Preparing for the Bee

Joey is going to be in the third grade spelling bee tomorrow. We're really excited. He was in the first grade bee, but we had some miscommunications about his needs, and he got over-frustrated and threw it in the fifth round. The memory made him anxious enough that he purposely threw the classroom bee last year, so he didn't get to be in the second grade bee. So the fact that he's decided to give it another go, that's a big deal- especially with all the anxiety he's had this year. Seriously. Wow.

So I've been trying to help him prepare. Most kids, when they prepare for a spelling bee, practice- well, spelling. Not us. We practice things like sitting, listening, facing a person who is speaking to you. We talked about getting a prize if he spells all the words right. But mostly, he looks at me like I'm insane; you can almost read in his face: "It's spelling, mom. What's the big deal? What's to practice?"

This afternoon, he actually came home excited about it, saying, "My spelling show is tomorrow!" So I managed to say, "That's right! I bet you win it!" He blinked, and gave me one his processing looks, then happily cheered, "Yes! I will win!"

I think he is just now realizing it is a game, and that there is a "winning." I think I might just get something to bring with me tomorrow as a prize, whether he wins or not. Because seriously, he's already a winner for giving it another try.

In Which Momma Realizes Her Boys Aren't Babies Anymore

Though they will always be MY babies.

I tend to do spring cleaning during January. We're not in the middle ages anymore, after all. You get things done when you have a minute to get things done. This year, I am tackling the boys' rooms. We have a bad habit of tossing all the toys the boys have brought downstairs into big bins every couple of weeks, and then sticking those bins upstairs where-ever there is free space, and then they just sit there and the boys pull out the toys they want from them and leave the rest in a jumbled bin in the floor. The floorspace is getting filled up, and the boys are getting older. It was time.

I have been pecking at i, rather than sitting to it all at once. I sort the toys into Actively Played With Toys, Toys to Go to the Basement, and Baby Toys to Donate. I cleared Andy's closet of baby blankets and oddments so he can use it for his own things. The last of the Baby Stuff is being swept away.

When I was pregnant, my mom warned me that babies grow up, and they grow up fast. I knew it would be a blink of an eye. I had no idea how fast eyes can blink. I remind myself that Joey is actually growing up slower than most children, and it makes me want to hug moms everywhere, who have their children grow up faster than anyone can ever imagine.

My baby was reading my squirrel post yesterday, and he noticed my avatar icon. "Why you have your hand up there, Mom?" he laughed. I told him it was Uma. He didn't remember Oobi. It was his favorite show. So fast. So fast.

I took the old art down from his closet door. The closet door is coming off; Andy's room is quite small, and that little extra floor space will actually be a big improvement. I put the old drawings and pastings in a little box. There a cow, and a spider, and a sheet of dinosaur stickers that were rewards for training that he adored. He wants Star Wars posters now.

I put Joey's Toy Story toys in one bin in his room. I sorted out the Cars toys, but I am wondering if they go in the Basement pile or the Donate pile. Cars with eyes are apparently for little kids. What does Joey play with? Play for Joey is not usually like other kids. He likes wooden spoons, writing tablets, and sticks better than dolls or toys. But then, he and Andy played Toy Story all day yesterday, with his Woody and Buzz. Scripted pretend play is still pretend play. I leave the Cars stuff a little longer; Andy might still want to play with them, and having him go into Joey's room to get them may encourage him to engage Joey in the play. Good for both of them.

The Fisher Price bus? Donate. It's a wrench to put a bus in the donate box, as Joey loves buses. However, it is not Bus. It is a baby toy, a toddler toy, and it is still in decent shape. He hasn't played with it in ages. He's more into space stuff now. It is time to move on.

My babies just aren't babies anymore.

Happy Squirrel Appreciation Day!

Because we should always appreciate our small, furry friends.

*There are 365 species of squirrel. Maybe we should start a "Squirrel Species Appreciation Day" with a new species every day. It would make an awesome desk calendar.

*Once a female squirrel breeds with a male, she never breeds again with that male.

*Squirrels do not leave their nests at night.

*Squirrels sharpen their teeth by chewing on sticks.

*Squirrels laugh. They also use chirping sounds to indicate a wide range of emotion and alarm signals, in conjunction with tail movements. If a squirrel is chirping very fast and flicking their tail, it is laughing at you.

*When a squirrel finds a nut, they open it with their teeth, then rub it on their face. This applies a scent so they can find it later- even under a foot of snow.

*When a squirrel's nest becomes infested with fleas or other parasites, it will abandon it and build a new one.

*A squirrel's incisors grow 6 inches per year.

*Squirrels prefer to build their nursery nests in oak trees.

*The average life span for a wild squirrel is 3-5 years.

Happy Penguin Awareness Day!

Did you know:

*Penguins have been around for about 40 million years. The earliest penguins appeared in the Paleocene period in New Zealand. They appear in Antarctica in the Eocene.

*Penguins mate for life.

*Penguins can swim up to 25 miles per hour, though 15 miles per hour is the average.

*There are 17 or 18 different species of penguin in the world. There is debate about whether Little Blue and Fairy penguins are separate species.

*The average penguin spends 75% of its life in the water.

*Early explorers of the Antarctic mistook penguins for fish (and classified them as fish). Penguins are birds.

*Large, dense colonies of penguins are called rookeries. Penguins gather in rookeries to breed.

*There are no natural penguin populations in the northern hemisphere.

*Penguin eyes are made for seeing underwater. They work better under the water than they do in the air. This adaptation is likely due to the fact that penguins feed in the water, hunting fish and krill.

*Most wild penguins live 15-20 years.

Inclusion Attitude: Part of the Dream

"Inclusion is important because children with disabilities gain valuable social and academic skills by interacting with their non-disabled peers."

"It is important to include special education students in the regular education classroom, so they will have non-disabled role models."

"Inclusion helps children with disabilities, because they can interact with regular kids."

It's that little spark of abilism no one seems to notice. The language that hints at something deeper: a sort of slip, if you will. It is always to the advantage of the kids with disabilities to have inclusion programs. We forget there are also advantages to those "non-disabled peers."

A couple years ago now, we had a parent in one of Joey's classrooms complain that one of "those kids" was in their child's classroom. Special ed kids are seen as a burden, a drain on resources and attention for their "regular" and "normal" kid. It is an attitude that must be fought. Until everyone understands the advantage it is for everyone to have inclusion, it will remain a seething issue for the majority of families who do not have kids in special education, who do not understand what special education is or what it is for.

After all, what's in it for their kid?

I know why it is better for Joey to be around his non-disabled peers. Why is it good for those same peers to be around him?

They learn a lot about caring about others. Joey loves the world, and has genuine compassion for others, expressing that freely. If another kid gets hurt, Joey is right there to comfort them.

They learn about accepting differences. This is a vital social skill that often gets pushed aside, especially in middle school, when kids get that urge to be like everybody else. Teach them early. Teach them well. We are all unique, and that is a good thing.

They learn a lot about math. That's right. Remember academics? Joey even helps with academics!

I could go on, but the point is this: inclusion is about sharing strengths in order to meet challenges. Everyone has strengths to share. Everyone has challenges to meet. With inclusion, we all get those strengths, and learn to meet those challenges, often in ways no one expected. We strengthen the content of our characters.

Until everyone understands that, inclusion is under threat, because so many do not understand what inclusion is. They don't see how it is to their advantage, so they assume it is not. That assumption is backed up by media articles on inclusion, which stress the advantages of inclusion to people with disabilities, without noting the advantages to everyone. Inclusion isn't important because children with disabilities gain important social and academic skills. It is important because everyone gains important social and academic skills.

A Day Home

Joey was pretty sick yesterday. About 6am, he started throwing up- but since he hadn't eaten much, it was clear. He felt better enough to get dressed, but then I found him sprawled on the couch as Andy zipped about putting on shoes. No, that was not a child in condition to go to school. I kept him home. Shortly after Andy left, we had another bout of waxing, then the other end of the system became an issue. It was a good call.

We spent the morning watching Wow Wow Wubbzy on my bed, while I poked at a few things, but mostly snuggled him. Then he decided he wanted to move downstairs, so I set him up on the couch, and asked him what he wanted to see. He asked for Little Bear. We did a Little Bear marathon. I found this also interesting- he could watch anything he wanted, and instead of the high-power shows like Looney Tunes which have had his attention lately, he asked for a slow-paced, comforting show, most of the afternoon. I think my little buddy was trying to get some rest.

He was super-glad when Grandma arrived with soda and snuggled him on the couch- yes, a very snuggly boy. We got to sit with a fire in the fireplace, watching our Little Bear, letting the tummy rest and the boy rest... and the Momma rest. I did some picking up. I poked at the laundry. But otherwise, I spent the day snuggling my boy.

I only wish he wasn't sick.

Why Are Mental Health Services Important?

I am glad I am not a set of parents in Arizona today. I am glad I am not the Greens, who are suffering the unimaginable pain of losing their child. I am glad I am not the Loughners, who have likely been struggling to get their child the services he needs, and for whatever reason were unable to do so. There, but for the grace of God, go I.

Yes, we think about it. When Joey melts down and says violent things, we think about it. We could very easily lose him. He could be bullied to death (or worse). He could lose that line between speech and action and do something violent to himself or to others. As we scramble to get others to understand the need for service, the vital nature of those services, the potentially dangerous situations we face, we have these kinds of stories to terrify us into action.

That's not even counting in the autism factor. The autism factor just makes it that much harder to get our child help, because we can't just send him to any social worker with space on her schedule, we need someone who can work with an autistic child, understand his way of communicating and expressing his needs, his unique issues, on top of the angst. We need to find service providers who understand how autism amplifies the issues other children have with anxiety, depression, anger, frustration.

I had an appointment to see a psychiatrist in March, and we were going down the Charlottesville to see them. They cancelled. We haven't managed to get back on the schedule yet, as we sit on the waitlist for a client cancellation. We're not hopeful; it is just too hard to find someone to see these kids, the appointments are too precious. It is insanity.

So today I am thinking of the Greens and the Loughners, and sending them my thoughts and prayers with all my heart.

CNN again!

Our dreams of a school were featured in a CNN blog on the recent $380 million Megamillions jackpot thing.

Unfortunately, we didn't win. Maybe next time.

Life on the Short Bus

I just did my first 'unfriending' on Facebook. And it hurt. A lot.

I don't just 'friend' anybody. If I have allowed you to look at my life on Facebook, I have very good reason for doing so. However, sometimes relationships come to an impasse. Sometimes you have to let people go.

I got a very acrid message from a "friend" about some of my posts about the r-word and short bus jokes. I'll be straight up: not only do I dislike them, flinging about these words and "jokes" are very painful for me and for my family. You have the right to say them. That's Freedom of Speech. But I was always taught that with every right comes responsibility. You have the right to say anything you want- so take care when speaking. Use your right responsibly. You may have the right to drink, even to excess, but not to then drive a car. Someone could get hurt.

In recent testing, Joey passed the fourth grade end-of year tests for math. He's in the third grade. He can recite the birthdays of every family member, including ones he only sees a few times a year (and a couple he never sees at all). He reads dictionaries and encyclopedias for fun and comfort. So why does my son ride the special needs bus?

Well, because he has special needs. He has trouble with expressive language, so has difficulty telling us what happens to him during the day, and would have difficulty reporting problems he may have with peers. If he got upset, he might try to bolt, and the regular bus stop is around the corner and out of sight of the house, and no one is required to be at the stop to meet the children. In other words, he is on there for his safety.

Why would I feel the need to justify the safety needs of my own child? He's on that bus because it was decided he needed to be on that bus. He gets to school. He's smart as a whip and does good work when he's there. How he gets there should be nobody's business but ours. However, we've entered the moment where every year, a new variable pops up about his transportation: his social situation.

See, making fun of kids who ride the short bus is socially acceptable. Flinging around "retard" and "short bus" jokes is common, pervasive, even encouraged by adults. Joey cannot effectively defend himself from these types of jabs, but he feels them. He knows. Those words and jokes have been levied at him, and he's an easy target. And you know what? Even if my child embodied every single thing such jokes and jabs implied, they would be wrong. And you know why? Because my child would still be a fellow human being. Degrading fellow human beings for your own amusement is not only wrong, it's callous and heartless and cruel.

We teach Joey and Andy the importance of treating others the way they wish to be treated. it is a vital life lesson that so often falls by the wayside.

You can say anything you want. Having a right doesn't make it right.

What a year its been

In 2010, we went from being on the right path to being completely derailed, to trying find the tracks, to wondering if we were on a frozen lake like the Polar Express. I think right now, I'm still telling the engineers to turn left and right, but at least we can see the tracks again.

It is a reminder that you can work your butt off, and small things can make it all for naught. Differences in attitude make a difference. Proactive preparation can also make a big difference- between being able to participate in "regular" environments or being trapped in self-contained worlds.

We learned the value of child locks on car doors and the speed of Joey's legs when panicked. We discovered the value of fifteen minutes in the search for a missing child. Our world has been dominated by the fear of the bolt.

We also got to see the President. We went to the beach, the zoo, and even DinosaurLand. We didn't let fear bring us to a grinding halt.

We look forward to getting on track in 2011, and moving on to bigger and better. We hope you'll join us in our adventures!

A Little Bit of Clarity

I am starting to know what kind of moment (or even whole day) we are having by listening carefully to Joey's voice. When Joey was little, I often noted to his teachers that he had a huskiness to his voice, a sort of talking-through-cotton sound that other children his age didn't seem to have. I was, for the most part, laughed aside with the idea that that was just his voice. However, Andy does not have this thickness to his speech, despite all the speech issues he has. However, I notice it in many of the kids I meet with dyspraxia; the issues of motor control are coming into play when Joey speaks.

Now and again, and especially when he is doing well and having a really good day/moment, Joey's voice is clear as a bell. In fact, it can be hard to distinguish him from Andy at these moments, even though I know his voice is slightly lower in pitch. When Joey can speak clearly, his brain is moving in synch with his mouth. I also have noticed his language use improves in these moments, though his grammar often takes a slip. He can talk about his toys, or what he did that day, or what is going on in Poptropica, even over the phone.

When his voice thickens beyond the norm, it is a bad sign. Frustration mounts. His body is not in synch, his language use diminishes (though often his grammar improves...), and it is time for a break. Most likely, he is tired and/or hungry, or otherwise worn thin. It is not the time to press him.

So now my ears are primed, ever listening to the rises and falls in my Joey's day, searching for patterns that coincide with thick and clear. Just one more clue when the game is afoot.

Wordless Wednesday: Merry Christmas

When It Is OK To Believe

I have come across a very sad thing here in my little corner of the world: children who not only don't believe in Santa Claus, but tell others that he is dead. The parents of these children often are trying to move their children away from the consumerism they see in Santa Claus and towards a focus on Jesus in the holiday. See, these parents not only don't believe in Santa Claus, they don't even understand the point. They are themselves so caught up in the consumerism that they miss the real meaning of Santa Claus, and thus miss a wonderful way of turning their children to their spirituality and community in a way that children can readily grasp and believe.

If you believe in Santa Claus, you understand that St. Nicholas is about giving, not receiving.

You may remember that we're staunch Methodists (well, we believe in comfortable furniture and stuff, but there is no denying we're Methodist in a strain older than what I have seen in any of the Methodist churches I've tried around here, which seem very. very Baptist). We believe that God has given us many, many gifts: life, the world around us, friends and families and everything in wonderful Creation. He also gave us Salvation- that was a gift, and it is given, and it is up to us to appreciate it, be grateful for it, and remember to do our best with it. That idea of giving, of putting your best forth and giving to the world, spreading love and cheer and goodwill, that is what Christmas is for, celebrating God giving us this great Gift.

That is also what Santa Claus is trying to remind us to do. By giving without expecting any return, Santa gives us a model of being a giving person, a person who thinks of others and what they want, and tries to show love in ways others understand. It is a lesson that is often lost in translation as we succumb to the me-me-me of the adolescent age, and so many never seem to emerge from it.

Telling a child that Santa is dead is not only unfortunate, it dismisses the lesson he has to give us all, the very message of the joy of Christmas and of the Christ. It is the core of Christian belief, which is why St. Nicholas, patron saint of children everywhere, is so adored.

I believe in Santa Claus.

End of Semester

Sorry I am absent. I am tearing my hair out grading. Now school is called for snow. I'll be back when sanity resumes.

Ok, at least when I have a few more minutes to myself.

Our Adventure in President's Park

Yes, we did! We got tickets to the National Tree Lighting! And we had the most awesome seats- here we are watching the trains, and I can see our seats. Seriously. Totally awesome.

The boys liked the trains, but we didn't get to spend much time looking at them, because some official person threatened to "squish folks in" and take our seats from us if we weren't in them. At 3:30. According to the literature we had, we didn't have to be in our seats until 4:30. Besides, we weren't the only folks wandering around, or attempting to. But whatever. Mom waved us down in time for us to keep our seats.

Our adventure included a guest appearance by Stimey! So not only are we awesome enough to get tickets to the Christmas Tree Lighting, we are cool enough for Stimey to hang out with us. We rock.

So we took some photos of ourselves in front of the unlit tree while the daylight held out, and before we had to race back to our seats to keep some official person from letting someone else sit in them.

Joey and Andy were having a wonderful time, too. They were wonderfully good. Seriously. We pulled out a couple of our tricks from our bag, but they did the trick and kept everybody calm and having fun. I wish we had more time to look at the trains, though. They were digging them. If it warms up before Christmas, we might go back up just to see them. Or we'll wait until next year, if it is warmer.

Because you know what? It was Cold. Seriously. Cold. I was glad I thought to bring the tree hats. Not only did they get us on TV (woo-hoo!) but they are made of polar fleece, so they are nice and warm. And I thought to bring extra hats, extra gloves, extra scarves, and several blankets. All of which came in handy. Did I mention it was cold?

Yes, that is the beautiful and fabulous Stimey, and yes, our seats really are that close to the tree. It totally rocked.

We actually got to see the motorcade form in front of the White House, then pull away to come to the event (and joke about how he should have just walked, or used a Segway). I thought I took some film of it, but apparently, I didn't. :(

Did I mention I have a new camera?

So we waited for the dark to settle, the temperatures to plummet, and the president to show up. They started playing music for us about 4:30. The president showed up around 5. All in all, we did quite well.

I think they ought to have more ornaments on the tree, though. But that's just me. If you've ever seen my Christmas tree, you know I am not being facetious.



WE GOT TO SEE THE PRESIDENT!!!


When one sees a president, one is required to cheer loudly and take lots of pictures, and hope the zoom on the new camera works. I think it did pretty well. The film I took looks amazing, better than the photos, even.

They lit the tree around 5:15, which made us very happy, because we didn't feel obligated to stay. Did I mention it was cold?

And it was pretty awesome, too. It just comes right on, and we were suddenly aglow! What was also cool was the whole First Family lights it, including the First Grandma. And since we were also there with Grandma, we definitely appreciated that.

Joey did fabulously. We did have some games for him- a little handheld and my iPod (he loved tic-tac-toe and loves Angry Birds). He didn't even need his earphones.

Considering he sat in a car for an hour and a half, then in a line for half and hour, then in a seat for almost two hours (after walking calmly through a metal detector!), and then into a show that didn't really interest him until Santa appeared, I think he ought to be sainted for his behavior. He did awesome.

The First Lady read The Night Before Christmas, and that was fun for the guys. The little girls are adorable. I believe the other kids are from military families.

And did I mention Santa showed up?

That's when the guys really got into the whole tree-lighting thing. See the President? Oh, OK. Watch a 42-foot tree light up? Nice. Hey, look, there's Santa... WOWIE KAZOWIE, IT'S SANTA!!!!

This is Andy watching Santa. He also did great. They were both so patient and so, so, so good.

Before the show started, Andy discovered it was warm under the blanket, so he was playing under it and under the chairs like a little tent. He was adorable.

We watched B. B. King perform, then decided the boys were tired, cold, and hungry. And we were tired and cold. Did I mention it was cold?

So we bid farewell to our beautiful and adorable and wonderful Stimey, who I didn't get to really talk to much, and made our way to the exit. Only they had closed all but one of the exits, and the open one was not the one we entered through, so it took a long time for poor JoeyAndyDad to find us and pick us up. (He drove us up so we could get really close, to help out my mom). That was a bit of an adventure unto itself. But he did find us eventually, and we did thaw, and we'll see how the boys are feeling in the morning.

Overall, we had a wonderful time. How many times do you get to see the President and the lighting of the National Christmas Tree? And we got to see Stimey on top of that! Woo-hoo!

Merry Christmas!

Watch us on TV!

Wordless Wednesday: The Holidays are coming!

Preparing: The National Christmas Tree Lighting

Yes, I got tickets! Woo-hoo! We are going to go see President Obama! I am SO excited!

Of course, it's going to be the coldest December in years. Oh, and I already think D.C. is the coldest place on earth. And Security opens at 3, we have to be seated by 4:30, and the show doesn't start until 5. And I have an autistic child.

How does one get Joey through all that cold and waiting? What if he is overwhelmed by the concert, the crowd, the waiting?

So I am packing my special Success Kit:

A set of earphones and music player, loaded with Joey's favorite songs.
A Sensory Kit: fidget toys of various textures and chewy food items such as gummi bears and gum.
Scarf, Hat, Gloves spares. Extra socks.
iTouch with Angry Birds and Funny Bunny loaded.
Several chopsticks to use as air-writing sticks.


Anybody else have suggestions for the kit?

I hope they sell hot chocolate once we're there.

Echoes

I sit in a room full of parents, their children with various issues, various diagnoses, varying degrees of functionality and challenge, in a place where improving functionality and overcoming challenge is the goal. The clamor of chatter bounces about the room, parents trying hard to connect with other parents, sharing what works, what doesn't, what they see and how they feel. Certain refrains reach my ears.

"Once I took the gluten out, everything was better. He even looks at me now!"
"Oh, no, my child isn't autistic. He has PDD-NOS. It's a developmental delay."
"All those chemicals in vaccines! She's recovering from measles now, it wasn't so bad. How long? Oh, it's been about... eight weeks now. The school is starting to get fussy, but I don't want her to over-exert herself in PE..."
"The vitamins have been really helping! You should try it."
"Well, he focuses well enough when it's something that he likes. He'll watch that train in the grocery store for hours if I let him. He just doesn't like his schoolwork. What kid does?"
"The tae-quan-do has been amazing. He is so respectful now!"
"They want to teach her to sign, but if she signs, she won't speak, and who understands sign language in the real world?"
"I had to pull her out of school. It just wasn't working. Nobody wanted to really help, they just wanted to stick her in with a bunch of stupid special ed kids and let her rot."
"They want me to put him on meds, but I want him to learn to cope without them!"


I know these children. I have seen them once a week, some of them for six years, and started off seeing them two or three times in a week. I have seen them grow, and change, and suffer, and triumph. I have seen the hard work they do. The hard work their parents and grandparents and caregivers do. The hard work their siblings do.

They do what works for their families. And whether you agree or not (or I agree or not) with the comments I was hearing, or support their approaches or not, or wonder more about these children and wonder why these comments might have stood out in my head from the other jabber in the room... these are hard-working people, doing the best they can in a hard place.

I remember when I first found myself in this world of special needs and disabled children. I was shocked to find how I started off in a place of such utter ignorance. I'm an educated person. I had no idea. To find I had to come to terms with the needs of my child and the changes in my own life, that wasn't easy, and it wasn't quick. To actually come to terms, that wasn't easy or quick, either. We did try things, we spent hours researching things we had heard, theories handed to us. We went through the agonies of self-doubt, self-recrimination, the ugly side of discovering life isn't going to be as you expected it, as everyone assured you it would no doubt be- provided you did everything right, having it go this way, the wrong way, was a slim and distant possibility. The attitudes towards special needs kids and their families- the ignorance and venom of people who have no idea what it is all about, what it is like, can be overwhelming. Add in the venom of people who insist you should believe what they believe and do what they do within the special needs world itself, and it can be crushing.

Often I find people in these waiting rooms who are just reaching those terms. They go on about things they've tried. When I disagree with their approach, I often smile and nod and say, "how interesting, I'm glad that is working for you guys..." and then go on to note the latest triumphs the child has achieved, leaving why I think that challenge was overcome deliberately vague. I'm not there to add to the crushing weight of constant judgment.

I might note what worked for us. And some of those other parents smile and nod and say, "how interesting. I'm glad that is working for you guys..."

And that's OK. We'll all muddle through. It's good to listen. Sometimes there are new ideas to try, bouncing about a room of jabber.

Awareness: Child Abuse

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