"D Day" A year in retrospect

(Please click on the above song while you read... It's a multimedia presentation here, folks. You can thank me later. If you don't want to listen while you read, click on it at the end. It's one of my favorite songs and I guarantee it'll have you bopping along.)

June 14th marks exactly one year since Autism came into our lives. I've come a long way since the out-of-body experience that was Finn's diagnosis day. I'm pretty sure I've been through all 7 stages of grief and have now accepted autism as a lifelong companion (see last month's post "Accepting Ottsism"). I can't believe it's been a year. It feels like yesterday and 20 years ago all in one. To say it has changed me as a person is an understatement. But don't let that scare you. Or make you feel bad for me. I am better for having autism in my life. I am stronger. I am more determined. I am not afraid of labels... or being different... or walking a path that I didn't choose. I know you must think I'm really egocentric for talking about how autism changed ME! But it didn't change Finn. Finn is still the same little boy he always was. It changed me because it had to-- I have the most power to help him.

So on this, the one year anniversary of Finn's diagnosis, I am going to tell you how autism changed me...

I've learned a lot in the past year. At first I was reading books feverishly (and then crying myself to sleep at night.) I thought if I could find out everything about autism I could either debunk the diagnosis and move on or I could "fix" Finn and we'd go "back to the way things were." I know now, as I've said before, that there is no "fixing" Finn. There's no going back to the way things were. This is our "new normal," and accepting that has been a long, but cathartic road.

I see the bigger picture now.

When Finn was first diagnosed, someone told me to read a poem called "Welcome to Holland" (if you've never read it, I highly recommend it. It doesn't have to only pertain to special needs children. It can be about accepting anything in your life that wasn't "planned.") Of course, during this person's ill-timed recommendation I hadn't even realized we were in "Holland." I still thought we were in "Italy" (go read the stinking poem and come back. I'll wait...) Ah, you're back. Pretty good, right? Anyway, like I said, at the time I was in denial. I was about 3 months from realizing our "plane was diverted."  But now that I have, I see everything else so much clearer. I don't worry about things like birthday party themes and tee-ball uniforms. My priorities have shifted. I just want my kid to hold a pencil and make a friend without bopping him over the head while playing trains! That's all a mom can ask, right?

To say I've lowered my expectations sounds really awful. It sounds like I no longer aspire for him to go to college. Or that I've let myself off the hook for trying to raise a decent human being. Neither is true. I'm not going to let autism define or limit Finn, but I've changed my expectations to things that are more attainable right now rather than 14 years from now. Every little thing he does is not a precursor for whether he will go to college or be a good citizen someday. He may just be having a bad day. You see, when you have the child who is practically knocking kids out at school, it's hard not to feel like you are raising the next Unibomber. When your kid spits on you at the supermarket, it's hard not to tell the old lady in line to "take a hike" (along with some other superlatives I save only for ex-bosses). Instead of taking the blame for his behavior, I've lowered my expectations. I realize that some things, like grocery shopping or parades or gym class, are too overwhelming for him (and me) to handle, so I don't force him. Before autism, I would've just pressed on and forced him to comply. And that kind of "strong arm" parenting gets you nowhere when you have a child with autism. Don't get me wrong, I still slip into "because-I-said-so-Mommy" every so often, but I can't stay there long because a battle of wills is not something you want to get into with Finn! He definitely has more energy to rage against the machine than I do to resist it!

I don't look at "neurotypical" children and wish Finn could act like them. I don't think "what would it be like if... (insert "normal" kid thing here... "Finn were in a 'regular' Kindergarten." "Finn could play on the playground at recess." "Finn didn't have to wipe his hands with a clean dishtowel every time they got messy") I used to think those things. I mourned a "typical" childhood for Finn. It feels like a distant memory now. I'm over it. I have to be. Those thoughts are unproductive. They create resentment and that is a terrible place to live. I have to find joy in the every day, as chaotic as it is, because Finn is a sweet, little boy who loves big, learns big and (so be it) tantrums big! It makes the sweet moments that much sweeter. We appreciate the good days so much more than "typical" parents. And that, in my book, makes us better.  I don't have time to nitpick over aforementioned tee-ball uniforms, dammit, MY KID JUST WENT DOWN THE SLIDE WITH 3 OTHER KIDS!! 

Excuse me while I make a sports reference. I don't make them (ever), but I overheard this on Monday Night Football (or something) one time and I looked up from my Facebook induced stupor and took notice (which Joe will attest I rarely do during sporting events). The commentator said, "Quarterbacks have to have really bad memories." I never heard that before and thought it was so poignant. It makes sense. If the quarterback internalizes every bad play, every sack, every "Boo," he will self destruct and never have the confidence to win the game (complete the pass? What do quarterbacks do?... I'm kidding). So, I've taken that phrase and made myself the quarterback (sorry, Joe, we both know I'm team captain) and I find that if I can just forget the preceding tantrum... outburst... retaliatory smack in the face and move on, I can change his behavior and mine. It's really hard to do, but when I do it's the difference between a really bad day and a really bad couple of minutes.

Autism is my Super Power! It hasn't broken me, it's made me stronger. I can handle so much more than I ever thought I could, certainly more than I see other Moms dealing with (not that I'm judging because things aren't always what they seem). Do other families have it easier? Hell yes! Would I want those families as my family? Hell no! People say, "I don't know how you do it." And to them I say, "I just do." What choice do I have? If "doing it" were a conscious decision, well I presume "it" would never get done. But, somewhere deep inside, my body and my mind went on autopilot. I took about a month to be sad and have a pity party and then I realized what I already knew, that those thoughts aren't going to help Finn or me or our family. We are not "victims" of autism, we are warriors! Autism has given me a suit of armor. Before autism, I would've crumbled at Henry's CP diagnosis. It would have decimated me. Now, I take it one day at a time. I am ok that there is no "fix." Henry will show me what CP means to him just like Finn has shown us what autism is. I want what is best for my children even though that may mean never being "normal."

I'm thankful for autism. Not in an "it could be worse" kind of way, even though I know it could be and I am thankful for that! Rather, I am thankful for the humility autism brought me. I am constantly trying to improve my parenting approach. I have immersed myself in every possible therapy, diet, herbal supplement, behavioral approach and conspiracy theory. I have read books, subscribed to blogs and joined support groups. I have amassed a team of people including doctors, lawyers, advocates, therapists and teachers. I haven't done anything that any other Mom wouldn't do in my situation. I know because I've met those moms. Some of them have become my good friends. It is their footprint I walk in as I tread the path for Finn and our family. Like it or not, we are "in the club now."  (This is the most gut wrenchingly accurate account of what it is like to live with a new diagnosis I have ever read. This blogger is amazing. Take a few minutes if you can. It rocked my world!) If it weren't for autism, I wouldn't have opened my eyes to Finn's struggles and who Finn really is. I would probably be saying things like, "It worked for Charlie" and wondering why Finn simply can't "act better." Autism has forced me to realize that my kid IS different (as Temple Grandin says, "Different, not less"). Autism has forced me to not only accept those differences, but want other people to accept them, too. He has a lot going on in that tiny 4 year old body. He has anxieties even an adult probably couldn't cope with. He has sensitivities that make him feel post-traumatic. His behavior is not a result of "bad parenting." He sees the world differently. And thanks to him, so do we.

My son is different. Nothing in the world can change that. Because of him, I am different. I owe him the world for that.

"Promise me you'll always remember. You are braver than you believe, and stronger than you seem and smarter than you think." --Christopher Robin to Pooh

"Go as far as you can see. When you get there, you'll be able to see further." --Thomas Carlyle

"Kid, you'll move mountains, so... be your name Buxbaum or Bixby or Bray or Mordecai Ale Van Allen O'Shea. You're off to great places! Today is your day! Your mountain is waiting. So... Get On Your Way!"

Accepting "Ottsism"

A few weeks ago, we went for Finn's long awaited 2nd opinion at the Regional Autism Center at CHOP. Thank your lucky stars you've never needed to see a Developmental Pediatrician because the waiting list is about as long as Santa's naughty list. The good thing about having to wait over 10 months for a doctor's appointment is it gave me time to do my research. Originally, we wanted a 2nd opinion so we could prove the 1st diagnosis wrong. Now, we accept the diagnosis. We see it. We live it. Every. Day. 


Time gave me the ability to really learn about Autism and what it means in our child. I went into this appointment with knowledge instead of incredulity, looking for help instead of a miracle. 


The appointment went really well and I really liked the doctor. She gave Finn an intelligence test, which he did exceptionally well on. She said she couldn't stop the test until he got 5 wrong, so it took her a while! I was proud to see our boy, who normally struggles with so much, do so well on something! 


We broke for lunch and Finn and I went to a corner deli for lunch. I really enjoyed getting to be with Finn alone. While eating, I looked over at him and said "Isn't this a nice date, Finn?" He said, "This isn't a date, Mommy, it's a doctor's appointment." He's a stickler for the rules. 


When we returned, the Attending doctor came in to talk to us. She spoke to Finn for a few minutes, then turned to me and said "You believe the diagnosis, right?" I said, "Yea, I do." She said, "Because I see it and I've been talking to him for 5 minutes." She continued to say that his official diagnosis would be changed from PDD-NOS to High Functioning Autism. It means nothing to the man on the street and it shouldn't mean anything to us, either. It's just a label. The diagnosis is what rocked us, but we accept it now. We own it. We have to. It's our boy. Autism is our boy. And we love him, so how could we not love it, too?

This was our front door for Autism Speak's "Light it Up Blue" 

When we got home, I said to Finn, "Did you hear anything Mommy was saying to the doctor?" He said, "Yea, you said 'Otts' a lot." (Which is funny because in Temple Grandin's book, she said that people with Autism usually only hear the beginning or end of a word, that's why it's important to speak slowly) I said, "You mean Autism?" He said, "Yea. What is that?" I said, "It's just a different way of thinking." He said, "Oh." Not exactly a groundbreaking talk, but we were dipping our toes in the water. 


So, in honor of Autism (Acceptance) month, I got everyone in our family an "I love someone with Autism" button. Charlie and I wore it to school for an Autism presentation I did for his class. When we got home, Finn wanted to wear the button and asked, "What does that say?" Charlie told him, then Finn said, "Who has Ottsism?" Charlie came running into me because he didn't know how to answer him. I wasn't prepared to do a "big reveal" to Finn at that particular moment, but I didn't want to lie to him, so I held my breath and said, "You do, Finn." He said, "So, I love myself?" 

Charlie's class after our Autism presentation. 

Since then, Charlie has really been laying it on thick. He says, "Finn, you know what makes you awesome? Autism!" I guess I can't blame him. We've been whispering about it for so long. He's just happy to be out in the open about it! 


After I did the presentation in Charlie's class, he went to his old kindergarten teacher's class and did the presentation with them. He read a book about accepting kids with Autism and talked about being a good friend. Mrs. DiGenni said the kids were telling stories about kids who aren't nice to them. Charlie told them "there's a difference between Autism and kids who aren't nice to other kids!" He is wise beyond his years! But we already knew that!

This is Finn with his 1:1 aide Miss Merry today. 

I went into the boys' school to participate in the "Blow Bubbles for Autism" event today. I didn't think Finn would come out because the whole school was out there, but Mrs. H said she was going to try. To my surprise, out walked Finny! I was so proud of him! He was in good spirits until Charlie's friends started calling me a cheater for using a bubble machine (instead of blowing the bubbles the old fashioned way!) Finn yelled "Don't say that to my Mommy!" Loyal as a pitbull, that boy! Then the bubble blowing started and Finn got upset because someone "blew bubbles on him." Eh, you win some you lose some! I was just glad he came out! 


I later told him that all those kids came out to blow bubbles for him! He liked that. Believe it or not, he's come a long, long way in a very short time. He has really started to control his anger and use his words. I sometimes forget that he's still only 4 years old. I'm pretty sure I, myself, was still having temper tantrums at 4! We've had some amazing road trips the past few weekends and the summer is starting to look very hopeful for us! 


In this month of Autism Awareness (and Acceptance), we feel at peace with where we are in life. We have a son with Autism. We accept him for who he is. He may not behave perfectly. He may offend the old lady at the supermarket. But what's on the outside is only half his story. He has a heart of gold, a smile that could light New York City and the greatest laugh you've ever heard! We wouldn't change a thing!

Autism Presentation

The Falcon Film Files: The Falcon's Guide to Best Picture / Best Director for the 84th Academy Awards

The Falcon Film Files: The Falcon's Guide to Best Picture / Best Director for the 84th Academy Awards