Thank goodness you guys exist

Discussion in 'General Parenting' started by Ivy, Aug 26, 2010.

  1. Ivy

    Ivy Guest

    I just found this forum and, I kid you not, I wept. I think I really need this place.

    My son turned 5 in February. He was diagnosed with autism at TEACCH last July. He's extremely bright in a lot of ways, and honestly his behavior is not that bad most of the time. But he really resists being managed-- that boy just will not be told what to do. We've built up a set of ways to circumvent that and avoid locking horns with him, but we're aware that it will probably always be a challenge for his teachers. With his diagnosis we were able to get him placed in a Title 1 pre-K last year which was an absolute Godsend. He made some really, really great strides last year. His teachers loved him and although he was still acting out some by the end of the year, he had made a lot of progress.

    For Kindergarten, we have chosen a charter school with excellent Easy Child staff who will visit him every day in the regular classroom. He started today. When I picked him up, his teacher recited a litany of everything he had done today- threw his shoes, meowed, couldn't sit still, just basically refused to cooperate.

    I knew it wouldn't be a cakewalk. His pre-K teacher was upfront with me about the challenges he would have in the classroom. And at the Kindergarten IEP meeting we noticed that the K teacher is a little rigid. (There's only one class per grade.) But I feel like her expectations are a mite unrealistic. Clearly he should not be throwing his shoes, so it's lace-up shoes from now on (he loves his Crocs). But some of the other stuff seems like just your basic everyday autistic stimming, doesn't it? I don't want him to be punished for being autistic.

    I really feel like I'm in over my head, trying to navigate sending an autistic child through school. Homeschooling isn't an option for us for a variety of reasons (I'm being treated for depression and I worry that if I homeschooled I'd become even more overwhelmed and that wouldn't be good for him either). It's just the first day so I KNOW I'm overreacting but I can't shake this sad feeling. I just wish it were easier.

    Thank you for reading this far, if you did. I know I'm a disorganized mess and I probably didn't explain things very well. If I had to crystallize all this into a single question, it would probably be: How do you guys stay upbeat and take it a day at a time instead of looking down the road and imagining all the negative outcomes that COULD happen?

  2. runawaybunny

    runawaybunny Guest

    Welcome Ivy.

    Glad that you found us, sorry you had to.

    I'm sure that some other members of the community will come by soon to respond to your post.

    Hang in there.
  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Welcome Ivy!
    So glad you found us. I know how you feel about finding this place; it's been an absolute life-saver for me. I found this place when my difficult child was 6 and it was the middle of the night and he was keeping me awake way into the wee hours. I can't explain the relief I felt when I found this place.

    I'm sorry kindergarten is off to a rough start. When the teacher mentioned everything to you did she seem upset or more like she was sharing information? I ask because we often here how difficult child's day went (and it usually isn't great) but it is more to keep us informed than anything else. If she was upset and she continues to be that way you will probably need to speak with her about it-he should have some accommodations built into his IEP to help him. Do they have extra staff in the room all of the time or part of the time?

    How do I stay upbeat? I try to look at each day as a fresh start for my difficult child. I come here and get other perspectives and plan for the future as best as possible but don't dwell on it (most of the time).

    Again, welcome, glad you found us!
  4. Ivy

    Ivy Guest

    Thanks to you both for responding. I feel better already just having been heard.

    WipedOut (BOY do I get your username!)- today was day 2 and the more I get to know her, the more I think his teacher is mostly just information sharing. Today was MUCH better. Actually behavior-wise it was kind of worse; he left the cafeteria during lunch, and got a letter sent home about that. But his teacher, though she gave me another earful of everything he did wrong today, also gave me a lot of indications that she is trying to learn how to respond to him. She said she's going to adjust her discipline system to accommodate him and not punish things like verbal tics that are just involuntary autistic behaviors. And she's consulting the Easy Child staff (someone is in the classroom with him for 30 minutes to an hour a day, but the rest of the time he's without extra help beyond what the teacher and assistant can provide) about ways to teach him visually rather than expecting him to do a lot of listening, which fatigues him. He ALWAYS acts up during "circle time" and does well the rest of the day, she says. Once I really thought about that, it was obvious to me- circle time is when they're being "taught at" and it's probably 90% verbal.

    I also gave permission for her to use parent volunteers when they are available to help keep him on task. The funding is not there for him to have a para-pro at all times (and I'm not convinced he actually needs one- things run smoothly at home most of the time, he just needs time to get used to the new school and classroom).

    So I feel a lot more settled today but I am dismayed that all it took was one bad day for me to go down the rabbit hole and start thinking "what if he gets kicked out? what if he just can't fit in? what if he never cooperates in school again?" and that didn't take me anywhere good. I just gotta get a grip. I will practice taking each day as a new opportunity to respond better to his needs. Thank you again, so much.
  5. JJJ

    JJJ Active Member

    Hi Ivy and welcome!

    The school cannot say that 'we don't have the funding'. If you feel that untrained parent volunteers are enough to help your son, then that is wonderful. But if that doesn't work and it becomes clear that he needs more 1:1 help, call for an IEP meeting and if the IEP team determines that he needs an aide, he gets one -- you do not need to worry about the funding, they must-by law-figure it out.

    (Course, that assumes you are in the USA.)

    My son Tigger is Autistic and those days sound like his Kindergarten does get better.
  6. SRL

    SRL Active Member

    Hi Ivy, welcome to our forum. Sorry I didn't reply sooner--my computer has been down for three weeks so I've not been around as much as usual.

    I know there's a tendency for us to want our kids to try it on their own if they can, but I'm also of the mindset that a rotation of untrained parent volunteers probably isn't an ideal support for a child with Autism in kindergarten. The classroom is a way different world than being at home with parents or other caregivers translating the world to him and making accomdations as part of a lifestyl. Starting off with supports until he makes the transition, and then backing off from what isn't needed might make it easier on everyone, including your kiddo, his classmates, and the teacher.

    If he's attending a publicly funded charter school and the need for an aide is there, they have to find the money. That part isn't your problem.
  7. tictoc

    tictoc New Member

    I hope this week is better. An aide can be really wonderful. And, the school can't use lack of funding as an excuse for not providing one (if it is a public charter school). If your child needs an aide, the school has to provide one.
  8. busywend

    busywend Well-Known Member Staff Member

    Welcome Ivy! I have been where you are so I can give you this advice. I am allowed - LOL!

    You are wound up too tight worrying about what might happen. The best thing to do is be prepared for every scenario, but not worry about when/if they are coming. It sounds like you know your difficult child pretty well - which goes a long way to being able to be prepared. It can be quite the roller coaster ride, especially when you get a few good days and you let your guard down. Then a bad day which is not even really that bad can send you spiraling downward.
    So, get to your middle ground where you have your plans for eventualities and then relax and enjoy your difficult child when you can.
  9. Ivy

    Ivy Guest

    You know, reading this was like having a huge weight lifted off my back. I feel like I'm going to get an ulcer if I keep this up, but what you said is so true- I worry because I'm afraid if I stop worrying and relax between bad days, then the next bad day will feel like a punch in the guts. I hate conflict so much and I'm not looking forward to having to get adversarial with teachers/school officials. I hope it's never necessary.

    Thanks to all who have replied. This week has been better and the teacher has been much more accommodating and less confrontational. I guess she felt bad about having met me at pickup after the VERY FIRST DAY of Kindergarten with a laundry list of everything he had done wrong that "nobody told her" would happen. Or, maybe she knew she had messed up by being confrontational about an autistic student's fairly normal autism behaviors and wanted to clean up her act, which I wholly support.

    I didn't realize that funding was not a consideration for services in an IEP, but it makes sense that it shouldn't be otherwise they could just say "We don't have the funding for that" no matter what it was. I was trying to figure out a non-confrontational way to call another IEP meeting since the things we discussed in May seem to need readdressing. Imagine my relief today when his teacher asked if I wanted to have another IEP team meeting in September, since his Easy Child teacher was not present for the first one.

    In short: WHEW. Calgon take me away!
  10. Marguerite

    Marguerite Active Member

    You're here with us now, we can support you because a lot of us have been where you are now and can share our experiences.

    Something that worked well for us in our family with the same sort of problem - a Communication Book. It's easy and it reduces that sense of confrontation and nagging, on both sides (you and the teacher). But you DO need to keep sharing information with one another.

    You get a cheap exercise book (lined pages are best) and reinforce the cover a bit. I printed out a cover off the computer (single sheet of paper, not a brilliant fit but it identified the book) and labelled it "Communication Book - difficult child 3" with these lines underneath - "friends, family, teachers, please write down anything he does or any issues that you want to share with everybody else, so we can all work as a team to help each other with this child."
    I then covered the whole thing with a plastic exercise book cover to protect it. You could do it differently - it's up to you. Don't make it stand out too much (I would avoid sequins and feathers, for example) but a cover that can be moderately easily found is good. I have a rainbow crayon which I swept over a yellow sheet of paper I'd went through the printer.

    Next - you write in the book anything you think is relevant. The sort of stuff you would tell the teacher if you were standing on the classroom steps. For example, I might write, "He had a difficult day yesterday, a lot of family visited and his young cousin was being a pest. difficult child 3 tried to be patient but found the crowd and the pressure too much and retreated to his room. We noticed he was stimming a lot last night, he might be more obsessive today as a result. He stims more when he is stressed, so if you see his stimming increase, please don't pressure him. He does respond well to a suggested change especially if you ket him hold his towel. He finds towelling calms him down. He won't be able to sit still, but if you give him his towel to sit on, it could define his space better for him."

    This can be useful information for a teacher on the spot. The teacher could then write in reply, "Thanks for the suggestion. He wasn't too bad early on, but later as he got tired, I saw him go off on his own and flap his hands a lot more. Then he stopped flapping and was staring up at the trees, he didn't want to come inside. So I got his towel and handed it to him, suggested he come inside and sit on the towel during story time. He sat for a few moments then got up to wander to the back of the room. I sent the aide to shadow him, then after story time she brought him in to the room for nap time. I let him cover his pillow with the towel and although he didn't sleep, he seemed happy to lie there quietly."

    In all these exchanges, you both get valuable information. When you look back over this (after months or more) you can see patterns. Over the years with difficult child 3, we had some good teachers, and some very rigid strict teachers. When we had teachers try to "wean off" from the Communication Books, we had a major increase in discipline issues. The Book really made a huge difference to us.

    I used to type up my entries on the computer (I'm faster, plus it's more legible) then stickytape it into the book right before school each morning. Sometimes I would start writing an entry immediately after school (especially if there had been problems that day that really upset me) but I always tried to keep the Book as a 'safe' area for anyone commenting. If the teacher needed to vent "He was HORRIBLE today! I don't know how you stand it at home!" then I let it happen. After all, I could sympathise! But if those sort of entries were happening too much, I knew that the teacher needed help and organised a Learning Team Meeting to discuss the problems and try to find a solution.

    The teacher needs to know you're all on the same team. I've managed to do that even where I think the teacher is a bully and an idiot. It was a lot harder, especially when the bully/idiot is also paranoid and is looking for the slightest hint that I might be going behind his/her back, but it can be done. All problems between you and the teacher needs to be resolved as far as possible, as soon as possible. And never vent about the teacher in the presence of the child (or the teacher). A child with autism is a human tape recorder, they can regurgitate large chunks of text from whatever they have heard. ALWAYS be careful and guard your tongue!

    We learned this the hard way...

    A child with autism can also be a joy and delight, rewarding to raise. A lot of hard work, but progress can be surprising and amazing.

  11. Ivy

    Ivy Guest

    Thought I'd update a bit, a couple of weeks into the school year.

    Things are going MUCH better. The Easy Child teacher has set the K teacher straight regarding which of my difficult child's (love that term!) behaviors are actionable, and which are typical autism behaviors that are better off not being punished. I am SO GLAD the Easy Child teacher exists and is very familiar with autism. One day last week, the K teacher asked me to send in an old sock so she could fill it with rice & lavender for difficult child to hold and manipulate while they're having circle time. That's a far cry from punishing him for meowing! I know he does things that need to be managed, and that he can be difficult to manage at times. (husband calls him the immovable object- it is difficult coming up with irresistible forces to get him to behave!) But not EVERYTHING he does needs to be managed, and it'll be easier to manage the ones that DO, if she knows which ones she should just ignore.

    I am trying to understand that it's a big adjustment for her too- she says difficult child is her first autistic student. Now, I happen to know that he is not- this is a small school and I know of a child in a higher grade who is autistic as well, and who was in her K class. BUT, that child was not yet diagnosed at the time. So my difficult child is the first identified autistic student she has had. I'm glad we have the benefit of a diagnosis and an IEP since I don't think she would be as flexible if we did not have that.

    Marguerite, thank you for the suggestion- I've started keeping a small pad in his folder that I write any notes in for the teacher, and I've let her know she can write in it as well. She has not written in it yet but the precedent for communication is set.

    Time for a signature I suppose! :) Thanks to all.. I will keep updating.
  12. SRL

    SRL Active Member

    Good to hear that things are looking better, Ivy. Having a flexible teacher who is willing to learn makes all the difference in the world.