Wednesday, May 20, 2015

1 in 68

I wrote a piece for the Washington Post recently, regarding the story of a girl with autism and her family being removed from a flight after an emergency landing, and comparing that to a personal story where we were met with such caring and empathy at a local restaurant (you can read our story here).  The whole story about the airline is preposterous and shows me just how far we have to go to achieve real Autism Acceptance.  

It blows my mind.

A fellow autism mom got in touch with me with a story about her beautiful daughter with autism who, despite having a doctor's written recommendation, was not given appropriate airplane seating to accommodate her disability by the airline.  She suffered terribly during her 10 hour flight - I can not imagine what this family has gone through.  But I do know that it is not ok.  At all.

Please read her story here and please sign a petition here to make the Federal Department of Transportation recognize individuals with autism and service dogs and make accommodations accordingly.  

With every 1 in 68 kids in our country being diagnosed as being on the autism spectrum, isn't it time to respond accordingly for these kiddos?  The disability is real, and it's time it was taken seriously by the Department of Transportation.  

For everyone's safety.  Please check it out.

Thank you!

Again, here is the link to the petition:

I Lied, but Just a Little

Remember when I broke up with Bravo TV and the Real Housewives?

I lied.  But just a little.

I still watch sometimes, but turn the channel when they get all "let's start hitting each other" or "let's show the world how mean we can be".  They do that a lot.

Anyway, I was watching the Real Housewives of New York City last night as one lady was confronting her step-father after not seeing him for 20+ years after the horrible childhood she had.

She kept saying "I'm not mad...I'm not angry....but...." and then would list all the reasons why she has every right to be mad and angry and hurt and broken.

I felt badly for her.  But I also felt really frustrated.

Now please know that this is just my opinion and everyone is entitled to their own opinion.  If yours differs, and you disagree, that's ok.  But this is what I have concluded for myself.

There comes a time when you have to take a look at the events that have made you who you are, work through the pain and anger and hurt, and let it go.  I have seen what can happen to people who are so stuck on what has happened in the past, they can not move forward.  And then it becomes a crutch, a habit, that the individual ends up building their life on.  They ingrain this hurt and anger into their entire fiber, and feel more comfortable in the role of "victim" or "survivor", instead of releasing it and facing their life without the negative weight.

I have faced many of my own struggles, and while some are definitely easy to let go, others are not.  And those are the ones I have had to really work on, as they are the ones that have the most to teach me.

And after I finally find the lesson I'm supposed to learn, I can let it go.  If I'm still feeling hurt and angry about something, I haven't learned the lesson yet and have more work to do.

For example, if I see someone I have had a tough time with, and have the urge to flip the bird in passing, instead of flipping the bird, I ask myself "what is going on with you today that you are feeling such strong negativity?"

See what I mean?

So no matter if the damage done was done in childhood or adulthood, it has to be addressed, managed, and let go.  It's really the only way to face your future unencumbered.

That's my opinion, anyway.

So to the RHONY lady who kept saying "I'm not angry..." and was clearly very angry, there is more work to do.

We all have some work to do, though, don't we?  And facing each day with a positive focus is totally worth it.

So go get 'em.  And have a great day.



Saturday, May 16, 2015

Turning Tough into an Opportunity

This morning I got an email from one of TJ's para-educators.

For those of you who don't know, a para-educator, or one-on-one, is someone who sits with TJ in class and makes sure he stays on track.  They help him so much and we would be nowhere without them.  

Anyway, the email said that TJ had borrowed a book from a teacher that he promised to return before the last period of the day.  Since TJ would forget his head if it weren't attached, lo and behold, he forgot.  And the teacher really needed that book for another class.  She asked if he had it in his backpack and could he please remember to return it on Monday?

TJ found the book in his back pack and felt terrible.  He immediately started yelling about how stupid he was.  

I calmed him down and told him he is not stupid, he simply made a mistake.  Together we talked about how everyone makes mistakes, and how he needs to apologize to his teacher for forgetting, and for the impact that had on her other class.

This teacher lives in our neighborhood, so TJ wanted to walk the book down to her house.  All the way there he talked about how worried he was.  So we did some deep breathing, until we got to the door.  She wasn't home, so we dropped off the book with an apology letter, and a promise that he would apologize in person on Monday.

Walking home, we talked about mistakes, and forgetting things.  Everyone forgets things, he just forgets things more frequently. 

His teacher later texted me, saying how impressed she was that TJ was so responsible to walk the book back so quickly, and write an apology letter.  He felt better.

I always say that whenever TJ has a tough time with something, it is his way of showing us what he needs to work on.  So instead of focusing on the fact that he forgot, I started thinking of what I can do to teach him to remember.

Then I had an idea.

"TJ, we are going to do an experiment."

"OK, mom.  What is it?"

"I am going to give you a marble.  You have to give it back to me by the end of the day.  Do you think you can remember to do that?"

"I don't think I can."

"Well how about if I write a little 'm' on your hand, so when you see it you can remember that you have my marble?"

"Write on my hand?!  It will never come off!!!"

"No, TJ, you can wash it off at the end of the day." (while thinking, note to self, this is a good opportunity to challenge TJ's sensory issues as well.  If I can write a reminder on his hand, and if he gets used to it, he won't be too distracted by it in the future!  Two birds, one marble!)

"Hmmm.  I think that sounds good."

So I handed him the marble, and wrote a little 'm' on his hand.  

He looked at it, then looked up at me with a smile.

"I got this, mom!"

As I walked away I thought to myself how far we have come.  Both of us.  If something like this had happened years ago, not only would TJ really beat himself up for it, but I would be upset for a while about his having trouble before I was able to come up with a plan of attack.  Now, he beats himself up a teeny bit, and I immediately turn trouble into opportunity. 

Hours later he and I were taking a walk together.  During our walk he said to me, "I still have your marble, mom, and I'll give it back to you by the end of the day."

We may be on to something here, me and him.

Saturday, May 9, 2015

I Remember

I remember TJ was still 2.

He had been diagnosed with autism a few months before this day.  He only said “Ba” for ball,  “Da” for dog, and “Ma” for no.  

He was immersed in so many different therapies and programs - most of them taking place in our home.

I remember I was tired.

Peter was 1.  How I wanted to go for walks, go to playgroups, go to Mommy and Me classes.  But I couldn’t.  Our entire day was scheduled around these therapies.  

I was playing with Peter in the living room, I remember.  TJ was upstairs in his room with Diana, our first Discreet Trial teacher.  It’s a one-on-one therapy away from distractions where the teachers use a reward system to teach things like emotions, colors, letters - everything.  

Parents were not to be present during their work.  I listened through the baby monitor so I was in touch with what he was working on.  :)

I remember being busy with Peter that day and I wasn’t being my super stealthy listening self.  We were playing and giggling when TJ and Diana came down the stairs.

“Mom, TJ has something to say to you…”

Wha….what?  My heart stopped.  Something to SAY?

“Hi, Mom,”  TJ said simply, with a smile.

Even today when I remember this moment, I am overcome.  Overcome with pride, with surprise, with joy.  

Overcome with hope.

Now my TJ is 15 and Peter is 13.  TJ talks all day every day.  We have many more good days than bad, for which I am so thankful.

But every now and then, if I get a case of the “poor me-s” or if we are having a tough day, I remember those 2 little words that gave me so, so much hope:

“Hi, Mom.”

Happy Mother’s Day to all of you.  I hope your day is filled with love, with joy, with surprise.

And with hope.


Tuesday, May 5, 2015

15

Today is my TJ's birthday.  He is 15.

15!  I can't believe it!

I was lucky enough to go through my first pregnancy at the same time as one of my dear friends.  We lived near each other, and our husbands got along, so it was kinda great.

Our babies were due around the same time so it was really wonderful to have someone to compare notes with.

I remember when Sean and I were in the hospital to have TJ, I said to Sean "Wouldn't it be funny if A and P were here too, somewhere on this floor, to have their baby?"

About 10 minutes later when Sean came back from getting me something to drink, he said "Lauren, A is here.  I just ran into P in the hallway.  She is in the room next door."

Next door!  Can you believe it?

Now I had pre-eclampsia so I was hooked up to a million different tubes and things, so a few minutes later A and P came by to visit.

I was so happy our kids would be born so close to each other - literally.

Now I'm not going to get too detailed, but when it came time to push, I was not quiet.  Holy pain.

Later I learned that A could hear me and I scared the crap out of her.  I still feel badly about that to this day, although I will admit it's kinda funny.  Sorry sweetie!

Anyway, we both had boys, and the next morning, TJ met his first friend R.  So not only was it wonderful to go through our pregnancies together, it was wonderful to go through our first kids' first years together.

Every year on TJ's birthday I think of them, our friends A and P, and every year I smile at those memories.  How lucky I was to have such a good friend be a part of that wonderful time with me, and how lucky I still am that they are always a part of TJ's story.  We are still good friends today, 15 years later.  We no longer live near each other, but every year at this time A and I touch base and share our memories with smiles and love.

So Happy Birthday TJ, and Happy Birthday R.  We are proud of the amazing young men you are.  And to my dear friend A, I am so, so glad we have this story to share every year.

Friday, May 1, 2015

HELP! I Need a Name!

A friend of mine sent me a message this morning about my blog.  She said she enjoyed reading it, but didn't think the name "I don't have a job" was a good name for it.  I created this blog 3 years ago (!!!) when I quit my job working as a para educator, hence the name.  It was so stupid of me to even take this job in the first place because no one in their right mind would believe they have enough energy to work with special needs kids all day, and then go home to take care of your own special needs kid.  Live and learn.  Anyway, I trust this lady as she is a smarty and has a great sense of humor to boot, so I started to think about it.

She said "it's not true. you DO have a job, an important job, an "alternative" job, a job we don't "pay" for in this country but....you do in fact have a job. So... just wondering if you would consider a change because...somehow when I read it...it sounds like you are sitting home eating bon bons, or shopping or something and we KNOW that isn't true."


She is so right! I certainly am NOT sitting home eating bonbons (Mmmmm....bon bonbons!) or shopping or going to nail salons.


I am taking mental pictures in the morning of what my kid is wearing so if he bolts from school I know what to tell the police.


I am wondering if Peter is handling the tough kids at school who target him because he is sensitive and kind and vulnerable because he so often feels like he is playing second fiddle.

I am emailing with TJ's school team about an upcoming something or other so we can prepare him for any "zig zags" in his schedule that could throw him completely off.

I am making sure the house is stocked with food for my boys' very individual tastes and preparing to introduce a new food to TJ, one bite at a time, to challenge his sensory issues and expand his tiny food repertoire.

I am making extra runs to the schools to bring my boys their binders or glasses or retainers or lunches or snacks or books or projects or homework that they forgot at home.

I am trying to keep up with the tasks of the house so my family has clean clothes to wear and don't smell stinky.

I am driving to and from school, appointments, soccer practice, car upkeep, dropping off and picking up that every parent experiences in balancing their family's ever changing weekly schedule.

I am trying to squeeze in exercise time for me so I have some stress relief and don't lose my mind.

I am tackling personal family issues that you will never find me writing about here out of respect for those so dear to my heart.

I am writing.

So - what do you call that??? Is there a job description for that? I have no idea what I would call it.

I DO have a job. I have a LOT of jobs! I just don't know how to put that into a cute clever little blog title.

I'll work on it - in the mean time if you all have any suggestions PLEASE let me know! I'd love to hear from you!

Also, if the blog title suddenly changes, you all know why.

Off I go - have a great day!



Thursday, April 30, 2015

Meanwhile, during the ride home from school.....

"Hey TJ, guess what?"

"What?"

"Your case manager sent me a message telling me that you have no school on May 11th!"

"WHOA!!!  That's great!  I can't wait to tell Peter and see the look of jealousy and despair on his face!"

Wha.....?

Sibling rivalry is alive and well in our house.  Who said kids with autism aren't in tune with their feelings?  Seems to me TJ is tuned in just fine.  Maybe a little too well.....