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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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.

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.

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.

First week success!

The boys have been back to school for exactly a week and I have to say it has been going surprisingly well.

Finn’s first day went off without a hitch (which I posted about incessantly on Facebook. What can I say? I was proud!) He even went to the cafeteria with all the other kids! He has been riding the bus with Charlie (with the help of an aide). He is encouraging other students in his self-contained room to cooperate with the teacher. He is asking to spend more time in his inclusion class. It is all really amazing stuff.

And then, last night, he joined the Boy Scouts!

Last year, when Charlie started Boy Scouts at a new troop, Finn said he wanted to join. So, I took him to the first meeting and he ran out of their like I was trying to get him to walk across hot coals. I didn’t force him. I just let it go. Then this year, he said he wanted to join again. I was pretty sure it was going to go the same as last year, but I thought I’d give it a try.

We walked into a large Church hall filled with 70 rambunctious boys and their parents and Finn said, “Is this where Boy Scouts is always going to be?” I said, “Yes, buddy, is this ok?” He said, “Yea, I like it here.” When the meeting started, he sat with what would be his “den” and listened and laughed along with the other kids. He even did the little Boy Scout peace sign thingie that they do when the leaders want the Scouts to be quiet! It was utterly adorable. I sat there in amazement and watched my boy shine.

He told our behavior aide (who I brought with me for backup) that he knew the boy sitting in front of us. She whispered it to me, so I said to Finn, “Is that John from your school?” He said, “I think so. Ask him to take his uniform off and I’ll let you know for sure.” He couldn’t recognize the boy out of context! It was so sweet in its earnestness.

They had a presentation from a local sea life observatory and they let the kids touch the animals afterwards. Finn, apparently knowing his limits, said, “Let’s get out of here. This is a disaster waiting to happen!” I stalled a while because Charlie wanted to kiss the horseshoe crab.

Afterwards, Finn asked when his next meeting was. I told him it was in a few weeks and he asked if he could just stay there until the next meeting.

I am so proud of that boy. I could could cry right now just thinking about it. But Finn’s success has been a long time coming. It was this time last year that Finn was still overturning desks in school. Finn’s desire to join Boy Scouts and spend more time in his inclusion classroom is really a testament to Finn feeling safe and supported to try new things. When he feels safe and supported, he is happy and calm. And a happy and calm Finny makes everybody (at least our whole family) happy and calm, too.

Whenever Finn comes home with a good report, I always worry in the back of my head that the school will start trying to take things away from him. Instead of seeing that the supports are working, I fear that the school will see them as superfluous. I’m not sure if that makes me a pessimist, a realist or just a special needs mom. But it will have to be a worry for another day. Because my boy is growing and succeeding and I have to keep that in focus. No matter what.

In one, short week, Finn can add Boy Scout and cafeteria eater to his list of accomplishments! I think that’s pretty amazing!

Back to school jitters

School starts tomorrow and I’ve been a nervous wreck all day.

It doesn’t help that Finn just cried himself to sleep saying, “I hate school!” Of course, Charlie swooped in and tried to tell him all the great things about school. Most of which, Finn couldn’t care less.

School is an entirely different place for Finn than it is for Charlie. Social situations come much easier to Charlie. In fact, we made an impromptu visit to Charlie’s school this afternoon (to settle my nerves, not Charlie’s) and I asked him if he knew the principal and he said, “Yea, she’s really nice”– Charlie thinks everyone is his friend. And he’s usually right.

Finn thinks the exact opposite.

School is a big, confusing place to Finn. People are loud and unpredictable.

We went in to meet Finn’s teachers today. He will be spending about 80% of his day in the general education classroom with his aide. His teachers and his aide are awesome! They fawned over him. He, of course, ran off and tried to pick up his brother. Every time they tried to talk to him, he made rude remarks (Finn’s defense mechanism).

Last year, I spent a lot of time making sure Finn would feel as included as possible. He wanted to be in Mrs. M’s room more last year, so I wanted to make sure he felt like he was included right from the start. I put a lot of time into making sure this happened, so I’m hoping it goes well.

He did so amazing in Mrs. M’s room last year. He was well-behaved. He earned student of the month TWICE! He even had some boys that he liked. But starting a new school year feels like starting all over again at ground zero. There’s always the chance for Finn to get back into old habits. When he’s in this negative place, it’s easy for his anxiety to bring on problem behavior.

And then there’s the added stress of THE BUS!

At the end of last year, Finn proclaimed that he wanted to ride the bus with Charlie. For two years, Finn has ridden the special needs bus. There were a few aides on the bus and only a few other passengers. And it came right to the front door (which was awesome!) The only problem was that Charlie wasn’t on that bus. Charlie rode the regular ed bus. You know, the loud, obnoxious, raucous regular ed bus. The bus that even Charlie (“friend to all”) had trouble with bullies on. And now Finn wanted to ride it.

I labored over it and labored over it. I talked to him about it a million different ways. But he insisted he wanted to be with his brother. Charlie is moving to a different school this year, so the bus ride would be the only chance for them to see each other. Finn was very anxious about not having Charlie in his building anymore. This seemed an adequate remedy. (Except that he had to ride the regular ed bus.)

I had separate conversations with Charlie about it. He knew Finn riding the bus would mean that he could no longer sit with his best friend. He wasn’t thrilled about the idea, but he was willing to make the sacrifice for Finn. His number one concern was Finn’s behavior. He wanted to make SURE there was going to be an aide on the bus. He couldn’t “handle Finn by himself.” I assured him there would be.

Now here we are. The night before the first day of school and I am second guessing every decision I fought tooth and nail for. Charlie is upset that he can’t sit with his best friend. Finn doesn’t want to go to school at all. And my stomach hurts.

I was lying with Finn at bedtime trying to quell his fears. I think he could tell I was all smoke and mirrors. I tried walking him through his day, but he had a complaint about everything I brought up. I asked him where he wanted to eat lunch. (I had arranged that he would eat lunch in the self contained classroom, since the cafeteria is a major cause of stress for him). He asked, “where are all the other kids eating?” I said, “In the cafeteria.” He said, “Oh.” I told him he could go to the cafeteria if he wanted. He said, “No.” I said, “You can eat in Ms. B’s room.” He said, “No. I just won’t eat lunch.” My heart sank. I said, “Well, you think about it.” He said, “No, you think about it.”

I think his brain is on shut down. He is so worked up about everything that he can’t make a decision about anything. That’s kind of how I feel, too.

I’m hoping tomorrow goes better than I anticipate. Because it seems the only one who is excited is Charlie!

Maybe it will all feel better in the morning.

Let’s hope so!

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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