MIL passed away a couple days ago. I was with her when she died. We all were. :*(

MIL not doing well. It's probably a matter of days or weeks now.

Today was the IEP meeting. This is the one where they do the 3 year evaluation. The IEP team has decided that Nathan is no longer autistic.

Imagine that.

Apparently, he is cured of autism. Some of the tests do show signs of Aspergers, but their main diagnostic tests indicate that Nathan does not, indeed fall within the autism spectrum. At all.

Yes, he still qualifies for an IEP. They now classify him as having OHI/ADHD.

So now the Autism Team is no longer involved with him. And besides, the Autism Team indicates that they think his issues are "behavioral" anyway, according to the IEP team.

Wow, I must be amazing, to be able to come up with a cure for autism, huh?

I didn't hear anything from the school regarding my note. Not yet, anyway.

DS had a meltdown today. :( They called me on his cell phone, and asked if I would try talking to him.

At first he was growling, unable to communicate. But then, slowly, I started getting mono-syllabic responses, which led to partial sentences. When I could get him to talk, I got him to go back into his classroom.

During the entire conversation, he was left alone in the hallway. Probably the best thing they could have done. They just let us be. However, I did find out during that call that his aide was not there AGAIN during this melt. He had no idea where she was. Apparently, she was at school, just not with him. She is often mysteriously absent during his melts. Either that, or she just didn't see what happened. :(

The swine flu has closed some schools in the surrounding area. But since there haven't been any diagnosed cases in our district, our schools remain open. I sure wish they'd close, just as a precautionary measure. (Not because I fear the pandemic the media has hyped up, but because I can't stand dealing with this school.) I'm counting the days until summer vacation. I'm needing it even more than DS, I think. I just can't stand their stress.

Ds is not being permitted to attend the field trip this year. This trip is a sort of rite of passage. All kids his age attend. It's a three day camping trip. We had been told from day one that they could not accommodate his autism on the trip. I offered to go with, they refused. I asked that they make arrangements to have an aide of some kind attend with him. To my knowledge, they never made any attempts to do so. I was never informed of any attempts. Each kid had to raise money for the class to attend, or they have to pay their full way. Two days after DS participating in a fundraiser, and about a week before I was to decide whether or not he would go, we received a letter stating that he would not be permitted to attend. He had had too many meltdowns at school. They listed out the dates he had them, with all but one being unknown to us. And for that date, they counted TWICE. Which I feel is very unfair, counting the same meltdown twice, for two things he did during the same meltdown. But I didn't argue it, knowing full well that they would just come up with something else to prevent him from going. They had told us all along they did not want him to go on that trip.

Now I get a letter coming home that says they want to know if I will be sending him to school the three days that all the other kids his age will be gone. (I will not.) They want to send home the homework he will miss during those days!! HUH?? The rest of his class will not be there! Why would they send homework home??

This just sounds like double punishment to me. First he won't be allowed to attend, and then they give him work that none of the other kids have to do?

I had discussed all this with his teacher and the aide a few weeks ago. They told me then, that if he did not attend the field trip, I did not have to send him to school. Other parents in the same boat didn't send their kids in the past. I had been told from the beginning that if he didn't go on the trip, and he went to school, they would put him to work in the younger kids' classrooms. I expressed my concern that this would not be in his best interests. They assured me that it would be fine if I didn't send him. Just call him in absent during those days. No problem. They never mentioned that there would be additional work assigned!! It was never mentioned during the open house, either, when they discussed what would happen if your child was not allowed to go for punitive reasons. They talked about having them work in other classrooms, not doing homework assignments.

DS has a real issue with homework at ANY time, and this would just flip him out. I'm very upset about it.

I really believe that it wouldn't have mattered how good or bad he had been, they would find a reason not to allow him. They tried all year to talk me out of sending him. But they had made SUCH a big deal out of how "this will be the trip of a lifetime" that they made him really want to go.

I found it very interesting that they had not sent home any kind of reports during the school year indicating that he'd had the meltdowns. No disciplinary reports at all. One especially bad one I knew about. They did call me at work. But I was not informed about any others, and no report was sent home. Then all of a sudden he has too many. And they didn't tell me until after he participated in the fundraisers! Why did they insist that he participate in the fundraiser if they knew he was very close to not being allowed to go? (They were all activities requiring social skills - not exactly an easy thing for an autie to do.) I thought that was very low. They could have just told us that he was close to being banned from the trip, and let us decide if he should participate. But no. They waited until he had helped the other kids attend. THEN told us he wouldn't be allowed.

DS already feels that autism is "bad," and he is
"bad" because he has autism. They school has fed into this. He is constantly being told that his behavior is bad, even though they know it is out of his control. His meltdowns are a reaction, not an action. He spirals out of control when his needs are not being met, when he is not being supported properly. Meltdowns are rare at home, and no where near the intensity they are at school. But they refuse to listen when we tell them what works and what doesn't. They continue to restrain him, though we tell them that's the worst thing that they could do. They do not follow the IEP. (The IEP calls for them to empty the classroom if he becomes escalated, but they do not do this. The IEP states that restraint should only be used as a last resort, but they have used it for such stupid things as to drag him out from under a desk and remove him from the classroom - not exactly a last resort or when he or other children are in danger. Etc.) They do things they know will escalate him, and then get angry with him for escalating. They have a chart that is supposed to help de-escalate him, yet they never use it (that's in the IEP too). DS says they haven't used it since the beginning of the school year, though it's in his IEP to show it to him repeatedly through the day.

So lets ignore the things we're supposed to do to support his autism, then stand back and comment on what a bad kid he is when he escalates. Nice.

Now they plan to not only exclude him from a trip they have been promoting all fricking year, they also want to dump homework on him on top of that? WTF? And yes, they KNOW homework is a huge issue with him. They've known that all along. I've fought every year to have limits placed on his homework. Have they listened to that? Nooooo. That's not convenient for them.

And tell me, why wouldn't he feel that autism is bad, when they are constantly telling him what bad behavior he has. And why wouldn't he feel that he is being punished for being autistic? (I feel he is, too.) It all reeks of discrimination. And that he is being punished because that all makes it easier for them.

This has me very upset. I can't believe they would dump homework on him on top of the other punishment. I don't believe it's fair. And I don't believe he can deal with it. I think it's just inviting more meltdowns.

I've written a letter to the teacher. We'll see how that goes over.

MIL is back in the hospital. They are testing again for c.diff. Also a probable bladder infection.

www.chicagotribune.com/news/local/chi-police-teen-autismapr25,0,3799143.story
chicagotribune.com

Family claims Chicago police officer beat autistic teenager

Cops decline to discuss incident which they say is under investigation

By Angela Rozas

Tribune reporter

April 25, 2009


Days after Chicago police promoted their expanded training for dealing with people with autism, a teen with the disorder was allegedly struck by an officer who ignored the family's pleas that he was a "special boy."

While Chicago police refused to discuss the incident, relatives of Oscar Guzman detailed the alleged assault and said it was an example of why more officers need to be trained in handling people with special needs.

Guzman, 16, was standing on the sidewalk Wednesday night, taking a break from working in his family's fast-food restaurant in the Pilsen neighborhood. He was watching cars go by when a police cruiser pulled up and two officers began asking him questions, his family says.

Guzman didn't understand the questions, said his sister Nubia, 25, and looked down, away and eventually began walking away. Diagnosed with moderate autism at age 4, he doesn't like confrontation, his sister said.

The officers went after him, his family said, prompting the frightened boy to run into the family restaurant, yelling "I'm a special boy!" as he fled, his sister said.

Despite Guzman's parents yelling to the officers that he was a "special boy" with "special needs," one of the officers struck Guzman in the head with a baton, cutting a gash that would require eight staples, his sister said. The parents witnessed the blow being struck, she said.

On the ground, blood pouring from his head, Guzman, who has the mental capacity of a 5th grader, mumbled again and again, "I'm sorry. I'm sorry. I submit. I submit," his family said.

The Police Department confirmed the incident is under investigation but declined to give the officers' version of what happened. The Independent Police Review Authority said it is investigating and has interviewed relatives of the boy.

The family said it is considering filing a lawsuit against the officers.

The incident occurred the same week the department promoted its award-winning Crisis Intervention Team, a program to train officers to recognize the needs of citizens with mental illness or disabilities. More than 1,100 of the department's 13,500 officers have gone through the 40-hour training since its inception in 2004. The program has won national praise, and just last month, its leader received a Chicago police departmental commendation for the team's work.

To mark Autism Awareness month, the department held its first Autism Safety Awareness night with the Easter Seals on Monday and sent out a six-page training memo to all sworn personnel on autism and police responses. The department also handed out thousands of index cards with tips on how to handle people with autism and distributed buttons for officers to wear.

The department also now trains new recruits in dealing with people with mental disabilities.

While he could not speak to what happened Wednesday, Officer Jerald Nelson, a member of the Crisis Intervention Team who has an 18-year-old son with autism, said the department has been working to better train officers on how to handle people with autism.

"To recognize it, that's number one," Nelson said. Some characteristics of autism -- avoiding eye contact, not responding to questions -- are the same trouble signs that officers are taught to look for in suspects, he said. But officers could make a situation worse if they don't recognize the difference between suspects and those with disabilities. Touching someone with autism lightly can agitate them, for instance, and certain restraints can even endanger them, Nelson said.

One in 160 children has a diagnosis of autism, Nelson said. Statistics show that officers are seven times more likely to have contact with a developmentally disabled person than the general public.

Colleen Shinn, training specialist and manager of the Autism Program service centers for the Easter Seals Metropolitan Chicago, said the department has made strides in developing autism training.

"I think it's great they're being proactive," she said. "There's more work to be done."

But two days after the incident, Guzman's family says not enough has been done. They want the officers involved fired.

"It's upsetting. Shouldn't they all be getting trained for this?" said Nubia Guzman.

She worries her brother is scarred. Guzman, who never had trouble with police, has cried at odd moments since Wednesday night, his family said.

He drew a picture of the incident, displaying the angry face of a towering officer holding what looks like a bat over a cowering figure. On Friday he described the incident in clipped phrases to a reporter.

"Something terrible happened," the teen said. "One chased me. Killing. Killing unnecessary people. Innocent. Beating people with the stick. It's terrible. ... It's going to heal. I'm all right."

His mother, who was always protective of him and had to be persuaded to let him walk to his favorite Chinese restaurant down the street, said she now fears letting the teen out of her sight.

"This time they hit him. The next time, they may kill him," Maria Guzman said.

arozas@tribune.com

Copyright © 2009, Chicago Tribune

It's Ds' birthday today!! :D

Oh my. I just came from the "Linking Meeting," where the process begins to link DS from the school he is leaving to the school he will be attending next year. I'm overwhelmed. I can only imagine how that little guy feels.

The school is HUGE. I was surprised at how big it is. And when we walked in, we entered next to the boys locker room, where these gigantic kids (who resembled high schoolers more than middle schoolers) towered over me, and were noisy and full of commotion. Just as kids should be. But not how my little aspie is. DS just froze. I slid an arm around him and just scooped him right though the doors and on his way down the hallway, and he was fine. I was thinking holy Toledo, those kids are enormous. And loud. And how the hell is he going to cope with that??? But then again, I'm on high over-protection mode. Once DS got past the surprise of the big loud kids, he seemed fine. Mom on the other hand is shaking in her boots.

The meeting was up a ton of stairs, and my knees were killing me by the end. Let's hope I don't have to spend much time here.

The meeting went very well, for the most part. The people seemed very kind, very eager to help, and full of information. I was on info overload very quickly. DS was on every kind of overload, but he did reasonably well. Just very fidgety and nervous, and then went into a form of mild shut down, where he laid his head on the desk. It was okay, we didn't need him to be completely participating. And DH took him for a walk which helped tremendously. DS spoke for himself most of the time. I was asked how to avoid melts and how to de-escalate a melt (um, don't touch him...!), but they made it clear they had been completely and thoroughly filled in by the old school. Dang. Well, no surprise there. I knew that was coming. I was just having some wishful thinking that they could get to know the little squirt before they passed judgment on him, but that wasn't very realistic.

I was disheartened that they brought up the police in the very first meeting, and right in front of my son. Not a good sign. Not entirely unexpected, but I thought this would come later, not during the first hour. Sheesh. But I suppose it had to come up at some point.

But all in all, DH and I were very pleased with the meeting, and got a good vibe from everyone at the new school. I met one of DS's future teachers, and I really got a kick out of him! YOUNG. Holy cow, was he young. But he was quirky and funny and looked like a PERFECT teacher for my son, if first impressions are any indication. (Mine are not always on target.) I liked him right off the bat. This would be the math teacher. Even better, because DS loves math.

There was talk of a peer taking DS under his wing, and a student giving him a tour sometime very soon. And lots of kids that will be protective of him.

OH! And the teachers are talking of...WILLINGLY...VOLUNTARILY...taking a seminar on autism!!! Woohoo!! That could only help. There is one other autie there. I have no idea what they're like, or if they are high functioning or not. It will be interesting to find out. Wouldn't it be cool if someone actually had a bit of understanding about autism here? One can hope, right?

Overall, DH and I got the impression that this group was much more willing to work with us and help us. And they seemed very upbeat around DS (except for that one police bit, but that was brief, and kind of went over his head). DS is excited to hear there is a swimming pool. (Yikes, must teach him to swim NOW.) I hadn't expected that. Not in middle school.

Sigh. I'm a wreck. A complete nervous wreck. Nothing really went wrong, and the vast majority seemed to go right. But I've been warned over and over about middle school being rough on spectrum kids. And my mama bear instincts are on kicking up a notch...or ten.

DH thinks all will be fine. He'll do fine. The group seems helpful and friendly, and talk about being proactive, and preventing melts. All good.

The old school has left these scars on my optimism, however. And I struggle with all of this.

But it will be a new year, a new building, a new staff, and a whole new beginning. Right? Every reason to expect the best outcome, right? And DS has come SO far, in being more independent, in being more outgoing and social, in being more responsible. All good, right?

I'll keep my fingers crossed. And I'll keep trying to shove all this fear down, and just wait and see what happens.

Oh yeah. When we got back from the meeting, I got a letter from the (current, old) school. It said that DS has had four instances at the school, and if he has five, he will not be permitted to attend the school field trip. It's a camping trip, away for the weekend. Crap.

Interesting to note, we were not given formal write ups about these instances. And two of them were on the same day, and were actually from the same meltdown! Not very fair if you ask me.

We knew this was coming. They told us on the first day of school that they weren't going to be able to deal with his autism on this trip. And I knew right then and there that they would make absolutely sure he couldn't attend. Also, they have made no attempts to include him, no attempts to make arrangements. But they sure as hell made sure he did his part in the fundraising efforts BEFORE they sent that letter to me, informing me that he wouldn't be permitted to go if there is just one more incident.

Charming. And really emphasized the contrast between how the new school is trying to work with us, but how the old school isn't. I'm so glad to be leaving that place. I hope I never have to set foot on those school grounds again, or see those teachers again. A few of the therapists and such were very good, and I liked them. The Speech Therapist, for one. She was a gem. A real saving grace. I thought the world of her. I'll miss her. And the Social Worker. A few others, too. But there are some that bring up such contempt and pain in me. How can they treat a little boy that way? There are staff member that I truly wonder about, if they even have a conscience?

So out of one school and on to the next. Will it be more of the same? Or will we finally find someone who wants to help a little boy discover the joy of learning, while helping him get past his challenges? I know it can be done. I know it can be done easily. I know because I've done it myself. Now will they embrace that? Or will they try to fit him into the neurotypical box that he won't fit into?

DS is now typing 44 wpm, with 100% accuracy!