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. 

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. 

Fascination with Veterans

X-man came home yesterday from school with this star.

He said he made it after his class talked about Veteran's Day. (Carrie Buesy is having a Veteran's Day program on Monday at 10 a.m.) If you are good at reading backwards, you see that it says "Uncle B."

Two years ago, my great uncle passed away. X-man went to his funeral. It was the first time he had been to a funeral (not as an infant). It was his first "open casket" from across the room experience. But he was fascinated with how we say goodbye to the ones we love. He was also very interested in the ceremony that was held at the cemetery with the Navy there to recognize my uncle's years of service.

Shortly after X-man and I adopted a soldier for a year, until he came home from Afghanistan.

But it was really sweet how when he was asked if he knew of anyone in his family he'd like to remember for his service, X-man thought of Uncle Buddy.

That might also explain why he wanted to watch a National Geographic video on finding the WWII Nazi ship the Bismarck this morning... or maybe not.

First Day of First Grade

We woke up this morning at 6:15 a.m. I wake up at that time every morning to let out the dog and feed the cats. Then I usually have "Mom" time (i.e. running the dishwasher and doing laundry). But today, I had to wake the monster.

X-man likes to listen to the radio, particularly the morning show on 94.5. He ran into my room several times this week announcing, "Mommy! Facebook has no money!" or "Daddy's company has the most money!" But this morning was, "Some guy passed out in a car and had some kind of ring on his junk and some people went to breakfast when they should have called the police first." (And I totally took my advantage of it being 6:30 a.m. to negotiate around having to explain that some people refer to penises and vaginas as "junk.") I'm not ready for that yet.

He ate breakfast. He watched a little TV. Everything was fine until we went to take photos. Then he was cold and wanted long pants. I told him he'd be burning up at the end of the day in long pants. And I was right. As it was, he left his sweatshirt at school. :-) Anyway, he threw a fit about not wanting school to start. And this was the "first day of first grade" photo that I got.

We leave to walk to school at 7:30 a.m. X-man was bummed that none of the neighbors were walking with us, but I explained it would take each family some time to figure out what they'd like to do. We said good morning to the two county sheriffs that were directing traffic. We saw that the park bike rack was full. And then as we're going near the front doors, I asked if I could take another photo. X-man refused. But then he said, "Maybe you can take my photo after school, if I decide I like it."

There was some kind of SNAFU about "walkers" at school today. But at 2:35 or so (20 minutes late) X-man walks out the side door. He meets me down the sidewalk and announces, "I liked it!" Then he told me I could take is "happy" photo now. :-) 

He brought home a folder full of information. And in that folder was something we didn't get in kindergarten unless it had something to do with attendance. I know in my heart that every kid probably got one today. But to me, it was really special.