Desperate parent of autistic needs help!

Discussion in 'Special Education Archives' started by Charyl, Sep 26, 2006.

  1. Charyl

    Charyl Rookie

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    Sep 26, 2006

    Hello---I'm not a teacher, but I searched and found this board thinking someone could help.

    I have a son with mild Asperger's who is doing well in his 3rd-grade class. But I also have a daughter in 1st grade who is more severely autistic. My family is military and we just moved here from another state/school dist. a month ago. Yet, she seems to handle these moves well. The school dist. in Wyoming was bad about getting her early intervention, but once she got into kindergarten she was helped tremendously. All the teachers, staff, speech, etc... were excited to work with her and never made me feel bad. They gave me great hope and seemed very competent with her. We very rarely got a bad report or a feeling that the staff could not handle her.

    Her major problem is is that she cannot communicate well. She can recognize vocabulary words and read sight words (she is also very advanced academically), but she cannot form sentences or have a conversation. Her comprehension of things (especially abstract things) is very limited and she can become obssessed with certain objects or routines. She is a sweet girl at home and her bad behavior is very limited here.

    When we moved to Ohio and she started 1st grade, she was placed in the regular classroom with an Aide's help (in addition to speech and OT throughout the day). She is very bright and putting her in the profound special needs class seems tragic. She would not progress in that enviroment. Throughout the day, multiple Aides and support people are in and out with her. I think that is a bad idea, because I feel she needs only one or two rotating Aides as she had in Wyoming. I feel the amount of people and commotion is confusing to her. They all report that they have a difficult time transitioning her and getting her to do her schoolwork (some of which we are having a hard time teaching her because she cannot grasp the concepts). When she doesn't want to do her work or is bothered by something she throws loud long screaming fits (sometimes throwing and kicking as well). This, of course, is very disruptive to the class and teacher. Sometimes they are not even sure what has caused the fits. They have tried everything the old school suggested on calming her down so she can learn---nothing seems to work (pressure vests, calm areas, sending out to the hall, rewards, etc...). I am afraid they are going to suggest she be taken out of the class to be put in a class where she will not progress.

    As a result, over the last month, we have been to meetings where everyone complains about her screaming and we have tried to teach them how to be firm with her and to break her attention from the fits. She is very strong-willed. We have explained she tries to manipulate and test people to get what she wants. I feel some of the Aides are being too wimpy and letting her scream. They are also trying to talk and reason with her, even though she can't understand them. The gym teacher even walked into a meeting with a scowl on his face, didn't introduce himself, and the only thing he said was that he didn't want to have to take time from the others to help our daughter. Yet, this school was awarded with a "school of excellence" award (I live in the Dayton Ohio area). I know my daughter well and can control her, of course. But I didn't go to college for Spec. Ed. or teaching (as they have). I don't feel they should continually be asking me for answers.

    I used to have hope for her--but being here, I am so devastated. She has so much potential, but I don't feel these people can help her (nor do I feel they want to). We have enough hardships in our lives, without having to feel like we've placed an unwanted burden on the school. Her old school made sure to keep bad reports to a minimum and always told us how much they loved her (and her brother) and how well she was doing. I feel like crying.

    My questions are: What do I tell the teachers/staff when they complain they can't get her to stop screaming. What do I do about this feeling of my daughter not getting the help she needs? What if she continues these fits? What are our options? Should we consider medication? Please help! :confused:

    Thank You,
    Charyl-
     
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  3. MissFrizzle

    MissFrizzle Virtuoso

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    Sep 26, 2006

    First of all, I commend you for being an involved, well-informed paretnt. Do not be intimidated by the scowling gym teacher. His behavior is unacceptable, and he really has no choice in the matter.

    I see what you are saying concerning all the different aides working with your daughter. Typically, autistic children do have difficulty with transitions and need consistency ( as I'm sure you are well aware). I think that the aides need to be on the same page and the school should see to it that they are all given proper training.

    I am not opposed to medication, but in this case, it seems to be an environmental stressor that is causing your daughter to act out. You mentioned that her behavior at home is not bad right? I am not a doctor, but I would say medication would be a last resort.

    I have to run, but when I can think more clearly... I will respond again. In the meantime, good luck and keep fighting!
     
  4. AspieTeacher

    AspieTeacher Comrade

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    Sep 27, 2006

    Charyl,

    Does your daughter have a schedule of her daily routine with her in the classroom? I mean do they have a visual schedule posted so that she is AWARE of what change or transition is coming next so that she doesn't go into anxiety mode. Trust me, I also have AS (Asperger's Syndrome) and when I feel like something is very confusing, I go into fight or flight. I would suggest that they have a special "calm area" which is free from the SENSORY INPUT that triggers her outbursts and it should be almost neutral. I think if you try to teach her "I need a break" with a visual cue when she is becoming overwhelmed, it may be helpful. Also, when you attend the next meeting; ask them if your child has a visual schedule posted in the classroom to help her understand the sequence of events which occur. What seems to trigger her outbursts? Has the school done a functional analysis on what is the function of her behavior? Has the school provided her with a Positive Behavioral Plan as well? Does the school provide her with an activity schedule with the steps of the activity to be completed broken down into steps which she can visually interpret? Is she given a visual cue to help her understand that she needs to take a break as well? Children and people with autism can be overwhelmed when WAY TOO MANY SENSORY changes occur unexpectedly. Do you know what kinds of "warning signs she demonstrates?" Ex: will she start to shake when she feels like it's going to begin, does she try to run away from staff when she is starting to go into a meltdown? The worst thing that people do when trying to calm people with autism is tell them "calm down! STOP!, ect." I have to physically restrain my students if they become a danger to themselves or others, but I do it without any verbal interaction as much as possible. I also will try to take them into a part of the room which is free from the trigger if possible. I would go to your regional center representative for help as well. If you possibly could give me specifics about what happens at school, I may be able to offer some suggestions.

    Troy in Downey, Ca
    AspieTeacher (I also have Asperger's Syndrome)
    I'm an autism support teacher too.
     
  5. Aspie_mom

    Aspie_mom Rookie

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    Oct 3, 2006

    Your daughter does not seem to be in the right placement. I can understand your desire to have her in the regular classroom, but she's not progressing there.

    Discipline that you would apply to a neurotypical child will not work for an autistic one. I do not believe that your daughter is being manipulative. She's crying out for an environment change at school.

    You mentioned changing school districts as the problem. That contributes to things, but I would say the larger problem is the difference between kindergarten and first grade. The other kids in her class are starting to form friendships and engage in real interactive play. She can't keep up with that social scene. She's frustrated. Plus, academic requirements are bumped up.
     
  6. Charyl

    Charyl Rookie

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    Oct 3, 2006

    Thank You

    I just wanted to thank you for your responses and suggestions. :)

    After we gave the school our suggestions on how to handle her, they still said it wasn't working and she was still being disruptive. So, my husband took off work one day and spent the day shadowing my daughter and the Aides. It turns out that yes, they were being very leniant with her and letting her make to many decisions that she shouldn't be making. They were giving in to her tantrums (which showed her that she could control them and get her way just by screaming). The staff was shocked at just how well-behaved she was when my husband was there. They were shocked at the way he immediately calmed her fits and made her do her work. I think they got a lot of info out of it and hopefully they continue to do the suggestions so she can progress. The day after my husband visited, my daughter came home happy and calm (and loving). They must have applied the techniques and finally commanded my daughter's respect that they were in charge, not her. :)

    My husband also noted that there were too many aides dealing with her all through the day, and certain times of day, they didn't have an aide with her (when they should). We're hoping they cut that down to just one or two regulars.

    He noticed that it wasn't so much sensory problems that was setting her off (although I'm sure frustration over understanding school-work is a part of it)---it was just that she didn't want to be forced to do the worksheets that the class was doing (she'd rather draw). To the person who responded just above----if you knew my daughter, you'd see how intelligent she is---and yes, (ask any school she's ever attended) she can be very manipulative when she wants to get something (such as throwing an all out fit so she doesn't have to do classwork). Much like a toddler. You can really tell the difference when she's truly upset and when she's just putting on a show. :) While she is very similiar to many autistic people, she also shows a lot of different qualities and is very strong-willed. She's also been very happy with the way we discipline her at home (not severely, just what she needs) and if this school would just learn and continue it on in class, I believe she would progress well. As of now, I've been having to teach her here at home (math, reading, etc...) after school---because I keep her calm so she can learn and I know how to visually teach her. They really have underestimated her--in that they use her disability as an excuse to let her get by with things we know she can control. They encourage her to have a tantrum, instead of using the words she knows (such as "I want help please", or "Boo-boo tummy", or "I want to draw please", "I am tired", etc...).

    As well, we did not just switch school districts---we moved cross-country. So, yes, I think that has had a profound impact on her (as it would any child). My daughter needs the interaction from a class of "normal" kids. There is no other 'placement' for her in this school. The only other place is the profoundly-retarded classroom, which my daughter would learn nothing from (every school she's attended agrees it would be "tragic"--to quote the principal). She would not get the social interaction she needs---or the academic challenge (she left her last class 'top of the class' academically). She would also begin imitating behaviors and sounds she hears from the more disturbed and needy kids. She is very intelligent---just non-verbal and learns very visually. It is the job and legal obligation of the trained people in the school to figure out her needs and meet them to integrate her in the class that would best suit her (if they are not going to offer any other viable alternative). I agree that one of her major problems is the transition from kindergarten and how much more is expected in 1st grade (sitting at a desk, doing homework, etc...). I'm hoping they can get her through it without giving up on her and throwing her into a class that wouldn't benefit her---she's already slipped through the cracks too much when she was a pre-schooler.

    I am also hoping that they can keep her in class as much as possible (except for speech and OT), but whenever it comes time to learn something such as math (which tends to upset her), the aide can take her to a close-by 'quiet room' to work with her visually and one on one. I don't think that just by listening to the teacher (much of what the teacher is saying, my daughter just can't understand) that she's truly learning. That way, not only is my daughter learning more---the classroom is not bothered if she does decide to throw a tantrum over it. I'm also hoping they integrate that visual schedule system suggested (she had that in her last class) and give her a 'quiet area' to retreat to if she gets over-whelmed. When she was screaming, she didn't give much warning---just a loud shriek, which has been allowed to progress into a full tantrum (my husband showed them how to command her attention and curb it).

    Anyway, I'm sorry this has been so long. I will update you on her progress soon! Thanks again, for your replies! :angel:

    Charyl-
     
  7. Charyl

    Charyl Rookie

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    Oct 3, 2006

    I forgot to mention, I would also like to recommend the book "Overcoming Autism" to everyone---in particular "Aspie-Mom" :)

    Thanks,
    Charyl-
     
  8. SpecialPreskoo

    SpecialPreskoo Moderator

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    Oct 3, 2006

    You may have to get with an advocacy group to let the school system know that you mean business and that you want what is right for your child and you know it is possible for it to be done. If they need training, then by george, someone needs to train them. Lack of training is no excuse.

    I teach preschool SPE and I hate dealing with some schools that get my students going in to K. I inform them on what to do, how to do it, etc. and yet they won't do it then come to me griping when they are at their wits end with the child. HELLO!? Did you do ______? WHy of course not! That would be tooooooo simple! *sigh* some people.

    http://www.reedmartin.com/specialeducationresources.htm
    OHIO:
    Leslye Goldman & Associates
    Attention Deficit Disorders Council of
    Greater Cincinnati
    P. O. Box 198065
    Cincinnati, Ohio 45216-9998
    (513)731-8331 ADDC1988@aol.com ADDC1998@aol.com
    Lynne Petkovic, M.Ed.
    Parent Advocate
    22550 Westchester Road
    Shaker Heights, Ohio 44122
    (216) 752-7592
    jpetkovic@aol.com

    Parent Mentors of Ohio

    Leslye R. Goldman
    Educational Advocate
    Leslye Goldman and Associates
    Voice: 513-469-0525
    Mobile: 513-545-7071
    Fax: 513-469-0526
    Email: leslye@leslyegoldman.com

    http://www.ocecd.org/ocecd/about/trainers.cfm

    http://www.cincinnatichildrens.org/svc/alpha/c/special-needs/resources/advocacy.htm

    http://www.autismohio.org/index.php?option=com_content&task=view&id=109&Itemid=75

    Hope your daughter can get the appropriate help and education she needs!!

    Lori
     
  9. SpecialPreskoo

    SpecialPreskoo Moderator

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    Oct 3, 2006

    Hmm... on that first link I posted, if you go to it, then you can get those people's email addresses. :)

    Lori
     
  10. Grammy Teacher

    Grammy Teacher Virtuoso

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    Oct 3, 2006

    I have an autistic boy in my class. He is 5 and he is blossoming more everyday in my "regular" class. Last year, he was in the 4 year old room and they did this intensive therapy for a whole year. There were so many people working with him every single day and all I can say is, it was not right. He needed to be LEFT ALONE! Kids just need to be kids, no matter what is wrong with them.
     
  11. Aspie_mom

    Aspie_mom Rookie

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    Oct 4, 2006

    Autistic kids are often incorrectly labelled as "manipulative". Your school district doesn't have an autism program?? My son is not in what you call a "severely-retarded" class. He's not in a regular classroom, but works up to grade level.

    Good luck to you and your daughter. If the placement is wrong, problems will come up again.
     
  12. Charyl

    Charyl Rookie

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    Oct 4, 2006

    Unfortunately, they don't have any kind of class like that, especially not one specifically for autistic kids. :-( If they did, and it was very educational, I would definitely consider placing her in it (at least for a couple of years).

    They almost act like we're the first family at their school who has a child like this! But I find that impossible because of the increase rate of autism. They almost act like they don't have the money to do anything extra for these kids (even though they were rated a "School of Excellence"). But sooner or later, they're going to discover that unless something drastic happens, they are going to be over-flooded with kids that need all this extra help. Anyway, take care!

    Charyl-
     
  13. Aspie_mom

    Aspie_mom Rookie

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    Oct 4, 2006

    I'm very sorry they don't have better autism services in your area. In my county, they have an Asperger's classroom which includes grade-level lesson plans and skills training. It's not for cognitive delays.

    Maybe having to deal with your daughter will force them to come up with a better plan for other students. Your daughter might be the first one they have encountered, but she won't be the last one.

    btw, my county didn't have good offerings as soon as 5 years ago. even now, they are undergoing an autism audit to see if they are addressing the needs of this population of students.
     

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