Sunday, May 24, 2015

18 Years


Still going strong.

Saturday, May 23, 2015

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. 

Sunday, May 17, 2015

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.

Saturday, May 09, 2015

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.


Friday, April 10, 2015

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.


Saturday, April 04, 2015

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.


Thursday, April 02, 2015

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?