Not Alone

X-man got in the car yesterday after playing at the park. I watched him for 30 minutes wander between two groups of children, trying to find a place to fit in. It took him most of the first semester to learn to like playing tag, so if there's a game, he wants in on it. I love tag -- because I get to watch him run. He does this interesting thing with his arms. Instead of making fists, like I see so many runners do on the road, he extends his fingers out, but keeps them all together. You see sprinters do this or hurdlers. But he doesn't bend his head down for speed. Instead, he stays upright, and kind of swishes his hands in front of him front and back rather than using his whole arms.

Anyway, the version of tag going on was really a first grader chasing a fourth grader and a group swirling around them trying to intervene to help the fourth grader escape. But since he was a 10 year old escaping a 7 year old, there really wasn't much to do in the intervention process besides run along side. X-man, trying to figure out why the other kids thought this was fun, kept interjecting. "I want to play. What are we playing? How do we play?"

One of the fourth graders finds X-man annoying because he talks so much. But no one is stopping to explain to him the game, so he just keeps chatting. He disappears checking on other kids in the playground to see if they're doing anything he's interested in. But he keeps going back to that group, because he's 7 -- and he has Big-Boy-itis, pretty badly (wants to play with the older kids).

He got mad when I said it was time to leave. But then I pointed out that three of the other families were also leaving and he relented and avoided a tantrum.

Then we get to the car and he says, "Mom, I'm not going to get to go to the Kindness Café on Thursday."

The Kindness Café is a lunch that is served to children in his class if they accrue enough "kindness" tallies. In hopes of inspiring the children to be nicer to each other, it was an award system created at the beginning of April by his teacher. It's a fundamentally good idea, but difficult for X-man. Because what he sometimes labels as kindness -- doesn't come off as such. Shouting at people to not run in the hall so that they don't get in trouble, doesn't feel kind to the person being shouted at. They don't understand that his intention is for them to avoid getting in trouble. And indeed, X-man also thinks that just by following the pre-set rules he is being kind, when really, he's just doing what he's supposed to do.

His main issue though comes in how the "kindness" tallies are received. Your teacher can give them to you, but so can other students. And in his skilled observation, X-man has noticed that people have friends giving them tallies at the end of the day, but he says he doesn't have really close friends. He has one, who he loves, but she's a girl, so according to X-man she only speaks up for the other girls. He seemed slightly frustrated with that, but in the end he forgives her because in truth, the boys really only give kindness tallies to other boys. His -- he says -- have all come from his teacher, who recognizes that he's trying in his own way, but that his kindness really doesn't translate to the other children.

So we had a big conversation about why he doesn't belong. He listed three cliques at school and says he sometimes plays with two of the three. The third, he said, has kids who generally spend a lot of time getting in arguments and going to the principal's office, and he understands that as a bad thing, so he doesn't want to get mixed up in it, but one on one those kids are fine.

But he asks me why he doesn't really have a place to fit in. Is it because no one likes him? I told him that I think that sometimes people have a hard time seeing the world the way he does. And that often times, his tone is rougher than he realizes. But that in the good column, if he isn't a core member of any of those groups, that means he's pretty open minded because he plays with everyone.

He smiles a bit. Then he asks, "Why is it people have playdates at our house, but never invite us to theirs?"

I don't have a real answer for this. Not one I can put my finger on. All I know is that in all of my reading with kids who exhibit social disorders, is that this is a common situation. When neurotypical kids develop in kindergarten and start to understand that your child isn't typical, they stop inviting them over. The birthday parties invites for kids your child has known since he was born stop, too. And this isn't just on the kid front, it's on the parent front, too. It doesn't make it an easy situation for anyone.

I've been reading the book, "Easy to Love, Hard to Raise: Real Parents, Challenging Kids, True Stories" by Kay Marner and Adrienne Ehlert Bashista. And it's been kind of nice to read these stories about quirky kids, regardless of their labels and the insane lives their parents lead just trying to get through each day, let alone wondering if their children will be able to function at 23 without parents (usually Mom) there to translate their unique ways to the outside world and vice versa. (For the record, most of them seem to function just fine later in life.)

Without a doubt, speaking X-man has become my key role in life these days.

In the opening sections of the book, which is a collection of essays written by parents, one of the editors brings up the overall idea of what these parents go through. I'd like to share it...

"Like so many girls and young women, Eve has a fantasy of parenthood, formed during childhood play, and reinforced through years of romantic musings. Finally, it's her turn to live the fantasy. Her son, Eli, is born (or adopted). Eve's a mother!

Before long Eve is confused. Although she loves him, the experience of parenting this child is nothing like she thought it would be...He won't follow directions, has violent tantrums, sometimes for little or no apparent reason. He never wants to slow down enough to eat. He doesn't share or take turns at playgroup. Eve would love to connect with other mothers there, but she is unable to relax and talk with them, because she's constantly chasing, correcting, and redirecting Eli. Neither of them is getting anything positive out of it. They quit going.

Eve had expected standard discipline tactics to work with Eli, but they just don't. She's frustrated and angry, with Eli and herself. She reads parenting book after parenting book, and tries strategy after strategy. Nothing works. And when they don't, Eve blames herself. Eve starts to question her ability to parent.

The idea that Eve is at fault is reinforced by others. Family members, friends, the parents of her child's peers, his teachers -- even strangers in the grocery store -- are critical of her parenting abilities. Eve is far from a lazy parent; in fact, she has no choice but to work harder than most, but her efforts aren't reflected in her child's behavior for others to see. Some people express their criticism of Eve outright. Others show their disapproval through their expressions, their reactions.

Eve often feels shame in situations where other adults can observe her with Eli, and she starts to withdraw from her former supports. She begins to feel isolated...

Something about this child is different. Something is wrong.

The first inkling cements into valid concern around the time Eli starts preschool, and then kindergarten, when he is expected to conform to more rules. According to his teachers, Eli can't sit still on his carpet square, keep his hands and feet to himself, or color inside the lines...

Eve begins the search for someone to diagnose Eli's problems, unaware that this is just the beginning...

Eli's peers seem to mature more quickly. They stop inviting him to birthday parties. He joins Scouts, but quits because he feels excluded. No one plays with him at recess. Sometimes he's teased or bullied. Eve aches for him. Her pain is as palpable as Eli's own.

Eve's isolation grows in tandem with her child's. Since Eli isn't invited to sleepovers, doesn't excel at team sports, and isn't part of various other groups, Eve's not part of the mom cliques that surround these activities...

Finally, Eli's problems reach crisis proportions. He sees himself as reflected by those around him -- bad, unlikable, stupid. Eve can no longer sit back and watch this happen.. In addition to ADHD, Eli has a mood disorder (or OCD, Tourette's syndrome, autism an eating disorder...)...

By now, Eve is no longer trying to "fix" Eli's problems, to "cure" his condition. Instead, she focuses on finding coping skills and tools to help him... Eve also opens up to a few others about some of Eli's symptoms, and how he deals with them. When there's no shame, there's no secret. When there's no secret, there's no shame."

It's just a creative sample at the beginning of the book, but many of the essay share bits and pieces of what I have found parenthood to be. Most of all, though, over the past two years, I've found it very isolating. I've spent a lot of time trying to figure out what it is I do or don't do that makes it incredibly hard for me to be close to people. I think people just get sick of hearing about what I'm fixated on at that particular moment. But that's what I'm dealing with. That's what is affecting me most, emotionally. And it's hard not to talk about it. But when there's no one to talk about it with, you learn to be quiet.

At least until someone gives your kid this sideways look at the park. And you realize the "few" people you talk about your son with are also parents of "quirky" kids.

Suddenly, you're not alone. But you're definitely on an island. Others are either on islands within shouting distance or they're sailing by on boats of their own trying to shout their stories as their own kiddos keep them on their toes.

This is the part about being a parent that is so hard. Advocating for him, so that he has someone, when you, as a parent, often feel like you don't have anyone at all. So I hope, that as he gets older, he finds someone else, quirky like him, that he can spend his life with.

Cause I gotta tell you, I am thankful every day, that MacTroll is as wacky as I am, and that we're over our heads in this together.

A Lovely Letter...

Yesterday, we got a letter from Unit 4 telling us that X-man has been accepted to the gifted program. He did very well on all the tests they gave them.

Today, we sent the letter back declining. We were asked to say why, so I told them about our potential move to California, the fact that I don't like self-contained gifted programs and that we were very happy at Carrie Busey and didn't want to move.

When I went to volunteer at the library at the school this afternoon, I saw the principal. His first words were, "Did you check your mail?"

We were both very proud of X-man. So he's gifted and socially awkward. And in Mr. Scott's words, he just has different strengths than other kids. I wish it was that easy with other people. People recognize him as being different and they make comments or offer suggestions, and it's infuriating to me. Mostly because it's usually from a stranger...

Lately, I've been feeling boxed into the idea that we have to have some sort of diagnosis for him. That for some reason it will help him. But today, I'm bouncing back the other way. I guess we're still thinking about it.

As for the house... we are now on sale.

Sweetness of X

And no, I don't mean the drug. :-)

Today, X-man, MacTroll and I sat down with his new "Jedi Quest" assignments. He went from Padawan to a member of the Jedi Council in about 8 weeks. It was a good way to reinforce our talks about what are "expected behaviors" versus "unexpected behaviors."

So now we have a list of quests for him to go on. Tonight, he was coming up for rewards for each of the 8 levels. He came up with laser Tag with my dad, balloon jousting with three friends, having more books read to me at bedtime (but keeping my bedtime), playing tag with Mommy and Daddy, got to the Y to swim with one friend, and then he said he needed time to think of more. But he came back and said, "For the last one, I really want it to be unlimited Wii time after my homework's done but before bed for a week."

I'm kind of excited about most of his choices. He's never asked us to buy him anything, just to do things where we spend time with one another or spend time with friends.

I kind of love that about him.

Learning from X-man

We joined the Y in April of 2012. I needed a pool with more than lunchtime, early morning and late night hours -- particularly one with childcare -- at the height of my restriction from using my feet for more than walking so that my peroneal tendons wouldn't rupture.

One day, X-man and I went to the pool where he was told that in order to go down the water slide, he would need to pass a swim test. He figured it would be like the one at the Aquatic Center in Urbana, where he had to be able to show he could swim across the small pool that the little kid slide dumps into. It's maybe 15' across.

But it wasn't. The Y swim test was 10 seconds of treading and the child must be able to swim about 25 yards without touching the side or bottom.

X-man tried. And he failed. And then he fell apart. He's in the middle of his third set of private swim lessons at the Y. Before that he took two sessions at CIRCE and before that he had group lessons at the Aquatic Center and at Sholem. And he always seems to stay in the same place at a level 2. Not because he has any fear of the water, but because swimming requires some sort of relaxation. You have to be able to be still to float. X-man has a hard time being still.

I'd ask him periodically and his instructor at the Y would ask him if he'd like to retake the swim test for the water slide. He'd always decline. "If I want to go down a slide, I'll just go to Urbana or Sholem."

But at a Y Night last night, they asked the kids there if they'd like to take the test. And he said, "Yes."

So when I went to pick him up, he had an orange rubber bracelet in his hands. I was so very proud of him. He swam the 25 yards and he did the 10 second tread. He told me that he was the slowest out of all the swimmers who took the test. I told him it didn't matter.  It was pretty awesome.

On that same note, I had it in my brain that I was going to go to the Armory today and try running after I tried yesterday, and had a pants malfunction... (too big at the waist means almost exposing your backside to the other walkers/runners). So after my Body Pump class, I came home. But now, I'm running around doing housework and avoiding.

I'm scared. I don't want it to hurt. I'm scared of how my body is going to feel when I start. But I know I need to break down and do it. At the same time, I'd like to take a lesson learned from X-man. You'll do it -- when you're ready -- and not a moment sooner.

Until then, I'm organizing like mad.

The "Too Much" Problem

Last Friday, X-man had a hard OT appointment. He couldn't be motivated to do anything. He got up and left the table. He whined. He bitched. He was an all over hot mess. I know that our OT has worked with many, many kids with different learning disabilities and developmental disabilities, so she's worked with all kinds of kids. But my kid was stubborn and rude and really, it was all I could do not to blow up at him. She was calm and encouraging but firm. But it was frustrating for everyone.

After she left, I was ready to take everything in the world away from him for being so awful. I sent him to his room so that I could sit down and think about how to get through to him that we all understand that fine motor skills are hard for him. But being an obstinate jackass just makes things worse.

MacTroll and I called him down and we talked to him about his behavior. Of course, there were lots of promises not to be disrespectful and about how sorry he was and about how he just got so angry about having to constantly be reminded to start his letters from the top and to bump lines and that he hates that  he never seems to naturally do it right.

And then instead of hearing that we were taking electronics away, he heard me say, "Well, now you get to do more fine motor skills every day."

This was not what he had thought was going to happen. If it's too hard to sit in a chair after school and do one more hour of pretty fun stuff (she has games and sensory items and made-for-X-man writing sheets) to work on something he needs help with, then apparently, we need to do more, so that it comes easier to him when he's doing it with her on Fridays.

We're on day 3 of that plan, and so far it's going okay. MacTroll and I made a list of two weeks of fine motor activities for him. And then, depending what kind of homework he's doing, we grab something off the list that is different.

For example, yesterday he came home and had to cut triangles for homework and do some math facts with them. Then he had to write his spelling words. So it would have been too much to give him more writing or cutting to do. So instead, I pulled out a 211 piece Star Wars puzzle and sat with him and talked Star Wars with him. This was more like playing with Mom than doing fine motor skills (Ms. K has her own Star Wars puzzle that she brought for him to play with once).

Today, we'll do his spelling words using Bananagram letter pieces, he'll write his math homework and then we're going to cut out pictures in magazines for a collage project. I bought 7 10x10" canvases for us to use. He's got stacks of children's magazines, so I thought we'd collage a bit to take art to the new house whenever we move. And then we could recycle the rest of the magazines.

There's a fine line that we're walking here about how to get him the services he needs without overwhelming him and making him happy. At the same time, I'm hoping that he's understanding that we're not doing all of this to torture him, but how important being able to do things like twist open a cap on a water bottle (without using your teeth) and tie your shoes and those kinds of things are. I think he's afraid he'll never be able to do them. And sometimes, in our rush to get from place to place, he hands me the bottle and uses "Please" and I instantly do it for him. It's easier. It doesn't start any fights or whining. But then on the other hand, it helps continue a problem.

Sometimes you just have to pick your battles.

Celebrations

I have to admit that we sat around on Saturday like three lazy-boned people. It was great. The sun was shining through my bedroom window and MacTroll and I snoozed pretty much on and off the whole day with a variety of fuzzy animals. X-man was busy playing by himself for a while, and then MacTroll went and played the Wii U with him. In the afternoon his friends from down the street came over and played for a couple of hours, too.

Today, was a bit different. It was miserable outside. We were still kind of lazy (in bed until 9:30 a.m.) but then we watched "Harry Potter and the Sorcerer's Stone." We finished the book a couple of weeks ago, and X-man wanted to see the movie. We did have to fast-forward through the end fight, but other than that, he did pretty well. What was great was that throughout the movie, he was pointing out things that were different from the book. It was amazing not only how much he comprehends, but how much he can recall from finishing the books two weeks ago.

He also started his private swim lessons with Ms. Ellen at the Y again. He finished them last July, and due to my surgery, wasn't able to start them up again. So, he had six, 30-minute sessions. Today's were on Sunday but the next five will be on Monday evenings at 6 p.m. For the first time ever, though, he was able to swim from the deep end of the lap lanes in the family pool to the shallow end. It was 25 yards. It was all face-in-the-water doggy paddle. But it worked. Ms. Ellen was impressed, because all last summer he was scared to go too far. He was thinking about it too much.

While he was at his lesson, I took roughly 14 minutes and went up to the track and walked/ran a full mile. It's the first running I have done since March 2012. It was a big deal. It felt weird, but there was no pain. Afterward, when I dropped X-man off at Skateland to go play laser tag with MacTroll at 2:50 p.m., I swung by Body N Sole and picked up "The Orb." As I ran, my calf was tight. It worked, but I really had to concentrate to push off using my toes. I seem to push off on the lateral (or outer side) of my foot. This means I have a tendency to supinate. It's something I get to talk about with my doctor when I see him on Feb. 4 for my final "post-surgical" appointment.

It's possible he may want to make me custom orthotics, so that I don't lean out on the outside of my foot, which is called supination. It's easy to feel, as I'm running that I lean on my peroneals, and I don't want to risk another tear. Since 90 percent of runners pronate versus supinate... I often wonder if it would drive a podiatrist mad to try and make inserts that actually perpetuate pronation in order to prevent supination and work up muscles in a different part of the leg. I guess I'll find out!

But I did the mile. I didn't have to walk in between (i.e. I felt I could run longer and wasn't winded when the time was over. I was advised by my PT to try it out first and to go slow, and I'm a very compliant patient. I'm hoping that I'll get to do it again on Tuesday.

The only other thing we did this weekend was play an 8-hour game of Monopoly. We ended up calling it a three-way tie because it went on for so long. But we noticed that X-man was totally adding up the three die (we use the speed dice in the championship game) and adding and subtracting the money really well... into the hundreds.

I hope everyone had a restful and fun weekend, too!

Raising a Jedi

X-man's therapist, April Keaton, devised a new reward system for him. He's currently working his way from being a Padawan to becoming part of the Jedi Counsel. We picked some of our key executive function issues like "Behaving during specials" (meaning Occupational Therapy, Behavioral Therapy and Mathman) and "Not whining, complaining or generally being rude or grumpy in the morning" along with four other behavioral goals on his list. And he's advancing 1-2 levels a week.

The fun part is, he likes it so much, that he's actually inserted his own "Clone Wars: Jedi General" level, so he can extend the chart longer.

At the end of each level he earns something special. At the beginning of the training Jedi Master MacTroll and I sat down with him to ask him what he thought good rewards were. He picked things like: Make my own lightsaber out of a swimming pool noodle, play laser tag, extra Wii U time, go to the Children's Museum in Normal, etc. We were supposed to play laser tag in Dallas, but that didn't work out timewise, so MacTroll is going to take him this weekend, while I pick up the swimming noodle and some duct tape.

Either way, outside of two outbursts of frustration with technology on Wednesday, we haven't had an uncontrollable tantrum since he became a Padawan. Now at the Master Jedi level. He's doing GREAT!

504 Update

Yesterday, MacTroll and I met with X-man's "team" at Carrie Busey. The team is made up of various teachers and administrators who have various specialities and can do observations of children to see if they need any special interventions/accommodations.

When we last met, we talked about X-man's emotional issues. He gets stressed out very easily and could only have successful academic interactions with one other student in his class. He had difficulties making his letters. He had spatial awareness challenges sitting in a space on the carpet or standing in line going to specials (music, art, etc.). He was fidgeting and constantly pulling at his socks or putting things in his mouth.

So we put our heads together and came up with some things to try. His teachers followed them and then reported back on his growth.

The awesome news was that most of the feedback were celebrations. He's not chewing on as many things (although he still has no fingernails). His OT is helping his handwriting and he's making giant improvements. He has an emotional thermometer where he records how he's feeling throughout the day that has made a giant difference in letting him know when he's getting aggravated and needing some chill out time. He also meets with a social thinking group that utilizes the Zones of Regulation to help children become more aware of their emotions and to regulate them before they get to a breaking point.

His one challenge remains special awareness. He walks either at the front or the back of the line to be the most successful, but he seems to have trouble sitting up during carpet time. He has a special stool to sit in, so he can swivel around and keep moving without the danger of leaning back and tipping his chair.

What this means is that since we've seen improvements because of the accommodations, he has a 504 plan. If he hadn't been improving, we would have to take another six weeks to do a full case study and work toward an Individual Education Plan (IEP).

He takes his 504 with him to California when we move. And we'll have to sit down with the new principal and talk to them about how they operate and where they think the best place will be for X-man.

The administration and teachers at Carrie Busey have been extraordinary. They even told us to feel free to have his new school call if they want any additional information on the plan or on X-man in the school.

Restrictions

My child has always been a kid who would rather run around outside pretending to put out fires on a playground or to play spy around the neighborhood than sit inside. He has always reserved his indoor play to his precious Lego pretend play time or to work with playdough or to do games on his iPad.  Until the Lego Wii games came into our house...

We received our dud of a Wii U back in the mail the other day. It is now all set up and playable. We only have one new game that's Wii U specific. Tanks! Tanks! Tanks! Basically, you go around saving the city by shooting down mechanical monsters in your tank. You can work as a team, or you can go into a training ground and fight against one another (again, you can do it by yourself with the computer or in teams).

And on Saturday, I realized while I was washing walls and marking them with painter's tape, that X-man was spending too much time this vacation in front of a screen. What's the difference between the Wii and his iPad. Well, honestly, when he plays the iPad he often plays educational games. It's hard to argue when a kid spends 45 minutes doing a Ms. Frizzle Magic School Bus book or when he's working on spelling words in a spelling game or when he's fitting tangrams into a design in a math game.

The video game situation was becoming obsessive, so I imposed time restrictions. At first he was really upset. But today, he is actually planning out his time. He ran down the street to see if his friend could come over and play. He had to go get a haircut first, but when he was done, he'd be down. X-man is excited to have him come over and play the Wii U, so he's saving all of his Wii U time for when the friend is here.

In addition, he's excited about giving his Wii to Awesome. Once we got all the files from the other games transferred over, he felt it was safe to separate with the old console. So we'll be getting that ready, too.

I can't really say that the obsession is any different than when my parents first got us an Atari when I was six. I'm pretty sure I spent hours after hours playing Ms. Pac-Man, River Raid, Frogger and Centipede. None of that was educational, either. That's what our Commodore 64 was for.

:-) I totally just dated myself. And that's okay!

"Caroling is Overwhelming"

Last night, the first graders at Carrie Busey Elementary School had a holiday concert, where they sang carols. They asked us to be there by 5:30 p.m. So we were on time, but I had a feeling getting there 30 minutes before the concert began was going to be a problem. X-man was amped and ready to go the minute he went in the doors. But there was nothing for the kids do until the concert started at 6 p.m., and since we were in the gym, they felt like running. So a slew of kids started a game of tag. He stopped twice to hug both of his first grade teachers. 

About 5:50 p.m. some kids started getting lined up on the riser. X-man figured no adult had told him to stop playing, so he kept running. 

The next thing we knew, he was sitting on the ground between the two audience areas crying. This is not unusual for events like this. They're really not built to be successful for children with social anxiety issues. I guess one of his friends said something about how it was time for him to stop running and to sit down. X-man inferred that what he was doing was bad. So he cried. He doesn't want to be bad. He was having fun. How can having fun with his friends make him bad?

He crawled up in my lap, but it wasn't making him feel better. I noticed Awesome's Mom had moved from her folding chair seat to the wall on the far side of the gym. Awesome wasn't sure if he wanted to sing or not. So, I headed over there with X-man. The music teacher starting singing songs with some musical friends, and X-man got upset that they'd have to wait even longer to go up there. He started crying again. "Why are they singing at our concert? Why do we have to wait more? I'm so tired." 

X-man told me he was suddenly scared to go up there. He was afraid of all the cameras. What if he got nervous and started to cry again and all the cameras took pictures of him crying? Then he noticed that the smartboard with the lyrics didn't have the lyrics on them like it was supposed to, and he cried about that. The principal went to see if he could fix that for him (because like most people, if there's something that can be done, he's the kind of guy that will totally "make it so.") 

He missed two songs. "I practiced so hard, Mommy. I want to sing those songs." He started to cry again. I told him that we could go home or he could show me what he practiced and sing in my lap or he could give standing up there a try for at least one song. He wasn't sure. He tried to take me with him. But then changed his mind. That's when one of his teachers, Mrs. Cabutti, came over and backed me up. He hugged me and I walked him to the edge of the audience. Then he ran up there and waved me back to the wall.

Like a trooper, he sang the whole concert staring at the lyric board reading along. If it got off track, he'd try to look up to the words on the screen projected on the wall for the audience to sing along. He put up his hand a time or two to block out some of the people with their cameras out to help him not be so afraid. You could tell he was nervous, but he was rallying. 

And then something unexpected happened. A first grader's little brother climbed up on the risers next to X-man. X-man thought this was pretty adorable. He likes the unexpected. He kept his eye on him and tried to help him out. He figured he just wanted to sing, too. He even picked him up once, wondering if he could return him to his mother or if it was okay for him to stay. :-) 

Besides crying, the other way I know X-man is working on emotions in his brain is that he chews on everything. His sleeves were in his mouth most of the night. He seeks sensory feedback when he's anxious, it's also when he has most of his sensory sensitivities (shoes or socks are uncomfortable, itchy underwear, etc.)

But at the end of singing, "All I Want for Christmas Are My Two Front Teeth," He turned and smiled right at me (MacTroll took the photos). It was awesome. I applauded very loudly at the end of each song. I was so proud of him for overcoming his fears and getting up there, and Mrs. Cabutti was, too. 

Feeling the Need for Speed

Today, I walked Lily for a long time >45 minutes. My foot was great. It was a little tender the last five minutes, but I have basically returned to where I was last week at this time before had my moment of stupid on Sunday and injured it.

Tomorrow, I hope to finally have my re-eval at physical therapy. But I have to admit, while I was out with Lily this morning, there were times when I could picture myself running rather than walking. Tonight I walked over to the neighbors to pick up some wrapping paper that I'd ordered from one of the kids who goes to Barkstall. I felt like running down the two houses. It felt like a night to run. Two years ago, I totally would have been out there in it wearing my reflective sash, zooming around Prairie Fields and getting a good look at all the Christmas lights that only a neighborhood within 1/4 mile of a Wal-mart could produce.

I miss coming back somehow covered in sweat but not at all warm.

I hate the extra fat around my middle and in my thighs. I'm scared to get on the scale. I know that I'm about to give up dairy in the new year due to my lactose intolerance. I know that I'm pretty much (outside of eating eggs and honey) about to go vegan.

"Nearly vegan" is what it is called in the book "Becoming Vegan."

I'm not entirely happy about it. But my body is also obviously, not happy about anything dairy that goes into my body. So, I don't have much of a choice.

I got on a recumbent bike and was able to peddle it for an hour the other day. I couldn't do that last spring. It hurt too much. Now there is no pain. So that's something. I think it'll be a long time before I'm able to get dressed up and put on nice shoes.

X-man had a breakthrough this week, which is nice. We're still back and forth between going in for an evaluation here and waiting until we get to Silicon Valley (i.e. Land of everyone is likely to be on the spectrum). We got a letter from Unit 4 the other day about some test he took as a precursor to being invited to test for the Unit 4 gifted program. His results were very good. He wanted me to explain to him the concept of the bell curve. He was worried he was supposed to be in the middle and that he was dumb and missed it. When I explained that he was on the advanced size of the bell curve he got excited. And I have to admit that I got excited seeing him excited.  But it gave him a dose of self-confidence, especially after a day where he'd gotten bullied on the playground. The kids have a nickname for him -- "Absent." X-man explained that he said it's because they think he's stupid in the head. And clearly, according to the test results, he's not.

At Mathman, X-man was working on graphing all the possible addition problems he could make to equal six. When he got through them, he asked if he could use 7 + -1. Mr. Cohen said, "Yes!" So they started working together with negative numbers.

In reading, he's advanced from a level 6 reader to level 12-13. That's good progress. His teacher says they want him to be about a level 16 to be at grade level for second grade. So we're working on it. My worry is that he doesn't perform as well in the school environment as he does at home.

Today, after school, we dropped our neighbor off at home to his grandmother and then we went to the Cookies at the Clearinghouse library. It's where I've gotten most of my materials regarding the Autism Spectrum, Gifted with learning disabilities, emotional intensities, etc. My friend LL is the librarian there. X-man had four cookies, won a door prize (who doesn't love a coffee mug with a beach ball and angry bird bandaids?) and got to see his friend Awesome there. X-man knows where the picture books are, so he brought a couple over for me to read. Then we went to and enjoyed the pottery painting place in town. We ran into neighbors. X-man painted a snoopy on his dog house. I painted an ice cream bowl and spoon for X-man to use at home.

When we got home, he ran down the street to meet his friends' new pet -- a mouse. He said it has three names. One in Russian and then two in English that the kids can't agree on. (Three kids, one mouse.)

Tomorrow is Friday. We're taking X-man's teachers their gifts tomorrow afternoon. Then we're going to a Candy Cane Hunt via Flashlight at the Prairie Farm. MacTroll doesn't get home until late, but he did find his headlamp before he left for X-man to use.

Oh, and I got foam gingerbread houses instead of the ones made of candy and food. It was enjoyable to do together, but much less messy and no bad candy!

Progress on All Fronts

Friday, I bit the bullet and went into the Savoy Recreation Center to walk 45 minutes. If I could get to 45 minutes without stopping, this meant (at least to my physical therapists) I could start moving onto more difficult exercises. It might also mean that I could cut back from 3 visits a week to 2 visits a week, which is nice in not only getting some of my time back, but is also nice because my copay is $30 each visit! (I get totally re-evaluated tomorrow, so I'll know then). Anyway, I completed 45 minutes which was nearly 3 miles. This is very exciting because three weeks ago on Thanksgiving I walked 1.8 miles in 51 minutes. Two legged work is now easy... but now I have to focus on one-legged work. And that's a lot harder.

The other progress has been coming from X-man. He's learned to make a regular capital R, and he's doing it most of the time now when he writes his name.  He used to make what looked like a popsicle with two sticks coming out of it on angles for his R. You can see an example of the popsicle R on the lined paper image below when he writes the R in his name. But the correct R is on the less neatly written unlined image further below.

His "copying" has gotten really good. So when you give him a word to write, lined paper and some time, he does pretty great. It's readable.

When you ask him to make a list often gives you hieroglyphics. He'll point to the letter-like symbols and tell you what they say. That's normal for beginning writers (you'll often see kids do it in pre-k). It's just not usually neurotypical for a first grader. But now, since he's been writing more and reading more, he's starting to pick up the letter sounds at the beginning and the end of words. He wrote a letter to Santa the other day where he copied some words (because we went over what the different parts of a letter are and he could see words like please, thank you, etc. in my letter example). But he phonetically spelled nice = nis. I don't correct him when he does this because he's finally starting to be able to deal with the auditory part in his brain. When he reads, he's mostly memorizing words and word order. That makes spelling so much more difficult. He's a very visual learner.

Anyway, at school they were supposed to make a list of jobs. This is what came out.

Number 1 is Architect. It starts with an "r" sound and ends in a "t." He had to explain to me what it was, but once he did, I got it, plus, he knows that's what his cousin Nathan plans on studying at college next fall.
Number 2 is Dom. Meaning dome. He had to tell me he was referring to the people who dance and sing and put the shows together at Assembly Hall, our local theater space, which is, indeed, a dome of sorts. (A saucer would be perfectly acceptable in my head, too.).
Number 3 is the same. He knew Dom wasn't quite right, and said he got frustrated, so he tried to write it again.
Number 4 I knew without asking. "Mathman." (i.e., He can grow up and be just like Don Cohen.) Notice that he knew that math starts with "ma" but has trouble with blended sounds like "th" or "sh." His spelling test this week was all about those two blends, so we'll see how he did. But it's clear that he knows how to spell "man."
Number 5 or 6 are anyone's guess. I guessed 5 was "Cook Cop" but drew a blank for number 6. And he was tired of talking about it and had moved on. So, I guess I'll never know. :-)

But you can see a radical difference in how he copies when the visual letters are there in front of him and the obvious struggle his brain has when trying to work on spelling words in his head and putting them down on paper. Suddenly lined paper doesn't make sense. Spacial awareness between letters totally disappears. It's like decoding the phonetics and translating the sounds to letters and then thinking about how to form the letters correctly gets all jumbled up in his brain.

We checked out a book from the library called "Ralph Tells a Story." In it Ralph is never able to think of a story to write during writing time. And finally, he thinks of one. My favorite part of the story though is the illustrations, which show that during "sharing" time, Ralph holds his paper to his chest and TELLS this elaborate story in his head about finding an inchworm to play with that a baby comes along and stuffs down his diaper (ewwww!) and then it crawls out. But when you see his paper, you see that what he wrote was one five word sentence. I pointed that out to X-man, and he was fascinated. His goal is to be able to write that one five word sentence from his head like Ralph regularly. I think he's close. He did after all tell Santa in his letter, "You are nis."

:-)

Today, when MacTroll and I walked over to pick up X-man, we were met by his teacher. She has very pretty, large eyes. And as she started talking to me, I focused in on them. They were happy -- no. They were elated. His teacher walked him out today to tell me that he had a phenomenal week at school this week. It was awesome to hear. 

I opened his backpack and found some writing samples from earlier in the week where he was practicing his spelling words. The difference between how he's writing now and how he was writing in late September is amazing. He's met with the OT four times at school and three times and there is considerable improvement, particularly in his Rs. 

I honestly gushed over him all the way home. 

When we got home, X-man and MacTroll wondered down to the basement to start playing the new Lego Wii game we ordered. It's Lord of the Rings. And this time, MacTroll and I have decided to play a slot together that is different from the game X-man has declared "the family game" or "group effort" (because he doesn't like to start from the beginning). 

Our new oven got delivered today because the old one broke right before Thanksgiving. But we'd been eating our way through the things in the cupboard and had no groceries, so we went to Burger King (X-man's choice). Ironically, BK actually has something I can eat that's not a grilled cheese sandwich or a pile of iceberg lettuce. So I had a veggie burger without the mayo and a diet soda. While we're waiting for our food, X-man looks up and sees an Exxon Commercial. And he says to me, why are they lying?

I turn around to see the commercial. It's got a lot of green in it and the words I see are about ExxonMobile helping teachers. Then X-man starts to go into an advertisement he saw on TV where ExxonMobile was talking about having cleaner gas in an effort to try to put a "green halo" on their non-eco-friendly product. X-man still sees things in black in white most of the time, and he's aware that the oil companies are pretty much raping the Earth for oil because Americans (including our family) use depend on our cars way too much. And if he didn't get enough of that view leftist me, he totally remembers the BP oil spill in the Gulf. (I'm pretty sure Valdez was when my childhood distrust and disgust for ExxonMobile started, so this makes sense to me.)

I pointed out to him that it is possible for large oil companies to give money to lots and lots of causes that help humanity out (like donating to school teachers) but that it doesn't really make up for the environmental issues. It's pretty much just a misdirection. I also talked about how Exxon was the richest company in the world until a year ago when the Fruit passed them up.

X-man seemed to like this information. It made him smile. 

Then we dropped him off at the Little Gym for a parents' night out. He hadn't been to Little Gym since August. They're relocating to Urbana in January, so I'm not sure he'll ever really go again. We've been making use of the longer (and cheaper) parents' nights out at the Savoy Recreation Center and the YMCA. 

Now he and MacTroll are playing Legos. There's a whole military command scenario being played out. 

Now he's using Facetime to tell me he's coming to give me  a hug. 

It was lovely until...

Our Chicken New Year (as X-man renamed Thanksgiving) was pretty low key. It consisted of my sister, my parents and my cousin coming to dinner. My dad brought X-man a deck of Star Wars Villains playing cards, and he managed to wipe the floor with Papa, Mom and Dad at War and Go Fish (that is after we all sat down and discussed what movies each of the villains came from). He also played a little wii Batman 2 with MacTroll and some sports with me. But I liked being just around the corner listening to him from time to time talk to other adults. He was in a good mood the whole time.

He ate the bison MacTroll grilled, and the salad I made. He liked the owl ice cream cake I picked up for him at Marble Slab, just in case he considered the dessert my stepmom brought to be too adult (it was delicious chocolate cheesecake!).

I turned on Pixar's Brave a bit later after everyone who wasn't at our house left, and my sister and mom had gone to bed (before 8 p.m.). It was a bit of a wrong move, because X-man was very upset by it. The whole movie is wrought with tension between mother and daughter and there's a time crunch crisis. It did help that I could fast forward through the "bad stuff" which made it a very short movie.

However, it's now 3 a.m., I just woke after having a dream where it was nighttime and I was stuck in traffic and I was late to pick up my son from somewhere. I couldn't get to him, and then I didn't know where he'd be after the pick up time.

And now MacTroll is vomiting in the downstairs toilet. I think I'll go sleep in X-man's bed. Poor MacTroll.

Update 3:48 a.m. And now he's sawing logs...

504 Plan Meeting

Today, Joel and I had a 504 plan meeting at Xander's school. The meeting was initiated by us after Xander's handwriting issues came to light and the fact that he's starting to get socially ostracized at school again and his teachers reported that he falls apart crying repeatedly during the day as a result of his social anxiety.

At the meeting were his two classroom teachers, the school special education director, the school psychologist, a speech therapist, a special education curriculum coordinator, the assistant principal, another first grade teacher and us. The school team had done several observations of Xander looking at different areas of development. Everyone was in agreement that Xander has developmental delay issues that cause social issues, handwriting issues, spatial issues and fidgeting/sensory issues.

His constant fidgeting, nose picking, biting on his fingers, picking at his clothes, etc., are getting worse. He no longer uses his purple fidget appropriately in class, so we are looking for other options for him, like putting velcro under his desk so he can touch that, and putting bands on his chair so he can push his feet against them (he has a habit of constantly tipping his chair back). They'll also be creating boundaries (like a square section where he sits on the carpet) and giving him a flexible stool so that he can still move, but will know where all of his body parts will need to be contained. This might also alleviate all of his picking at his socks and shoes if they're on the floor and he's sitting up.

These aren't discipline issues. He appears to lack the executive function ability in his brain to stop these habits or regulate his intensity of emotions. Thinking that you can use discipline to cure him of his issues is pretty much the equivalent of thinking you can cure someone of being gay or beat someone into being developmentally normal. Xander is not neurotypical for his age. The anxiety he feels has begun to manifest itself in some sensory defensiveness according to his occupational therapy evaluation. So, we have been purchasing special seamless socks and cutting tags out of clothing items, when needed. It's not all the time, but usually he's kind of amped up before school, so that's when shoes suddenly feel too tight and underwear tags pain him, etc.

One of the social workers will be going into his classroom to talk about how children are different. The teachers have identified that for the most part, kids are pretty sympathetic, but that doesn't mean any of them want to make X-man their friend. They avoid him. But the teachers do say that there are children in their class that will try to provoke him when the teachers are not looking to get him to react/cry because they know he's different. The teachers have tried to have him work with 22 of the 23 children in the class as a partner in learning (reading activities/math activities) and they have identified only one child that he is able to be consistently successful with. On the playground, he will sometimes play in a small group (if they play tag) and he does follow directions, but he does get easily overwhelmed by group activity or by his emotions when he wants to play something that the group doesn't want to play. His communications and relations with adults, however, are very clear.

He'll be going to the social thinking/Zones of Regulation group twice a week and will continue with the handwriting group once a week, in addition to his behavioral therapy with April and his handwriting with Kim (our Occupational Therapist) out of school. 

We meet again, as a group, on Jan. 22. If things aren't responding to the 504 plan, we'll probably try to develop an IEP, which is tricky because there are specific parameters for a child to fit in to get one and the "educational" consideration to get one with his issues would be under "autism." X-man's difficulties, according to my reading, mirror three different developmental disorder possibilities: autism/asperger's, PPD-NOS and Gifted. The school label does not mean anything in a clinical setting. It's just the best way to get him the services he needs, and right now, it's often difficult to be labeled "Gifted with a learning disability" in a public school setting anywhere. In fact, often children who perform at grade level standards don't get selected for services, because technically, despite whatever learning disability or disorder they have they are seen as functioning within normal perimeters on a cognitive level.

The handbook for doctors that determine these diagnosis and the requirements are changing in May 2013. Asperger's and most of the kids identified as PDD-NOS will no longer be on the spectrum because they usually usually have normal cognitive abilities. Instead, they'll have to be rediagnosed as having a social/communication disorder (which we won't know the specifics of until it is released).

So what's the difference between a 504 plan and an Individual Educational Plan (IEP)? Both plans are supported by the federal government and must be acknowledged in every state. However, a 504 plan is for individuals who have less issues than someone with an IEP. The idea is that with the appropriate minimal accommodations and interventions the child will be able to be successful in the classroom with a 504 plan. With an IEP, it's recognized as a much longer road. If we move to California both plans will move with him, the difference is that with a 504 plan, the new school district will implement Illinois' plan but will immediately initiate a 60-day review and may make changes and revisions as they see fit. With an IEP, they have to follow the goals exactly as in the plan. From what I've read last night, the plan is usually in place for about 3 years.

If in January, we don't think there's been enough beneficial movement forward, we'll be working on an IEP, which means the school district will need another 60 days to complete their reviews/observations. In that regard, we'll be putting the house up for sale more at the end of March than the beginning to make sure we have everything ready and in hand in case we sell early.

But that's how the meeting went. There were no surprises, and everyone was very supportive and on the same page. His teachers are amazing. They're very honest about his needs and open to helping him any way they can. We are very thankful for them. 

X-man's Influential Literature Library

We've been working a lot on self-acceptance and learning through social stories at our house this fall. X-man gets so moved by certain children books that sometimes he cries out of joy, other times he sobs in sadness, and more often than I like, he asks me to shut the book or skip pages because the storyline makes him nervous or scared. "One" by Kathryn Otoshi is one of the books that he always goes back to when he feels insecure. It makes him feel better about the world, and empowered to know that he can make a difference. He also likes that he can talk about how there are less bullies than one might think. In fact, most of the characters in the book are confused, scared and unsure about what to do to solve a community bullying problem. The hope from finding someone who might be afraid of standing up to the bully, but knows it's the right thing is a big deal.

So, when I found Otoshi's second book in the series, "Zero," on the shelf, I bought it immediately. It's about a number that wants to change who he or she is because he or she envies things in other people that he or she doesn't have. This is something else that is rampant in our house. It inspired us to take another look at all the good things we have in our lives, and remember why we rock.

Todd Parr is amazing. I have loved the social constructs in his books forever. I like that his crazy drawings to get to be themselves, that they eat macaroni in the bathtub, that Mommy's work and stay home, that some families have two daddies, or one parent or that children might live with their grandparents. It's Okay to Be Different really focuses in on how diverse humans are and why we should not only be okay with ourselves, but we should be okay with others' differences, too.

X-man is a sleuth. He wants to figure out what he doesn't understand and social situations challenge him. I found this book through the library system before he started with April Keaton. During X-man's second meeting with her, she came out and said, "He said he just read this at home with you." I smiled. This weekend, X-man had a play date with a new friend. The Mom stayed and she and I got to talking. It turns out that one of the elementary schools in town teaches their entire school about social thinking, because it helps everyone with what to do in social situations (bullying, teasing, communicating effectively and respectfully, etc.). For a moment, I was a bit jealous of that school, because maybe, just maybe there'd be more understanding for a child who is different in a more educated environment. CB has a social thinking class this year, but it's limited to just those that have special needs. It's a step in the right direction, but there could be more. Michelle Garcia Winner lives in Northern California. So here's hoping we get to do more with her work when we move.

 My mom read "Alexander and the Terrible, Horrible, No Good, Very Bad Day" to me when I was a child. It was a story that sometimes I'm allowed to read to X-man and sometimes I'm not. He gets sad for Alexander and gets worked up at how absolutely rotten his day is going. But at the same time, X-man understands that everyone has days like that. Days that suck because of bad luck and bad choices, and that tomorrow is a new day.

 We liked reading "The Art of Miss Chew" and "I Gotta Draw" because they're both books about children who learn differently from the majority of their classmates. They're also books about how teachers who are open-minded and able to adapt for their students can get some awesome results, that not only help children learn but make them happy about going to school.

We have been reading Violet the Pilot since X-man was three. Violet is a mechanical genius and none of her peers in her school want to hang with her. Her parents are amazingly supportive of her endeavors and encourage her (while also trying to set a few safety boundaries), but her only real friend is her dog and her brain. Even though she's ostracized at school, it doesn't affect her ability know what's right and what's wrong, and she self-sacrifices something she wants to save the lives of others in her community when she sees them in a state of distress. 

For a while, X-man was having some trouble following Ms. Frizzle's encouraging words in all the Magic School Bus books about learning through mistakes. He would often not try something because he was petrified of getting it wrong. He thought it made him a bad kid for not being the best at everything. He's chilled a lot between kindergarten and first grade with being anxious about showing vulnerability. He's become more accepting of himself and others. But in the heat of it knowing that there were other kids that were restricting their life experiences out of fear of error was fundamental in him learning to accept that he's human and that no one expects him to be perfect at everything.

X-man's librarian read him Memoirs of a Goldfish last year when he was in kindergarten. It's the story of an only goldfish who relishes his only-fish existence, until his owner decides to make his life a bit more interesting by invading his bowl with other elements and neighbors. Goldfish is very slow to warm to the idea of his quiet life being invaded by others. They make him anxious and unsure, but in the end, he figures out that he understands that his life has become richer with those others in it than when it was just him in a bowl of water. 

Julia Cook is this generation of parents "What do do" lady. We read X-man her "Teeth are Not for Biting" and other books when he was a toddler. And now she's moved on to more advanced social issues for the elementary school-aged. She has a book for almost every social issue your child might face (kicking, hitting, using words, etc.)

Teaching an Old Mom New Tricks

I've been working on this post for a while, because I wasn't sure if I was going to actually post it or not. Every person has his or her own learning style. Mine is that I'm a research hound. I find out something that interests me and I dive into it. For example, motherhood. When I decided to become a Mom, I checked out every pregnancy book I could get my hand on at the library before I was even pregnant. I wanted to know what I was getting into before I jumped in. I found out quickly that there were books I had to get rid of because they annoyed me in how they conveyed their information. There are a million books about pregnancy and parenting that feel "judgy" to me. That if you don't follow their recommendations to the T -- you are a failure or you're committing child abuse, etc.

Learning about the realities of kids with social anxiety issues like X-man and talking to his therapists and reviewing notes I've taken on his behavior since he moved from side-by-side play to interactive play led me to looking up texts regarding children's social skills. And by look up, I mean full on all-nighters. I feel more comfortable when I "know" about things. I was this way about my foot surgery, too. I don't like surprises when it comes to this kind of stuff. Surprises for birthdays or holidays or just because it's a Tuesday in January, sure. My child's mental health -- not so much.

This means I have a pile of books both from my library and from the Illinois Early Intervention Clearinghouse thanks to my friend LL who works there. A lot of them were created for general education teachers to help them plan and implement ideas in their classrooms. Some are focused on how to best advocate for your child in an IEP meeting. Most of them are about PDD (Pervasive Development Disorder) which is currently what the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) calls Autism, Asperger's and PDD-NOS (Not Otherwise Specified -- which is a catch-all for -- "You share some symptoms with a lot of diagnoses, but aren't clearly on the spectrum in any particular place). There's a great book called "Teaching Children with High-Functioning Autism" by Claire E. Hughes-Lynch, that addresses up front the difference between HF Autism and children that are Gifted.

When I looked at the chart above, I realized that for the most part, the characteristics on the gifted side resembled my son much more than the HF Autistic side, but I found it made sense to me that there were areas were the two "groups" crossed over, particularly in the Attention and Interest Areas.

Growing up in Rockford, I was in a self-contained gifted class from seventh through twelfth grade. I have to admit that I got into it by the skin of my teeth -- like two points on whatever standardized test they had me take when I was 12.

It never occurred to me that they taught me any differently, particularly when the tests the Chemistry teacher gave the regular juniors were the same we got in gifted education sophomore year. I always assumed that "gifted" in my school district meant that you were intellectually smart and tested well, and well, that was it. The sections on "gifted" kids in Hughes-Lynch's book talks about gifted children needing to be taught differently. It also talks about how their neurological processes maybe advanced cognitively but may be thoroughly underdeveloped socially. There is also a "tremendous overlap in characteristics between children with HFA and children who are gifted."

I also learned that anxiety disorders almost always coincide with children who are diagnosed with being on the spectrum, having ADHD and being gifted.

The big word I learned to represent that there are numerous children who have symptoms that overlap diagnoses is comorbidity. Because we have a 504 meeting on Tuesday, I'm trying to read up on how to best advocate for my child. As far as I can tell, X-man doesn't fit into one particular diagnosis more than the others, and because the DSM-IV is changing in May, the one he might fit into best (the random one) is likely to be changing all together from being part of the spectrum to being a communication disorder. And the books are all pretty repetitive in their frustration about how subjective nailing a diagnosis can be for a child with symptoms that work with multiple diagnoses.

Let X-man be X-man has always been my philosophy. It usually works out best. But sometimes in a classroom of 24 people X-man can't be X-man, or at least he doesn't feel like it's okay that he's him.

I talked in an earlier post about a friend who said the key to socialization success in school for her child with Aspberger's was to be quirky rather than weird. As it turns out my favorite book in the heap that I have is called, "Quirky Kids: Understanding and Helping Your Child Who Doesn't Fit In -- When to Worry and When Not to Worry" by Perri Klass, M.D. and Eileen Costello, M.D. It pretty much covers everything and gives a lot of consideration to kids with overlapping symptoms. "Note the way that quirky children, in their rich variety, have made it necessary to create certain categories that are defined by NOT fitting into any categories" (i.e. PDD-NOS). It was also interesting to note that "Virtually all these children have trouble making friends, their behavior is just strange enough to make other kids uncomfortable or scared. The inability to see another's point of view, the anxiety, the tendency to have rigid expectations of others, and the lack of flexibility combine to make this child more alone in the important social world of childhood."

It even hits on the difficulties at home and in the parenting community, "For parents of quirky children, these parenthood realities are particularly intense and charged. Life at home can sometimes feel like an hour-by-hour struggle. It doesn't help much to have well-meaning friends assure you that, of course, they understand..."

So, as I waded through all the PDD stuff, I requested a lot more books on different subjects that they didn't cover very thoroughly like the children with intense emotions. And I found an awesome article on dual diagnosis of being gifted with learning disabilities from SENG (Supporting Emotional Needs of the Gifted). The Internal Factors and Dual Diagnosis headings are fascinating because they not only cover gifted children often having high verbal skills but most of them having poor writing skills and about how schools often don't allow children who are classified as learning disabled to be gifted and vice versa, even though it is entirely possible to be both. Gifted children have tremendous emotional frustration from having minds that can create wonderful stories and understand complicated concepts, but brains that can't seem to get them down on paper.

Then there was an "Ah HA!"

"Along with intensity, one typically finds in gifted individuals an extreme sensitivity-to emotions, sounds, touch, taste, etc. These children may burst into tears while watching a sad event on the evening news, keenly hear fluorescent lights, react strongly to smells, insist on having the tags removed from their shirts, must touch everything, or are overly reactive to touch in a tactile-defensive manner."

This is what we have been going through lately. (Table 1 in the article is also pretty informative regarding strengths and weaknesses).

I am not a doctor. I have never played one on TV. I'm not a social worker or a therapist or pathologist. I'm just a Mom who is trying to figure out how to help her son be successful in a mainstream school environment and how to learn to appreciate his strengths and his weaknesses and to recognize self-acceptance. Do I think my child has PDD-NOS? I don't know. Do I think he's gifted? I don't know. Do I think he's got some sort of Asperger's? I don't know. But I do know that the emotional issues he has are symptoms from all three diagnoses.

I also know that he is a kind, smart, sweet kid, who, when he throws a fit isn't try to be a spoiled brat -- he's trying to rid his brain of the overwhelming feelings he has of fear, shame, frustration, anger, neglect, etc. He has not developed enough to have the ability to calm himself, to focus. Or as stated in Quirky Kid, "Quirky children have tantrums that don't go away if you ignore them, that don't lend themselves to limit-setting and time-outs... Parents don't create the rage in their quirky kids. Tantrums, in most quirky kids, are a combination of their developmental differences, their sensory problems, and their peculiar emotional wiring. You can help your child progress developmentally, filter and accommodate the sensory stimuli, and handle the emotional impulses, but you must do it without laying blame, either on him or yourself."

This is what I've learned so far. I'm going to continue researching emotional intensity and see what how much all of this helps when we go in for our 504 meeting on Tuesday.

On a side note, X-man went to the Sloppy Science program tonight at the Phillips Recreation Center in Urbana. As we're walking in, he tells me he's scared. Then he says, quite matter-of-factly, "Not scared, nervous. Nervous because this is new. I've never been here."

I reassured him that the program was just 90 minutes long, and that it looks like it's the first time they'd had it. If he likes it and they do it again, he could sign up. If he didn't like it, well, then he gave something new a try in the name of his love for science. When we walked in they had some slime on the tables. Another boy came in with his Mom, and he was nervous about staying, too. The boys introduced themselves. He was in first grade at Southside. And then they were both okay with the parents leaving because they could bond with each other.

When I came back, X-man was at a table with three other boys. There was a table of five or six girls to the left, and a table with a boy and a girl together in the back. He told me the different experiments that they did. He said he enjoyed his time there, and he totally dug checking out the dancers that were practicing in a different room on our way out. He was a different kid from the flailing crying mess I picked up from school three times this week. The difference being, I think, the couple hours at home where he just got to chill out and decompress and have some time not stimulated in a busy classroom environment. It also helped that tonight there were 12 kids to 3 adults at the Science event. It meant there could be a lot of one-on-one attention, which X-man thrives on.

A Day To Celebrate

Today, X-man had a series of awesome.

The first is the math he loved doing after school today with the Mathman. X-man is learning division. Check it out. His handwriting (the top numbers) looks pretty lovely, too. It's funny. There are days where he has bad days, and he just can't get himself together to make it to soccer, but he's always happy to go see Mr. Cohen. And I like that. He's like a little math sponge, and he likes it that way. There's no agenda when he goes, just to learn and enjoy it.

The second excitement today was that X-man reached 50 "Terrific Notes." He missed five days of school when we went to Maine in August, so he didn't get those, and he got too many tally marks (you have to have less than five to have a terrific note) on three other days. I was very proud of his work, so I made him a big yellow star to post with it. X-man does his chores around the house with the idea of getting allowance. But I did tell him at the beginning of the year when he brought his first note home, that if he got to 50 notes, he could pick out something special from the Toy Store. So tomorrow after seeing the behavioral therapist, we'll head up to north. I suspect it will take a while for him to pick something out (so many toys under a limited dollar constraint is hard work when you're 6 -- especially if you divide it up between two or three items and your Mother makes you work the money math!), so we're going to eat dinner up there, too. Then I'll take the notes down, and we'll start all over. 

The "oooh aaah" Wednesday item is that X-man's teachers gave him a new anxiety chart today. The theory is that he feels from a 0 to 3. A 0 means he's pretty happy and something good is happening. A 1 is that he got a tally or someone bumped him or did something that was annoying or bothersome. A 2 is when someone makes fun of him or he gets privileges revoked for making poor choices. This is when he starts to escalate. And a 3 is when he's really hurt, bleeding or being bullied. The chart gives him a sense of how his day is really going. It also requires him to tally what is happening emotionally and when so that he knows when he's escalating and can use some of the calming techniques we've taught him from April. (We sent his spinner and breathing card to school in case the teachers wanted to use it.) The idea being that by being responsible for his chart, he'll be able to communicate better what he's feeling before his feelings get the best of him.

This is what the chart looks like. You'll see that he wasn't hurt or bullied today (hooray) but that even though MANY good things happened, the number of annoying or frustrating feelings he had through the day was pretty much double the good things. I asked about some of the things that happened in the 2 level. Three of them were people making fun of him. I asked him if he missed activities. He said no,  but he said other problems that made him feel really sad and frustrated (everyone talking in class out of turn, someone purposely stepping on his foot, not feeling listened to, etc.). It helped him though because he came home today with one of those special pencils that he missed out on yesterday and had no tallies. Hooray!

The last item has nothing to do with X-man, but it had to do with my mail today. I would like to issue an apology to the trees of the world. I know it's Christmas time, but it took two hands to carry my mail into the house today, and many catalogs (Zingerman's I mean you!) are going straight into the recycling pile. 

A New Straw Hole and Tooth Fairy Politics

X-man lost his third tooth last night right before bedtime. He was very excited because he'd been working on that tooth pretty much since he lost his last one in May. That's six months of wiggling and waiting, not so easy for a six year old.

In addition, his friend lost his first tooth the day before. The friend received $10. We've had other friends give that much, but we don't. We give $1 or $2. This morning, X-man asked why the tooth fairy didn't like him as much. And honestly, I made up that there were socio-economically different tooth fairies. Maybe his tooth fairy was just starting out and didn't have much to give. Maybe he had 10 kids at home and had different expenses. Maybe his friend's tooth fairy was old and had made oodles from the teeth he'd collected for the last 700 years. X-man accepted this, because he knows it's true among families, and he decided not to take his $2 rather than $10 as a personal affront.

But he's not ready to give up the myth of fairies. And that's fine. I didn't know how to say that some parents are really excited about teeth and give more money for them.  Sometimes when you're not expecting the tooth falling out, you leave under the pillow what was in your wallet. :-)

What do you give your children for lost teeth, if anything?

Thankful for Things that Work

At MMO, we talk about giving thanks every November. Sometimes it's just teaching the words thank you, sometimes it's about taking note and recognizing what you have. The trick is that this isn't just a unit that gets taught for three weeks and then goes away. It's something that we try to thread into our classrooms through good modeling. The children learn by watching us mind our manners and recognize what is good in our lives.

Life's been kind of messy lately, but I've been finding that people are happy to help when you ask for it. Sometimes they just show up and help when you don't expect it. It's been nice. I've spent more time with my mother and father than I have in 20 years. I was able to count on people I met through the library, through Rotary and in our neighborhood to help with X-man or with driving. It's meant a lot to me, and I don't know if I could say thank you enough for their support when I needed them.

But the things I'm most thankful for are the positive interactions I have with people about my son. I get that a lot of kids don't understand my child. They think he's weird. He has trouble reading social cues. He goes back and forth between being very extroverted and excitable to introverted and nervous. It's one or the other. And I understand that his social issues are the reasons why a children don't really like to play with him. How do you play with someone who freaks out and cries a lot over what seems to be -- nothing but a transition or a change in plans? It also doesn't help when he's sad and people are casting disapproving looks in the hallway. Yeah, I see them. So does my kid. Please keep your "What's wrong with your kid, now?" attitude to yourself.

The other day we were playing at the playground after school and X-man was trying to figure out how to play with a bigger boy. The kid clearly didn't want X-man around, and he understood that. So, he asked point blank, "What can I do so you'll want to play with me?" The older boy looked at him like he was diseased. Then he walked away without answering. I saw X-man furrow his brow in a panic. Then he sucked his panic back down and did what every adult had ever told him to do -- rather than tattle, he tried to take care of it on his own. And so he ignored the social cue the boy was giving by walking away and followed him trying to reason with him. "Why are you walking away? Why don't you talk to me so we can figure out how to play together?" He followed that kid for around 40 seconds before the kid ran away to get away from him. And X-man thought he was initiating a game of tag. Sigh.

Ignoring those social cues and not being able to see others' points of view is part of X-man's anxiety issues. He gets that he's missing something. That he's different. He'd rather play by himself or with one other child than negotiate small group interaction, and I'm not the only one who has noticed. It's what he works on with his behavioral therapist, April Keaton.  But social skill ability takes a lot of time and practice to sink in.

The difference between this year and last year is that this year, instead of falling apart when he's ostracized, he's self-banishing himself to the security of individual play. Playing by himself is easier. Apparently, it happens at recess from time to time. He avoids small group interaction like the plague because he doesn't know how to navigate it. He requests one-on-one play dates. His assistant principal thinks he's so exhausted by the end of the day just trying to negotiate himself in a classroom with 24 other kids and that's why from time to time on the walk home, he just has to sit -- and stare or cry.

So, we've been working with this issue for a year. Then we added X-man's challenges with writing and handwriting and some sensory issues (hooray for seamless socks!), so MacTroll and I scheduled a meeting with the administrators at his school last week. We met with them and talked about what we'd been working on, what they'd seen in school, what the teachers told us and the administration, and we all agreed to start X-man on a 504 plan. Next Tuesday, we'll all be sitting down together to make sure he gets services at school as well as out of school. A 504 plan also means that we can take it with us when we move, and his new school in California will honor it while they perform their own evaluation to see if anything needs to be updated or changed when he's there. In other words, he won't just start from scratch. Everyone seems to be in agreement that they think he just needs some intervention and some accommodation and instruction. And I trust his teachers and his principals, a lot.

This weekend, we read the book "The Art of Ms. Chew" by Patricia Polacco from the library. It's about a girl who has trouble reading, but is wonderful at art. Between her school teacher and her art teacher they figure out that when she sees letters, she focuses on the negative space around the letter before she sees the letter and can figure out the sound. It takes her longer to write and read and think about language. Together, they make the accommodation for her to have more time on tests and assignments and her grades start to respond. But then her teacher has to go away for few weeks, and a substitute comes in who will not accommodate her special needs. She even threatens to have her art classes taken away so she can focus more on her reading issues. She meets with a reading specialist, her principal and her parents, and the sub and the art teacher get in an argument. It's at this point that X-man starts to tear up. "They need to fire that sub!" When the teacher returns from his trip, everything is put back together for the child. But it was a good way to introduce what his parents would be working on with his teachers and administrators and that extra help is a normal thing and that he has teachers that are AMAZING.

He gets that he's different. And as a parent, I understand that if your child says he or she doesn't want to play with a child, you're not about to make him or her do something he or she doesn't want to. But it also makes me sad, and a bit angry, to be honest, that more parents aren't willingly to talk about how sometimes differences aren't just a matter of opinion or bad parenting. That if you look carefully, everyone is a little weird and everyone has strengths and weaknesses, and if you want others to accept yours, than you need to work on accepting theirs. There are other options besides avoidance. There's empathy and compassion and being truthful. In early education, children are much more forgiving than in elementary school. I wish that that would continue to big kid grades.

I have a friend who has a son with Aspergers. She told me the goal in regards to social integration success in elementary school is to somehow move from "weird" to "quirky." "Quirky is kind of cool."

So that's what we're working on. "Quirky."

But I do have to say that it melted my heart the other day when I offered to do something small for Mr. Scott and as he's about to walk away he turns and says to me, "You guys can't move. We'll miss you."

And he said it in that soft toned, sad kind of way, like he didn't want to think about it too hard. Because you know how I wrote earlier in the post that the best kind of help is the kind from people who love your kid? It's also nice when it's directed at your family. In a million years, I didn't expect him to ever say that to me, and I guess I needed to hear that someone will miss us. I didn't think I did. But I do. Recognition that we were here for 10 years, and that we did some kind things that people appreciated, and that we shared part of our lives with people and helped improve the community.

Mr. Scott understands my kid, and he knows X-man's got an ambitious educational future ahead of him and wants to help him succeed.

And for all of this, I have been very grateful lately. I just wanted to share.