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.

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.