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You are in such a tough situation.

 

If you believe that ASD would be the appropriate diagnosis, is there anywhere you have not tried yet that you could look for evaluations? Even if you have to drive a few hours or days! It sounds like having that diagnosis and the insurance benefits it would provide might be critical.

 

The only other thing I can think of is whether you have tried hiring an outside tutor on the chance she would respond to a non family member working with her.

 

You sound so discouraged and the current state of affairs really does sound unsustainable.

 

You mention that medication was recommended; maybe I missed this in an earlier post but--is she currently on medication? What medications have you tried in the past?

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Is there a university within commuting distance that has a graduate psychology program?  If so, they'll usually have a sliding scale clinic attached where students practice.  They may be able to run another eval and offer therapies for your daughter.  You're hurting, she's hurting... more than anything I hope you and your family can find some support.  This is so hard :(

Edited by shinyhappypeople
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Right now she's being the perfect studious angel for DH and working him like a pro to get him to give her the answers. She's doing a good job proving my point about how she's capable but unwilling to DH thinking she's showing him how it's all me.

 

Of course, his grand plan is to stick her on IXL and see how that goes. Told him fine, if that is how he wanted to educate than he could do it. Asked him what the plan was for when she decided the "certificate" wasn't a real reward and she started refusing. *sigh*

 

Stefanie

Maybe he needs to continue with this plan until he sees the true problems surface, which they will. Hugs to you.

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Forgive me if this has already been discussed, but have you tried medication?  My older son took Celexa for anxiety for about six months when he was 10.  He totally stopped having meltdowns and all of the behaviors that got him an Asperger's diagnosis went away.  Remarkably, when he went off the medication, the new behavior mostly continued.

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You said meds, so can you make those happen? 

 

Federal law requires the ps to *eval* but your state law decides if they have to write an IEP or provide services. You can check your laws to see. There's also the dispute process and independent evaluations. Around here, what happens is people eval through the ps, dispute, and then the ps pays for independent evaluations (3rd party, private) to decide the autism question. 

 

If she had more time to herself or were making her own plans, does she have any useful pursuits or interests? I've lost track of age, but odds are that she could do her math with your dh at night (which he seems willing to do) and then pursue everything else with sort of masterful play, pre-agreed pursuits. And it could be really off the wall, like she wants to learn to cook or code or read manga (do you read manga or draw it or??). Know what I'm saying? And sometimes kids are funny and don't consider certain things school that we think are.

 

So like maybe art and sewing and read aloud comic books and whatever are on the choice board for doing the day. Maybe you have some really basic routine demands, like get dressed every day, tidy your floor or bed every day, and beyond that, as long as she's pursuing the things you agreed on the night before, you walk.

 

There's a lot that doens't actually matter. There's a lot that could be done other ways. 

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Public school involvement is a non-starter. Not for education, evals, or services. Right now the school system doesn't even know she exists and DH wants it to stay that way. If I were to go around DH on it, it would be an irreparable breech of trust in my marriage. Whatever happens, for the time being, the public school system will not be part of the solution. Please stop referencing solutions that involve utilizing the public schools. Unless he comes around on it on his own they will not be useful.

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OP, I think your best bet is to read on what your gut tells you is going on with your child and try to find strategies that will work for your daughter. Sit and speak calmly with your husband, you both have her best interests at heart, share with him what you have been reading and formulate a plan together, giving you both time with her. Enlist any family members that are supportive and willing to help and form a team that is working with her. You all need to be very patient and it is not possible when you are the only one working with her. You are human, you will snap!

 

The issue you are running into here is that people on this board have had the support of the system, insurance, or financial ability to fund therapies, so that is what they have done. You need practical strategies that you and your husband can use yourselves. You most likely will not find them here. The library system is free. Take a short break from school or let your husband work with her for now and hit the books.

 

Hugs and best of luck to you!

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I'm reading your story with interest because we have a few kids with very difficult behaviors (outbursts, yelling, hitting furniture, hiding under furniture, putting head down and refusing to move, etc.) at the private school where I work. They are very challenging and emotionally exhausting, and I get to leave at the end of the day...and leave them to their parents. I love these kids, but there's no denying it's hard.

 

Does she act out when you give her non-school requests?

 

Also, if you do the "one-warning-then-consequence" thing, are you able to follow through? (I'm not saying that to be mean, I'm just wondering if consequences bother her or if she complies with a non-school request eventually.)

 

 

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OP, I'm hurting for both you and your dd. I have been in a similar situation in regard to dd's behaviors at least, and I know how hard it is. So, first, big hugs.

 

Second, take this for what it's worth as an internet stranger's advice, but it sounds like you do believe your dd has some genuine issues. I would give her the benefit of the doubt and act on the assumption that when she shuts down, it actually is because, right then, she cannot do that work.

 

She may, in a calm moment, understand the work.

 

She may, by exerting great effort, be able to do it for someone else.

 

But she trusts you as her safe person, and she is relaxing more around you and showing you all the good and bad feelings. You get to see her real limits.

 

I know getting professional help may be hard or impossible. What I learned through ABA was

 

*to give *very frequent* breaks, as someone mentioned above;

 

*to reward good behavior: seriously, give her a chocolate chip for each problem she completes. You might even start with something more dramatic. Plan on continuing this for weeks or months, but you can scale it back after she gets in the habit of working harder and longer. Give her lots of praise, too.

 

*to ignore bad behavior, insofar as possible. If she shuts down or starts whining or goofing off, ignore her, do something that keeps you calm, and start up again in a few minutes. The bag of chocolate chips in your hand helps with starting up again. The bad behavior might be there as a way to avoid hard stuff, or as a way to get your attention. Don't reward it with attention.

 

Of course that's basic, but that is the recipe that has changed life for us. It does take time and patience, but it's made a huge difference here. Best wishes.

Edited by Innisfree
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OP, I think I understand where the disconnect between your posts and the answers is coming from. I'm sorry if our responses have frustrated you.

 

Because your thread is titled "Giving Up," I think people assumed that you can't manage on your own any more and need more help. They responded with ideas for getting help.

 

But now it's clear that what you are saying is that you want to give up, but you can't, because there seems to be no way to get outside help. :grouphug:

 

In that case, I agree with most of the post below. You can do your best to find a name for what you are dealing with, based on the symptoms you see, then research through books or online or support groups (if you can find one) home therapies for that condition. You can learn some new techniques.

 

The part of the post that I disagree with is that you can't find help from the LC board. There are plenty of people here that have done at-home therapies with their children or who have learned skills and techniques from the therapists that their children have worked with.

 

The disheartening part is that just when you need a break, it seems you will have to do more instead. Dealing with things when you are burnt out is really hard. One of the necessary things is figuring out what you can do to relieve some of your stress. I know you said that taking a break was not the answer for changing things with your daughter. But taking a break for YOU to regroup might help.

 

:grouphug:  :grouphug: :grouphug:  

 

 

 

 

OP, I think your best bet is to read on what your gut tells you is going on with your child and try to find strategies that will work for your daughter. Sit and speak calmly with your husband, you both have her best interests at heart, share with him what you have been reading and formulate a plan together, giving you both time with her. Enlist any family members that are supportive and willing to help and form a team that is working with her. You all need to be very patient and it is not possible when you are the only one working with her. You are human, you will snap!

The issue you are running into here is that people on this board have had the support of the system, insurance, or financial ability to fund therapies, so that is what they have done. You need practical strategies that you and your husband can use yourselves. You most likely will not find them here. The library system is free. Take a short break from school or let your husband work with her for now and hit the books.

Hugs and best of luck to you!

 

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The part of the post that I disagree with is that you can't find help from the LC board.

Storygirl, not trying to sound irate, but that was not what I said or meant. I was trying to point out that in the op's specific situation, she may not find what she is looking for, here.

 

I do take advice on going behind the spouse's back very seriously, however, and the op handled that very well herself. I have expressed my opinion on that in the past on these boards, wasn't about to do it again LOL! Just passing through and I am gone again...

Edited by Guest
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Storygirl, not trying to sound irate, but that was not what I said or meant. I was trying to point out that in the op's specific situation, she may not find what she is looking for, here.

 

I do take advice on going behind the spouses back very seriously, however, and the op handled that very well herself. I have expressed my opinion on that in the past on these boards, wasn't about to do it again LOL! Just passing through and I am gone again...

 

I realize that. That is what I was disagreeing with. I think there is help to be found here, even for her situation.  :)

 

But that is for her to decide, of course.

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I realize that. That is what I was disagreeing with. I think there is help to be found here, even for her situation. :)

 

But that is for her to decide, of course.

I wholeheartedly hope so!

 

I was just adding another suggestion she may not have considered :)

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Public school involvement is a non-starter. Not for education, evals, or services. Right now the school system doesn't even know she exists and DH wants it to stay that way. If I were to go around DH on it, it would be an irreparable breech of trust in my marriage. Whatever happens, for the time being, the public school system will not be part of the solution. Please stop referencing solutions that involve utilizing the public schools. Unless he comes around on it on his own they will not be useful.

Sorry OP :) I wanted to make sure you were aware because sone people who don't do education will do services.
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Is there a university within commuting distance that has a graduate psychology program?  If so, they'll usually have a sliding scale clinic attached where students practice.  They may be able to run another eval and offer therapies for your daughter.  You're hurting, she's hurting... more than anything I hope you and your family can find some support.  This is so hard :(

 

There is, but I feel it'll be less than helpful.  1) I just fired a psych last week associated with the local uni psych program for being unwilling to look beyond DD's being a 28 week preemie.  One visit and a history screen and she already knew nothing else was going on but "preemie issues".   Sliding scales generally don't mean much since we usually have to pay full price anyway.  At that point I may as well go somewhere private because the wait times tend to be better.  A friend got her son diagnosed via the medical school at the local uni, so I may look more into that.  After that, I guess I'll have to take my chances as the place that blew off DD's OT eval because insurance wouldn't pay for anything.

 

You said meds, so can you make those happen? 

 

Federal law requires the ps to *eval* but your state law decides if they have to write an IEP or provide services. You can check your laws to see. There's also the dispute process and independent evaluations. Around here, what happens is people eval through the ps, dispute, and then the ps pays for independent evaluations (3rd party, private) to decide the autism question. 

 

If she had more time to herself or were making her own plans, does she have any useful pursuits or interests? I've lost track of age, but odds are that she could do her math with your dh at night (which he seems willing to do) and then pursue everything else with sort of masterful play, pre-agreed pursuits. And it could be really off the wall, like she wants to learn to cook or code or read manga (do you read manga or draw it or??). Know what I'm saying? And sometimes kids are funny and don't consider certain things school that we think are.

 

So like maybe art and sewing and read aloud comic books and whatever are on the choice board for doing the day. Maybe you have some really basic routine demands, like get dressed every day, tidy your floor or bed every day, and beyond that, as long as she's pursuing the things you agreed on the night before, you walk.

 

There's a lot that doens't actually matter. There's a lot that could be done other ways. 

 

 

She's on meds.  They don't work.  They take the edge off the fidgets but they do nothing for anything else.  One of them actually makes her ability to emotionally regulate worse and instead getting of 4 hours of "I can't do it" I will get "I'm having x, y, z side effect".  She doesn't have a lot of interest.  Part of the reason I'm sure autism is there is because she has maybe one true interest: Pokemon.  Everything comes back to Pokemon.  The vast majority of her tv watching is Pokemon, all her video games are Pokemon, her drawing/art interest is mostly Pokemon.  She will engage in pretend play but it was late developing and it is almost always the same game and unimaginative:  she pretends she's a cat or Pokemon and just crawls around the house screaming meow or some Pokemon noise.  She does reluctantly engage in play with other kids, but after the fact she complains to me that no one wanted to do what she wanted to do - - play Pokemon.  The only other thing she does is collect rocks but she doesn't have a true interest in them......she just wants to hoard them.  I have to be very careful with toys because more often then not she will just get emotionally worked up that they won't do things she thinks they should be able to do (usually the special effect things from commercials).  She has an ipad and at lest once a week she tries to have a conversation with Siri like she would with a person she's sitting next to and then gets frustrated about how the responses go.

 

OP, I think I understand where the disconnect between your posts and the answers is coming from. I'm sorry if our responses have frustrated you.

 

Because your thread is titled "Giving Up," I think people assumed that you can't manage on your own any more and need more help. They responded with ideas for getting help.

 

But now it's clear that what you are saying is that you want to give up, but you can't, because there seems to be no way to get outside help. :grouphug:

 

 

Yes.  I don't want to send my child to school.  I want to home school her, but if faced with the choice of being screamed at daily and ruining the relationship or school, well, then I just want to be mom.  But she can't go to a private school.  Not with the way things are right now.

 

 

I know getting professional help may be hard or impossible. What I learned through ABA was

 

*to give *very frequent* breaks, as someone mentioned above;

 

*to reward good behavior: seriously, give her a chocolate chip for each problem she completes. You might even start with something more dramatic. Plan on continuing this for weeks or months, but you can scale it back after she gets in the habit of working harder and longer. Give her lots of praise, too.

 

*to ignore bad behavior, insofar as possible. If she shuts down or starts whining or goofing off, ignore her, do something that keeps you calm, and start up again in a few minutes. The bag of chocolate chips in your hand helps with starting up again. The bad behavior might be there as a way to avoid hard stuff, or as a way to get your attention. Don't reward it with attention.

 

Of course that's basic, but that is the recipe that has changed life for us. It does take time and patience, but it's made a huge difference here. Best wishes.

 

Thank you for the suggestions.  

 

I'm reading your story with interest because we have a few kids with very difficult behaviors (outbursts, yelling, hitting furniture, hiding under furniture, putting head down and refusing to move, etc.) at the private school where I work. They are very challenging and emotionally exhausting, and I get to leave at the end of the day...and leave them to their parents. I love these kids, but there's no denying it's hard.

 

Does she act out when you give her non-school requests?

 

Also, if you do the "one-warning-then-consequence" thing, are you able to follow through? (I'm not saying that to be mean, I'm just wondering if consequences bother her or if she complies with a non-school request eventually.)

 

Depends.  If I ask her to do something small she will do it without too much resistance.  When it comes time to clean her room, go to sleep, or find her shoes; she usually starts screaming at me about how something is my fault, or I don't care about her, or that I spend more time with my grandson, etc.   

 

Consequences.....DD has never met a consequence that she feels should actually apply to her.   If I ask her to calm down, stop running, screaming etc in the house she feels she is free to ignore.   It's not until she is physically separated/stopped that she starts engaging.  The first step is to assure us why it is OK for her to ignore our request by telling us why it's OK for her not to obey us (and no, she isn't reasonable about it).  When you push back and continue to insist on her following the rules she usually proceeds to screaming one of the above excuses or throwing things.  She usually won't concede the point until you've thrown your own version of a complete two-year old style meltdown.

 

Stefanie

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Saying this gently, but I would go 100% screen-free until such time as she gets her schoolwork done in a reasonable time frame on a regular basis. No iPad, no TV, nothing. She needs to learn that there are consequences for her behavior.

 

If you need to put the entire family on a "screen time" hiatus for the near future in order to make it happen, so be it.

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We had to put my SN child on "screen time" hiatus last summer when she deliberately smashed the iPad screen in a temper tantrum. I would not have repaired the iPad at all except we needed it for her tele-therapy. But the Applied Behavioral Analysis case manager said that I was to only allow her to use it during the tele-therapy sessions and then lock it away immediately afterwards.

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Regarding an OT and retained reflexes. We are going through that now and didn't bother with trying to get a diagnosis and insurance. We see an MNRI type OT once a month for an hour, privately paid. The rest of the month, we do the exercises that she taught us at home. It's a commitment; we do the exercises 5x a week.

 

At each appt, she checks progress, and modifies, stops or starts new exercises. If we had insurance, sure we could have the OT do the exercises several times a week instead of me doing them. But we don't, and this way at least it gets done and is affordable. They were even willing to go six weeks between appointments. I am seeing improvements, and I do believe it makes a difference. I think you would see a big difference. I remember a few weeks after starting and having this marvelous day with my dc. I felt I had my kid back. It does go up and down with new exercises, but I'm enjoying the outcomes of this therapy.

 

I'm just writing this so you know that doing MNRI therapy for retained reflexes at home is a possibility. You don't need to have a diagnosis and insurance to get it done by an OT. It takes us about 15 minutes a day. Easier even than driving to an office to get it done. The office we go to every month is about 45 minutes away from us.

 

Best of luck to you.

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If her currency is Pokemon, use that. I'm not very familiar with it myself, but if it's at all reasonable, I'd stock up on Pokemon stuff to use as rewards.

 

At first, as you're overcoming ingrained resistance, low demands and high-drama rewards are your friends. There will be plenty of time to moderate things later.

 

She sounds very much like my dd with autism.

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Yup, and I'll add to that play Pokemon with her. Then you have something that motivates her. Your willingness to play with her, the time she gets with you, can become motivating and a powerful consequence. It gives you a positive way to start making small demands and have her want to comply. It's the whole way our ABA rolls. We play a ton and slowly insert small, reasonable, carefully ramped up demands. If he's having a hard time, we scale back the demands. But it's always couched with lots of play, lots of interaction.

 

You can also chain things, so start with her Pokemon and sorta chain interests. I don't know diddley about Pokemon, but if Pokemon goes places, that's geography. If Pokemon is an app then could we play this other app first and then your app. Like find little things about Pokemon to chain and lead her into other things she might not realize yet she'd find interesting.

Edited by OhElizabeth
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OhE's first paragraph is spot on. (The rest too, but that first part about playing with her, doing things she likes, really resonates with me.)

 

OP, this is how ABA works. You build the relationship first. You start with small demands and good rewards. Then, very gradually, you increase the demands while maintaining the relationship and the rewards. Eventually you can back off on rewards a bit while maintaining demands. It's a balancing act. At least, that's how it works for us.

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Just offering hugs this morning.  

 

We are in the process of documenting every incident for DD's doctor, looking for triggers.  I just realized how much time I spend putting out fires and dealing with extreme emotions.  I had no idea it was so often.  No wonder I feel exhausted and stressed!  

 

OP, It is okay to prioritize your own mental health sometimes.  Our kids are very needy, but our ability to help only decreases when we are frayed too thin.

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Just some more "theme" ideas.

 

These are generic for any "theme," yours is Pokémon.

 

There are two main types. One is "games." One is "cheats."

 

"Cheats" -- I have been SHOCKED to see it work; yet I have seen it work. I doubt it works for everybody, but I have been shocked.

 

This is decorate the page with the theme.

 

Call it Pokémon Math and decorate the page with stickers.

 

Or; laminate some color print-outs of Pokémon onto a paper and then hand-write some problems at the bottom of the page.

 

It can work!

 

Then games. You can make up games with a Pokémon theme, and as you play the game, you work a math problem here and there.

 

This can be time consuming, but it builds in breaks between problems so it is one of those things where if breaks between problems are needed it is at least a little more natural this way.

 

Or just adapt other "practicing math" games to have a Pokémon theme or a Pokémon gameboard. Depending how long a break you want to do you can adapt the game. It may be enough if she does a problem on her turn, then there is some gameplay, then you do a problem on your turn, then there is some gameplay.

 

You can make ways to add in little pieces of candy too -- this went a long way here.

 

But I agree with others -- you would need to start with fun games with no (or very little, easy) math. It has to be fun first.

 

But it can be a good investment towards playing games for math practice.

Edited by Lecka
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One other thing, and you may already do this but I would consider conceptually advancing her in math and just using cuisenaire rods or manipulatives to help if she's just not getting math facts. It may be that she's capable of higher level maths conceptually even if she can't do the actual calculation.

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One other thing, and you may already do this but I would consider conceptually advancing her in math and just using cuisenaire rods or manipulatives to help if she's just not getting math facts. It may be that she's capable of higher level maths conceptually even if she can't do the actual calculation.

I also know people who give a child a cheat sheet for basic facts--addition table, multiplication table. I agree that it can work to let a kid have a crutch for facts while they progress with concepts.

 

Arithmetic facts hardly count as math to my mind.

Edited by maize
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Just an update. DH feels enrolling DD in any school at this time is setting her up to fail because it's testing time. He will take on some of the teaching as work allows or as needed. The goal is to spend the summer working on attitude improvement and remediation and see where we are then. We've decided to school all 7 days of the week and drop daily hours down to two hours per day. We will no longer fight with her, if she doesn't do her school she loses all screen time until after the next school day. If she can manage to complete a full week without hours long meltdowns she can choose a Pokémon card pack.

 

We'll see if it works for more than a week.

 

Stefanie

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I follow this organization on my Twitter feed:

http://www.specialneedsroadmaps.ca/

 

They regularly publish tips on how to effectively teach kids who have ADHD and other issues. I've found their tip sheets to be very helpful. (I deal with ADHD, anxiety and ASD with my kids.)

 

ETA: Here's the Twitter handle-

@ONTSpecialNeeds 

 

 

Edited by MomatHWTK
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I think Alan Kazdin is really good on earning rewards (whatever you would call earning the Pokémon pack).

 

I am afraid waiting one week for a reward might be too long. You might be able to have some littler rewards much sooner and more frequently.

 

With Kazdin he also talks about having a shorter reward and a longer reward. So you could still have your longer reward, but add in a shorter one, too.

 

The thing is -- for a reward to work, you WANT her to earn the reward. That is the only way for her to see "awesome, I got the reward."

 

So when starting a new one, a lot of times we try to make the reward set-up be such that we KNOW it will be earned. It will be earned EASILY and then the child experiences that the reward system seems good.

 

Then you can adjust the reward amount down, you aren't committed to staying at the higher level.

 

Anyway I really recommend these books.

 

Bc if she can't go a week with no meltdown, then this system is just never going to get off the ground.

 

It is also easier to make the reward for a positive and not a negative.

 

For "work done" or "work done with specific actions that show a willingness to work."

 

Bc when you reward for things NOT done it is focusing on what you don't want to happen; but you will be mentioning the thing you don't want to happen a lot -- which can be counter productive.

 

Also it opens up to quibbling over whether if she whines or rolls her eyes or something, does that count as a meltdown, or does this count, or does that count, and it is just going to be better if you are set up to be able to *ignore* some of that.

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I think you're on the right track, but I agree with Lecka that you want her to earn frequent rewards right away.

 

We've spent a year and a half working on this with my dd with ABA. She's 12, and she has made enormous progress. But if I told her that her reward was a week away she'd still collapse in a heap of despondency.

 

You want her to experience success as immediately and frequently as possible. She probably feels an overwhelming sense of failure connected with all these hard "thinking" jobs. You want to absolutely guarantee that she experiences success, and gets rewarded for it, as soon as she starts trying to apply herself. That will help her keep trying.

 

What you're really rewarding is the effort she makes.

 

We do have small immediate rewards and also bigger longer-term rewards. Here, when dd is working at something that is hard for her, I hand out the small rewards after each problem or two. Once she starts to master a concept, we stretch out the distance between rewards to maybe one per page for her CLE math. For us, this is just what we need to do.

 

It's all a big adjustment in thinking, I know. This is not how I taught my older dd, but it is the reality of autism for us. I think you're doing really well taking stock of the situation and finding ways to adjust. Best wishes!

Edited by Innisfree
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On chaining pokemon into other interests... Pokemon was originally created by a guy who was studying insects. So you could study biology...insects and basic animal classification by piggy-backing off of Pokemon.

 

And I agree with doing themed worksheets with pokemon stickers or clipart or something. I did that with My Little Pony to motivate my preschooler to potty train. My boys (8 and 6) are obsessed with Pokemon and so I see what kind of hold it can have. I'm also young enough to have had friends into that in school. One friend drew pokemon and digimon endlessly and by high school started drawing her own cartoons. She got into the Art Institute of Atlanta with it!

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Pokemon cards are actually a Math game. You each get so many cards and put one down like in war. If she battles your Pokemon first, then she chooses the attack and you have to subtract the hit points from your health located on the top of the card. Then you choose your attack from your card and she subtracts it from her pokemon's health. You could do this for math and when it got easier, double them. The health and hit points on each card. Hit points are the points from the attack that get subtracted.

 

I have had kids that have strong intrests and I just go with it. Pokemon mononpoly game..math. Lots of Pokemon stuff that you could adapt to meet your educational goals. .Pokemon chaper books..not manga, but the scholastic older ones, Write Pokemon stories. Read to a stuffed plush pokemon. You could do active games..flying pokemon on swings.. bouncing pokemon about to evolve..pokemon leggos Ect..

 

I agree with having a behavior plan,and also wonder if moving and learning in a less traditional method would work. I would have tried a lot of this when I worked with kiddos with behavioral issues. I would only do an activity for 20 minutes, then do I would do some chores and she could play non screen stuff to let it soak in. Leave her wanting more. Come back and do something else. These are just ideas... of what I would start with. I would really focus on tying Pokemon and bouncing, swing walking, ect to school. They may not work at all. I am so sorry you are going through this!

 

Sorry, as I lost a post and was rewriting it, I see others had same ideas.

Edited by Silver Brook
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