Wednesday, February 19, 2014

Once you get past all of the medical issues a special needs parent has to deal with on a daily basis, there is one overwhelmingly present issue that I think is universal to special needs parents, yet probably foreign to those of you lucky enough to have a neurotypical child.

The apology.

I am sorry.  I'm so sorry.

I'm sorry he spit on you.  I'm sorry he threw that.  I'm sorry he peed his pants.  I'm sorry he had a bowel movement that blew out of his diaper.  I'm sorry he grabbed you.  I'm sorry he is freaking out.  I'm sorry he claps and jumps up and down.  I'm sorry he pulls you to what he wants.

What I am realizing, is two things:  1)  It is almost impossible to keep apologizing every day.  2)  If we apologized in full, it might look different to the "normals."

For example....

I'm sorry he spit on you.  He spits when he's pissed off, or when you tell him no.  I imagine it has something to do with the fact he can't say "Go to hell" or "Oh shit" or "This Day Sucks."  Even if we program these phrases into his device, feelings are next to impossible for him to identify.  It's like trying to teach a blind child what the color blue looks like.  He spit on you to tell you off and get your attention.  It probably worked.

I'm sorry he threw that.  He has ears like his mother.  Sensitive.  He loves the sounds of different things falling down the stairs.  He loves the sounds of hard plastic toys hitting tile floors.  He hates the sound of tinfoil and dogs barking.  It's genetic.  He throws because it's fun to listen to.  (And sometimes to tell you off.  See previous explanation...)

I'm sorry he peed his pants.  God, or whomever made this child, thought it would be fun to not only give him no voice and brain damage, but how about messed up signals for when he has to pee?  He is 16 years old and he just became mostly toilet trained this past summer.  He will still pee sometimes because he has a bladder infection, and sometimes to try to get an early bath so we can take him out to eat.  Smart little shit.

And speaking of shit, I'm sorry he had a huge bowel movement that blew out of his diaper.  Chronic constipation is complete bullshit.  He's had it since birth.  He is on multiple medications for this issue, every single day.  And our entire day revolves around his bm's.  How many he's had, what consistency, if he used his device appropriately to tell an adult he had to go.  About fifteen to twenty times a day, I take him to the bathroom.  We mostly make it in time now.  But sometimes we don't.  And sometimes he eats something that blocks him up even worse.

I'm sorry he grabbed you.  He grabbed you because he lacks the ability to say, "Hey, look!"  Or, "That kid is screaming and it's hurting my ears and I want to get your attention to make them shut up."  He grabs because when he really needs your attention, it's the fastest, most available thing for him to do.

I'm sorry he is freaking out.  He has been doing that, in some form or another, for sixteen long years.  There is a reason I am frazzled and overweight and exhausted.  Stupid little things can set him off into a tantrum.  Small little things can also set him off into a tantrum.  Sometimes, caffeine helps to instantly calm him down.  Sometimes, caffeine doesn't make any difference whatsoever.  Usually, we know exactly what it was that set him off.  Occasionally, he surprises us by being bothered by something new, and usually minute.

I'm sorry he claps and jumps up and down.  He's excited.  He didn't get the memo that 16 year old boys are not supposed to clap and jump up and down when they see a train, for example.  Or a semi.  It used to be cows and stars and water.  Now, it's semi trucks and lightning and trains.  It's his way of seeing, "ARE YOU SEEING THIS?  THIS IS SO FRICKING AWESOME!"

I'm sorry he pulls on your hand to guide you to what he wants.  Sometimes, the things he really wants to say are not programmed onto his device.  So pulling you towards it is a quick way to say, "Hey, come look at this and help me out a minute."

Do you get the picture?

If anyone should be frustrated with his behaviors, it should be his family.  We have earned the right to be the president, vice-president, and secretary of the "Please Stop Doing Those Behaviors" club.  It has been hard-won.  We are a battle weary crew; my husband, myself, and my daughter.  We hate all of these behaviors more than anyone else could ever possibly fathom.  And we have tried everything we know of to try to stop them.

BUT HE HAS VALUE REGARDLESS OF HIS BEHAVIORS.

WE ALL DO.  He didn't choose to be like this any more than I chose to have brown eyes.  But here he is, and he's like that anyway.  And he is living his life.  Clapping when he shouldn't.  Squealing when he shouldn't.  Being loud when he shouldn't.  BEING MASON WHEN HE SHOULD.

So, please accept our apologies for every thing he is about to do that is going to annoy or bother you.  And just know we would love to make him perfect and fit into your norm...if only to get a break from the stares, whispers, and apologies.  He is who he is and we have become who we've become to deal with this life.  It stinks.  But he is still awesome.  And he deserves value beyond those behaviors.