Parents of an Austistic Child

Discussion in 'Special Education Archives' started by LuvPreKTeachin, Jan 25, 2005.

  1. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Jan 25, 2005

    I have a huge problem/concern. I am a special education shadow for an autistic child in Kindergarten. I have been with him since pre-school. He is a severly autistic, non-verbal and un-potty trained child. When I started working with him in preschool, December 2003, he did nothing.

    Some examples:
    - Mom carried him
    - He ate with his fingers
    - Drank from a sippy cup
    - Would sit all day in one spot if you would let him, could care less about anything.
    - Never, and yes, I mean never made eye contact
    - Wouldn't sit at the table to eat. Would run around and grab food off of whoever's plate was closest.

    Some examples of what he now does:
    - Walks into the school and into class
    - Eats with a fork and drinks from a cup or straw
    - "Works" and "does" things
    - About 3 or 4 times out of 10, will look at my eyes when I call his name
    - Sits at the table for meals and during group time
    - Takes off his shoes, undresses himself, can put on his pull-up (still wears diapers only at home) and dress himself
    - Knows his alphabet, numbers, colors and shapes (can point to them and match them and put them in order)


    Of course, he only does these things at school. For some reason, "He won't do anything at home."

    Anyhow, now that I've "introduced" you to his world... here is my problem. His parents! I hate to say that they don't care but they don't seem to. He has so many people working with him and them, but they won't be consistent at home with the things that we are doing at school. We have sent home stuff and they don't use it. He is making WONDERFUL progress with the PECS system! He can take his card out of his notebook and bring it to me. I am making a system for them to use at home. I just don't think that they will use it! What can I do? I'm at a loss!

    I didn't think anything could surprise me about them. However, they didn't realize for a week that he had lost his first tooth. They came in on Friday and mentioned it to us and we were like, "Yeah, we noticed it Monday."

    I am trying my best to be a polite, professional but it is hard! I just want to tell them what I think! HELP!!!

    Crystal
     
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  3. ViolaSwamp

    ViolaSwamp Habitué

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    Jan 25, 2005

    You rock!

    Wow you rock!!! All of that in one year!!! Good for you!!!! :angel:

    I totally know what you mean!!! I had an autistic student who was potty trained (#1 only) at school, but wasn't at home. Basically because an older sister changes her diaper there. Must be nice, if I didn't have to change my kid I wouldn't bother potty training either (well not really...). :p

    We had another autistic kid who was taught to brush his teeth at school (just one of many things he "just wouldn't do at home"). Mom asked if he was still doing it at school. The teacher said that "No, he's mastered the skill, now he needs to be doing it at home." Hello? Can you parent here? Same mom recently had a second child. Teachers commented on her lovely blue eyes. Mom said, "They're blue?" :confused:

    It sounds like your kiddo has so much more potential. For him to make all of those gains in such a short amount of time is great. It is a real shame his parents don't see it. I know sometimes it is easier in the present to do things for a kid than to teach them to do it themselves, but they really need to think about their future too!!! :eek:

    Keep up the good work and know that you are not alone. It is an epidemic I've seen in several sp.ed. classrooms. Not that that excuses it! ;)

    Sorry about the overdose of "smilies" I just couldn't help it!
     
  4. ellen_a

    ellen_a Groupie

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    Jan 25, 2005

    My whole class has these silly things they won't do at home; they're simply expected to do them at school, though, and I don't present it as a choice so it just gets done. Even really goofy stuff--I have a kid who will NOT drink juice at home but will drink any kind of juice I give him at school. I've learned to pick and choose my battles with parents, make a big deal out of the stuff that really matters to me, and build independence in my classroom whenever possible. I offer systems, visuals, etc. to parents--if they don't take it, I say "okay" but I often remind them of the way things are at school (i.e. at school, we can open doors on our own or at school, we will use a plate to eat lunch).
     
  5. ViolaSwamp

    ViolaSwamp Habitué

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    Jan 26, 2005

    Ellen you are right. We just have to do what is right and control what we can. When you talk to the parents you might remind them that he does those things at school, they might just choose to try out some of his new behaviors a few times. You may try being quite frank with the parents. I'm a sub, I've basically become the designated sp.ed. sub for our district. I've learned so much from all of the teachers and aides. The teacher of the toothbrush boy is quite tough on that mom. I know it sounds weird. You'd have to know the situation. Long story short, she's sued their previous district(s) and been extremely wary of all staff. This teacher has been very blunt with this mom. Basically her kid is autistic, but also severly retarded. The teacher told mom that the MR is a much bigger influence on his behavior than his autism. I think it was pretty straightforward to tell her that it's their job to brush with him at home too. For whatever reason mom will listen to this teacher. She even seems to like, respect, and confides in her. Which may be crossing some boundaries, but I don't know. Supposedly he's a fourth grader. Either they decided he needed to be in school finally or the teacher's doing something right. This was his first full year of school. Mom has pulled him out of every program (due to lawsuits, etc). I think the longest he was previously in school was 6 weeks.

    Of course I can't speak for your situation. One never knows how a person will respond, and I can't say that your supervisor would necessarily agree with bluntness.
     
  6. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Jan 26, 2005

    Thanks!

    I just wanted to thank you guys for your responses!! Just hearing that I'm not alone helps! I had a visit today from our school system's district coordinator. She was there to observe another teacher but stopped in to see the EC kids. (My student goes into an EC class for an hour and a half a day.)

    Anyhow... she and I were talking about his PECS system and about how he was doing with it. I mentioned that we were making a notebook to send home. We discussed the "home situation" and she said that "we, as educators, can only involve our parents as much as they want to be involved". I never really looked at it that way. As hard as that is to accept, I guess there is no point in beating my head against the wall if they just aren't willing to be involved in his life, outside of the home.

    I also talked to the EC director for my school system. She wants us to send home a video tape of my student's PEC session for his parents to watch. (So that they can see how it works.) Then we are going to talk with them and see if they are willing to use (or at least try) the system at home. If not, we aren't even going to bother sending it home. I do NOT want him to be trying it at home and them ignoring him! I'm afraid he will get the wrong impression. With PECS, if they hand you the card... you have to be willing to give the item. I don't want him to fail with this program simply because they don't want to do it.

    Ellen: I agree with what you said about how they will do these things at school because they know that it is expected. It is SO true!! After a year and a half with my student... he knows that I make him "walk the line." ;)

    My student literally isn't expected to do anything at home. An early bedtime for him is 11:00pm. (School starts at 7:20am.) His mom said that she doesn't think he understands that it's time for bed because when she puts him in bed, he keeps getting up. She said that she finally started unplugging the TV when she and her husband go to bed. She said that she figures that he eventually gets bored and probably goes to bed. He has busted his head open and had to get stitches twice because she lets him and his two brothers jump on the bed.

    Well, as you can tell I'm a "long-winded" writer... so I'm going to go. Keep the emails and suggestions coming!! They are helpful! :)

    Crystal
     
  7. clarnet73

    clarnet73 Moderator

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    Jan 26, 2005

    It's awfully hard sometimes to try to get the parents ot understand that it's OK for their child to have responsibilities, to not get their own way all the time, and to do things they may not necessarily choose to do...

    I'm at a private school (paid for by the school districts, usually, but not with out a lot of fighting from mom and dad, i'm sure!) for kids with autism... you'd think that that would mean that parents would actually want ot work with their kids and do what needs to be done... all of our kids who use PECS either take their book back and forth or are supposed to have their own system at home... ok, fair enough...

    we do daily notes to parents regarding things that happened during the day, etc... we have parents who NEVER open the notebook, respond to notes, tell you about med changes, etc...

    My class sends home daily homework... I use the same sheets until they're completed, and seriously, nothing I send home should take more than 5 minutes... homework has been done 3 times this month... I got it back today with "he pointed to the right answers, but wouldn't pick up the pencil." HELLO!? he's WRITING HIS NAME at school... so the homework I sent home today (3 letters to write/trace) has explicit instructions and the note "he knows how to do this ,we do it frequently at school." We'll see...

    Ellen, I SO see the "will do it at school" thing... his home program chases him around the house (literally) until he sits somewhere to do a task... yet he'll sit in his desk for up to an hour at school... it's so interesting, isn't it? At school, he'll sit nicely, eat lunch using utensils, etc... yet at home, they "can't even get him to sit down to eat." I want to scream at these parents some times "it's not going to kill them if you give them some responsibility... they'll survive if you don't always give them what they want. and please, please, please MAKE them communicate with you!!!"
     
  8. Grammy Teacher

    Grammy Teacher Virtuoso

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    I NEVER quit "harping" at my parents until I get results. Don't give up.
     
  9. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Jan 28, 2005

    Videos

    Do you guys know of any documentary-style videos about Austism. I don't think mom and dad are very familiar with how "normal" autistic children's lives can be. I am beginning to wonder if they think that because he is labeled autistic, he will live life as an "invalid." I would love to find some videos to show them how other parents raise their autistic children... aka: they aren't helpless infants. I found one on a website but it was around $80.00. I have been checking the Discovery Health Channel, because they sometimes have good documentaries on, which I could tape for free. I haven't have any luck finding one on autism.

    Crystal
     
  10. SpecialPreskoo

    SpecialPreskoo Moderator

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    Jan 28, 2005

    Not sure about videos but if you can find the some info on Dr. Temple Grandin (sp?) that would help. She is autistic and has her doctrate. There was a documentary about her and other autistic adults a while back. I can't remember the title or even where I saw it.
     
  11. SpecialPreskoo

    SpecialPreskoo Moderator

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  12. TeachWildThings

    TeachWildThings Comrade

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    Jan 28, 2005

    Would love to see some more videos of the "possibilities" and not just worse case scenarios. People's impression of Autism is usually vegetables or Rainman...We know it can be that at times, but also so, so much more! The spectrum is huge! I've seen so many parents afraid to discipline their "specail" kids. Maybe they feel the child has so much going on they make an exception....but all kids need & benefit from boundries. I just finished a special assignment for behaviroal intervention with a child. Child is now completely & totally appropriate at school. I even stopped shadowing some time before I left. However, home & after school day care were STILL issues. Part of that problem was that no one could let go of past behaviors, "once rotton, always rotton". Or, they've NEVER been able to do that before so expectations/behaviors are deemed impossible. I have found though when YOU let go of your own expectations of what a child is capable/not capable of the child each and every time will astound you in what they CAN do!
     
  13. TeachWildThings

    TeachWildThings Comrade

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    Thanks SpecialPreskoo! You were posting as I wrote! I've read a bit of Temple's writing, I was unaware there were videos too. I have to say I have really enjoyed browsing your links & reading yours & others posts. It was one of the most comforting things to find these forums & especially people in the field of ECSE. Amanda has set up an amazing site that allows venting but still somehow manages to remain positive and extremely encouraging!
     
  14. ellen_a

    ellen_a Groupie

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    I love Grandin--I've read two of her books, they're amazing. Her mother actually just wrote a book about raising her! Donna Williams is another writer who focuses on her experiences with autism.
     
  15. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Videos

    Wow! Thanks for all the helpful links! They are calling for snow, sleet and freezing rain this weekend... so I'll have plenty of reading time! :)

    Crystal
     
  16. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Feb 5, 2005

    I just thought I'd stop in and "brag!" My student learned how to snap his overalls yesterday! (That's all his parents dress him in because they say he won't wear clothes at home.) He's been working on it for weeks now and has been getting really frustrated. However, he just keeps pushing my hand away. He refuses my help. I was so excited! He looked up at me after he snapped them and had the biggest smile on his face and gave me a hug!! That is what makes my job worthwhile... his accomplishments! I just wish that his parents would appreciated those "little things" too. Oh, well... I can take pride in him if no one else will.

    A PROUD TEACHER,
    :D Crystal
     
  17. Dana3

    Dana3 Rookie

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    Feb 10, 2005

    Hello,

    I was reading through all of the responses, and as a parent of a child with autism, I am sadened to hear that there are parents out there that are not working with their children at home. My son is 7, he is non verbal and we use PECs (cards, schedule boards and binders are all over our home), we have a sensory diet for home and we do in home therapy which is now at 10 hours a week. I work 1:1 with my son every day before school and after school and on the weekends as well. We work very hard with him, and make a point of doing at home what is being done at school, sometimes he will master a skill here and not do it at school for some time and vice versa. Problem being that generalizing is difficult for him and the process usually is that he will master for one person, then eventually make the connection to generalize. I do know many parents with children with autism, and yes some want to leave everything for the teachers and are completely unwilling to take any time to set up an environment at home that will help their child learn and become indepenent. To those of you who have parents like this to deal with, just push and be vocal, it may seem like you are wasting your breath, but you may eventually get through :love: Thank you :D

    Dana
     
  18. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Feb 10, 2005

    (I'm going to call him John so that I can stop typing 'my student' and 'my little guy!' :) )

    Dana,

    It is wonderful to hear about parents like you!! You are truly inspiring! The mother that lead the 'PECS - Phase One' course I attended some time ago has twin daughters with autism. She mentioned to us that she had been using the program with her girls since they were a year old. (Which I've been told is an early diagnoses age. John wasn't diagnosed until he was almost four.)

    I guess the thing that is the hardest for me is the fact that I don't have children. I kinda feel like if I say something more bluntly, to encourage John's parents, they are going to look at me like 'you don't have kids... why are you trying to tell me how to raise mine.' Some of the other teachers mentioned to me that they were pretty sure that his middle brother has a slight touch of autism, but that since John's is more severe, he was just sorta pushed aside.

    They just don't seem to take an interest in anything he does. When we sent home the PECS information survey to see what his likes, dislikes and interests were... they wrote down that about the only thing he eats is plain cereal and potato chips. He likes to play on the computer, the playstation, the gameboy and watch TV. I just can't see letting my child live like that, autism or no autism. (And that is the kinda lunch they fix him everyday. Two slices of lunch meat, a bag of potato chips, a bag of plain cereal and fruit punch juicie drink.)

    When I talk to him he is just fixated on my mouth. If he holds something up, like a red crayon, I have to tell him that it is a red crayon. And if I don't talk to him, he will put his hand on my mouth and try to make it move. He seems to be starved for communication. I don't think that they talk to him. When mom drops him off in the morning, she puts his things away and walks out. When mom or dad pick him up afterschool, they don't say anything. His paw-paw is the only one that I have witnessed (in two years of working with him) talk to him. One the days that he picks him up, he asks him if he had a good day, etc. Even though John can't talk, that doesn't mean that they can't talk to him!

    Well, now I've rambled enough... my point is to say thanks for all that you do with your son. It gives the rest of us hope! If you have any resources that you, as a parent, have found helpful... I'd love to hear about them! Or if you have any ideas as to what you as a parent would like to hear from a teacher. You can post them here, PM or email me!

    Crystal

    P.S. John will be 7 in July.
     
  19. Dana3

    Dana3 Rookie

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    Crystal,

    Thank goodness John has you and his paw paw. I guess, as a parent, I have seen the most success with just keeping him occupied and not allowed to sit and do nothing. He was dx at 3 and began Early Childhood shortly after, where he had an awesome teacher who helped me learn as well. It was hard at that stage since I was still in denial, but she kept on me and I now thank her whenever I see her :p We also began ABA at that time and I have to say, this has been a life saver for us, they taught me how to determine his weaknesses, how to develop programs, and most importantly they taught me how to teach my son. These programs give our kids the repetition they require to learn and help to educate the parents so when the day comes, the parent can take over as therapist. A sensory diet is a MUST for our kids, and I have found that T.E.A.C.H.H is a brilliant way to combine academics AND sensory. He has been more successful since we started this system: we put out about 8 different buckets (rubbermaid shoe boxes), inside one may be 3 books to choose from, the other may have 3 large pencil cases (zipper with a see thru panel) each with manipulatives for a project, the other may contain file folders....you see where I am going ;) He is to select what he wants to work on, and when done he puts it into the "All Done Basket" (aka my laundry basket). We had such success with this system that the school is doing this way as well :D I am a mom who needs to talk to the teacher daily, we both actually prefer this so that we know we are working together as a team. I hope something in my rambling is what you wanted to know, I just love talking about my son, I could go on and on!!! I wish you luck with John's parents, and I hope for his sake they will come around, and soon!

    Dana :p
     
  20. ellen_a

    ellen_a Groupie

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    Feb 10, 2005

    I run my middle school classroom based on TEACCH ideas and techniques--I love it and I'd really recommend it. I'm self-taught, for the most part, with some minor training from my agency, but its a really great paradigm.

    Ellen
     
  21. clarnet73

    clarnet73 Moderator

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    Dana3,

    THANK YOU for what you do for your son... I work at a school for kids with Autism... we have the whole spectrum, and I think we have the whole parent spectum as well... parents who are REALLY involved, write notes back every morning so we know what's going on, help their kids complete homework, use PECS and other communication devices, make sure Electronic devices are charged before coming to school, and work with them at home... and parents who, for whatever reason, do NOTHING with their kids at home but let them sit and stim on whatever they feel like, don't even read daily notes much less respond...

    but THANK YOU for being an involved parent who helps her son and wants to help him be productive. :)
     
  22. ViolaSwamp

    ViolaSwamp Habitué

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    Feb 11, 2005

    Dana You are great! Parents like you help keep teachers going. Thank you also, for so politely, mentioning that transference could be the reason for these kiddos not being able to do things at home. I do not have formal sp.ed. training, just some time "in the trenches", and my complaints against parents were not fair. I forgot that not everything is explainable about autism, and it can be extremely overwhelming for parents. I apologize to anyone I may have offended.

    I also wanted to say that I have also used TEACH (I'm sorry I don't know if it has 2 Hs or 2 Cs). For the most part I used it while in someone elses classroom, but it has been great. I've used it preK through Middle School. I would strongly recommend anyone who works with autistic students to check it out.

    Crystal,
    I had a kiddo who would only eat cheese puffs, cheezits, top ramen, french fries and watermelon. I had him for 5 weeks in the summer. I put new stuff on his plate all the time. Sometimes it just made him mad. I think it is just part of his routine. He wanted the familiar.

    That's soooo sad about John's family not talking to him! I hope you get through!
     
  23. Dana3

    Dana3 Rookie

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    Feb 11, 2005

    Wow, thank you! And thank you all for letting me post, even though I am not a teacher. You all sound very determined to help your kids be successful and I am so grateful that teachers like you are fighting for our special kids :)



    Good Luck to everyone,

    Dana
     
  24. Mamacita

    Mamacita Aficionado

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    Feb 11, 2005

    Oh Dana. ALL parents are teachers. And the parents who interact in positive ways with their child's school are the best teachers of all.
     
  25. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Wow, I have to catch up on the posts!! :)

    I agree that TEACH is wonderful. I have attended several workshops offered by them! I would love to get them more involved in John's home life but I'm not sure how and if I should. I don't want to overstep my boundaries. We have send home information and resources but they seem to fall on deaf ears.

    His preschool teacher last year made him a ton of "shoebox activities" and once he understood that he had to do them... he did great! (He hated being made to do anything last year!) We have since returned them to the preschool department for the other autistic children to use, since he is working on more academic stuff.

    I have also tried the 'putting new food of his plate' stuff and it generally doesn't work but I figure I'll try. Maybe one day he'll try something new. It's kinda hard because he doesn't buy school lunch, they pack his.

    I totally agree with ViolaSwamp about overwhelming parents. I think that's why I have such a hard time about being blunt and/or firm with them. I don't want to overwhelm them or make them angry or uncomfortable. At all of his IEP meetings we have asked mom (dad doesn't come) what types of things she would like him accomplish and she just says 'I don't know' and then sits there. He had his last IEP written in November and we are going to meet again, here soon, to re-write it because he has accomplished his goals from the one in November. Another teacher suggested that we be blunt and just outright ask, "What do you want for him?" We'll see how that goes. The EC teacher is "in charge" of his IEP and those things, so it will be up to her to bring it up.

    I agree with Jane... parents are a child's best teacher! Reguardless of who your child's teacher is... you are the person that will forever change their life!!!

    Thanks to everyone for their continued support and helpful advise!!

    Crystal

    P.S. By the way, we are sending the PECS session video home Monday. His speech thrapist is going to "bump into" mom in the hallway Monday morning and talk to her some about it. Wish us luck!!
     
  26. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Feb 18, 2005

    Good news! Mom seemed willing to try PECS at home! We are going to video a few more "planned" and "unplanned" sessions. (Ex. moving to different classes, in different settings and with different teachers) Hopefully, Mom and Dad can see how the system works... outside of a chair-setting. Afterwards, we are going to send the system home! Keep your fingers crossed...

    Crystal :)
     
  27. M-M

    M-M New Member

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    Feb 20, 2005

    Not at HOME !

    HI all

    I'm NOT a teacher sadly (I'm one of those who annoy them, a parent !). If I may offer a view from the other side here. First a short background, my son was diagnosed 6 years ago with Aspergers, 4 of those years he was put in mainstream and unsupported at all. he has now, done 2 years at an UK SEN (Special educational needs unit). Progress has been made, but they said they can't do any more so we're in the porcess of trying for full-blown special school options.

    A point was raised Parents didn't carry on where school started progress-wise. My child compartmentalises EVERYTHING. what he does at school he will NOT do at home, even if you mirror what the teacher does. To him, school, and home are two entirely seperate places, where he does two different things. Teachers teach, parents parent ! I have assisted schools here by sitting with my child helping them, to find ways to improve communication, this, was after, the class teacher asked for a 'shadow' (I'm unsure that the UK equivelant is, but here it would be perhaps a 'helper' or a student teacher, to 'keep him out of the way' while she taught more 'able' pupils. I naturally objected to this, it was hardly inclusion.

    AS kids get frustrated 'conforming' to the accepted view of behaviour, and,while they may eventually show indication they are learning these things, at home, my child reverts to typical AS behaviour the second he enters the door, he gives NO Indication he has acquired any skills at all half the time. It's as if a switch has been thown. Perhaps some appreciation that what we parents experience, will assist before condemnation for apathetic parental involvement is levelled. I get DAILY Updates of everything my child does, I insisted on it. When progress is made I support it, and encourage it at home, my son, will NOT However, do half of it for us as parents, he says "That, is for SCHOOL, Here I can be ME.."

    Have teachers missed the point of AS ?
     
  28. clarnet73

    clarnet73 Moderator

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    Feb 20, 2005

    I don't think people have missed the point at all. I appreciate your view, and it IS a helpful reminder that our AS/ASD kids DO have trouble generalizing behavior, information, etc... I work at a school for kids with ASD, and we see this ALL THE TIME. I think the difference between the original poster's frustration and what you'd describing is one thing... you're TRYING to help... and i applaud you for that!!! I *know* it's difficult for these kids... one of the little guys I work with, for instance...

    PECS user, has been using them both at home and at school for several years (he's 8). We've FINALLY gotten him to realize that he can open his book, look through it, and make choices... he isn't just limited to the things put on top of the book. I've seen TREMENDOUS growth in this since the beginning of the year. Although they use the same book and PECS at home, he will *not* make those spontaneous requests at home that he will at school.

    I think you're doing everything you can to help your son, and I applaud you. It's rough with these kids 7 hours a day, I can't IMAGINE home life...

    The difference between what you'd describing and the original frustration was that, from my understanding, the family in the original posting didn't do ANYTHING to help. When you have a kid with *no* voice and, essentially no communication system, who *does* have a way to communicate, it's frustrating to have parents who won't let their child use it. With lower-functining kids, especially, we often-times just want the kid to do some things to act appropriately... we don't want to "take away" their autism or anything else... we just want them to be able to function to the best of their ability. :)

    And oh, you're not the kind of parent who annoys teachers... you're the invovled kind who does everything they can to advocate for their child to help him do his best... you're the kind of parent we like. :)
     
  29. M-M

    M-M New Member

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    Feb 20, 2005

    AT home

    Interestingly, my lad often and despite the compartmentalising (Is there such a word !), he now and then provides more academic output spontaneously than he does at school. His school says he has never produced a full A4 page of anything, yet I sent in 10 of them he rattled off about our cats, and, how he wrote down number of the hours in a day, minutes in an hour, minutes in 10 YEARS (All without any calculator). I did suggest that rather than adhering rigidily to the curriculum and those prohibitive (guidelines !), poor teachers are strapped with, they could take a lead from that and build on it. He was relating what HE wanted to talk about,it was a START.

    I feel, first establish communications properly, or as well as is possible, then, the curriculum they didn't agree. Hand in hand was the guideline, but it wasn't working. What I do is take a lead from my lad, he wanted to discuss why the cat was sick and ants were eating it (Yuk!), so I went with it and opened the discussion to different colors, different types of cat/ants, types of fence the cat saton (Wood etc), etc, and downloaded stuff on ants he was fascinated with it. As any teacher will know, this, is how communication WORKS.

    My only problem now is he is asking where baby cats come from ! (Perhaps picking them up at Walmart isn't the ideal answer !).

    Is the curriculum at fault ? It's not child first oriented ? That he is assessed via a confusing array of very obscure set of results and statistics, I felt, gave no real indication as to what he was actually DOING or progress made (And I couldn't follow half of it either !). I'd much rather see officialdom taken out of it too, if it was down to us and the teachers at the cutting edge and no-one else, we would progress a **** site further and quicker.
     
  30. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    M-M - I appreciate your imput. I also agree with clarnet73... you don't annoy teachers. At least you have a voice and are using it.

    The parents that I have don't voice anything. I would LOVE for them to tell me what their goals are for him! Dad didn't even want him coming to our preschool program last year. He said he was fine at his in-home daycare. (Might I add, that when a home-visit was done over the summer at his in-home daycare... he was sitting on the kitchen counter taking food out of a pan while it was cooking. Even now, the caregiver says he will only drink from a sippie cup and eat with his fingers at his in-home daycare.)

    When the parents go out in public to restaurants or to the grocery store... they take the older two brothers and leave "John" with family members. That is exclusion!!! I go and pick him up once or twice every few months and take him places. We have been to the Children's Museum, the mall to ride the carosel, McDonald's. Just to get him used to being around places that will be around all his life. My point to them is that he will not always be a child and they will not always be around. I want to help "John" become somewhat independant. As much as his ability will allow. I know he may not ever be quote unquote "normal"... but he is smarter and is more capable than they are giving him credit for. He is SOOOOO smart and it kills me that they don't seem to see that! It seems like they are just willing to accept the fact that he has autism and that allows him to live as an invalid. They are handicapping him... not the autism.

    I'll put it to you this way... he is so smart that the computer teacher told me the other day that "John" is doing better in computer class than his brother in second grade! He loves computers and can use them 99% independantly! (Loading CD's, programs and navigating where he wants to go.) His brother's teacher said that she has problems with parental communication as well. So, I know it's not just with "John"... it's with all of the children.

    I understand that children will sometimes do things at school and not at home. But I feel confident that "John" can do them... he just won't. For the last 6 years, he has been allowed to do as he pleases at home. They don't do anything with him at home. I have witnessed this myself. When he goes home, he roams around the house watching TV and playing videogames. Mom doesn't even try to help him with his homework... she just does it. At school, I do hand-over-hand with him. (That helps him with an OT goal.) We have sent home item after item to use. When his OT sent home a brush for home and in-home daycare... they said he didn't like it so they stopped! He loves being brushed!!! At school he will get the brush and bring it to me, if he wants to be brushed.

    I'm not sure what the term "shadow" is used as where you live. But my job is a shadow and it is FAR from exclusion. It is my responsibility to ensure that he stays as inclusive as possible. There are several things that the class does that we modify for him... but if I can help him do something... he participates. He doesn't always like it... but then again he hates being made to do anything but sit. ;)

    There are days when Mom brings him in after 2 or 3 hours of sleep and I have to constantly pull him off the carpet because he wants to sleep. In my opinion, that is a parenting problem. They don't let their other boys wander around the house all night... unsupervised. Mom said that she doesn't think that he understands what bedtime is... because he keeps getting up and turning on the TV. They started unplugging the TV before going to bed, hoping that that would encourage him to go to sleep. However, he knows how to plug it back up. I just don't think that is safe. Especially since he has no sense of fear. When he was napping in preschool, he would fight sleep and so I would rock him to sleep. He is a child and he needs his rest. They let (yes, I said let) him climb on tables and counters. He has busted his head open and need stitches twice from jumping from bed to bed and from the nightstand to the bed. His paw-paw said he likes getting on the edge of the bathtub and jumping in!! (Do we not know what safety is?!?!?) :confused:

    They dress him in nothing but overalls because they say he strips at home. He won't leave his clothes on... so once he gets home, they just let him run around like that. He did that the first part of preschool last year. We would catch him and put them back on and tell him that he had to leave them on unless he was in the bathroom. Now, it's not a problem and hasn't been for the last year. However, now that we are are introducing potty-training at school... he can't unhook his overalls. I've taught him how to dress and undress and hook his overalls... he just hasn't mastered un-hooking them. He's working on it though! :)

    I hope that you guys don't think I'm mean or that I'm puposely trying to "bash" his parents... because that is not my intention. Imput from all of you helps me to better understand them and try to find ways to help them. It's just difficult for me after 8 years of working with children, "normal" and those with special needs... to have parents that I can't work with as a team. They don't seem to want to let me or the other teachers at school in to work WITH them. I would love to have them talk to me and tell me what they want for him. Reguardless of what is was... I would do it! I just want some imput from the people that are supposed to be advocating for him the most!!!!

    Crystal

    P.S. Sorry my post is so long!! :eek:
     
  31. Dana3

    Dana3 Rookie

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    Feb 20, 2005

    I think as a parent, it is hurtful to here teachers talking about parents that do nothing to help their children grow and learn....but I think we are all intellegent enough to know they are not lumping us all together. By no means do the teachers of this thread feel that all parents of all children with autism are letting their kids come home from school and sit in the corner. I do strongly feel, however, that no one, other than a fellow parent, could possibly understand the effort that goes into raising a child with special needs. The strain goes beyond the education, it is also learning to hold your marriage together, raise your other children, work, research autism, learn how to become a therapist and teacher, dealing with Doctors, special diets, medication, and even grocery shopping is an event that has to be carefully planned out and scheduled, or a trip to McDonald's and figuring out how to see a movie (how do you tell your 6 year old you have to leave in the middle of Shrek because her brother keeps signing "all done"?) I guess my point is that after dealing with all of the strain that each day comes with, we do like to hear the positive and feel that the school is there to help us and not judge us, but I am lucky and have a wonderful school that is willing to do whatever they can to help my son learn and be successful, and I go to bed every night knowing that I worked my --- off FOR my son and that I am doing everything possible, and so is his school. I think all teachers of this thread who express disappointment did so because they are passionate and want our kids to succeed as much as we do, and that makes them exceptional teachers.

    Dana

    Mother of DS, 7 autism
    Mother of DS, 10 aspergers
     
  32. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Feb 20, 2005

    Dana,

    It's parents like you... who DO work with your children... that give he hope! Your passion for your child let's me know that I am not alone in my fight for him. Since, I have no children... I know that is easy for me to "judge" and say the things that I say. I had a brother that was born with spina bifida and was paralyzed (I know I didn't spell that right!) so I know that it isn't easy raising a special needs child. My parent's marriage fell apart after he died because of the strain. You're right, I am not lumping you all together and saying that you just let your children sit in a corner. "John" is not the only autistic child that I've worked with, so I've seen the other side of it. I just feel like I am failing him and his parents. I don't feel like I'm doing a good enough job. I can't seem to get all the points on my "teamwork triangle."

    What you mentioned about researching autism and learning to be all the other things that your child needs... that is my key point. I have spent hours at home... and I mean hours... researching free local organiziations and articles about autism to send home for them. Because I figure with three children, they probably don't have time to sit at a keyboard and research. There have been articles that have sit in his bag for weeks and haven't been taken out. Even if you don't have time to read it... take it out so that I see that you take an interest in my help.

    As far as the special diet... I have never actually seen it used. Can you tell me a little more about it? (Or where I can get some information.) I have mentioned it to Mom and she insists that "John" will only eat potato chips and slices of lunch meat at home (which is what he brings for lunch everyday). So I just didn't say anything else about it. I would love to learn more about it though... even just to have as a reference for other parents.

    I also want to mention that we do praise Mom and Dad. She took some of the preschool teacher's advise last year and we praise her up and down! We were so excited! I do my best to encourage and support them. It's hard though when they don't talk to you. When Mom comes in in the morning, I tell her good morning. She puts his things away (which I've told her he can do himself) and walks out. She doesn't tell me good morning or tell "John" to have a good day, kiss him or anything. When Dad picks him up in the afternoon, I tell him that he had a great day or whatever. Sometimes he'll say 'that's good' and then sometimes he doesn't say anything.

    What you mentioned about the movie and signing "finished"... he doesn't have a specific communication system at home. No signing or anything. They said that he will take their hand to want he wants. If they can't figure out what he wants, then he'll start screaming and pinching. Eventually, they either figure out what he wants or he just walks off and forgets about it. Hopefully, the PECS system will work at home when they begin it.

    Crystal
     
  33. Dana3

    Dana3 Rookie

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    Crystal,

    You are not failing him or his parents, you are doing everything possible on your end (and then some!). The rest is in their hands. I can only imagine the frustration this poor child is feeling with his parents, I know I feel awful when I know my son is attempting to tell me something and we do not have a picture or a sign for it yet. PECs are vital to our kids, though I must admit I hate them and they are a pain to make and organize and hog up an entire counter in my kitchen, but this is how he communicates, why deny him that? Crystal, I wish you were working with my son, I really mean that, you are so dedicated and determined and I admire you and your will to fight!

    The diet I mentioned, is a GFCF diet, that is gluten free and casein free. Gluten is ALL flour ~ wheat, barley, malt (cheap sweetener in 90% of cereal) the only flour allowed is corn, potato, rice and few odd and terrible tasting ones. So basically no bread, cookies, cakes, turkey at thanksgiving (the baste has flour in it), most lunchmeat also have broth so are off limits for the same reason. Caesein is milk protein, milk is everywhere! crackers, cereal, bologna, hot dogs, waffles, and the obvious: yogurt, cheese....Our kids tend to have difficulty breaking down the proteins in their gut (called leaky gut), so these unprocessed proteins, called opiates, chain together and escape the intestines, enter the blood stream, reach the brain and have the same effect as if the child were given opium (heroine). How frightening! This also explains why our kids tend to eat the same foods, they are addicted, they are craving what is bad for them. We eliminated gluten and casein 4 years ago, within days my son finally began making eye contact, pointing, and even making vocal attempts at words. Eventually his gut began to heal, with the help off vitamin therapy (acidophilus, Super Nu Thera), and he now can tolerate the wheat, but if he has so much as one goldfish cracker (cheese) he is up all night. Every parent that I know with a child with autism that says their child has sleep problems, or doesn't sleep at all, this is a child that I have been told is not on the GFCF diet. Definately worth trying (GFCFdiet.com is where I got started, and Kirkman labs specializes in vitamins for kids with autism).

    OK, now I want to throw a question out to all you teachers.....I need some ideas for teaching my son to add, must be hands on/concrete. :D Thanks!

    Dana :love:
     
  34. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Feb 20, 2005

    Dana, thank you soooo much for the information on the diet! That's sounds amazing! I'm going to print out some information about it and pass it along to his parents and some of the teachers here for reference.

    We are still working on recognizing numbers and putting them in order. I can ask the EC teacher I work with and see if she has any suggestions for teaching adding.

    Crystal
     
  35. sleeplessohio

    sleeplessohio Rookie

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    Feb 20, 2005

    I have not read through all the replys, but as a parent of a child with multi disabilies, one of wish is autism, thank you for your willingness to put so much effort in helping your students! My husband & I have worked so hard to help our son become the most resposible, productive person he can be. And when we have the support of his school staff working with us it has always helped.

    It sounds very much like the parents just are not connected to the issues their child has. Maybe they do not know hat to do, or how to do it. It is easy to explain what you would like for their child to do at home, BUT if they are overwhelmed with the whole thing they need someone their showing them what to do, how to do it and helping them understand.

    I work as a parent teacher in homes with families of special needs kids. I have found these parents to be just that, very overwhelmed, stressed and not knowing what way to turn next. It becomes easier & less stressful for them & the rest ofthe family to just do the things for the child. But once I step in and explain how they are doing is effecting their child and show them how to go about things differently they start to turn around, slowly mind you.

    If your area offers a program for home parent teaching maybe you could give them a referral. These parents may surprise you and others ones the learn & understand their child better & learn ways to deal with his issues.
     
  36. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Feb 23, 2005

    sleeplessohio - Thanks for the post... I never really though about it that way. I guess it is easier for us to tell rather than show. I don't think we have a program like that here... but I'm going to check into it. I know that he gets homes visits, usually about 2-3 times a month in the summer. The preschool coordinator and his preschool teacher visited him last summer. I visited him once because I was afraid he wouldn't remember me during the summer, once school started. I didn't know him or his family very well then. I plan to visit once a week, if possible this summer. I'm assuming that his EC teacher will also make visits this summer.

    The hard part is that the visits aren't made at home... they are made to his in-home daycare. And to be quite honest... if I had children, I wouldn't leave them in that place! I've worked in daycare before and I can't for the life of me figure out how they are still licensed and in business! It's a sad situation really... because I'm sure with three children, one whom has special needs, it's hard to find affordable childcare.

    Anyway, I'm going to see if Mom and Dad will let me take him for the day, one a week or once every two weeks. He is such a sweet kid and I love being able to expose him to new things! He loves water and sandboxes. (My mom and I like to never got him out of the sandbox at the Children's Museum!) My sister-in-law just built a really nice sandbox for our 14 nieces and nephews. Plus, she has a pool so I think he'll enjoy those things. My brother is a life guard... so my sister-in-law said I could bribe him to lifeguard for all of the kids this summer in exchange for free pool access!! :)

    Mom is going to get off work early one afternoon and come observe and let us show her how to use the PECS system with "John!" I was SOOOOOO excited when she agreed to come in and begin trying to use the system at home!

    I'll keep you guys updated! I feel like things are taking a turn for the better and I know it helped having you guys' support and by you offering your advise and suggestions!!!

    Crystal
     
  37. ViolaSwamp

    ViolaSwamp Habitué

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    Feb 24, 2005

    Crystal,
    I want you to be careful. I know you care for this little guy but I'm concerned about you taking him out. I wouldn't consider doing any of this unless you working for the school district. You could set yourself up for a lawsuit. Not only if an injury happened, but today people throw around all kinds of accusations. At the very least I would be sure you are never, ever alone with him.

    Thanks for continuing to post his/the family's progress. It's really exciting to hear. I'm rejoicing with you!
     
  38. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Feb 25, 2005

    ViolaSwamp,

    Thanks... I appreciate the warning and concern. I've thought of that myself. The few times that I have taken him out, so far, I have always had someone with me... if not several people. I thought about the post after I submitted it yesterday and I talked to my husband. We both agreed that it would probably be wiser to just invite the whole family (Mom, Dad, "John," and his two brothers) over to the pool. That way we have covered ourselves... should something happen or be said.

    Everyone,

    Just wanted you all to know that Mom came in today and we "trained" her with the PECS system. She took the book home and we agreed to update each other on things that are happening with it... good or bad.

    So, I guess this will be my last post on this thread. If I have any updates, I'll post them but I think the original reason for this thread has begun to resolve itself!!

    Thanks to you all for your thoughts, advise, concerns and helpful wisdom,

    Crystal
     
  39. clarnet73

    clarnet73 Moderator

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    Feb 25, 2005

    Crystal, I'm so glad it's beginning to sort itself out... that's wonderful, and please keep us posted on his progress. :)
     
  40. sleeplessohio

    sleeplessohio Rookie

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    Feb 27, 2005

    Crystal
    The idea of special needs family in home parenting mentors is just starting to delevlop in our area. I am the 1st in our area & our local childrens services board is the one that started the program.

    They approuched me about the idea of the program last spring and it took until Oct to get all the legal stuff, funding & approvals worked out. I am currently working with 3 families.

    If your area does not offer something like this maybe your county children service board, local hospital or other agancy would be interested in developing & running the program.

    I have seen such improvments in the 1st 2 families I have been working with ( the 3rd I just picked up last week). It was easy to be told over & over that they are not the only familys dealing these issues but to be able to have someone come to your home an dset with you who has walked the road makes a big differance.

    I am so happy that you took the time to show Mom about picture schedules. It is a wonderful tool for so many disabilites. I am currently using it to help a sever ADHD child stay organized.

    Another idea is if you know of training being offered in your area that may help the parents pass the information along to them. Our states Coalition for the Education of Children with Disabilities offer tons of free speakers and training. I am currently working them to offer some of their training in our area for the families as well as educational staff, foster parents & caregivers.

    If the child is/can recieve MRDD services and the county MRDD offers family resourse money the family can use it to pay for training in things like how to set up and use a PECs programs.

    Becky
     
  41. LuvPreKTeachin

    LuvPreKTeachin Rookie

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    Mar 15, 2005

    Becky,

    I never thought about using PECS picture schdeule for helping ADHD children stay organzied! Thanks for the tip!

    Dana,

    Sorry, it took me so long to get back with you. "John's" EC teacher suggested 'Touch Math'. It's offered through 'Innovative Learning Concepts'. It's looks like something you could probably make. She said you could probably type in 'Innovative Learning Concepts' or 'Touch Math' keywords and find it. Good luck!

    Everyone,

    It's been a challenging week but we are surviving! (Seven more days until Spring Break! :) ) I'm going to post a question titled, "PECS Problem". I figured this thread was getting long enough! Hopefully, I can get some feedback from there.

    Crystal
     

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