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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A soft place to land or a hard place to live?

Home is really hard for Finn.

Those are six of the most heartbreaking and truthful words I have had to write.

Finn’s not like other kids. That goes without saying. And it’s not like he doesn’t like home or even find comfort from home, but home, for Finn, is like sitting in front of a high speed fan on a hot day. At first, it feels good and it’s comforting, but eventually it gets really annoying.

The part that’s really hard for me, besides all the chaos that Finn having a hard time at home brings, is the fact that Finn doesn’t have ANY trouble at school. He’s a completely different kid. He’s jovial and affable. He’s compliant and ingratiating. His teacher claims to almost never have to redirect him beyond what is age-appropriate for a 2nd grader. It blows my mind. Because, at home, I have to ask him no less than ten times to stop wrestling his brother and get dressed. And I can’t even tell you how many times (an hour) he gets in trouble for growling at the twins or just plain making them cry for no reason. He won’t share. He’s totally rigid and unrelenting.

Now, I know the me-of-3-years-ago would have given my left arm to have Finn where he is at school. He is a serious rock star. He has friends. He’s on grade level (or above) academically. It is picture perfect. For real. I’m not bragging. I’m, as Momastery would say, wearing my perspectacles. Only someone who has walked in my shoes can have the clarity, perspective and gratitude for these gifts as I see them. And I know they are gifts.

It’s just that I thought that as Finn got better at school, he would also get better at home, but that just isn’t the case. He’s like Dr. Jekyll and Mr. Hyde.

Some mornings he just wakes up on the wrong side of the bed. At 5:30. And screams.

And some days, despite having created a schedule for him and “steam rolling” him with the exercise ball, he still throws himself on the ground when we tell him his (scheduled) Wii time is over.

And I get that transitions (even scheduled ones) are hard, but he would NEVER do that at school. In fact, if a friend from the neighborhood walked in our house while he were throwing a fit on the floor, he would stop– immediately. I’ve seen it happen.

So where does that leave me? Being played? Almost positively, absolutely. But it doesn’t change the fact that my boy hates being home and he’s making it miserable for the rest of us.

I’ve tried everything– positive behavior supports (or as we seasoned parents call them “token reward systems”), schedules, social stories, at-home ABA therapy, pragmatic speech therapy, OT exercises, “if / then” statements, clearly stated rules and expectations, ignoring the negative behaviors, punishment… you name it, I’ve tried it.

I am at a loss for where to go from here.

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.

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. 

All I want for Christmas… is for my kid to not kick Santa

That quintessential picture on Santa’s lap. Whether the kids are smiling or crying, it’s always adorable. Parents get their kids all dolled up in their Christmas best. The kids make the finishing touches on their Christmas wish list. They head off to the mall for what will be the keepsake picture of the year. All the kids pile onto Santa’s lap. They say, “cheese,” get a candy cane and everybody’s happy.

That’s the way it happens, right?

I wouldn’t know.

Everything about going to see Santa is a nightmare in our house. We talk about it beforehand. I let the kids wear their jammies (so there’s no fight over the fancy clothes– and they look adorable!) Everyone’s excited about seeing Santa (including Finn). But, once we pull into the mall parking lot, it all goes to pot…

Have you ever tried to bathe a cat?

Because if you have, you will know what what it is like to try and get Finn to sit on Santa’s lap. He is all arms and legs, kicking and scratching, as he forces all his weight against me to try and escape.

Finn's first Christmas. Typical situation... Charlie is happy as can be. Finn is skeptical. But both cute as can be.

Finn’s first Christmas. Typical situation… Charlie is happy as can be. Finn is skeptical. But both cute as can be.

Things have gotten easier over the years, mostly because we’ve learned what he needs. Most of the early pictures involve lots of crying.

Poor Finny! He sat for me, but he didn't like it! If he could've jumped off he would!

Poor Finny! He sat for me, but he didn’t like it! If he could’ve jumped off he would!

Two years ago, my arm made a guest appearance in the picture. Finn refused to stay in the frame. Sweating bullets and searing with anger, I refused to let this one go. I held Finn in the picture while leaning out of the shot. Picture perfect, right?

Henry and Tallulah's first Christmas. Finn was ready to bolt! Oh yea, there's my arm!

Henry and Tallulah’s first Christmas. Finn was ready to bolt! Oh yea, there’s my arm!

Before Finn was diagnosed with autism and we discovered the world of sensory processing disorder, we just thought he was being difficult. We didn’t realize how truly stressful that experience was for him. The standing in line. The sitting on a stranger’s lap. The scratch of Santa’s beard. The flash of the camera. The people staring at him, trying to get him to look at the camera. It was all just too much for him.

Meanwhile, I was sweating bullets trying to get Finn to walk up to Santa and the picture lady is like, “What package do you want, Mom?”

Last year, we wised up (a little) and Joe stood in line while I took the kids into Gymboree. The kids watched the little Gymboree TV while I looked on the clearance rack for bargains for Tallulah. When Joe got close to the front, he texted me to come back. That worked a little better (but I was still a nervous wreck!) I don’t think the Gymboree people were too happy that we watched their TV for 15 minutes and then bolted, but they were really the unsung hero of our Santa picture last year.

What!? A smile? Sitting on Santa's lap? Holy Smokes! Thank you, Gymboree, for your TV and for keeping Finn from standing in line! You saved the day (and didn't even know it!)

What!? A smile? Sitting on Santa’s lap? Holy Smokes! Thank you, Gymboree, for your TV and for keeping Finn from standing in line! You saved the day (and didn’t even know it!)

But this year, I’m hoping our Santa visit is going to be a lot easier. I’ve heard of the Sensory Friendly Santa events all over the country. Friends of mine have sent me links to these kinds of events, but they are always too far for us to drive. I feel like I am always complaining about the lack of services we have in our neck of the woods. I wanted a Sensory Friendly Santa right here at our local mall; the Santa we always go to. So I decided to do something about it. I thought it would not only benefit my kid, but the many other kids (and parents) who struggle with this very same thing.

I started out by calling the corporate office of the picture company who does the Santa stand at the mall. I’m not sure if she understood what I was asking for, but she offered us a private event on a Monday or Tuesday when they are their slowest. I told her that simply wasn’t going to work. Many of our kids (including my own) have siblings who are in school. We just couldn’t make it work on a weekday. I so badly wanted this to work. I wanted to cry on the phone to this woman and say, “Don’t you understand how hard this type of thing is for us? We just want to go see Santa (the REAL mall Santa) just like everybody else. We don’t want to go to a cheesy, fake beard Santa just because they don’t have a long line and they will put up with my kid’s antics. WE WANT TO DO WHAT EVERYBODY ELSE DOES!” But, for once in my life, I bit my tongue, held in my tears and thanked the woman for trying to help.

But I didn’t feel satisfied. There had to be a way to get this done! So, I took to Facebook. I posted my problem on our FACES 4 Autism page and a Mom in our group read my post. She happened to be at the mall and she marched over to the Santa stand and talked to the manager. The manager said, “Of course we will do that for them!”

Later that day, I talked to the manager and she was like Mrs. Claus herself. She completely empathized with our situation and she said that they accommodate special needs kids all the time. She said that in the past they have asked the parents if it’s ok to ring the bell. (I could’ve cried right then!) She was like an angel. I could hardly believe it! I was going to save Christmas! Ok, so I wasn’t really saving Christmas. And it wasn’t all my doing, but just go with it…

We got a date on the books right then and there. They are going to open an hour early just for our families. We are going to have a craft table where the kids can make a free ornament while the parents wait in line for Santa. And she was open to any tips or suggestions I had to try and make the event as stress free as possible. I wrote a two page document with tips and suggestions for “Sensitive Santa” and his elves. (Click the link if you want to read them.)

Here's the flyer I made!

Here’s the flyer I made!

I am so happy and excited and humbled that this group of people is getting together to help our kids have a happy Christmas. But what is more important to me is the relief it will hopefully bring to their parents. Because I know the stress and the sweat and the tears that go into doing the smallest of tasks. Sometimes just getting in the car is a major catastrophe. So, if this eases some families’ stress this holiday season, then it will be the best present of all!

PS- I will be sure and post pictures after the event on Saturday.

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.