Sunday, October 19, 2014

Autism Never Takes a Vacation

I've said it before and I'll say it again: I don't know what I don't know until I suddenly know it.

My husband had business in San Francisco, one of our favorite places.  My boys didn't have school on Thursday and Friday, so we thought it was a great opportunity to show the boys the city, see some of our closest friends, and make some family memories during a long weekend cross-country trip.  Sounds easy, right?

Not so easy.

We arrived Wednesday at 11pm west coast time.  We were all tired tired tired.

Fast forward a couple of fun, busy, touristy days and we go to Palo Alto to stay with one of my closest friends and his family for the last day of our trip.  Saturday morning we set up our plans to see my friends' world that I had heard about so often.  The town of Palo Alto, Stanford, and finally Google, where my friend works.  

On the way to Google, TJ tells us how tired he is and that he just wants to go back to our friends' house.  Sean and I say to him, "TJ, we are almost done.  Let's try our best to try new things before we leave tonight, ok?"

Minutes later when we arrive, TJ is "asleep" and not responding.

Now I admit I felt frustrated, and lost my patience.  I said out loud, "He's faking because he doesn't want to go in."

"I'M NOT FAKING!!!" he yells.

We ask him to get out of the car with the rest of us and although he does, I immediately know, this is not good.  The only way this can go is south, and now all I want to do is avoid a complete meltdown.

As we walk up to the Google offices, TJ loudly says that he is done walking.  Sean tries to prod him along but he is not having it.  Sean says he will stay outside with TJ as the rest of us go in.  As I walk away TJ screams, in the busy courtyard of Google, "YOU'RE A BITCH MOM!"

I kept walking.

Every time something like this happens my heart breaks a little.  I hate to see my boys suffer in any way.  I wasn't necessarily embarrassed, as my friend is like family to me, but it hurt that my boy was struggling.

I felt like I had failed him.

Long story short (too late?), we finished up our visit, said goodbye to our dear friends, and took the red eye flight back home that night.

While I am thrilled that we can travel, and that TJ can tolerate planes and time differences, I have learned that maybe trips with time changes are best used over longer periods of time, rather than over a long weekend.  While he is tolerant of travel, he still has autism, and asking him to be present while his body clock is messed up is not the best way to go.

I have also learned that any lesson I can learn about my sweet boy, as he grows and changes and experiences the world, is a good lesson.  Tough or not.  I can't expect to leave autism behind just because we are on vacation.

Live and learn - him and me.  Always. 

Wednesday, October 8, 2014

To Peter

My dear sweet Peter,

I love you more than any words can express.  Above all I want you to carry that in your back pocket.  You are my baby - my last child.  You made us a family.  You are sensitive - like me - and although sometimes that trait can bite us in the butt, it's a trait I hope you can learn to honor.  It's what opens you up to new opportunities, people, relationships.  It's at the core of who you are.  It's what will draw people to you and one of the things they will love most about you.  It will make you vulnerable to some meanies along the way, but if you truly honor it within yourself you will handle them just fine.

You often feel like you were given a bum deal by being the little brother of a boy with autism.  And in some ways you are right.  Before you were even 1, your entire schedule was dependent on your brother's schedule, as you were driven from appointment to appointment, and as you were stuck in the house as teachers came and went through our revolving door, carrying cool looking toys and games that were not meant for you.  

It wasn't easy.  

You were understandably angry a lot of the time.  I wish for you that it had been different, even though that this constant work of our entire family is what has made your brother as independent as he is today, with so many successes behind and ahead of him.

I wish your toddler years had more playgrounds. 

I wish the focus could have been more evenly split between you and your brother.  You are right - you got the shaft a lot of times when you were little.  I wish I could have made that different for you.

I hope you understand, my sweet Peter, how having a brother with autism has been wonderful for you.  You are stronger than you think you are - at almost 13 you have already learned lessons about joy and success and failure and compromise that most kids your age haven't had the opportunity to learn.  And it has made you the fun, kind, thoughtful boy who is a friend to the new kid in school, and the boy who stands up for the other special needs kids who cross your path.  

When you make a friend, it is done with so much caring and thoughtfulness.  These kids know that.  Some may take advantage of your sensitive thoughtfulness, but you are already recognizing these kids as bad for you, and already have some of the tools you need to sort those who are worth your time from those who are not.  This is a skill that I, at almost 45, am still working on!  I admire that trait so much in you, and if you didn't know, you are an inspiration.  To me, to your dad, to your brother, and to all those other kids who see you face your struggles with your growing confidence.

I know that in a lot of ways, your dealing with your brother's autism is a daily struggle.  For this I wish for you patience, patience, patience.  Don't try to be perfect every day!  There is a time and a place for perfect!  You are entitled to every single feeling you have.  You are right - a lot of the time, life isn't fair.  But it's how you handle the unfairness that counts.  I'll tell you what - if you promise to work on this for yourself a little each day, I will make the same promise.  Because, Peter, this is something you will continue to work on your entire life.  Just when you think you've got it, something changes and you have to start all over again.  But that's the joy of life - all the wonderful changes and challenges that come your way.  Some are real toughies, but I've found that it's those toughies that are our greatest teachers.

And finally, my boy, try to remember that even though your big brother sometimes annoys the crap out of you (yes, there is a time and place to say "crap"), he loves you more than anyone.  Your dad and I have always said that you each are the best thing we ever did for the other one.  You have strengths that your brother looks up to, and your brother has strengths that you look up to.  And you both help each other through those weaknesses you both have.  Autism or not.  There is nothing in this world like a brother, no matter what shape that takes, and we think you both hit the jackpot in the brother department.

I am prouder of you than you could ever know.  And oh, are you loved.

Love, Mom