Tuesday, February 28, 2012

The Big Meet And Greet

There comes a time when you are in the dating world that you have to introduce your new boyfriend to your child with autism.

What?  Doesn't everyone have to do that?

Yes, I know just a couple of weeks ago I was posting about finding love, but the joke was on me, when that very afternoon the man I had been seeing for a while decided to ask me to make it official.  I'm pretty sure he read my blog post and realized he better make a move or I was gonna keep on looking.  Who said it was a bad thing to blog about personal stuff?  Worked for me.... this time.

So in the days before the big meet and greet I tried to prepare this man for what could occur during our playdate.

1. Screaming.  Maybe a little headbanging.  Definitely some tantrum of some sort as we were going to be hanging out at Jokers (Chuck E. Cheese on Steroids).
2.  Food issues, having to figure out what to order when out and about.
3.  Language barrier.  He won't talk to you.  He probably won't even acknowledge your presence.
4.  He doesn't sleep.  Okay, this has no bearing on Joker's, but you should know it now.
5.  Did I mention there will be some sort of meltdown?

While I went on and on telling him about Brian and the difficulties that autism can cause, I realized I was doing Brian a real disservice.  I wanted to let my new man know the difficult side so he wouldn't be caught off-guard, but I wasn't telling about all the good things, like...

1.  The way his smile is so infectious.  No one can deny it.
2.  That special something that Brian has that makes anyone around him fall in love with him.
3.  The funny way that he can pull a movie quote out at just the right time ("I can fly" as he jumps from one hotel bed to the other).
4.  The intensity he has when he puts his hands on your cheeks and turns your face to him so he can look into your eyes and then plants a kiss on you. (Yes, kids with autism do look into people's eyes....when it's on their terms).
5.  The persistence he has to keep on trying when everything seems so hard for him.
6.  The way that he can find joy in the simplest pleasures, I think everyone could take a lesson from him.
7.  He is seriously the best cuddler I have ever encountered.

The list could go on and on and on.

I feel like I had good intentions when describing the hardships that come with autism.  I really wanted the meeting to go well and I felt if I prepared for the worst than whatever happened would be a piece of cake.  However, it's not fair to Brian to lead with his not-so-good points, when he has such a plethora of wonderful traits to brag and talk about.

And in the end, Brian didn't have a single meltdown while at Joker's.  He even agreed to play laser tag for the first time ever.  He didn't ask for pizza or any other glutenfied item he can't have.  He didn't scream, cry, or hit his head on anything.  He acknowledged him, later when we went swimming he even grabbed his hand and said "Come in".  He laughed, played, and had the time of his life.  He proved me wrong.  I like it when he does that.

Saturday, February 18, 2012

Advocate, Advocate, Advocate

One role that I quickly learned after Brian's diagnosis was that of an advocate.

I joke with my sisters and tell them it's because I don't know how to shut my mouth.

Typically though I'm a shy and reserved person.

But bring up autism or make me think you did wrong by one of my children and there's no stopping me.

Last month Brian fell and ended up in the ER needing stitches.  I was not impressed with the way they were unprepared for an individual with autism, especially with the rate of autism being so high (here in Maine it is actually 1 in 67).

I complained on facebook.  I complained on here.  I complained to family. Lots of parents reached out to me that they had very similar experiences with their own children on the spectrum.  And that's when I realized just complaining would never make a difference, other than letting me blow steam when I needed to.

So I wrote a letter to the hospital detailing our visit and what could of made the visit easier for Brian.  I tried not to point fingers, I just tried to educate them on autism and the difficulties that come with it.

In the past I would've just let it go.  However, what good does it do for Brian and for all of the other individuals with autism if I don't say something?  How will things change if we don't try to educate and advocate?

I received a reply very quickly from a patient relations coordinator who said she took my letter very seriously and would contact the Director of the Emergency Department.  I was pleased with the reply and I wrote back reiterating that I was very pleased with the response time.

Today I received a letter in my mail from the hospital once again thanking me and telling me the steps they did following my original letter.  The few emergency nurses who are trained in autism are presenting an educational program at the department's staff meeting, the emergency physicians are having a meeting on the topic, and the pediatrics office will be providing materials.  Materials and resources will also be made available to all units at the hospital.

At the end of the letter they wrote, "You are an excellent advocate, not only for your son, but for all those with autism".

Advocating is a huge part of being a parent of a child with special needs and when done right is probably one of the most important roles we have.  We're not just trying to make the world a better place for our own child but for all of the families that follow our path.

Wednesday, February 15, 2012

I Just Want A Hug.

It was another one of those mornings that everything that I asked of Brian made him throw himself into a fit of screams.  He was cranky to the gazillionth degree.  Though I was certain it was just him being stubborn and not wanting to leave the house, I wanted to make sure he was feeling well and I wasn't missing signs of an impeding sickness.

I pulled out his communication book and opened to the page about how he feels.  I asked him to point.  I was waiting for him to grab "mad" or "sad" or maybe even "sick" but instead he pulled off the picture of two people hugging that is labeled "loving" and handed it to me.

I laughed, "Really, you're feeling loving?".

He sat in my lap and started hugging me.

"Oh you want a hug?"

"Yeah, hug."

And we hugged.  And then he continued getting ready for school without another cry.

The power of communication.

Tuesday, February 14, 2012

Unconditional Love

As most of my frequent readers know, I have been on a search for love for a while now.  And being as it is Valentine's Day, I thought I should reflect on that a bit.

People wonder all the time what love is.  Will they know it's love when they find it?  Is there such things as true love, soul mates, and love at first sight?

All I have to do is look in my children's eyes to know that there is.

And maybe that's why I struggle a bit.  I'm not sure I'll ever find a love so true, pure, and unconditional as the love that I feel for my children.

Really, is there a love out there as unconditional?

Think about it....

Brian wakes me up at 2:00 in the morning for the day and I still want to cuddle with him and I laugh at every silly sound he makes.  If a man woke me up for the day at 2:00 in the morning I'd punch him in the face.

They both don't clean up after themselves and make a million of unnecessary messes a day and I just go along with the flow and even laugh at the fact that cleaning a house with them around is like nailing jello to a tree.  If a man made messes 24/7 and didn't clean up after himself, I'd show him the door.

Corbin has quite the knack for whining, despite my age-old "Whining doesn't work in this house!".  Yet, I wait him out until he's ready to discuss the situation with me in a reasonable way.  If a man started whining at me, I'd tell him to fix his own problems.

Brian loves to have meltdowns in a public place.  I kneel down on his level and help block out whatever sensory stimulation is overloading him and carry him out of the environment.  I apply deep pressure and speak in a low voice until he is calm and then I smother him with love.  If a man tried to have a meltdown in a public place, I'd leave him there to be ridiculed.

When Brian first touched my cheek and independently told me, "I yuv you", I honestly felt my heart enlarge.  I felt shivers throughout my body, every hair follicle was standing on end, and my eyes rimmed with tears.  Could a man say anything that would rival that?

Who knows?  I'm not giving up and I'm still waiting for my Prince Charming (who knows? I could have already met him).....but until then, I have two awesome Valentine dates that really could surpass any man out there.

Happy Valentine's Day!

Sunday, February 5, 2012

Add a Drop of Autism.

Every single thing we do on any given day is probably a little bit different than what "typical" families do.

It's because mixed into every recipe of every activity is a drop of autism.

Sometimes it makes it more difficult.  Sometimes it makes it more meaningful.  Sometimes it makes it funnier.  Sometimes it brings you to tears.  Sometimes you just want to stomp your feet and scream.

Lots of children with autism hate being touched.  Hate the very idea of it.  And then others, like my Brian, CRAVE being touched.  They touch everything, they know nothing of this idea of "personal space", they crave deep pressure, and skin-to-skin contact is an aphrodisiac.

My son has been known to squeeze stranger's bare legs in the summer while we're at the grocery store.  He's been known to try to kiss his beloved ed tech at school.  He will try to lift my shirt so he can rub his cheek on my belly, even when we're in public.

Really, I get the brunt of this affection.  And I love it.  I never really get sick of it.

However, when you're trying to put together an elliptical and he decides that he wants to lie across your shoulders horizontally, things get interesting.

You can either look at this instant- at the two extra hours that were added on to the assembly or at how Brian forcefully pushed down on a part and broke off a snap- and decide autism made it more difficult.  Or you could look at this moment- at the fact that he loves his Mama and wants to be near her during every activity- and you can feel your heart grow.  Or you could even look at this picture and see a 55 pound child on his mother's shoulders and see that mom's smile and see that autism added a comedic value.

This time I choose the extra love and laughter.  

Wednesday, February 1, 2012

Mornings are Hell

The crazy thing is is that I am a morning person.  I have an internal clock that never lets me sleep in and I generally wake up full of energy and ready to go.  Especially since Brian has been back on a normal sleeping routine for about two weeks now (KNOCK ON WOOD).

Yet, mornings are hell.  I effin' hate them.

It doesn't matter how early I get up, how prepared I am before I even wake the boys, we are always rushing last minute.

No matter how much planning goes into getting out the door, the morning will entail one or more of the following:

  • The realization that there was homework to be done, that didn't get done
  • I look and realize Corbin has put on his clothes for the day OVER his pajamas and he is completely oblivious to the fact
  • Corbin's ski pants just got up and walked away some time during the middle of the night
  • Brian has decided his pants, underwear, and/or socks are just not going to satisfy his sensory needs for the day so he must change
  • Corbin has a meltdown because he realizes he doesn't have any more gum and he's going to be an anxious mess if he doesn't get that oral stim during his school day
  • Just as we're going out the door one of them sneezes and gets boogers all over my clothes so I have to change
  • A huge tantrum because someone can't watch Mr. Popper say "Stay focused!" over and over and over again
  • Always cleaning up some sort of spill from the morning- usually juice since Brian likes to go in and drink straight out of the bottle
  • Reminding Corbin twenty times that he can't play legos until he is fully ready for school
  • A long talk with Brian about why he must put up the toilet seat when he pees