Life on the Spectrum

Two years ago, Eric and I had an opportunity to see Temple Grandin speak at Old Colony Regional High School in Rochester, MA.  A few of the teachers from the South Coast Educational Collaborative had seen her speak and highly recommended going to see her.  I’m glad we did.

But if you know me at all, I had to read everything about Temple.  Even worse, I watched the HBO movie entitle “Temple Grandin” on top of just about every YouTube video ever posted.  I was ready.  I had no idea I would leave Old Colony’s gymnasium completely mind-blown.

Let me say this first, for any parent, when you have babysitting, you take advantage of every last second.  We dropped the kids early at my mother’s house and headed to Rochester for 10 am.  Good thing we arrived 45 minutes early to beat the rush; it was open seating, after all.  There wasn’t a single car in the parking lot when we arrived.  Eric and I both thought maybe we were supposed to be at Old Rochester Regional…nope…this was it.  We went in.

There’s something kind of cool about large gyms that are empty and unlit.  We were the first two there with the exception of one other person sitting in the third row.  Figuring it would be kind of impudent to snag seats in the front row, we sat behind the person who was already seated.  They were bent forward with their head in their hands, obviously deep in thought.  We tried to respect their contemplative silence.  I can’t ever be quiet.  I don’t have it in me.  I jibber jabber.

As it turned out, it was Temple Grandin herself sitting in the third row.  She stood up, fixed her handkerchief that was tied around her neck and then said, “I’m supposed to introduce myself and then people want to take pictures with me.  Take your picture now. I’m Temple Grandin.”  I loved it!  Stupidly, however, I put my hand on her back when we awkwardly posed for a picture.  I could feel her bristle.  It’s like taking a picture with Tommy.  I know better, I don’t know what I was thinking.

Once the auditorium was packed and the talk began, I quickly realized she scripts.  Stick to the script.  I didn’t learn much from what Temple Grandin said that morning, but I learned a great deal about how she thinks, scripts, interacts and tries to function in a neurotypical world.  There was so much to be learned in this short hour and a half.

The presentation was verbatim per YouTube and I was okay with that.  But nothing could have prepared me for the question and answer session after the talk.  Temple Grandin, like so many others who are autistic, have great difficulty veering from the script.  Her responses to audience questions was nothing short of awesome!  I’ll highlight three of my favorite exchanges.

First, a teacher from the Middleborough district stood and asked a question.  I can’t remember what that young teacher asked, but even she could not have anticipated getting lit up, I mean flamed, in front of that packed field house.  Temple asked her why she wore an “Autism Awareness” t-shirt with “Nichols Middle School” sprawled across the back.  I died.  Temple went on to explain that wearing t-shirts don’t do anything.  Anything.   Ms. Grandin went on to ask what the teachers were doing.  Gahhh, this was great!!!  Tell me what you do, not that you know there’s a problem.

Second, someone I know, I won’t say who, asked Temple Grandin if she had any advice for the siblings of children with autism.  Eric, that question was not part of the script.  Stick to the script!  If only he had watched the movie and all the YouTube clips.  Temple did not answer the question, at all.  I can’t recall her response, but she demonstrated that she does not have the ability to think flexibly (if you know what I mean) and conversing on the fly is not likely.  I know a little boy who is very similar.  Eric had been fooled, as were other members of the audience, by Temple Grandin’s ability to talk you through a narrative that is well rehearsed.  After that, it’s close to over.

Lastly, I roared laughing when Temple exposed the superintendent of Old Colony Regional by listing all the medications he was currently taking and the dosages.  According to Temple, he told her his medical history in the car ride from Logan Airport to her hotel in Raynham.  How that comes up in conversation, I’ll never know.  That poor gentleman jump up, leapt over three people, and adroitly grabbed the microphone, but to no avail.  I already had gasped loudly enough to make folks turn and look at me.  Out of complete empathy, I laughed hysterically.  In our house, Tommy doesn’t keep secrets.  He has no filter, speaks loudly and struggles with boundaries.  Trust me, it’s not out of malice.  I was glad someone else was eating a piece of that pie, as terrible as that is.

When I left Old Colony that March morning, I was in fact, mind-blown.  It was humbling to meet someone who has faced so much adversity yet overcome and accomplished so much in spite of their disability.  I haven’t been able to go see Temple Grandin speak again since then, but I intend to.  I know the story.  As empowering as it is, the greater story is that you experience how hard she works to live in our world while trying to invite you into hers.

Last summer, we took our annual Fourth of July trip to Disney World.  Again, we travel in a pack; there were at least 10 of us last year.  Our party included Cat, her two daughters, her niece, Grandma Jean, my mother, Will, Tommy, James, Ken (my brother) and me.  We also were excited to see Tommy’s preschool teacher and her family who were vacationing at the same time.

Disney is the Happiest Place on Earth and we already know how much Tommy HATES to leave.  When we arrived on June 27th, we took comfort in knowing we had at least 3 or 4 days of solitude before we had to begin the preparation to go home 3 or 4 days after that.

The very first full day we were at Disney’s Old Key West, we decided to hit the main pool for the morning/afternoon and then go to one of the parks later in the evening.  It was hot.  This time we had rooms that were a 10 minute walk (at a leisurely pace) from the main pool, but there was a quiet pool right outside our back door, literally.  Did any kid, including the teenagers with us, want to go to the quiet pool?  Of course not.

Delaney, Tommy’s former teacher’s daughter, got a jump on the walk to the main pool with Tommy in the stroller.  Yup, Tommy still hitches a ride in a stroller when he can; his legs are little and not too strong.  I wasn’t far behind with Cat and the rest of the crew.  As we approached the main pool area I could feel myself begin to decompress.  The pool area at OKW plays Caribbean music.  The palm trees provided a fence of sorts around the area, but I could hear the splashing of water from the big water slide and most of all I could smell the chlorine.  All I needed was a Turtle Krawl from the Gurgling Suitcase pool bar.  My serenity was abruptly interrupted by an ear piercing screaming that I immediately recognized.  Tommy.

From around the corner, Delaney came running toward me with Tommy in her arms.  He was hysterical.  He had just gotten stung by a bee.  Tommy’s got enough medical problems and allergies and this was new territory for us.  I froze.  Delaney looked me in the eye, after grabbing my attention, and told me to 1) grab the stinger from Tommy’s ankle and 2) get help.  Thank God she was calm.  Me, not so much.  Tommy’s screaming drew the attention of resort managers and lifeguards who ushered us into the Community Hall.  Tommy was hysterical and his legs were bright red…the red swelling was moving up his body.  The manager called 9-1-1.

Through his screaming, Tommy wanted Grandma Jean.  Delaney, ever the athlete, sprinted barefoot across the hot Florida pavement the 2/10 of a mile back to our room with a manager on their golf cart in pursuit.  Before I could blink, Jean was there.  The EMTs were there too, with their stretcher and whatever else they carry.  “Mom, I don’t know if I’d worry about the sting, that’s the worst sunburn we’ve ever seen.”  Sunburn??? I just stepped foot into the ultra-violet rays of the summer.  “That’s NOT a sunburn!”

“Mom, does he have an EPI-pen?”  Through my own tears, I panicked and explained that he does, for food allergies, but I forgot it at home…in MASSACHUSETTS!  How could I have done that???

Then the EMTs asked me for a medical history.  Uh, how much time do you have?  FPIES, hypogammaglobulinemia, blah, blah, blah, and oh, he’s autistic.  “Does he take any medications?”  How much paper do you have?  “Does he have allergies?”  HA! YES!  While I was freaking out and trying to call Eric, a manager came back with Benadryl from the sundries store.  Every medicine Tommy takes goes through his g-tube.  Tommy was so hysterical and jumping all over the place.  It’s not like I have a syringe on me to give him the Benadryl and he can’t swallow it from the tiny measurement cup that comes with it.  He wouldn’t be able to take it by mouth on a good day, let alone while hysterical.  We had no choice, two strapping EMTs and I held a then 6 year old down while Cat tried to gently pour 10 ml of Benadryl into his mouth.

Poor Cat, what a good sport.  She always ends up right in the middle of our Disney episodes.  This was right up there with the airport flip out.  While Tommy thrashed his head around, she tried to pour.  Did it get in his mouth?  Nope.  Not one single drop made it.  The Benadryl pooled in his eye socket before Tom flipped up and sent the pink medicine shooting down Cat’s t-shirt.  She was horrified.  It actually made me snap out of my own panicking.  “Cat, he doesn’t have itchy eyes!!!”  We didn’t laugh then, but we howled that night once Tommy was fine.

Fortunately, Tommy didn’t have take a ride in the ambulance that day.  An EPI-pen was called in and I UBERed myself to CVS to get it.  Lesson learned; I don’t go ANYWHERE without that pen.  Fun fact: bee venom is protein.  Tommy’s allergic to protein.

What are the odds of Tommy, of all the people at the pool, getting stung that day?

Eric and I took just the boys back to Old Key West in August.  On our first trip to the main pool, guess who got stung again!  The pool has a giant waterslide that is housed inside a giant sandcastle.  There’s a spiraling staircase you climb up two stories to the top.  There had to be 25 kids inside that sandcastle.  Tommy’s recognizable screaming echoing inside the fiberglass Mickey shaped structure sent Eric and me running.  What were the odds?  You can’t fathom how terrible we felt that Tommy has such horrible luck.  Is he a bee magnet?  Did he have yellow jacket pheromones?

The next day, we reluctantly went to the pool so the kids could play on the waterslide.  Tommy doesn’t necessarily have bad luck after all.  He doesn’t have yellow jacket pheromones. Tommy chases bees.  He saw a bee at the pool area and he became the kamikaze.  I never saw anyone charge at a bee like that.  At one point he was trying to stomp the bee with his bare feet.  That bee gave him the what- for.  That’s why he got stung a second time and now almost a third!  He still doesn’t understand to STAY AWAY.  I’m fully prepared now.

Eventually we found the solitude we were looking for on that Fourth of July vacation.  Delaney was the unsung hero.  If your eyes are bothering you, Cat’s got you covered.  84 more days until we’re back.  Disney should consider themselves on notice. LOL.

 

It’s April 2nd, International Autism Awareness Day!  I wore blue today.  Actually, I wore blue floral and it wasn’t intentional.  Will and Eric wore blue, subtly and also coincidentally.  Tommy wore green.  He said he’ll do it tomorrow.  He says he’ll do every non-preferred activity tomorrow.

Will and I had to make a quick 4 hour trip to Mass General last night.  He needed stitches in his face…again.  He’s a klutz.  He actually got glue this time, but that doesn’t matter.  (Side-note: Will skis black diamonds, but breaks his face when getting up from his desk at school.  He kills me.) When we left the ED, there were police cruisers parked in front of the main entrance to the hospital with their blue lights flashing.  Because I’m so shy, I asked why.  They were happy to inform me that April is Autism Awareness Month and they are lighting it up blue to show their support for respect, acceptance and awareness.  How cool is that? 

I was back at Mass General early this morning (that’s for another day) and there the cruisers were, still out there.  I love it.  I appreciate everyone we see there.  A few more specialists have been added to Tommy’s existing lengthy list.  But, even the seemingly insignificant people we encounter there are rockstars.  For example, the valet attendants are the first folks we see when we arrive on campus.  They have the ability to set the tone of our whole experience.  Without fail, when I roll up, the attendants always ask about their “main man T.”  They’re also amused by James and his “mean mugging” face (Tom’s not).  I suppose because I have been going to MGH so often for so long, 7 years long, that it feels kind of like home.

It’s also not lost on me how lucky we all are to live so close to the medical mecca of the world.  I know there are so many children who do not have access to adequate healthcare due to location, finances, crippling and inequitable health care coverage and it troubles me greatly.

I do believe there is a paradigm shift.  Attitudes are changing.  I may have a biased lens, but folks seem to be more accepting.  At the very least, more and more people are aware.    What more can we ask for, right?

It’s April 1st and the kick-off of Autism Awareness Month. I started this month, week actually, out right with Sunday morning Mass with Will and Tommy yesterday. I wish I had strapped a GoPro to my head so everyone could’ve seen what I saw. There’s just no way I can do it any justice.

Will’s in second grade and Tommy’s in first. Theoretically, it should be the same for CCD or whatever it is they call it now. I held Will back a year for several reasons. First, I had to shop around for a parish that was user friendly. By that, I mean flexible; realistically Tommy can’t handle CCD every Sunday morning. I needed to home school him (wink, wink). Second, Will wanted to go through this experience with Tommy. Will genuinely wants to help, so I let him. Third, and probably the biggest reason, I wasn’t sure I wanted to introduce Tom to something that’s abstract. He’s a concrete kind of guy.

Over the course of the year, Will went to Sunday morning classes alone and then we talked about whatever the topic was with Tommy. Tommy could not care any less about any of that. Several weeks back, the two teachers in Will’s class asked me if I would try to bring Tommy. They assured me if it was disastrous that we could go back to home schooling. I agreed. Everything went great! The only snafu was Tommy wanting to know why the man was in a sling shot. Huh? Oh! That’s Jesus on the cross, T. I digress.

Next week is the last class of the year, much to the boys’ chagrin. They genuinely like going (I never did, but it’s a rite of passage. Besides, they need things to talk about in therapy when they’re older). But this year wasn’t going to end without a Mass sponsored by the 1st grade.

Sponsored? Say what, now? Ummm, you want Tommy to do what? Read at Mass? He’s going to sing, too? Ha. Good luck!

Will nailed his reading at Mass. Of course he did, he’s Type A. His singing was on point and his hand gestures were well choreographed. When I watched him read from the pulpit, I saw a glimpse of a boy much older than eight. He makes me so proud.

Then….it was Tommy Pickle’s turn. He couldn’t stop moving the entire time he was on the altar. He usually stims by jumping up and down. Yesterday, he rocked back and forth the whole time. He looked everywhere; up, left, right. It was dizzying to watch. His hands flapped or he kept them in his pockets. But he looked angelic in his shirt and tie. He’s in the 3rd percentile for height and cute as a button. He’s truly a gift from God, I thought to myself.

Each time the children had to sing or join the others on the altar, I braced for impact. Tommy can be an unknown variable. Jean grabbed my knee each time one of the kids was about to read or sing, or when Tommy wanted to know where all the money came from after collection. We both put our heads down so no one would know we were giggling at a few points.

When it was his turn to read, I held my breath. “For all those who are ill, we pray to the Lord.” That line hit me hard. If anyone needs a prayer, it’s T. He nailed it! But then he froze. For a split second I thought he was going to blurt something out. He did, a very faint “help.” Tommy newly wears leg braces. He was stuck up there. Can you guess who rescued him? His big brother, Will. It’s second nature to that boy to help. Will is quiet about it and never wants accolades.

After the reading, all the boys and girls sang, again. Tommy went right back to rocking and looking up as the sun shone through the big stained glass windows. He knew all the words, though, and he sang the loudest and proudest!

Before Mass ended, Tommy burst into tears and freaked out. He realized there were loads of people in the church and it frightened him. I was happy to have him run to me so that I could squeeze him. He made me proud and my heart felt like it was going to burst.

When Mass did end, a few folks trickled up to see me. Some of them were parents of former students, some were former students and the others were total strangers. Each of them were incredibly kind and smiled at Tommy’s pure innocence (he’s not THAT innocent). I knew what they meant and their sentiments are appreciated.

Jean put it best, “if they don’t love you here, forget about it.” She’s right. I’m glad I shopped around.

Happy Autism Awareness Month.

A month ago I signed us up for pictures with Santa through Ticketmaster.  For every parent of a child with disabilities, getting tickets to see the man in red suit is exclusive.  This ticket is, anyway.  Autism Speaks sponsors sensory friendly Santa at various malls throughout the country.  We live 25 minutes from one of them.  Our reserved time this morning was 8:15 to 8:30.  That gave us 15 minutes for Tommy to stim, check out all the surroundings, ask Santa what his favorite bridge is, and find just the right spot to sit on the green cushy seat next to the big guy.

When we first arrived at the mall, I wasn’t sure I had the date correct.  There were hardly any cars and the lights were clearly off.  We did find the correct mall entrance, thanks to a courteous mall cop, and were pleased to find we were one of three families there to meet Santa in an environment as stress-free as possible.  The mall lights were off, there was no music, and there weren’t hundreds of people talking, laughing or crying.

I was also impressed by the array of donuts, cookies, coffee, coloring pages and activities for children.  James was, too.  He had a death grip on a glazed munchkin in approximately .25 seconds of walking up on the scene.  I digress.  Santa couldn’t have been more patient or understanding.  He made sure to stay eye-level to Tommy and even knew to help squeeze Tommy as Tommy was delving into the personal architectural preferences of eight, no nine, reindeer.

For the first time in six years, Tommy didn’t cry while having his picture taken with Santa.  But for the first time, I did.  The marketing director of the Simon’s Emerald Square Mall was on hand running the quiet show this morning.  She spoke in whispers, as did the photographer and Santa’s helper.  I could barely speak because I had “the lump” in my throat and I could feel myself getting weepy.  I did manage to get my business together and thanked Santa a bajillion times along with his elves.  I hugged him, too.  He reminded me of the Christmas magic we lose as adults sometimes.

Once we got the boys back in the car, I got behind the wheel and had to take a minute to collect myself.  It was down pouring this morning.  Tommy can’t stand the feeling of rain on his skin or scalp.  That’s not unusual for children with sensory issues.  In fact, it can be painful for them.  The marketing director suggested we move the car right up front to avoid a longer traverse through the rain.  How’d she know?  So, I asked her.  She said she read as much as she could about autism and Autism Speaks to help provide a better experience.  Whhhhhaaaattttt?  She also said that if I can’t get a ticket for the Easter Bunny, to call her office and she will make an arrangement for photos for Tommy.  Whhhhhaaaattttt?   I instantly felt guilty for shopping online.  I don’t want to put this girl out of a job!

I wasn’t going to add to this blog (so I thought).  This morning I was so overwhelmed and on the verge of momentarily ugly crying.  I suck it up every day to do what I have to do.  Today’s weepiness was a culmination of daily worries about Tommy’s health and the navigation of autism.  Eric and I plow through each day going to appointments, therapies, etc.  This morning, long before the hustle and bustle of Christmas shoppers storming the mall, we got to share a magical moment with perfect strangers (except Santa, of course) who for 15 minutes, took a load off our shoulders.  They reminded me to believe.  I believe in the good in people.

Remind your kids: there’s no crying at Santa!  I do that.

Today’s the last day of April and my last post.  I didn’t expect to be disappointed, but admittedly I am.  There  were days where I didn’t know what to write nor have the time, but now that I’m at the end, I feel there is so much more I could say.  I never got to writing about about Halloween.  It was years before Tommy would put a costume on.  Last year he was the Solar System thanks to one of our biggest supports and cheerleader who we love endlessly.  I didn’t tell you that I had to be taught, I’m mean literally shown, how to parent and care for Tommy.  We rely on his school and his teachers in ways I’ve never imagined; and we’re in education.  There are nurses who kept telling me I could when I thought I couldn’t.  My brothers Jay and Ken are some of my biggest fans.  They tease me just as much as when we were kids and I need that normalcy.  I’m not sure if I articulated enough just how much I rely on my mother, I’d be sunk without her.  I can never repay her for everything she’s done for Tommy not only as a nurse, but as my backbone.

I’ve thought a great deal about how I would end this blog.  I would be remiss if I did not admit that part of my motivation for writing it initially was out of anger and hurt.  Per my April 2nd post, I don’t support students with special needs being exploited for personal accolades, fundraising, PR, hashstags…I need not go on.  And as I stated, no one has asked for my opinion.  My anger and hurt was not entirely on behalf of the special needs student, but for the army of people who support him each and every day.  That child has a mother and if she is like me, her rational mind and her heart don’t match up.  I know in my rational mind that this is not my fault.  My heart tells me differently and I will carry that guilt with me.  Parenting is hard work and under these circumstances that is tenfold.  I also know that there are so many who support Eric and me.  We work with some phenomenal people who show the same love and respect to their students that Tommy is shown in his classroom.  Many of you are reading this right now and I thank you as a mom first and foremost.

We collectively have an opportunity to change culture.  I hope by opening up and sharing my experiences that I have helped to do just that.  I love my son endlessly and I want him to live the most enriched and meaningful life I know he is destined to live.

Many of you have sent encouraging messages and comments.  I am truly humbled by your outpouring of support.  Many of you have said that I am an inspiration.  I’m not.  I haven’t done anything any of you would not have done.  You may be living a similar life and if that’s the case, I hope you can see yourselves in this and know you’re not alone.  I have been fortunate enough to have some of the most amazing people in my life.   I like to think I’ve been shaped by some of the greats.  Lessons have not been lost on me.  This is especially true for the other strong women in my life.  But there are others.  Among them is Eric.

And lastly, to my Tommy Pickles: you have made me a better person.  Before you were born, I thought I knew true unconditional love.  I did not.  You have brought so much love to Daddy and me through all of the people who have come into our lives to help support us.  And yes, I do believe it has happened for a reason.  You may not be able to tell me you love me, yet, but I know you do.  You teach Will and James to be patient, open, loving, and judgement free.  I trust that will continue.  This isn’t the trip I signed up for, but you’ve been an amazing guide and I wouldn’t trade it for anything in the world.

To those of you who took the time to take this journey this month, I thank you from the bottom of my heart.

Much peace and love.

~Leigh

 

Yesterday, the Boston Red Sox raised money and awareness for Autism Speaks.  So, along with my tribe (part of my Mom Tribe that is) we went.  I printed out the accompanying social story and Tom read it countless times.  Before we got in the car to go, “am I playing at Fenway today, Mom?”  Tom, we’ve read the story how many times?

In fairness, his Challenger League baseball team is the Red Sox.  I’ll cut him some slack in this one.  It’s the first time I’ve been to Fenway with the boys.  They were so excited! Tommy LOVED that there are numbers everywhere: the rows, steps, signs, seats, scoreboard! He was in heaven.

Overall, it was a great day.  Even though I brought his noise cancelling headphones, the Bomb didn’t need them. He went nuts at every hit, he danced to the music, and he made people around us lean forward so he could see the number on their seatback. Not every outing is tough.  The problem is that we never know which one will be.

I was pleased to see so many kids and adults with special needs enjoying a day at Fenway Park surrounded by people who love them unconditionally.  It’s the kind of day you don’t want to end.

Moreover, I love being with the other moms from Tommy’s preschool.  We joke that we’re Gillian’s Kids (Gillian was Tommy’s preschool teacher, and a saint at that).  But in reality, if it weren’t for Ms. Gillian, I wouldn’t have met these women and forged a friendship out of this shared experience. They make life easier…mostly by laughing.  When Tommy “graduated” from preschool and moved on to a different classroom in the collaborative, I feared the bond we mothers shared would weaken and dissipate.  Fear not, we still roll into Special Olympics, soccer (disaster), baseball, playgrounds, and even Fenway Pahk together. On bad days, I’ve been known to forewarn everyone that we’re “coming in hot.” We’ve even branched out a little.  If you’re a friend of so and so, you’re a friend of mine!  What good are we if we can’t boost each other up while peeing our pants at the same time?  They’re more than friends, they’re family.

Tomorrow is the 30th, marking the end of Autism Awareness Month.  Believe it or not, I’ve learned quite a bit.  I’m not sure I could do this again, it’s not easy putting your life out there when your tendancy is to be private.  And if I knew how, I’d save the blog for Will to read years down the road.  I want him to know how he has shaped us and his brother.  If I had a super hero day at school, I’d dress as Will.

So…Leigh asked me to write an entry for this blog.  I said no.  I don’t share.  I don’t talk about my feelings.  I don’t need a good cry every now and then.  And I certainly don’t think things happen for a reason.

They just happen.  And you deal with them.  And you get used to them.  You get used to crushing meds every night, dissolving them in a syringe so you can inject them directly into you child’s stomach through a tube surgically inserted there (and that’s so he can get three or four hours of sleep he otherwise wouldn’t).  You get used to carrying his limp body up to bed.  You get used to watching Tommy watching other kids eat birthday cake.  Then- if you’re lucky, or inundated, or human- you start to forget.  You forget the weeks of sleeping in hospitals next to his crib.  You forget tearing up the first time he clapped or told a lie.  You forget the screaming.  Well, that you remember.

Thankfully, I am the Dad in all of this.  Nobody expects me to be warm and fuzzy.  Nobody looks at me funny when I am visibly aggravated.  Nobody judges me when I fail to see the silver lining or make lemonade out of lemons.  That’s what Moms do.

I tip my hat to moms.  In my house, mom makes the appointments.  Mom knows Tommy’s medical history by heart and the names of all his doctors.  (I don’t even know that many people.)  Mom also makes the grilled cheeses.  Mom makes sure Will does his homework and that he has jeans that fit.  She knows tomorrow is sports jersey day or fairy tale day day or show and tell or whatever the heck it is.  She’s Santa Claus and the Easter Bunny and the Tooth Fairy and the Leprechaun.  Mom is everything in my house.

However different our assumed responsibilities or approaches, we both want the same in the end.  We want Tommy to be happy and healthy.  We want him to be able to sleep without meds that would knock out a rhino.  We want him to have friends and meaningful experiences.

I want him to eat cake.

~Eric

Just over five years ago this past March, I went to see a medium with a few friends from work.  I wasn’t entirely sold on mediums or communication with the other side and I’m not entirely convinced now.  What I do know, however, is that from that night on, I don’t believe in coincidences.  Everything happens for a reason.

That late March evening, I was chosen out of a group of two dozen or so to be “read.”  Most of what the medium told me make some sense if I wanted it to.  But she also talked about a person I knew nothing about nor could remember the following day; the name meant nothing to me.  The medium kept telling me that Jesse was trying to help me.  The boy was Jesse Cooper.

The following week Eric and I had friends up from the Cape for dinner with their son.  We don’t nearly see them as much as we’d like.  As I was cutting vegetables in the kitchen, Jenn stood and talked to me about a presentation her job sponsored by Marianne Leone.  I wasn’t familiar with her.  Jenn went on to explain that Marianne Leone and her husband Chris Cooper, the actors, were the parents of Jesse Cooper.  I got chills.  That was the second time in a span of less than two weeks I heard Jesse Cooper’s name.  Who was he?

After our company left, I googled Jesse Cooper feverishly.  I found that Jesse Cooper died at the age of 17 from a seizure.  He also had cerebral palsy that left him a quadriplegic and unable to speak.  His famous actor parents lived in Massachusetts.  Marianne Leone’s presentation was on a book she wrote, Knowing Jesse.  I downloaded the book to my iPad that night.  Have you ever read a book in one sitting?  You just can’t put it down?  That was this book.  The opening paragraphs felt like someone had punched me in the chest.  Marianne Leone’s words quite literally took my breath away.  What she so vulnerably wrote on those pages resonate with me to this moment.

When I finished the book at 4am, I couldn’t go to bed.  I needed to find this woman.  I could not find any sort of contact information on the internet and I’m usually adept at doing that.  However, the very last page of the book had a P.O. Box address for the Jesse Cooper Foundation.  I sat at my desk and wrote this mother, a total stranger, and a celebrity, a letter.  It seemed absolutely ludicrous at the time and I knew it.  That’s why I hesitated to mail it.  Instead, I left it addressed and stamped on our kitchen counter only for Grandma Jean to throw in the mail on Wednesday, three days later.

On the Friday of that same week Tommy had a series of appointments at Mass General.  The first appointments were in one part of the hospital and the latter were in another building entirely.  To make a long story short, I was delayed leaving his neurology appointment and late to his GI appointment.  I had to run from one building to another with Tommy in his stroller and all of his bags in tow.  When I got to the Yawkey building, I had to battle the crowded elevators to the 6th floor.  You have no idea what kind of stress this causes me.

The first floor lobby of the Yawkey building seemed unusually crowded, but probably because I was in a rush and I hate to be late.  I ran to the row of elevators and saw one was wide open.  I remember thinking that I shouldn’t continue running because the doors would probably close on me when I reached it.  But they didn’t.  In fact, I was the only one in the elevator.  I tucked myself, along with Tommy into the back corner of the elevator and stared at the floor, like you do, waiting for more passengers.  I always tend to check out people’s shoes.  Some people look up at the floor numbers, I look down.

I can’t remember a single pair of shoes that entered the elevator that morning, but one.  A woman hurriedly crammed into the now crowded space.  It was April and she had sandals with a gel pedicure.  Who got gel pedicures…in April?  My concentration was broken by the gentleman next to me invading my personal space.  When I turned to my right, it was Chris Cooper.  I couldn’t stop staring.

A few moments later, from the other side of Cooper, I heard “I feel Jesse in here.”  It was Marianne Leone!  I got that lump in my throat you get when you want to cry, but don’t want to cry.  My eyes welled up.  Just then, Leone shuffled herself around the elevator to grab my arm and said to me “it’s you!”

A long conversation ensued.  A long conversation.  I told her how she’d be getting a letter from me either that day or the next.  That night she emailed me that she got my letter.  I’ve been in contact, not too frequently, since.

When I think back to that afternoon, I cringe.  I went through a long laundry list of all of Cooper’s work that I loved.  I completely neglected to tell Leone that I LOVE Goodfellas and The Sopranos!  I must admit that in addition to being freaked out by our paths crossing, I was a little star struck.

It was from this Oscar winning couple with all of the resources in the world available to them that I learned material things don’t mean a damn.  This isn’t to say that my own mother didn’t try to instill this in us our whole lives.  This was different.  In my second meeting with Jesse Cooper’s parents they explained I had one job as a special needs parent: set Tommy up for success so that he can be the teacher he was meant to be.  I think of the Coopers often. More importantly, I try to heed their advice.

Chris Cooper has just finished co-producing and narrating a documentary: Intelleigent Lives .  If you get a chance, check it out.

 

 

 

 

We just learned a few weeks ago that when Tommy loves a certain person or movie, it’s usually because they share letters with the letters in his name.  For example, Mommy and Tommy have almost all the same letters.  One of the girls in his class has an “o” in her first name, so does he.  She’s his friend.

He also loves things that are big.

Favorite state: Texas.

Favorite Angry Bird: Terrence.

Favorite country: Russia.

Favorite monster: Sulley.

Favorite planet: Jupiter.

Favorite continent: Asia.

Favorite landmark: Eiffel Tower.

He goes in phases of the things he loves.  This week it’s letters, again.  This past fall it was the Statue of Liberty.  Before that it was the Eiffel Tower.  It’s always been the solar system.  Two years ago he was obsessed with Monsters University.  His preoccupation coincided with Nicole, Grandma Jean’s granddaughter, going off to UNH her freshman year.  If you ask Tom where Nicole goes to school: Monsters University!  It also coincided with his affinity for Disney buses.  He loves the scene in Monsters University where Mike Wazowski gets to campus for a tour.  He would script “Monsters University, anyone getting off” over and over again.  Then he’d stim.

Nicole is comic relief just when you need it.  She also understands Tommy in ways many others don’t.  She’s able to bring him down when he’s on edge.  She knows what he’s talking about when he sees his numbers and letters in signs and landscape.  She talks planets with him.  She can also play to crowds and get Tom to do it, too.

Tommy has hyperlexia.  A fair number of autistic children are able to read, without being taught, at an unusually early age.  Tommy was under the age of two.  Nicole would take sidewalk chalk and make “happy As” on the pavement and then “biggggg Bs.”  She also was the first to discover his math skills.  She claims that she gets dibs on taking him to a casino, but there’s a long line of people wanting to cash in on that.

Last summer while waiting to get on the Kali River Rapid at Animal Kingdom, people  were exiting the ride past us and they were soaked.  I mean, they were soaked through every layer of clothing.  Nicole said, “hey Tommy, tell these people they barely got a drop on them!”  He did.  He got a pretty huge laugh from the crowd waiting to board the ride.  I still laugh.  If it were anyone else setting up the jokes for the Bomb to knock down, I’d be insulted and upset.  I’m not with Nicole.  She truly is one of the few people he lets in to his world, but it’s because she works to be there.

We’ve visited her at UNH on occasion and she informs Tommy that Sulley and Mike Wazowski are sleeping because they stayed up too late the night before.  Even her college friends know about Tommy and they play into his FaceTime calls when he needs to talk to Mike Wazowski.  On our last visit to New Hampshire, Tommy brought his mini Eiffel Tower (obsession of the month).  He laid on the ground and stared at the shadow cast by this small figure up close, for long periods of time.  Nicole and her friends patiently sat there trying to enter his world.  He lets them in.

We often joke, Nicole and me, that we don’t know how to explain to people how we’re related.  Technically, we’re not.  She’s part of my family, though.  Nicole keeps telling me she doesn’t know what she wants to do with her life.  Uhhhh, excuse me Macole (that’s what Tommy used to call her), you have a gift.  Have you thought about working with children with special needs?  I have.

Favorite big kid: Nicole.

July 6, 2017: I remember that day like it was yesterday.  It was the last day of our Disney vacation last summer and we were heading home on our 2:30 pm flight.  That morning Tommy started with his emphatic “I’m not leaving!” as he stomped one foot down repeatedly.  I didn’t have time for a tantrum, I was trying to finish packing up a week’s worth of luggage for four (Eric didn’t go), empty out the kitchen of our Disney Vacation villa, make sure Mom, Grandma Jean, and Nicole were ready, and catch up with the rest of our crew- Cat, her daughters and her niece.  The Owens were also in the house.

When we got to the Magical Express bus stop in front of Disney’s Saratoga Springs, there was a lovely woman seated on the bench with her husband.  Turns out she was a retired kindergarten teacher.  She thought she could calm Tommy down.  Ha. Wrong.  I genuinely appreciated her attempt.  He was whining by this point and kept saying he was going to live at Disney forever.

Once we were on a the bus and on our way to the airport, Tommy’s crying escalated.  He couldn’t stop.  It kills me to look at his big brown eyes with his long, long eyelashes and freckled nose with giant crocodile tears running down his face.  He was sad and upset and everyone on that bus knew it.

When we got to the Southwest ticket counter at MCO, I had to check my bags.  For whatever reason I was not approved for pre-check back at Saratoga Springs.  I know it’s random, but it felt like the travel gods were messing with me.  As if it wasn’t difficult enough, I had to go through the hassle of checking-in.  Me, one adult out of a group of ten adults and four kids.  By this point, we reached a level of tantrum that I couldn’t ignore.  A Southwest employee came over to me and informed me that if Tommy didn’t calm down, they could not let him fly.  Thanks, lady.  This wasn’t my first rodeo.

Most days I feel as though I’m unflappable, not this day.  I could feel my anxiety levels surging as I tried to get the rest of the group to just go.  Go through security, go to the gate.  Hell, get on the plane, just go.  I had to do this alone.  I know everyone is well intentioned, but trying to rationalize with an autistic child when they’re already having a meltdown only exacerbates the situation.

“Wait! Cat, stay?”  Of course, Cat stayed back with me to help get Tommy through TSA security.  She really is a good friend, the best.  I can’t think of a time when I’ve needed her and she hasn’t been there.  Her daughters and niece rock, too.  So does Nicole.  They were all too happy to take Will and James along with the rest of the group and head through security, get on the tram, and settle in at the gate.  I feel bad for Will in these situations.  We often have to give so much of ourselves to Tom that Will and James get left out.  I truly am grateful that Will is who he is.

If you’ve been to Orlando International Airport, you know it’s huge.  In that large center area before you queue up for TSA, Cat and I dropped our stuff and medicated Tommy for the flight home.  Syringes, meds, pill crusher, g-tube, flushes; we had it done and over in a minute as if we’d choreographed it.  The trick was to wait for his medication to kick in.  We waited about 10 minutes, Tom was relatively calm and we proceeded to the handicap security line.  Easy peasy, right?

No words on a page can ever do justice to what ensued once we got to the metal detectors and X-ray machine.  By this time, Tom started screaming “take me back to Disney right now!” at the top of his lungs repeatedly.  His face was red and he was crying again.  I could see veins in his neck every time he yelled.  Worse than all of that, I could feel the stares and hear stranger’s comments.  He’s not spoiled.  He’s not a brat.  The first TSA agent told Tom to get into the full body scanner.  You know the ones that have a blast of air?  You have to put your arms above your head?  Yeah, that one.  There was no way in hell he was going in there.  In the meantime, poor Cat struggled to put the carry-on containing all of meds, epi-pens, formula, feeding tube, feeding bags, and Tom’s stroller on the conveyor belt.  Could this get any worse?  Yup.

The TSA agent started yelling at Tommy to get in the body scanner.  He was on the floor screaming and kicking.  I was sweating.  Cat was cool as can be.  How?  Could she not hear what was going on behind her?  Did she know that the carry-on was about to set off every alarm and would be ripped apart by supervisors (happens every time)?  Just then, Tommy leapt up like a gazelle and ran back to where the grey bins were moving down the rollers to the x-ray machine.  What the h…he flipped one bin, then two bins!  I couldn’t tell if there were a laptop in any of those bins, but certainly there was personal property belonging to complete strangers.  The TSA agent started yelling at me that we were causing hysteria and passengers lines away were upset that they could hear the commotion.  “Tough sh*t,” I thought.

Cat was still calm.  HOW?  I was in tears.  Another TSA agent, a soft spoken gentleman, came over, along with all the other agents who already descended on us, and took me by the shoulder.  He moved Tommy and me into a private room where they pat passengers down while our bags were tested for explosives.  That room had one table, one chair, and a full length mirror screwed into the wall.  We were only in there for two minutes, max.  When we left the room, the mirror was ripped off the wall, shattered, and the chair had been thrown.  I’ve never seen anything like it from anyone, let alone my own five year-old child.  Obviously I was still crying.  That same gentleman very softly told me to just go.  He’d handle the carry-on testing, etc. and get it to the gate.  What?  He said he had a daughter who works with children with special needs.  He got it.  What a relief, in the moment.

I couldn’t thank that man enough.  I didn’t have time if I wanted to.  Before I knew it, Tommy flipped his stroller and ran off.  His timing was impeccable.  He ran through a crowd of strangers into the tram that takes you out to the gates.  The exit doors on the opposite side of the tram were still open, but starting to close.  He ran right through the tram car, through the closing doors and onto the platform on the other side!  I exerted super human strength that I didn’t know I had.  In one swoop I extended my arm and grabbed him before the doors complete slid closed. When I turned around, there was Cat.  She was quietly shedding a few tears, but still calm.  How???

A short tram ride later and we were at the gate as if nothing happened.  Tommy was out cold and other than a glisten of sweat and watery eyes, no one knew anything was amiss.

Most airlines allow disabled travelers to board aircraft first, including passengers with cognitive disabilities and autism.  When our gate was called, I slung Tom over my shoulder while Cat grabbed the carry-on and strollers (and James’ carseat).  Round three: an older man on the same flight started in on me that only disabled passengers could board first.  I spun around to verbally unload on him, not caring if i got bumped off the flight.  I had enough of strangers glaring, commenting, and mocking for one day.  I’m tired of reading about autistic passengers being removed from flights.  Before one word could come out of my mouth, there stood the savior from TSA.  He came to the gate to make sure we got there okay and were boarding with no problems.  But before even the TSA agent could say anything to the passenger spouting off, Patti put him in his place.  Yeah, girl!

A few words were exchanged between the TSA agent and the flight attendants.  I wasn’t privy to their conversation and at that point, I didn’t care.  I was defeated.  On board, Cat and I took row 1A, 1B, 1C.  The angry passenger took 1D and 1F.  Turns out he wanted have an empty seat between him and his wife.  He lied to every person that boarded telling them their middle seat was taken.  Then he’d glare at us.  Karma will get that guy, I thought to myself.

Just after we reached cruising altitude the head flight attendant fairly loudly announced to Cat and me that the pilot, first-officer and her flight crew did not let mothers of children with special needs pay for anything in-flight.  She said that extended to our party traveling with us.  I love Southwest.  The clinking of my plastic cup filled to the brim with gin and tonic to Cat’s was just enough karma I needed that day.  My new friend in 1D was seething.

The following week during his ABA session after school (Tommy goes to school all year), Tommy told Leslie (our ABA’s supervisor) that he cried because he didn’t want to leave Disney.  She asked him why Mommy and Cat cried.  “They also did not want to leave Disney?”  He had no recollection of the airport incident.  He also doesn’t know that “airport” is a verb and an adjective now.  He doesn’t understand and he doesn’t remember, but we do.

The real MVP that day?  Cat.

Fortunately we left Florida this morning with hardly a hiccup.  The credit goes to his speech therapist and teachers at school who spent months prepping Tommy for leaving Disney.  They wrote social stories, he helped.  They talked it through countless times.  Last Friday he came home from school with an activity bag full of his favorite things: planets, maps, capitals, states, word searches!  And there was one for Will, too!

I’m so grateful to everyone that helps us.  The guys at bell-services this morning told Tom they’d see him soon.  That’s no lie.  We’ll be back for the Fourth of July.  We’re flying…with Cat! xo

 

 

 

This morning I got up at 3am to hop a bus at 4am over to EPCOT.  I ran the Star Wars 5k. By the time I decided to run this weekend, the 1/2 marathon was already closed.  The 10k was, too.  It’s just as well, I’m not sure how I would have powered through 2 1/2 hours of running after getting little sleep last night.

We spent most of the day yesterday at the pool.  The weather is beautiful and they have TONS of activities for the kids at the resort pool parties: bingo, water balloon sits, hula hooping, line dancing, etc.  Will loved it.  Tommy on the other hand was somewhere inside himself and it was difficult to draw him out.  He probably went up and down the waterslide a dozen or so times.  He fatigues easily and couldn’t keep up with Will like he usually does.  It broke our hearts to watch most of the kids at the pool playing the various games in a boisterous group while Tommy was off by himself scripting about God only knows what.  It’s sometimes hard to watch.  All the while, both Eric and I were sure to keep Tommy as hydrated as possible.  During all of this, Tommy only spoke to me once.  “I don’t want to leave Disney, Mommy.  I’m having too many funs.”  I knew right then to brace myself.  If he didn’t start that night, it was coming.  It became blatantly apparent that in Tom’s mind, he already began to obsess over having to leave.  I don’t blame him, it’s Magical here.  And let’s face it nobody wants to leave Disney.  Tommy doesn’t understand.

By dinner, Tommy was sick.  He couldn’t keep anything down, including his medications. To put it in perspective, he can go 31 hours without sleep.  It may be more, but that’s the longest we’ve gone without medicating him.  His brain just does not power down.  Because he had gotten ill, Tommy was awake most of last night.  He also has involuntary leg and arm jerks from being exhausted even though he’s awake.  Thankfully, Eric took the brunt of the sleepless night knowing I was running this morning.

 

 

If you’re a runner and you haven’t run here at Disney World, it’s a must.  Again, there isn’t anything they haven’t thought of.  The Star Wars 1/2 Marathon weekend is raising money for the Make a Wish Foundation.  We know too many children who have benefitted from this amazing organization and I was happy to donate.  Frankly, if you know one child who has been granted a wish from this foundation, it’s too many.

I’m back at Old Key West; everyone is catching up on a lost nights sleep except for Will, Tommy and me.  Tommy’s got his feeding pump running; I hope he can keep it down.  All that’s left for this trip is to go up in the balloon at Disney Springs and Toy Story Mania at Hollywood Studios.  Both activities are contingent on Tommy feeling up to it.

Over the last hour or so, the Bomb keeps bursting into tears and repeating “I don’t want to leave Disney.”  I know, buddy.  I have too many funs, too.

 

 

May the Force be with you…  xo

 

 

 

Yesterday Eric, the boys, and I were taking the bus back to Old Key West from EPCOT. We waited in line for our resort bus for probably no less than 5 minutes; magical.  When folks in line started to climb aboard, both Eric and I were astonished that a young mother with a newborn strapped to her chest and a little one (probably James’ age) in tow and a diaper bag and double stroller was struggling to get on the bus.  We obviously were going back to the same resort (we were on the same bus) and she obviously could use a hand.  Instead of getting off at our stop, we rode the extra 10 minutes around the Old Key West property so Eric could help this mother unload all her belongings from the bus.  She must have thanked us a dozen times.  No need, lady, we all need help from time to time. Pay it forward. I can’t count how many times total strangers have lent a hand, never mind the crew I’m usually traveling with.

Then this morning I watched the news with George Stephanopoulos.  I’m always at work for the morning news shows and I genuinely don’t have a preference.  I might now.  George commented this morning on a story about the Boston Marathon.  He was interviewing the winner, a woman, along with the woman who just won the New York City Marathon.  The runners were discussing how they were helping each other during the race (blocking wind, etc.).  George was perplexed.  Isn’t this a competitive world class race?  Why would they help each other?  Ummmm, they’re probably moms.  We all need help from time to time.  I digress.

Like I said, I’m not really a Disney fanatic.  Believe me, I’m not.  I am a Disney Resort fanatic.  I’ve been fortunate enough in my life to travel quite extensively.  I’ve never taken that for granted.  But I will admit that I’m a Disney snob.  If you can think of it, they’ve already thought of it.  It’s the standard of measure for us when we go other places.  Nothing seems to quite compare to Disney Vacation Club.  I also love that here at Disney, they level the playing field for so many people with disabilities.  Here, there is almost no such thing as a disability.

Disney issues Guests with Disabilities passes for folks who are not able to wait in line for one reason or other or need assistance in other ways. It’s seamless and seemingly invisible; that’s the Disney way. Tommy 1) doesn’t understand the concept of waiting in lines for long periods of time and 2) uses a feeding pump.  In the heat, the pump is no bueno.  They also allow us to use his stroller as a wheelchair and give us a tag that denotes such.  He’s scrappy, but his legs are little and not too strong.  I’m getting close to the point where I can’t physical carry him.  We don’t get too many stares and I find that whenever I’m at the pool, all of the special needs parents find me.  There are so many kids enjoying the Magic of Disney that have it far worse than we can even imagine.  It’s not a competition anyway. If you need help, there are loads of guests and cast members willing to do just that.

Above all of that, for a few weeks a year, Tommy gets to somewhat be a normal kid.  He goes on rides (he freaks out and gets off rides), he wants to join pool parties at the resort, he loves the waterslide at the pool, and he is just as mesmerized as every other kid when they see Mickey.  It’s all real to him.  Don’t get me wrong, it’s real to Will, James, and me too!

Have a magical night!

Yesterday we left for our trip to Orlando; Mom’s staying at the house.  Will went right back to sleep when we put in him the car at 1am.  Tommy, although heavily medicated, powered through it.  He stayed awake with the exception of one twenty minute cat nap late in the afternoon.  James didn’t go to sleep either.  He also cat napped after we stopped for breakfast in Richmond.  By the time we reached Savannah, the adults were zombies and the boys were wired.

From Richmond to Savannah, Tommy didn’t seem right.  He doesn’t have the expressive language to tell us when something hurts or he doesn’t feel well, usually.  When we unloaded in Savannah and got everyone undressed to bathe and crash, it was clear why Tommy was being so difficult.  He was covered from head to toe in a rash.  I gave him Benadryl along with his night meds via g-tube.

Communication (verbal and social) as difficult for many ASD kids.  Socially, Tommy doesn’t always make eye contact and appears to be in his own world.  Some of the time he’s very appropriate, but that’s after years of training through ABA (applied behavior analysis) at home and school.  He stims most of the time.  Stim is short for self-stimulatory behavior and we actually all stim at some point or another.  One may play with their hair, tap their pencil, shake their leg.  In persons with ASD, stimming often interferes with daily activities and learning.  In Tommy’s case, he flaps his hands uncontrollably and runs back and forth while scripting to himself.  He also holds objects up to his eye as close as he can to observe them, ad nauseam.  We’ve become accustomed to it.  In truth, it only bothers me when someone tells him to stop.  He can’t.  When he does it in public, people stare.  You know the stare, as if to say “that poor kid.”  Don’t have pity on Tommy Pickles, he’s genuinely a happy kid and he’s funny.  Living in his world is way cooler than living in ours. 😉

This morning the rash is better but it’s still there.  He’s in a much better mood and is very excited to tell us facts about each state we’ve driven through (capitals, state mottos, state birds).  Cross your fingers that we won’t have to call up to MGH who then calls the nearest hospital wherever we are for treatment instructions.

On the road again; I just can’t wait to get on the road again…”   We’ve been on the road for 30 minutes (after a CVS and Dunkin’ stop) and Will just informed us from the back that he has to pee.  Hahaha.  Nosies, I’m not telling Eric we have to stop.

Happy Sunday 🙂

After my post the other day, one of my best friends, Cat, called me to tell me “Ethel, you forgot the vomit bags!”  She was referring to Tommy’s tendency to projectile vomit once he’s hit just the right level of anxiety.  I didn’t mention the bags in my laundry list of “must pack.”  We don’t go anywhere without the blue Medline hospital issued vomit bags.  I laughed when she reminded me.  I also made sure I put a sleeve of them in the car.

Cat (two legs, not four- Tommy uses that description for clarification), has a way of throwing my own brand of sarcasm back at me.  This June, it’ll be 21 years teaching for me.  Cat’s been teaching here since before I started.  This is also true for another retired colleague, Patti.  Our paths very rarely crossed until Tommy was born.

Tommy was born on a Saturday morning.  On Monday afternoon, Cat and Patti, or as Eric likes to call them, Catricia, showed up at the hospital bearing gifts.  I was shocked and even more so, glad to see them!  What they didn’t know at the time was that from the moment I first held Tommy in my arms I knew something was wrong.  It terrified me.  I didn’t want Catricia to leave the hospital that afternoon.  It wouldn’t be the last time either woman went out of their way to help me, pick me up, support me, or show up at a hospital.  Each time, I hated when they left.  I still do.

Cat and Patti are no longer just colleagues.  They aren’t work friends.  They are family.  They have seen me at my most vulnerable; they have seen Tommy’s highs and lows.  And when I cry, which usually from laughing, they cry with me.  Most importantly, they don’t judge me.

I’ve been reading posts all month about Autism Awareness.  Some articles go something like this-  “30 facts in 30 days.”  You most likely have seen them, too.  The other day one of these articles caught my eye, “Tips for Going on Vacation with Children with Special Needs.”  I literally laughed out loud.  Cat (two legs, not four), knows better than anyone what Tommy can be like when vacations ends.  Whoever wrote that article clearly does not use the word “airport” as an adjective, but I do.  “Was it bad?”  “Yup.”  “Airport bad?”

July 6, 2017.  I will never forget that day.  Before I share, I’ll tell you what I  learned:

1. I don’t know why Cat would sign up to go on vacation with me again, but she did.  #summer2018
2. Not everyone in TSA is a jerk.  We found one compassionate person who saved me from paying for a lot of damage.  The same holds true for flight attendants.
3. People in general are judgmental.
4. Sometimes laughter really is the only thing you have in certain situations.
5. When your friends love you and your kids unconditionally, you don’t let ’em go.

Buckle up.

 

We leave for Florida on Friday night, maybe early Saturday morning. What a daunting task.  For the typical family, you pack three outfits per kid, a few bathing suits, something to entertain them and it’s done.  Packing for Tommy Pickles is a job.  I’m serious, it’s work.  You have to pack his clothes; makes sense.  Bathing suit, got it.  Then there’s the trip’s duration worth of prescription formula (that’s all he eats), feeding bags, feeding pump, syringes, medications, refrigerated medications (requires a cooler), an extra g-tube balloon, epi-pen.  This is actually morphing into the packing checklist I should be writing already.  He also uses a weighted blanket and I can’t forget his baby.  His baby is gross.  He rubs the tag on it and bites it.  It’s gross.

Packing stresses me out.  Most mornings, I forget half of what I need for work let alone a trip.  At least once a week I call Eric before he leaves the house to ask him to bring my whatever it is I left behind.  If I were him, I wouldn’t answer my phone.  I almost left my house this morning without my good luck medallion.  I always have it in my pocket or at the very least, in the console of my car.  Of all things I forget for work, this is never it.

When Tommy was eight months old, he had meningitis.  He had already been sick for a while.  It was an allergic reaction to a blood plasma transfusion.  Within a month, he had meningitis again.  They tried the infusion again several weeks later, but using a different method/technique, to no avail.  His body rejected the second transfusion.  That was an awful summer.  I spent most of it on the 17th floor of the Ellison Building at MGH.  It was there that I met one of the most incredible nurses.  Turns out, she’s the sister of a colleague.  If you’ve ever had a child hospitalized for any length of time (or maybe for a short time, I dunno) you know how exhausting it is both physically and emotionally.  You need breaks, but you can’t take breaks unless someone is willing to sit with your baby.  That summer, we relied on volunteers who were willing to endure bouts of screaming and crying so we (I) could go for a walk down Cambridge or Charles St.  When one of us were at MGH, the other was home with Will who was not even 2 years old.

One afternoon in July, I went for a walk.  When I returned, I stepped off the elevator on the 17th floor to be buzzed into the pediatric unit.  I immediately panicked.  I didn’t hear Tommy crying.  He cried non stop.  When I got to the doorway of his room, there in the rocking chair was an angel, a gift from God.  She’s the best nurse, outside of my mom, I’ve ever met.  There she was rocking Tommy in the rocking chair, humming, and he was dozing off to sleep.  She came up to visit on her break.  Her break!!! I will never forget that moment.

Since that summer, almost 6 years ago, we see her intermittently on our trips to Boston.  She works in the Emergency Department and we’ve had our share of visits.   She’s exceptional.  Her sister with whom I work is equally angelic.  If you know who I’m referring to, you know I’m right.  I had to return to work at the end of that summer, right in the midst of bouts of meningitis.  I remember sitting in a meeting the day before students returned for the school year and bursting into tears.  How the hell was I ever going to work?  I couldn’t do it, so I thought.  That afternoon, my favorite nurse’s sister sought me out and gave me this medallion.  She told me her mother gave it to her years before and I should hold on to it for luck.  It has an Irish blessing on the back.  I still carry it every day.  I know it’s on loan, but I can’t part with it.

I have to finish packing for our trip.  I wasn’t expecting the trip I’m on with Tom Bomb, and maybe that’s why I always feel unprepared for what’s coming next.  I had no time to plan or pack.  Maybe that’s why I stress packing for vacation, I hate the feeling of being unprepared or the unexpected.

But in the midst of this, know that I tuck memories away in my heart that occasionally get unpacked.  To my favorite nurse, when I think of you, I am reminded that there are incredibly selfless people who walk into our lives and in my opinion, not by accident.  I hold your sister in the same regard.  To Will and James, I will probably forget to pack your underwear or your toothbrush, we can always buy them there, but I’ll have an Irish blessing to read to you.  xoxo

Most people hate Mondays.  It’s the end of the weekend and the beginning of the dreaded work week.  I actually love my job.  Some days it’s easier to go to work.  It’s having three boys that makes it easy, not because any one of them is more difficult than the other.  Ha.

Yesterday, while Will and I were out, Eric said that Tommy pouted for a short time and then went off to do his thing.  Not long after that Tom was calling Eric into the playroom to show him that he was a turtle.  He may have moved on, but there was no way he let it go.  Eric was convinced he did.  Surely you jest.  Tommy forgets nothing.  When I went into Tom’s room this morning at 5:30 am, the first thing he said to me was “I just want to be with Gram.”  I think it’s his was of apologizing.

I didn’t see Tom after I left for work.  On Mondays he has OT in Weymouth.  As soon as he gets home he takes his meds for car sickness, grabs his formula and he’s off.  He and Eric don’t get back much before 7:30.

In the meantime,  I get an afternoon with Will and James.  It’s been just about two years since James arrived on the scene.  Almost every day Tommy will comment with a great deal of aggravation that James is still here.  I can’t help but laugh.  It’s like groundhog day.  Every time we all get in the car Tommy asks if James has to come with us.  Yes, he lives with us.

I RSVP’d with the Lurie Center for Autism in Lexington for an open discussion with the “experts” in a few weeks.  The Lurie Center is part of Mass General Hospital.  They take a multi-discilpinary approach to treating patients with autism.  We’ve been linked in with MGH since Tommy was two weeks old.  It made sense after Tommy’s ASD diagnosis to stay in the MGH group and thus the Lurie Center, which has an astronomically long waiting list.  Fortunately we managed to get in right away.  Because Tommy has significant medical issues he has multiple specialists: neurology, GI, immunology, audiology, pulmonary, hematology, genetics.  Gahhhhhh.  They always seem to pull strings for us.  MGH has been an invaluable resource and quite literally, a life saver.  I can’t say enough great things about them.

Will, James and I went to the outlets this afternoon.  Of course the store I needed to go to was across from the Disney outlet.  I let those two loose.  James picked out a swim shirt that had Mickey on it (it was eye level) and Will picked out a beach towel that he thought Tommy would like, nothing for himself.  Seriously, where did this kid come from???

After that, we had dinner with friends and then back home.  Will’s been begging me to start running.  This evening he ran a mile and cut down on his time.  Again, Will, you’re 7.  He says he needs to train so he can be in better shape to play golf.  Hi, AARP called, they need their kid back.  He should probably work on his dance moves.

Don’t sleep on J-Bird (as Colie so affectionately calls James…and it stuck).  He’s got the devil in his eye and he’s into everything.  He wants to entertain and therefore works to command a room.  Relax, buddy.  We all know you’re here; well, almost.

 

 

 

When I was a kid, my parents did the whole “good cop, bad cop” thing with us.  “Wait until Mom gets home.”  Blah, blah, blah.  The idle threats didn’t deter us much from being a PITA until Mom actually got home; stopped, dead in our tracks.  I suspect this is how most families operate.

Tommy didn’t want to leave my mother’s house today.  We’d been there for a few hours and he was in midst of looking up facts about planets on her laptop, as if he were to learn something he didn’t already know.  Occasionally he’d impart a random fact that, truth be told, went in one ear and right out the other.  Wait, that’s not true.  He said a few things about Uranus that made us laugh from the other room.  He has no idea what he says is sometimes hilarious.  Thankfully, Will doesn’t get the double entendres, yet.

The meltdown was almost on an “airport” level.  Almost.  Perhaps I’ll share the airport story at some point, but let’s just say that TSA probably has him on some sort of “list.”  Why?  He didn’t want to leave Disney, of course.  Today he didn’t want to leave my mother’s.  When I finally got him out of the house and into the car,  I couldn’t keep him seat belted.  He wanted out of the car and he would not stop screaming that he wanted to be with Gram.  Uhhh, who doesn’t Tom?  When he reached for the fold down tv screen, I yanked him out of the car.  I’d have to go back to get him later.  I drove off, he didn’t care.

I had to call Eric and ask him to drive over and pick Tommy up.  In the 20 minutes or so between our house and my mother’s, you can surely bet that Tommy would still be screaming and crying that he’s NOT leaving.  Let’s be clear.  This is not bratty, unruly-child crying.  This is on an entirely different level.  It’s fairly typical for kids on the spectrum.  It’s why kids like Tommy spend hour after hour each week with so many therapists; they have to learn about emotions, learn empathy, learn to self-soothe.  It’s exhausting.

I got about a half mile away and my heart was broken.  You can’t imagine how parents beat themselves up and second guess themselves.  I called my mom.  Tommy opted to have me come back rather than having Dad come get him.  He knew…Dad would play bad cop.  So I turned around and went back.  He still cried and screamed the whole way home.  His words stung today.  He can appropriately script lines from television shows, movies, books, cartoons, and even the news to communicate that he’s really pissed at you and he wants you to know it.  He kept screaming that he was going to destroy my house.  “You have no family!”  Then he asked me if I’ve thought about “bird control.”  Whaaatttt????  Wait a minute, Angry Birds movie.

When we got home, Eric was waiting in the garage.  As I like to call it, we were “coming in hot.”  One stern command to get out of the car and the look of death and Tommy shut his Angry Bird self down.  I got James out of the car and then Will and I went for a ride.  Will isn’t always able to let it roll off his back when Tommy tells him he should take his house and move it out to the beach, like Red Bird.

Today was in large part my fault.  I know better than to spring anything on Tommy without a warning.  You have to frame out the day for him.  Social stories are our life.  Washing hands- social story.  Getting dressed- social story.  Going anywhere- social story.  Playing things by ear are not an option.  Want to go to the grocery store?  He needs to know what number register you’re checking out of before you even get in the store.  In his classroom, they have a daily calendar.  Each day the students are thrown a curveball in their schedule.  It’s called a zigzag.  They are trying to teach the kids to be flexible.  We’ve got a way to go.

I got so wrapped up in wrestling with Will and James this afternoon that I forgot to start a countdown of when we were leaving to go home.  Oh yeah, he also always needs to see a clock and needs to know what time everything’s happening.  In Tom’s mind, I suspect he thought he was staying over and he’d go home when he was ready….tomorrow.

On our ride, Will and I went to visit a dear friend.  She knew right away when we walked in that we most likely had a rough afternoon.  Will played checkers.  I tried to hold back my tears.  I don’t know if someday my boys will know (like I figured out as an adult) that playing good cop and bad cop is a charade.  Eric and I complement each other well.  When I have nerves of steel, I can bare the brunt.  When I’m fried, he does.

I think I’ll scrap the “good cop, bad cop.”  When I was a kid, we were nudges for the sake of being a nudge and getting my father’s Irish up.  That’s not what’s happening here.  Instead, I think I’ll go thank Eric for being the peanut butter to my jelly.  🙂  Tomorrow’s a new day and I have to frame it out.

 

 

Today wiped me out.  I ran a 5k and then off to baseball with Tommy.  I signed Tommy up to play in a “challenger” league in a town a good 1/2 hour from our house.  There aren’t many opportunities for kids with special needs to participate in sports.  We could squeak by in t-ball, but he’s getting older and it’s time to move on.

While I ran around like a nut, because I always spread myself too thin, Will went to my mother’s house.  He loves to sleep over when it’s just him.  He needs the one on one attention from her and they are so much alike.  I predict in about an hour or so, Will will call to tell me that he misses Tommy and will want to see him first thing in the morning.

I’ll take Tommy and James first thing, upon request.  Only I will know the real reason to scoot over so early.  I need my Mom.  Sometimes I just need to be near her or listen to her ramble.  It’s my comfort zone.  When I don’t want to talk, she doesn’t push.  She also just gets it, and me.

Enjoy your weekend!

Yesterday, I was exhausted.  By the time all three boys were in bed, I was ready for bed; it was only 7:30.  I just didn’t have it in me to dig my laptop out of my school bag.  Tonight, I feel equally exhausted.  I looked at my husband and whined.  Do I have 24 more entries in me?  He told me I was ridiculous.  “Leigh, it writes itself.”

A week from tonight we will make our yearly April sojourn to Disney.  We are not by any stretch of the imagination Disney fanatics.  We are Disney resort fanatics; there’s a difference.

Between now and next Friday we have so much to do.  We have to pack, get to baseball, OT, ABA, shop, go to school…you get the drift.  But the most dreaded task of them all: haircuts.  Will getting a haircut- easy.  James getting a haircut- easy.  Tommy getting a haircut- hell on earth.  Know what we did this afternoon?  Tommy got his hair cut.

I’ll spare you the intimate details of how he screamed from the time he got in the ‘Burb until we rolled up on the salon (the absolute most patient stylist I’ve ever known is brave enough to take on this task, bless her heart).  I mean, he screamed holy hell.  In a less than ten minute drive, he informed me no less than 40 times that he was NOT having a haircut, he’s NOT my friend, and I am NOT his mother.  When we arrived, Will very happily chatted away while he got his “lid did” like the old man that he is.  I like when I get to take just Will.  He can talk to anyone.  This afternoon, while Will probably joked about his day at school as though he had a great Friday afternoon at the office, I tried to calm Tommy down by squeezing him.

Tommy seeks sensory input when he’s upset or anxious.  If you watch carefully, many kids on the spectrum, when they tantrum, will throw themselves on the floor or ground, run into walls, hit themselves, etc.  They can’t make sense of what is going on around them and the input of pressure on their bodies helps them to calm down.  There is not a thing you say that will do the trick.  No rational argument, no yelling, no threat will bring them down.  In fact, verbal feedback usually escalates the situation.  Instead, I sat and squeezed Tommy’s arms, legs, hips, and pressed down on his shoulders.

By the time it was his turn and Will swapped out, as if nothing was amiss, Tom was not much calmer.  He was still yelling and crying and trying to avoid the scissors.  What he hates even more than scissors to cut his hair are the dreaded clippers.  He can’t handle the noise and the buzzing.

In the end, he survived.  His hair looks great.  The stylist, who just gets him, was unfazed.  Will was his typical happy-go-lucky self.  And me, my nerves were shot to hell.  Was it wine o’clock yet?  We were 40 minutes into a tantrum and it wasn’t ending anytime soon.  The angelic stylist looked at me and said “he’s off, no big deal.  He usually comes on Saturday and he’s had a long day at school.”  SHE GETS IT!!!  She’s phenomenal.

By the time we got back home, Tommy was showing off his new haircut to Dad and telling him all about Jupiter.  Typical.

How fitting that the photo above showed up in my FB memories today.  That’s Grandma Jean.  I honestly don’t know where Eric and I would be without her.  I’ve literally known her since I was two days old (sooo, 22 years 😉 ).  As a kid, my family lived across the street from her and her husband in one of the best neighborhoods you could ever want to live in.  My mother still lives there.  Jean’s kids babysat my brothers and me as kids.  I babysat all of Jean’s grandkids.  Grandma Jean babysits my kids.   I guess it’s the circle of life.

Side-note on the neighborhood: some of the best people I’ve ever known I grew up with or around on Barbara Road and Duffy Dr.  I genuinely wish my kids could have that same experience.

Back to Jean.  She’s so many things to us.  For me, she’s my biggest cheerleader and when I need it, my toughest critic.  It’s always from a place of love and she’s almost always right.  Her life experiences and professional experience have been a wealth of help to us.  When this journey started, and ever since, I can count on Jean to remind me to focus on the positive.  It’s easy to lose perspective some days.

The bond between Tommy and Jean is like no other.  He doesn’t like to be touched, it’s a sensory issue.  When you hug him, he doesn’t hug you back.  Yet he cuddles with Jean every morning at 6:00 am until 6:22 am (routines are essential and he’s got stuff to do after 6:22..haha).  Tommy cries crocodile tears when she leaves after he gets home from school and he misses her something awful when he can’t be with her on weekends.  She’s always been family (I’m a huge believer in picking my own) and her family has been so generous and loving, too.  We’ve intruded unexpectedly, we’ve inconvenienced them during hospitalizations, and we’ve kidnapped Jean to vacation with us.  Every therapist who has worked in my home, every teacher, van driver, every doctor knows Grandma Jean.  Tommy’s classmates all know Grandma Jean.  Who doesn’t know Grandma Jean?!?!?

She gives the best hugs and cuddles, she’s a card shark, she sees the best in everyone and she believes in us.  So be jealous, the best people I know come from the best neighborhood where friends are family.

 

To say that raising a child “takes a village” is an understatement.  For many families, the village is much smaller than ours.  Tommy’s village is huge, but at the same time, so close-knit and closed off.  Hear me out.

In the beginning, when Tommy was weeks, even months old, he spent soooo much time at MGH for Children.  By eight months old, he was enrolled in Early Intervention.  And then it began.  I can’t remember a time in the last six years when we haven’t had some sort of therapist at the house.  They become part of our family in a very strange sort of way.  We had educational therapists, occupational, speech, and physical therapists.  We had visiting nurses.  Hell, the valet guy at MGH always greets Tommy with the happiest of “hello, Mr. Thomas” each time we pull up to the Yawkey Building.  I never felt like I was Tommy’s mom.  It felt more like I was on this crazy ride and Tom was my tour guide.

Just after Tommy’s second birthday, I got a phone call from Tommy’s pulmonologist.  It’s a phone call I will never forget.  In all fairness, I remember every conversation with this particular specialist because he’s so funny, even though he doesn’t always mean to be.  In retrospect, I think it’s from him that I learned that we  can find the humor in our daily lives even though there are times they seem so incredibly difficult.  He’s also from Dublin and sounds like Mrs. Doubtfire.  His hilariousness and bluntness is exacerbated on the phone.  Can you hear the voice in your head as you read?  “Hellllooooo?”  Yeah, he’s the one that broke it to me that Tommy is autistic.  Yup, over the phone.  It went just like this: “Well, there’s good news and there’s bad news.”  I asked for the good news first.  “Tommy’s Rainman.”  I was stunned.  What’s the bad news?  “Tommy’s Rainman.”  I laughed.  That was my first reaction.  I was never upset over the delivery.  I was thankful that was how he told me, in a jocular way.  I needed that.  I didn’t know what the road would look like, but I knew in that moment that it was all in how we approached it.  My attitude and my husband’s attitude would and will continue to dictate how we operate in Tommy’s world.

Shortly after that phone call ABA started at home.  That’s at least three more therapists rotating through our afternoon schedule.  Fast forward four years and we still have a revolving door.   This isn’t unique to many families raising an autistic child.  I don’t mind it.  The more difficult part for me is how much my life has changed and will keep changing.  People come and go.  Friends either understand or they don’t.  I can’t go out for a “ladies night” like I once could.  I have friends I haven’t talked to in forever.  I haven’t forgotten about them or love them any less, I just can’t juggle it all.  I can’t drag all of my boys to birthdays, holidays, the movies, the playground, etc.  Everything we do is contingent on Tommy.  Did I mention that Will gives up so much?  And given the choice, he chooses Tommy every.single.time.

Tommy goes to school in a collaborative.  He’s in a classroom with 4 third graders, 3 second graders, and him.  He’s the only kindergartener.  He’s been reading since he was two (that’s for another day).  Academics are not an issue right now.  For example, he knows all the states and capitals and can draw the U.S. map almost to scale including the accurate placement of their capitals.  He can list world countries in alphabetical order.  There isn’t much he doesn’t know about the solar system.  I can get him to script Uranus jokes even though they aren’t funny to him.  He can recite conversations verbatim (ya have to watch what you say around him).  Yet, he has never told me he loves me without being prompted.  Conversations are mostly scripted.  He’s distracted by the world of numbers and letters he sees in street signs, clouds, buildings, and abstract space.  He gets frustrated easily, even angry.  It’s fascinating and heartbreaking at the same time.

So to date, our village now includes his teachers at school and all of the therapists there.  They are simply amazing.  I couldn’t navigate this without them.  They “collaborate” with us as much as we need to help Tommy navigate our world, which is getting more and more challenging for him.  They help us to help Tommy with his sibling interactions.  They help us with that trip to Target.  They are nothing short of amazing.

So, if you’ve felt slighted by me in the last few years, it’s not you.  It’s 100% me.  I’m tired. I’m spread too thin.  I’m working full-time.  I can’t apologize because that would imply guilt.  Just please know I’m toggling between our world and the world of a boy with big brown eyes and nose freckles that would melt your heart in a second.  He’s the best tour guide ever.

This brings me to my Mom Tribe… they are my proverbial oxygen mask.  I even pull away from them from time to time, but they GET IT.  They’re living a similar life.  I’ll tell you about them sometime.