while we went out to dinner, either.  And he did.

So I guess, for now, as long as we accept that we will never leave Holland, we really ought to be OK.

It's a good thing I love tulips!

Wednesday, August 6, 2014

Embracing Autism

Embracing autism is....

accepting my 14 year old spending the day in his undies because it's a pick-your-battles day.

using the phrases "quiet hands, please", "eyes here please", "stop grabbing your pants please" (and it's not his pants that he's grabbing), "get South Park out of your head" (he's not allowed to watch South Park but clearly he has...many, many times) a quadrillion times a day.

calling my neighborhood friends to spy on my kid walking around "the loop" so I know he hasn't strayed from his normal route.

finding him on, or under, the dog bed.

finding him on, or under, the dog.

hearing Friends episodes recited, correctly, word for word, but only the episodes with the monkey in it.

asking for a hug and settling for a no-armed lean in.

watching him pretend to be a sea turtle dragging himself onto a beach at the town pool with a smile, and not caring if other people are looking at him funny.

mistaking his sea turtle theatre at the town pool for a beached whale, as he explains "if I was a whale I would be on my side, Mom!  Duh!"

apologizing to people he bumps in to, explaining "body awareness is not his strong suit."

getting my toes stepped on.

only using quick dry nail polish, as my toes are always getting stepped on.

having our own human sea life encyclopedia to answer any sea life question.

and finally....embracing autism is the sheer joy when TJ's genuine smile radiates.  And it makes his brother Peter smile.  And it makes his Dad Sean smile.  

And it makes me smile.

Friday, August 1, 2014

'Normal' is a Bad Word

Yesterday Peter was bossing the hell out of TJ.  Lately, when TJ blows up, he runs out of the house and threatens to take off.  Now not to sound selfish, but I had a lunch planned with a friend I hadn't seen in a while, and I didn't want to cancel it.  Judge if you want, but I haven't gotten out in a long time and I needed it.  

And btw, if you ARE judging, this probably isn't the blog for you.  You can go now.

Anyway, I interfered before things got so heated that TJ blew up.  I used my best Snow White calm voice to ask Peter to please not tell TJ what to do.  

This is when he said, "Mom, I'm helping him to be normal.  Is that ok with you?!"

Snow White promptly left the building.

I took Pete to a different room (yes, he said this in front of TJ) and asked him if he remembered last week, when a 20 year old asshole made fun of TJ playing mini golf.  I did not say asshole to Pete, just using it for you guys because well, he was an asshole.  Anyway, Pete said he remembered.  And it made him really mad.  I told Pete that he just did the same thing by saying TJ isn't normal in front of him.

He got it.

Anyway, long story short, Pete felt bad, apologized to TJ, who hugged his little brother, and I got to go to my lunch.  All's well that ends well.

Except that now that kids TJ's age are going into high school, the difference between them and TJ is more noticeable than ever.  And Pete is often the overlooked one when it comes to our daily struggles, as most of our efforts go towards building TJ's self esteem.

There is no permanent solution.  We deal with our struggles one day at a time, with both boys.  Some days I'm spot on.  Some days I suck.

Most days I'm fabulous.

But in the end, as long as both boys know how loved and cherished they are, I'm doing ok.  Right?  

And as long as they keep talking out the good and the bad, well, I can't ask for much more.

And just out of guilt, I let them have extra iPad time.  Just a little.