Any Given Sunday

Two years ago, when Charlie made his First Communion I was overjoyed and so proud. But a little voice in the back of my head said, “Will this ever be Finn? Will Finn ever be able to stand up there in a scratchy suit with other kids standing that close to him? Will he ever be able to go to CCD?”

Two years ago, Finn was in a self contained classroom. He was still overturning desks and tearing up school work. There was no way I was ever going to get him to go to CCD. So, on the day of Charlie’s Communion, I beamed with pride for Charlie and I cried a silent tear for Finn. Because I never imagined what the future held.

In the beginning, Finn couldn’t sit still for mass. He would push the chairs and fidget in his seat. One week, he sat on the floor in the aisle. I tried my best to look the other way because he wasn’t bothering anyone and he was, afterall, being quiet, but an elderly parishoner made a comment about “Jesus showing him the way” and I packed them up and left.

Taking the kids to church has been a labor of love for me. I didn’t always want to do it, but I did it anyway. There were many times when I’d look around the room for a friendly face to acknowledge how hard I was trying. A sympathetic smile from an older mom who had once been in the trenches like me. Some weeks that face smiled back. Other weeks it didn’t.

But we kept going anyway.

We’ve used token boards and the promise of donuts after church to get us through. And the first week that Finn attended the children’s liturgy with Charlie, I almost fell out of my seat!

So we kept going.

And soon, church didn’t feel like such an unfamiliar place. The priest knows us and so does the Religious Ed director. It has become part of Finn’s routine and he likes it. (He’ll never admit it, but I know he does! If not, at the very least, for the donuts! Oreo crumble from Shop Rite, please?)

Each week, he followed me up to Communion and said to the priest “I want to taste the potato chip.” The priest always gave him a blessing and me a knowing smile. And finally, baby steps along the way have led us to this:

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My boy made his First Communion! And he didn’t just do it, he rocked it! He even took up the gifts! He didn’t just wear the suit, he didn’t want to take it off! Two years ago, I couldn’t have imagined him wearing a scratchy suit and dress shoes!

I wish I could’ve told the me who mourned the idea of Finn making his sacraments of this day. I wish I could’ve known that nothing was going to keep his light from shining. I wish that someone could have told me that everything was going to be just fine. But I never would have believed it. And it wouldn’t have kept me in the fight. Chipping away. Every day. Helping my boy find his way. I’m grateful for our struggles because they make days like these so much sweeter.

On a cold day in January, Finn made his Reconciliation (we used to call it Penance back in the day.) I was unbelievably proud of him that day, but I didn’t write about it because, well, I’m a slacker. But I wanted to tell you about a song they sang because it was so moving and poignant to how I feel about Finn. It went something like this:

Way beyond the stars;
Far beyond what I can see.
Your love has no end,
and it reaches out to me.

Lord, nothing in this World,
in all the Universe;
Nothing, could keep me from your love, Lord Jesus.
No matter what I’ve done,
Whatever I go through;
Nothing could keep me from your love,
Nothing coould keep me from you.

I had to choke back my weepy mom sobs as he stood in front of the church and sang that song. I was so proud of him. I would move mountains for him– only it seems he doesn’t need me to. He can move them all by himself.

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Crazy faces before Communion!

Surrounded by (almost) everyone who has loved and supported us through it all.

Surrounded by (almost) everyone who has loved and supported us through it all.

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Diagnosed and confused: A guest post for Pioneer Momma

When my son Finn turned 3, we went to his annual well appointment. He was walking around the room on his toes, grazing every curious surface he could reach. The doctor asked the usual litany of questions and asked if I had any concerns. Sheepishly, I said, “He has really bad temper tantrums… for like an hour.”

“Uh huh,” the doctor replied, “that is very typical 3 year old behavior.” I jokingly retorted, “You don’t understand. I think his head spun around.”

She just stared at me.

“You know… like in the Exorcist?”

Crickets.

I left that appointment feeling frustrated and desperate. Could all these meltdowns really be “normal?” Were other parents of 3-year-olds this frustrated and confused by their child?

The rest of this post can be found over at my new friend Ashley’s blog called a Pioneer Momma. I was the guest blogger today, so please click here to continue reading the post. And while you’re there, check out the rest of her blog. She’s down to Earth and really inspiring! You can also enter to win a really adorable Christmas craft she created here.

What I’m thankful for… autism edition

I reached into the cabinet to get bowls for the kids’ morning cereal. Yellow Crayola bowl for Finn. Anything pink for Tallulah. And whatever bowls I find for Charlie and Henry. The predictability of Finn’s needs have become second nature. One of the many battles I choose not to fight.

Only this particular morning was different. Finn wanted to get the bowls. He reached in and got everyone’s bowls (which in and of itself was a miracle). He got three, thoughtfully-chosen bowls for his brothers and sister and picked out a Mickey Mouse bowl for himself. I stood there, awestruck. He didn’t pick the yellow bowl. He didn’t need to have the yellow bowl. He chose a completely different bowl on his own.

There was once a time when Finn would be so frustrated at not having the yellow bowl that he would throw himself on the floor in a full meltdown. Writhing around and crying. Screaming, but never saying why. I, at the time, did not know that he NEEDED the yellow bowl. He, at the time, was too frustrated to tell me it was the yellow bowl he NEEDED.

His meltdown was his communication. Only I didn’t know what he was trying to say.

He pushed. I pulled. Was it the cereal? Was it the spoon? Did I pour too much milk? Was there jelly on his chair? Until one day, I figured out that the yellow bowl is what made him happy. And so I hand-washed the yellow bowl every day.

Such is the life in an autism household. Once we figured out what caused the meltdowns, we did our best to avoid them. We were in such a habit of avoiding the triggers, we never bothered to figure out if they still were… triggers.

And that’s what happened with the yellow bowl. Finn grew out of his need for the yellow bowl. And life goes on. One less thing that upsets my boy. Yahoo!

Finn’s victory over the yellow bowl got me thinking, though. People all over Facebook are posting what they are thankful for every day in November.

I wanted to do my own version of what I am thankful for… autism style. And while I’m sure I could come up with 25, I thought I would keep it short and just give you some highlights.

We have made so much progress over the past few years. Progress that was hard fought, in some cases. But, I always find that the best perspective is found in hindsight, so here goes…

1. The yellow bowl- See above. Getting stuck, but not being stuck. Sometimes, if we stay in one place long enough then we can move on. I was fully prepared to have to pack his yellow bowl for college. Turns out, I don’t have to.

2. Finn walking completely flat footed- “Ohhh, he’s a toe walker?” Yea, he’s a toe walker, so what? It was something so innate to who Finn was, it never occurred to me to think it was a problem or a symptom of autism. In the years since his diagnosis, we’ve had every specialist try to correct the toe walking, for fear it would shorten his Achilles tendon and require invasive surgery in the long run. We’ve been through Physical Therapy, MAFOS (leg braces), Botox surgery and finally serial casting. I told Finn’s Orthopedic Surgeon that I would believe it when I saw it, and I am simply amazed! He NEVER walks on his toes anymore! Hallelujah! (I have been meaning to write a post about Finn’s serial casts because I think it would really benefit some people who are looking for the information. When I Googled it, I couldn’t find much on serial casting as it relates to autism. I will write it someday, I promise!)

3. Finn going to the bathroom by himself in the morning without waking anyone! Normally, Finn wakes Charlie at 5:30 a.m. because he is too scared to go to the bathroom alone. Charlie sits on the tub and reads books to Finn while he goes to the bathroom. Every. Single. Day. (I know, brother of the century, right?) But for the past 3 days, Finn has woken up completely on his own and let Charlie sleep! THIS IS HUGE! We have been rewarding Finn immensely for this and I am hoping it continues. We could all use to get a little more sleep around here!

4. Finn being back in his General Ed classroom 100%! I wrote about it the other day (click here if you missed it.) It is something that just will not get old for me. The way he follows the classroom rules and engages with his friends. It is a vision of beauty that only another autism mother could understand.

5. Finn naming “5 best friends” in his class! Um, duh. Do I even need to elaborate on this one?

6. Having nothing to fight for at the school. See #4 and #5. If Finn’s happy, then Momma’s happy. And if Momma’s happy, everybody’s happy!

7. Perseveration- Perseveration is one of those “tell tale signs” of autism. It’s one of the last things I chose to recognize in my boy. When the doctor asked, “Does he fixate on one specific thing like an inanimate object or a specific subject matter? Does he have any special collections?” I felt insulted. No, he doesn’t collect human body parts, if that’s what you’re implying. It made me feel weird, like I was harboring a psychopath. Well, yes, he carried around a small plastic reindeer for about two months and then cried like the dickens when we lost it on the beach. And, yes, he had to read the same “Little Red Caboose” book over and over for a short time, but he eventually moved on. And, oh yea, we watched “The Polar Express” well into the summer, but, who cares? But now, instead of seeing Finn’s “perseverations” as symptoms of his autism, we see them as things that bring him joy. We, as a family, have embraced his “obsessions,” which currently include lighthouses, and enjoy taking family trips to see them. I am also so thankful to the many friends who have joined in on Finn’s interest in lighthouses, including Pam C., Betty P-M, our neighbor Roger, and Kate S who have sent postcards, snapped photos, snagged brochures, bought souvenirs and otherwise made the day of one lighthouse-loving 6 year old! I can’t tell you how much it means to us!

8. Health insurance benefits that cover ABA therapy- Trust me, I know how lucky we are that Joe has a job which falls under the NJ mandate to cover ABA therapy. I know how expensive it is to pay for this type of therapy out of pocket. It is an utter outrage. One that I am thankful to not add to my list of things to be outraged about.

9. Finn brushing his own teeth! Again, this might be one that only other autism mothers can appreciate. But, if you knew what a sensory nightmare brushing teeth once was for us, you would understand how huge it is that Finn brushes his own teeth! From squeezing the toothpaste onto the brush (Yay, fine motor skills!) to actually brushing all his teeth (and quite effectively, actually, he had no cavities at his last checkup!), the entire thing is a miracle! He was never able to tolerate ANYTHING sticky or gooey on his face. Now, he doesn’t even wince! He is still very meticulous about the positioning of his Dixie cups on the counter and swishes and spits a certain amount of times every night before he’s satisfied, but hey, we all have our routines!

10. Finn riding the General Ed bus without an aide! Riding the Gen Ed bus was completely Finn’s idea. I don’t know that I would have pushed for this one on my own… the bus can be a little rough. But, he wanted to be with Charlie, so I fought for it. The school gave him an aide for six weeks and then took it away. I decided to choose my battles. See # 6. It’s going well so far. (Except when Charlie’s absent, I have to drive Finn to school, but who’s counting?)

11. Finn letting the twins play in the playroom- I know this sounds absurd, but for the first two years of Henry and Tallulah’s lives, he wouldn’t even let them step foot in the playroom. He still gets upset when they mess things up, but the other day, the four of us played trains (Finn’s trains) on the floor in the playroom. It had to be on Finn’s terms, but it was a giant leap, trust me.

12. Finn’s teachers and aides- I wrote about his pre-school teacher and aide last week. They taught him to feel safe and love school again. And his kindergarten teachers and now first grade teachers and aides are teaching him to be a good student, person and friend. Forget the IEP, the teachers and aides make all the difference. They just get it. They get Finn and I am so thankful for that! When Finn was the only one who didn’t wear a costume on Halloween, nobody cared. When Finn wanted to stay in the classroom during the Halloween parade and do math worksheets, his aide obliged. (See what I mean? They get him!) Finn is reading on grade level and doing math enrichment. This is light years ahead of where we were this time last year when he wasn’t even in the Gen Ed system to get a report card!

13. Joe being the best Daddy- Joe never skipped a beat when Finn was diagnosed. He never took it as hard as I did. Autism didn’t scare him. Despite how uncertain those times were, Joe never faltered in his belief that everything was going to be ok. He carried the weight for all of us for a while. And he always knows exactly when I am at the end of my rope and jumps in and saves me every time.

14. Our supportive friends and family- I don’t know where we’d be if it weren’t for the love, help and support of our family. My sister Suzanne who is my sounding board for everything. My mom who always sees the best in us and jumps in to babysit or have sleepovers whenever she can. My Dad, who from the start, took a big interest in understanding what made Finn tick and has really changed his expectations of all of us. My other siblings, Kelli, Colleen and Chuck, who have been there for us in every possible way, from being a listening ear or a shoulder to cry on or a drinking buddy or a financial analyst. And our friends, who are more like family, who just get it. Like, Pam, who will jump into a pool at a moment’s notice if Finn screams that something is too close to the filter! And Christine (our babysitter / Mary Poppins / adopted child) who stays with our kids whenever we need her and is one of the best 22 year olds I know! Our kids think of her as a sister (and a constant “nuggling” companion on our couch!)  It truly takes a village.

15. Finn saying “I love you”- Finn has always been verbal, but I realize that others on this autism journey communicate differently. It is not lost on me that I am extremely lucky that in addition to the things that I wish he didn’t say, like “I hate you,” “You’re the worst Mommy ever,” “You’re toots,” and “You’re rude,” he can also utter the sweetest three words a mother can ever hear. On our most challenging days, we end our night curled up in bed and all it takes is “I love you, Mommy” and I am ready to do it all again tomorrow.

16. Perspective- It’s a gift only time can give. I wish I could have told the scared Mommy who heard the word autism two years ago how much progress her boy would make in two short years. That fear and sadness have their place as long as they are a catalyst for change. That progress is possible. And it’s astounding and beautiful. But I guess I had to live through it all.

Just to see it for myself.

Finding our way, but never LOST: This is Autism

When my 3 1/2 year old son was diagnosed with autism, I spent the following weeks reading books and crying myself to sleep. I didn’t understand what the Doctor saw that made him autistic.

I feared the A-word.

I saw autism as an attack– an insult on my beautiful boy. I realize now that what I saw was Autism Speaks’ autism. The autism according to Suzanne Wright’s “Call for Action” that causes “families to split up, go broke and struggle through their days and years.” The autism that causes us to lose our children.

I kept expecting to see something different in his eyes– like a light that extinguishes. But it never happened. We didn’t lose him to autism. We found ourselves.

His autism taught us to be more patient. His autism taught us to relish in the good moments. His autism taught us to adapt, be more flexible and see where the road takes us.

We may have had some missteps along the way, but we have never been lost. We are exactly where we are meant to be.

In the years since those early, fear-filled days of Finn’s diagnosis, I have found joy and hope. Clarity and confidence instead of fear and doubt. Instead of attacking autism, we have embraced it. Autism isn’t something about Finn that we need to change. It was something about us that needed to change.

We see the world through his lens now.

And the view is beautiful.

This is autism. 

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This post was written as a part of the “This is Autism Flash Blog” and is in response to Suzanne Wright’s misrepresentation of autism in her “Call to Action.” I am honored to be part of such a wonderful community. Together, we can change the world!

“D Day:” 2 Years in Retrospect

There was a time when I didn’t want to ever hear the word again. There was a time when it was the only word I could think of. But here we are, two years later, and I have found a happy medium. Finn’s autism is not a mask that disguises who he really is. His autism is not a burden that we shoulder. (And it certainly isn’t a cape that makes his mother a Superhero, although some days I wish it would!) Among its great, many challenges, we have found just as many unexpected gifts.

So on this day*, I commemorate the day Finn was diagnosed with autism.

I remember the day like it were yesterday. Summer was just around the corner. Charlie’s Kindergarten year was winding down. The outfit (socks with thong sandals, ew gross!) the psychologist wore. And then it all crashed down around me. I described it as “little birdies chirping around my head.” I felt shattered. Betrayed. Scared. I felt guilty that I didn’t know sooner. I lived in a sad place for what felt like an eternity, but amounted to about 3 months.

Since those scared, early days, I (and Finn) have come so far. It took a few months, but I emerged from my fear-induced stupor and began embracing autism. I no longer wanted to debunk the diagnosis. I needed to accept a new normal and look at my child through a new lens. And the single most helpful thing that I did was find autism bloggers– other moms who have autistic kids, other adults who have autism.  I stopped letting books tell me what to expect from my child and started letting Finn tell me. And I let those other moms fill the holes of my heart with hope.

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With the help of other writers, I found my own definition of autism. And it is not something to be feared or dreaded. It’s funny because I vividly remember Finn’s 3rd birthday. I knew the “red flags for autism” and that most of them were evident by age three. I remember thinking we “got passed” the red flags. I thought, “he hasn’t regressed or lost skills. He responds to his name. He doesn’t spin or stare at moving parts. We are ‘in the clear!'” Those ridiculous red flags for autism are precisely the problem. They perpetuate the fear. They prescribe to this “all or nothing” mentality that makes you feel like if your kid “passes” you’re golden, but if he doesn’t, you’re doomed.

I wish I could go back to Finn’s diagnosis day and choose a different path. Not for Finn, but for me. I wish I could’ve told myself how fruitless reading books and combing the internet would be. How reading lists of deficits and assigning characteristics to a disability are detrimental to everyone involved. I expected the diagnosis to tell me more about my child– more than I already knew. I looked at the diagnosis as a prescription for what my child could and couldn’t do. How could I have done that to a 3 year old? Everything I needed was sitting right in front of me. A little boy who needed patience, love and understanding.

Who doesn’t need that?

I, like so many other mothers out there, went searching for a person, child or adult, who “looked like” my child. Someone who could make autism “look like” something that Finn would grow to be. I now know how ridiculous that is. There is no adult out there that is Finn in 20 years any more than there is an adult who is Charlie or Henry or Tallulah’s future selves. It’s absurd!

When Finn surprises me by something he does (like ask Charlie if he needs help or apologize when he saw my swollen face after a root canal) I realize it’s because I had a very limited (an unfair, socially prescribed and mainstream) view of what an “autistic” person does. Subconsciously, I allowed those narrow views of autism permeate my thinking. instead of seeing my child for who he is– autistic or not. Not everything he does falls into one of two categories: autistic or neurotypical.

His skills are not stagnant. He is still a little boy who will grow and learn just like any other child. Yes, some stages take a little longer to get through and sometimes his skills regress, but I refuse to let a label tell me what to expect from my kid. It’s as if at Finn’s birth the doctor gave me a list of things that Finn would only be able to do since he were a boy, like “play with trucks, date girls and grow up to be a construction worker.” It’s insane. I don’t know why I ever let anyone make me assume one set of expectations of my child simply because he has autism.

I said it last year, in my first “D Day: A year in retrospect” post, and I will say it again, I am thankful for autism. It has made me a better parent. It has broadened my perspective of parenting, and humanity, and gratitude, and life. Some paths in life we choose. Some paths are chosen for us. I am happy all the same.

* Editor’s note: The actual day is June 14th. I just got around to finishing this post today! 

HighFunctioningMomism celebrates 1000 Ausome Things #AutismPositivity2013

Don’t feel bad for me because I’m raising a child with autism.

Don’t feel bad for me when I tell you that our lives are changed forever.

My perspective on life and love and marriage and children is changed forever.

And for that, I am forever grateful.

I have always wanted kids. I went to college, even to grad school, and my only aspiration was to have a family. I always knew that my most successful title would be “mom.” I just never knew that “special needs” would precede it. I would’ve never chosen this life, but I wouldn’t trade it for the world! A life without my son, and his autism, would be a half life. Life before autism was  black and white and this is definitely Technicolor!

Accomplished milestones are greater. Spoken words are sweeter. Tender family moments are… tenderer. A simple “I love you” is enough to make my world go ’round. Is it incredibly difficult and challenging? Yes! But, nothing worth anything in this life comes by taking the easy road.

I don’t resent or regret a single moment of this life. Finn has taught us things in the two years since his diagnosis (and his five years of life) that I would’ve never learned in a lifetime.

Some moms wish for her kid to hit a home run. I wish for my kid to pick up the bat. And when he does, I cheer louder than any of those home run moms!

Autism has opened my eyes to a better life. Autism has given my life depth and perspective.

How could you not enjoy this view?

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Finn batting with his own bat and a hand pitched ball! I couldn’t be prouder!

And THAT is what’s “ausome” about autism!

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This post was a part of something that is so much bigger than me. Please click over to The Autism Positivity Flash Blog and read about other people who are seeing the silver lining and the blessings that come from living, loving and being autistic.

Sticks and stones and invisible disabilites

There was a fundraiser in our town tonight for a school friend of Finny’s. Lots of people in the community were going and we didn’t want to miss it, but we didn’t know how Finn was going to handle it. It was at a restaurant with a bar and lots of people. We prepped him before the event and told him it was for his friend Charlie whose house burned down. He agreed to go and was excited that “there was going to be food there.”

Finn fell asleep on the car ride over.

We should’ve just turned around and gone home. We should’ve known it was a recipe for disaster.

As we walked up, we heard music coming from inside. Finn wouldn’t let go of my hand. We coaxed him through the door, but he wouldn’t cross the threshold once inside. I immediately offered his noise cancelling headphones, which he accepted. But he was already gone. I sat with him while Joe took the other three kids to put our stuff down and check out the Chinese auction.

Finn wearing his noise cancelling headphones. Obviously, this picture was not taken at the fundraiser.

Finn wearing his noise cancelling headphones. Obviously, this picture was not taken at the fundraiser.

I tried to do the “Finny wash” (a deep pressure massage all over his body while I sing to the disco tune “At the Finny wash, doot doot doot doot doot doot doot.”) But that only agitated him more.

Joe tagged in and I took Charlie, Henry and Tallulah to put our tickets in for some prizes.

It was getting more crowded and I knew if we had any chance of getting Finn in the door we needed to do it soon! So, Joe went to sit with Finn and Tallulah while Charlie, Henry and I went to get some food.

It was communal seating and Joe had moved tables twice just to find the “right” spot for Finn. He finally sat down at an older gentleman’s table with five available seats. I returned back with the food to find Finn nervously shifting in place  by Joe. He was beyond agitated. He was still wearing his headphones, but it wasn’t helping. Nothing was right for him. The seat wasn’t right. The food wasn’t right. “Mommy, stop eating 2 noodles at a time. That’s gross.” I offered him meatballs (his favorite), rolls, sausage. No. No. No.

He was complaining that his feet hurt. (They have been bothering him since he got his serial casts off. He has trouble standing for long periods of time.) I offered him my chair, but it was no good. I offered to take off his shoes, but that was no good either.

I was at a loss.

And then. The old man sitting across from us, who had apparently been watching our entire show, said to the other gentleman sitting next to him, “Well, this boy isn’t very happy tonight.”

He said it loud enough for me to hear.

I looked up and suddenly realized there were  five older people sitting across from us just staring at our debacle.

All the color drained from my face as I stood there jilted and stunned. Did he mean to say that so loud? Was he being malicious? I was immoble. Do I say something? We were at a benefit for another special needs child in our community. I thought we were in a safe place. Joe saw the look on my face (and probably the steam coming out of my ears) and said, “Shan, go get us some drinks. Go get us some drinks!”

I was seething, but I walked away. I mean Finn was wearing noise cancelling headphones for God’s sake. Isn’t that the universal sign for… I don’t know… something? I know that this man was older and  probably never heard of the word autism, but we didn’t deserve that. Couldn’t he see that we were trying? Couldn’t he see that we were floundering? If only he knew just how hard we worked to even get Finn in the door. If only he knew just how hard we work to do anything.

I have an autism awareness pin that says, “My child has autism and sometimes can’t control his behavior.” I bought it to wear on my bag at church, so that the dirty looks would stop. I’ve never had the courage to use it. Because I sometimes resent having to be a billboard for autism. I wish I didn’t feel the need to explain every “unacceptable” thing Finn does to every judgmental passerby.

That ends today.

I knew we had to leave the fundraiser from the moment we walked in. It wasn’t right for Finn and therefore, it wasn’t right for the rest of us, either. That was a long, excruciating hour for Finn and I regret putting him through that. I feel bad that the man saw and judged Finn when he was in such a bad place. He saw the messy, anxiety-ridden face of autism today and missed out on meeting my beautiful son.

His loss.

In the name of autism awareness

Last week, Joe’s high school Student Council raised $2,000 and donated it to our local autism support group. I wanted to do my part to raise awareness, so I created a presentation board to display at the event.

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In my effort to show the things an autistic person might do, I didn’t really show what Finn might do. As parents and advocates, we try to spread awareness in the name of autism. But simply getting the word out there isn’t enough. Autism is still so mysterious. Even the “puzzle piece” symbol brings an aura of mystique. Is anything more puzzling than, well, a puzzle piece?

It got me thinking…

Autism awareness month is less than two weeks away; what can I do to make autism seem less confusing? How can I ease the fears of parents with newly diagnosed children? Even if I only help one other mom (like my friend whose son was recently diagnosed), then maybe she wouldn’t have to cry herself to sleep wondering what autism means to her boy. Maybe she wouldn’t feel so devastated by the diagnosis.

As the parent of a child with autism, I (and many others) feel a great responsibility to educate people about our children’s differences, so that someday those differences don’t feel so, well, different.

The problem, however, is that our children’s differences ARE so vastly different. They say, “When you’ve met one person with autism, you’ve met one person with autism.”

How do I explain what autism is like, when all I know for sure is what I see in Finn? I could tell you about our autism, but then you’d think every kid with autism is crazy-good at math and likes to call shampoo bottles “Mooks.”

Autism Speaks does “Light it up Blue” to increase autism awareness, and that’s great. I mean they’re lighting up Christ the Redeemer and the Empire State Building, for goodness’ sake. But statistical awareness of autism is only a small step toward understanding.

Autism Speaks also has a “Learn the signs of autism” campaign, but it doesn’t tell people what the signs are. Unless, of course, you go to their website and then you are completely and thoroughly overwhelmed!

The CDC has a “Learn the Signs. Act Early” campaign, too. But, what does “knowing the signs of autism” do to educate a nation of people struggling to understand autism in the wake of the Sandy Hook tragedy?

If we want people to understand what autism is, then we have to start showing them the PEOPLE, not just the statistics.

There are so, so many misconceptions about autism. “Autistic people lack empathy…don’t look you in the eye… don’t like to hug… aren’t affectionate.. speak in a robotic affect… cover their ears… have savant-like talents… are obsessed with watching moving parts… can’t read facial expressions… have no imagination… like to watch ‘The People’s Court.'” (I was kidding on that one.)

I could go on and on. Do some autistic people do some of those things? Yes, but not all! There is no one thing that all autistic people do. Autism is as diverse as humanity itself.

Therein lies the problem.

In our best efforts to tell others what autism looks like, we speak of its “symptoms” or “characteristics.” These symptoms are really the manifestations of other conditions inside the autism spectrum and vary so greatly from person to person. Just within sensory processing disorder alone, the symptoms can vary so widely. Some people with autism are sensitive to loud noises, some to bright light, some like to touch things, some hate it, some are clumsy and have poor body awareness. So, to say, “People with autism cover their ears,” is only true if that person is sensitive to sound. It doesn’t mean that person doesn’t have autism, and it doesn’t mean that all people with autism are sensitive to sound.

The same is true for so many of the “typical” things autistic people do. But I worry for the parent researching to see if her child has (oh no, the dreaded) autism. She sees that her child doesn’t do those things, checks it off her list and moves on. Her child remains undiagnosed for another six months or a year or forever. And that mother trudges on trying to fit a square peg into a round hole.

Finn clinging to Charlie on the first day of school.

Finn clinging to Charlie on the first day of school.

When we were first grappling with Finn’s new diagnosis, I wrote a blog post (for my then, personal, family-only blog) in which I said, “Instead of donning an ‘Autism Speaks’ puzzle bumper sticker, I want one that says ‘Don’t stare and give me parenting advice when you see my tantruming child!'” I didn’t feel that the autism portrayed by the diagnosis or the media or in my preconceived mind, was my child.

In the years since, I’ve come to realize that a lot of other parents feel that way, too. So many different things contribute to what “autism looks like” on each child. Not everything Finn does is because of his autism. Some things are purely Finn originals. He is not a walking, talking billboard for autism anymore than I am the spokesperson for all Irish redheads.

In the short two years since Finn’s high functioning autism diagnosis, I have done what I can to spread awareness. I started this blog for one, which is probably (and hopefully) the widest reach I could have. On a smaller scale, I go into the boys’ school in April, and I volunteer my knowledge of autism. Usually, that involves reading to Charlie’s class, wearing my “I love someone with autism” button and providing literature to other teachers.

It doesn’t feel like enough, though.

So, here we are staring down the barrel of another “Autism Awareness month,” and what do I do? Do I tell people “know the signs of autism” even though when Finn was one year old, I would have never “caught” the red flags? Do I tell people about “common symptoms of autism” even though it is a misnomer? How is that helping you understand my child’s autism? I am painting a picture of autism that he doesn’t even personify. I’ve come to realize that none of us thinks our child personifies autism. Autism doesn’t “belong” to any one type of person or set of characteristics.

I can’t just tell you Finn’s characteristics and hope that you’ll see them in another person and think, “Perhaps I should be more understanding  because this person might have autism.” I can tell you this, “Be more understanding to those who appear different. Be more understanding to those who appear ‘normal,’ but act different. Just be more understanding.”

And here’s what I wish you knew about our autism:

His autism doesn’t make our lives awful.

It doesn’t make him weird or scary.

It isn’t a diagnosis damning him to a life of solitude.

It isn’t a statistic.

It isn’t a pandemic.

It isn’t something to be cured.

He isn’t waiting to be “unlocked.”

He is a little boy who is a million and one different things. And ONE of them happens to be autistic.

He has the capacity to learn and grow and change and make mistakes just like any other human being. He is not trapped inside his diagnosis. He will surpass your expectations. He will defy what you think you know about autism.

He will move mountains one day. You wait and see.

Meet Finn2

“Autistic People Should” not be pigeonholed

Much of what we do in life has to do with the confidence we have in our abilities. For some of us, we are born with a set of skills and a confidence about them. For others, our skills and our confidence must be nurtured and cultivated. Being told you cannot do something may be all the convincing you need to never try at all.

When I was in 8th grade, a very surly old nun told me I’d never get into the private Catholic school to which I was applying. I applied anyway and got in. I spent four years having fun and getting mostly Bs, but never really trying that hard. I went to a 4 year college and went on to get my Master’s degree in a competitive, writing intensive major. I graduated with a 4.0. It wasn’t until much later in my life that I realized I was actually smart. The quick (and thoughtless) assessment of one educator who only knew me “on paper” stuck with me my whole life. Her doubt in me germinated and became not only my self doubt, but also my internal drive.

I am tempted to seek out that nun and show her how her negativity didn’t break me, but motivated me to prove her wrong. But I suppose I would also be giving her some satisfaction or gratification that I’m not willing to relinquish.

I refuse to let anyone do that to my kids.

Assigning a set of “can” and “can’t dos” to autistic people, especially children who are so young and impressionable, can define the rest of their lives. Who are we to limit their potential? Autistic people have a capacity to learn and grow and change just like their neurotypical counterparts. Affixing a set of expectations and limitations onto a person simply because of their neurodiversity is prejudicial and dangerous.

I do not want my child placed inside a box. I do not want your expectations of him to be defined by his diagnosis. Get to know him. Learn about his challenges. Find a way to meet him in the middle. Because I guarantee, if you give him the opportunity to learn and a place in your heart, he will surpass your wildest expectations!

Ironically, we just finished reading the “Phantom Tollbooth” the other day, which both boys absolutely loved. In addition to being a quintessential childhood book, I loved the opportunity to teach Finn about the wordplay and double entendre in the book. At the end, when Milo completes the mission of bringing (the Princesses) Rhyme and Reason back to the Kingdom, he is given a hero’s reception:

“They’re cheering for you,” she said with a smile.
“But I could never have done it,” he objected, “without everyone else’s help.”
“That may be true,” said Reason gravely, “but you had the courage to try; and what you can do is often simply a matter of what you *will* do.”
“That’s why,” said Azaz, “there was one very important thing about your quest that we couldn’t discuss until you returned.
“I remember,” said Milo eagerly. “Tell me now.”
“It was impossible,” said the king, looking at the Mathemagician.
“Completely impossible,” said the Mathemagician, looking at the king.
“Do you mean—-” said the bug, who suddenly felt a bit faint.
“Yes, indeed,” they repeated together; “but if we’d told you then, you might not have gone—and, as you’ve discovered, so many things are possible just as long as you don’t know they’re impossible.”
And for the remainder of the ride Milo didn’t utter a sound.” 

― Norton JusterThe Phantom Tollbooth

If the difference between what you can do is simply a matter of what you will do, then I want to make sure my children will do anything they want!

This blog post was written in response to the flash blog movement entitled Autistic People Should. The blog was started in response to the atrocious things you can find by Googling “autistic people should.” One of the many horrible reverberations of the Newtown massacre. It is a drop in the bucket for the education and compassion of the world, but I am happy to join in.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

Margaret Mead

Braving the Arctic for the Polar Bear Run

The Polar Bear Run / Walk for Autism was today. I can’t tell you how humbling it was to have so many people gather to walk (or run) for “Team Finn.” We were extra cool and created bright yellow puffy painted shirts (see photo). People would walk by us and say “Go Team Finn!” One man even said, “Oh, there’s Finn! I remembered your team from registration!” Finn was wearing a shirt that said, “I’m Finn,” so there was no mistaking him!

Team Finn Part 1, including our runners and team founders Mary and Kelly and their families.

Team Finn Part 1, including our runners and team founders Mary and Kelly and their families.

Team Finn Part 2, including our "Angry Ducks."

Team Finn Part 2, including our “Angry Ducks.”

I, of course, was an emotional mess. I was so touched by the people with no direct connection to autism. People who don’t live it every day, but would endure sub-freezing temperatures to walk in the name of autism. Even more touched that our “team” would walk in support of Finn. In support of our family.

I was so honored.

Honored that past students of Joe’s (and one of our babysitters) Mary and Kelly thought on their own to start this team for Finn.

Honored that our family friends, even one with a newborn baby, would brave the cold; leaving the comfort of their warm homes, juggling their own personal schedules to walk for Finn.

Honored that the group, as a whole, gathered in support of a cause that is so near and dear to our family.

I felt at ease among the group at the walk. People were tripping over themselves to be kind to one another. Passersby offered to take pictures for us. Strangers said “hi” to Finn, fawned over the babies and complimented our shirts. It was nice to be around people who “got it.” People who were willing to offer encouragement to our son, but knew that if he didn’t reciprocate “appropriately,” that was ok, too. People who turned a blind eye to a tantrum or uneasy social exchange. People who didn’t need eye contact because they knew that love and personal connection aren’t always found in the eyes.

Daddy pinning the race number on Finn.

Daddy pinning the race number on Finn.

But somehow, Finn didn’t mind the spotlight. Except for that one picture where he turned his back (a typical occurrence in our house). He interacted with people when they talked to him. He played with the other kids while they ran around a pole to busy themselves while waiting for the walk to start. He literally led our team in the walk and even ran a few blocks with the other kids! There have been times when Finn couldn’t even walk two blocks on the boardwalk, let alone run without tripping! It was amazing! And yet another victory that is not lost on me!  

Today was a true testament to how far we have come. How much our family has changed in two short years. How big our hearts have grown. And just how full they can be through the kindness of others.

Thank you friends for supporting us and showing us, and Finn, what unconditional love is.

So proud in their "Team Finn" shirts. Charlie made his own. It says, "Team Finn. He rocks. I'm his bro!" Love that kid!

So proud in their “Team Finn” shirts. Charlie made his own. It says, “Team Finn. He rocks. I’m his bro!”
Love that kid!

Author’s Note: Thank you to the Monichetti family, owners of Mike’s Seafood in Sea Isle, who have two children with autism and have organized this event for the past 5 years. Our autism community may be small, but it is powerful! You can find more information at www.polarbearrunwalkforautism.com or follow them on Facebook @Polar Bear Run Walk for Autism.