Monday, June 30, 2014

Who Knows Best

"Hey Mom!" Andy shouts from the door, "can I go with M to the pool?" He already has his swim stuff on. They are headed to the big public pool. Having a friend around the corner is big excitement for Andy, and he is totally enjoying it. We are fabulously lucky. They are awesome people, and they love Joey, too. M's little sister T is particularly fond of Joey, because they seem to talk at the same wavelength, even though she is younger.

"Do you want to go to Big Pool with Andy and M?" I ask Joey, calculating how long it will take me to get into a suit myself, and what would need to be packed to survive an afternoon at a very crowded public pool, instead of the Smaller Pool where we are members.

"No," Joey replies without hesitation, and suddenly settles in front of his computer. This is unexpected reply; I blink, then turn to a crestfallen Andy.

"Well, you can go ahead," I say, to Andy's delighted surprise. After all, I know M's parents are like me- eyes on the children at the pool. Not time for reading or facebooking. Besides, Andy hasn't passed the swim test at the Big Pool for the year, nor has T, so they will all be in the shallow end- all being in the same section makes it easier to watch them at Big Pool. He'll be safe, have fun with his friend, have a relaxing afternoon at the pool. That's a Go.

As the door closes, my brain starts whirring with ideas for engaging Joey for the afternoon. Crafts? Books? Games? He gets up from the computer, disappears upstairs, giving me a few minutes to regroup. I start a plan of action.

He appears, fully dressed for swimming, with towel.

"Let's go to Smaller Pool," he announces, rather than asks. "Not too many people."

It is a victory of self-advocacy that I gladly reward by grabbing my car keys.

Wednesday, June 11, 2014

Positive Reinforcement

Joey has discovered Facebook. No, he doesn't have his own account, he isn't old enough for one. I haven't let him start a side page from my account, either. However, he has figured out that Facebook communicates with people. It's kinda awesome.

It started with photos. I started asking him if it was OK to put photos of him on Facebook. Although the response was almost without exception the "yeah" he gives that makes me wonder if he actually processed what I said, or just gave a vague answer because he knew I had asked a question and expected one, I now suspect he was paying more attention that I was crediting him. This is, unfortunately, not an unusual situation for Joey. I did continue to ask, just in case- and now I am so glad I did.

Then he started asking for me to put photos up, then videos. "Facebook it, Mom!" became a common request. "Let's make a video and put it on Facebook!" And people started "liking" them. Positive feedback is something Joey lives for. So now he asks "how many likes did I get?" Or I will cheer him up by showing him likes to a photo or video.

Now he is dictating status updates. "Mom, I want our friends on Facebook to know..." "You're on Facebook! Say..."

So if you are following me on Facebook, and you see "Joey wants you to know...", rest assured a little man is at my elbow, eagerly awaiting those "Likes." They totally make his day.

Tuesday, June 10, 2014


I have advice for every sane person on the planet: never read the comments on news sites. Comment sections have becomes fuming bastions of ignorance, hate, and widespread evil, stewing in tempting little bites of illogical nonsense that make one want to scream at the computer at 2 am.

Heaven forbid that article bring up the issue of special needs services or mental health services. Or both.

The general consensus out there appears to be that people who need help for their kids should go out there and get it. What's wrong with those parents, anyway? Lazy, selfish beasts raising brats to run wild, and then don't go out there and get them therapy if they need it. Or they over-diagnose their kids so they can drug them into oblivion. One or the other- and both opinions often from the same mouths.

What they don't know is that it isn't that simple. One, you have to know what services you need. Two, they have to actually exist.

I've been impressed by the growing range of services available to kids (mostly kids) who need a lot of support to make their way in the world. We have seen a lot of programs (relatively speaking) for non-verbal kids, kids with severe behavior issues, kids who need to be taught how to learn and respond, so that they can be taught skills they need to get through life, such as bathing, toileting... even simple things like walking. There are whole schools dedicated to teaching kids basic life skills, skills of daily living, and basic academics. There aren't enough, but there are more than there were. Or maybe we just know about more of them.

Then we get told Joey is "too high-functioning" for their "program model." Then they start listing off other programs, pause and note he is "too high-functioning" and "too verbal" for those programs, too.

Joey's school is having trouble keeping him safe. The problem is, most of the time, he is fine. But every few days, sometimes with a break of a couple weeks, he is not fine. Those are the times we need to address, so that when he finds himself in trouble, he has skills and strategies to fall back on. We need him to use that good time to learn to cope with the hard time.

You know, like everybody else. Funny that.

After all, waiting until a child melts down to try to address melting down isn't much of a help, is it? It is far better to teach someone a skill, rather than wait for them to fall on their face and then say, "oopsie, you should have done this, then you wouldn't have broken your nose!" Thanks for nothing there.

So we have decided he needs alternate educational placement, and are on the hunt for a school. The most poignant part of that meeting? Listing schools, to watch everyone frown and say, "well, that one won't be a good place for Joey..." Why? Because he's "too high functioning."

Except he isn't functional. That's why we are having to take him out of school.

What do you do with a child who is highly intelligent, yet has occasional behavior issues due to anxiety and depression? Where do you get them the mental health and behavior services they need? Where are the programs to address kids who are "high functioning" yet not functional?

Even if you could find such a program, who pays? Is this an educational program, or a medical intervention? Guess what. The schools will tell you its a mental health issue, to be addressed by medical insurance. Guess what the medical insurance tells you. Joke's on you.

In other words, there are cracks in the "system." They aren't the great yawning chasms they were only ten years ago, but they are too wide to always jump across. People get stuck in them. People like Joey.

You know that saying, if you can walk, you can dance, if you can talk, you can sing? Well, what if you can't? Where is the help to bridge the gap?

You can't enroll in a program that doesn't exist. You can't get a service that doesn't exist. All the money in the world cannot pay for an intervention that does not exist.  Those are the true cracks in the system- the services that simply are not out there. At all. Anywhere.

Then people complain that people get stuck in the system of dependence, welfare, government services... well, what do you with a child who is fine most of the time, but might melt down suddenly? Unless you can teach that child to cope, how will they ever get decent employment? How will they become a functioning, taxpaying citizen? Where are the services to help them overcome these lower hurdles, that are still too high for them to get over themselves? It is like the government building that has ramps everywhere, except the front door, where there is a step. Not a huge one, not a very big one, and only one, but there it is. Then they wonder why people in wheelchairs can't come in and pay their taxes, which have to be paid in person, no proxies allowed...

So don't read the comments in news articles. When you are caught in the cracks, you don't need to know how ugly and ignorant people are of them. You are too busy trying to claw your way out, with people who keep dangling ropes just out of your reach. You don't need more.

Thursday, May 29, 2014

Please stand by

I look over the charts, the data, the evals and explanations and IEPs, my son's life in black and white and red all over. I ponder how much of this information is accurate, how much is not, and how much gets steamed out by pressing all these numbers onto a piece of a paper in a printer.

It's a big IEP day for us. With all the depression, the anger, the helplessness, the sound, and the fury.

I may not even get to tell you today what is happening, or why.

I just wanted to send a thank you out to my readers for being here with us today. For caring about us. For reading along as we clack up the hill on the roller coaster, and remind us to hold on tight.

Or open our eyes and put our hands in the air.

Please stand by. 

Saturday, May 24, 2014

Living Joyously and Laughing Freely

Happy anniversary to my love and my joy, Allan.

Seventeen years in the blink of an eye. Love growing with you!

The world has been more limitless than we imagined. So glad to have you as my partner in exploration.

Friday, May 23, 2014


It's Friday. The week has been one of those hard ones that make you really want to just hug the boys tight and let them know you love them, no matter what is ahead. There have been ups and downs and stress and meltdowns and tests and rocking of the boat. I spent last night typing up a comparative of Joey's school evals over the last 10 years. He's been in school 10 years. I spent one night looking over Andy's IEP and an afternoon in a fruitless conversation with his principal.

Joey hops off the bus. He starts talking about the weather. He wants to know where Luna is. I follow him into the house. My knee isn't going to bode well for a walk today.

"Mom, let's watch Frozen."

I hadn't seen Frozen. I've been putting it off. It's about siblings. Somewhere in the world, I have a sibling. You can see where I might put this off.

But Joey wants to watch it, it's Friday, my knee is bad. He wants me to see it. His teacher likes it. He asked for it as a reward for having a really good week and doing some cleaning and getting honor roll not long back. He starts singing a song from it. I turn on the TV.

Halfway through, he starts singing again. Then he starts the processing, out loud and in the air between us. Joey has trouble with this kind of intense emotional processing, and he immediately starts attaching his world to the characters in a distressing way. His cheeks begin reddening.

"I'm like Elsa," he starts. "I've shut Andy out. I'm dangerous!"

Two minutes later, it's reversed. Andy is Elsa, and Joey is the one "shut out." Then I'm accused of "shutting him out." He understands the pain. He understands the words. He tries to attach them to something concrete, something he can relate these emotions to. He understands his role as Elsa, and hiding himself. He goes outside and sings.

We work through the hurt. I have my own feelings about who to attach to these roles, push it aside to stay focused on Joey, and Joey's processing. We talk about why Elsa hurts, why we don't ask him to hide who he is. We love him and want him to be who he is. I try to assure him that he is far more like Kristoff than any of the other characters: brave, competent, caring.

"Andy doesn't love me." He begins to spiral. I can't stop it. I can assure him that we have true love for him, that momma does. But he insists that Andy shuts him out.

I call up the stairs. Andy's head appears.

"Andy, come down here a sec," I coax him into the den, then turn to Joey. "Well, here he is. Ask him yourself."

"Andy, do you love me?"

"Of course I do!" is the ready answer, and Andy hugs his brother.

"It's true love!" Joey clicks the understanding in place, hugging Andy. "And you'd die for me?"

"Well, duh," Andy replies, releasing his brother as a matter of course, begins his own pacing. Yeah, they're brothers. And it's True Love.

The clouds break up. Joey starts singing again. He's being Elsa. He's making his own "windstorms." The pain, however, is gone. It's a feeling of power that replaces it, a fun in pretending to toss wind and ice about, to sing a song about freedom to be yourself. Joy returns to the singing.

Andy goes back upstairs to play with his Pokemon cards. Joey goes out to the yard to sing. Outside, I can hear the refrain.

Here I stand. And here I stay.
Let it go.

Wednesday, May 21, 2014

Happy Birthday, Andy!

When did he grow up so big???