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."

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.

Intervention

X-man has difficulty with his handwriting. He does much better on lined paper, but it's still not very good. I grew concerned after I saw his first spelling test, so I e-mailed an acquaintance of mine who is an occupational therapist after I talked about his handwriting issues with his teachers.

The OT went over the "options" with me about having him evaluated (by school folks versus hospital folks versus a private OT). But then she told me to hang tight because her son goes to X-man's school and she was thinking of volunteering some of her time. I found out today, she'll be having a handwriting intervention for children in the lower grades on Monday afternoons. I e-mailed X-man's teachers about it today, and they totally support him attending. Hooray for parent/teacher communication. :-)

This is a good thing. What I'm hoping will happen is that he'll get some practice in, but also that the OT can tell me if she thinks he should have an evaluation looking into any Visual Motor Integration issues or into the Visual Auditory Integration issues depending on how things go with her. Delays or disorders in these areas would help explain why he has so much trouble with phonetics when reading as well as his difficulty with writing. He likes to memorize words, not sound them out. So we have to break them down to one letter sound at at time which helps him read a word, but then when you ask him to spell it the letter sound"bah" doesn't translate in his brain into the letter "b."

In addition, he also reverses his numbers and letters a lot. This is normal until children are around 8 years old. But I also know that MacTroll had issues with his dyslexia and when he was younger and went through speech therapy. So, it's something we look out for.

We've been working on fine motor skills at home with scissors and rock crayons and (of course) Legos, but I also have invested in some fun spelling apps where I can input his spelling list and he can spell the words in various games. He always picks the game where he has 4 different spellings (3 incorrect and one correct) of the same word and has to pick the right one. Or he'll break down and do the game that shows him the word, reads him the letters, and then asks him to spell the word using the keyboard. He can repeat the word orally, but not see it again. But it does at least give him one visual clue. He HATES when I try to get him to do the game where it only reads you the words and there's no visual cue at all.

I also downloaded Dexteria's LetterReflex Flip It, where it gives the kids letters going all different ways and they have to flip them the right way to help with letter discrimination.

I also talked to his teachers about him having trouble hearing the letter "l" in combination with other sounds (for example "Sled"). She said this is a relatively common problem. They're testing new curriculum, so they're taking notes about where these activities might work better and doing a lot of individual work with the children to get them more appropriate learning situations for their abilities and levels. It's nice having two teachers that work Reading Recovery lead a classroom. No one gets left behind, and they see and value each of the students as individuals.