The truth about our Disney vacation

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

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“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. 

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.

My parenting legacy: my quest to stop yelling at my kids

When I was a kid, my mom used to make “baked apples.” It was a cored apple with brown sugar, cinnamon and raisins. Although it was a “healthy treat,” it tasted like heaven. But even better than the taste was the smell. Suzanne and I would bound off the bus, see my Mom’s car in the driveway and run into the house. Midway from the bus, we could smell the baked apples wafting out of the kitchen window and it just smelled like home.

She probably didn’t make the baked apples all that often, but the memory and the smell stuck with me.

Both my parents worked when we were kids. Suzanne and I would dread the days when we were “latchkey” kids because it meant we would be home alone until dinnertime. I usually watched Duck Tales and Oprah (like all 8 year olds do) while Suzanne checked every door and window for signs of burglars. Tuesdays and Wednesdays were my Mom’s days off and they were the best days of the week. School was always more tolerable on days that my mom was going to be there after school. Baked apples or not, Mom meant “home.”

It’s that feeling that has always driven my own parenting aspirations. I wanted my presence to feel like a safe haven for my kids. A place of respite from the pressure of the world. A soft place to land.

Only I haven’t been feeling like that kind of Mom lately.

I’ve felt stressed and overwhelmed and frustrated. Easy to snap at the kids and roll my eyes at them for doing things that aren’t their fault (like spilling their milk for the umpteenth time), not because I blame them for the mistake, but because it creates more work for me. And the list is already so long.

Except the kids don’t know how long my list is. Nor should they. They are busy being kids. I don’t work outside of the house. My job is creating a home for these four souls. I shouldn’t care that I’ve cleaned the same spilled glass of milk every single day for the past eight years like it’s groundhog day. It’s my job to be gentle with their tender little hearts no matter how much milk is spilled.

Some days, when I’m trying to talk myself out of my frustration, I remind myself that ten years from now none of this will matter. I won’t even remember all the little things that swirled around my head each night before bed. Long gone will be my worries about the bills, and Finn’s struggles at school, and Charlie’s worries “about the unknown,” and when Henry will stop drooling, and Tallulah’s superhuman insensitivity to pain.

The decisions will have been made. Our story will be told.

Long after the stress of this young motherhood life is gone, I often wonder what part of my own legacy will be left? What will be my “baked apples?” Will the kids remember how I (try to) read them Harry Potter every night? Will they remember the affirmations I whisper in their ears before bed? I know they know I love them, but do they feel it? Or do they see a crazy, stressed-out banshee lady?

When we were kids, Suzanne and I were friends with a family who, like us, had 5 kids. Their kids were much younger than the 5 of us and things definitely got chaotic in their house. The mom was always exasperated and yelling at everyone. We would visit their house and the mom always seemed on the brink of a breakdown. I was 8 and I realized it. I’m sure she had a lot on her list, too, but we were kids; we just thought she yelled a lot. I never wanted to be like her.

The stress of parenthood and parenting a special needs child is just something that is interwoven into my life. It can be a thread in the pattern, but I can’t let it ruin the whole design. The stress is always going to be there. Despite my best efforts, my floors will always be dirty. The TV will always be too loud. The twins will always find a reason to pull each other’s hair. Charlie and Finn will always wrestle too hard. And milk will always get spilled.

One day, the stress will be gone, but so will the twins’ chubby knees. And the funny way that Tallulah says “Goldfosh.” And Henry’s incessant insistence that we “go to ‘Mickey Place’ with Daddy.” And Finn’s fascination with lighthouses. And Charlie’s relentless enthusiasm and budding liberalism.

The chaos is not going away any time soon. I have to find joy in the chaos. I have to parent meaningfully through the chaos.

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Those four hearts are far too important to take chances.

I will do better. Starting today. I’m taking the “Orange Rhino Challenge” to not yell at my kids for 365 days. Behaviorists and autism experts are always saying that as your child starts to lose control, you should remain calm so that they can model your behavior and their behavior doesn’t escalate. I know this. But putting it into practice when everyone in the house is melting down is another story. But that all ends today. I’m jumping in with both feet. It seems really daunting, but they deserve a little peace and, frankly, so do I.

Finn must have sensed I needed this.

Finn must have sensed I needed this.

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He made both of these this morning.

Inspiration for this post:

“Learning to hold a yell”  by Orange Rhino

“10 things I learned when I stopped yelling at my kids” by Orange Rhino

“12 steps to stop yelling at your kids” by Orange Rhino

“The perfect storm” by Lisa Jo Baker

“How mothers are made” by Lisa Jo Baker

Rainy days and Mondays

Sitting at the kitchen table. Trying to avert Finn’s meltdown. I had been shuffling Charlie, Henry and Tallulah from room to room so they would not bear the brunt of Finn’s rage. Removing ourselves from Finn’s line of vision was only escalating his meltdown, so we settled in at the kitchen table for breakfast.

I was trying not to respond.

I was trying not to pour gasoline on the fire.

So, Charlie, the twins and I tried to carry on with our morning amidst Finn’s screaming.

I sat down next to Charlie and saw his lip start to quiver. I thought, “This is it. He’s going to tell me he wants out of this family.”

Charlie.

My rock.

My beacon in the storm.

The one who will help at a moment’s notice. The only eight year old I know who has the empathy of a full-grown adult. My sweet boy who, just last night, was sitting in bed tormented over global warming and what we can do to change the future of our world, was sobbing into his bowl of Cracklin’ Oat Bran.

I put my arm around him and said, “I’m sorry, I can’t make this better for you, baby.”

He said, “It’s not Finn. I miss Daddy.”

I said, “I know, baby, I do, too, but he has to work.”

Even amidst his own hysteria, he tried to talk himself down by saying, “It’s always so hard when we get to see him all weekend and then the week comes and I just miss him so much.”

I was heartbroken. And I knew Joe would be, too. It’s not that Joe chooses to work as much as he does. We don’t have a choice. He works and I stay home with the kids. A two income family is not an option at this point in our lives. But, how do I explain that to Charlie? Whenever I try, it usually ends in Charlie running upstairs and retrieving his piggy bank as an offering for Daddy to come home.

I felt powerless.

And frustrated.

And as if Charlie’s needs weren’t palpable enough, there was Finn still melting down in the living room. I knew he needed me, too, but I didn’t know how to help him either.

I saw it coming when he walked down the stairs and asked for the “magic towel” (those stupid washcloths that grow when you put them in water.) He and Henry were arguing over it yesterday and I let Henry put it in the bath last night. When Finn woke up this morning, it was the first thing he wanted and he wouldn’t accept that it was not its magic shape anymore.

He kept asking me where it was and insisting I search for it with him. I told him it was in the bath, but he kept asking. I decided to try and tend to the other kids while Finn continued asking me where it was. I found Finn’s sensory brush in the toy box and asked him if he wanted to be brushed, but he said no.

I knew things were about to get ugly.

And then the wheels completely came off.

I asked him to get dressed so we could eat breakfast and that did it.

It was a half hour before Finn calmed down, but the rest of us were left rattled in his wake.

Charlie was in tears for the remainder of the morning. Even before he got on the bus, he was begging me not to go to school.

I promised him a surprise for surviving his day. Only I have no idea what that is going to be.

I have been reeling all morning. As I usually do after one of Finn’s meltdowns. What could I have done to help him? The million and one things I could’ve done better. I wish it didn’t get to me when he when yelled that he hated us. I wish I could put on headphones, too.

Despite my mood, I still willed myself to go to the gym. Tears streaming down my face as I walked in. I felt like a basket case. A basket case who needed to run away from her problems, physically and mentally.

I wish I knew how to make it better.

For everyone.

Damn rainy days and Mondays.

Putting myself on the list

“And how are YOU doing? Are you finding time for yourself?”

She was completely well meaning, but I wanted to laugh in her face. Actually, I think I did. Finding time for myself? How could I possibly? I had infant twins, a 6 year old and a newly diagnosed 3 year old whom I hadn’t the slightest idea how to help. Finding time for myself would have to wait.

I had little people who needed me.

The woman who asked the question was the therapist we were seeing before Finn was officially diagnosed with autism. At the time, I hadn’t a clue what autism meant. The therapist would give us weekly homework like, “Try playing board games with him.” Huh? What the heck did playing board games have to do with autism? And how the heck was that going to stop him from hitting his brother? But each week, I would drive all four kids to therapy. We would sit out in the lobby while Finn played Legos and talked to his therapist. Charlie played with toys while I tried to maintain some normalcy by returning phone calls to my girlfriends (in between breastfeeding the twins and reading my ever-growing reading list of autism books.)

I didn’t have time to worry about myself.

I would soon be grappling with a cerebral palsy diagnosis for Henry. I would soon have to fight for services with Finn’s school. And amidst it all I still had to feed everyone (cooking is not my forte). And go to soccer practice. And write milestones in baby books. And be a room mom for Charlie’s class. And remember to breathe in and out.

It was laughable in its absurdity.

I think as a Mom, I took on the responsibility of controlling everything and helping everyone all on myself. I read all the books. I joined all the groups. I immersed myself in anything I thought would help Finn. Moms all over the world do it all the time. I certainly didn’t invent the concept. We think that no one else can do it like we do, and we take our job pretty seriously, so we don’t let anyone try. We don’t ask for help when we need it. We want everyone to think we have it all under control.

Even in the face of completely out of control circumstances.

I have been so completely obsessed with autism over the past two years that I’ve forgotten who I am. Every waking moment is spent thinking about how I can help Finn. How to help him be happy. How to help him succeed at school. How to help him make friends. How to help Finn be happy in his own skin. How to make Charlie feel like his life is not wrought with sacrifice. How to make Finn not wish he were Charlie. How to make Charlie wish he didn’t belong to another family.

Last week, I saw an old friend from college. I haven’t seen her in probably ten years. She was a great friend of mine, but she moved away to the West Coast and we haven’t seen each other since. She called me and wanted to meet at the zoo because she was in town to see her parents.

We had a great day talking and laughing and chasing our kids around. It’s funny how ten years can go by and circumstances change, but old friends never do.

I barely mentioned autism once.

I drove home that day and cried my eyes out. Partly because I missed my old friend. Partly because I missed the old me.

The me who didn’t have a care in the world. The me who traveled far and wide to catch a Pearl Jam concert. The me who felt like she could take on the world.

I woke up the next day and joined the gym.

I have let my stress rule my life for too long. Literally, the day Finn was diagnosed, I called Weight Watchers and quit. I cried on the phone to the poor recipient of my quitter’s phone call and said, “My son was just diagnosed with autism and I can’t keep counting points because I have all these books to read. And I can’t keep paying for Weight Watchers because I really need a bowl of ice cream!”

She said, “I’m so sorry, honey, don’t worry. We’ll be here for you when you want to come back.”

And since that day, I’ve fed my stress with food. (Well, actually, since BEFORE that day, but let’s just say the stress eating has been epic.)

So, I have vowed to put myself back on the priority list.

I’m hoping that the gym will be good for me and for Henry and Tallulah. It will give us all somewhere to go during the day. Seeing people and being accountable, instead of holing up in the house and hiding from the world. Giving myself a healthy outlet for my stress. Creating a strong body which I’ve already discovered houses a pretty strong mind.

Putting myself on the list doesn’t make me selfish. I have to take care of me, so I can take care of them. Because if I’ve learned anything in the past two years, it’s that NOTHING will stand in the way of my family.

And I’m stronger than I thought I was.

The Truth

I haven’t been writing much lately. One part has to do with the four crazy kids running around my house coloring on the walls and the other part has to do with me.

I’ve been struggling with my “voice” on this blog.

When I first started blogging, I said I wasn’t going to “sugar coat” things. I started blogging because I wanted to express myself about raising a family amidst autism– the good, the bad, and the ugly. Only, I got scared. I didn’t want to tell you about the bad and the ugly. I wanted you to like me. I wanted you to like my family and most of all I wanted you to like Finn.

Because when I tell you that Finn is a sweet, caring, funny, energetic, thoughtful, and smart boy, I’m not saying that in spite of his autism. He really is all of those things. I felt like if I told you all of the struggles and the truths about autism, you would judge that part of Finn before you ever even knew him. And I could never forgive myself for that.

I wanted you to see the beauty, the joy, the quirkiness, the genius, and the wonder of Finn. I chose not to tell you about the fear, the anxiety (his and mine), the meltdowns, the impulsivity, the night terrors and the aggression. I didn’t expect you to walk away wishing you HAD a kid with autism, but I also didn’t want you to fear it. There are so many blogs out there spreading fear. I didn’t want to be one of them. (And I still don’t.)

There are some amazing autism blogs out there who inspire, and teach, and give hope. I wanted to be one of them. I wanted to be a part of the conversation and the movement that is changing the autism world.

But in doing that, I’ve stripped my blog of the truth. Like my post “The one about elevator anxiety.” I’d love to tell you that when I see Finn’s anxiety starting to flare, I always opt for the steps. But the truth is that sometimes we have to physically pick him up and put him on the elevator because we have twins in the stroller and an 8 year old who is getting nervous that his little brother is going to melt down in the middle of New York City. And the room is on the 9th floor.

I left that part out.

I’ve felt compelled to wrap everything up with a neat, little bow. To always find the silver lining. To give others hope. To give me hope, too.

I thought that’s what you wanted to hear.

But life isn’t always that way. Not every story has a happy ending. Some endings aren’t written yet. And some endings are just messy and raw.

I thought that if I told you the truth about our struggles that you would pity me or I would look ungrateful for this life. And, believe me, I want neither. Three of my four kids (and one horrific miscarriage) were conceived out of fertility treatments. Nothing about my “full hands” is by accident. Every time I take Finn to Speech and Physical Therapy, we pass by the fertility doctor’s office and I am so palpably reminded of how much I feared living a life longing for these four souls. Each of them were prayed for and wished upon and dreamt about. I would have given anything in the world to be sitting right where I am right now. No struggle or challenge will EVER change that. But I would be a liar if I wrote those challenges out of our story altogether.

I hope that someday my kids read my blog and feel my love, but also see my humanity. Someday, when they have kids of their own, they will realize that sometimes, more often than I am willing to admit, I was making it up as I went along. I hope they realize that I was doing the best I could and somehow that will still be enough.

People comment on my blog and Facebook posts about what a good mom they think I am and I feel like a charlatan. Because on most days I am barely holding it together. I have yelled things through gritted teeth more times this summer than I care to admit (although I just did). I’ve been so frustrated that I have literally seen stars. The truth is that just because I am an autism mom it doesn’t give me any extra patience or virtue. I wish it did. I go to bed regretting things I’ve said and rehashing impatient moments from my day just like everybody else. (I think.) And there are some days when I just resent how much easier it seems to come to everybody else.

Even though I know that’s not true.

I am not perfect. I don’t have this whole thing together. I wish this blog could be more like Mary Poppins and less like Nanny McPhee, but that’s just not my life.

And I have to live in the truth if I’m ever going to survive. Writing this blog is part of that catharsis for me. And I have to feel safe to be me.

So, from now on, I’m going to try and be more truthful on my blog. That’s not to say I’m not going to still try and find the good in things, but if some days things are bad, then things are just bad. It doesn’t mean I won’t pick myself back up again tomorrow, but I may need a word or two of hope from you. I will always be an advocate for Finn, but I’m going to stop worrying about being a VOICE for autism in the way that might get me into the Huffington Post. There are plenty of other bloggers out there for that. I will always try to do Finn and everyone else in my family justice. I would never want to write anything that would shame or hurt them. But this life and this blog are my story, too, and I have to tell it my way.

I hope you’ll still follow along.

Summer Bummer

“I’m borrrrrred, Mommeeeee.” 

It’s like nails on a chalkboard for me.

When I was a kid, “I’m bored” was a phrase you only uttered once. If my Dad heard you were bored, he would find an activity to un-bore you. This usually involved a basket of unmatched socks or a pile of freshly chopped fire wood.

We quickly learned the art of “not looking bored.”

Which meant I spent a lot of time outside running around in the woods, or riding my bike, or pretending to be asleep on the couch when my Dad walked in the room. Either way, my boredom was a secret best kept to myself.

Now, as a parent myself, I would love to give a “constructive solution” to my own kids’ boredom. Upon hearing the infamous boredom battle cry, I have attempted to teach the “I’ll show them bored” lesson, but having a child with autism apparently excludes me from those teachable moments.

Here’s how it went down…

“I’m borrrrrred, Mommeeeee.” 

“Ok, why don’t you and your brother go and clean up the playroom and then we can watch a show.”

Both boys reluctantly saunter off because they see the scary mommy look in my eye starting to gleam.

Things were going fine. I hadn’t heard much out of them for about 3 1/2 minutes. And then I hear, “No, Finn!” And then Charlie comes screaming into the living room. Finn poked him in the eye with a marker.

And that’s usually how it goes in our house. Boredom begets problem behavior. Problem behavior begets attention. And the cycle starts over again.

Home is supposed to be where we are most relaxed. Free to be ourselves. But for Finn, home is a constant frustration. Since summer started, Finn’s meltdowns have been increasing every day. His frustration level is on high, so when the smallest thing happens he cannot cope. If one of the twins touches him with a sticky hand, he drops to the floor. Yesterday, I took them to the car wash (because Finn loves it) and the man put a “frequent customer” discount sticker on Finn’s window and Finn went berserk! I had to pull over to try and rip it off.

I understand why it’s happening. Finn craves order. He’s not getting it. He needs to control something, so he is freaking out when it doesn’t happen. I get it. But, sometimes, “getting it” doesn’t make life any easier.

The hardest part was a few weeks ago when Finn saw the “summer school” (extended school year) bus drive by. He said, “Oh, there’s the summer school bus. I wish I were on it.”

I was deflated. Heart broken.

I was the one who chose not to send Finn to summer school. I wanted to create an “old fashioned” summer for him, complete with watermelon seed spitting contests and lighthouse climbs (everyone does that, right?) 

I wanted him to feel the joy of a lazy summer day.

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These pictures were actually taken on two different days. You'd be surprised how many lighthouses we've climbed this summer. Or maybe you wouldn't.

These pictures were actually taken on two different days. You’d be surprised how many lighthouses we’ve climbed this summer. Or maybe you wouldn’t.

After I bit back my tears, I questioned him why he would rather be in summer school, he said, “because I didn’t know how hard it was going to be with the babies touching my stuff.” I told him that next year the babies would be older and maybe they won’t touch his stuff as much.

He said he’d think about it.

I guess that’s all I can ask.

So, from now until next summer I will be on audition for Finn to choose my summer over summer school.

I’ll let you know how it goes. Until then, I’ll be teaching my kids the art of looking “not looking bored.” And I’ll still be the one matching all the socks.

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