New here, mom of 6 year old, lots of questions

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hannahsmom
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20 Jan 2007, 9:02 am

So we have just started the testing with my 6 year old daughter. At first we were told PDD NOS, but now they are leaning more towards Aspergers. Of course it depends on the day and the doctor/therapists we are talking to at the time. It has been a very stressful time, I just want to know what it is we are dealing with, so we can start to help her. I think because she is a girl she is having a really hard time. Girls are "supposed" to be social and talkative. My heart breaks on a daily basis over the way she is treated by the "mean girls" in our neighborhood. I would appreciate anyones first hand input on what we are dealing with. We are going to stat therapy sessions with a play therapist next week and we have an eligibility meeting next week to decide what to do for her at school. I would love to know what services some of you have received at school to help you through this. TIA for any and all help.



Starbuline
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20 Jan 2007, 9:26 am

Welcome to WP! :o



Tim_Tex
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20 Jan 2007, 9:37 am

Welcome to WP!

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Starr
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20 Jan 2007, 10:33 am

Hi hannahsmom,

I'm sorry to hear about they way your daughter has been treated, it must be very upsetting.

Do check out the other forums too, I think you'll find the Parent's Discussion Forum very helpful.

A warm welcome to WP. :)



Phantasmagoric
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20 Jan 2007, 1:27 pm

Yes, yes; welcome. I warn you, though, she mayn't "like" the therapies, as they are only tools to brainwash her into being neurotypical,(brain normal) which may degrade her intellect. Remember: AS is not a disease; it's a disorder syndrome. It's not the reason of weirdness; it IS a state of weirdness.



mcewen
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20 Jan 2007, 4:21 pm

Welcome. As you already know, you are in an exclusive minority. In my limited experience, you are likely to get as many different 'labels' as the 'experts' that you consult.
I would suggest, respectfully, that if possible, you try and think of the labels as a 'mere' ticket to services rather than a definition of your child.
I am confident that you and your family will flourish after the initial shock [not that I wish to any way belittle those emotions]. Play therapists, social skills therapist etc. will be able to advise you on the specifics of your daughter's needs. I have two close friends who have autistic girls and again they are in a special minority, but hopefully you'll be able to 'network' to find other girls similarly situated.
Wishing you all the best
http://whitterer-autism.blogspot.com


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20 Jan 2007, 5:11 pm

Welcome!

Together we can slay the curebies!



Roxas_XIII
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20 Jan 2007, 5:45 pm

mcewen wrote:
I would suggest, respectfully, that if possible, you try and think of the labels as a 'mere' ticket to services rather than a definition of your child.


Yeah, that's what i thought too, until some whack-job school official with a hidden agenda flat-out told my parents that it was their fault i was this way, and that it was better that i was permanently commited rather than attending school. I still think about (insert most horrible and painful murder method you can think of)-ing this lady whenever i think about this incident.


If your daughter is anything like me, she'll be the extreme 'absent-minded professor': smart as a whip, but with barely any social skills. People may tell you and your daughter that she needs 'help', and may describe different solutions to her 'problems', not all of which will be in her best interest. It will be up to the two of you to sort the good from the bad, but remember this: your daughter may be different, but that difference is only negative if you let it be so. I personally think of AS as a blessing: my lack of social skills has caused a subsequent lack of interdependency on my peers as i have grown. I have grown socially be being in the mainstream school system (which is probably the best thing you can do to help her, BTW), so i can understand my peers to a point; yet my mind is free and not clouded by the opinions or influences of my peers. To put it metaphorically, if independence were light and complete interdependence darkness, i would exist in the twilight.

Just remember, AS doesn't have to be bad.

Oh, and about those "mean girls", i can loan you a few shurikens to chuck at them if they get too agressive...

Roxas


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mcewen
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20 Jan 2007, 5:58 pm

I would again 'suggest' that Roxas words remind us all that despite the media's 'sexy' attention seeking reports, this is so very far from the truth for both people on the spectrum, as well as those people's parents and friends.
It's is better to have one true friend than a whole load of hangers on.
Best wishes
http://whitterer-autism.blogspot.com


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hannahsmom
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20 Jan 2007, 10:54 pm

thanks so much for the warm welcomes...As far as school goes, we are fortunate enough to be working with some really great people, who honestly do just want the best for Hannah. Although, there best and our best may not be the same, this is still to be determined at her eligibility meeting next week. She will get Occupational therapy and right now we are just pushing to have her switched to a better teacher. One that understands her and will help her. We are thinking of switching her back to private school next year. Most of the kids there were a lot like her and are raised they same way. you know to be nice to people even if there different than you. Plus the class ratio is 1:12 vs 1:24. I know this is going to be a process I just want to help her and protect her the best I can. As far as labels go, you are so right. I just want to find a therapist that will treat her specifically and not whatever "condtion" they think she has at the time. Again thanks for the advice.



Gem
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25 Jan 2007, 1:08 pm

Hi,

I am also new and found this thread interesting. I work in an ASD provision and I worked as an ABA therapist before that. I understand that 'curebies' as they were called in one post can look like they are menacing types but I am on the other side and I promise you that we arent all like that! I actually believe that I have lots of Aspergers traits (the more I encounter at work, the more I believe this is true) and I have to admit that when I first started out training in ABA I did think, Oh my god, this is cruel, who would want to be forced into this world? but after getting to know more I looked at it in a different light. I am not trying to separate people with ASD from those without (which by the way, I actually think we are all on the Spectrum somewhere), quite the opposite. In my work with young children I am just trying to teach basic life skills that will help them to cope in society. I do not intend to 'cure' or remove the Autism, this would be completely wrong of me.

I hope I am still welcomed to the forum, I actually am very willing to find out more from people who have a diagnosis. I want to know what it's really like and hope that this helps me develop.

Gem



maria
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29 Jan 2007, 9:48 pm

I want to tell you I started testing my daughter at age six and at approxamately, age 8 they gave me a defanite diagnosis. We have been in therapy for the last 3 years just to help her deal with the frustrations in life. The simple child calling her a brat mean devistation for her. She has no social skills. She likes other children but they call her ret*d or other names. It is very upsetting when you can not help your child with the other children. Remember there are groups that offer sports role playing for children with Aspergers and generally they are reasonably priced. She is a very happy child in her way and we have learned that she might not be the most popular child but in her world she is the only child which to her is the greatest.

Good luck and keep your head up things get better and all the great things your daughter will do will make those awful days go away.

:)



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30 Jan 2007, 12:35 am

Good luck with the play therapy! My aspie is 8 and he's been going to weekly play therapy for 18 mos. It has helped him in so many ways! If you have any questions, PM me. I'd be happy to chat about it. :)



killer_cupcake
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30 Jan 2007, 8:26 am

Hi, I've got a 6 year-old aspie too, though he is the outgoing, talkative sort. The sort who won't STOP talking, but that's another story. My son definitely has benefited from supervised/guided social play. We joined a small group through his OT where he played once a week with 3 other kids his age who were also dealing with social issues. He learned some skills in that group that I can see have helped him getting along with other kids at school. I hope you find some help dealing with the teasing/mean girls. That's just heartbreaking stuff.



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30 Jan 2007, 9:47 am

killer_cupcake wrote:
Hi, I've got a 6 year-old aspie too, though he is the outgoing, talkative sort. The sort who won't STOP talking, but that's another story. My son definitely has benefited from supervised/guided social play. We joined a small group through his OT where he played once a week with 3 other kids his age who were also dealing with social issues. He learned some skills in that group that I can see have helped him getting along with other kids at school. I hope you find some help dealing with the teasing/mean girls. That's just heartbreaking stuff.


Ha! Your son and mine should get together. He's a talker too. :wink:



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30 Jan 2007, 12:56 pm

hannahsmom wrote:
So we have just started the testing with my 6 year old daughter. At first we were told PDD NOS, but now they are leaning more towards Aspergers. Of course it depends on the day and the doctor/therapists we are talking to at the time....


tbh i doubt it makes much of a differance. I suspect (without knowing too much about it) that the labels dont have a great deal of clinical value, & its all a big multi-faceted spectrum with every AS/PDD-NOS child having individual sets of traits, sensitivities etc. The labels are probably just are just a way of the medical community trying to come to terms with something they dont fully understand yet. In the future theyll either group them together, or subdivide them even further so i wouldnt worry too much about it.

The important thing is they seem to be all agreed on your daughter being on the autistic spectrum. Thats what you need to know to understand her as she grows and develops in her own unique way.

Then again what do i know - i dont even know any children really. All the best anyway :)



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