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.

Wednesday, October 5, 2016

10 Thoughts on Starting School - Autism Edition

1. I am always learning something new about my 16 year old.  We typically begin our school prep about 2 weeks before the first day, so the transition from summer to school runs as smoothly as possible.  For the first time, this included TJ wanting all of his school supplies put together and organized way ahead of time!  Such a difference from last year’s night-before-first-day-of-classes madness!  So not only am I learning what works best for TJ from year to year, TJ is learning what he prefers, communicating his needs clearly, and not waiting until the last minute.  Win-win! 

2. Being a Junior has perks!  Our high school uses a schedule of alternating days (A day, then B day, then A day….).  If you are a Junior and you don’t have a scheduled class, you can leave campus.  On A days, TJ has no first period classes or last period classes.  And nothing beats the grin on that kid’s face when I drop him off on A days, after everyone else has already been there for over and hour.  “See you in 4 hours mom!”  Huge grin, every time.  We are 5 weeks in and the novelty has yet to wear off on him.  It’s a really good grin.

3. At the start of every year I am reminded that his new teachers have yet to know the true TJ. He is a fantastic and funny kid, he is good natured and eager to please, and he loves to make people laugh.  On his first day of school, TJ had Geometry when he thought he had lunch.  His special educator found him in the cafeteria and told him calmly of his mistake - emphasizing that it’s such an easy mistake to make and he is not in trouble at all.  At this point I was told 2 things: (1) TJ walks really fast when he wants to, and (2) he isn’t shy in front of people he doesn’t know.  Apparently, when he got to his classroom late, he announced (loudly) “Sorry I’m late - my schedule screwed me over!”  The kids laughed, which made TJ happy.  I was told that his geometry teacher looked a little puzzled but smiled, and welcomed him immediately.  She doesn’t know TJ yet, or his sense of humor.  But she will.

4. TJ will never not want snack.  He will need his goldfish in a ziplock bag every day until he is old and grey.  That’s just the way it is.

5. TJ showing his little brother, and incoming freshman, Peter around the high school this summer was a great idea that they both benefitted from:  Peter has a leg up in knowing his way around, and TJ is so proud of helping his brother out.  He doesn’t get a lot of those opportunities, so grabbing this one is important.

6. TJ hates homework.  This hasn’t changed.  It’s all about our attitude regarding homework as parents, and following a homework routine.  A calm Mom makes for a calm TJ.  Breathe.

7. Save math homework help for Dad.  See number 6.

8. As TJ’s Mom, it is so important for me to remember to check my email multiple times throughout his day.  TJ’s special educator will send me questions and/or issues throughout his day, some which require a prompt response.  For example, TJ’s best buddy Colby was going to take TJ out for ice cream after school - Colby has his license and it’s their first outing without any parents.  I got an email from his special educator, SM, saying that TJ was upset that I had forgotten to give him his ice cream money.  My quick reply stopped TJ’s worry - Colby was to pick up TJ at home after school, and I will pick up TJ at the regular time.  Immediately SM replied, “Great - all cleared up.  TJ feels much better - he will see you at the regular pick-up time.”  Crisis averted!  And TJ and Colby, plus another friend, had a great time getting ice cream on their own.  

9. TJ’s classmates really love him.  We live in a very supportive community with a fantastic school system - I am so grateful for this.  Everyday.

10. Hard work pays off.  TJ has worked so hard every day since his autism diagnosis, and I worried so much about his future and what it would look like.  Now that he is 16, I see a strong, smart, independent, thoughtful, confident young man standing before me, who can make any future for himself that he chooses.  I still worry, of course, but he advocates for himself so well every day, that I am letting go of so much of that worry.  He knows what is good for him and what isn’t.  He speaks his mind.  He stands up for himself.  He works hard.  He communicates his needs clearly (for the most part - this one is a huge work in progress).  He is proud of who he is.

To say that I am proud of him doesn’t even come close. 

Thursday, August 11, 2016

Take Your Time

My son TJ is 16.  He has autism.

He is going to be a Junior in high school.  He is so excited to be half way done with high school - a thought that, as his mother, makes me a little panicky.  But I digress.

On Monday we got his schedule for the new school year in the mail.  He was so excited to open it!  And the first class on his first day was Driver’s Ed.

Driver’s Ed.  Did I mention I get a little panicky?

No matter, because I studied theatre in college, so whenever I have that parent panic, I go instantly into actress mode, and do my best “I am so easy breezy it’s not even funny” type of mother acting.

It usually works quite well.

It worked well this time, too, which is good, because when big things come up for TJ that we need to work through, I don’t want him to be influenced by me in any way.

So when I saw “Driver’s Ed” on his schedule, I smiled, and said “TJ, you got Driver’s Ed!  That’s great!  So many kids want that class and don’t get it!”

This is true.  It’s a hot commodity, this class.  You can register for it after you’re 15 years old and you can’t get your license without it, unless you wait until you’re over 18.  And if memory serves, not many kids want to wait until they are 18 to start driving.

Now TJ’s first reaction was to smile and say, “Great!”  And then I said to him, “TJ, in order to take this class, you have to have your learner’s permit.  We can sign you up to take the test in about a week or two, but you’ll have to study for it.  How does that make you feel?”

TJ scrunched his nose a little and said, “I don’t know.”

I know that “I don’t know”.  It’s usually a sign of nerves.  So I told him to just look through the rest of his schedule and we can talk about it the next day.

So the next day, I asked TJ how he was feeling about the whole Driver’s Ed thing.  Again, I got an “I don’t know.”  So I suggested we go to the DMV web page and check out their informational videos about driving.

He sat through about half of the video when he said, “Can I stop now?”

Now inside, I’m thinking that our planning time is running out.  If he is going to take the class in 3 weeks, he needs to take his permit exam in 2 weeks, which means he has got to start studying.

But not today.  I gave him one more day to think things through.

So yesterday, I sat down with TJ.  Time to get serious.

“TJ, I know you’re feeling a little nervous about driving.  Are you feeling rushed to get your permit?”


“Would you like to drop the class this semester, and take your time getting your permit?  We can try to get the class another time.  Even next year, if you’re not ready yet.  It’s ok.  And it’s up to you.”

With that, he seemed instantly lighter.  He thought for a second, then said to me, “I think I’d like to wait.”

And as soon as I said OK, he breathed out deeply and said, “Boy do I feel better!”  And then, that smile.

My sweet TJ is on his own schedule.  He always has been.  He learned to ride his bike long after his little brother did.  He didn’t feel comfortable walking home from school alone until late in his Freshman year.  And the first time he went back into the Dentist Office without me with him was yesterday.  

So even though he is already 16, and many of his peers have their driver’s license, my TJ will wait.  He will take his sweet time until it feels right for him.

And that’s a-ok by me.

And now, he can’t wait for school to start.  

Saturday, May 21, 2016

Talk Less....Smile More

I have been obsessed with the Hamilton soundtrack lately.  If you haven't listened to it yet, go do that.  Right now.  I'll wait.

OK - see why?  It's innovative and electric and performed by such huge talent that I am in awe of these skilled people who wrote it and performed it.  It's the musical geek in me - she lives, and she is always hankering for more.

Last night we went to a local bar where a friend's band was performing.  Some of my favorite people were there, and I am always happy to lay my eyes on these people who I adore and hardly ever get to see with our busy lives.  And the band was just fantastic.

Obviously, since it's a bar, the fact that I'm sipping seltzer while my friends have beers and cocktails is always tucked in my back pocket.  I'm aware it's there, but it's not a big deal.  It certainly won't get in the way of my enjoying these wonderful folks, and I'm happy to report that I did just that.

On the way home, it hit me.  As it sometimes does.  Not so much the drinking itself, but more of what has changed in my life because of it.

There is a repeated theme in the show Hamilton: "Talk less, smile more.  Don't let them know what you're against or what you're for."  If you talk less, you make less waves, upset less people, and keep things lighter and happier.

For me, I can't do that.  Not anymore.  This, I believe, is the huge difference between newly sober Lauren and today Lauren.

I have heard that it takes at least three years of sobriety to feel "normal" again after you quit.  For me, it took a bit more.

When I was drinking I was much better at "talk less, smile more."  But during those first three years of sobriety, I slowly began to feel like something was wrong with me.  I felt like I was slowly getting squeezed, and I shouldn't complain about it, as to not rock the boat.  I couldn't figure it out, but I slowly knew that something wasn't right.

Finally I realized my version of "talk less, smile more" was what was making me feel so badly.  I had to make some changes in how I lived my everyday life.  Not to hurt anyone, but to finally take care of myself.  It wasn't pretty - basically I was like a bottle of an extra carbonated seltzer that finally blew (notice I said "seltzer" instead of "champagne" - healthy choices!).  It was a bumpy transition, to say the least, and acceptance of this new me took a long time for me to digest.  But hearing the phrase "talk less, smile more" finally put into context the biggest transition I have ever made in my life.

Some of the losses I experienced are natural as a result of changing my entire being.  I know that it doesn't matter who understands this and who doesn't, even though knowing that some don't understand it still hurts a bit.  Loss sucks, yes, but what huge gains I have made!  Those who do understand me really know the true me, who I can honestly say is better than any me I have lived before (not including my time at boarding school - that was my complete authentic 100% rockin' self, if I do say so).  I don't say everything that pops into my head, and do filter myself, as that's just common courtesy.  And wisdom.  But for the big important stuff, I talk more.  I do it with a smile, but that's just who I am.

I know that "talk less, smile more" really works for some people, and for them, that's the way to go.  I say, do whatever you need to do to live your true, authentic self, whatever that looks like.  Aside from blatantly hurting people for fun, don't do that.  That's just crappy.  But finding out how to live honestly day to day is a gift that I never would have given myself if I hadn't made the decision to stop drinking.

Anyway, that's the latest Lauren realization.  That, and any sentence with the word "pants" in it is funny.  It just is.