That cool uncle...

This is Doug Pokorney. He was not related to me, but he treated me like family from the first day we met when I was a bratty teenager. He was an amazing guy, a great farrier, and an all around awesome person. Kind of like that cool uncle a lot of people have. My "cool uncle" passed away yesterday after a long battle with cancer. He was a good guy and will be greatly missed. I wish I would have visited him in NY more often.

RIP Doug, with love from Amber, Jaymes, and Sierra.

Jaymes needs to develop a functional communication system... But we won't use the one he already has.

Because that would be entirely too cooperative with the parent and outside therapists. I touched on the issue yesterday of the IEP meeting and the discussion regarding Jaymes speech device.

Awhile back Jaymes had an Augmentative Communication evaluation up at Baptist. Why did we go through Baptist and not the school? Because I asked the school and they refused to set one up with their Assistive Technology person. So, I gave up and did the work myself. I got a referral from Jaymes' Speech therapist and got him scheduled. We did the super long appointment, Jaymes did a great job and really liked using the Vantage Lite. Fast forward to a few months ago, I forget how many exactly. Jaymes' Vantage Lite arrives. It's super complicated, but really cool. Jaymes loves it. Jaymes starts using it in therapy, and learns how to use it a lot faster than the grownups do. Mommy is proud. Mommy is overjoyed when one day, as we're sitting in the kitchen, Jaymes climbs on the counter, grabs the vantage Lite, turns it on and says "I want pretzels."

Jaymes can now use his device to ask for whatever he needs at home. He will independently go get it, put it on the counter, climb up next to it, and ask. If I don't respond, he asks a few more times. He asks for specific foods, or a drink, or his eczema lotion. He asks for his shirt and pants after a bath. He asks to go outside, or for a cookie. He asks in full sentences. He can say "I want a..." or he can say "Cookie, please" or he can say "get me a..." He understands the device, he enjoys using it, and he can get his messages across. He learns new phrases and words.

When we first got the device, we'd been trying to teach Jaymes to answer "what's your name" or even just say his name. It had never happened. Used the device a few times to show him how to hit the button to answer that question, device said "my name is Jaymes" and a few tries later, Jaymes opened his mouth and said "Name is Jaymes" and thumped his chest. He answers "what's your name" consistently now. I don't know why he needed the device to learn that, but years of trying to teach him ourselves failed and he learned with the Vantage Lite in days.

He has learned to answer the question "what are your dogs names?" and answers by either hitting the button or saying it himself: "Dog name Echo Midnight." He's learned how to introduce his beloved pink blanket. He loves the blanket button, and hits it then cheerfully announces "blanket name is pinky!"

But according to the school, Jaymes doesn't need to use it. They will not use the device I worked hard to get him, that cost them nothing. They refuse to send anyone to one of the FREE trainings, and have changed his speech therapist at the school from the therapist who did attend the last training with me just for Jaymes, to a new one who has not had the training. And won't send her for training FREE. So Jaymes can't use his device at school.

Instead, the school wants to start their own Aug-Comm evaluation with their own person, to choose a DIFFERENT device for Jaymes to use. They feel the devices are all comparable, which is not the case. At the training I went to a couple months ago, the presenter very clearly explained why the Vantage Lite is unlike any of the other, older devices. It's not just a bunch of boards, and you need to know how to use it to use it. Rather than use the device I procured and just send one person to the FREE training, the school chooses to make Jaymes learn to use a second device. It won't carry over into therapy and home time, and I think it will just serve to confuse him.

So I'm not very happy. I was so thrilled when at the last IEP meeting at the end of last school year, the speech therapist said she would attend a training and promised to use Jaymes Vantage Lite in their sessions. No one argued with it at that time, no one was against it at all. I'm not sure why it's changed now, or why my child has to learn to use a whole new device to save his school some money.

With all this spare time, it's a miracle we're all still alive!

Oh yes, TONS of spare time. Because you know, going to a zillion doctors and therapists each week wasn't enough... No, I had to add school into the mix. I am SO tired! On the plus side, I've had fours tests and a bunch of English papers- thus far my lowest grade has been a 93. Hooray for success.

We had Jaymes' IEP meeting last Friday, that was kind of draining too. I was super lucky in having a really wonderful lady from the ECAC there to help me out, as well as Jaymes awesome case manager, Julie. We decided it would be best to tape the meeting, a request that was met with a decent amount of barely suppressed hostility from the school's end. I can understand it being an annoyance, but really, it protects all of us to have the whole meeting right there and able to be reviewed should the need arise.

It was a very full, very small, very hot room! The meeting included myself, Doreen from ECAC, Julie, the principal at the school, the school speech and occupational therapists, Dr. Evans-Everette (one of the higher-ups in the district), a regular ed teacher, Jaymes' teacher, someone from transportation, and the school's case manager. Out of all these people, only I, Julie, and the school case manager had actually been at one of Jaymes' IEP meetings, so it was a lot of repetition to play catch up.

First topic at hand was the bus situation, obviously. Jaymes had had his bus stop changed from a very quiet side-road to a very busy main road, and I had not felt safe putting him on at the stop because Jaymes is... well, he's Jaymes. I'd filed an appeal which had been immediately denied, so we had needed to invite a transportation person to the meeting to deal with it. There was much argument, including a lot of "It's the parent's job to make sure the kid is safe while waiting for the bus" which was really kind of insulting. I think sometimes these folks forget that while I'm a stay at home mom, I'm not a moron and I do indeed have a brain. In the end, we pulled up a picture of the area on Google and the actual view helped very much. The bus was changed immediately, and we are thrilled to have the same driver as last year. They did also manage to get a harness that sort of fits on his bus, which is great. It's one less thing to deal with, figuring out how to get him to school was exhausting for both myself and Jason.

The next issue was Jaymes' Vantage Lite. Apparently the fact that I had to go to an outside-school office to get the darn thing and go through months of paperwork and waiting doesn't mean a whole lot- does not sound like he'll be allowed to use it at school. Instead, the school plans to find a different device to use with Jaymes while at school. This is the stupidest thing I have ever heard. I provided the device, and saved them thousands of dollars on it. I went to the effort of getting a much better evaluation than the school would have provided, which apparently means... Not much. They've decided that all the devices are the same or similar, so they can just use something else. I think it's ridiculously unfair to expect Jaymes to use two different devices just to save the school some effort, and am thoroughly disgusted with the outcome on that one. The school seems to have forgotten that the point of a device is for Jaymes to be able to communicate in whatever way works best for HIM. It's not our job to save them work and money, that's their own job. They appear to have quite a talent for saving money at the expense of their students anyway, from what other parents have told me. Yeah, I'm very unhappy about that part of the meeting, and I am bitter about it. That fight isn't over with yet.

Next order of business was finding a way to get Jaymes out of the self contained bubble of a classroom he is currently in. His teacher seemed very resistant to the idea of including Jaymes in any of the regular-ed kindergarten stuff, but in the end we all agreed that he could go out every morning for circle time with the regular Kindergarten class, as well as to PE. It's not much, but it is a start and I'm glad he'll be getting out at least for that 30 minutes a day. That's something.

In general, the meeting was a lot of rehashing old points about the speech device and fighting over Jaymes' placement. I don't like the way Jaymes is talked about at these meetings. The wording is incredibly offensive. Calling it the AU class is insulting. Treating my kid like he's brainless is insulting. The end of the meeting was a little uncomfortable, as school had ended and everyone wanted to leave. Sorry, but I didn't choose the time, and we weren't leaving until we'd finished. I felt bad keeping everyone late, but they were getting paid- I wasn't.

I can't complain 100% though. I think the school realized that I am serious about advocating for Jaymes, and I'm happy that they were willing to give inclusion a try. This is 2009, not the 1950's. We don't hide our disabled kids anymore. The schools will eventually get with the program in regards to that fact, but until then, we parents just have to keep pushing. I'm pleased that the team was able to look past their personal opinions and make a decision that will be in Jaymes' best interests. I think he'll do pretty well once he gets used to the swing of things.

This school year will be different than the last couple. I didn't keep good communication with the school last year, which is why I was as out of the loop as I've been. I'm slowly learning the laws and the rights I have as a parent, and I'm learning to be more assertive. It's still very uncomfortable for me, but it's a necessary skill so I'm ignoring my fear of confrontation and doing the best I can.

So, in short, the IEP meeting accomplished the following:

-Bus stop fixed
-Jaymes goes out to circle time every day with the regular-ed class
-Jaymes goes to PE with regular-ed every 7 days (it rotates)
-OT goals were updated, and have I mentioned how wonderful his school OT is? I love that woman!


We didn't get a lot done, but we got enough to keep me happy until his annual review in November. My goals until then include getting his teacher to actually tell me what's going on at school (his notebook home just has stickers that say "awesome!" etc, they don't say a word about his day), to get this silly aug comm thing set up with the school, and to help Jaymes succeed as best as he can. The longterm goal for him is to keep him on track to leave Elementary school headed for a regular-ed middle school. there will be no Lowrance middle for Jaymes, nor will there be a Carter Vocational Highschool. Jaymes has more in his future than the vocational track.

I can't complain that

I wish you would SLEEP

School starting for Jaymes has been both good and awful. On one hand, it's soooo nice to be able to relax with Sierra and play with her and get house work done. Those are things I can't do when Jaymes is home. It gives us all a much needed break from his new-found stimming and behavioral issues, wherin lies the "other hand" portion of things.

Jaymes is a child who copies what he sees. If he is surrounded by typically developing children, Jaymes copies their mannerisms. Last year at school, he was in a half typical half disabled classroom. He followed the other kids as they lined up, he sat on the carpet when they did, and he copied the words they used. This year, Jaymes is in a self contained "AU" class. The kids (from the limited time I've spent each morning at school) appear to all be mostly nonverbal, and many show a lot of stimmming and obviously autistic behavior. Makes sense, it being an AU classroom. However, remember that Jaymes copies what he sees. He's not seeing any typical children anymore.

On the third or fourth day of school, Jaymes was severely bitten by another child. That day, my son who has NEVER been a biter, came home and bit his sister very badly. He's been biting ever since. Could it be random coincidence that the biting began the day he was bitten at school? Sure. But I doubt it. Jaymes has plenty of undesireable behaviors, but biting other kids has not been one of them. At one time when he was younger he would bite me if I held him during a meltdown, but that was the extent of it. Never another child.

So, now we have Jaymes, much changed since he started school. Before school began, he stimmed less. He slept at night. He listened better. Now, he's stimming nearly all the time, and he's learned some brand new stims from the other kids. He is hurting himself again, and he is no longer following directions like he had been. He bites, and he spits. He has stopped sleeping at night, something we have not had in YEARS.

I am exhausted. I need sleep! It's one of those things I have always been lucky to get, Jaymes has been so good about sleeping at night. I'm having a hard time with not getting as much, now that he's up screaming and throwing things at 3am.

Tomorrow is the IEP meeting that took more than a month to get scheduled. I'm not looking forward to it. Jason isn't going, smart man. I wish someone would go in my place! Advocating for your kids is a hard, uncomfortable thing to do. Hopefully something will be accomplished, and make all this stress in the last month worth it.

Jaymes has not had a bus because they changed his stop to up on a VERY busy, narrow road without a sidewalk. I like him alive, not in road-pancake form, so we've been driving him instead. This means Jason has to take hours off work, and Jaymes has to be picked up early almost every day. We're spending a ton in gas, and Jason's getting in trouble at work. Not a good situation. That's an IEP discussion.

Another topic for discussion is Jaymes' class placement. He needs to either go into a class with higher functioning autistic children, or spend parts of his day out of that classroom to get his peer interaction time. I do not want him to continue the way he is. Originally the teacher told me they ate lunch in the cafeteria- asked an aide yesterday and she said "oh, of course they eat in their classroom!"

Great.

So, long story short, I need sleep, the IEP is tomorrow, and I'm not excited. But Jaymes is still snuggly.

Cheating horribly

As a result of not having a lot of spare time, I'm going to make a quick update, then post the paper I had to write for my college English class. It'll sound familiar, it's about the day in the food court at the mall where we saw the 15 year old with autism and his poor exhausted mom. Heavy on the fluff, forgive me. It was creatively tweaked to sound better than my normal writing style!

Anyway... Finally got an IEP date and time, assuming it's not changed up on me again. It took a month to get this, which is ridiculous, but we have it. I'm not looking forward to it, but I'm very lucky in that I'll have a couple people there who can help me out if I get too flustered to make sense.

Jaymes has another hearing test a week from today to determine how much he hears, and if he needs hearing aids. We'll see what happens there.

School is going really well. I like it a lot, although the social interaction part is really scary for me and the walking around is hard on my still sore hip and back. I got a 93 on my first psychology quiz, and am doing really well with math too. Math was the thing that worried me the most, so I'm feeling much more confident. English... I haven't decided. I like the teacher, I think she is hilarious and she did feed the class candy last week. I'm not very fond of the "writing process." I like to just write. My process is as follows: write, write, rewrite, rewrite, read it aloud, rewrite. Sometimes I just write it, like I did with the first paper I turned in (the one posted below). I'm not really the type to outline and put so much planning into it. Writing is a creative process, not one that needs to be careful built in bits and pieces. I don't know.

In other news, I ran out of Percoset again, and that sucks because I'm still in a lot of pain at night. It hurts to lie down, and to get back up. I don't sleep well in pain, so I'm dead tired most of the time. I have half a pill left for tonight, then I'm not sure. The doctor won't see me until November, so I might have to go back to the ER for a refill.

I lost 5 pounds, which makes me very happy. I'm still fat as a cow, but it's progress. I'm exercising as much as I can, but if I push it, I get so stiff and painful I cant walk without the crutches at night, so I have to be cautious about it.

That said, here ya go...

Food for Thought, Courtesy of the Food Court

As a mother of an autistic child, I tend to look at situations in public places with a little more depth than the average person might. For example, if I see a child screaming and flailing on the grocery store floor, my mind immediately jumps to the possibility that the child might have a developmental disability of some kind, rather than thinking “wow, what a spoiled brat that child is! His mother should smack some sense into him.” Parenting a special needs child and spending large amounts of time with special needs people of all ages has given me a different perspective. I’ve also found that I can “see” autism in children around me almost immediately, and unconsciously. I have great respect for this extra bit of perception, and consider it to be a valuable gift because it enables me to respond appropriately, and to help others understand something they otherwise wouldn’t.
It was a typical Saturday. My husband and I, along with the two kids were headed out to the mall in Winston for a lunch out and a little window shopping. It was exactly the kind of day I love best: rainy, grey, and quiet. The mall was not all that crowded when we first came in, which is always a godsend where my son is concerned. We walked through the parking lot, both kids excitedly bouncing around and Jaymes doing his signature “Jaymes babble”. Something about the harsh light given off by fluorescent bulbs, and the way it shone off the polished tile floors has always been very calming to my little guy, and he was at his best that day.
From the walk into the mall, to the elevator ride, to sitting down in the food court, Jaymes was a model citizen. There was no frenzied head shaking, no spitting, and no bloodcurdling shrieks. He sat peacefully in his chair and ate his lunch. As a result, I was able to sit peacefully in my own chair and eat my own lunch.
As I was enjoying my heaping Styrofoam box of teriyaki chicken, I noticed a commotion across the food court. At first it was just a couple of people turning, then it became a cacophony of chairs scraping and voices as people saw the disturbance and began to comment aloud. Some wanted to call security; others wanted to call the police. The cashier at Sonic pointed and laughed.
In a perfect world, the sight of an obviously disabled person would not cause ripples of laughter and haughty indignation in quite a few of the occupants of the food court. However, this is obviously not that perfect world. As the fifteen year old boy ran toward the arcade, flapping his hands and making loud squealing noises, the bystander’s noses wrinkled in disgust and twisted mouths spat the word “retard” and “freak” just loud enough to be audible to the exhausted mother and sister who were trying in vain to contain their charge. Two small women can only handle a much larger male for so long, and eventually the boy tore from their grasp and bolted into the arcade. There, he stopped and made a series of loud grunts, followed by the removal of his shirt. The shirt was in tatters anyway, but I guess a shirtless fifteen year old African American boy was offensive to one gentleman, who felt the need to jump up, curse loudly, and move the contents of his tray to another table. The boy’s mother and sister finally did catch up, and started to lead him away past our table.
I seized the moment to say hello and ask if her son was autistic, the answer to which was obviously yes. She was tired. You could see it in every line in her face, and in the sweat that shone on her forehead. Her hair was sticking out sideways, her shirt slightly torn, no doubt as a result of trying to keep a hold on her energetic son earlier. In spite of this, she was proud, and unashamed. At that moment I really felt that connection… It is one that crosses between cultures, age groups, economic classes. I understood her exhaustion, and her humiliation, but instead of feeling sorry for her, I felt this overwhelming sense of admiration and pride at her being able to come out in public and not feel shame. To demand her son’s right to be there, despite the cruel words and harsh glares from people who either could not, or chose not to understand.
People like this woman inspire me, and remind me why every day I continue to fight for my son. Society in general can be cruel and the desire to stay at home and avoid the lack of understanding is strong, but the only way that any of us can create a world that will embrace people without regard for their differences is to create our own place, and help teach others to show our children the respect they deserve, even as they age into adults.
I suppose the moment felt longer than it really was, because as her son bolted, the nameless mother said a hurried goodbye and took off after him. A couple at a neighbouring table who had originally insulted the autistic teen leaned over and apologized to me, then they thanked me for saying something and helping them to understand what was going on. I had not spoken a word to this couple, but by overhearing the conversation between myself and this other mother, they had gotten the point, and it proved something to me. Most people aren’t intentionally cruel. They simply have not been there for the things we may have experienced, and by sharing our own stories and our own experiences, others can develop an understanding and choose to join our cause and embrace the differences. It’s a beautiful thing.
We finished our meal, and walked to the cookie shop to get a purple dinosaur cookie for each kid. The entire time I found myself feeling very grateful to Jaymes for being so wonderfully calm that day. It occurred to me that I should strive to be more like the nameless mother in the food court. A courageous soul who walked into the line of fire, head held high, and came out exactly as she went in.