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Old 07-30-2010, 11:51 AM   #1
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ccmitche HB User
PDD Question.

My daughter was dx'd with pdd nos when she was 5 y/o. She is now 12 y/o. She has done OT and Pt. I recently noticed major social issues. I really always noticed but thought she would do fine when older.

Anyway, she does not share emotions or open up to anyone. She will tell me she's upset but only is brief with her reason. She's not able to hold a conversation related to feelings and stuff for more than a couple minutes.

She does not initiate conversations with others and when others initiate with her she just does the yes and no answers and doesn't carry the conversation farther by adding to it etc.

She doesn't ask other's questions in any attempt to know them.

I have occasionally seen her write something down about how she feels on paper.

This is confusing...is she capable? Are pdd kids capable of it in writing but not verbal? Her writing is not that detailed but will sometimes say somethign about how she was crying about soemthing. or doesn't like something etc.

IS her not sharing feelings related to pdd or is that more emotional?

 
Old 08-01-2010, 09:39 AM   #2
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Re: PDD Question.

Hi have a daughter who is now 25. she became the same way with puberty. they do have it. and her withdrawl she did not want to go to the store get out of the car it got bad. really bad and i had no one to turn to.

all you can do is be patient. keep up any and all therapy in schools. some paretns think ok they are doing ok lets stop or the school will. do not stop.

time to began on working on social and life skills. schools do not bring this stuff up.
i had two friends whose son's have hit puberty and they did not believe what I told them about my daughter and now they say how much thier child has changed. it does get better again. it took my daughter from age 12 to just 2 yrs ago to get over it.

remember your teenage years.. we all get odd during that time and defiant or secretive or sad.

 
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Old 08-01-2010, 03:02 PM   #3
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Re: PDD Question.

I have battled the school for many years. They would not offer my daughter any services and they would not acknowledge her diagnosis.
I have gotten services privately and she did better after the OT and stuff. She had a very hard time writing when she was younger along with coordination and balance.
She is having a hard time writing again too. Also, when she runs her feet go outward. I'm looking for OT and PT again. It's harder to find now than when she was younger. I have her on the waiting list for OT and PT at one place and I'm continuing to look at what else is out there.
I did find a social skills therapy. It's drama based social skills. It's about 45 min. away but it's the closest I could find. That starts up in September. She has to meet with the doctor first. They meet all the kids and divide them bases on where they are and their personalities etc.

It's difficult when no one really believes it. I shouldn't say no one sees it but the school does not and her father does not. Her father doesn't live with us and has minimal contact.

The school acts like the problem is me. It's very frustrating.
She was diagnosed when she was 5 y/o. I have her scheduled to get tested again by a developmental pediatrician so I can see exactly where she is now and what I need to do.
The previous diagnosis was made by a neuro-psychologist.

My daughter wants friends and wants to fit in and wants to be like the other kids, but she doesn't know how. She gets very sad and discouraged. She considers herself "not normal".
Her younger sister is 10 y/o and she's popular and does everything well...as far as physically...she can ride a rip stik and skip, and do kart wheels etc.

I try to point out what older D can do well and encourage her, but she's very resistant towards my suggestions.

I'm glad that your daughter is ok again. I hope we get there too. I was told by a speech pathologist that she may never be able to pick up social stuff but can at least mimic correct behavior. I hope that's not the case.

 
Old 08-01-2010, 03:55 PM   #4
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Re: PDD Question.

HI I hope this link is ok. It is gov link for special ed. www.idea.ed.gov and see www.disabilityinfo.gov see education.

It has gotten worse since my daughter began. I used to think how not much was known but then when I realized there was boom of autism I thought maybe we got lucky. They most likely will always have social issues. I got to meet the man who Rain Man was based on her lived in my state. He died last year. He could memorize many books but he could not button a shirt or shave. His elderly father had to help him. Another man knows the entire chicago transit system so he works for them but he cannot dress himself either.

My daughtere is also devel. delayed but we will always have limits. I am ok with that. It could be worse. Things will come and go but the autism is there. she will continue to learn as mind did into adulthood. Look at she can do not what she cannot. Push for therapy. you can sue and you can now make the school pay for the outside therapy.

 
Old 08-01-2010, 04:26 PM   #5
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Re: PDD Question.

You are already doing what's best for your daughter. You know best what she needs. I encountered the same school environment 15 years ago, and they thought all the problems were because of me or because my son was "rebelious". They didn't have a clue how to deal with Aspergers, and nothing was ever their fault.

It sounds like your daughter is focusing on her faults - what others can do that she can't. It's very hard for us to recognize our strengths. They just seem normal to us, and nothing to speak about. It never occurs to us that other people can't do what we can do, only that they can do things we can't. One thing that helped me with this was learning about the Myers-Briggs Personality Types (MBTI). I found my type, which is an INTJ. Much of the literature lists both the strengths and the weaknesses of each type. I totally related to the weaknesses, but found it almost impossible to believe the strengths. It took months of study, evaluating myself, observing myself in action, and talking to friends about it before I could see my own strengths. And I was about age 35 when this happened.

This social skills therapy will be very good for her. She will meet others who need to learn the same skills, so will be less embarassed about it. The kids will learn how to interact and talk about various topics in a safe environment. They will teach her how to do small talk, and why it's important. Some of these groups even take the kids out to eat so they can learn appropriate social behavior in public. I always find learning easier when in a group of other people who are as ignorant as I am on the subject. That way my flubs don't stand out, because we're all messing up, and laughing about it, instead of hanging our heads in shame.

Your daughter will probably do better in one-on-one situations with friends, so I would encourage you to let her go visit friends, or have one at a time come over. Let her and her friend be by themselves, doing whatever they enjoy. She will learn communication this way. Multiple friends at once are fun sometimes, but if she's like me, she will clam up as you add more people to the mix, and not get as much practice "doing", though even observing conversations is helpful.

Last edited by roses4lace; 08-01-2010 at 04:27 PM.

 
Old 08-01-2010, 06:19 PM   #6
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Re: PDD Question.

The test you mentioned they can give in a modified way to special needs people. I took the test in high school part of an apptitude test.

She is out of school now and had school frriends. Now she is an adult day program to get out and about and be with her peers. She likes it. It was hard but before that we traveled a lot. then it got hard. she developed transition anxiety bad. No meds for that. tried prozac to no avail. never thought I would get her on plane and she loves to fly. we got to take a cross country trip and out of the country. never thought it would be possible. she has behavior issues. severe cases usually do. you pick the good and the bad. and make what you can with them. if you love her she will at least now she has one good friend you.

last week i read about a lady in TX who killed her two autistic boys then a lady killed hersself and her auti son. that made me cringe. we have had bads but not that bad. i raised her as a single parent and her brother had to help a lot. not been easy but it could have been worse. i have a friend who has five kids 4 have autism her now ex was dx with aspergers.daughter is bipolar. she is my hero. push the schools and threaten them legally if you have to. i had to once or twice. when in doubt contact the state board of ed and rattle some cages.

 
Old 08-02-2010, 10:00 AM   #7
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Re: PDD Question.

I do take the good with the bad. I think the stuff I struggle with is the not knowing. I feel like I have gone to hundreds of professionals over the years and no one gives me answers of what to do or what to expect etc. I was told to read Love and Logic along with other stuff.

I don't know when to give my D consequenses and when she can't help her behavior. I know when she's out of control then it's pointless to discipline. I try to help her regain control and calm her down etc.
She's very high functioning and it's easy to forget something is wrong. I don't always know when to discipline or when to over look things etc.

I realized yesterday that I was too hard on her. She wanted to make pancakes and I let her. I should have known that I needed to help her. She had the recipe and was following it. I don't know what she did but it did not work out. She got mad. I got upset and told her that she needed to get back in the kitchen and clean up her mess. I offered to help her. She just screamed and banged her head against the wall etc.

Then later she was calling her sister names and being mean and disrespectful to me and younger sister. Younger sister then hit D and I made both of them sit down on the couch. I first talked to younger D and she tried to blame D for her behavior. I told her that it's her fault she hit and she needs to sit there until she takes responsibility for her own behavior. She eventually said it was her own fault that she hit and we discussed what she could do next time. She appologized to D and she lost the computer for 24 hours....if her behavior is good..if not she looses it longer.

I then went to pdd D and asked her about her behavior. She wouldn't admit what she did and how she contributed to the fight. I tried to help her and she got mad. I told her to sit there until she takes responsibility. She freaked out on me and started screaming, throwing stuff, banging her head, and using objects to hit herself in the head.

I eventually got her calmed down. After she was calm I told her that because she called her sister names and was disrespectful to me she also lost the computer.

Is my discipline too much for her? I don't know what to do. When she was calm I told her that her head is far too precious to hurt by banging and tried to get her and I to come up with some ideas of other things she could do when frustrated and she refused and started to get mad so I dropped it.

I took her shopping yesterday for school clothes. She put on some weight this summer while at her dads house in June. They eat very fatty and greasy foods at his house and she does not get exersise at his house.

I have her riding her bike daily and send her to walk the dogs and offer her healthy food. She's also swimming 3-5 days a week. She hasn't lost the weight yet. I don't care other than I want her healthy and want her to feel good about herself.
The clothes weren't fitting her well when we went shopping yesterday. The clothes she tried on were not flattering at all. I asked a sales associate for assistance and quietly told the lady that I was looking for trendy clothes that are flattering. I said this with my daughter on the opposite side of the store so she didn't hear me.
The lady found some things that looked really good on my daughter. My daughter was so mad that somone else was helping. My daughter will not wear certain fabrics so I made sure everything that went in her dressing room was fabrics she will wear.
I don't know she just gets mad and embarrassed over things that don't make sense to me.
Since she has a little extra weight on her some of the clothes looked bad. I did not tell her that though. I told her they didn't fit right. I think part of it is that she was tired of trying on clothes and she was getting hot. She kept telling me that she was hot and didn't want to try anymore on. However, she was upset about leaving w/o a new outfit too. We left with a few outfits but she was irritated with having to try on so many clothes.

 
Old 08-02-2010, 10:59 AM   #8
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Re: PDD Question.

The discipline issue is hard as parent. I work as a sub with special ed students. In school they have to go by the rules. At home well we know as parents we can either expect to much or baby them. For years since my daughter is low verbal i had no idea how much she understood. More than I thought but you are right that sometimes they just cannot control it. My stbx not her dad thought she could and we fought over it. The experst were not there 15 yrs ago. They do not know. Love and logic huh. Have to go find it.

For autism it is a give and take thing. As for the clothes she does not like going to the store so I have to guess on clothes sizes. thankfully she is petite so shirts are easy and pants i stick to sweat style for her. she breaks buttons by playing with them and she has a gi issue. shoes i dread having to get her to store so i have go to payless when there not many people. she hates it when people stare at her. just read about a store in Calif that was started for this reason. I am starting an autism biz in Canada for things they do not have there.
the store is stare free lol!
lived there for whle and came back glad for the things we do have here.
there are no easy answers. i had a high function auti girl one day just suddenly get up and run away in class one day. cannot touch them or not supposed to but i eventually had to corral her back to the class. i would go see my daughter at school and she would often be better there than with me.as for the kitchen thing they call those life skills. teach what she can do. like maybe a simple mix or pre mixed stuff and to just add water and shake in a bag or bottle a cook taught me that one. use a plastic container with a lid to shake the stuff up.

easy to prepare foods. there is info on this on the net and the school could work with her on it they knew how. i wrote things like going to the library or the movie into her iep. her teachers had not seen it before. a group out of Calif had helped me back int he day before all these things were on the net!


i love my daughter but just hate the autism. now I know i am not alone. the govt is not ready for them as adults.

Last edited by hb-mod; 08-02-2010 at 02:01 PM. Reason: Removed Quote, please use "Quick Reply" rather than "Quote Reply"

 
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