Yes, we are still here. Please stay tuned... 

And Merry Christmas!

Flowers in a Bottle

When you reach those years of hormones, aggression, confusion, frustration, wild swings, and moody depressions, it is a good idea to keep something to remind you that you aren't talking about your hormones. It isn't your fault. And you are still a human being, an adult human being who is allowed to like a little something for you.

Mine is a little bottle of perfume.

I'm not a big wearer of beauty products. I don't own any make-up, and haven't worn any since I got married. Well, maybe once since then, I'm not sure; I think I put some on for a job interview once, maybe twice. I'd have to go out and buy it if I wanted to wear any today. I'm not a fashionista. I used to wear jewelry, and plenty of it, but with babies, you have to mostly lay off. My husband gets me some beautiful pieces. Every once in a while I sneak into my jewelry box and watch them sparkle a little, because they are just like his eyes. I don't get to wear them much. Perfume was something else I didn't wear much. I had some nice ones. I wore Anais Anais when I was much younger, and I liked Sunflowers a lot; my sandalwood and mango oils were always nice. For a while I had a kind of spritzer of lilac, and one of honeysuckle, that were lovely, but the scent doesn't last long with those. I like rose water, too. But I could never finish a bottle quick enough, because I just don't wear a lot of anything. Not even perfume.

With showers not as prevalent as they once were, perfumes became more important- after the shower, it was an indulgence, a statement of being human again, to use those spritzers. Ready to jump back into adulting, while smelling super good.

My mom wore KL when I was growing up... on special occasions. Whenever the KL went on, something good was about to happen. Dinner out. See the grandparents. Going shopping. She would dress up and look beautiful and smell awesome, and that was my mom. I can detect KL from a room away, and think, "Mom!!!"

I hope my boys will someday get that whiff of Daisy and think, "Is mom home?"

Mom bought me the first bottle, and it was love at first sniff, after the shower. It had been a rough day, and it was a few minutes I stole for a shower, with Allan home and kids distracted. A few spritzes later, and I was ready to adult again.

And that was when I thought, you know those folks who go about with too much perfume or cologne or whatever on? They must think they smell super. And I bet it makes them feel good to smell super. It must help them be ready to adult again. So I gave myself some more spritzes.

Because the perfume ain't for you. I like it. It smells fantastic. And it's for ME.

Summer

Here we are, knee-deep into it, and where have the posts been? It is getting harder to decide what to post. This has been a bit of a crazy summer, and jam-packed with boy adventures.

Off on summer adventures!

Summer is always an odd time for us. Joey's schedule is different. While having a schedule at all is always good, the ups and downs of things being different remains. We have a new teacher this summer, and we originally were told he would definitely be Joey's teacher in the fall; now he has been offered a contract with the regular school system, so we don't know- we have to wait and see what the new teacher decides to do. Will we have yet another transition? How far will Joey be set back if we do?

So the best thing is to fill what we can with other activities, and keep him busy and thinking. It is a battle- Joey versus Anxiety, and we want Joey to win.

Secret Agent Boys. Not so secret, actually. 

Our arsenal is not without tools and weapons against the foe: after all, we have The Pool. Joining a local private pool has been a really good investment for us. Yes, there are some people there who really need some education, but most of the folks now know Joey, so at least they aren't blindsided by him.

It is a great way to keep cool, get in lots of exercise, and have lots of fun. Most years the boys have kind of done their own thing in the pool unless they were the only ones there (which happens a bit when you're in a small, private pool)- but this year, they have stuck close to each other. This is not always a good thing, as like all siblings, they also get on each other's nerves. But for the better part, we have brothers finding ways to connect and play together.

Bumper cars!

Shy Guy wins the race on the Standard Car.

A new tool in our bag is Funland, a local arcade and amusement park. It includes video games, claw machines, those things where you push the coins along the levels (my dad used to ROCK at those), and some rides. I think they also have mini-golf. Some years ago, when we first tried it, disaster ensued- too loud, too flashy, too everything. We stuck to our beloved Chuck E Cheese (which, you should know, serves beer). However, there are not a lot of teenagers who hang out at the House of Mouse- so we eased our way into another go at the bigger, noisier, crazier step up in the world.

The lure was bumper cars and go-karts. Joey's love of Mario won at last.

Joey also had his beloved theater camp. The last couple of years were not a huge success, with the changes in the staff and the issues with dance camps and art camps and Joey's anxiety. This year, the program we had been participating in more than doubled the price, so we were disappointed to have to skip... until we found that the lady who ran the other program before all the mess had started a new program. Better yet, she had secured funding so that all the campers were able to participate for free.

Boy in his Element

Joy ensued.

Joey was back on stage, in a great Sea Adventure!

He did sea creature dances, and made his very own Koopa Troopa costume (OK, it was sea turtle costume... but now that the play is over, it is back to Mario!), and enjoyed himself thoroughly. A big thank you to STEP-VA and Ms. Monroe, for giving Joey an anxiety break for a week. He needed the breath of air.

Proud Boy. Proud Dad. 

Andy also had a camp, so we had some adventures that were just Joey and Mom. I don't get a lot of Joey Time now- school, school, school, all the time. His favorite adventure was going to the pet store, where he could check out the kitties for adoption (and beg for one), look at the fish, and check out the small pets (you know... mice. Guinea pigs. SNAKES.)

He named it "Slippy." We did NOT take it home. 

Taking photos on the ipod. 

Hi, Fish!

 We also took a trip out to see Allan's family in Tennessee. Long drives are always an adventure, but the treat at the end of the road was well worth it.

Hi, Aunt Emily!

We had the biggest sparklers we have ever seen. 

We spent a good bit of time hanging out with Granny Ann, which mostly consisted of playing Wii, petting Granny Ann's cats, and setting off fireworks that are illegal in Virginia. They were pretty cool.

Showing Granny Ann how to shoot tanks.

Joey has decided Allan grew up in a mansion. I think he enjoyed himself. 

And so the summer is moving along, with school days, pool days, and new headgear. The beach isn't happening until September this year, so we have plenty of lazy days ahead. More adventures to be had, more world to explore, and more Minecraft to build.

Ah, the life of a Boy.

Year One, Done.

Our first year at our new school is complete. Joey finished seventh grade. It was an emotional ceremony, as the students thanked their teachers, therapists, and principals for... well, for us, for saving our child. He was drowning. Now he is moving forward and learning again.

Our Assistant Teacher became emotional, and understandably so- how can you not, when you know a good thing is happening, and you are part of it? And Joey turned to her, and signed "safe" (they use hands, palms toward signer, fingers interlaced and thumbs up, so that it make a "safe wall"), and assured her, "You don't need to cry. You're safe, Ms. S." Then he offered her a hug. They signed about being safe together.

That's when you know you fought the right battle, and won it. Joey feels safe here.

That makes all the difference in the world.

18 Years

Still going strong.

Luminaria

Joey has a lot of difficulty processing the whole idea of death. Already a tough subject for young people, this can be extremely daunting for Joey in understanding that life ends, and there is a permanence in death that he just cannot wrap his brain around. It becomes a huge anxiety trigger.

Happy Memorial Day.

This is the 20th year of the Luminaria at Marye's Heights. I feel it is important for my boys to understand that freedom is not free. People die for their country, their families, their ideas. History isn't all cool houses, quaint costumes... and weaponry is not just cool toys.

Wars are real. And they effect everyone.

I had Allan drive us closer to the battlefield to save our energy for climbing the hill. It was a great plan. We made it up just fine. Joey was being Shy Guy for most of the walk to the gate; andAndy wanted to look at more of the plaques about the battle, and the Kirkland Memorial. Anxiety rose as we neared the gate, where the crowd was bottlenecked to enter the cemetery. We got through, and headed up. I was steady talking about what Memorial Day is, and then the Battle of Fredericksburg. We talked about the union soldiers likely reaching our back yard, but only about a block or two closer to the Heights. We talked about Gettysburg. We talked about how the site became a cemetery for soldier who died in the battle, with some burials for later wars. They liked the paper bags and the pretty lit walkways, and Andy wanted to know why some of the headstones were smaller than others, and what the number on the tops meant. We talked about each grave having 2 lights, because often more than one soldier was interred there, and it wasn't always known who was buried where.

Then we reached the top, and both audibly gasped.

There are over 15,000 soldiers buried at Marye's Heights.

Joey understands that cemeteries are solemn places, and that when you see a sea of lights marking graves, he is supposed to feel sad. Confronted with that sea of sacrifice, he was sad. So we then talked a while about what he was seeing, and why it was important. Yes, it is sad. But it also important to remember, and respect, and think about what others do to keep you safe, free, and able to enjoy all the things of life. These were people who sacrificed their lives for their country. For all of us.

 We also talked a bit about the Civil War, and why people were fighting. Andy observed that thinking people are less than human just because their skin is a different color is plain stupid. I must admit, I totally agree with him.

He wandered about the graves, looking at the different stones, the names, the numbers. He was upset when the light failed and he couldn't read the names anymore. As he said: "These are real people. We should know their names." I think he was bit sad that we didn't know all the names. Only 2,473 of the soldiers buried at Marye's Heights are identified in marked graves.

We had to step aside to let the bugler through, and he played a lovely rendition of taps. Both boys managed to stay silent through it. Yes, even Joey. We talked about that silence as a show of respect.

We walked home, two boys quieter than they were coming in. They have a lot to think about. 

Climbing the Ivy

Today is Ivy Day at Smith College, my alma mater. Yep, that one on the right? That's me... 22 years ago. 

Want to hear something else funny? That dress was a size 18. I had difficulty finding it, because walking into a store and finding clothes in a size 18 was almost unheard-of 22 years ago. I loved LL Bean clothes, because they came up to a 20. 

Yes, my friends, when people fuss about people being 280 pounds, that is what 280 pounds looks like. That is what we consider "fat" in this country.

I dream of being a size 20 now. An 18 seems out of the question. 

I should note some other things in this little throwback. I had known the man who would be my husband about 8 months by this point- the beginning of the fall semester. I had never seen him. We played an online game together, but they were text-based then (I know, so quaint now, but it was awesome- like a living book, being written right in front of you! And you were IN it, and helping WRITE it! I wish people still played those.) 

I was excited to start a new life in Wisconsin. How much colder could it be than New England? (Answer: A WHOLE LOT.)

I was an odd duck in college, but not as much as I was in high school. Most of the folks around me were also odd ducks, which means, of course, they were powerful, awesome people who continue to be powerful, awesome people. I always think about all those awesome people, those women I went through college with, and am astounded that I ever knew them. 22 years later, these women run businesses, schools, libraries, laboratories, political offices. They are not just doctors, lawyers, scientists, writers, artists, teachers- they are among the BEST doctors, lawyers, scientists, writers, artists, and teachers in the world. 

My life isn't exactly what I thought it would be. I had dreams of roaming around India, writing books about religious practices and history. I did manage to get to India, just not as long or often as I dreamed. I spend most of my days talking about art and culture, but not very often about the art and culture of India. 

Most importantly, I have my beautiful family. It isn't the family I imagined, but the amazing, wonderful, beautiful roller-coaster of truth is harder, wilder, more vibrant, and more magical and amazing than I could have ever imagined.

Right now, my son is "forcing" my husband to eat chocolates. They are both roaring with laughter. And hugs. And wonderfulness. 

I will say, I couldn't do what I do if I hadn't had the education and training I got, the friends I have (who are marvelously understanding), the skills I gained at Smith. I hate to think what would have happened to my kids if I didn't have those skills. The true value of a liberal arts education? You can go out and train yourself to deal with anything. You know how to learn.

Happy Ivy Day to all the new alumnae, and all my friends who shared in the wild years.

Happy Blogiversary to Me!

Well, 9 years ago today, Life With Joey was presented to the world. How far have we come?

Nine years ago, Joey was four years old.

He had about 30 words he could regularly access. He loved his Bus- the one he carried with him so constantly, when he once put it down accidentally at Wakefield, we back-trekked the whole way around the walking trail until we found it, because it was Bus.

We were just learning that we were Joey's sole real advocate. We were just starting to butt our heads against school staff and school politics. Other people were helpful, offered advice, mentioned some things that might help, but they all had other kids and other jobs and other things to worry about. We have Joey and Andy, and that's all we worry about. If what they need is good for other people, too, yay. But nine years ago, we were still trying to work to get everybody what they needed. We learned- Joey and Andy first. Otherwise, we get left in the cold. They get left in the cold.

We were just starting to realize that Joey would likely need an aide to be in a regular classroom environment. Unfortunately, it took him running out the door from stress and anxiety before we could get one... six years later.

Joey loved Pinky Dinky Doo, Oobi, and Little Bear. He loved Click, Clack, Moo: Cows That Type. He loved to sing Waltzing Matilda.

Well, some things don't change, eh? Only now we sing Let It Go instead of Waltzing Matilda.

I hope you've been enjoying the ride with us so far. I know there are longer gaps now, but getting older means there aren't so many of those small triumphs and quick cuteness, and often what I find worth writing about, Joey and Andy don't want shared. That's OK. This is their lives, too.

Today, I have a teenager and a preteen. Joey may still like Little Bear, but he also likes Mario, and video games, and riding his scooter. Andy is into the Avengers. They like to hang out with their friends, but they also still like bedtime books. Neither is still in public school*. Nine years ago, Andy hadn't even started school!

Joey is better at conversation, but has a unique way of using language that can still cause communication issues. He loses communication skills when he gets upset, anxious, and stressed- good or bad stress. Frustration and anxiety are still our dire enemies, to be battled daily. Sometimes we win. Sometimes we don't.

I have appreciation for Signing Time, Social Thinking, and Zones of Regulation. We are still discovering new methods to work with, new interventions and coping skills to try, new angles for accessing skills even in crisis.

With these tools, Joey now can- and does- run his own snack cart business at school.

That is how far we have come.


Where did the time go?

*Technically, Joey is in public school, but is in a private placement paid for by the school.

Teenager

That's right. It's the big 1-3. Joey is an official teenager today. 

That's my little man. 

His Royal Majesty, King Joey. 

Grandma even allowed balloons in her house for the occasion. 

Incliding one that swam about the living room. 

Yep. 

Dinner at our favorite Japanese steakhouse! Joey loves the "magic show."

Brothers, adventuring together.

So Literal.

Overheard at Grandma's:

Grandma: Joey, want to come help me get ready to dye eggs?
Joey (concerned): You're going to kill eggs???


Sometimes we need those reminders that Joey's use and understanding of language is unique.

Or at least shared by Amelia Bedelia.

Welcome to April

I know, I haven't been here in a while.

We've been on a roller-coaster ride. Some was expected. Some wasn't. Puberty is upon us. No one seems to know what to do to help him through it. Spring is here. The usual strategies are apparently out the window.

And oh, look, Autism Awareness Month. Yay.

Hey, we are aware. So, so aware. Today Joey made sure his new school was really, really aware.

How do you discipline a child for whom the usual methods have absolutely no effect- or worse, make it worse, and even reinforce the behavior? What do you do when the mental health support you finally managed to get suddenly stops, because the therapist moved away and no one else handles the special needs of your kid?

I need my kid sleep at night. I need my kid to quit cussing people out just because he is upset or scared or anxious. I need school to stop having breaks and let my kid have a couple of normal, routine weeks. Seriously.

I know he is better where he is than at the regular school, and is moving along academically again. But these are the kinds of days that I just want to cry. How is he going to manage to get through adult life if he can't even handle an environment that was especially designed for him, full of specialists on his needs?

What are we supposed to do?

Shades of Grey

"You're driving too fast, Mom. The speed limit is 45. You are going 52. Speed limits are made to keep us safe."

Joey has hit the age when he realizes that driving is cool. It lets you go places. It puts you in control. The driver's seat has always been a fascination, but now it is generalizing to the idea of growing up and gaining freedoms.

We are driving to the dump. My mom doesn't have trash collection, so Joey is with me to do a Trash Run, where he can help me with the bags (tossing them into the big compaction hopper is awesome heavy work) and watch the trash be compacted away. It's also a Ride Alone With Mom, which is a treat; he gets to sit up front with me and ride.

"I'll never drive," he says suddenly. His voice loses the mechanical quality at its edges for a moment, a pause in the general driving script to make an observation. But I know this new tone, too; and I suddenly feel that turn in my stomach that always accompanies it.

"Of course you will, Buddy," I assure him. It is the expected response, and I want him to feel the familiarity, the cheerfulness, the casual air of my response.

"No," the grief in the word could be a whole conversation, but he goes on. "My age limit is twelve and under. I will never be a teenager. I don't have a birthday."

It's a tone that makes you want to leap out of your soul and hold him, until all that pain he is expressing goes away. I have never figured out why he is sad, or why it comes out when it does.

Instead of holding to the tack and spiraling into the abyss the conversation teeters upon, I decide on something else.

"There are three basics of driving," I put in my lecture-voice, "The two pedals- this is the gas, this is the brake; and the steering wheel." He stops, his head tips to one side, he looks at my feet.

"The gas pedal makes it go faster. The brake pedal makes it stop," he chants.

"One thing to remember about a car- it is made to move. So you don't even need to press the gas pedal to make it go- you just turn it on, and it will move forward. You press the gas pedal to go faster. To go slower..."

"You hit the brake. Not too hard!"

"Not necessarily," I grin, throwing in a little wrench to get him thinking. "All you have to do is stop pressing the gas pedal. See?" I take my foot off the gas, and we slow down. "You use the brake when you have to stop faster than just letting up on the gas lets you."

"I'll use both my feet to drive," he announces, still look at my feet.

"No, actually, you just use one foot," I observe, stepping on the gas for a moment to keep us moving. "When I want to stop, I just move my foot from the gas to the brake," I clarify, and demonstrate.

For a moment, he is fascinated. Then I blow his mind by showing him that after a turn, you just let the steering wheel go, you don't turn it back. He stares at my hands a moment, frowns, the script returning.

"The speed limit is 45. You are going too fast."

"Well, that's one thing you will have to learn about driving," I sigh. "Sometimes the rules bend. I know how to drive this road. If you are out on the Interstate, the speed limit is 65. But if everyone around you is going 70, you don't want to be a traffic hazard- you need to go 70, too."

This totally Does Not Compute.

"But the speed limit is the rule," he spits out in dismay, a phrase I have never heard him use before. In the face of the idea of rules that bend, but not break, I glimpse the black-and-white thinking that dominates Joey's world, in a way and with an intensity I have never really seen before. Perhaps as he gets older, he is expected to understand more about shades of grey, and so it is now more obvious.

He returns to the more comforting gas=go, brake=stop. Then he returns to never getting any older. No birthday. Twelve is his age limit. Its a conversation that I find terrifying, simply from the frankness with which he presents the idea of not ever being a teenager. That he will never learn to drive. That he will never have a birthday.

My stomach lurches. My eyes burn. I show him turning the wheel again. He is distracted again. Now he chats merrily about owning a truck when he grows up, so he can "haul my things easier."

And I search for my heart in the fog of grey.

HAPPY NEW YEAR!!!!

Sending you all hugs and great thoughts, and hopes for a fabulous year ahead!