Monday, April 2, 2018

We Are Aware 2018


I am so lucky to be surrounded by this family, by these friends, and by this love and support. 

I am so lucky to learn from T.J. every day about confidence, courage, humor, drive and flexibility.

I am so lucky to learn from Peter every day about heart, kindness, brotherhood, devotion and love.

I am so lucky to learn from Sean every day about love, partnership, leadership, vulnerability, and strength.

I am so, so lucky.

Autism Awareness and Acceptance Day, 2018

Friday, January 19, 2018

A New Friend

So I found my first grey hair.

On my head, to be clear. I have found stray white eyebrow hairs before but I plucked those suckers and tried to forget them.

I found the single grey hair right where my hair parts. It's curly. My regular hair is bone straight.

The timing of this is suspect, by the way. It all happened a week after my sister and I said OUT LOUD that neither of us have any grey hair yet. She's older. I feel robbed.

And like my friend Jennie always says, "don't bring the evil". I brought it on by saying it out loud. Totally my own fault.

Anyway, tonight I stuck my head right under my husband Sean's nose and demanded he flashlight the hair, to determine if it's white or grey.

He said "It's a different shade of white."

So, it's grey.

Then he asked if I wanted him to pluck it out and I surprised myself when I said "NO!"

I earned that sucker, It's my new friend.

And, it's curly! Maybe my hair will finally have the full body I have always longed for!

Silver lining. Or, grey lining. Whatever.

Sunday, November 12, 2017

Mother Knows Best. Sometimes.

Hi! Long time.

I have a funny story to share with you guys.

Earlier this year, my son Pete came up from the man cave in the basement after playing xbox and said, "Mom, my xbox friend E wants to meet up at Get Air and hang out!"

"No way, Pete. Your friend Evan is probably a pedophile waiting to pounce. Not gonna happen."

I didn't hear any more about Pete's on line friend until 2 weeks ago.

"Mom, my friend E lives in Vermont! He is in a play too so I'm going to go to his play and he's going to come up for my play."

Oh, great.

Then a few days later, Pete can up from the man cave with a stunned look on his face.

"Mom, do you have a friend named A who lives in Stowe?"

" did you know that?"

"She is my friend E's mom! And she told E months ago that I was probably a pedophile too. Small world, right?"

Then he had a cute little "I told ya so" grin on his face.

So E is not a pedophile at all! And we have known his parents A and S for 20 years. And we think they all are awesome and on Friday we went to E's amazing play and this coming Friday they are coming up for Pete's play.

Crazy, right?

But I told Pete "We totally lucked out with that one. No more on line friends. They are all pedophiles. Except E."

Can't be too careful.

Tuesday, April 18, 2017

Autism Awareness

Happy Autism Awareness Month!

My son, T.J., is 16 years old.  He has autism.  He celebrates World Autism Awareness Day as if it’s his own day, just for him.  Which I love.  

Over the years, his confidence has grown so much so that some may call him a little cocky.  Let me give you an example.

“Mom”, T.J. just said to me, as he came downstairs, “part of autism is doing just what you want to do.”

Uh, no.

I explained to him that I don’t think there is anyone, autism or not, who gets to do just what they want to do, all of the time.  

He didn’t like that.  But too bad.  It’s my job as his mom to raise him to be strongly independent, yet responsible.  Not to spoil him.  He will never learn to live independently if I spoil him.

So ok.  He accepted that one. 

Then he said to me, “I think I’ll do my homework as you go to get Dad at the airport.”

Again, no.  

One of his traits is his strong desire to keep home and school separate.  We all have had this, I think, to some degree, but this has been one of his strongest and toughest habits to break in raising T.J.  For years.  He has had full blown melt downs over having to bring homework home, and not getting everything done during the school hours.  Even to the point of lying.  We have discovered from time to time that he will not write down assignments, so that when I check his assignment book after school I will think he has no homework.

He got away with it briefly.  His teachers and I are in constant communication, so it wasn’t long before the jig was up.

And I know how hard he works during his school day to hold it together.  Sensory wise, it’s a tough place for him to be.  When he finally gets home, all he wants to do is relax.

I get that, of course.  But he also has to learn that part of being a student is bringing home homework.  And studying for tests.  At home.

He hates it.  But he does it.  I have to stay on my toes, though, because he will always try to get away with avoiding school work at home.  Always.

These are just some of the things we, as a family, have learned over time.  We have learned that it is pointless to decide that a lesson is learned, and therefore it is over.  That’s not how it works.  We have to see what the day brings us, what our boy’s mood and behavior is, what changes he may be going through, and what compromises we need to make to ensure his well being at all times.

That doesn’t mean he always gets his way.  That rarely means he always gets his way.

It is a lot of work, every day.  But that is our life with autism.

And I love this kid so much, just how he is. 

I wouldn’t change a thing.

Happy Autism Awareness Month!  We are aware!

Sunday, March 26, 2017

Brave Face

When T.J. was little, we had all these goals for when he was done with high school. It felt so far away.
We are here. We are on the edge of it.
In some ways we are ahead of the game, but in many more ways it is not the shiny success story I had my heart set on.
We are realizing that we have to readjust our ideas of "success".
It's a lot to wrap our heads and hearts around. He is amazing - he is the best T.J. he can be - and I am so proud of him.
But I am not proud of me, at all. I didn't set proper expectations in my own head, for all these years. I pushed a lot under the rug and created a much more "typical" picture of where we would be.  
But that's not reality - it never was.
And that's what I now have to reconcile with. It's selfish of me to feel badly, but it's real. And I've always been real here, if nothing else.
I won't feel badly for long, there is no time for it. But there it is. I will keep plowing ahead, and together we will find what's next for our amazing boy, and what is best for him.
Not my DREAM of what I want for him, but what his REALITY is.
I always said to fellow autism parents, "don't look too far ahead. Don't put your expectations of what you want on your kid, they will show you the way bit by bit."
I wish I had listened to my own advice. Brave face. Here we go.

Tuesday, December 20, 2016

Friday, December 9, 2016

Holidays and Autism - How Quickly I Forget!

This time of year is crazy, isn’t it?  That time between Thanksgiving and Christmas?  For our family we find ourselves running around trying to recover from one holiday and gear up for the next.  Throw autism into the mix, and it’s a whole different ballgame.

Let me explain….

My son, T.J., is 16 and has autism. 

Over the years, our holidays have varied between seamless and disaster.  We have had to find what works for our family and tweak it year after year, as different locations, people, and the changes in T.J. himself change how he reacts and behaves.

This year, both T.J. and his brother Peter, 15, had the entire Thanksgiving week off from school.  Thank you, school district!  Those few extra days sure do help our family out!

The Tuesday before Thanksgiving, we drove from our home in Vermont to my sister’s home in Boston.  My sister and her husband have 4 kids and the cousins all really love each other.  But get those monkeys together and the noise level definitely goes up a notch or twelve.

T.J. has learned over time to find a quiet spot for himself in my sister’s house, and retreat there when he needs to have a break.  Everyone is very accepting of whatever T.J. needs to do to be ok with the increase in activity and noise.  No problem.

Thanksgiving day comes along, and we all pile into cars to caravan to our cousin’s house in Connecticut.  Our Thanksgiving crew has grown as our families have grown, and we are quite the loving, rowdy, laughing, fun filled bunch!  It’s really a wonderful group of family, filled with love and understanding for our T.J., who finds his coping mechanism on his own each year.  This year, he spent a lot of time on his iPad and headphones, with breaks in between, and not only was Thanksgiving day a huge success for our noise-sensitive guy, he even stood up and made the most beautiful toast at the beginning of the feast.  It brought me to tears, as he expressed his love for his family so eloquently.

The day after Thanksgiving was another wonderful one, back in Boston, seeing the wonderful family who could not make it to the feast in Connecticut.  A little more low-key than Thanksgiving day, yet still filled with activity.  T.J. did a great job, and we all had a wonderful time.

On Saturday, as we drove home to Vermont, I reflected on T.J. and his behavior over the past few days.  I beamed as I thought of how far he has come - no more meltdowns during the holiday, as he has figured out what works best for him, and how we have all supported his coping skills with the craziness of the travel and people.

I felt so proud.

My husband, Sean, reminded me as we drove that we needed to stop at the outlets to try to find some new jeans for our constantly growing boys.  We knew it would be chaotic, as the outlets were filled with holiday shoppers, but we also knew that desperate times call for desperate measures.  So we stopped.

Long story short, we knew the crowds would be too much for T.J., so we decided to try on jeans for sizing purposes only, and order them on line after we got home.

What I didn’t know, and what Peter told me later, is that T.J. was muttering curse words under his breath the entire time we were there.  He was really stressed out, and holding it together by a thread.

Which explains his behavior when we finally got home.

Without going into details, T.J. exhibited some strong words and signs of anger to both Sean and I after we were home.  The only one who could get through to him and help calm him down was his brother Peter, our hero of the day.

After the close call, and after T.J. and Peter were both settled in back at home, I thought to myself how stupid I can be.

Here I was, walking around like normal and like everything is fine, when brewing beneath the surface of my sweet T.J. was a stressed out boy with autism percolating, ready to blow.

How had I forgotten the years past, when my focus was so keenly placed on how T.J. was doing?  How had I forgotten that his ability to cope with noise, activity and stress is finite?

I have no good excuse.  And to be quite honest, I don’t really need one.

Over the years, we have learned what works and what doesn’t.  Our whole family.  This includes me!  I am ok with however T.J. needs to learn what works for him.  Why was I not ok with how I need to learn what works with him?

On this journey with autism, I have to remember that it is ok to give myself permission to not be right all the time.  I am human.  I slip up.  I forget what I need to do.

As long as no one gets hurt, I am allowed to make mistakes, and continue to learn, just like my boys are.  I have to remember to be as flexible with my own learning as I am with theirs.

Of course I felt silly that I forgot this, but whatever gets all of us through the holidays with laughter and love and wonderful memories and new traditions is 100% ok with me.

Live and learn.  Every day.

I hope you all enjoy your holidays with your families just as much as I look forward to enjoying my holidays with mine.  With patience, love, respect, room for error, and flexibility!  

And cookies.  Lots of cookies.