I had hoped I'd never need to ask for pixies, but... - UPDATED 7/11 About This Page:

[TxDisMom]

So, my DD11 has been diagnosed on the autism spectrum. Her diagnosis changes almost yearly it would seem, going from PDD (pervasive developmental disorder) to borderline Asperger's to NLD (non-verbal learning disorder). She is a funny, incredibly smart child, and her problems lie in social situations and in dealing with every day life, especially things like hygiene. (sigh). She doesn't like to take part in a lot of things, and when we're all home, she prefers to stay in her room alone with her tv and her video games.

She was very excited, though, to hear that we are going to Disney in December but here is where the pixies come in. She has been ridiculously surly and uncooperative since the summer break began, is not taking care of her room or her stuff, has hit out at her sister (literally), has been rude and argumentative and completely disrespectful, and as of the night before last, got my DH so angry over her behavior that he is now threatening to not let her go on our trip, meaning BOTH of them would stay home. I thought at first that he was just using that to try to motivate her, but after speaking to him privately, that's not the case. He is completely serious and told her that as of last night, they weren't going and that she would have to work hard to get that changed.

So, here is my plea for pixies! This was supposed to be the ultimate family trip and a dream-come-true for all of us; it would break my heart for them to not be there with us, but I WOULD still go because it would not be fair to my other DD to cancel at this point. She is my planning partner and has been involved in every aspect of this trip so far! I've basically been planning this trip since 2003!

So please send some happy pixies to Jordan so that she can turn her behavior around and still get to come on our trip! I know she is capable of better behavior; she certainly doesn't act out at school and even at home we have seen a much sweeter, wonderful little girl. We are used to Jordan being Jordan and usually can work past the rough spots but this is the worst it's been in forever.

Thank you

[jimmymac]

[lukeandbrookesmom]

Sounds like her behavior is a combination of her autism and being a pre-teen. Can you involve her a little more in the planning? Maybe she's feeling a bit left out if your other DD has been your planning partner? Also, with autism, it is extremely important to keep her from retreating into her room alone too much so maybe pulling her into the planning will help that, too. She needs to know that there are consequences for her unacceptable behaviors but I would try going the positive reinforcer/ABA model for a bit to see if that helps at all.

[TxDisMom]

Originally Posted by lukeandbrookesmom

Sounds like her behavior is a combination of her autism and being a pre-teen. Can you involve her a little more in the planning? Maybe she's feeling a bit left out if your other DD has been your planning partner? Also, with autism, it is extremely important to keep her from retreating into her room alone too much so maybe pulling her into the planning will help that, too. She needs to know that there are consequences for her unacceptable behaviors but I would try going the positive reinforcer/ABA model for a bit to see if that helps at all.

Oh, believe me, I have tried EVERYTHING to get her involved! I bought her her own book and a notebook so that she could make notes about what she wanted to do (although I'm not surprised that she didn't want to use it; her motor skills were VERY slow to develop and writing is not something she likes to do. She has partial tremors as well...), I've tried to talk to her about our dining plans and touring plans and she just doesn't want to take part in that aspect of it. And we 'make' her take part in some family time every night, and she does it, but more often than not grumbles through it. I tried to sit her down yesterday and calmly explain what she needed to do to change things around and she just turned her head and made her "I'm not listening" face and I'm just so worried!

Things had been going so well at school too. Jordan was assessed as being ready to be in a regular classroom full time (with extra math resource help) for next year and it seemed as though we might have turned a corner, at least at school. At home, it's as bad as it's ever been

[lukeandbrookesmom]

Do you think maybe more structure would help - like she has at school? Just trying to like of things that may have changed with school out that are triggering this behavior.

[TxDisMom]

Originally Posted by lukeandbrookesmom

Do you think maybe more structure would help - like she has at school? Just trying to like of things that may have changed with school out that are triggering this behavior.

Oh, I know it would make a difference. At least we have swimming lessons starting soon so she'll be getting out of the house more and she loves the pool. Unfortunately they've been booked until now, and she won't try a day camp; we tried and she had such a meltdown. Part of the problem, and it's not like we're not used to it, is that it is SO hot during the summer here that if you're not going to the pool, you don't want to go out at all! We do get to the movies when there's a kids' movie out, and we have season tickets for our local MLS team and we don't miss a game, so there are SOME things going on, but I would be thrilled for her to go to camp or something. And she couldn't qualify for summer school, so that was out too.

[Luvsun]

[CelticChick]

[shydonna1]

[chelle89]

[Tonichelle]

I agree with whomever said it sounds like it's autism mixed with being a preteen...

[buzzspal2]

[Colexis Mom]

[Teresa]

I think that a lot of structure sounds like a wonderful idea. I don't have experience with autism, but from what I've read and learned from parents who deal with it, structure is all important. Most of the kids I know with autism are in year-round school, or their parents make sure they have something to do everyday, that it the same as yesterday and tomorrow.

Do you have a chore/behaviour chart? I've used those with my DDs before. I know where your DH is at - we threatened that with DH's son once, and then didn't back it up. The threat not to take the child is made in anger and frustration and then there is no way to back down well.

As for planning with you - maybe it seems too overwhelming to her, and too much info at once?? Maybe you could sit down and go through just the attractions in FantasyLand. Ask her to circle the ones she's interested in. Then, the next day ask about TomorrowLand. Then AdventureLand, etc. This way she will have an overview, and not be inundated with info.

IF there is a library around you, maybe they have the movie "Beach Party at Disney World" (I think that's the name) It gives a good overview of the place (18 yrs. ago, but the main stuff is still there), and has nice catchy tunes on it. My kids have all loved it, partly becuase they can watch the kids on the video have fun in WDW!!

Either way, Pixies for all of you. The success of your DD to control herself means so much to all of you! Good luck to you.

[graygables]

As the mom of a 12yo Aspie girl, here's my take. I would never punish my child by not allowing her to go on a family vacation due to behavior that she has very little control over. Same goes for my bipolar DD. To me, being excluded from a family event is not a natural consequence for the behavior that they will learn from and be able to understand. With all of my children, I learned early on to NEVER make a threat I would not carry out. I think that's a very important thing to remember, especially when dealing with children who can make us angrier quicker (combined "normal" with special needs behaviors).

I was told that puberty+ASD=very rough waters. It's hard enough for girls with normal social skills, imagine what it must be like for someone with no understanding of social language. It's like living in a world where suddenly, everyone else is speaking a different language and you don't understand what they are saying. The changes and upheaval can be overwhelming.

If she doesn't want to take part in the planning, I certainly wouldn't make her, but she does need to understand that if you don't know what her expectations and desires are, you can't include those in your plan. My 12yo was being "attitudinal" before our last trip and I made it clear that without input, you do what everyone else has planned. She hopped to it. She doesn't mind making lists, but 9yo is an artist and much prefers drawing. Maybe you can give your DD some park maps and have her highlight things she's interested in doing while she's alone in her room.

Also, she may be afraid of going. It's an overwhelming place and she also may be resentful or jealous of her sister who never seems to have the same kinds of struggles that she does, so she knows that it will be easier for her sister. She may be anticipating her sister marching right up to the princesses while her stomach is tied in knots and she's paralyzed.

on the way...I know it isn't easy.