A year in Holland.

A year ago today my husband and I sat in the office of the chief of Developmental Medicine at Children’s Hospital Boston and received life changing news.  Our son had autism.

Today I try to sit and reflect on what has happened in the past year.  How this life changing news, well….changed our lives.  And it has.  For sure.  Only not in the way you’d probably think.

We got the words.  Autism Spectrum Disorder.  For one day, it sucked.  And then I got over it.  And then I decided to fight.  Fight for it.  Fight for Jack.  But never fight against it.  This wasn’t something I could ever, or would ever try to eradicate from Jack.  It’s as much a part of him as his beautiful blonde hair or gorgeous blue eyes.  It’s part of what makes him so freaking awesome, and come on…if you’ve ever met Jack you know one thing is for sure…he’s definitely freaking awesome.   His ASD is what makes him love things so intensely, feel so much fervor for the things that make him happy.  I love that he loves trains.  I love that he tries to trick me into making him mac & cheese every day.  I wouldn’t change the fact that I now know more about how a steam engine works than I ever thought possible.  I wouldn’t change the fact that no matter how much I’ve learned, Jack still knows 10x more about how a steam engine works than I do.  :)

But while I wasn’t going to fight against ASD, I certainly wasn’t going to just accept this diagnosis and call it a day.  From day one I thought, “ok.  He has ASD.  But it doesn’t have him.”  And so I made the decision to fight right alongside with Jack.  And that’s just what we did.  He did the real work and I just tried to stop anyone that got in his way of progress. He pushed (and continues to still) through the stress, through the frustration, with his therapists.  I mean….one year ago today he had LESS THAN 25 WORDS.  Today….well, today he’s above average verbally.  He goes to school, and he loves it.  He has friends.  He has flown through program after program in ABA therapy.  We can leave the house.  You can reason with him.  He stopped running away every time you let go of his hand.  He can get a haircut.  He can tell you what scares him.  He can tell you when he’s mad.  He can tell you that he’s sorry.  He can tell you that he loves you.  He fought for himself.  And me?  I fought for him.  I fought with the people who said no.  The people who said he didn’t qualify.  The people who gave us dirty looks in public when things were hard for Jack.

I feel like my life is a completely different one than it was a year ago.  I speak differently because I have a different language now.  I’m a better parent now to both of my kids.  I feel like I’ve become a better person.

And Jack?  Well, he’s not even the same kid.  All kids grow and change and develop…but this was something more.  He has transformed.  And it has been a privilege to have a front row seat on the train that is his journey.  I can’t wait to see where our tracks go next.  But I know it’s going to be a beautiful ride.  Because he’s not letting anything get in his way.  And that’s a lesson we could all learn from this little guy.

A year of Early Intervention.

An Early Intervention evaluation team just left my house.  They were numbers 3, 4, 5 and 6 of professionals that left my house today.  Just a part of my everyday life now.  But when that team left my home a year ago it was a frightening and devastating experience.

It has been a year since Jack was administered the Battelle test and found to be eligible for Early Intervention services.  It seems so long ago.  What started as a concern over seemingly minor developmental delays rapidly catapulted itself into a world that…well….took over everything.

When Jack failed so many aspects of the evaluation last September it rocked me to my core.  I was in tears after the team left and I had to come to grips with the fact that things were worse than I thought.  I had been through an EI evaluation before, with a child that my family had fostered.  I had seen how difficult it was to get a kid with delays in one area to be eligible if they seemed up to par in other aspects of development.  So under no circumstances did I think Jack was going to be eligible.  His minor speech delays and behavioral issues would surely be overshadowed by his physical attributes.  But he failed in several areas.  Worst of all, he scored as low as the test allowed for in the area of communication.  It really was that bad.

Things obviously moved quickly.  He went from one session of EI per week, to instantly two sessions.  Within a short period of time it was determined he was eligible for Occupational Therapy and then soon after he began a structured playgroup for socialization.  Within a month we discussed getting him evaluated for autism.  My life had changed in what felt like an instant.

Since that time things have obviously progressed even further.  Jack was diagnosed with ASD, started ABA therapy and moved to a separating playgroup.  If I thought life with EI was insane….well….that would be like a vacation to me now.

But it is soooooooooo worth it.

Jack is living proof that Early Intervention works.  He should be their poster child.  Literally.  Put this kid’s face on your flyers peeps, cause not only is he beautiful, but he’s also jumping hurdles like an olympic track star.  And it’s thanks to all of the compassionate, brilliant, underpaid, overworked people that Early Intervention has brought into our lives.

Today, the evaluation team administered the same test that was given to Jack a year ago which began this whole whirlwind.

And today…..he passed with flying colors.

Jack’s diagnosis of ASD is the only thing keeping him in Early Intervention.  Without it, he would be deemed ineligible because of the progress he’s made.  The numbers are fairly arbitrary for most of us, since the average Joe isn’t walking around completely verbose in developmental assessment tool scoring, but his gross/fine motor score went from 82 to a 107.  Cognition went from 80 to 96.  Social/emotional went from 90 to a 106.  His communication score went from a 55, which is the lowest you can get, to 98 today!  When Jack began EI, he had 9 words.  9.  I can tell you for certain how many he had because I could count them on two hands.  Now, I have no idea how many he has.  But he can speak in 6 and 7 word sentences.  He amazes me.  His therapists amaze me with what they’ve been able to teach him.  How they’ve been able to help Jack access the skills that he has that are blocked by behavior.  This will always be a struggle for Jack, but he’s learning how to help himself.  And many years after Early Intervention has left our lives, he and I will be forever thankful for what they have done for us.

The difficult part is knowing that while I am so utterly proud of Jack and thankful for the progress he’s made, there are so many families out there that will not experience the same successes.  It’s a spectrum. I feel guilty for being happy sometimes.  It’s hard to talk about Jack’s triumphs without thinking about those who don’t get to do the same.

This world has forever changed me.  Holland.  I love Holland.  (See my first post:  Welcome to Holland.)  I was devastated when I got here.  Now?  I am so unbelievably thankful that I get to be a part of this world.  It has changed my being.  This is where I belong.  Do I wish that I had opened myself up and visited Holland even before Jack brought me here?  Yes.  Do I wish that I could have found my passport without Jack having to be my traveling companion?  Absolutely.  But am I thankful that he gave me this gift?  More than words can express.  Holland is beautiful.  And it is where I want to be even if diagnoses are taken away or changed or whatever happens in my own backyard.

We all have a picture of what we want for our own lives, our families and especially our children.  But it is rare that we get all that we hope for or want.  That doesn’t mean that what we do have isn’t unbelievably amazing.

Fix you.

I think I’ve been on an autopilot for the last four months. Since the accident (see last post if unfamiliar) I’ve found myself with a lot more to handle, but not necessarily the time to process it all. Things sucked. Now they’re getting better. Big picture right? Be happy they weren’t worse…that’s sort of the theme of 2012. Push through. I’m too busy to find the time to freak out. Hell, I’m too busy to find the time to do anything. So busy, that when it came time to go to see my favorite band, Coldplay, in concert this weekend…I found myself trying to get out of going. The idea of going out late on a Sunday night made me feel old and tired. The amount of $ I had spent on the tickets (which I bought 6 months ago) made me feel guilty. The idea of doing something fun, that I’ve been waiting literally years to do, for just myself? Well, that seemed a little wrong too. I was ready to try to sell the tickets on Facebook, but my husband convinced me that when Sunday evening came, I’d be glad that I went.

He was right. But I had to get there first.

I’d been so busy, I didn’t even remember I was going to the concert until the week before. So when I was finally driving up to Boston, alone in my car (gasp!), I figured I should probably throw on my Coldplay CDs (well, plug in my iPhone, but I’m trying to sound less obnoxious) since it’d been a while since I’d last listened to them…might be nice to recognize some songs, haha.

And then I did the thing I think I’d been subconsciously avoiding doing for months. I listened to my favorite song. Fix you. If you don’t know the song, you really should listen to it. It’s musically beautiful. Just beautiful. But lyrically, it’s painful and gorgeous all at the same time.

As soon as the organ started playing I was crying. By the time he got to the chorus I was hysterical. And (if you know the song you know what part I’m talking about) when the guitars came in for this beautiful crescendo I was bordering on hyperventilating. I was sitting in stop and go traffic on the highway, but I wasn’t in my car. I was curled up holding my knees on the floor of the shower in a hotel in Boston listening to this song while my husband lay in a medically induced coma in the ICU. Never in any moment had I wanted to fix things so badly. I wanted to scream this song at him. Then I flashed to a time a month before the hospital when I was sitting in my van right after Jack’s diagnosis listening to that same song and crying, picturing my son, because so badly, all I wanted to do was “fix” him. I was so sad, because I shouldn’t want to fix him. I love everything about him, autism included. But at the same time, how could I not want to fix this for him?

And then I stopped crying. Because I remembered one more moment. About a month ago someone had given Alice a hand-me-down pink ballet leotard and skirt and she had been wearing it all day. I was in the kitchen making dinner, listening to music, and Fix You came on. She told me it was a beautiful ballet song and started dancing to it. She was so innocent, with such amazing four-year-old abandon, dancing her heart out on my kitchen floor. Her beautiful ballet dance. My beautiful girl.

“Lights will guide you home.

And ignite your bones.

And I will try to

fix you.”

- Coldplay

We all need some fixing. Some things take a lot of work. Some things feel like they keep breaking over and over no matter how many times you try to fix them. But none of us is broken beyond repair. Our fixers may come in all different forms….on this day, mine was a tiny pink ballerina.

P.S. The concert was AMAZING. Of course, they played my song. And yes, I stood there, my best friend hugging me…with tears streaming down my face…but happy ones.

( I was lucky enough that Alice let me videotape her dancing that day. Unfortunately I’m not tech savvy and don’t think I can upload my flip video because it’s the wrong file type. I’ll upload it to twitter/FB later today. )

It’s always darkest before the dawn.

Though life seemed chaotic, at best, it was manageable.

And then two months ago, it came to a standstill.

…and it has taken me this long to be “ok enough” to write about it.

My husband was in a car accident.  And what went from a “routine precaution” of medflighting him out (because the hospitals where we live aren’t equipped for traumas) quickly became anything but routine by the time I arrived at the hospital.  Things changed quickly in a matter of 4 or 5 hours…but in that time he went from needing to be monitored overnight to…well…to this conversation:

MD:  ”You’re asking me is he going to live?”

Me:  ”Yes.”

MD:  ”….probably.”

In the next couple of days it seemed like “probably” was optimistic.  I am 31.  My child was diagnosed with Autism a month and a half ago….and now I might be a widow.

And honestly that was just the tip of the iceberg.  Nothing like a crisis to bring down the landslide….and that’s what it was.  I had to figure everything out all at once and EVERYTHING was falling to pieces all around me.  I’ve gone through some tough times in my life….I’m not even trying to feel sorry for myself here or get anyone to throw me a pity party…cause lord knows I absolutely hate people fishing for sympathy….but if you know me at all, you know I’ve been dealt more than my fair share.

John spent 6 days in the Trauma/Surgical Intensive Care Unit breathing on a ventilator.  The first couple he was medically paralyzed because even on the ventilator he wasn’t getting adequate oxygen.  Then he got sicker, which I was told to expect….and then he had an allergic reaction to the antibiotics he was given.  I spent 40 hours straight without sleeping the first day(s)….lived in hotels, lived on Starbucks, desperately missed my kids, cried, didn’t cry, screamed, laughed, loved, hated, shut down, opened up…gave in…

My life was standing still.  Well, it felt like that inside, though everything all around me was still moving.  I was at the hospital organizing who would be with my kids 24/7, who would be present for Jack’s therapies each day, because there was no way I was going to have anything be out of the norm for him or Alice…you know, aside from the fact that their dad was sick and the doctors had to give him medicine to “sleep” so he could get better, and their mom hadn’t been home for more than 4 hours in the past 5 days…and I have an amazing family who came together to make sure that Jack and Alice were affected as little as possible.  Though, none of it made it any easier when I did see them and my daughter wouldn’t even talk to me because she was mad that I had to leave again and that she couldn’t talk to Daddy.

And then all of a sudden, just as quickly as he got deathly ill, John got better.  When I walked into his room on the morning of his sixth day in the T/SICU (after a particularly grueling night of being bounced around from hotel to hotel and eventually sleeping on a cot in a family room at the hospital) John was AWAKE and within a couple of hours extubated.  By that night he was moved into a regular room.  No rest for the weary, eh?

It was another four weeks before he would come home.  Not the easiest time of my life.  I was forced into being a single parent under the worst of circumstances.  John was “better” but the kids still couldn’t see him.  I had been gone for almost 9 days and Alice seemed weary that I was going to have to leave again….and Jack, no one could really ever explain to Jack where mommy and daddy were, so now it seemed as though he was suffering from some abandonment issues.  He would cry whenever I would go out of his vision, the most heartbreaking, terrified cry.  And bedtime…which by grace had always been the one thing that had been wonderful, was now quickly escalating into a nightmare…every night taking longer, until towards the end, we spent 3 hours one night of him and me both crying because neither one of us could do it anymore.  Daddy had always put him to bed.  Mommy just couldn’t do it right…

I was on leave from work, knowing that even when John came home, there was just no way I was going to be able to go back, and while financially that was a terrifying idea….emotionally, I wanted it more than anything.  We had been operating at a pace that we couldn’t keep up with.  I had been working nights so that I could have days to be with the kids and be present for all of Jack’s therapies….but that meant I never saw my husband and as a family we were almost never all together.  And I was running on empty.  I made the decision to leave my job after 10 years….and though I’m frightened at the budget I have to operate on now, there’s a small part of me that’s never felt better.  It seems crazy that it took all of this…..to help us see what needed to be done.

John has been home for 3 weeks now.  He is well, and back to work.  And by some miracle, Jack made such incredible progress throughout all of this.  I thought for sure we’d see regression but he actually had an explosion of language!  The speech pathologist came out to consult on him last week and actually said he doesn’t need her!

Slowly but surely things are getting, not back to normal…because I truly believe where we are headed is somewhere so much better than where we were.

Maybe it really is darkest before the dawn.

Sensory project

At his playgroup at EI, Jack pretty much refuses to do anything except play with cars on the circle rug….or run back and forth around the room.  He rarely can sit and attend (see, I am learning all these fancy clinical words, lol) to any of the activities in the room.  I feel like it’s going to be a long road to travel until he can do this…it’s just how he is in general.  Even at home, he just bounces from one task to the next…because Jack doesn’t want to do anything that is not on Jack’s terms. 

In particular he usually avoids the sensory table.  If he does go over he throws himself in up to his shoulders and heaves the contents up into the air and then takes off, leaving me with a hailstorm of rice in my hair. 

A few months ago, Jack’s OT brought out a mini version of the sensory table to try to get him used to the feeling at home where he’s generally a little calmer…but to no avail. He instantly dove in and chucked.  But that was pre-diagnosis Jack….and ironically, since his ASD diagnosis, he seems a little “better.”  It’s like he’s trying to make me look like a fool.  As soon as I told the doctors that he couldn’t do all sorts of things, he started doing them.  So when she brought it back out this week, it was no surprise that he played really well with it. 

So Alice and I made it our project today to make Jack his own “sensory bucket.”  Quite easy, and fairly inexpensive too. 

We used a slightly deep plastic tote and just filled it with a mix of all different types of dried beans, rice and pasta. 

And plenty leftover to replace what gets tossed onto the floor!

Then we raided my junk drawer and found a bunch of random spoons, measuring cups etc to use as “scoopers.”  And I remembered a stash of green coins that the leprechaun left for us last month, so we threw those in there for fun! 

Jack loved picking out the lima beans (my personal favorite from when I was young) and Alice spent her time trying to spell out her name with the teeny tiny alphabet pasta. 

And by using a smallish tote with a lid, we can take it in the backyard, to a friend’s house or with us in our camper! 

Hooray for the senses!

Happy World Autism Awareness Day!

It’s World Autism Awareness Day, and we are “Lighting It Up Blue” in our House.  We’ve got our blue lights outside, and we’re all wearing our Blue Autism Speaks shirts.  Alice and I even “improved” ours a little bit.  Twilight’s got “Team Edward and Team Jacob.”  The Hunger Games has got “Team Peeta and Team Gale”…and Autism has got “TEAM JACK!” 

Team Jack!

Such a great big sister!

Today for me is a day of knowledge, reflection and gratitude.  I’m proud to be wearing my blue and telling anyone who takes a second look what it is for.  I refuse to be embarrassed of my child’s actions when I am in public and others are staring at me.  It is too easy to be ignorant of autism.  It makes people uncomfortable, for themselves, for me….Get over it!  WE ARE THE 1 IN 88!  We are your neighbor.  We are your family.  We are everywhere.  If you pretend it’s not true, or if you pretend you don’t see us, or (and my personal favorite) if you pretend that it’s just a discipline problem, does that make autism go away?  Obviously not since the numbers are only increasing.  I was amazed at posts I saw on Facebook last week when the CDC announced the new prevalence rates of ASD.  I saw someone actually wrote “I thought the numbers were going down.”  If you think that, then you’re trying to not think about autism….but unless you are personally touched by someone who has it, or work in a field supporting those of us who are, I think most people probably are doing just that…trying to not think about it. 

It’s been 5 weeks today since Jack’s diagnosis.  Am I trying to pretend that 5 weeks ago I wasn’t trying to not think about autism?  No.  I actually was on purpose trying to not think about it because for 4 months we had been sitting on a waiting list to be evaluated, and if I thought about autism too much I was going to lose it.  But Jack’s not my first experience with the spectrum.  I have another family member with autism, so for years it has been a part of my family.  But I am embarrassed and ashamed that I didn’t do more to help promote awareness before the spectrum engulfed my household.  The best I can do is try to help other people understand and BE AWARE and to not be ignorant today.  None of us want to experience autism in any capacity…but ignorance will not make it go away.  Understanding, advocacy and respect are what we need.  And it’s not just what we, as parents, family members, and friends of loved ones on the spectrum need….it’s what the world needs. 

Today, on World Autism Awareness Day, I also find myself reflecting on our life since diagnosis.  Jack has started ABA, and although I have struggled with the ongoing fight to get hours and services, I cannot deny, that even with just a few hours, he is making significant progress.  He said his first sentence last week.  “I want cheese.”  I am crying now just thinking about it.  7 months ago, when he began EI, he had less than 10 words.  I made a list yesterday and if you count the names of all his favorite characters, he’s got 75.  My beautiful, gorgeous, brilliant baby boy can say 75 words.  7 months ago, I struggled every day to get him into his car seat just to go to the store and struggle to get him into a stroller again because without the harness he’d take off.  Now he and I can walk into Starbucks holding hands to buy a latte and a cake pop.  Those things that most people can take for granted are just absolutely priceless to me. 

And as my phone continues to beep with Facebook alerts today, of friends “liking” the photos of Alice and I in our homemade “Team Jack” blue t-shirts, or commenting on a photo I shared through Autism Speaks of a major world building aglow in blue lights, I can’t help but feel so blessed to have the support of so many people.  It has been amazing, the feeling of comfort that I have received from close friends, people I haven’t seen since high school or college, and through this blog, people I have never met.  Thank you for your support.  Thank you for your understanding.  Thank you for being aware.  Because we are just 1 in 88.  1 in 88 wanting answers.  1 in 88 looking for hope.  1 in 88 needing love.

Look me in the eye

I don’t make great eye contact.

I’ve known it for a while, but it’s a hard thing to try to fix.  I feel weird sometimes when I make eye contact for too long or am sitting too close to the person that I’m looking at.  It’s not something new for me, but until everyone’s focus became my son’s eye contact, or lack of, I didn’t really see that it mattered.

But it does.  How am I supposed to help my son make better eye contact if I can hardly do it?  What does it mean that I have a hard time holding someone’s gaze?  What does that say about me?  I never thought much about little “things” that I have or do…but lately, since all of my son’s little “things” are on display for the world to analyze, I’ve been thinking about my own.  Is my inability to do these things part of what makes him unable?  Does that fact that I unknowingly obsess over phrases, songs, or lists in my head have some clinical diagnosis attached to it that made Jack more susceptible to the same types of things?

I know that this is # whatever on the list of things that the clinical people say I will go through…blah, blah, blah, I didn’t give Jack autism.  I know.  I know that the one diet coke I drank (which can’t even be true because I was spastic about what I breathed, drank, ate, the position I slept in etc…) while I was pregnant didn’t do this to him.  But are there un-realized traits in me that I passed on, either genetically or through my everyday actions to my son?  I mean, my logic tells me that I have another child, who was here before Jack, that does not have autism, or display characteristics that I do or Jack does. In fact, aside from her freakish memory (which can get me into trouble because it is that good) she is the opposite of me in a lot of ways. But I think as a parent you’ll never stop questioning, no matter how logical you are, no matter what the books and the doctors and therapists tell you, what you could have done differently…what might have changed the course of your child’s path.

To some extent when you begin your journey in the world of early intervention you accept that your life becomes open to observation and discussion.   But it’s hard, once you know that your life is under a microscope, to realize that it’s not just your child that is being observed. I feel fairly certain, that it has been documented, or at least discussed by various doctors or therapists that “Mom does not make good eye contact.” That’s a difficult thing, to know that the professionals see behaviors or traits in you that are deemed problematic in your child.  What else do they see that I don’t?  Am I ready to hear the answer to that question?  How is it that I am willing to go to the ends of the earth and back for Jack to help him overcome, and yet I don’t know how to fix these things in myself?