Saturday, May 30, 2009

Realistic or Cynical: A Mommy's Dilemma

This is going to be a long, involved, multi-story kind of post, so bear with me and forgive typos. I'm tired, and the more tired I am, the worse my typos are!

A week or so ago, we had Jaymes' IEP Kingergarten Transition meeting at the school. It was pretty much just to change over the paperwork, but now that I look back I really wish we had had more than ten minutes. With Jaymes' IEP's, I feel like even if it's a small change, it's deserving of a full review and discussion- not 10 minutes. However, this time I was good with that. I'm sure if i had disagreed, they would have been willing to accomodate, but I didn't ask. My fault, not the school's.

We decided placement at this meeting- a self contained Autistic classroom at the same school he is now. It seemed logical to me, that a self contained classroom would be the least distracting, most effective learning environment for where Jaymes is, both academically and behaviorally. A big part of that decision was based on the feeling that there was no way in hell the school would give Jaymes an aide to help him be in a "normal" class. I still feel like that's unlikely.

Fast forward to yesterday. Pre-K granduation, and the cutest little "ceremony" you've ever seen. They had us sit in chairs and the kids sing and dance. They did the chicken dance and a bunch of other dances. One dance parents had to do, and it was really funny. I didn't really do it, I'm really self conscious, and just can't make myself do that stuff. If Jaymes would have cared, i would have done it, but he was too busy avoiding dancing himself, and trying to get to me in the chairs. The whole time he sidled closer and closer to the chairs, would be called back, and do it again. He didn't dance or sing at all, but it was ok. I didn't expect him to. He stood there and watched his classmates, and at some points chanted "no! no! no!"

-Putting in video here. If you're the parent of one of the kids in this class and take issue with their being on this blog in the video, please email me at amber @ dontbitethedog dot net and i will remove it immediately. Otherwise, i'll assume no one cares-

Some of the singing:

Jaymes and peer interaction.. always interesting.

Each kid got a little gift bag and a certificate, it was really nice. His teachers did a beautiful job. It was a great way to celebrate the end of Pre-K for some, and just celebrate the accomplishments of the kiddos still staying in pre-K.

While we were there, the "more at four lady" (whose name I ALWAYS forget) approached me, asking if i'd gotten the flyer for an event the next day. No, I hadn't. I'm glad she mentioned it.

So I went this morning. It was a workshop held by an ECAC person. I can't remember what ECAC stands for, but they are the go-to guys for all things education for kids with special needs. They know the laws, and the in's and out's of IEP writing. I'm thrilled I went, because i got a lot of info, and some different viewpoints on things.

Unfortunately, this brings me to the dilemma. The speaker had a somewhat biased (her words, not mine) view regarding self contained classrooms. She brought up points I had not considered, and just got me thinking in general.

When I made the decision to have Jaymes in a self contained classroom (they don't even eat lunch in the cafeteria, they stay in their rooms), I wasn't thinking of anything except that it would be an easier environment for Jaymes to focus in.

The Pro's:
  • Smaller class size
  • TEACCH trained teacher
  • Lower expectations, and a higher level of understanding than I felt he would get in a regular ed classroom
  • Quiet, easy place to concentrate
  • More one-on-one instruction
The Cons:
  • No "typical" peers to learn from
  • No time outside that classroom
  • Lower expectations
  • He wouldn't need to learn to function in a "real" environment, he'd be in his own quiet little "fishbowl"
  • Completely segregated from "regular ed" kids
When I started thinking to the future, not just this school year, I realized something. I realized that for Elementary school, I'd be ok with a self contained class, because he would still be in a regular school. But if we kept him to that path, it seems like it would become harder and harder to mainstream him later on. I do NOT want him going to a school like Carter Vocational. DO NOT. Unacceptable to me. Unacceptable for Jaymes. But if we keep him only in self contained, disability oriented classrooms, doesn't it seem that we're setting the stage for a lifetime of special classrooms? At what point, in this scenario, does Jaymes transition into normal classes? I don't know if he ever could.

My concern, however, is that the other option (regular ed classroom) is ONLY workable with a one-on-one aide. Everything would depend upon whether the school would agree to this, and I don't know that they would. I'm afraid to gamble on it, this is my child's education. I don't want to mess it up.

I feel kind of stupid, too, for changing my entire outlook on this based on one 2 hour workshop. Am I being ridiculous?

My thoughts are... An ideal situation would be letting Jaymes go into a regular Kindergarten classroom, with a constant 1-1 aide who could keep him on task, help him with work, etc as needed. He would need someone with him 100% of the time, or he'd just drift off and wander the classroom. Maybe let him go out of the classroom for speech and OT. Don't know how cafeteria time would go, but I think with help he could handle it.

I don't want him to be separated from his peers. As it is, their differences are obvious. But in his current class, he is loved and appreciate by his "typical" peers. they help him, they watch out for him, and they don't mind when he ignores them. Jaymes walks into the room late one day, and is greeted by a chorus of "JAYMES! Hi Jaymes!!!"

They're not deterred by his silence or his odd little stims. They don't expect him to talk, but they like him just the same. I am scared of kids in a regular ed Kindergarten class making fun or bullying him, but at the same time I want him to have friends like the ones he has now. true, it's not a friendship like normal- they don't play and talk and all that. But Jaymes is liked. It seems wrong to take him away and shove him into a separate class, where all thye kids are just like him. When I observed the AU class, I noticed that none of the kids paid any attention to the others. jaymes wouldn't be forced to be social, and rather than picking up speech from his peers, he'd pick up their stims and their behaviors.

I'm really very ashamed of myself for not putting more thought into this transition. I went into the meeting entirely unprepared, and I'm the one who suggested the self contained classroom. I didn't think it through, and I feel very silly and stupid for now changing my mind AFTER all paperwork has been completed. It took hearing the ECAC person's explantion of "Least restrictive environment" to get it through my head and get me thinking. I need to be better.

I blame part of the dilemma on my way of thinking about Jaymes. I don't know whether I am realistic, or cynical in my estimation of Jaymes' abilities. I don't know if my expectations of him are too low, if they hold him back and prevent him from reaching his full potential. I assumed he should go into a self contained class because he is different. To me, watching a "typical" five year old talk and play is very hard. The differences are astounding, and seeing those differences gets me down.

I think I do underestimate what Jaymes knows and understands and is capable of. It's wrong, but I do it out of a desire to protect him from a world that is cruel to those who are different. But regardless, I'm wrong.

So now I'm faced with a dilemma. After thinking it over, I want to try and get Jaymes into regular classes, with an aide to help him keep on task. I want him to learn to function in the real world- not a self contained bubble where, while I know he'll be safe from teasing and work that is too difficult, he'll never learn to be social. The social skills are so much more important than the academic goals, to us. Writing your name is great, but being able to handle sitting in a room and play with other kids is priceless.

I imagine the school people will think I'm an irritating moron for changing things up on them. I feel immensely guilty for it. I feel really stupid. But how I feel isn't important, Jaymes is. So I guess we'll see where we go from here.

Monday, May 25, 2009

Mommy vs Machine

.. is an epic failure.

Ok, it's not that bad, but I'm frustrated. We got Jaymes long awaited Vantage Lite last week. But first, here's why my post might not make total sense.

I'm not all here this afternoon. Echo the dog had doggie diarrhea ALL over my house last night around 2am. I woke up from a dream about poop (I don't know, must have been the smell messing with my subconscious!) and realized the smell was NOT the dream, and tiptoed to the light switch in the dark praying I got the lights on before my feet met those godawful brown puddles. Thankfully, for once I was successful. Cleaned up the horrible, terrible, foul smelling mess and put the offender outside to squeeze out whatever nastiness was left in her. She took all of 2 minutes to run back inside and leap into bed with me again. I'm surprised she didn't wake me up getting out of the bed when she originally had her accident, and wish she had so i could have prevented at least some of it. Went back to sleep with the blanket over my nose to block out the lingering poop smells. Ick.

Now, back to the super-complicated-mommy-hating-machine of DOOM. It's actually really, really cool. Jaymes is still learning to use it, but he is getting better. He can request a cookie or a cracker with no trouble whatsoever, which is great on one hand, but on the other means we're out of cookies and I cut off his cracker supply.

The thing has a zillion different keys and functions and it's beyond complicated. I mean like brain surgeon complicated. Like Jaymes Speech and OT's only able to do certain things with it complicated. I get the feeling one needs a PhD in order to really understand how the thing works and get it programmed just right. I considered myself pretty technologically savvy, but the Vantage has blown my mind. I'm not THAT talented.

I can turn it on. Thanks to the Speech Therapist's cheat sheets and programming, I can get to where Jaymes can have it do a few things. Here's a list of what he can do with it:

-Ask for different foods
-Answer "what's your name"
-Ask for a drink
-Tell me to "stop"

It's really neat too, when you ask him his name, he pushes the button that says "My name is Jaymes" out loud, then he thumps his chest and says "My name Jay!"

The things you can do with this device are really endless, however at the moment no one knows how to do some of the things I'd like to do with it. They (the speech therapist and OT) said they can get someone in to train me on it, which is good. Hopefully that doesn't take too terribly long, I'd like Jaymes to be getting more use out of it. Things I want to learn to do, or fix/change on it:

-Delete out the keys with food items Jaymes doesn't eat (lobster, pad thai, weird stuff)
-Delete out unnecessary keys for now (the "I hope" or other more.. language oriented stuff...etc)
-Upload photos of things Jaymes commonly requests or uses to have instead of the pre-loaded icons
-Get rid of the activities Jaymes doesn't do (Play UNO, read a book, sing a song)
-Simplify how Jaymes gets to requesting items. For example, for food items, right now he has to press 3 keys to get to the food menu. The icon for I, the icon for want, and the food icon. Then he has a bunch of submenus he can choose from (lunch, dinner, chinese, drinks etc) that is really too complex for him. What I'd like to see is this:

Press the icon for "I/me"
Press the icon for "I want"
Press the food icon

A page comes up with the basic foods he most commonly eats- the ones I can guarantee are in the fridge. It would have yogurt, hot dog, hamburger, ravioli, banana, etc. Not a whole lot. Maybe a submenu for snacks and one for drinks.

And on the subject of the drinks... I hesitate to even use it with him at the moment because despite his loving to use it, he asks for Pepsi every time. It needs to have everything but water, juice, milk, and iced tea taken off. Jaymes doesn't need wine, LOL. Or soda. Nooo.

Anyway, I have not done any horrible damage to the thing yet, though I did accidentally reset it to factory settings and had to go back and fix everything I deleted. Now I'm kind of afraid to mess with it. If I break it, I will forever be known as the moron who broke her kid's communication device. Go Amber.

I'm looking forward to learning how to use it properly, and being able to customize it to Jaymes needs without fear of erasing everything. It frustrates me to have to wait and try to work around the things that make it harder for Jaymes to use, but somehow I imagine I'll survive. We're just so lucky we even got one. I think it will make Jaymes' daily living so much less frustrating, and in doing that, it'll make mine less frustrating too.

Oh, and school AGREED to use it, it's in the IEP. You know what else was discussed too? A BUS AIDE.

I love you, Mrs. Williams. And the wonderful speech therapist @ school too.


Oops, I forgot to add in my ambitious plan for my website. Super secret plan to get a LOT more traffic over there. I've scoured the internet in search of parent-friendly videos on using and programming the Vantage Lite. There are none. Literally, none. There are 2 on Youtube that show you how to do things with a bluetooth phone. Useless to me. There aren't even any parent-friendly TEXT guides or cheat sheets. Spo once I know how to use the sucker, I'm going to put together both video and text cheatsheets and lessons on how to use the thing. i figure if I am having that much trouble finding any help with the thing online, then am lot of others are too probably, and having the monopoly on that search criteria will jack up my site traffic.

And help my fellow parent, of course.

-Innocent face-

Friday, May 15, 2009

Lazy Friday

Got a lot to do, including heading up to Child Support in Winston to get an inter-state case started against Jaymes' sperm donor. He's been avoiding the NC CSE lettes, so now they'll serve him with papers.


One day.


It's only taken them a year so far. What have they done in this year?

1. Made Jason get genetic testing to make sure he's not Jaymes dad. Duh, did it, he's not. We know who his dad is for god's sake!
2. Sent 2 letters.

Yes, in a year. The new caseworker seems really nice, and she explained everything to me, which is a lot better than the previous one, who scolded me for even asking.

Anyway, busy day. But here's some good reading on the Oprah/McJenny debacle

Thursday, May 14, 2009

Jaymes, Jaymes, the musical fruit...

No, this isn't actually a bodily function related post, it was just stuck in my head and I thought it would make an excellent title. What can I say, I have a very juvenile sense of humor. That comes with the territory. The territory being Jaymes.

Yesterday, courtesy of my little lovemuffin, we had a couple of near-death experiences. My life did not, however, flash before my eyes like a lot of people. I was too busy shooting lava out of my eyeballs at Jaymes to do speed-reminiscing about the last 23 years of life.

We have car issues. By We, I mean Mr. Jaymes and mommy. He doesn't do this stuff with daddy. With daddy, the worst thing he will do is unclip his seat belt, throw his booster seat on the floor, and lay on the back seat. With mommy, it's a little more extreme. I think that's what I'll call driving Jaymes to therapy on Wednesdays (or any time I drive him somewhere and it's just me and him): Extreme Munchkin Delivery. Because really, what other word does justice to the jumping, window opening, shoe tossing, wheel grabbing, button punching, gear shifting tornado that is my son?

Since clearly you all want the hairy details, I'll try and recount our adventure yesterday. At least, the parts I haven't lost to dissociation due to Post Traumatic Stress. Ok, I'm being dramatic. We COULD have died, but yeah, it wasn't that close, nor that traumatic. I'm getting used to every drive being a 50/50 shot of coming home alive.

Before I begin, let me tell you about the state of NC and their idiocy. Last year, there existed a program through Medicaid, that paid for car restraints for special needs children. We got an EZ-On Vest, which is basically a harness made of seatbelt material. It zips around your child, with two straps that go between the legs, and hooks at the back to a mount in the back dash of your car. The child then sits on a booster seat, with the seatbelt buckled over the lap. MOST kids, no matter have slippery, stay in this. Jaymes sort of did. He stayed in the harness when it was kept super tight, but he did not keep the seatbelt on because they didn't send the seatbelt button cover thingy. Eventually, some bright soul stole the damned strap that held Jaymes by the harness to the car, and so we've had a useless harness ever since. (by the way, if you need one and have a small child, 25-35 pounds, I've got one I'll sell for a lot less than they retail for). The replacement strap is EXPENSIVE. Normally this wouldn't be an issue- except that this year, Medicaid cut the funding. So apparently, the state of NC would rather pay the thousands and thousands of dollars of care a child who has gone through the windshield will require, rather than a couple hundred for a preventative device. Ok. I won't even start in on the lack of logic there. Or at how upsetting it is that these companies can take something it probably costs $25 to make, slap the words "medical equipment" on it, and sell it for $400-600. The whole EZ-On Vest setup would have been $600 w/out insurance. The little screw that held on the mount on the car was $100 alone. The harness? $400 or so. It's been awhile, but I remember being shocked at the prices on the invoice.

Anyway, now that I'm totally off on a tangent here... Yesterday was OT day. We have a late afternoon appointment, so we usually take off around 4:45 to get out there in time. In the past few trips, Jaymes had been taking off his seatbelt and wandering the back seat aimlessly, knowing I couldn't do anything about it. I have a serious phobia about pulling over on the highway, the cars come too fast for me to ever be able to pull back in. I don't want to get rear ended.

This trip started out like all the rest, Jaymes in his carseat in back with his giant stuffed snake, his filthy pink blanket, his rag of what was once a stuffed horse, and his theraband thingy tied to the back of my seat for him to yank on, chew on, whatever.

All this lasted him about 5 minutes. Driving down the road, suddenly a little head pops into the front seat, and Jaymes leaps into the passanger seat. I pull over, into a parking lot. I think to myself "ok, I don't want him doing that on the highway, and maybe I will have better control if I keep him up front with me." The airbags up front turn off when there isn't enough weight in them, and Jaymes, his toys, and his carseat do not trigger it on. So it seems relatively safe. As safe as having a kid in the front can be, at least. So, Jaymes gets buckled in, and off we go. He plays with the radio, but that's the worst until we've been on the highway for awhile. At 65 MPH down I-40, Jaymes decided it was time to make the drive more exciting.

He shifted. How he knew to hold the button down, and then shift, I don't know. Thankfully he shifted us into neutral, if he'd done park or reverse we'd have been toast and so would my transmission. I wonder if the bumper-to-bumper warranty would have covered that. Hmm.

Back to the story. Put the car back into drive, and slapped Jaymes' hands away from things. He giggled, and kept on trying. So I drove most of the way with one arm pinning him to the seat, hoping not to get pulled over, or worse, to die a painful, flaming death. He settles briefly, so I let him go. next thing I know, shoes are off, and window is opening. Sock goes flying out into traffic. Glad it wasn't a shoe. Or a big hard Elmo toy. I bellow at him to shut the window, he does so, giggling. I pray he doesn't try to open the door. Unlike the back seat doors, the front can't be child locked. He knows he can't open the back ones, and thankfully that carried over to the front too. Every time his hand moved toward the door, I screeched at him. It startled him for a few minutes, and that's about it. he thought the whole trip was a barrel of laughs. He doesn't understand that he could kill us doing this garbage.

We made it, in one piece, to the therapy place. I resisted the urge to drop Jaymes off in front of the building and jet off, and we went inside. I'm guessing my face was still bright red from the yelling, flailing panic that had been the trip there, and I'm sure his therapist thinks I'm even more nutty than she already had. On the plus side, she took the situation very seriously, which I appreciate. It annoys the heck out of me when people make light of a major issue.

Jaymes went to the bean table, therapist gave me an activity too. I have to say that cracks me up- I think it's awesome. I love that therapist, she's very creative in how she does things. Anyway, she gave me some of that plastic lace stuff you make keychains out of at summer camp. We called it "boondoggle" back at horse camp in upstate NY, I don't know what you call it in the south. Plastic lacy stuff? Therapist showed me how to do it, and set me to making a chew toy for Jaymes. It was actually very calming, which I needed, and a lot of fun. I remembr loving those things as a kid. Jaymes thinks it's pretty nifty to gnaw on too.

The therapy session went well, as usual. Jaymes actually ate some strawberries, blueberries, and apples. He was a little bit stubborn, but she handles him perfectly. Found out that Jaymes long anticipated speech board thing should be here in the next couple weeks- yay! Very exicting. Now comes the fight to get the school to go along with it.

The drive home was not bad. A new Theraband thingy tied to the handle on the top of the door amused Jaymes. He punched a couple buttons, but thats it. Thank goodness, my nerves were about shot, and I was really nervous about how he would do coming home. Good Jaymes.

You guys know me, if I'm not laughing during the fact, I will be soon after. Being Jaymes' mom has given me the ability to laugh at EVERYTHING. Looking back on it, I'm sure we'd have made a funny spectacle. God only knows what the people in the cars around us were thinking.

An evening of heart attacks, giggling, and summer camp crafts. Life is good. Autism can make things more difficult, but it always makes it more interesting.

Video: Jaymes coloring with sidewalk chalk and talking lots! He says his name a few times, says green and blue, and Sierra has to make an appearance.

Monday, May 11, 2009

Diagnosis: The End, or a New Beginning?

I originally started writing a pretty random, rambling post for you all to be confused by, but halfway through noticed that I was talking about diagnosis. And the weather. And ducks. I'm not sure why, Jaymes was diagnosed a very long time ago. The weather is rainy. There are no ducks. Go figure. I guess it's just on my mind.

Jaymes was diagnosed November 11th, 2005. It was a rainy day, and we had an 8am appointment. I was sleepy, Jaymes was not. I do not recall Jason being there, I think he was at work. The testing was your typical, slightly informal assessment. An OT, a SLP, and a Developmental Pediatrician were present, as well as our Early Steps coordinator. We were in the little playroom at Early Steps HQ. Early Steps is the name for the Early Intervention program in the state of Florida, by the way.

Jaymes didn't want to play. He wanted to crawl away, or scream. He ignored the doctor's attempt to get him to hold two blocks and bang them together. He crawled under a chair and stared blankly at the wall. He made no eye contact, he flapped his hands. He was stonily silent except when touched or when pushed to do anything at all. Then he was tearful, screaming like he was being devoured by mountain lions.

Jaymes was almost two years old. He couldn't hold the blocks, he couldn't walk well, he couldn't do a small puzzle. He wouldn't make eye contact or interact in any way at all.

It wasn't hard for everyone to reach a consensus. It was pretty obvious, even to me. Jason didn't want to believe it, and had brushed off my concerns about there being anything wrong. My mom had mentioned autism, and we both brushed it off. He was fine, just a little bit of a late bloomer. Then I started researching, and I knew. I'd known before this assessment, which is why it really was no more than a formality to me. At 1 1/2 Jaymes had every major sign of autism. He toe walked, he hand flapped, no eye contact, wouldn't eat much, screamed most of the time, was very withdrawn and serious, rarely smiled, started to babble at 6 months then stopped. He spun in circles, he craved sensory input. There was no overstimulating Jaymes, lights and sounds and movement were like a drug to him. They calmed him, comforted him. They still do, actually.

The team seemed a little surprised when I responded to their carefully phrased explanation of the testing results and his diagnosis with "I'm not surprised, thanks for your time!" I'm pretty socially awkward, and most of the time what comes out of my mouth in no way manages to convey the right message. I always end up sounding like (A) an uneducated hick or (B)a clueless moron or (C)Like a stammering nutball who has had a few too many drinks. Jaymes and I share in our lack of social skills I guess. I prefer him to the majority of people I meet anyway.

Anyway, a lot of people thought it was odd. They expected me to cry and sob, and bemoan our awful fate. After all, autism isn't curable, it's a life sentence. But I guess I didn't think of it that way. It didn't change how I looked at Jaymes, nor who he was. I'd like to say autism didn't, and doesn't, define Jaymes and us, but I'd be lying I think.

Autism does define us, to a point. When Jaymes is making a ruckus at Walmart and someone demands to know why I'm not slapping my brat to teach him to behave, I explain that he has autism. I use it as an excuse in a lot of cases, because that's what people understand, that's what is simplest. Autism tells us where we can go, to a point. We rarely, if ever, take Jaymes to the library. I avoid taking him to the post office, or anywhere with long lines. But, we always include him in daily living activities. Yes, he'll scream at Walmart, but we need groceries, and he's part of the family. We ride it out. Autism tells us what to do. We wear belts, because Jaymes gets upset if we don't. We do things in a certain way, at a certain time, in a certain routine. Autism tells us to. Jaymes appreciates it. It works.

Autism changes things. When you're pregnant, you imagine a perfect little kiddo who will grow up doing playdates, playing the piano, getting A's at school, going to med school, and becoming a success. I never imagined that my idea of a success worthy of celebration would be the day Jaymes held two blocks and banged them together at age 3. Or the day he called me mommy, at age 4. Or the first time he ate a banana without spitting it across the room and covering his eyes, at age 5. I never pictured scrubbing poop murals off his bedroom walls as a typical morning chore, nor did I expect to be buying diapers for a 5 year old. I didn't know every trip to Walmart would be humiliating.

I also didn't know how much patience Jaymes would teach me. Or that he would push me to be more assertive, to fight for what he needed. I didn't know that one little boy could push me so far above what I was, to become a parent who is actively involved in her child's life, therapy, school- everything. He has taught me to stop being shy and awkward and just do what needs to be done. He has taught me to see the beauty and humor in every situation. He's taught me to laugh like a fool when I drop any entire bowl of chocolate pudding and it splatters every inch of the kitchen, and he's taught me that even in a messy, choclatey situation all one has to do to make it worthwhile it sit on the floor and grab a handful of pudding.

So no, life didn't end for me when Jaymes was diagnosed. It changed. I didn't cry, but I know people who did. We all react differently. I took it for what it was- a fact of life that wasn't going to change just because I was unhappy about it. I didn't obsess over the cause, I chose to focus on the future instead. It works for us, might not for others. I don't hate autism, but I do not love it either. I'm at that point where matter-of-factness meets autism acceptance. I accept it, I'm ok with it, but I don't tout it as the best thing to ever happen to us. It is what it is. We go day to day. Sometimes it's great, sometimes not. Sometimes smelly, sometimes amazing. Poop is poop, nothign grosses me out anymore. Except spit, but that's a whole other blog post.

Friday, May 8, 2009

Well kids, it's like this...

Every now and then, my neighbor lets her kids come over and see my horses, or play with the kids in the backyard, or whatever. It's a rare thing, and I really enjoy them because they're super-nice kids and it's fun to have kids around who talk in a way that I can actually understand. Plus, the little girl loves horses and is always eager to talk horses with me. They came over a few days ago to see the baby Moal (mule foal= Moal, don't ask!) and once again the issue of explaining Jaymes came up.

How do you explain autism to a child? How do you explain it without it coming off as disparaging toward your own child? How do you do it in terms the kids will understand? How do you do it in that PC way?

They wanted to know how old he was, I forget how it came up. He's 5, I told them. Their little brother is just turned 6, and he talks like you and me. Ok, well Jaymes doesn't. Why doesn't he talk? Why does he wear diapers? Why does he not have homework from school? Why does he sit in a harness on the bus? Why does he hold their hands? Why doesn't he play games with them?

There are lots of ways to answer those things. most of them suck. As I'll illustrate here in a second.

Answer #1: Jaymes has Autism. The downside: The kids don't know what that means. Most adults don't know what that means. I know what that means, and thankfully the people I'm around most (the other parents at the therapy place) know what it means. However, as a response to a kid, it's out.

Answer #2: Jaymes is different than you. He does things his own way. The downside: I don't like pointing out Jaymes differences so pointedly. It seems offensive. Saying he does his own thing implies a lack of parenting, altohugh these are kids so they probably don't a hoot about my parenting. I can only imagine what gets told to their mom about Jaymes though, and how I relate to him. That's ok, most of the neighbors think we're all a little odd.

Answer #3: Jaymes doesn't know how to talk yet, he learns things a little slower than you guys do. The downside: This one makes Jaymes out to be stupid. A kid doesn't understand that everyone learns at different rates, nor do they understand delays. What they get out of this answer is, "Jaymes is dumb." And Jaymes is absolutely NOT dumb. He's just... Different.

Answer #4: Jaymes is in a special class, so he doesn't get home work. He works on other things, like learning to talk and draw. The downside: This is a crappy example of what Jaymes does in school, and as soon as it came out of my mouth I regretted it. But how do you explain to an 8 year old the concept of going to school to learn social skills from his peers? To learn to function in a group? To draw a circle when he should, in a perfect world, be writing his name by now?

Answer #5: This is Jaymes' backyard, so STFU.

Ok, I didn't really say that. I just ran out of answers, and this one was about as good as the rest of them. They all kind of suck.

I wish the schools would put some emphasis on teaching kids about differences, about how some kids sit in wheelchairs, some kids wear leg braces, some kids can't talk, some kids wear diapers past 5. I wish they could find a succinct way to explain autism and other disabilities to the students. I wish they would let their kids visit the special needs classrooms, rather than keeping them seperate from the rest of the kids. I wish autism awareness started in kindergarten. It would make explanations so much simpler.

I don't know how to explain Jaymes to a kid. I don't know how to talk to kids in anything but what I've dubbed "autism-speak". Short sentences. "Go get shoes" "sit in chair" "no spit" "quiet hands". We're all cavemen over here I guess. Better than Elmo, who (as Jaymes speech therapist reminds us) doesn't use a single pronoun.

Jaymes is different. Different isn't bad. He learns differently than other kids, and he has a harder time retaining what he has learned. He needs meds to help him focus, that doesn't mean he's bad. Sometimes he spits, but he isn't doing it to be mean to the other kids. Sometimes he screams and throws himself down when he is mad. He has a hard time controlling his emotions, and he doesn't always understand what is being asked. He is in a special classroom with no homework because he needs the extra help to sit in his seat and participate in class. He doesn't talk because... Well I don't know why. He talks just fine if you tell him what to say, or if it involves food. Maybe he has nothing to say. Maybe he doesn't know what to say, when. Maybe he doesn't care. I don't know. All I know is, he doesn't talk very much on his own. Again, it makes him different, not bad. Not dumb. He wears diapers because he hasn't made the connection that poop goes in the potty. He isn't a baby, he just needs to learn.

That about covers it, but I don't think a kid would understand this. Some adults don't get it. What would you say?

Tuesday, May 5, 2009

This one is a MUST read

And tomorrow I'll have my own post. For now, let the wonderfully eloquent Squid enlighten you. Pay attention, anti-vaccine parents.

Click here

Monday, May 4, 2009

Surprises abound

I got a little surprise, and was reminded that at my house, one should expect the unexpected.

This is what popped out of the mare I bought who was "not pregnant." The mare is a story herself, actually. I bought her 3 months ago (give or take, I'm bad with time-frames!) from a horse trader for less than meat price. She was emaciated (pics below), wormy, had godawful feet, and was blind in one eye due to an untreated eye trauma. She still had saddle marks when she arrived.

Not a word was said about the mare possibly being bred until a recent email to the person, where they finally admitted she "might have been bred to a jack." Ya think?!

Anyway, Lucy is doing great. She's packed on the pounds, and her feet are being worked on. We've been battling some severe thrush, what a pain. She seems to be doing well after having the baby, though the vet said she did retain some of the placenta and gave her two shots of Ocytocin to get rid of the remaining pieces. Retained placenta can cause founder, reproductive issues, and even death, so it's a serious thing. $200 later, both have a clean bill of health, though we're watching momma for reaction to the Oxytocin and baby for a slightly herniated umbilical cord stump.

Baby is indeed a mule, and she's a gaited mule. Mom is a Racking Horse, I guess that makes baby a Racking Mule? She's gorgeous, and really nicely built (in my opinion) considering the backyard bred insanity and neglect the mare endured. I'm surprised this baby was born alive, all things considered.

Her name is Chilli the Moal (moal= mule+foal), and she's beyond adorable. I do not, however, want 2 horses and as soon as Chilli is 4 months old, she'll be sold. If you want a beautiful gaited mule, email me. She'd make a great little show mule. She's got a very delicate, feminine head and beautiful ears. LOVE the ears.

As you can imagine, I'm torn between "Oh fuck, why me" and "How cool!"

I'm trying hard not to get attached, I cannot keep her past weaning for a zillion reasons. Yes, I have room for 2, but not the money, or the landlord permission!

Anyway, welcome to the world, little Moal.

Before and afters of Mom: