Need advice on how to handle my daughter

SeekerofLight · Mar 16, 2012, 01:24 PM

My daughter's story is a long one. For the first 10 years of her life I raised her as a single parent. She was always challenging to raise. When she entered school, the school social worker took notice of her. She recommended a therapist and we went. Over the years she saw many, many doctors, had more tests than you can imagine, tried different medications, and received many different diagnoses. She was once hospitalized for 10 days at age 9, coming out with a diagnosis of ADHD, PDD and BiPolar. Nothing really seemed to help.

When she was 10 she went to live with her father. He took her off all of her psych meds and put on Concerta. I've seen her a few times over the years, and with each visit I meet a different child. Her last visit was the most disturbing.

She was here for a little over a week. All she did all day and night was watch Japanese anime. I could not engage her at all. It was horrible! I cried the whole time.

She recently was diagnosed with Asperger's, which if I am correct is the same thing as PDD. She's now 15 and will be here for the summer.

Does anyone know what I should expect from her when she comes? I feel like I don't know her anymore. I do talk to her almost nightly, but she seems very immature to me. She's a sophomore in high school and has very few friends (7th graders) and has no interest in boys. She's not involved in any extra-curricular activities either. I know she plays video games a lot, but I want to be able to engage her this summer.

I'd appreciate any advice, personal stories, or words of wisdom on what to expect.

Thanks!

Miss Laura · Mar 16, 2012, 04:19 PM

Hey there SeekerofLight,

I can only give you information that I know. I use to support 2 men in a housing scheme. Both have Asperger's. Both very intelligent but very naive. The elder of the 2 also had Bipolar and he was hard at times to help as his Bipolar and Asperger's would hit off of each other.

I would say try and learn about something that she likes..... ask her Dad if she is unsure. Social situations are hard for her I would persume. Making friends will be hard for her. Is her school not helping her with this?

Does she not see a psych, t etc?

Example.... 1 guy I supported didn't get the point in going to the pub and having a drink. He would stare at you or at the customers which could lead to him being hit by the person being stared at. We worked on glancing and not staring. Explaining why staring is not a good idea. Then we would to make sure he understood ask him when we were out and about why staring is not always a good idea. His Psychiatrist helped too as she would explain about staring and glances and the differences etc.

I know its different with girls and with a teenager at that..... I only have info on adults i'm afraid.

yellowted · 06:20 PM

asperger's rely on routines to make sense of things, they do not like change in routine. insignificant changes to you will turn her whole world upside down even down to the clip she usually wears on thursdays being used on a tuesday is enough to unsettle her whole perspective of everything. find out what her favourite foods/activities are and what her routine is at her fathers from the getting up /dressed routine to what she does on each of the different days of the week, try to keep the foods and routines as near as possible the same. this will give her some sense of security/normality. where her routine is giong to be different, you need to prepare her by introducing the ideas now when you talk to her, start with planting the idea that when she comes to stay with you she will not be going to school, then next time reaffirm this, the next time reaffirm again and ask her to think about what she wants to do instead of going to school, keep broaching this every time you talk to her, planting seeds towards the things you want to do with her, when she has accepted the no school and doing different things you can discuss in detail an outing or visit or visitor you plan to do/meet with her.keep reaffirmig. by doing all this pre planning she will be more accepting of the change when the time comes.
when the time comes for each change you can prepare her by saying do you remember when we talked on the phone i said when you come to visit ........would happen well that is what is going to happen today, re explain the details of things like the journey you will take, the person you will meet or the foods you are going to buy etc before you set off so she knows what to expect.
she may have watched so much aname because this was something she associated with what she did at home - part of her home routine,something she has worked out how to react to. everything else was alien to her so she did not have the mechanisms in place to know what to do or how to behave. you need to explain everything to her from what you want her to do to what you are going to do. do not force her, but do put strong boundries in place. full time aname is not good for either of you, so in your calls set some seeds to the daily routine to include aname time only after supper for example. gradually over time she will start to interact.
another good thing is to make a time line this can be pictorial or written depending on her ability
draw a line along a piece of paper, start at the left side, put the time you want her to get up under the line and above it write/draw a picture to say get up then put the next time as 10 minutes later and either bath, get dressed or breakfast in the kitchen, you may need to be more specific and put what she is going to have for breakfast do this for every event during the day till go to sleep. keep it in sight of a clock so you can refer to the time and what is supposed to be happening at each time this is her 'routine for the day' as one event passes, cross it out together or put a big tick through it and explain that the time has passed for that activity and explain the next thing on the time line so it is clear her day has moved on to the next thing along the line and to reaffirm to her what to expect for the next however long..every evening sit together and make one for the next day explaining it as you go so there are no supprises for her the following day. as she gets used to referring to it she will be less likely to be stressed out and more relaxed and open to interact /communicate with you.
do not try to pack her days with stuff, plan in times for her to relax and do what she wants, drawing, tv, computer games etc. asperger's use a lot of energy just making sense of the world/routines, other people etc so often get overwhelmed by unprocessed stuff they have not made sense of yet or tired from all that processing. time out to relax/be themselves gives them time to process the unprocessed stuff that they have lingering from earlier and regain some energy for later activities.
good luck

yellowted · Mar 16, 2012, 06:24 PM

Quote:

Originally Posted by yellowted

asperger's rely on routines to make sense of things, they do not like change in routine. insignificant changes to you will turn her whole world upside down even down to the clip she usually wears on thursdays being used on a tuesday is enough to unsettle her whole perspective of everything. asperger's are often very high functioning in certain things. find out what her favourite foods/activities are and what her routine is at her fathers from the getting up /dressed routine to what she does on each of the different days of the week, try to keep the foods and routines as near as possible the same. this will give her some sense of security/normality. where her routine is giong to be different, you need to prepare her by introducing the ideas now when you talk to her, start with planting the idea that when she comes to stay with you she will not be going to school, then next time reaffirm this, the next time reaffirm again and ask her to think about what she wants to do instead of going to school, keep broaching this every time you talk to her, planting seeds towards the things you want to do with her, when she has accepted the no school and doing different things you can discuss in detail an outing or visit or visitor you plan to do/meet with her.keep reaffirmig. by doing all this pre planning she will be more accepting of the change when the time comes.
when the time comes for each change you can prepare her by saying do you remember when we talked on the phone i said when you come to visit ........would happen well that is what is going to happen today, re explain the details of things like the journey you will take, the person you will meet or the foods you are going to buy etc before you set off so she knows what to expect.
she may have watched so much aname because this was something she associated with what she did at home - part of her home routine,something she has worked out how to react to. everything else was alien to her so she did not have the mechanisms in place to know what to do or how to behave. you need to explain everything to her from what you want her to do to what you are going to do. do not force her, but do put strong boundries in place. full time aname is not good for either of you, so in your calls set some seeds to the daily routine to include aname time only after supper for example. gradually over time she will start to interact.
another good thing is to make a time line this can be pictorial or written depending on her ability
draw a line along a piece of paper, start at the left side, put the time you want her to get up under the line and above it write/draw a picture to say get up then put the next time as 10 minutes later and either bath, get dressed or breakfast in the kitchen, you may need to be more specific and put what she is going to have for breakfast do this for every event during the day till go to sleep. keep it in sight of a clock so you can refer to the time and what is supposed to be happening at each time this is her 'routine for the day' as one event passes, cross it out together or put a big tick through it and explain that the time has passed for that activity and explain the next thing on the time line so it is clear her day has moved on to the next thing along the line and to reaffirm to her what to expect for the next however long..every evening sit together and make one for the next day explaining it as you go so there are no supprises for her the following day. as she gets used to referring to it she will be less likely to be stressed out and more relaxed and open to interact /communicate with you.
do not try to pack her days with stuff, plan in times for her to relax and do what she wants, drawing, tv, computer games etc. asperger's use a lot of energy just making sense of the world/routines, other people etc so often get overwhelmed by unprocessed stuff they have not made sense of yet or tired from all that processing. time out to relax/be themselves gives them time to process the unprocessed stuff that they have lingering from earlier and regain some energy for later activities.
good luck

hope things go well and are not too stressful for you x

SeekerofLight · Mar 17, 2012, 11:09 AM

Thank you so much for all of the suggestions. I have always planned out our days and given her plenty of time to get used to the idea that something was going to happen. That part came naturally to me as I learned early on that she does not transition well.

We've already begun talking about what we will do when she comes. I usually give her a few options and let her decide.

Now if I can just keep her off the computer or tv until after dinner, that would be great!

And no, she's not in therapy or getting any type of treatment at her father's. She's basically Cinderella there. She has two young half sisters, one of whom is severely Autistic, and she basically watches them all day. It's really quite sad.

Mar 17, 2012, 11:32 AM

My best friend's daughter has aspergers ... She most enjoys activities that can be done together ... Beading, drawing, coloring ... building a bird house or butterfly house together (painting it then hanging it up for observation ...), building, filling, watching a birdfeeder ... Kits can be purchased at Target or local Hobby Store ...

She's rather uncomfortable in social situations (especially large active loud noisy crowds and such) ... So walks in a garden or park or sitting in a swing and talking ... smaller gatherings work best ...

And while most of us find an innocent hug or touch non-threatening, a child with aspbergers or autism can totally become unglued by that ... So unless my best friend's daughter asks I never go there ... Which is kinda hard I know, especially when they do something so sweet you just want to hug 'em or toussle their hair or give them a playful nudge or touch on the arm or sleeve ...

Come to think of it, I think I learned more about respecting boundaries from this one child than by all those years of therapy I had ... Not only for others, but for myself as well ... !!!

You've got the whole summer ... I'd start out the first week by creating something together that y'all can enjoy tending to the whole summer ... Be it a bird house or feeder or a simple patch with a tomato bush or two ... A simple pond with a couple of Koi ...

Oh, My! ... The possibilities ... And, I think you might find as y'all enjoy the activity together that your own bonds will probably heal and become a little closer too ... Also, I think you'll find her need to be on computer or in front of TV all the time will probably kinda rectify itself too ... !!!

Sincerely,
BrokenCloud

SeekerofLight · Mar 17, 2012, 06:01 PM

Thanks for the ideas, BrokenCloud. I just remembered that when she was last here I tried to come her hair and she got upset. She did flinch whenever I touched her. She never used to be like that with me, just other people. I'll keep this in mind when she comes, and no Six Flags this time either!

-jimi- · Mar 21, 2012, 09:12 AM

I hope I can remind you a little about how lucky you are. I was and still am naive and childish. When I was a teen, my mom went nuts on me because I wouldn't do what the other kids did. Heck, didn't she know what they did? Why would she want me to be like that? They did a lot of drinking, unsafe things, hooking up... from maybe age 14. I was home safe. And my mom hated that.

Back then there were no computers for home use that were affordable, so I spent my time reading a lot, both fiction and nonfiction. I had a few other interests like art, pen pals in other countries and playing the guitar. Most my activities were solitary (even though I always had a few friends).

Let her grow up at her own pace. Don't try to rush her into the adult world.

Is she also ADD, and is she still on Concerta? Sometimes a mix of ADD and Asperger's can do weird things. ADD can soften the AS, since you will not have the same ability to focus on your interests. If then you are put on a mind enhancing drug, you could focus on your stuff more. With ADD that is a good thing, but throw in AS and you will of course want to hyperfocus on your interest, not on things you find boring.

Have you asked her what she wants to do for the summer? Maybe she has a few ideas on her own. If you set up some kind of daily schedule, make sure it includes you as well. If she is not allowed to cheat off the schedule, you're not either. If a movie you always wanted to watch comes on on TV and it's not TV night, you just need to suck it up.

I would suggest a schedule where she has quite a bit of time doing her own thing. When you do what you like, time flies and staying on the computer just for 30 minutes is sort of a dream, make it more realistic. Maybe her own time needs to be four times as long as your together time.

There are lots of things you can do together and still separate. Where you both stay busy in the activity but you still spend time together. Some have been suggested. Now I'm just talking ME here, but at that age I probably had appreciated things like drawing and painting together, hike in the woods, go to a petting zoo, play board games, bake bread, go to the library and had it been possible back then, videogaming together.

Touching can be iffy. You can get desensitized to touch so it feels more OK, also if it is done regularly by someone you can maybe learn to tolerate it from that person. Ask if you can hug her. Maybe you can, maybe not. Hugs are the worst for me. Neck rub or back massage is fine though for me.

And don't forget to tell her you appreciate her.

SeekerofLight · Mar 22, 2012, 07:21 AM

Thank you so much for telling me how you feel. My daughter is not very good at expressing herself, never has been. I'll ask her about the hugs. When I talked with her the other night I apologized for trying to comb her hair. She told me that it's true, she didn't like it. We tried to think of things we can do while she's here, like going out for sushi (her favorite activity) going to the beach, probably in the evening when there's less people there, hiking is a great idea, and I'll see if she's willing to play games with me.

I really appreciate all the input!

-jimi- · Mar 22, 2012, 12:23 PM

No problem. It must be tough for her not having good skills expressing herself, language and speaking has been my greatest help in life. If she doesn't get annoyed by it, you could try to ask her things, like is THIS or THIS the way you feel... Is this what you mean, or maybe this?... etc. Personally I would have gone mad been asked that, I would have seen it as nagging, but I've also seen it help some people.

SeekerofLight · Mar 22, 2012, 07:00 PM

Yeah, maybe I should be more specific with her when I ask her questions. It's just so very hard for me not seeing her. As far as the ADHD goes, I think her father uses the meds to control her. She has no problem focusing on things that interest her, it's just the school work that she doesn't like. Now she's convinced that she needs a stimulant at 15. I may have her tested while she's here.

dragonfly2 · Mar 24, 2012, 02:16 PM

Something else to consider while you have her there is finding a speech-language pathologist to work with her. Even once a week can give her a good start on learning things like social skills, body language, the idea that someone might feel differently about something than she does ("theory of mind") - I have a 14 year old who, up until a couple of years ago, was given the full alphabet soup of diagnoses. She was finally diagnosed with Asperger's, but also has ADD and probably a soft bipolar disorder of some sort. Once we got the AS identified and got her into some social skills training, everything else fell into place. She was kicked out of first grade for being too aggressive - now she's a very successful mainstreamed eighth grader who actually has friends!

Now, even though the clinicians are called speech-language pathologists, they don't just work with people with actual speech problems. They work with all types of communication issues, which includes the social skills and unspoken communication issues seen in people on the autism spectrum. I've found a link for you for the CT SLP Association - this is a referral list with quite a bit of info. It may just take a few sessions to get the ball rolling and a formal diagnosis to give to the school to get her the help she needs. I'm not sure of your custody situation, but there may be a way to get the courts to mandate that her father gets her the services she needs.

I hope things work out well for you all.

Here's the link: http://www.ctspeechhearing.org/publi...directory.html

SeekerofLight · Mar 25, 2012, 10:25 AM

Thank you so much, dragonfly! She was in speech therapy when she lived with me. It really helped her a lot. I'll check out that link.

Right now her father has full custody. I've always left it up to her to decide where she wants to live. She's chosen him for the past 5 years. If she asks to stay here when she comes then I'll go back to court. I know she's not getting any services with her father, and it angers me. I did write to the school down there and explained her situation to them. They took my suggestions to heart and got her an IEP and a mentor in high school. She gets good grades but gets teased a lot. There is a wonderful school here specifically for Asperger's kids that I'd love to get her into. But she has to want to live with me first. One step at a time!

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