Author’s Note: This was originally posted to my old blog on September 3, 2011, three months after Finn’s diagnosis. It took me that long to really digest the diagnosis. Autism Speaks gives you the “100 days kit.” It took me roughly 90. (I’d like to think I’m highly evolved.) This was our “coming out” blog post. I am re-posting it to my new blog in the interest of creating our “back story.” If you haven’t already read it, please do. I welcome your comments!
I’ve been writing this blog post for months in my mind. I have an ever-constant inner dialog playing, it’s a mix of explanation and rationalization… trying to wrap my brain around it and trying to figure out how to tell other people. But whether we can dispute it or not, we’ve decided to come clean with a little secret we’ve been keeping. On June 14, we were thrown our biggest parenting curve ball to date… Finn has autism.
I say this because I don’t want you to pity us or him. Ever since his diagnosis, emotions have run the gamut from anger, disappointment, sadness, grief, disbelief, relief, gratitude and now acceptance. We are very lucky. Our child doesn’t have cancer. He isn’t physically disabled. He doesn’t know any different, and now we can get him the help he needs to make his life a little easier. Finn’s autism is what they call “highly functioning.” If full-blown autism is like swimming in a pool, then Finn is just wading around the shallow end! You could look at Finn, and even interact with him and never think he “acted autistic” (something people have said to me!) But on the days, even moments, that Finn is struggling you can tell and it’s like a tsunami!
As I would imagine is the same for anyone who receives a diagnosis, you feel like little birdies are chirping around you as you slowly float away from your body and watch yourself below nodding along with whatever the doctor is saying. At least that’s how it happened for me. I thought getting Finn tested was just a formality. I had checked Autism Speaks, I “knew” the signs of autism. (Hell, I saw Rainman. No matchstick counting here, thank you very much.) “Autistic kids don’t hug you. Autistic kids don’t look you in the eye. Autistic kids spend hours watching spinning tops.” Well, Finn doesn’t do any of those things, and Finn, we now believe has autism. He does throw a tantrum if you knock his Legos down. He does punch his brother (or anyone) in the face if he is in a loud situation or is feeling out of control.
Believe me, I’ve spent the last 90 days trying to debunk this “crazy lady’s” diagnosis. And, to me, she was a crazy lady! In addition to saying my kid had autism, she was wearing socks with thong sandals! I mean, who does that? Clearly an activity reserved for the severely crazy! I’ve read as much as I could get my hands on. We’ve attended autism support group meetings. We’ve been to behavioral counseling, occupational therapy, physical therapy, and child study team meetings. At the end of the day, all I was looking for was another kid who looked and acted like Finny. A child who could make this all right in my mind. What I found is that autism looks different on every kid. It’s a wolf in sheep’s clothing and some days it’s a sheep in wolf’s (itchy) clothing! And some days it’s a platypus… why, because Finn says he’s going to be a platypus, and we don’t want to argue! No two autistic kids have the same symptoms… well, I guess except the tantrums. That seems to be pretty universal! I told Joe that 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!”
We were hesitant to tell people because we felt like “what if the crazy lady was wrong?” Ever since the diagnosis, I’ve said this is either going to be the chapter in my autobiography entitled “The Day Our World Tilted on Its Axis” or “The 5 Minutes When Finn Was Autistic.” But the more Finn shows us, the more we feel like it’s the former. And while Finn’s symptoms and reactions to them may improve, he will always struggle in some way with this. And this is far too big to go through alone!
Let me back up a little. Contrary to what so many people say “I always knew something wasn’t right” or “The day after his 3rd birthday everything changed,” I did not see this coming! Finn has always been… shall we say intense? When he was a newborn, I would say “If he’s awake, he’s crying!” But after 8 weeks of solid crying, I eliminated soy and dairy from my diet and he was a dream! He was so calm and sweet. He used to reach up and stroke my face while I rocked him to sleep. When he turned a year, the doctor asked if he was pulling himself to stand and I said, “No, he’s not even crawling.” And off to the neurologist we went! The neurologist said he was fine, so we had him in Early Intervention for a few months until he walked. He was diagnosed with low tone and consequently walked on his toes, or so I thought! Once he walked, all he wanted to do was run and he was released from EI.
As he got older, one thing he did particularly well was play by himself, which I took as a Godsend because after Charlie’s nonstop chatter and need for interaction, I was happy to have an autonomous child! I don’t remember at what point he got out of control. I suppose it was around 2, just like every other kid! I felt like he had some issues with noise, but lots of kids do! He was having meltdowns that lasted 45 minutes. He was aggressive and out of control when he had to transition to something he didn’t want to do. Sounds like a typical 2 year old, right? I mentioned my concerns to our pediatrician at his 3rd birthday and she said all my concerns were “normal” and to try some different forms of time out and a sticker chart.
Great. A sticker chart. Has this lady seen my kid? He laughs in the face of sticker charts. I think his head has actually spun completely around. But only once.
Two months later, I made an appointment with a developmental pediatrician. I felt like it was fine if there’s nothing going on, but parenting Finn this way felt like trying to fit a square peg into a round hole! Something was clearly bugging him, and I couldn’t help him. I was literally helpless, both mentally and physically, because I was pregnant with the twins! We had to wait 6 months to get the appointment with the developmental pediatrician. All the while, dealing with meltdowns and Finn’s physical violence every day. We were clearly floundering. As my belly grew bigger, I couldn’t restrain him anymore so we just never left the house. One time, I thought I was doing a good thing and I brought him to a gym to play (something I would never do now, it’s way too noisy and over stimulating for him). I was 32 weeks pregnant, and after enduring a few meltdowns at the gym, I decided it was time to take this tantrum on the road. A midst his irrational tantrum, he ran away from me in the parking lot, and in my haste to chase him I slipped on ice and fell. Luckily the babies were ok, but I left there mad at myself for not parenting him better and putting him and the babies in danger.
Another very telling moment, in retrospect, was when we were putting Finn into a “big boy bed” in preparation for the twins’ birth. I was cleaning Charlie and Finn’s room while we moved the bed in. As I was cleaning, I moved his CD player (which he calls his “ni-nights”). I told him I’d put it right back when I was done cleaning, and went about my business. I was wrestling with the book shelf, but Finn just started wailing “Put my ni-nights back! Put my ni-nights back! eh eh eh eh!” I couldn’t understand why he couldn’t understand that I would put it back IN A MINUTE! And at that point he had pushed all of my buttons! At my wit’s end, I went into Joe and said “I SWEAR TO GOD THIS F#@$%NG KID HAS ASPERGER’S!” Joe, in a particularly outstanding parenting moment, said, “Shan, if he has Asperger’s, do you know how upsetting this is to him?” And he tagged in and took over the move in a way that wouldn’t upset Finn. That moment scared me. Little did I know what was to come!
A big part of what bugs Finn so much stems from something called Sensory Processing Disorder (most autistic kids have it, but not all kids with SPD have Autism). It’s a neurological condition that scrambles Finn’s sensory input. If too many noises are going on at one time, for Finn it’s like standing in front of the main speakers at a Pearl Jam concert. He can’t filter any of it out, his brain goes haywire and he has a meltdown. In addition to the noise, he also has a problem with his sense of “proprioception,” which is his ability to “know where he is in space.” Kids who have problems with this fall down… a lot. After he was diagnosed, we started noticing that when he walks down the hallway he always drags his hand along the wall or stays to one side. That’s because the hallway is too wide open a space for him and it freaks him out. No wonder he clutches to me when we walk down the boardwalk! Kids with proprioception dysfunction also have trouble grasping things or knowing how hard or soft to hold or push something. They could hold a Dixie cup and one day crush it and another day drop it (which we’ve seen him do!) His physical therapist says that just walking makes Finn feel like things are coming at him. Could you imagine? It’s like being in a fun house all the time, only it’s not so fun. Which explains why he’s always walking on his toes. He does it when he’s nervous or feeling unsure… so, all the time!
So, like I said, we’ve spent the entire summer taking him to evaluations and behavior counseling and trying to figure all this out. A big moment for me was while we were at Knoebels in Pennsylvania. Charlie wanted to ride everything he could get his hands on. Finn was happy to touch the “North Pole” (a pole of frozen germs, I mean water, in front of Santa’s house), ride the antique cars (I think at last count he rode them 6 times) and touch the toy train. He was visibly nervous the entire time we were there. At one point, I was coming out of the bathroom and I spotted Joe walking with him across the way. Finn was walking on his toes and practically sideways like a crab. He had is head cocked to one side and looked like he was in pain. I can only imagine how stressful that day was for him. After that day, I realized we needed to start to see the world through Finny’s eyes instead of forcing him to see it through ours.
He truly can’t help it. His brain is literally in overload and he craves order to try and ease the confusion. He plays with Legos and trains because they appeal to his sense of order. That’s also why when he’s making a “line-up” with his trains or building “the highest All-Star Movies Hotel” and someone messes it up, it’s a major tantrum. Sometimes Finn expects things to happen a certain way, like always getting a muffin after we go to the library or always pushing the handicap button at the mall. He counts on those things to happen because he needs the predictability. When it doesn’t happen, he melts down. And while his show-stopping tantrums are really easy to look at and say, “He’s too old for that” or “He just needs more punishment,” neither of those will help him or change his behaviors. And it’s really easy to look at us and say “They give in to him too easily.” But, it takes all our resolve to be patient and know that “giving in” on a small scale really doesn’t make a difference in the grand scheme if it helps him out of the terror he is in.
Picture having the flu. You’re hot and cold all at the same time. You fall over while getting one leg and then the other into your pajamas. You muster up all your will to go downstairs and get some orange juice and you spill it all over yourself while trying to pour it. And then while trying to clean it, you slip and fall in it. You look up at the sky and say, “REALLY God? Really?” On any given day, one of those things might be frustrating, but all at the same time is just too much! Well, I think that’s how Finn feels every day. So if we can ease the amount of times he has to say “Really God?” then we consider that a win!
We are still learning every day, both about autism and Finn. I suppose it’ll be years before we figure it all out. But we wanted to let you know because they say it takes a village, and a village is exactly what we need.
If you want to read more about it, autismspeaks.org has a lot of amazing resources, but it’s also really overwhelming! I put a link here for a quick little thing called “10 things your autistic child wishes you knew.” I think this helps put it in a way that’s not so confusing or scary!
I wish there were some list of “ways to deal with Finn” that I could give to make your interactions with him better. All I can say is please just be patient with him, and with us. And try not to cast judgment. Know that we are doing the best we can to help everyone’s lives as happy as possible!
The road ahead is not going to be easy, but like the Beatles we hope to “get by with a little help from our friends!”
On a side note… as expected, Charlie is just the best big brother ever. He accommodates Finn whenever possible in the interest of avoiding a meltdown. He is the best helper and just so understanding! While we were on vacation, I said to him, “What did the teachers tell you about autism?” (They had an autism awareness week at school). He said, “Kids with autism like to do the same things over and over. It’s this thing in your brain that tells you to do something and if you can’t do it you like freak out.” I said, “Does that sound a little like Finn?” He said “Yup.” I said “Do you think Finn has autism?” He said “Yup.” And that was all he had to say about that! Since then, when Finn does some unusual things, Charlie says “Oh that’s cause of his you-know-what, right?” It’s a lot for a 6 year old to understand, but we feel like it’s important for him to understand why there are sometimes a different set of rules for Finn. We also don’t want to make the autism taboo. It’s only a percentage of the person Finn is and we hope you will see him that way, too! We haven’t told Finn he has autism. We will deal with that when he’s a little older. Right now, we’re just working on pre-school!
And as for that chapter in my autobiography, I’ve decided it will be neither. Instead, I think I’ll call it “The day I learned to take everything one day at a time” because that’s exactly what we’re doing!