What Will the New Year Bring?

When my son was first diagnosed, one of our therapists put me in touch with another Mom who was further into their journey than we were.  It was an opportunity to connect with someone that once stood in my shoes.  They were also well into the ABA therapy program that we were looking into.   I was raw and sad.  I didn't know what to expect.  I didn't know what to ask.  I just knew I needed help and understanding from someone that had been there.

It was a nice meeting in a coffee shop.  I don't think I cried, which at the time was a huge accomplishment.  We talked about therapy.  We talked about other networks to connect with Autism families.  But one thing that that stood out to me was she wasn't sure when she should tell her son he had Autism.  He was doing well.  He was mainstreamed in school, played soccer on the weekend, and overcame a lot of his earlier struggles.   But her biggest worry at the time was explaining to her son he was different and labeled.

At the time I could not relate to that problem.  My son wasn't talking at all!  Having to explain to him what autism was seemed liked a daydream.

That was over four years ago.

Now I find myself on the other side of the coffee table.
I'm being called and asked questions about therapy, what worked for us, and to be the person that once stood in their shoes.  And I'm honestly flattered that other people are asking me the questions I had when I felt so alone.

Except our journey continues.  We are just at a different crossroads further along the path.  And now I wonder... when will I have to explain what Autism is to my son?  I think that day may be soon.

Our therapy looks so different than what it looked like when we started.  And we've started to adjust to JJ's needs.  Instead of "table times" and learning to speak, he needs more play dates and peer play.  He still struggles socially with peers.  But he is getting so much better with it.

And it makes me wonder what lies ahead.  How will middle school and high school be for him?  Will he continue to have friendships?  Will he find a sport, music or art form that he becomes passionate about?  Will he ever learn to ride a two-wheeler?  Where will he go to college (because I KNOW that will happen for him).  Will he always live with us?  Will he always want to?  What will he be when he grows up?

And guess what.... these are questions ALL parents ask themselves for their children.  Not just Autism parents.  When did we get here?   When did the tables turn?  It all seems like a blur.

So while this year comes to a close, I wonder what the New Year will bring for our boy, for our family, and selfishly, for me.  I hope that other families continue to feel comfortable to continue calling us... because one day they too will be on the other side.  And it feels good knowing I can be a small part in their journey, just as others have played a small part in ours.

Happy New Year All!

An Apology to anyone who stayed at our Holiday Inn Express

This is an apology letter to anyone we may have woken up between the hours of 4 and 5am this morning at the Holiday Inn Express we stayed at last night.
No one was dying.
No one was drunk.
No one was being beaten.
It was just our son being dragged to the car to catch our 6:30am flight back home.

Let me back up a bit.

We took a long weekend trip to upstate NY for celebrate my Mother-in-law's 80th birthday.  It was to be a very low key weekend, but did require us to take 2 airplanes to get there with limited  flights.  So we did what we always do... prep for the worst and hope for the best.  We wrote a social story about the trip.  Prepped the boy as best we could, and off we went!  Mike and I were both a bit leery due to our son's recent behavior.  Meltdowns, tantrum and overall non-compliance has been the norm the past few weeks.  But things were settling down, so maybe we would get lucky.

The trip there was perfect.  Flights on time, good kid that listened well, bags retrieved from being checked-in.  All was well.  JJ was so excited to be in New York, He was so happy to see his Grandma, Aunt and Uncle.  He even loved our rental car and hotel room.  It was a very relaxing few days.

On Sunday night, we did cake and candles for Grandma.   Her birthday is actually on Wednesday, but we were not going to be there at that time.  This was not overlooked by JJ.   He FLIPPED OUT when we sang "Happy Birthday" because it wasn't really Grandma's birthday.  And he wanted to sing a different birthday song, but no one knew the song he wanted to sing. We knew we were treading into dangerous territory, so we hurried ourselves up and got back to the hotel room to get some sleep.

He knew we had to get up early.  He was telling us all weekend that we would leave at 4:45 and that we would wake up at 3.  It was in the book.

No dice.  4am rolled around.  Mike and I were getting our stuff together.  JJ would not move from sleep.  Like a sleeping Giant, if you will.  We cuddled him, and gave him kisses.  Rubbed his back and talked smoothly to pry him from sleep.
All we got was "No!  I want to sleep all day.  We will go home tomorrow."
We set the timer to get him moving into his daily morning routine.
We begged.
We pleaded.
We bribed.
We wrote more books.
We negotiated a 4:46 departure time.
We did everything we could.  I even told him he could go to the airport in just his underwear.

So you see, we were getting no where.  I had to pick him up.  It was 4:47 after-all!

He screamed like bloody murder.  He wanted his clothes on.  We put them on.  He wanted different pants.  All the pants were already packed away and in the car.  His negotiating was not getting us anywhere.

So I grabbed him, hoisted him up as far as I could.  Mike scooped everything up from the room.  And JJ just screamed as we went down the hallway, into the elevator, down the elevator and into the lobby.

He screamed like I was killing him; taking out his toe nails one by one.   But we just had to do it.  We had to leave.

Thankfully the front desk guy was so nice.  He told Mike not to worry, the hotel was not that full, and he had a little one at home too.  Mike asked, "With Autism?"  The guy said, "No.  But I know how kids can be."

We got him to calm down in the lobby, changed his pants, and made our way.  He walked out on his own accord to the car...no need to carry him.  In the dark on the drive to the airport, I held his hand... me in the front seat, him in the back.  He whimpered.  He said, "I am sad.  I was crying."  And then he relaxed, looked out the window and said, "It is dark.  Soon the sun will be peaking up!"

At this point, we knew we were OK.  Our boy was back from him tantrum and was so much better.
That's when I cried.

Not because it sucked (because it did.)
Not because I was exhausted (because I was).
I cried because he is so tortured, and there is nothing I could do in the situation but to physically move him.

He has made so so so much progress in the past few years, but it was one of those times that remind us that yes, he has Autism.  And it is not easy.

And we will never, ever, ever book a 6:30am flight again.

PS.  We made it home without further incident.  We are so glad we all made it home in one piece. Now off to schedule that massage appointment.

PPS.  If you are reading this, and we did wake you up, please know a donation is being made to an Autism charity in your name. And we are really sorry!

Mother's Day

"I don't know how you do it."
"It must be so hard."
"You have an extra hard job."
"It takes a special person."
"G-d doesn't give us more then we can handle."

When I hear these comments, I know they are meant with love and respect.  I know this.

But they can be said about any mother.  Not just me.
I can say the same comments to the Mom's out there that are potty training their toddlers.  Or the ones who have extra, super, outgoing kids.  Or those who have kids who might be a little more shy then others.  Those dealing with newborns or teenagers.  Mothers of all kinds.

My friend Jody used to say, "Every kid has something."  Ours happens to be Autism.

Autism is a part of our lives, yes.  But so is work, music, exercise, laughter, love, back pain, families that live far away, food, and more.

I'm Jonathan's Mom.  And yes, when we received an Autism Spectrum Diagnosis over three years ago, I was very sad.  But Mike and I both have unconsciously decided to roll with it.  Not let it define us.  Jonathan has taught me to be a flexible Mom. To not expect anything, and enjoy every little thing.  To laugh at all the funny things.  To stop and smell the roses.  To listen with open ears and love with an open heart.  To understand that everyone has something that makes them different.    He is my greatest gift, one that give back to me everyday.

And I know I'm not alone in how I feel about being a Mother.

Just like Autism does not define my son, it does not define me.

<3 <3 <3 

April is Autism Awareness Month

Today marks the official kick-off to Autism Awareness month.  Tomorrow, April 2nd is the Autism Speaks big campaign to "Light it Up Blue."

April also marks our one year of having an "official" diagnosis for Jonathan.

But I've been thinking a lot about Autism Awareness.  When was I first aware of Autism?

I think back at my childhood.  Did I know someone with Autism?  Was it called that when I was growing up?  I know there were some kids that were a little different.  Then there were the special needs kids that were in other classes too.  There was the non-verbal boy in middle school that won the school talent show for dancing like Michael Jackson.  He would practice his moves at lunch time.  His name was Chris.  And he did have moves.  But did he have Autism?

I also think about a special needs girl, Tiffany who could remember your name and face in an instant.  When she walked down the halls at school, she would wave at everyone and saying hi to each person by name.  Her aids always were prodding her on, because she took a while making sure she said hi to everyone.  She always was smiling and had a childish joy about her.  I remember I saw her years after we graduated.  I walked past her, and I heard "Hi Jen!"  It may have been five years since the last time I saw her.  But nothing changed.  Did she have Autism?  I don't know.

I remember hearing about Jenny McCarthy's son and Holly Robinson Peete's son in the media.  But really, it is like the word "Autism" just hung around in the air...sneaking up here and there in various conversations and news reports.

I don't know when I became aware of the WORD Autism.  But I know when I became aware of the MEANING Autism.   It was a feeling...long before it became officially attached to my son.  A nagging hum. A buzz in the back of my head.  A small feeling in my gut.  No other way to explain it. I tried to fight it off, but the hum, the buzz, the feeling grew louder. 



A new CDC reports that 1 out of 88 US children are on the Autism Spectrum now.  If that statistic doesn't make us AWARE of Autism, then I don't know what will.  1 out of 88.  Last year it as 1 out of 100.  And not too long before that it was 1 out of 150.  It's not just a handful of kids you remember from your childhood anymore.  It's your neighbor, your cousin, your kid's classmate, your nephew or even your child.

I look at my son, and I don't see Autism.  I see Jonathan.  (OK, some days I see Autism, but mostly I see Jonathan.)  Autism is a part of our lives, whether we want it to be or not.  And while I don't want Autism to be the definition of my son, it will be attached to him in some way, for better or worse.

Autism Awareness Month should be about the meaning of Autism, which is far more reaching than just the word.