Friday, December 19, 2014

Christmas With a Side of Autism

These are just a few of the highlights we experience in our home during Christmastime with TJ:

  • Starting December 1, non-stop worry that he is on the “naughty list”.

  • Scheduling our annual visit to UVM’s Theatre for their annual presentation of “The Toys Take Over Christmas”, where TJ can see “The REAL Santa.”

  • My non-stop giggling over “The REAL Santa”, who is my friend who runs the Scene Shop.  

  • The prompt ending of my giggling when “The REAL Santa” tells TJ, “Of course you are on the nice list!  But your mother…..”

  • For TJ’s wish list, a color print out of every Power Ranger Mega Zord known to man, many of which are collectables for sale on eBay and cost over $300.  From Japan.

  • “Mom, decorate the house while I’m at school, so when I come home, BAM!  Christmas!”

  • The countdown EVERY morning, yelled:  “SIX MORE DAYS!”  “FIVE MORE DAYS!”…

  • Watching an ancient VCR Tape of “Christmas Eve on Sesame Street” over and over again.  It now creaks and sounds like it’s going to snap in half.

  • “I love my cousins but I think I need some quiet time.  Now.”

  • Preparing everyone for my non-filtered boy.  When asked “Do you like your gift?”, he won’t hesitate to say, “No, not much.”

  • Refusal to eat anything cooked for the big Christmas dinner.  It looks different on fancy plates.

  • The joy in his eyes when he sees that the carrot we left for Rudolph has been nibbled.

  • The special hug he has for his brother, who always manages to get him the perfect gift.

  • The wonder he still has in the magic of the season.  As a believer of Santa, he makes it easy for those around him to believe in miracles.

Wednesday, December 10, 2014

Snow Day!!!


When we get a snow day, both my boys are thrilled.  Should I remind them that they have to make the day up at the end of the year in June, after the neighborhood pool is open?  That would be so mean.....mwah ah ah!!!

A dear friend asked me this morning, "Are snow days harder for you all?  Sorry if they are..."

First of all I was very touched at her thoughtfulness in asking.  I've got some really good friends.

Her question made me think, because these days can indeed be difficult on TJ.  The break in routine has been known to shake him up, and the extra free time is not always a good thing for my boy who gets easily stuck on iPad games.  For both my boys, for that matter.

Then I thought to myself, it's really up to ME how the day goes.

They so often feed off of my energy, and my attitude.  If I am stressed, they are stressed.  If I am lighthearted and goofy, so are they.

So thank you, dear friend, for giving me the chance to decide what kind of day we all are going to have today.  I'm so glad to have been given the opportunity to sit and plan, rather than just go about my business.

And for those of you in this stormy weather today, be safe.  And just as importantly, HAVE FUN!!!

Tuesday, December 9, 2014

My Experience

PLEASE NOTE:  these observations are mine and mine alone.  I am not telling anyone what to think, or feel, or say, or do.  This is just me expressing my own opinions, and in no way trying to influence anyone else’s opinions.  Read on…

This Bill Cosby rapist thing has got me thinking.

My first instinct, after so any women are accusing him, is “where there’s smoke, there’s fire.”  

My second instinct is to think that since there are so many people out there desperate for a quick buck, he is an easy target for false accusations. 

It’s a tricky, sad situation and a slippery slope.  And very confusing.

You see, I have 2 very different experiences with sexual assault.

First, my own personal experience was as a victim of an attempt.  Please note that I HATE calling myself a victim in any situation, but in this one, I was.

My sophomore year in college, a friend’s boyfriend was visiting from out of town.  He brought a friend with him, and that friend was staying in my room.  I had no interest in this friend, other than just being friendly, but that didn’t seem to matter to him, as I woke up in the middle of the night with him on top of me in my bed, kissing me.  I pushed him off and ran out to the bathroom so I could collect myself, and when I got back he was gone.  I slept in the dorm lounge just in case he came back.  He didn’t, until the next day, when he said “Thanks for letting me stay in your room!”.  Ew.  I couldn’t stop shaking as he walked away.  

My roommate was there the whole time, by the way.  I’m not going to get into what she said, except to say that she was not sympathetic or helpful.  And yes, it didn’t go any further than him kissing me, but it’s no fun being woken up by a stranger on top of you, in case you didn’t know.

My second experience was as an observer.  An observer of a false accusation against a good friend.  I can not go into details, except to say that I was present for the alleged incident, or non-incident truth be told, and was interviewed about this non-incident.  Then I was alienated from the rest of my co-workers (with a few exceptions) as my accused friend got fired and I continued to stand up for the truth.

Both situations were ugly.  And both taught me some very important lessons.

First of all, I can’t, in good faith, believe every incident as truth unless I was there to witness it myself.  If I wasn’t there, I have no place judging what is true and what is not true. 

Second of all, lots of men are skeevy.  And lots of women will do anything for attention.

And third, even if a woman feels assaulted, no matter how minor the incident, it is up to her to make things right for herself and gain her power back.  No one can judge how she should be acting or feeling.  Every woman will have her own timeline and own way to find her way back.

Or not.

The same is to be said for those falsely accused men.  Lots of damage can be done to them, and they need as much understanding and support as an assaulted woman.  A very different kind of support, but support all the same.

Anyway, these are just some of the things going through my head.  I don’t know if Bill Cosby is guilty or innocent, and honestly it’s none of my business at all either way.  I wish all those involved peace.  And I wish for the media to back off so they can sort out the mess and heal as needed.

As Normal As Possible

Recently I was given some unsolicited advice on how I could make my 14 year old son with autism appear “as normal as possible”.

Please note the refrain of obscenities I really, really want to use here.

Instead, I will let you all know what we, in our family, consider “normal”.  

In our family, in our world of living with autism, it is “normal” to:

  • Prepare our son before a trip of all the details, including duration and type of travel, sleeping arrangements, planned activities, food options or lack thereof, who we will be visiting, free time activities, and any other information we can possibly collect. 

  • Begin these conversations at least a week ahead of travel time, and mention bits and pieces here and there every day until departure.  Unplanned surprises are not our friend.

  • Engage in deep breathing exercises and body squeezes when our son’s sensory system is overloaded, or when he starts to show signs of stress.

  • Cook 2 meals at every sitting - one for us, and a separate one for TJ and his sensory based palate.

  • Arrive at school pick up 30-45 minutes early so I can park where he knows to find me.

  • Be outside my car, rain, shine or snow, if I can’t get to my regular parking place at school, to remind him to look both ways before crossing the street to get to my car.  Otherwise, he darts across the street the second he sees me, and those high school drivers are not the most aware.

  • Celebrate when I get an email from school that says “TJ initiated a conversation with another student in art today!”  This has happened once.  It was a huge celebration.

  • Forward pictures to relatives of chopped vegetables and cooked bacon that TJ prepared on cooking class, all by himself, without any cuts or finger loss.

  • Spend a half an hour asking TJ questions to figure out why he has his dimple grin, which tells us he is up to no good, or has something inappropriate stuck in his head.

  • Be sworn at during an autism meltdown, only to have him curled up in a crying heap 15 minutes later, asking for forgiveness and angry at himself that he lost his temper.

  • Block the door at the beginning of a meltdown so TJ doesn’t bolt from the house and disappear.

  • Truly cherish small successes, that for us are huge.  Like a hug.

  • Cry silently when we hear our son with autism tell our typical developing son that he loves him.

And many, many more things that are in our “normal” every day lives.  

But most importantly, for us, “normal” is wanting both our boys to simply be happy with who they are.  Not try to be something they are not.

Autism or not. 

And that’s our “normal”.

Wednesday, November 19, 2014

Positive, with a Side of Snark

I've often been asked about my positive attitude.  To which I reply, "I'm not always positive."

I like to think of myself as honest.  Or, positive with a side of snark.

Not bad snark.  Not all snark is bad.  Some snark is just brutally honest.  With humor. 

It's my personal philosophy to try to see the silver lining in everything.  Even in the tough stuff.  Lost friendships?  They made me stronger and taught me to listen to my gut.  Bad autism day?  Don't forget to breathe and not take everything so seriously.  Be calm.  Trouble in other areas of my life?  Be very aware of how much good I have, and always try to find a way to laugh laugh laugh.

A good laugh can fix a lot.

And yes, sometimes I can't be positive.  Sometimes I'm snarky.  It's not always productive.  But it's always honest.  And real.  I'm always real.

And it all reminds me that I can't please all people all of the time.

So here I am, positive with a side of snark.  Take it or leave it.

I'll take it.  I like it!

And while I'm at it, I think I should think of a new word for "snark".  It sounds too negative.  Maybe "sploofy".  That sounds nice.  I don't know....I'll work on it and let you guys know what I come up with.

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