Monday, December 22, 2014

For All of You

What a weird year.

In a lot of ways it has been wonderful - my kids have grown so much, and I couldn't be prouder of the responsible, thoughtful young men they are becoming.  And my dreamboat has proven time and time again how wonderful he is - thank god for him.  He is my rock, and my heart.

In other ways, it has been very tough.  More than once, I have never felt more misunderstood.  In that sense I have dealt with some situations I never have before, and never want to again.

But all in all, I have never been stronger, and I have never felt more supported by my friends and family.  I have some amazing people in my life, and am so fortunate to have them.  I am thankful for them every day.

And I am so fortunate to have these wonderful readers!  I have received such great comments that make me smile, and make me think.  I am so thankful for them as well.

So to all of you, I wish a happy and healthy new year, filled with love, laughs, growth, challenges, successes, and yes, even some failures.  For it is through these failures that we learn the most.

But most of all, I wish you all love, joy and hope.


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

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  

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."


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 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."


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....


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.

Friday, August 1, 2014

'Normal' is a Bad Word

Yesterday Peter was bossing the hell out of TJ.  Lately, when TJ blows up, he runs out of the house and threatens to take off.  Now not to sound selfish, but I had a lunch planned with a friend I hadn't seen in a while, and I didn't want to cancel it.  Judge if you want, but I haven't gotten out in a long time and I needed it.  

And btw, if you ARE judging, this probably isn't the blog for you.  You can go now.

Anyway, I interfered before things got so heated that TJ blew up.  I used my best Snow White calm voice to ask Peter to please not tell TJ what to do.  

This is when he said, "Mom, I'm helping him to be normal.  Is that ok with you?!"

Snow White promptly left the building.

I took Pete to a different room (yes, he said this in front of TJ) and asked him if he remembered last week, when a 20 year old asshole made fun of TJ playing mini golf.  I did not say asshole to Pete, just using it for you guys because well, he was an asshole.  Anyway, Pete said he remembered.  And it made him really mad.  I told Pete that he just did the same thing by saying TJ isn't normal in front of him.

He got it.

Anyway, long story short, Pete felt bad, apologized to TJ, who hugged his little brother, and I got to go to my lunch.  All's well that ends well.

Except that now that kids TJ's age are going into high school, the difference between them and TJ is more noticeable than ever.  And Pete is often the overlooked one when it comes to our daily struggles, as most of our efforts go towards building TJ's self esteem.

There is no permanent solution.  We deal with our struggles one day at a time, with both boys.  Some days I'm spot on.  Some days I suck.

Most days I'm fabulous.

But in the end, as long as both boys know how loved and cherished they are, I'm doing ok.  Right?  

And as long as they keep talking out the good and the bad, well, I can't ask for much more.

And just out of guilt, I let them have extra iPad time.  Just a little.


Tuesday, July 22, 2014

It's the Little Things

You never know what you don't know.

Does that make sense?

What I mean is, I have no idea what I have to work on with TJ until I start working on something else.

Summer is very hard.  I can't just send TJ to camp.  He is a home body.  Well, truth be told, he is one of the laziest kiddos I know (he gets it from me).  All he wants to do is stay at home and play on his iPad.  If you know anything about autism, you know that this is a bad thing to let him do all day, every day.  So it's my job to shake things up for him and get him moving.  I'm no autism specialist, but I am a TJ specialist.  So while I can't direct him in academics, I can direct him in simple everyday life lessons.

Like walking down a sidewalk with someone.

That sounds like nothing, right?  Well, in my simple desire of just wanting him to get out of the house and move, I have unearthed more things that come so easily to other people, but are difficult for TJ.

Things like sharing sidewalk space.  He walks right down the middle, as if he's alone.  I've had to remind him that we are supposed to be walking together, and to make room next to him for me.  

Then, there's pace.  He has long giraffe legs so he walks faster than I do.  I've reminded him repeatedly to slow down and match pace with the person he's with.  

He keeps forgetting both.  I've gotten stepped on quite a bit.  He's got big feet.

Then there is conversation.  Waiting for responses.  Listening to the other person.  Asking about their interests.  Listening to the other person.  Listening to the other person.

It's challenging.  And surprising.  Surprising that he didn't already know these things.  But these are the small, simple things that create connections with others.  And for a kid about to start high school, these are so, so important.

So there you go.  I never knew what I didn't know.  

I wonder what else I don't know?....

Monday, July 14, 2014

I want you to be a girl

"Mom, did dad feed my fish?
"TJ I don't know.  He's walking the dog; you're going to have to wait until he's home and ask him."
"Argh.  Ok."

About 10 minutes later....

"Mom do you know if dad fed my fish?"
"TJ please wait until dad is home so you can ask him yourself, ok?"

And 5 minutes after that....

"Mom did dad feed my fish or not?!"
"TJ do you remember what I answered a few minutes ago?"
"That I have to wait until he's back from his walk and ask him myself."
"That's right."

"God that's so annoying TJ!  Mom said you have to wait!  Didn't you listen?!"

I quietly asked Peter to come into my room.

"Pete, some things we just have to accept and be patient about with TJ."

"I know but it's so annoying!  And he learns stuff all the time, maybe he can change.  I'm sick of it."

"Well what if I said I'm sick of your hair and I wish it were black?"

"Anyone can change their hair color."

"Ok then, Pete, I wish you were a girl.  How about that?"


"Pete honey, I absolutely do not wish you were a girl.  But what if I did?  You can't just change the nature of who you are, can you?"


"Well neither can TJ, sweetie.  Some things we just have to be patient with, no matter how annoying."

"Ugh.  I get it mom."

It's going to be interesting to see, as Peter gets older, how he deals with his developing understanding of autism and the role it plays in his life.  It's going to be bumpy, just like anything a kid needs to learn about.  But I also know that when push comes to shove, no one has TJ's back like his brother.

We will see.  

And if he's annoyed by this, what's he going to do when Sean and I tease him in front of his future girlfriends?!?!  

Tuesday, July 1, 2014

Lessons Learned

Here are some things I've learned lately:

According to TJ, his cousins drive him "bazonkers".  That doesn't stop him from turning into Shecky Jordan at night and saying boarderline inappropriate things to make them all laugh.  I love it.

My brilliant sister, the smartest person I know, gets incredibly freaked out in water where she can't see her feet.  Never knew that.  And she still swims in the lake with her kids, because that's the kind of mom she is.

My brother-in-law is a fantastic person and so much fun to be around.  I already knew this but I just thought it should be said.

When you have a friend who just radiates goodness, and he has a faboo wedding to another guy who also radiates goodness, chances are it will be a fantastic wedding where you will love his friends, who also radiate goodness.  Even while giving some fierce Resting Bitch Face (or RBF).

My youngest is quite possibly the sweetest kid/young man on the planet.  Thoughtful, empathetic, helpful, loving.  With the best nose freckles evah.  

My Sean continues to be the biggest dreamboat, and the best friend, I could ever imagine.  And a great person to road trip with. 

And finally, I've learned that good things come to those who wait.  I'm 3 years sober today.  This past year has been a difficult struggle, to say the least, and it was worth every second to get me where I am today.  Happy and healthy.  With cute shoes.  Always with cute shoes.

Oh - I also learned that a ball thwacky game thingy is called a "ding-a-ling", which really just seems kind of insulting.  It should be named something much cooler.  Like Knuckle Buster.

Thursday, June 12, 2014

I Want Just One Night

Remember that play group I was a part of when TJ was a baby?  Those amazing ladies who held me up when TJ was diagnosed with autism?  Well, all of those babies are graduating from 8th grade and heading for High School.

We blinked and here we are.

I am amazed at the pictures of these lovely and handsome young ladies and gentlemen I am seeing on Facebook.  They grew up before our eyes, didn't they?  And it is a wonderful thing to celebrate how far they have come, and to anticipate the next chapter.

I am thrilled for these families.  I love all these ladies and these kids, no matter how much time passes without our seeing each other.

And I am also reminded, as I prepare my TJ for his own graduation (or "Promotion Night" as the school calls it), that we may not get to celebrate like these other families can.

I started planning this about a month ago, asking TJ's teacher (who I love) to write out and explain to him what Promotion Night will look like.

We talk about it in preparation.  What he will wear.  Where he will sit (not with us).  What he will be asked to do.

And while I feel like we have prepared him the best that we can, there is no guarantee that he will make it.  He has a history of not making it through special nights at school.  Middle school open house.  4th grade chorus performance.  2nd grade arts night.

And I hate to sound selfish.  Really, I do.  I know I should say "We will be happy to do whatever he needs us to do."  I will, of course, but maybe not so happily.

I really, really want him to make it through the ceremony.  And not just for him.

I want one school night to be drama free.  I want one school night without my stomach doing backflips.  I want one school night where TJ is ok.

For him, and for us.  We all deserve it.

Is that awful to say?  Awful or not, it's real.

It's this Tuesday.  Cross your fingers.  And toes.

Sunday, May 4, 2014

I am 5

I am constantly surprising myself.

I lead a wonderful life, but a life with built-in stress.  Family situations, autism, sobriety and my ridiculously sensitive nature sometimes all come to the forefront at the same time.  So when the titans collided recently, I handled things in away that surprised even me.

I regressed.  

My dear friend visited a Disney store on her trip to her home state, and brought back a pack of Muppets Most Wanted figures for me.  I almost cried they made me so happy.  Seriously.  

(See, I used to have muppet figures a long time ago.  I wore them on my college graduation cap and displayed them in my car.  For real.  Here's yearbook proof:)

So when I brought these figures home, and told my boys they weren't allowed to touch them, I started playing with them.  I posed them and took pictures.

"The Gang"

"Unsuspecting Kermit"

"Animal goes for a walk"

"TLA and they both look great in green"

"Walter - not yet 100% 'in'.  Poor Walter."

Innocent, right?  Well that didn't last for long.

"Public Pork"

"Equal opportunity frogs"

I couldn't stop laughing at my own immaturity.  Then I hid in Peter's closet and jumped out and scared him.  In my mind, hilarious!

 See???  Total regression!

And just like that, BOOM!  Not so stressed.

Laughter rules supreme.

Sunday, April 20, 2014

The Easter Bunny keeps receipts

TJ is almost 14.  But his emotional age is much younger, a typical trait of autism, we are told.  

He still believes in the Easter Bunny.  And Santa.  And the Tooth Fairy.

I've been sick so Bunny duties fell on Dad this year.  He is a saint, that one.  He did a great job, fishing the letter to the Easter Bunny out of the mailbox before it got picked up, and finding what he could at Toys R Us.  

So this morning, after TJ and Peter unwrapped heir Easter treasures, TJ asked "Does the Easter Bunny keep receipts?  I don't want this one...."

Yes, TJ, the Easter Bunny keeps receipts and put them in Mom's purse.  You're covered.

Wednesday, January 22, 2014

Why I Hate Camping

I have a vivid picture in my mind.

It is of a 2 year old blond boy, standing by the lake, throwing rocks in.  Perfectly content.  I am looking at him from the back and can't see his expression, but know it is neither smiling nor frowning.  My husband is next to me, almost in tears.  We are both watching this precious angel with a heavy heart.

This was the one and only time I went camping (in my adult life).  TJ was two and Peter was not even one.  We were with a whole group of friends on Burton Island.  We had brought over all our camping, food, and baby supplies, and were at a beautiful little spot where we set up out tent next to a lean-to.  Our friends were all spread out - at our little location were only 2 people we knew, and 4 or more friends of theirs.

We were hoping that this weekend getaway would help us forget that we were waiting on a diagnosis to tell us what was wrong with our boy.

The one night we spent on that island was awful.  It was raining and both boys were crying hysterically all night.  Peter only calmed down when placed between Sean and I, sleeping only out of sheer exhaustion.  Then TJ joined us.  The four of us huddled together and I don't think Sean or I slept a wink.

Little 2 year old TJ seemed out of sorts the entire time we were on that island.  At the time, the words "sensory integration disorder" and "autism spectrum disorder" meant nothing to us.  We just knew something was not quite right with our sweet boy who couldn't talk and got hysterically upset for no reason at all.

The next morning I exited our tent to find a hippie girl I didn't know complaining about our parenting to my friend behind the lean-to.  I remember the surprised look on their faces as I turned away in tears, exhausted from no sleep and fed up with the lack of understanding for the incomprehensible position we were in.  Immediately Sean and I seeked friendlier faces - one of our best friends (and TJ's Godmother) was in a different camping location with closer friends of ours and they knew what we were going through.  They came back to our camping location and with their help we packed up all our belongings and got back to the ferry on time to head back to the mainland. 

I know my friend at our camping location felt terrible that we left, but we were beyond reach at that point.  The thought of spending any more time with people who weren't 100% on our side was unimaginable, and Sean and I were too hurt to continue with the weekend.  We went home and cried - mostly out of fear of what lay ahead for us.

We knew what was coming.

That week, TJ was diagnosed with autism.

I look back at that image of our little two year old, happily throwing rocks into the lake, and yearn for that simplicity.  That time before we were labelled "autism family".  That time before 20 hours of therapy a week took over our two year old's life.  Before Sean and I would fight like hell for our child to gain words when he had none.  Before our one year old would be an "autism sibling", and he couldn't even walk.  Before our entire family would fight for autism acceptance and understanding everywhere we went.

Today I cringe when I hear the words "Burton Island".  I know that's silly, and I should not associate that beautiful place with such a negative experience, but I can't help it.  My stomach drops when I hear those words, and I haven't been camping since.

It could also be the fact that I hate sleeping outside.  And bugs.  I hate bugs.

Let's face it, I hate camping.

Maybe one of these days I'll try it again.  But don't hold your breath.

Friday, January 17, 2014

2 1/2 Years and the Ugliest Shoes Ever

My 2 1/2 year mark of sobriety has come and gone with no fanfare, as I didn't realize it until it had passed.  I think that's fantastic, personally, because it means I'm not so focused on it that it is front and center on my mind.  So yay me. 

Side note, lately I am obsessed with Green Apple Poland Spring Seltzer.  So, so good.

For the first two years of my doing this no drinking thing, I did it all wrong.  I was so concerned with remaining "normal" on the outside that on the inside I was anything but.  This is not any one's fault but my own, however it did effect the way I acted with my friends.  I even bought wine to have at my house when I hosted a ladies night!  How crazy/stupid is that???  I was worried that no one would come if I didn't have any booze.  Well, those days are over.  I've been doing a lot of work on this and am now getting my validation from myself rather than from others.  Which is a good thing because I always have a nice thing to say about myself to myself, which is as it should be, don't you think?

"Lauren, you look awfully cute today, and by the way, keep up the good work on the no booze thing!  You're so much fun to be with without the slurring!"

"Gee, thanks, Lauren!  You are so nice to say so!  And might I add that you have lovely taste in perfume?  You smell faboo!"

Why did it take me so long to figure this out?!?!  Eh, no bother - at least I have it figured out now.

So anyway, my friend Jenn and I are obsessed with these shoes:


A local boutique had them - LOTS of pairs of them - in their sale section and they were still over $100.  So there's no way.  But they are SO UGLY that they are fantastic and we promised each other that if one of us won the lottery we would rush out and buy these shoes IMMEDIATELY for the other. 

Aren't they awful/fabulous???  Can you see why we are obsessed?  If any of you see them for less than $100 please buy them for me, I'm a size 10.  I'll be your best friend, I swear.

Thursday, January 2, 2014

Holy Inappropriateness

Sean got a game for Christmas from my sister.  It's called "Cards Against Humanity".  It's basically Apples to Apples, but much dirtier, and highly inappropriate.  HIGHLY. 

Now those of you who know me personally know how random I can be.  Always have been.  The more random something is, the funnier I tend to think it is.  That's just me.  But some of these cards are SO random that I'm not sure if even I would have thought of them in creating this game. 

(Oh how I wish I had created this game.  It's like Laurie Berkner having my job - it so should have been me). 

(If that sounded egocentric, well, suck it.  Sometimes I'm a little egocentric).

Here are some (not so dirty) examples of cards:

Flying sex snakes



Mr. Clean....right behind you!

Vigorous jazz hands

Are you laughing?  If yes, you've either played this game and are remembering the first time you saw these paired with something that was hysterical, or you're as random as I am.

If not, well, sorry. 

And there is another card about two little people doing something, but I can't bring myself to type it.  Go buy this game.