The truth about our Disney vacation

That is a keeper. Even if I did have to lie down on the pavement to get the shot!

You know those videos (mostly commercials) of the parents surprising their kids with a trip to Disney? You know the ones:

Parents (likely on Christmas morning): “Merry Christmas kids! Guess what Santa brought?”

Kids (all sleepy and cute in their Christmas jammies): “What?”

Parents: “We’re going to Disney World!!!!”

Kids: “OH! MY! GOOOODDDDDDDD!!!!!” And much jumping and hilarity ensue.

I hate those freaking videos. Continue reading

Five Minute Friday: Exhale

I’ve been holding my breath for 3 years. Ever since the word autism came in to my life.

On edge.

Tense.

Fearful.

Afraid of the next meltdown or situation I couldn’t control. Explanations are worth nothing. Rationale meaningless. Words come as little comfort. The meltdown isn’t about words. It’s about action. Change the situation. Leave. Run. The noise hurts. The crowd’s too big. The pants don’t fit right.

It wasn’t until dinner about three weeks ago that I finally exhaled. I sat teetered on the edge of my chair like a cat poised for action. Waiting for the next request or spilled cup of milk. I realized I never allowed myself to fully sit on my chair with my back against the backrest. The next request could be any minute, so why bother settling in?

But on that day, I allowed myself to sit. And enjoy my dinner. With my back against the chair.

Because the next meltdown or spilled cup of milk is going to happen whether I am comfortable in my chair or not.

So why not enjoy it while I can and exhale? 

Stop.

This post was written in response to Lisa-Jo Baker’s “Five Minute Friday” writing prompt: exhale. I had to write everything I could in five minutes. Please excuse typos, grammatical errors and general nonsense. I am a writer. I am never perfect.

It has to stop #NotOneMore

We were running late for the bus this morning. Permission slips were signed and lunches were packed. Then cereal was spilled and knees were scraped. I struggled to find four matching pairs of shoes and wriggle them onto four restless feet (thankfully, the big boys can put on their own shoes!) It was a typical morning, but we were running late nonetheless. We ambled down the street, as we do, and I heard the bus’ distinct rumble. The optimist in me said we’d make it, but as we rounded the corner I caught a glimpse of the orange blur and knew we were too late. I turned all of the kids around and said, “We missed it. Let’s go back and get the car.”

As we walked back, I tried to mentally reschedule my morning and figure out how I was going to get everything done—I hadn’t factored in a drop off to both boys’ schools. I was waiting for an important email that needed an answer right away. I didn’t have time to drive the kids to school.

I shuffled the kids into their car seats, started the engine for air conditioning and ran back inside to check my email one last time. I was sitting at the desk for about 30 seconds when Charlie came inside.

“Mom! Finn doesn’t listen!”

I was stressed and impatient. I barked back, “Charlie! I don’t want to hear it!”

He implored, “He didn’t want to play, so he just turned away… he said I was being mean and now he’s getting the babies to call me a bully…”

“CHARLIE! I SAID I DON’T WANT TO HEAR IT!”

He stormed off grumbling something under his breath.

I immediately felt guilty. Not just because I am always on a quest to stop yelling at them, but because it was a school day and who knew if this could be the day…

No matter how stressful our morning, I always make sure I kiss them goodbye and say “I love you.” I try to send them off to school on a positive note. Not because I’m Mary Poppins or because I think “happy kids do better on tests.” But because just before they get on the bus each day I think to myself, “What if this were the last time I see them?”

“What if the last conversation I had with them was one I’d rather take back?”

It may sound morbid, but any parent who has been alive since Columbine can’t help but wonder… Is this the day a crazy person might unload a magazine of bullets into a classroom of innocent children?

Yesterday, there was another school shooting. I watched the story on the Today Show this morning while the kids got ready for school. I did what I often do when there is disturbing news; I create a human shield in front of the TV while hovering near the speaker with the volume on 2. It was heart wrenching, yet oh so commonplace. This time it happened in Portland, Oregon and, according to NBC news,  it was the 74th school shooting in the U.S. since Sandy Hook. The shooting in Portland is the fourth school shooting in 18 days. Three weeks ago, after the shooting at University of California, Richard Martinez, father of slain student Christopher made an impassioned plea:

“Our family has a message for every parent out there: You don’t think it’ll happen to your child until it does. His death has left our family lost and broken. Why did Chris die? Chris died because of craven, irresponsible politicians and NRA. They talk about gun rights. What about Chris’s right to live? When will this insanity stop?”

I am both fearful and ashamed to live in this world. I shouldn’t have to worry at the bus stop if this may be my last moments with my child. Yet, it’s a thought that occurs to me every day. I should be worried about classroom bullies and getting picked for the kickball team at recess, not getting shot while they play in the schoolyard.

This isn’t about bigger walls or more security or having an armed policeman at the door. It’s not even about the mental health crisis in this country, although the lack of support for our country’s weakest and most vulnerable is reprehensible. It’s about the guns. High powered guns and mass amounts of ammunition are far too accessible in this country. Get rid of the guns. There is no excuse.

I am enraged by the gun lovers in this country who contend that “guns don’t kill people; people kill people.” Well, I’d take my chances with a crazy person and sling shot and a pile of rocks over a high-powered, semi automatic rifle.

Shouldn’t a child’s right to live supersede the right to bear arms? Obviously, our Congress doesn’t think so. Even in the light of Sandy Hook, we can’t seem to pass effective gun reform legislation and it is simply appalling.

Where have we gone wrong? 90% of Americans support stricter background checks, yet somehow Congress can’t seem to vote the way of its constituents. Even President Obama is throwing up his hands.

When will you take a stand? When it happens to someone you love? In your own backyard?

No matter where you stand on the issue of gun reform, can’t we all agree that NOT ONE MORE child deserves to die?

If you’d like to be a part of the movements to make gun reform a priority in Congress, please visit and support these websites:

Moms Demand Action “Much like Mothers Against Drunk Driving was created to change laws regarding drunk driving, Moms Demand Action for Gun Sense in America was created to build support for common-sense gun legislation. The nonpartisan grassroots movement of American mothers is demanding new and stronger solutions to lax gun laws and loopholes that jeopardize the safety of our children and families.”

Sandy Hook Promise “Sandy Hook Promise (SHP) is a national, non-profit organization led by community members and several parents and spouses who lost loved ones in the tragic mass shooting at Sandy Hook Elementary School on December 14, 2012 that claimed the lives of 20 first-graders and 6 educators. Our intent is to honor all victims of gun violence by turning our tragedy into a moment of transformation.”

Americans for Resposible Solutions (Gabby Giffords’ Political Action Committee) “With Americans for Responsible Solutions and likeminded friends engaging millions of people about ways to reduce gun violence and supporting lawmakers willing to take a stand for responsible policies, legislators will no longer have reason to fear the gun lobby and their dangerously deep pockets.”

Everytown.org #NotOneMore Richard Martinez’s postcard campaign powered by Everytown (a subsidiary of Moms Demand Action). Sign it and empower his voice: “Today, I’m going to ask every person I can find to send a postcard to every politician they can think of with three words on it: Not One More. People are looking for something to do. I’m asking people to stand up for something. Enough is enough.”

Don't they deserve to feel safe at school?

Don’t they deserve to feel safe at school?

 

10 things I learned when I gave up Facebook

In all the hustle of this modern parenting world, I did what my kids thought was impossible, and I gave up Facebook for Lent.

Pathetic as it was that my 8 and 6-year-olds thought I wasn’t strong enough to stay off Facebook for 46 days. I promised them I would.  To be honest, I was checking it up to 6 or 7 times a day… so my own addiction was scaring me.

My mind had been feeling really cluttered. At the end of the day, I would lie in bed and my heart would race and I couldn’t figure out why. I found myself thinking about things I saw on Facebook (sometimes about friends, sometimes about people I hardly knew) and I would worry.

I found myself yearning for the 80s– the time when I grew up. A simpler time. A less connected time. My mom didn’t have Facebook to distract her. She didn’t pin cupcake recipes on Pinterest. If she wanted to get away from us, she went into her bedroom or went to the bathroom and shut the door or “rested her eyes” on the couch. She read magazines. Real paper magazines. She picked wild blackberries with us. She didn’t have her face buried in a phone. She made phone calls with a corded phone and talked to real people on the other end.

I wanted my kids to remember me doing things with them, not seeing the top of my head as I post their accomplishments on Facebook.

So, here are the things I did when I spent 46 days off Facebook…

I judged myself less. Ok, it’s sad and embarrassing to admit, but I can’t help it. I, unwittingly, compare myself to other people. It’s human nature. I see friends posting pictures of their perfectly primped kids in their name-brand attire and think my kids are raggamuffins. They never match. Their faces are usually dirty and they are usually wearing hand-me-downs. So be it. Without the chance to see other people’s “perfect” kids, I didn’t feel so bad about my own (adorable) dirtballs.

And while I spent less time criticizing myself, I also spent less time thinking about how others were judging me. I was less aware of my own presence outside of my house. The only people’s judgement I needed to worry about were sitting at my kitchen table, and it felt nice.

I took less pictures of my kids. Without my phone constantly in hand, I didn’t have it at the ready to snap their pictures. Without the instinct to post their cute little mugs on Facebook and Instagram, I found myself just being with them instead of capturing what they do (and sharing it with my friends and family). I still took pictures of them, I just didn’t know what to do with them. They sat on my phone. I texted them to my husband. I made them my screen saver. I don’t think there is a whole in the internet where my kids’ pictures used to be.

I got my news from Brian Williams. Sure, I had to wait until 6:30 pm, but if it were newsworthy enough, Brian told me about it. It made me realize how much “news” is really just social media buzz. Brian Williams didn’t tell me what was #trending, he told me what was happening… in our world, not just in my news feed. It really broadened my perspective on the world. I used to feel like Facebook made me feel more connected to people, but instead it makes me feel more isolated and pigeon-holed. Facebook’s new algorithm chooses what and who it wants to show me and as a result, I feel like I am in a box. Staying off of Facebook forced me to seek out my news instead of hearing it 2nd hand (and from the same people). Besides, if something on Facebook were really important (like Grumpy cat turning 2), the Today Show would tell me about it.

Ugh.

I didn’t read more books. I just didn’t. I thought I would have more down time, but it turns out I never trolled Facebook as a singular activity. It was my distraction– my escape. I was never fully focused on Facebook. I did it as a multi-task (if you can call it that.) I justified doing it to take my mind off the mind-numbing thing I was doing (like watching the same Peppa Pig episode). I realized that Facebook only served to numb my mind more. I was never fully focused on either thing, Peppa or Facebook. Without the chance to check Facebook while watching Peppa Pig, I turned off the tv and made the kids play Candy Land instead.

I was less frustrated. I have been writing a lot  about yelling at my kids less. I found that when I wasn’t trying to do 2 things at once, I was less annoyed with my kids. If you haven’t read Orange Rhino, go check her out. She’s amazing. She’s not perfect (just like the rest of us), but she’s trying to yell at her kids less and she’s inspiring as hell. Thanks to her, I’m trying to pay more attention to what frustrates me, and being on Facebook while trying to parent 4 kids is definitely high on my frustration meter!

I had thoughts and I kept them to myself. Usually, when something funny happens, my first thought is to tell it on Facebook. I have an inner-monologue of self-deprecating Facebook posts in my head at any given time. During the first few weeks of my fast, things popped into my head and I itched to do something with them. I couldn’t believe that I had a thought I couldn’t share it with my 560 Facebook friends. After a few weeks, the itch went away. I didn’t feel the need to encapsulate a funny thought or life experience into a Facebook update. My experiences were mine and mine alone. I kept them to myself or occasionally shared them with my husband– if he could ever hear me over the chaos at the dinner table.

Charlie turned 9 and I didn’t publicly wish him a happy birthday on Facebook (which he isn’t on anyway, so it’s really kind of ridiculous). I didn’t lament over “where the time had gone” or tell everyone what a smart, wonderful, thoughtful little boy he is growing into. I had those thoughts. I just told them directly to him, instead of announcing them to the internet.

I thought about autism less. The day Finn was diagnosed with autism, Facebook stopped being fun for me. I started following a bunch of autism bloggers and advocacy discussion pages. Many of them have really helped me understand autism and how to advocate for Finn’s needs, but now 3 years later, I can’t stop reading the discussion pages and bloggers (even though I have a pretty good understanding of Finn’s autism). I see an article or discussion post and I can’t look away. What if it’s something I need to know? Well I just spent 40 days not knowing what the discussion boards were saying, and I think I’m ok. I think Finn’s ok. Instead of thinking I needed to do something “autism specific” (like more OT or horse riding therapy or melatonin for sleep or more organic foods), I just listened and responded to my kid. I focused less on his behavior being a by-product of his autism and more on it being a part of who he is. Every behavior does not need to be shaped and modified. He is a little boy. I’m sick of thinking about him in terms of IEP goals.

I didn’t take 1 selfie. Well, duh. What the heck would I do with a picture of myself? It seems rather redundant. Without the need to share what I am doing with the rest of the world, why would I need to take a picture of myself doing it?

I didn’t take 1 personality quiz. Perhaps it’s a sign of my age, but so many of the posts in my newsfeed were about people taking personality quizzes (“What Gilligan’s Island character are you?” or “What does your music collection say about you?”) I don’t really care. I don’t care if you are Ginger or the Professor. And I don’t really care if having a Biz Markie CD coupled with the Beatles’ White Album makes you an “eclectic dreamer with the propensity to bob your head.”

I felt less important. There’s nothing like a push notification on your iPhone to make you feel like you need to check it immediately. It’s a very inflated sense of importance. What if someone really needed me? What if it weren’t just a comment on a comment I made?

Lives could be hanging in the balance…

I was willing to take that chance.

If you needed me, you had to email me or actually, gasp, call (or text) me on the phone. Not many people did. And I’m ok with that. In this age of instant everything, I am OK with not being right at people’s fingertips. I took the Facebook app off my phone and iPad. Every few weeks, Facebook would send me an email and say, “wait, wait, you missed these posts from your friends…” But, in all, the “quiet” felt really nice. So nice, in fact, I have decided not to reload the apps on my phone and IPad. I am back on Facebook; although I haven’t posted anything. It feels weird to jump back in. So, I think I’m going to stick to checking it on the old-fashioned desktop computer. It’s less accessible that way. Just the way I like it.

On Easter Sunday, I announced that I had made it through Lent without going on Facebook, and Charlie said, “Oh, I forgot that Facebook existed.” I couldn’t think of a better reward for my fast! I think I’ll have to keep it that way.

I want my kids to learn that real friends are the ones you can see in person (at least every once in a while) and family is the most important of all.

Here’s to living a more real life…

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Our whole raggamuffin crew in our unmatching, uncoordinated Easter outfits. Would you expect anything less? By the way, I didn’t post this on Facebook.

 

 

Five Minute Friday: Writer… choosing real over perfect

I never called myself a writer.

I always just knew that I could write better than I could speak. My feelings were best expressed when I couldn’t see my recipient’s reaction.

A one-sided conversation of sorts.

I used to write in the backseat of our 1979 wood-paneled station wagon. I was the youngest of five kids. I never thought my opinion mattered… so I wrote it down instead.

When I met my husband, he brought the “writer” out in me. He is the best writer I know and he marveled at the hidden layer I rarely revealed to even my closest friends. It is his encouragement that brought about my blog. It is his voice I hear when I sit down and just tell myself, “write dammit!”

Writing is my best friend and my worst enemy. It brings out my worst self doubt, but also helps me release the Mommy guilt which would surely eat me alive.

My story isn’t neat. It doesn’t unfold in a linear pattern. My characters aren’t in my head, they are tugging on my pant leg right now as I type. This is real life. It’s raw and emotional. Things are often left undone. I hit “publish” and my heart is left on my sleeve every time.

I am evolving as a writer and a mother. Most days, I can’t separate the two.

My story will never be completely told.

The neat bow will never be tied.

And so I write…

This post was written in response to Lisa Jo Baker’s writing prompt “writer” for “Five Minute Friday.” I was supposed to write this blog post without worrying about perfection or typos or grammar. Perhaps you can tell. Perhaps my honesty supersedes my typos. You can check out Lisa Jo’s blog and all the other 5 minute Friday submissions here

Practice makes… less regret

I lay in bed last night with the boys just after finishing Harry Potter and the Order of the Phoenix. It took us 9 months, but we were finally done. Now we can watch the movie! The boys were thrilled. I lay with each of the them, snuggling and talking about their days. I giggled along as Charlie declared he would no longer call Chap-Stick by its given name, rather (in Doofenshmirtz’s voice) “the lip un-chap-inator.”

I felt light.

I felt jovial.

I realized it was because I hadn’t yelled at the boys in a few days.

Instead of lying with them, hoping to undo the day’s regret with a nighttime snuggle, I felt at peace. I didn’t have to apologize for my transgressions and hope that they would be resilient enough to forgive their fallible mom… yet again.

And it wasn’t like the past few days haven’t been wrought with temptations to yell.

Finn had an epic meltdown yesterday morning. It was one of those meltdowns where no matter what I did or said, he continued to spiral out of control. I offered a “Finny wash.” I offered a calm down space. I offered help. I tried rationalizing with him. (He was upset because he woke up an hour later than usual. He thought he would be late for school even though he still had an hour to get ready– um, yes, we normally wake up pretty early in the morning!) No matter what I did, he could not recover. He was “going to be late for school” and it was getting later by the minute. He was spewing offenses at me and throwing anything in his path. When I didn’t respond, he took to insulting Henry and Tallulah. Admittedly, I wasn’t exactly zen throughout the meltdown, but I didn’t completely lose my temper (or yell!) and that felt really good.

I know that the temptation to yell is lurking around every corner, but small successes like the past few days give me confidence and hope. Not to mention that “Orange Rhino” tweeted back at me and actually read last week’s post!

Thanks to everyone who reached out and commented on my post last week (despite my Lenten ban on Facebook!) Knowing I am not alone in my quest for parental peace gives me strength. As Momastery says, “we can do hard things.” Boy, can we ever!

My yelling’s smallest victims

My heart was so heavy as I tucked the boys into bed tonight. 

Charlie has been detached lately. I’ve tried to chalk it up to growing up, but I fear it’s something more.

He came home today in fits of uncontrollable sobs. He was worried about a project that’s due next week and he doesn’t think he’ll finish in time. I tried working through a solution with him, but I still couldn’t calm him down. He snapped at Henry and Tallulah, which isn’t like him. He lay on the couch still sobbing with the blanket pulled over his head. I curled up next to him and said, “What is it, baby? We will work it out together. You are not alone in this.” When he didn’t respond, I asked, “Are you sure there’s nothing else bothering you?” I always fear he is being bullied at school or having trouble with friends.

He said, “It’s home.”

I said, “What about home?”

Biting his lip, he said, “It’s just that you and Daddy are always so frustrated.”

I was horrified.

He was right.

I am so frustrated.

I am so embarrassed to admit it.

I could have a million excuses, but none of them justifies my crying child on the couch.

I swore I would do better when I vowed to stop yelling at my kids and I have failed in every possible way.

When Joe saw that I was going to try to stop yelling at them, he questioned why I would do that to myself. He said I was going to bottle up my frustration and drive myself crazy. He felt I was putting too much pressure on myself to be perfect. I didn’t see it that way. Perfection is never my goal. I just want to stop feeling guilty every time I put my head on the pillow at night.

I have tried. I started writing down my triggers (like Orange Rhino suggests). I’ve found that I yell when Finn hits one of his siblings and when everyone is crying at the same time (don’t laugh, it happens a lot!) I was working on it, but then I just gave up. I slipped back into old habits.

I can’t seem to get a handle on my anger. When the twins are crying and pulling each other’s hair and then Finn freaks out because he refuses to get a wrong answer on his homework, who could possibly keep a level head in that situation? Certainly not me. (Have I told you that I’m not perfect?) But I also have to concede that I am also the one causing some of that stress. My frustrated response escalates their frustration and sets a bad example. Do you know how many times I have yelled at them to stop yelling? Ugh. Worst of all, I fear that Charlie is the one who suffers the most. He suffers because he either forces himself to be a helper or he sacrifices his own needs to avoid burdening me with another request.

It has been said that autism parents have stress levels similar to that of combat soldiers. (I’ve always hated that analogy.) But, if that were true, what does it say about the stress levels of autism’s siblings?

Charlie has always had a light about him. He is a leader. He has a moral compass unlike that of many 8 year olds. We’ve always said he is an “old soul.” He always chooses right over easy, but lately I fear it’s becoming harder for him to choose happy over sad.

My little extrovert playing the role of "Hansel" in his theatre company's summer play.

My little extrovert playing the role of “Hansel” in his theatre company’s summer play.

He cries himself to sleep on Sunday nights. Some mornings, I can barely get him to get out of the car and onto the bus. He seems disinterested in his friends. I fear he is depressed and I don’t know what to do. What’s worse is that I fear he is depressed and there is something I can do.

I have to stop yelling at them. 

In my head, I am justified when the explosion comes out of my mouth. I’m pretty sure 9 out of 10 moms would do the same thing in my situation. But it still doesn’t make it right. I need to be the beacon in their storm, not the storm itself. This is not the mother I set out to be.

When Charlie was a newborn, Joe and I were walking him on the boardwalk in his stroller. We saw a Mom with a crying four year old. The child was hysterical; the mom clearly at her wit’s end. She yelled at the child, “Stop crying!” I recoiled. I couldn’t believe this mother could be so insensitive to her child who clearly needed her comfort. I remarked to Joe, “Let’s never tell Charlie to stop crying like that.”

Oh, karma, you are a cruel mistress.

Now here I sit wondering how many times I replaced anger with what should have been comfort– parenting from a place of frustration instead of compassion.

Well, once again, I say “no more!” I am recommitting myself to parenting with purpose. I don’t know that I will NEVER yell, but I have to try for Charlie– for all of them and for me.

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Nothing as it seems

I’ve been the recipient of the “you’re a bad parent” glare enough times to be impervious to it. Knowing that the look is inevitable is almost comforting. Call it a chip on my shoulder, but I prefer to call it a thick skin. I know that where ever we go, I am going to piss someone off. Or leave them misunderstanding our situation.

I once had a woman on a motorized scooter chase after me in Shop Rite to tell me what an awful job I was doing raising my children (at the time, I only had two.)

I’ve had people tell me that an “old fashioned smack on the butt would straighten (Finn) right out.”

That was before his autism diagnosis. Before I had a rebuttal that would shut down even the most ignorant person. It was a time when I was struggling so hard to figure out why. Why was it so hard to go grocery shopping? Why can’t he just sit with the other kids at story time?

Eventually, I just stopped going anywhere. It was too damn hard. Not just for me, but for Finn. And for Charlie. It was too disappointing to have to leave in the middle of something fun for Charlie, but excruciating for Finn. Onlookers would stare as I gathered up our belongings, scooped up the screaming two-year-old under my arm while the four year old straggled behind. A look of longing and disappointment on Charlie’s poor face, but ultimately knowing that it was beyond his control.

I recently went back to story time with the twins. It had, for so long, been off our radar, that I forgot that it was an option for us. Back in the day, we used to do well at story time… for the first 5 minutes… until they brought the instruments out and Finn would go nuts. I couldn’t figure it out. But now, the twins do everything. They play instruments. They sing the songs. They sit next to other kids during the puppet show. Tallulah marvels at other little girl’s “sparkly shoes.” It’s amazing. It’s effortless. And yet it’s bittersweet.

I sat back and watched Henry and Tallulah in awe. I even got to have a conversation with another mom while the twins played with her daughter. It was every bit a “normal mom” moment and yet autism is always on my mind.

You see, there was another mom there and I knew her. Well, I didn’t know her, but I’m pretty sure she was me four years ago. I knew the look on her face. Frustration. Fear. Confusion. Her boy would run from her arms for a moment or two, perhaps to grab an instrument or sit on the rug, but he never stayed long. He was all over the place. She kept trying to wrangle him back to the group, but he didn’t want anything to do with it. All the kids were watching the puppet show and he was trying to climb behind the curtained stage. All the kids were singing “Open shut them” and he was crawling under the tables and chairs.

Any “normal mom” would look at this mom and say “what the heck is wrong with your kid?” But not me. What I saw was a little boy in a lot of pain. He was dysregulated. He was in panic mode. He didn’t know how to calm himself down and his mom looked at the end of her rope. I know that feeling. It’s taken me years to recognize it in myself and in Finn.

I wanted to give that mom the “I know” look, but I’m not sure I pulled it off. The poor woman was sweating from head to toe. I’m certain all she saw were disapproving eyes. I had no idea if her child had a diagnosis. I certainly didn’t want to say anything to her, but I wished I could’ve eased her pain.

I recently got an email from an old college friend. She told me about a recent visit to a Children’s Museum where she and a group of Mom friends were gathered with their toddlers. Another Mom was there with her seemingly “out of control” child. It was only a matter of time before this poor Mom would frantically gather her tantruming-ear-covering child’s things and skulk off to avoid a scene. My college friend said the other moms exchanged disapproving looks, but she said that because of my blog she knew better. I was so happy and humbled that I opened her mind to see more than just a tantruming child. She saw more than just a frustrated Mom. Perhaps that boy didn’t have autism. Perhaps that Mom is not on the same path as me, but my friend empathized with her pain and she certainly didn’t join in on the “bad parent” glares. She realized that perhaps things aren’t always what they seem.

Can you see a disability here?

Can you see a disability here?

Even “normal moms” have to skulk off with their tantruming child every once in a while. Sure, it’s far less often than some of us, but the innocent onlooker doesn’t know how many times (today) I’ve had to drop everything and run out the door.  And sometimes seeing another mom who says “I know” or “I don’t know, but it’s not YOUR fault” or “wanna have coffee someday” can be a lifeline like you wouldn’t understand.

Because we are all just trying to row our boats and stay afloat. Some of us seem to do it better than others. Some of us are constantly bailing water out of our boats. Some of us dropped a paddle and are set adrift. And some of us, despite our boat’s perfectly cleanly appearance, feel like we are clinging to a dingy. But the truth is that most of us have been in every one of those boats at one point or another and  there’s comfort and strength to be found in another person who realizes that nothing’s as it seems.

“Oh you are not a kid with autism”

Finn spends quite a bit of time drawing in the playroom. I don’t always see what he draws because he crumples it up and throws it away. He didn’t “draw it right” or “one of the babies messed it up.” But on this particular day I noticed what he drew because he drew this:

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He drew the logo for “FACES 4 Autism,” which is our local autism support group, and he wrote, “Oh you are not a kid with autism.”

When I read “Oh you are not a kid with autism” my heart sank. Does he think he doesn’t have autism? What could he possibly think about autism to also think that he doesn’t have it? Any conversation I have ever had with him about autism was always positive… His autism is what makes him good at math. His autism is what makes him really organized. His autism is why he loves lighthouses so much.

I was baffled and heartbroken, so I asked him what he meant. He said, “I was writing it to Courtney” (his cousin). I said, “You were telling her that she doesn’t have autism?” He said, “Yea. She’s lucky.” I said, “Why baby? Autism makes you so special. Why do you think someone who doesn’t have it is lucky?” He said, “Because we always have to go to walks and parties with your friends at Faces.” (A little background– we did the Polar Bear Run / Walk for Autism in subzero weather last year. I thought the kids were going to be Popsicles when we were done!) I laughed and said, “Honey, those things are things that we do to get out and help other people. They have nothing to do with your autism. We don’t have to do those things if you don’t want to.” He said, “Fine.”

And we left it at that.

Until today.

If you read my post last night, you know that today is Henry and Tallulah’s birthday. Finn and I were talking about the day he and Charlie and the twins were born. I always tell Finn about how he didn’t open his eyes for the first three days of his life. And it’s the truth. He didn’t. I remember asking the pediatrician if he could see and how would we know because he didn’t open his eyes.

Finn joked, “I didn’t open my eyes, huh Mommy?” I said, “Nope, baby, you weren’t ready to see the world yet.” He said, “It was just too bright.” I said, “Yup.” He said, “That’s one of my things: too bright and too loud.” Astonished at his awareness of this, I eloquently said, “Yup.” He said, “I’m just sensitive.” Again, a master of words: “Yup.” He said, “I don’t want to be sensitive and I know it’s because of my autism.”

How does he know that? I’ve never told him anything about that, but more importantly, why is it bugging him so bad lately?

I sat on my bed stunned and searching for an answer that would bide my time. This autism thing is unraveling like a sweater and I don’t know how to stop it.

I know plenty of parents who don’t tell their kids they have autism. I’ve always felt it is a parent’s perogative to tell or not. Joe and I have always felt that telling Finn was the right thing to do for our family. We didn’t want him to grow up feeling different and not knowing why. We didn’t want the word to feel taboo. We didn’t want him to feel like we were keeping a secret from him. We are proud of who he is and we didn’t want him to think that there was any part of him he should feel ashamed of.

But now, here he is at 6 years old feeling ashamed anyway. Here he is in a mainstream classroom, barely requiring any modifications or sensory breaks and he is resenting this label he doesn’t even understand. I have always felt that keeping the autism dialogue open would help Finn in the long run, but is there a chance that I started it too early?

When Finn was first diagnosed, things were really hard. We didn’t know why Finn did the things he did. He seemed to intentionally want to break things or torture his older brother and then got pleasure out of it. Time Out did nothing. He was really aggressive and the twins were newborns; we were worried that he would hurt them. It seemed quite apparent to us that our child was different. He couldn’t stay in a room of more than 5 kids without hitting or biting someone. He walked on his toes. He wore headphones in loud places. He used “Perry the Platypus” as his alter-ego when he was in uncomfortable situations. Telling Finn about his autism seemed like a no-brainer. Perhaps he wouldn’t feel so different if we told him that he was a little bit different, but that we are all different and that’s ok.

But Finn is different in another way and he knows it. He knows that Charlie doesn’t have a team of behavior people who come to our house and discuss the latest goings-on. He knows that Charlie doesn’t need a token board to reward his good behavior. He knows that Henry and Tallulah don’t “earn” Ipad time. And he knows that no one else needs a “steam roll” with an exercise ball to calm down.

Earlier tonight, Tallulah ran crying into the office and said, “Henry pulled my hair.” I did what any lazy Mom would do and yelled into the living room, “Henry! Go in time out!” One minute later, I heard heavier footsteps than I should have and a heavy sigh as Finn resumed his well-worn spot in time out. I said, “Finn, you didn’t do anything wrong. Why are you in time out?” He said, “I heard you say time out and I thought you were talking to me.”

That was not a good feeling.

Finn knows he’s treated differently no matter how hard I try. He gets in trouble more than the other kids and he is praised more than the other kids. There’s nothing I can do about it. It’s not as if I can take all our supports away just because Finn is aware that they are there. We would be set adrift. He would regress, and I surely would lose my mind. I keep reminding myself how far we’ve come since those early days of biting and Perry the Platypus. I keep reminding myself that Finn being aware of his differences is a good thing and that some parents would kill just to have such a self-aware conversation with their child. I keep reminding myself that in the spectrum of our spectrum’s problems, ours aren’t so bad.

I only wish I could convince Finn.

To Henry and Tallulah on your 3rd birthday

I sit here on the eve of your third birthday and marvel at the human beings you are becoming. With each milestone comes new challenges, but new triumphs as well. I love those moments in the wee hours of the morning, the ones when it is too early for me to come get you, but too late for you to go back to sleep. I hear the two of you talking to each other and it is the sweetest start to my day. Henry, you usually pretend to be “Honey” while Tallulah pretends to be “Mommy” and you pretend to need things and care for each other. The dialogue usually ends with Henry calling Tallulah “too sassy” and then the silence of the morning is broken.

We bound down the stairs, all five of us, and start our day with a snuggle on the couch. Tallulah, you and Henry usually sit right on top of me in “Mommy’s ‘nuggle’ spot.” I can barely see over you to glimpse at the Today Show or Barney or Sophia the First, whichever show won the favor that morning. I sit, smothered by tiny almost-three-year-old hineys and soak in your stinky morning smells. They are the last vestiges of babyhood and I am savoring them.

All too soon, we will be dismantling your cribs, irrevocably transitioning into “big girl” and “big boy” beds. And for the first time in 9 years, we will soon have no children in diapers. And I’m sorry. I’m sorry that Mommy will have a hard time accepting all of these (glorious) milestones because they mark the end of your babyhood. I’m sorry that Mommy tears up when, instead of crying and running to me when you fall, you dust yourself off and say, “I’m ok, Mom” (that would be Tallulah, NOT Henry!) I’m sorry if I do that weird long hug once in a while as I soak in your delicious little baby smells for a few moments longer. I’m sorry if I linger outside your pre-school door next year. I may even climb over a bush to peak in the window or seem to have misplaced my keys just to be sure you didn’t forget your snack… or you need another hug.

But I know you won’t.

You see, you have done a bang-up job of growing. It’s your Mommy who can’t catch up. Watching the two of you grow into conscientious, caring, talkative, boisterous little people has been one of the greatest joys of my life. But it is going by at the speed of light.

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Thank you for getting it and knowing when to stay out of Finny’s way. Thank you for cleaning up Finny’s toys before he gets home, so he doesn’t know you played with them. Thank you for moving from the seat you want to sit in (even though it’s Finny’s)… somehow you just understand even when he doesn’t. You ask before you touch Finny’s towers because you know that “Finny’s gonna get so mad!”

There is so much empathy wrapped in those tiny little bodies.

Yet so much mischief, too.

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Henry, you are like the Mary Tyler Moore of kids– you can turn the world on with your smile. Kid, there is nothing stopping you! I still can’t believe that Cerebral Palsy is a thing of the past for you. You finished with your final therapy in August. What was once 3 therapies a week is now none. I could sit for hours and marvel at the wonder of you. You will move mountains one day, of that I am quite certain.

Tallulah, you were a born leader. I knew from the first time I held you that you were going to teach me about strength. You have a zest (some may call it sass) and a confidence about you that I hope never goes away. You are going to set the world on fire, I just know it.

So, forgive me if I have a teary smile while we blow out your candles on Sunday. I’m just so darn proud of my babies.