One Sick Mother

Only An Aspie... ;)

Joe returned home late yesterday, having stayed on at school for the Games club (he did warn me in advance that he was planning to do this).

Me: "So Joe, how was the games club?"

Joe: "I didn't go to the games club. It was too crowded. I went to Mathletes instead"

Me: (who would rather stick a fork in her eye than volunteer for Math): "So how was Mathletes?"

Joe: "It was fine."

Me: "Are you going to do it again next week?"

Joe: "Sure!"

His Grandad would be so proud...

Other People's Shoes

I think generally,  people understand that most people with an Autistic Spectrum Disorder (ASD) cannot (easily) put themselves in "another person's shoes". That is, they have a hard time understanding what that other person may be feeling or thinking and how things may be for that person. Many cannot even conceive of "walking a mile in your shoes".

 

They are stuck in their own shoes

My son Joe, who is (high functioning) Autistic, would probably pass by someone who had collapsed on the street, thinking that person maybe chose to lay down right then and there; and if that is the case, who is he to say anything?  An Autie such as Joe doesn't tend to factor in things like "normal behaviour" or "likelihood" into these scenarios, because to him, NTs are all so weird anyway. There is no telling what we might do! So who is he to question?  However, if I explained to Joe that the person might be in trouble or distress, he would move Heaven and Earth to help them if he could.

Perspective is a funny thing.

Of course, most NT people in the same scenario would instantly figure there is something wrong -even if the person had chosen to lay down right there! (OK the odds are that they didn't. But I'm just saying...)

Most of us non-autistic people, think we have good... whateveritis you want to call it: Theory of mind, empathy, perspective-taking. Most of us think we can place ourselves in another person's shoes and understand where they are coming from.

Sometimes we can. Sometimes we can't.

I have been thinking about this a lot recently. One of the comments on the piece I wrote about Caster Semenya was written by a man trapped in a woman's body. I tried to imagine what that might be like (and I tried to imagine if I were trapped in a man's body).  I couldn't do it. 

I can only imagine my body: My "shoes".

I didn't realize I was quite so unimaginative until now. Now, I know that some experiences cannot be imagined or described, but I thought I could manage simple enough ones like "male" and "female". 

But I can't because they are not that simple at all. At least not for humans.

I remember years ago, reading an interview with Stevie Wonder and he; although born blind, was saying that he does "see" things in his head. Of course he cannot describe them to anyone, having no knowledge of a sighted person's concept of (say) "color"; indeed, having no sight references at all. So we cannot know what he sees. I do wonder if he shares it, wittingly or unwittingly? I wonder if his vision colors (pun intended) his music?

Interesting, no?

Recently, I watched the season premier of Season 6 of "So You Think You Can Dance", which is one of my favorite shows. Allison Becker, A deaf dancer auditioned in Phoenix. She was great.  What got me was that the judges were so flabbergasted that she was great. They danced (pun intended) around the core issue until Mia Michaels finally came out and said in a somewhat roundabout way what everybody else was thinking (I'm paraphrasing here): 

"Why do you (how can you) dance when you can't hear the music?"

The answer was simple.

"I hear it differently"

Then Nigel was waffling on about wanting to see how she would do in choreography and again she just said

"I'll be great"

And she was. She killed the choreography. Here is a link to the video.

(And although somewhat off topic, I have to give a shout-out to the same-sex ballroom couple, whose video is here.)

 

There are some shoes we cannot occupy. Some scenarios we cannot understand, no matter how we try. We cannot understand how a deaf woman hears or a blind man sees. We cannot fully get what it is like to have Autism, ADHD, Dyxlexia or OCD. We can try and understand it on an intellectual level, but we cannot truly get it.

In a funny way, I thnk Joe has an advantage in this over me. He KNOWS that he doesn't get other people. Therefore instead of trying to understand them, he usually just accepts them. He has no problem at all with the concept of a deaf dancer. She's deaf, she dances: So what?

Whereas I, who consider myself an empathetic person, find myself trying to understand instead of simply accepting. And then I realized that I have been guilty of "Murakab"  in my attempt to teach Joe about putting yourself in other people's shoes. I had assumed that I could always do it, and that one always should do it. I didn't fully realize that there are times when one CAN'T do it. I didn't fully understand that: Hence murakab, which means 'complex ignorance"; I didn't know that I didn't know (as opposed to simple ignorance, where you know you don't know).

I have now realized that there are times when Joe's approach is better than mine. There are times when I cannot -simply CANNOT place myself in another person's shoes. That does not mean their experience is invalid (not that I ever thought it was). It just means that instead of trying to project myself onto them, I will choose to accept them on blind faith, like Joe does.  That isn't easy for me.

Having just said that, however,  if I ever do see a person collapsed on the street, I will not assume they chose to lie down and take a nap.

(All the art in this piece is by Renee Magritte, 1898-1967)

Resisting Urges

We've all had to resist urges in our lives: That urge to blurt out something funny but inappropriate (although I personally have probably failed to resist this urge more than I have succeeded. I blame ADHD). The urge to just drop everything and take a plane to somewhere sunny; the urge to push everyone out of the way and jump to the front of the line. The urge to tell your mother-in-law just where she can put her cat plates. The urge to beat your daughter's orthodontist to a bloody pulp with your cane.

Oh. You've never had that last one?  That must just be me. 

...yesterday.

As I mentioned before, Grace irretrievable lost her palate expander while we were in DC. I thought they would just make a new one from the old mold, but as several months have passed, they decided to re-cast her mouth and make a totally new one.

She went yesterday to have it fitted. She immediately complained that it hurt, so the orthodontist loosened it. She still said that it hurt, and they were having trouble getting it to fit. Finally, he asked her to point to where the problem lay? She pointed at the very top of her palate. The unit was too high and was digging painfully into the roof of her mouth. The guy basically said that he couldn't adjust that part, but she would "get used to it". I saw Grace's hands go to her eyes in a gesture that is characteristic for her: one in which she quite literally tries to hold back tears (I figure she read that expression in a book and this is her Aspie implementation). 

Time to get into mamabear mode:

"You know, I have seen her dislocate a hip and not cry. So if she says it hurts, she isn't being a drama queen. It hurts." Their attitude changed at once and the expander was removed.  The assistant said something like "That is good to know, because my daughter is the opposite and will cry at anything". And we had a little discussion about which was worse (we both agreed that "drama queen" is worse, although you usually can pick out a cry of real pain instantly).

In an attempt to troubleshoot (which used to be my profession), I asked the orthodontist to check if he had received the correct unit? I know these things are custom made. I wondered if maybe there had been some mixup and we had mistakenly gotten an expander that had been cast for someone else? He didn't check. He just shook his head and said it was the right one. OK maybe he had checked already (but he could have told me that). I mentioned that the expander did look much "taller" (and a completely different shape) than the old one, but as we didn't have the old one for comparison, it was just my word, which apparently accounted for very little

Then he got out the dental power tool and tried shaving some stuff off the top of the expander. But there was not much to work with, so it didn't help.  Finally he admitted defeat and said they would make a new one.

"So you are going to re-cast her mouth?"

"What (as if this was an alien concept)?"

"Well, I can't help but think if a new unit is made from the same mold, that unit will have the same problem, right?"  He looked confused as the young assistant nodded vigorously.

So they re-cast her mouth.

And afterwards I took her to the smoothie place to get an overpriced smoothie as a reward for not punching the orthodontist (though I didn't phrase it like that).

I had one too.

More Bus Drama

My regular readers may recall that last year, I had to petition the school district to make a new school bus stop nearer to my home. This is because my children and I all have Ehlers-Danlos Syndrome, and I was afraid that the walk to the old bus stop, which involved walking on a street without a sidewalk and crossing two streets, might be dangerous in icy weather. If you have EDS and you slip on ice, there is a very good chance you will dislocate at least one joint (and not be able to get off the ground unassisted).

So last year, I had a series of battles with the district and the doctor's office to get it all sorted out. You can read about (most of) that here and here.

Last week, around Wednesday or Thursday, I realized that I had not received the little yellow cards that tells me the bus route details. I was pretty sure Grace's would be the same as last year, but Joe starts middle school this year and the times/routes are definitely different.

So I called the district to find out the routes.  "Your daughter is being picked up at 8:56 am at the New Stop (i.e. right by the house).  Your son will be picked up at 7:38am at the Old Stop (i.e. up the street, in Potential Dislocation Land)"

"Um... why are the stops different for both kids when I provided medical documentation last year for them both, stating that they needed to be picked up closer to home?"

"No. the documentation you provided was only for your daughter."

"No. I'm, pretty sure it was for both (but could I find my copy of the letter right then?  No.)"

"Well, you'll need a doctor's letter for your son.  ...you need one every year anyway because medical conditions change" -This made no sense because they had accepted last year's letter for Grace, but I kept my mouth shut on that point. Instead I said.

"This is genetic. It won't change. He was born with it; he'll die with it. But OK. I'll get a doctor's letter."

I hung up.

"I will die with what, Mom?"  (Oops! I hadn't realized that Joe was right behind me!)

"Ehlers-Danlos Syndrome."

"Oh. OK"

The phone rang a few minutes later. It was the district. They had found the original doctor's letter, and I was right: both children were mentioned by name therein. They would change Joe's stop to pick up at the same location as Grace's. I have to say, of all the offices I deal with in the District, Transportation are probably the nicest.

Unfortunately, the bus company is a whole 'nother story.

So day one of Middle school: Joe and I were out at 7:30. I wasn't sure if the new stop would pick up before or after the 7:38 stop down the street, so we went out early in case it was before (Joe, bless his little heart, had been all prepared: packed, washed, brushed and shined since about 7:10).

We saw the bus arrive at middle of the street and then turn down our street, away from our house, stop for a microsecond at the 7:38 pickup point and then take off in the wrong direction, away from us. OK maybe that was a different route. We waited just in case.

It wasn't a different route.

At 7:45am, with Joe wigging out about being late on his first day of middle school, which would -in his mind- start some kind of chain reaction to Armageddon; I loaded both kids in the car (poor Grace had been hauled out of bed early and asked to get dressed -just in case)  and dropped Joe off on time.

That afternoon, I waited for Joe's bus, which is about an hour ahead of Grace's. No bus went by my house.  I called the bus company. 

"My son isn't home yet. School finished a hour ago and I'm worried"

The lady was breezily unconcerned. "Oh the second wave of buses is just leaving his school now. He is probably on the second wave."

She clearly doesn't know anyone with Asperger's Syndrome. NO WAY was Joe on the second wave! I tried to explain this to her, but she blew me off as an overanxious mom.

Fuck YEAH I was overanxious! My kid was MISSING!

I started going through the elementary school phone book, trying to think of other people who would be on the same route and would have Middle school-age kids to see if these people had received their kids home OK. But the only person I found wasn't picking up.  I was about to call the district when the door opened and Joe walked in, out of breath and sweating.

I turns out, he had been on the first wave bus (of course) and when the bus had breezed by our stop, he had stayed on, thinking maybe it would go around the block or something. It hadn't, and as he got farther and farther from our house, he realized they bus wasn't going to stop for him. So not knowing what to do (although I have pounded "tell an adult" into his brain -apparently pointlessly -since he could vocalize),  he got off several blocks from our home and he ran back to our house, afraid that he was somehow in trouble for the bus's failure to stop.

*sigh*. That kids takes too much responsibility on himself. Apparently this is common with Autistic Spectrum kids.

So I called the district, thinking maybe they hadn't sent the paperwork to the bus company. They had. The lady said. "I even put 'medical' next to it in big letters, so they would know".  I believe her.

So I figure the afternoon bus driver can't or won't read.

You know, I just wish these drivers and administrators really understood the impact this sort of nonsense has on special needs kids. It may be a line on a list or a simple clerical error to them, but to the kid, the perception is (rightly or wrongly) that it is HUGE and potentially life changing. 

And somehow all their own fault.

Or their mother's fault.

Or both.

Joe spent quite some time stressing about the bus situation last night. I reassured him as best I could and told him that I would work with the district and the bus company to fix things, but like last year, it might take a few days to get it right (and don't get me started on substitute drivers, but I didn't go there). Joe got it -probably better than most kids would. "you shouldn't have to do that, Mom"
"Yes I should. It's my job. And if I have to stay on the phone all day to fix this, I will."

I really hoped today would be better than yesterday. As I made his lunch at 7am this morning, I wished and hoped that it would be.

We went out again at 7:30; waited, and again, we watched the bus come to the middle of the street, then turn away from our house. This time I was ready with my trusty phone in hand. I called the bus company, while frantically motioning for Joe to NOT run down the street, to chase a rapidly diminishing bus.  The bus company put me on hold for several minutes. Then they told me "a bus will be there in a couple of minutes to pick him up." Not YOUR bus:  A bus.  So they had screwed up. Again.

Well, but this time it was past Joe's 7:45 cutoff for having a meltdown. I hung up and he was pacing and flapping, all the time talking about fish:

"...so you had the fish and you just didn't reel it in. And in the meantime, I am starving and Grace is starving and you just won't reel that fish in..."

"What do you mean, Joe"

"it's an expression."

"I get that, but I don't understand the expression. What's the fish? Is the bus the fish?"

"Yes. ...No. I don't know.... Look, it's just an EXPRESSION!"

Joe understands about expressions and figures of speech. For years I have been telling him to 'keep his hair on", to "hold his horses" and that he is "on thin ice".  He understands this stuff a lot better than many Auties/Aspies his age.  But this making up of expressions is new to me and this particular autistic expression of speech is completely opaque to me; -to both of us, apparently. Maybe

he knows what he means somewhere in his brain. But I think he just got several metaphors mixed and I somehow ended up being the bad guy with a fishing rod and starving children.

And he managed to make it sound like that had been my sole ambition in life.

Eventually, an empty school bus arrived and stopped on the main road at the side of our house. I asked the driver: "Is this the spot where you will normally stop? Because the elementary school bus usually pulls around the corner out of the traffic?" The driver shrugged.

I don't know. I'm just filling in for the regular guy, who missed this stop." (Oh well, at least he was honest).

I walked back into the house at 8am, mentally exhausted.

I am now wondering what will happen this afternoon?  Where will Joe end up?

And I am also seriously considering the statement he made last night. "If I had a cellphone, I could have called you when the bus didn't stop. Maybe I need a cellphone, Mom"

Maybe he does.

I wonder if I could charge the cost to the useless bus company?

Lessons Learned in Washington

The kids and I took a vacation to Washington, DC last week.  Himself had to work, so it was just the three of us. I was apprehensive about taking a long trip with no adult backup, but they are both getting bigger now, and I have been feeling a little better, so I took a chance.

We Amktraked there; walked, Metroed and taxied around DC itself and made a few attempts to ride a double decker tour bus, with varying success.

Overall, we had a good time: only three meltdowns for the whole trip (one for each of us!) and no major incidents.  But of course, there were some lessons learned: A few little pointers or reminders that I will remember for the next trip:

1. When travelling with two Aspies and only an analog watch, one becomes quite adept at telling the exact time by analog. A German tourist looked surprised when he asked me the time, and I looked at me little Seiko and replied "4:42 ...almost 4:43".
2. If we are going somewhere, Grace asks the time roughly every seven minutes
3. ...unless she is nervous.  Then she asks pretty consistently every four minutes
4. Lesson: Make sure both kids are wearing synched digital watches next trip
5. When touristing in DC, I completely underestimated the advantage growing up in Dublin gave me for using the double decker bus. My kids could NOT handle the navigation and movement, especially going up and down stairs while the bus was in motion, whereas I was the lady with the cane hopping around that thing like I was born on it, catching stumbling children as I went. 
6. Because we saw about four or five homeless people during the entire week, Grace now tells everyone, in an outraged tone: "DC is full of HOBOs!".
7. Considering DC is the seat of our government, I think this is hilarious
8. The ticket booth in the metro does not sell tickets.  You need to use a machine to buy the tickets.
9. You also need to ask a kindly stranger to tell you how to use said ticket machine. Even if you have twenty years experience in the computer industry.
10. Fortunately,  there are a lot of kindly strangers in DC.
11. I had a good look at the casts of Abe Lincoln's hands. Although he was 6'4", and Marfan Syndrome is speculated for him, His hand's didn't look particularly Marfanesque to me.
12.  Seeing Night at the Museum, Battle of the Smithsonian AT the Smithsonian, in IMAX, was pretty cool.
13. Joe's bladder is the approximate size of a peanut 
14. Joe, in an apparent attempt to control or compensate for his peanut bladder, kept trying to hold it and wait for the last minute, which usually resulted in his HAVING to go at the worst possible time, like when were were finally near the front of the line, or the car/bus/train had just pulled off...
15. Sharing a hotel room with your two kids is a strange kind of lonely
16. When travelling alone with kids, Wet Ones are a requirement. Period.
17. Good french fries can cure a variety of ills, from motion sickness to the blues.
18. A child who had taken great care of a palate expander for months WILL accidentally throw it in the trash at the Natural History Museum
19. ...and only remember four hours later
20. The Natural History Museum generates a lot of trash in four hours (and no, we didn't get the expander back)
21. It is impossible to ground one kid and not the other when you are all in vacation and living in one room.
22. Joe is a slow walker
23. ....unless you give him a wheelie suitcase to pull, then he takes off like he has a rocket strapped to his bum (heavy work, maybe?).

Some notable quotes from the trip:

"You are acting more like a Camp counselor than a Mom"

On the way OUT of the Abe Lincoln exhibit, after seeing ALL the exhibits and the pictures of the conspiracy and after hearing the story of the assination TWICE on the tour bus:

 "Abe Lincoln was shot?  I didn't know he was shot!      ...who shot him?" (sigh)

"No we don't want to see the Star Spangled Banner. We heard the story already"

"Hey look! It's the Ruby Slippers from "Night at the Museum""

"So it went to the moon. Big deal!"

This trip was also a little experiment for me, to see how long I lasted without the computer and Internet. I deliberately did NOT take a laptop with me. This is the longest I have gone without a computer in 19 or 20 years.

I did great until Thursday morning, when there was a flurry of texts on my phone, and I realized someone in Ireland was trying to get hold of me (we go it sorted without a computer).

Other than that little start, I found the break refreshing.  I was getting a bit too immersed in the virtual worlds, and not spending enough time in the real world. Although I do fully intend to keep blogging, I have definitely cut down my computer time since returning.

Those Little Things We Say....

My sister had five children in as many years. So for several years,  her house was like some kind of cross between a daycare, a zoo, and an asylum. For most of these years, I lived in a different country so my main communication with her was over the phone.

So there we would be on the phone, chatting normally, when suddenly I would be deafened as my sis would break up a fight or something. Here is an example of what our phone conversations were like for several years.

Sis "...well, there he was, standing all alone, so I wen... GET OFF HIS HEAD!!!  YOU'LL HURT HIM(?)  GET OFF HIS HEAD NOW!!!  ...t over to him and sai...  LET GO OF HIS TAIL!!! NOW! HE'LL BITE YOU!!!  LET GO!!  RIGHT NOW!!! ...d "are you lost, luvvy?  Do you need me to help you find your mum?"

Yes. I was lost. And somewhat deaf in one ear.

I thought, after listening to my sis for years, that I was somewhat prepared for the kinds of things you say when you have kids. I also made sure I had a cordless phone and many handsets, which definitely cuts down on the yelling aspect (In fairness: my sis didn't actually yell that much normally, but while on the phone back then, she was tied to one location).

Today, as I found myself calmly telling Grace "don't suck the cat's blood" I realized that yes, there are definitely some phrases that pop out of my mouth; some combinations of words that I NEVER thought I would say in that order, and it makes me shake my head. Or smile. Usually both.  And sometimes the things I say make me wonder if I have been transported into some kind of bizarro world, or am somehow the star of my very own "Truman show"?  The "cat's blood" thing was totally innocuous, BTW. They were playing a vampire game, and poor George had been designated a 'victim'.

Now, I had expected some strange expressions to come out of my mouth. Here are a few I had expected (and got):

• We don't bring worms/ bugs/ snails/ dead birds into the house"
• We don't run out into traffic
• We don't threaten to kill our sister/brother.
• We don't pick the neighbour's flowers, not even as a gift for Mom.
• We don't go visiting the neighbours without permission (Grace)
• No. You may not drive the car
• See! I TOLD you Teddy can't go in the bath!
• This is what happens when you don't put your gum in the trash!

...and then some things I NEVER thought I would ever hear myself say; especially not in the calm, matter-of-fact voice I perfected about a year or so after Joe's special needs became apparent.

• We don't growl at friends/ strangers/ anybody
• We don't attack other kid's moms (/dads) in the zoo  ...Or anywhere, for that matter.
• We keep our clothes and shoes on in the restaurant, please
• We don't sniff the pizza delivery guy
• We don't tunnel behind the boxes on the supermarket shelf  (I distinctly remember wondering where Joe was, and then when looking down the aisle, I watched a progression of cereal boxes fall off the shelf, one after another, away from me, allowing me to track his progress down the back of the shelf. He was pretty fast! There was a long line of boxes by the time I got to him.)
• Do you always pick on disabled four-year olds? Or have you waited your whole life to meet your intellectual equal? (this to a man in K-mart, who was being mean to Joe.  ...and that one wasn't said in a calm voice!)
• Please don't sniff the food you are given in Kyle's house. His mom's feeling might be hurt.
• What show is that from? (this in response to a clearly echolalic utterance) 
• You need to tell people who you are when you call them on the regular phone. it's not like Skype.  They can't see you.
• No sweetheart. Zombies won't get into the house while we are sleeping. The alarm is set.
• I know the guy was fat, but you can't say that to his face.  You have to use other words, like 'big" ... better yet: Don't mention it at all...

...and there are a few non-parenting-related  phrases I never thought I would hear myself utter, either.

• "Don't call 911. It's only been 40 minutes" (since the seizure began) Don't try that one at home, kids.
• "I think we can get it back in. Just pull my arm straight out -don't twist, whatever you do.  On my count..."

I'm sure there are many more, but I can hear the kids start to get wild in the background, and I suspect I will have to go and use some of my phrases in a minute.

What about you?  Are there any particular phrases you never thought you would use that stand out in your mind?

Ode To Joe

I wish I had the video to accompany this story, but apparently the kids were supposed to bring in a tape on the day of filming in order to get a copy.  They didn't think to tell me this.  They didn't think I would want a copy. More likely, they didn't want me to have a copy.  Either way, I am stuck, now. Opportunity missed.

*shrug*

Kids.  What are you gonna do?

Backtrack a bit:

Joe and Grace took a course in TV and radio at summer school this year.  I was a little concerned about them being in the same class, that they might cling to each other and wouldn't mingle with the other kids or conversely, that they would fight (or both!). I instructed them to stay separate and be individuals.

In hindsight, maybe this was a mistake.

Most of the work involved in making little commercials or movies is team work.  Joe doesn't do well with people he doesn't know well, and some of the kids tried to take advantage of him ("Mom, I would rather be back in elementary school and bullied by M than in Summer school being bullied by K. At least I'm used to M."). 

He struggled with each project.

By the time they got to the last project, a music video, Joe was on his own. No-one volunteered to work with him, and he didn't know how to ask to be included in any group. How do you make a music video with just one person? (I was oblivious while all this was going on BTW. Neither kid told me. What happens in Summer School stays in Summer School, apparently. I found all this out after the fact.).

So Joe come home from school.  "Mom?  Can you put the 'OIde to Joy' on my iPod?"  All the other kids were singing or dancing, and he decided -all on his own- that his video was going to be just him conducting the "Ode to Joy" to camera. I thought it was an excellent idea.

We watched some You tube footage of conductors, starting with Rowan Atkinson's "The Conductor" (did you ever notice that Rowan Atkinson is hypermobile?), I thought he could play it for laughs (Joe is naurally quite funny), but Joe decided that he was going to play it straight and I respected that.

He went in on the day they shot the music videos, all dressed up in the suit that we had bought (but he hadn't worn), for elementary school graduation, and despite dropping his baton (a chopstick) once during the shoot, he stuck with it and did it. 

I went in today for parent's day, and  saw all the films the kids had made, and -although I know I am biased, I thought his conductor music video was the most memorable one there. 

I'm well proud of him.

Teaching Moment: Missed

Joe came to find me: "Mom, there 's a strange animal on the tree. I think you need to look at it."  We looked at the tree -which is too close to the house- out of the downstairs window, but the animal was not in evidence. So we went to Joe's room directly above.

I couldn't see anything. Eventually, he directed my eyes to it with very detailed directions:  "Look on the right side. See the bottom branch? Look down from that. There is a bump and then the animal is below the bump".

I realized that he was looking at a piece of discolored bark.  "Joe. You need to go and get your glasses, then look at this again".

"No, Mom. I'll go outside and point it out to you."

"No.  It is too high. It will be easier if you get your glasses".

"I'll climb on the fence and point to it".

"No. That's dangerous..."

So after some arguing and complaining, he got his glasses and looked again. The "animal" immediately resolved into a piece of discoloured bark.

"Oh. It's a piece of bark!"  And he got very angry.

"I wish everyone in this house had my eyesight!"

Being the only person in the house with good eyesight, this stung me probably more than it should have. I was hurt. And knowing I was walking away from a large teaching opportunity about sight, vision, perspective or something; instead I left the room without another word.

You can't teach angry. And you can't be impervious to everything they might say. Not all of the time, anyway. 

I'm only human.

Maybe the opportunity will present itself again another time, when I am better equipped to take advantage of it.

Eleven.

Joe turns eleven today.  Crumbs!  Just recently, someone was talking about the post I wrote when he turned ten.  And now it is time to write another one. The years are going by way too fast.

I don't know where to start. It has been quite a year for Joe.  He just completed elementary school, having spent the last two years fully mainstreamed.  I attended three school shows in which he sang and sang/danced: Two chorus performances and the school production of "Grease". Although stressed,  he handled all three very well.  I, on the other hand, cried more than I had at my Da's funeral. At each performance!  Grace oscillated between concern for me and rolling her eyes at me.

Joe gave up Judo this year, which I was bummed about. He had been doing well with it, but a couple of minor injuries and a major meltdown caused him to throw in the towel.  He is going to try flag football next.  And track.  I'm sure we will find some kind of sport that he will like. (I believe sport in important for many reasons, which I will get into another time). He has also expressed an interest in fencing, but the idea of Joe brandishing a long object through the house is kind of terrifying to me. Maybe I should just get over myself and let him try it.

Joe has grown tremendously this year. He is able to identify and voice how he is feeling much of the time, which is new for him. Just yesterday, after returning from the dentist, we found the house alarm screaming and the back door standing open. The police had been called already, so I reassured the kids that there were no strangers in the house (after I checked!), set everything back to rights  and acted like everything was normal. The policeman was very nice and didn't stay long.  However, as the cop was walking out the door, I saw Joe's head pop up from behind a chair.  I thought he was still scared of burglars and told him that there was no need to hide; that we were safe.

He came to me about five minutes later:  "Mom. I'm scared"  He went on to explain that he had been afraid the policeman would arrest him!  I set him straight, of course. But I was very proud that he was able to identify and express his emotion and then to come to me for help. All three of these are very important skills for a person on the Autistic Spectrum and they are all newly emerged in Joe.

Joe has been thinking about friends a lot too. Sadly, just as he was starting to appreciate that his buddy from next door has been a constant through his life, we learned that the family will be moving out of state very soon.  That's a tough blow. However, I think the timing is opportunistic; with Middle school starting, there will be more opportunity to meet new friends. I really hope that happens for him this year.  I think he is ready. He has grown a huge amount in the past year. I hope and expect him to grow a lot more in the next year, now that he is eleven.

ELEVEN!  Mother of God!

I'm not ready...

Processing...

So Joe has been trying to come to terms with all I have told him recently, about having Asperger's syndrome and being different.  I can see the struggle in him sometimes and I feel bad.  He has made a few comments, too and asked me questions he has asked before like "why are you always pushing me?" and "why do I have to have Speech Therapy(/Summer School/resource room/etc)?".  However, he is now asking them with a new, negative twist; something about those three years he regained, as if he didn't have to do any more work because he regained them.

I had been afraid of this, so I decided to have A Talk with him to clear up any misconceptions. Because it was obvious to me that there were a few.

It emerged during the course of our talk, that Joe thought I was trying to "fix" him.  To somehow 'cure' him of his "Joeness"  and turn him into a normal kid.  That broke my heart for several reasons. First of all, I figured Joe must have thought that I thought he somehow wasn't 'right' or up to par. In other words;  Joe felt rejected by me.

And the other reason is that this is the age-old problem of an Autistic Spectrum disorder. That people with Autism feel that the normies are out to make them one of us. I tried to set Joe straight on both points

Except he wasn't getting it.

Finally, not knowing what to say, I blurted out "You're not mine!  You are your own person. I have only borrowed you and it is my job to prepare you for the world.  I don't want you to come to me in 20 years time and say that I did a bad job because I didn't make you ready for college or for dealing with people.  Do you understand?  It is my job to prepare you for the world when you are a man."

 And we talked a lot more. 

One of Joe's concerns (Renee, you will appreciate this) was that he was afraid that the more he progressed, the more he would lost his "gifts", most notably his synesthesia.  I told him that if Synesthesia is going to leave him, it will leave him anyway (many people outgrow it in puberty)  and refusing to learn other skills for fear of losing synesthesia might backfire and he could lose out twice.

And we talked about Asperger's Syndrome. Joe had two concerns about this:

His first concern was that it might get "worse" like when he first "got" it (i.e. when he had his huge Autistic Regression at 19 months).  I explained that this was very highly unlikely, unless he was poisoned or something (by mercury.  ...and yes. I am one of those parents, but not militantly).

His other concern of course, was the flipside of this coin: That he would lose his Asperger's syndrome, which is very much part of him and one of the things that make him "Joe".   I explained that he would always have some Asperger's syndrome; - it doesn't go away, and he would always be Joe.  

We talked for a long time: We talked about school, college, jobs, friends -both regular and "with gifts" (-Joe's term meaning "special needs").  I explained that learning to interact with regular people, which he will need to do in his adult life, will not make him a regular person. It will make him a person with Asperger's who can deal well with regular people.  That kid is a very deep thinker and capable of understanding some very mature concepts (I do simplify the language). He amazes me. 

I think he felt better after our talk, although I know we will need to have another talk soon, and many more in the weeks and indeed, the years to come.