You're Gonna Hear Me Roar!

I was in my zumba class yesterday - a class I don't usually take, and am not familiar with the music.

TJ's science teacher, from last year, was there too - side note.  Love her.

Anyway, Katy Perry's "Roar" came on, and when the song was done I said to TJ's faboo science teacher, "That is TJ's victory song!"

The funny thing is, I didn't even realize that TJ HAD a victory song until I said it out loud.

But let's think about it - I've always been a musical person.  And every time TJ succeeds at something, or hits a milestone, or accomplishes something that he had been struggling with, that is the song that sums up how it feels for me.

Keep in mind, this isn't HIS victory song for him.  This is MY victory song for him.

I think it's something that I have this song symbolizing his success, like a soundtrack of his life.  I think that as time goes by, I will have more songs in mind that add to his soundtrack.  That's just how my mind works, I guess.

And Peter has a song, too.  Katy Perry's "Firework".  What is it with me and Katy Perry?

I think I'll tell these guys that I have victory songs for them when they get home from school....I can't wait to see the look on their faces.  Another "oh god our mom is nuts" expressions.

And I love every second of it.

Feeling Alone with Autism, Again

Yesterday was Parent/Teacher conference day.

Our son, TJ, is 15 and has autism.  We are used to our parent/teacher conference days by now - we have already met his teachers at open house, and at a team meeting before that, organized by his special educator.  

This is all routine for us, and has been for a while.  And we are in such close contact with TJ’s educational team that at these meetings, there are no surprises.

What was new for us last night, however, was the Adult Services/Transitional informational meeting that we were invited to, and attended, after our conferences with TJ’s teachers.

TJ is a sophmore in high school, so we were grateful for the opportunity to learn about what possible services and programs could be in TJ’s future.

There were a handful of parents there;  in fact, there were more presenters than families.  At first, I thought this was great - there must be so many opportunities for kids like TJ upon high school graduation!

Then, one by one, the presenters spoke about the organizations they represent.  Every program sounded wonderful - employment and educational opportunities with organizations that think of the whole student - academically, socially, and including life skills too!  How great!

As I sat there and listened, however, I began to feel that slow creep of fear.  There is a lot to know about these programs.  And this part of his life always felt very far away - I don’t know if we are ready.  And a lot of the employment they are speaking of are jobs in supermarkets, or restaurants, or front desk jobs at gyms…TJ loves animals and really knows so much about them.  Where would he fit in?  Would he fit in at all?  Do we live in a terrible area for him, with no place to fit his interests, and do we have to think about moving?

All of these thoughts came flooding to me at once.  And then, like a swift kick to the head, came another thought:

I don’t think TJ will have the typical “apply to college and wait for acceptance letters and celebrate with your family when you make your choice” experience.  

This hurt.  A lot.  And I don’t even know why.

I learned a long time ago that most of the experiences that typical kids have, TJ doesn’t.  I have mourned these losses and accepted them, and have learned to treasure every small success he has had, because for TJ and for us, they are not small at all.  

I thought I could handle anything.  I thought I was prepared for whatever came next.

Turns out I’m not as prepared as I thought.

And then I thought of my friends, waiting in line at the gym where parent/teacher conferences take place, to talk to their kids’ teachers.  

And I suddenly felt very left out, very different, and very alone.

I know, logically, that I’m not alone.  Sean, my amazing husband, was sitting right beside me.  And if he was feeling any of these same feelings, he wasn’t giving it away at all.  

I also know that my experiences at those conferences in the gym are similar to that of my friends’ experiences…..right?  Aren’t they?  Or am I oblivious to the fact that there are discussions that parents of typical kids have that we weren’t having?

And in that crowded classroom, I felt like an outsider.  All by myself in that busy, bustling building.

Do we get to make college plans like other parents?  I know that if we do, it certainly won’t look the same.  We will have to work with an outside agency, whose help we need to plan separate living arrangements, and forced socialization, and learning how to share a kitchen, and learning how to take a bus around town.

And that’s just the tip of the iceberg.  

All this time, I suppose that I thought that TJ would go to college, discover his passion, and magically translate that into a job.  It was always my dream for him.  But what if my dream and his dream don’t match?  They most likely won’t.  He probably won’t want to leave home, much less leave the state, and I dreamed that he could go to college anywhere he wanted.  

He probably will always want to stay close to home.

I feel like I’m on the edge of a cliff, looking over, and not knowing what comes next.

And I suppose in some way, I am.  The future is unknown.  The things we have to consider for TJ’s future are much more detailed than that of your typical kid.  The planning has a lot of hands involved.  There are a lot of new things for me to learn as this next big step approaches.

I’ve felt this way before - just before TJ started kindergarten.

So today, even though it hurts, and I feel like an outsider compared to other parents of sophomores, I know that soon, all those tasks that I have to perform for my boy will feel routine.  As I learn more and more about our path, and the process we will have to go through, I will feel more secure, and less alone.

So forward I go, one foot in front of the other, comforted in the fact that although we are on the edge of some very new experiences, we will soon hit our stride, and do just what needs to be done to have TJ just where he needs to be.

Just where he needs to be.

Dear Mr. Biker Dude

Dear Mr. Biker Dude,

You probably don’t remember me, but I remember you.  My son TJ does, too.

We were in that red car at the red light as you waited to turn left into the shopping center last week - we were opposite you.  We were going straight.  Or we were trying to.

I’m the one who leaned out of my window to talk to you - to plead with you - as you blocked the intersection so your 100 biker friends behind you could turn left into the shopping center after your left turn green had turned red.  After our red light had turned green.

Do you remember us?

You blocked the intersection so no one but your buddies could move.  Was there an emergency at Big Lots you all had to get to in a timely manner?  Were you desperate to get to the bank before it closed in 3 hours?  I’m not sure what the emergency was, but it must have been serious for you to think you all had priority over everyone else on the road that day.

I’m sure you didn’t know that my son TJ, who, to someone who just glances at him as he sits in the front seat or my car, has autism.  

Until I told you, that is.

I’m sure you didn't know that he was having a hard time that day as we sat there, knowing how close to home we were, as I prayed that my son, ticking time bomb that he was, could hold out just a little bit longer until we were safe at home, where he could explode in a safe place.

I’m sure you didn’t know that just about 10 minutes before, we had dropped off his father at the airport, where TJ and I said goodbye to our rock for the next two weeks, after he had just returned home from a week long trip the night before.  That TJ got just a taste of what it was like to have his Dad home again before he left again.  That he feeds off of the energy around him, and that that energy contributes to his moods, his stability, and his success.  At school and in his every day life.

I know for a fact that you didn’t see his tears in his eyes, the ones he tried to hide from me, as we drove away from the airport and headed home.

I also know for a fact that you heard my words as I yelled out the window to you, as you held up your hand to ensure that I would “stop” and not plow you over as you illegally blocked the intersection, “Please please let us go through - my son has autism and I need to get him home.  Please.”

I know that your heart must be black as pitch, which you showed me when you shook your head and replied to me, “That’s too bad.”

Then I started trying to soothe my boy, as he started to shake.  He got scared.  Did you know that?  He said “Mom, why is he mean?  Is he going to hurt us?”

After we got home, and after I gave him some deep pressure to try to comfort his overloaded sensory system, and after he had visibly calmed down, he asked me why bikers were so mean.

“They’re not,” I told him.  “We just happen to come across one who was very mean and selfish.  But TJ, you know Suzi and her husband?  He’s a biker - a really nice one.  Remember when you drew pictures with him?  He’s a great artist, just like you.  And remember Diana?  She and her husband are bikers, and they both are so nice!  Remember when she used to come over to hang out with you and Peter?  We see them at the pool all the time.  They are nice bikers.  They aren’t all mean.  We just had some bad luck today.  Do you understand?”

He did.  He’s amazing like that - he has a tendency to think the best of people until they show him otherwise.

So just in case you were wondering, Mr. Biker Dude, TJ did get scared, but he knows that not all bikers are as mean as you were.  He knows not to judge a group of people by one bad apple.  He knows that you all weren’t going to hurt us, but that you were breaking the law and doing something wrong, and that it’s not an ok thing to do, even though you all didn’t get caught.

He also knows that you have a very small mind and a very small heart.  And maybe that’s just my angry influence on his opinion, but hey, nobody’s perfect.

I hope to never see you again,

Lauren

To TJ's Team - I just thought you should know....

I have read a lot of articles lately on what to ask your kid to get the best information out of them at the end of their school day.  Anything but "How was your day?" to which you'll get "fine" and not much else.

I thought I was doing a pretty good job.  TJ and I would chat about what happened and who he spent time with and who he ran in to and what he is studying for the whole ride home.

And I STILL missed a biggie.

Two days ago I got a call from TJ's special educator (SM - the best).  He told me that TJ is really stressed out in one of his classes that he is taking as an elective.  He said that the structure of the class is different than it was last year, and required a background that TJ just didn't have.  It wasn't the fit that he thought it would be for TJ.

I was floored.  Not because TJ wasn't doing well in a class, but because in all the conversations TJ and I have had about the class, I got no indications of his rising stress levels.

Apparently, SM and his para educator were seeing his rising stress levels very clearly, and wanted my permission to take him out of this elective class, with credits he didn't need, and find a better fit.

I immediately said yes, confident that they would find something for him to occupy his time in a less stressful, and therefore more productive, manner.

And of course, they did.  He is enrolled in an art class as an independent study.  I got emails this morning from SM and the para educator saying what a better morning TJ is having, and what a great switch this is for him.

And I almost cried out of happiness, and feelings of good fortune.

We are so lucky that TJ is in such capable, caring, amazing hands at his school.

We are so lucky that these incredible teachers can see things throughout TJ's day that we cannot see.

We are so lucky that they are proactive enough to prevent a complete meltdown.  They jumped at the first signs of stress to investigate what is the source, and what, if any, changes needed to be made.

Sean, Peter and I are so grateful to these wonderful people, at his wonderful school, taking such good care of our wonderful boy.

And I just thought you should know.

Things I Already Knew but Need Mentioning

1. Sean is the biggest dreamboat of all time ever.  EVER.

2. Diverticulitis sucks.  Big time.  Avoid it if you can.

3. Liquid diets suck too.  Holy brutal.  When I almost kiss the doctor who upgrades me to crackers, it's too long on liquid diet.

4. Your colon is your friend - treat it accordingly.

5. TJ should NOT play The Simpsons trivia before bed, unless we want to find him up at 12:30 looking for his Simpsons Book.  God knows how long he was awake but it must have been late because he's still asleep now.

6. My kids are more flexible when I'm sick than when I'm not.  Hmmm.

7. Sam sneaks on the couch to sleep at least 4 times a day.  And looks at me like I'm crazy when I scold him to get down.  Every time.

8. Do not watch Food Network if you are on any kind of restricted diet.  I forget this one all the time.  It's like I have mind-erase when the diverticulitis ends.

9. I actually have missed exercise.  Kudos to my exercise-inspiring friends who have helped me make this a regular part of my life.

10. A lump in your lower abdomen should not always scare you - it's not always the scary tumor you are making up in your imagination.  Sometimes, it just means that you're full of sh!t.

I Called Myself "A Writer"!

So I have had this blog for a while now, and I have loved writing so much.  It's been such a great way for me to express myself, some times more eloquently than others.  

Duh.

But it has only been just over a year now that I have even slightly considered myself "a writer".

I actually said it out loud!  Yesterday I was in the ER - I have diverticulitis again, side note - and my doc asked if I was in the medical field.  

(Thank you, dear doctors sister and brother-in-law, for such faboo medical coaching that apparently I sound like I know what I'm talking about.  To a doctor!)

Anyway, he asked if I was in the medical field, and I said, "No, actually, I'm a freelance writer."

Now, please understand that it's hard for me to say that and not laugh at myself.   I mean, I love writing this blog, but for me, writing a blog does not make me a real writer.  It never did, in my mind.

But then my dear friend Michelle, a real writer for the Washington Post, passed on one of my blog posts about autism to the On Parenting editor a year ago.  And she actually published it.  

What?!?!  I know!!!  And to say it's an honor is a huge understatement!!!

And since then, she has published 11 more of my pieces in the Post's On Parenting section. 12 pieces!!!  In the Washington Post!  Me!!!  How unbelievable and amazing is that?!?!

Have I told this story before?  Forgive me if I have...

And then last year, soon after I was published in the Post, I was contacted by themighty.com - a site that celebrates the "strength, joy and beauty in disability and disease".  They published one of my pieces about autism too.  Then another.  And another.  Suddenly it's a year later and I am one of their regular contributors too.

Me!  I just can't believe it.

Since then I have written for a few other sites as well (including the Organization for Autism Research!).  I have met some incredible, inspirational people, and have been lucky enough to call some of them real friends.

There is a part of me that still feels like I am fooling everyone.  I'm not a writer!  I'm just TJ and Peter's mom.

But I guess I am a writer.  

After all, I said it out loud.

And here are my latest pieces!

http://www.washingtonpost.com/news/parenting/wp/2015/08/31/back-to-school-and-changing-my-job-description/

http://themighty.com/2015/09/how-we-guide-our-son-with-autism-through-his-teenage-years/

Change your Ending

There are a lot of hurt people out there.

Hurt people tend to hurt other people - it's a vicious cycle.  I've done it, and I've seen it.  And since we only have one go-around in this crazy beautiful world, you had better make this round count.

Change your ending.

We are all delt a hand we have no control over.  I could sit around forever lamenting my hand, and feeling loss for what I don't have.

Or I could stand up and work with what I do have.  Focus on the good.  Let go of the bad.  Laugh at it, even.  There are ways!  It's possible!  And what a waste of time to do anything but move forward!

Sometimes we get smacked so hard that we have to sit on the ground for a little bit, stunned, as those stars and birdies spin around our heads.

Let them spin around.  For a little bit.

Then get up.

Need help getting up?  Ask for help!  Those who help you will ask you for help when they need a hand.  That's how it works.

Take what you've been given, and make the rest for yourself.  Make bold moves.  Take risks.  Try new things.  You may surprise yourself with what you can accomplish and how good things can start happening when you are open to letting them in.

Grab the reins.  Change your ending.  Don't accept any pre-determined whatever nonsense.  Go get it and make it happen, and make the ride full of love and smiles and laughter and ridiculousness and friends and fun and joy.

Go.  Now.

Change your ending.  I know you can do it!

Here's who I do it for....