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  

Wednesday, September 24, 2014

I Am From

TJ had a school assignment to write a poem about where he is from.  The writing is all his.  Please note that you don't see the word "autism" anywhere in his poem.  Is it possible that my dream for him, for a confident boy who lives and loves and laughs and grows like anyone else, is coming true?


I am from

I am from a white house with a back deck, a big fish tank and a messy room.

I am from video games and hot tubs, exotic fish in a saltwater tank and a wildlife encyclopedia.

I am from grandma and grandpa, Sean, Lauren and brother Peter.  Uncle Matt the doctor and Aunt Susan with cousins Jacob, Lilly, Minna and Lucas.

I am from Uncle Matt and Aunt Susan's barn that we visit in the summer.  From ducks, crayfish, water strikers, minnows and frogs.  From 4th of July barbecues and swimming in Countryside pool with my blue mask.

I am from Vermont apples, grilled burgers, no vegetables, ham that doesn't touch my bread and cookies and cake.  From getting my puppy, Sam, and visiting San Diego.


Sent from my iPhone

Wednesday, September 17, 2014

Autism and High School – the Honeymoon is Over




Remember TJ’s fantastic start to high school, where he was so happy and excited and my husband and I breathed a huge sigh of relief?  Remember that?


Well, we shall now refer to that as “the honeymoon period”.  And baby, it’s over.

How could I have forgotten about the honeymoon period?  That amazing week or two when I actually think we are in the clear?

Right after the honeymoon period comes reality.  And it comes crashing in.  And every time it comes crashing in I wonder to myself, how could I have been so foolish to think we were all set?

After the honeymoon period is where the real work begins.

Last week I met with TJ’s new school team – his special educator (who I think we should now refer to as our saving grace), his teachers, and his instructional assistants.

Talk about a rude awakening.  TJ’s behavior in class had regressed to that of his former 6th grade self. 
That’s when the light bulb went off – HE IS STRESSED!  I had no idea how stressful this new school beginning was for him!  TJ does not communicate these feelings with words as much as he does with his behavior, as he is so eager to please everyone.  He would never admit his stress level to anyone.  But after gathering all the input from the school staff, the problem was clear.

I was sad.  But only for a second.  Then I was relieved…thank god we have the problem targeted!  Now we can start to solve it!

And solve it we are, as a team.  Clear communication, and lots of it.  New folder systems so homework assignments are not missed.  Bi-monthly meetings with his special educator so we can touch base on our home and school progress.  Emails emails emails.

That time after the honeymoon period used to make me feel so sad, as if I had somehow failed as a parent.  Now I am empowered by it, fueled with information to give my boy the greatest chance at success.  

I guess you can say we both have grown a lot, my TJ and I.  And we both are still learning.  Everyday.

Thursday, September 11, 2014

Keep Calm and Carry On

So after a fantastic start to a new school year, the novelty has worn off and both my boys are exhibiting signs of stress.  Reality is setting in.  Which is totally manageable....except when it's not.  My job has been more bomb squad than mother lately, diffusing problems between and among these brothers over and over again. 

So after a morning filled with explosive close calls, after Peter is safely deposited in the middle school and I finally get to the front of the high school drop off line in my car, I notice that TJ's back pack is looking a little light.

"TJ, do you have your binder?"
"UGH!  It's at home!"

Now I see his frown and his eyebrows furrowed, as my Mr. Perfectionist's morning is ruined.

This happened yesterday, too, except yesterday it took me over 20 minutes to find his binder after tearing the entire house apart looking for it.  Eventually I found it in the basement near the laundry.  Of course...why didn't I look there first?

So I asked TJ if he knew where he had left it....while the car line behind me is getting longer and longer and TJ is standing outside of the car.

"I left it at home!  I just said that!  You never listen to me!!!"

Deep breath.

"No, sweetie, I mean do you know which room at home?  It took me a long time to find it yesterday."

"AT HOME!  I DON'T KNOW!!!"

Realizing how quickly this is escalating, I give TJ my warmest, calmest, most loving smile as I tell him to head in so he's not late.  Not to worry.  I will go home, find it, and bring it back to him right away.  Breathe deep, TJ, everything is fine.

So he breathes deep and closes the door.  He's still frowning as he turns away to walk into the school.

So I drive home like a crazy person, find his binder (and his math book, too, by the way), get back in my car and drive back to the high school.  Of course I'm behind the only person in the neighborhood who thinks 15 MPH is a totally reasonable speed.

I get to the high school, park, and head in.  First bell hasn't rung yet and the lobby is packed with kids.  I look around - no TJ.  I walk further into the crowd and look some more...no TJ.  I see one of TJ's friends who says hello, and I ask him if he has seen TJ.  Nope.  No one has.

Now a little flame of panic is lit in my belly.  TJ has been known to bolt on occasion if he is upset and wants to go home.  He was upset enough at drop off that this was a very real possibility.

I head into the office to the lady behind the desk who does the paging.  I tell her my son forgot his things and can she page him please?

Sure, she says, leave them right here and I'll make sure he gets them.

No, I say.  He has autism and was upset when I left him here...I need to lay eyes on him.  He sometimes bolts when he's upset.

OK, she says and picks up the phone.

Whew...I think.  She's paging him.

No...wait...she's not paging him, she's making a phone call.

SHE'S MAKING A PHONE CALL?!?!  Didn't she hear me say he bolts?  Hello?!?!  What kind of place is this???

I begin looking around desperately for someone who can help me.  Panic is rising faster in me as I think of him wandering around this part of town he has never walked in by himself. 

Finally I lock eyes with the receptionist who says, sweetly, "Can I help you?"

"Yes, TJ Jordan forgot his things, he has autism and was upset when I left him, and I need him paged right away.  There is a chance he has bolted."

"Oh, yes, TJ.  I'll page him right now."

THANK GOD.

She pages him, and in less than a minute I see him walking towards the office.

It's everything I can do to not bust out in tears.  But I hold it together as he enters the office.

"Hi, buddy!  I'm so happy to see you!  I have your binder and your math book.  Where were you?"

"Hi mom!"  And there's that smile.  "I was in the art room.  Thanks for bringing me my stuff."

"TJ, I was worried for a second there that you took off."

"I didn't take off, mom, I'm right here."  And that smile, again.

"OK, bye mom." and off he goes, before I can even say, "Bye sweet boy.  Have a good day."

So the moral of the story is, there is a time for calm, and there is a time for panic.  I still can't tell the difference sometimes.  But regardless, in times of trouble, I have to remember to follow my own advice that I gave to TJ earlier....

Breathe deep.  Everything is fine.




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....

YOU NEVER EVER LEAVE HOLLAND.

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.