The cold hard truth

[tgrimes]

Well, I just can't stop thinking about this... I got a call from the school on Tuesday from Theo's art teacher (he is homechooled and going only to art) who wanted a phone conference, and a four minute conference boiled down to:
"Can you not bring him in anymore, we think he would be better off in scouts or something.":eek:
It really caught me off guard it was an half hour before we had to leave to drop him off. She is very scared of something he did last week, which was basically run out of class after I had dropped him off, but I saw him and talked to him, and he went back in and did fine.
Now they know our family and the situation, and they do know he does better at the community center functions than anywhere else, so this is not some bizarre suggestion.
But coming from the school, it's just kind of sad, and I'm having a hard time getting my mind off it.
I don't know if posting it will help or make it worse!

[peglem]

I know exactly how you feel- kinda like they rejected your kid? At Allie's IEP meeting last month, the 1st order of business was for one of the school officials to "put everyone on notice" that if Allie doesn't start showing some real gains then its time to look for a different program for her. He said a lot of other stuff and I personally think they could have either been more diplomatic or been very blunt. I got the feeling there was some hidden agenda... But what I came away with is: "Your kid isn't good enough for our program" She goes to a private, self contained, cross categorical sped school that specializes in behavioral and language disorders. This is the beginning of her 6th year there. I didn't even know what to think or feel about this information- came from out of the blue! I've always loved this school, worked closely with them and know that they've done great things for her. Yes, I knew she was having problems, particularly with behavior...but that's what they do! Now I feel like they've decided to just bide their time until she's gone...home/school communication has gone way, way down and I'm very uncomfortable dealing with them.

[Braindrain]

These people are supposed to be education professionals, but they don't
seem to be acting in a professional manner:

what gives an art teacher the right to say what students s/he will teach?
I could see calling a conference if the class was being disrupted, but it
wasn't. The fact that he calmed down and went back to class should
have been the end of it.

And, these "officials" who are basically saying: "Shape up or ship out".
Who do they think they are?? Aren't they getting paid to deal with
special education students? And, another thing: if it's taken them
6 years to come up with this crap, something else must be going on
that they're not telling you about. There has to be a reason for this
attitude and you have the right to know what's going on.

I hope that you both get some answers soon.

[Mother's Heart]

it hasn't been six years. He just started back to the school this Fall...has been homeschooled the past few. the other poster referred to six years.

tgrimes. I guess I just have (((hugs))) cuz i have the same shattered feeling you must have. I can't help but wonder if the running off was just the opening she was waiting for to say she was uncomfortable, but didn't have a good reason to bring it up before.

[peglem]

Well, Allie will be moving to a different school as soon as there is an opening there. Her placement here is an out-placement by her regular school district(requested by me when her kindergarten year in district schools proved to be an improper placement) I have been very happy with this school. She's been having problems w/ strep related stuff the past couple of years and her progress has, at most, stagnated. Part of the problem here is that this school has only one program (they only accept students after several observations to be sure it is a good fit for them) and has a very good behavior mod program. Well, some of Allie's behaviors are highly resistant to behavior mod- (more like complex tics-no identifiable antecedent). If they had said, "We are no longer seeing the same success with Allie that we have in the past and believe that her complex needs would be better met in a school that has the resources/programs to address them." But, the way they went about it, was more like there was something wrong with Allie, like she was just not getting with the program. They talked about the school's programs and objectives, not about Allie's needs. Also, they don't believe that her behaviors are not always voluntary (at least I don't think they do-this was implied but not directly stated). Anyway, bottom line, I don't want Allie in a place where she is not wanted, so we'll move on- Looks like the new school will provide lots of opportunities for her, has a vast variety of available services and tons of experience with children who are more like Allie. Still, I feel like they don't love her anymore and that kinda hurts.

[tgrimes]

Looks like alternate placement is hard for everyone. This poor kid has had so many teachers give up on him, he just thinks of himself as a 'bad' kid that no one can handle. I just am so thankful that this time he's not going to know about it. I asked him how he felt about maybe switching art class for something at the community center and he said that was ok. I don't have the heart to tell him he is not welcome at the school anymore. I don't think he would even remember that incident last week, I stressed how well he did in class, not the thing that happened before. And I want him to have positive memories of when he did go.

[Mother's Heart]

I'm glad you broached it with him so well. Sounds like you've protected him and given him a sense of choice in the matter. Good job.

I know it hurts....feels like rejection or failure...but what it is frankly, is the teachers' failure, to teach him in the way he needs, and to cope with his behaviours/abilities. When I was a therapist I made it a practice to have the first thought I had whenever a child did not progress or 'get' what I was asking them to do was that *I* had not found the right way to teach that child...not that the child had failed (or refused). This allowed me really be aware of what was happening and to revise my approach until the child benefited. I try to remember this now, as mom.

[Isabelle]

I think that's what these authorities want to do with Allie, Vince and Theo, they all are close to that age. Their "hidden agenda" is to declared them as "difficult to place", "a complex case", a psychiatric case and best to be away from the family and into a group home where they will received "education" in a "structured" environment.

[milivica]

How aweful (((( :( )))). It must feel like getting a knife twisted in a wound that's already got salt in it. It's so hurtful for a mother, especially out of the blue like that. I'm glad at least he won't know the reason why he's switching. But you have my heart on this one. I can imagine how you feel, and I'm so sorry that happened.

((((Mili))))

[paulmoosberg]

seems the beast in question would be equal to how most people just want to make thier life easier and thier choices easier. i imagine that goes the same for people trying to teach kids with autism. seems that there have been a few posts about how teachers would rather get rid of the kid because they don't understand what or why he/she is doing what they are doing. and without even trying to understand they try to protect themselves instead of doing what is right and helping the kid. but not to be devils advicate, it is difficult to handle children on the spectrum. so kinda like a catch 22.

overall though i would say that these people are suppose to be able to handle special needs cases. and if they can't then they should be open to learning about the disfunction of a certain student so they may handle situations with that student better in the future. like i know a mom in austrailia that held a meeting to teach the teachers her kid was going to school at about autism and the different situations that can occur for kids on the spectrum. she found out that not many people understood the spectrum and that her meeting was very informative.

not to say you have to have a meeting everytime your kid does something with someone. but just as an option that worked for someone i know.

i do know but generally i am too nice. i don't know why others don't want to learn about how to interact with people with disabilities. but seems a lot of people deal with this about autism, or at least i have seen a few thread of similar nature about people not wanting to deal with autistics so they just make rules and or recomend for the kid to go away so that way it is not thier problem. you know, the not in my back yard people. you know the people that say help autism, and help people, just don't do it around me. i hate those people.

[peglem]

"but not to be devils advicate, it is difficult to handle children on the spectrum. so kinda like a catch 22."

Yes, Paul, and I guess that's why I'm not too hard on my daughter's school. She attacks people in completely unprovoked rages (only staff and family) and behavior mod programs look for antecedents and consequences to figure out and address behaviors. If those things are not present (like tics)- they can't really do anything to help. Their program doesn't fit my child and its the only one they have. But, why didn't they just say that? Since they are a private school and can easily find other students who are a better fit- why would they want to keep my child? Plus, I suspect they have other parents who don't want their child around one as low functioning as mine.

[Pamster]

I'm afraid Isabelle might be right, that there is a hidden agenda of getting our kids out of our homes and into group homes. But I'm gonna be honest here. Jackie is ten now and it is getting harder to deal with him. In fact it has crossed my mind to take some kind of legal action when they come to me and tell me he's being too much to handle, because it stems from them putting him in a class with another autistic boy who was unpredictably and unprovokingly getting violent with teachers and staff and then laugh about it afterwards.

What does Jackie now do? Hit, kick and sometimes even try to bite staff and the teacher, sometimes even directing it at other kids. I don't have anything in writing about this situation, it was all verbal over the phone where I was informed that Jackie was moved to a new class and why. I used to be so happy with this school, but as he's getting older it's starting to feel like puppy syndrome. By that I mean that when your child is sweet and loving and small...they are loved like puppies, but when they get older and it's not as easy to teach them things it's like they want a way out of the relationship now.

What are we able to do about this? I think Isabelle is definitely a voice of reason here on the autism forum and I appreciate all your pain that you've been through with Danny Isabelle, thank you for being part of the group, you bring so much to the table. And so does each and every one of you who've been here in the years I wasn't here. I know I go back pretty far with the forum, but I left for years and had some good times with my son, but as things got so difficult I found myself missing all my old friends from here so I came back. I am so glad I did because all the new faces are so wonderful to see, I just wish all of us had things a little easier then we seem to be having now. :(

He's ten, do I have to just accept he is NOT going to learn to read? I mean they are STILL doing kindergarten style worksheets and it breaks my heart for him because if he could talk through writing we would have a window into his thoughts and that I want so desperately it's not funny. In fact I am sitting here fighting tears as I think about how much I want him to learn to read and to write. He can do his name and all, but they're not doing words that I can see. It's all about letters still and not asking them to write words. Is it just NEVER going to happen for Jackie? Is that light NEVER going to turn on where he finally understands writing and reading well enough to break out and express himself? :(

[peglem]

My daughter doesn't laugh about it afterwards, she seems ashamed and embarrassed actually. But, what's the solution? The little ragey kids need to be educated too. I think with my daughter, they need to teach her what to do when she feels those impulses-to keep herself and others safe. But, to do that they need to understand that she's not choosing to act that way and doesn't want to. The impulse overwhelms her and she doesn't understand why its happening.

[Mother's Heart]

DON"T GIVE UP!

:) from one who knows.

I'm so sorry. I have to go running out the door until tomorrow.
I've been thinking I want to write a post about our journey...especially the latter few years as a way of encouraging other parents. Every time I start it is a bit overwhelming...but I decided last night that I need to post something like that here and on child neuro....where similar questions are being asked.

sorry I have to go now.

chin up....

[Isabelle]

But I am not the voice of reason. I am just reading what's happening to your children and memories are flowing back.
Clearly there is no progress or understanding on how to teach and guide the autistic child.

It goes this way if your child has tantrums, on drugs your child, after a while, would have "rages", "unexpected" as Peglem observed on Allie. It was hard for us to understand how drugs affect Danny's autistic condition. A somehow similar example was given as some people can handle their licquor and some can't becoming enraged, the same for some autistic on drugs they became enraged.

Once I contacted Janssen and Janssen and asked that they should put a warning in its Medical Description that Risperdal could make some autistic violent and self-injurious. Now, I read that FDA has approved its use on children with autism.

As I said no progress. European drs agree that drugs do nothing for the core features of the autistic and many fought for specific rights for the autistic, to prevent given them psychiatric diagnosis and drugs. For drugs to be considered last resort, for the shortest time and in the smallest dose, that still do not protect them totally but it is an effort.

[lisa6wks]

Peglem,
I feel so bad for you and your daughter. I have taught a couple of kids who's behaviors seemed more a function of their disability (one had Smith Magenis) and less a function of what was going on around them. Actually I found it rather helpful to realize that the child might be acting aggressively or non appropriately because of something biological, not a "behavior.

In a case right now, I have a child who spits when he does his self stimming. I don't think he can really stop from doing it so I have given him a space to do it in when he needs to, that keeps him from spitting on others. He seems to like going there and "getting it out of his system". He is non verbal so I have to infer from the way he is acting about it. I am thinking of it as sort of being like a tic and if the child doesn't get a chance to have it, it comes out more aggressively later on.

I wish your child's teacher could see her behaviors in these terms.

Lisa

[tgrimes]

Paul -
the "help autistics, just not in my backyard" type of people... too funny. That could be printed on an award, and the top of the trophy has a gold figure of a person with their head in the sand.
Anyone think of somone they'd like to give that to?

[peglem]

Isabelle-Allie's ragey behaviors came BEFORE drugs. The risperdal helps to control it. I understand, but disagree w/ your hardline on drug treatment. I think your Danny was injured because they did not use the drugs in a careful, responsible way. Their goal was to sedate him so he wouldn't be a problem, not to help him with his problems. I only resorted to meds when I was at the point of having to institutionalize Allie- Where I knew she would probably be drugged beyond anything I'm willing to do. I simply cannot keep her at home w/o the pharmaceutical help, it's too dangerous for the rest of the family- not just physically. After @ a week of constant rages- I was so emotionally frazzled. Also, its so incredibly frustrating there were times I was seriously terrified that I might snap and really hurt her- so I'd stop when I felt like that and just let her go ahead and work herself over, while I slunk away to sob my heart out! She was clearly miserable and so were we all.

Lisa- I'm so glad you are helping that child to deal with those behaviors that he can't control. It is hard to tell which behaviors are willful and which are beyond control. It takes careful observation, especially in children with communication problems. I think, even in kids who can communicate, they are often made to believe that they can control it and become convinced they are bad, when they can't.

[Isabelle]

Peglem, you are right! He didn't have aggressive behaviour or SIB before drugs, he was sedated for easy care and then he became aggressive. I heard that some autistic children developed aggressive behaviour and that's why they are given drugs. Also I know of one who was very aggressive and his mother rejected drugs and after 5 years of crazy behaviour he became so gentle. While others were put on drugs and got worse.

But Allie IS FUNCTIONING with them to some point, but she is still having problems,as you suspect it has to be related to strep infections.

I can't tell you, Peglem, you are doing the right or wrong thing giving drugs to Allie, but, one thing is important for you to be aware. When a child or person is given tranquilizers they behave affectionate, like enbriated (sp), their awarenes is sharpened and after a while all the 'bad behaviours' come back with a vengeance. Experts says drugs do nothing for the autistic and they should be used as "last resort, shortest time, at the lowest dose". Furthermore, studies have been done showing that given the drug once or twice a week is as good as given 2 or 3x a day.

The only thing I can do is to tell you what I learned and something else we were warned about drugs but we didn't believe them, so I don't expect myself to be believed. So, this is my last tirade.

[tgrimes]

This kind of pisses me off -
I finally recieved the written 'conference' report (art teacher on phone) from almost two weeks ago today, and it says "Theo exhibits strengths in divergent and creative thinking, but has trouble following directions or recieving help from others- his safety is in question when he leaves the room. He needs to be in a smaller class setting to meet success and safety - he needs to be able to interact with other children his age"
So basically, what this says is that an alternate placement will help with success. Why do they ALWAYS THINK THAT!!!!
All it means is someone else might complain a little less because special ed kids are 'their' job...