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post #21 of 97
Thread Starter 
Quote:
Originally Posted by physmom View Post


I'm not sure where you live in Europe but amazon.de has it and ships to more than just germany: http://www.amazon.de/Misdiagnosis-Diagnoses-Gifted-Children-Adults/dp/0910707677/ref=sr_1_2?ie=UTF8&s=books-intl-de&qid=1298157234&sr=8-2


 


Thank you! Thing is, amazon appears to take longer to ship than anyone (1 to 2 months? Come on! Are they rowing across the Atlantic or what?)

i am now putting my hopes in buecher.de.

post #22 of 97

Wow, that's crazy! When we lived in Germany many times they'd ship the next day and it'd be here a few days later!  I wonder if they just don't have the book in stock or something?  Also check amazon uk too. Good luck!
 

Quote:
Originally Posted by Tigerle View Post





Thank you! Thing is, amazon appears to take longer to ship than anyone (1 to 2 months? Come on! Are they rowing across the Atlantic or what?)

i am now putting my hopes in buecher.de.

post #23 of 97


Ach!  You have to read this one if you're dealing with 2E!  Do you have The Mislabeled Child?  That's another must read.

 

Have you been reading the Eides' site?  There are some great articles there - not the blog (which is also great), but the website with articles.
 

Quote:
Originally Posted by Tigerle View Post





Thank you! Thing is, amazon appears to take longer to ship than anyone (1 to 2 months? Come on! Are they rowing across the Atlantic or what?)

i am now putting my hopes in buecher.de.

post #24 of 97
Thread Starter 



 

Quote:
Originally Posted by joensally View Post


Ach!  You have to read this one if you're dealing with 2E!  Do you have The Mislabeled Child?  That's another must read.

 

Have you been reading the Eides' site?  There are some great articles there - not the blog (which is also great), but the website with articles.
 


 


Yep, have a well-used copy of the Mislabeled Child. I only know the blog, not the website though. 

It's annoying because I meant to order weeks ago, figured I might find a faster shipment than the one amazon offered and then forgot to follow up...

 

Quote:
Originally Posted by physmom View Post

Wow, that's crazy! When we lived in Germany many times they'd ship the next day and it'd be here a few days later!  I wonder if they just don't have the book in stock or something?  Also check amazon uk too. Good luck!


Nah, it wouldn't be in stock - the market's just not big enough for the subject! What I don't understand is why it would take them over a month to import it. Usually it's only about 10 days for imported titles...
 

post #25 of 97
post #26 of 97
Thread Starter 

So I managed to reach the office assistant again. The results of the developmental test are in and according to her, are “borderline”. They would be. So they are going ahead with the testing in two weeks (ADOS and ADI). We could have gone ahead next Friday but  1) DH would have to be covered in school (he’s a PS teacher) and has the next week off anyway, 2) DS is sick with a 40 C° fever and will probably need the week to recover and 3) it’s carneval week in preschool (this is a BIG deal here, way bigger than Halloween) and I hope he’ll get to enjoy at least the end of the week dressed up. I’m probably going to regret this occasionally but would regret it even more if i could not let him enjoy a bit of carefree carneval (he LOVED it last year, it really changed his attitude to preschool).

 

I asked if we could have the subtest results to understand what “borderline” was supposed to mean. She said they don’t like giving out preliminary results so there won’t be “bias” but we will get a full eval report at the end. But she’ll ask the psych.

As she has never followed up on anything without repeated prompting i kinda think we will have to wait, it isn’t worth it to me to make a fuss over at this point.

 

I realize I was kind of hoping this would blow over with “there isn’t really a problem as we thought”. So we’ll remain on the fence. I will have to remain on this fence for quite a while, I suppose and have to make peace with not knowing as Linda says.

 

I know I am not alone here, I am thinking of all of you who are where we are.

Thank you for listening.

post #27 of 97

I am in exactly the same place - totally understand you. We're sitting at least on a tentative AS diagnosis, getting an IEP today, but don't have, and won't have an "official" diagnosis until probably April. I promise, after all the testing, waiting, online-scaring-myself-to-death with possibilities, checking out everything I could at the library, and emotional realization/acceptance of Aspergers....well, there will be some hair pulling involved if April brings a PDD-NOS decree. I could have come up with that by myself, no offense to the professionals.

I hope little one soon feels better and can make it to the carnival! And you hang in there too. I try to remember that DS is the same DS either way - whatever it's called - so I'm just doing what I've always done... The best I know how at the moment....

post #28 of 97

OP- I'm a little nervous I've been in denial about dd (4.5yo). Your house sounds so much like mine but when I first read this thread, I thought, "Awww man, I wish I could give her a hug." Then this week went on and I realized my dd sounds a lot like your ds. So, is it time to seek some help/advice? Maybe this requires a thread of my own.

post #29 of 97
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Quote:
Originally Posted by Casha'sMommy View Post

OP- I'm a little nervous I've been in denial about dd (4.5yo). Your house sounds so much like mine but when I first read this thread, I thought, "Awww man, I wish I could give her a hug." Then this week went on and I realized my dd sounds a lot like your ds. So, is it time to seek some help/advice? Maybe this requires a thread of my own.



I realize that if you look at my threads over the last few months (like the one about his sucking my nose at night, and the one about whether it might be AD/HD or sensory issues, and the emotionally delayed?-thread) you can tell how I have moved from denial to "something's going on" to acceptance that he might be on the spectrum. Then I read about loraxc's, joensally's and Lynn's experiences, whose kids are gifted and quirky and goofy and complex but who have not sought or not received a spectrum diagnosis and feel that their instincts were right and their kids appear to be growing out of their issues (even very definite spectrum issues like echolalia and handflapping or inability to recognize emotions in faces) and I start wondering again - should we have waited?

 

But there are two things that make me feel like we need to act NOW:

1) the rejection from his classmates due to his aggressiveness/annoying tendencies (I have known rejection for giftedness and it somehow feels different) - like there is an instinct in these children that might be correct, even if his teachers, while asking probing questions, always seemed to think there wasn't anything serious going on, just something we were doing wrong in our parenting...

2) I feel that there is a slowing down or even regression in some aspects of his development and it does not appear to be caused merely by sensitivities and sensory issues combines with taking more in and having woken up to the socio-emotional expectations of preschool but by inability to deal with these expectations, kwim?

Such as: this time last year, we had started to read chapter books: Pippi Longstocking and Troublemaker street. He loved them. I was looking forward to read so many more, looked out age-appropriate choices.

Over a year later, we still read the very same chapter books: Pippi Longstocking and Troublemaker street. There has been no devlopment here as far as I can see. he refuses to try new books. He wants to read only non-fiction. I insist on one non-fiction book for a bedtime story (out of instinct at first, now bcause I've read about it) and for weeks now, he invariably chooses a picture book about getting a new sibling that he could have listened to as a two year-old. We also still play the same board games for the 3-5 age group that we started playing when he was two. He can't handle th frustration tolerance needed for games for older kids. We've tried!

I mentioned all this to DH (who draws semi-professionally) and he admitted that he felt DS hadn't really made progress in drawing either.

The stuff he does suddenly looks ....age-appropriate. What terrible thing to say isn't it, that age-apropriate might mean something is wrong? but it seems to me that with the gifts he has shown, the support and the upbringing he has had, there should have been more development, but I see stagnation.

 

As he has been sick these days, I've suddenly seen a lot more hand-twisting, aimlessness, facial ticking...all of which sounds like the psych is correct: he has been compensating hard, but it is beginning to break down.

 

Edited to say I apologize, I had to go eat lunch but wanted to actually get to the point you've raised. I realize that things might be even more complicated for you as your daughter is also, IIRC, hearing-impaired with cochlear implants...but my point is that I think that if I had kept seeing a development for the better with DS's issues, I probably would not have decided to seek an evaluation. But we tried to implement all sorts of structures and routines and some things got better, but others got worse and the stagnation in development has now become clear to me, too.

post #30 of 97
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Quote:
Originally Posted by The artist View Post

 I try to remember that DS is the same DS either way - whatever it's called - so I'm just doing what I've always done... The best I know how at the moment....



 The scaty thing for me is that DS does seem to me to have changed as he has become quirkier and I am afraid that an AS diagnosis will mean that he will become quirkier still, as the gap between him and his NT peers grows.

I keep reminding myself that DH and I were quirky kids and grew into functioning adults. I was hoping DS might have an easier journey of it but it looks like it might be harder...

post #31 of 97


 

Quote:
Originally Posted by Tigerle View Post

 I am afraid that an AS diagnosis will mean that he will become quirkier still, as the gap between him and his NT peers grows.

.


I don't understand. Are you saying that you are afraid that if you get your child a diagnoses, that having the dx will cause a bigger gap? or are you saying that if your child qualifies for the dx, then that you will know that you are dealing with the bigger gap? There's a difference.

 

If you child qualifies for a dx, his future most likely looks a little different than if he doesn't qualify for one. BUT if he qualifies and you don't bother to get one, IMO, he has the worst future. He'll need extra help to reach his potential, but won't have access to that help.

 

My DD is officially both gifted and on the autism spectrum, and has a great future ahead of her. She's in a special school, but taking college prep classes. We are looking into colleges. She plans on grad school.   If we stuck our head in the sand and pretended she was NT, she'd have no future. None.

 

Just because someone is on the spectrum, it doesn't mean that they can't grow into a functional adult. It does mean that they will need a lot more help and support to do so.

 

(also -- my DD tends to go through long periods of stagnation and then sudden leaps. She also sometimes goes backwards in one area when moving forward in another)

post #32 of 97
Quote:
Originally Posted by Tigerle View Post

 The scaty thing for me is that DS does seem to me to have changed as he has become quirkier and I am afraid that an AS diagnosis will mean that he will become quirkier still, as the gap between him and his NT peers grows.

I keep reminding myself that DH and I were quirky kids and grew into functioning adults. I was hoping DS might have an easier journey of it but it looks like it might be harder...


hug2.gifIt's a hard thing to wrestle with. It's hard to stand at the brink of a diagnosis (or not) and contemplate what that means.

 

Just remember, even if your ds has a bigger gap, he'll also be getting interventions that will help him learn at an early age. You and your dh didn't get those, I'm assuming. I just see the difference between my ds, who has major sensory issues, and my dh, who has major sensory issues. Dh has learned to deal with them, but at times, it takes an enormous amount of his energy, even as an adult. Ds' sensory system developed differently because of the occupational therapy started at age 5. He's still got sensory issues, but his ability to cope is much higher, and it doesn't take as much energy. I'm hoping for the same thing for your son, regardless of his eventual diagnosis. He can learn to automatize some of the social interaction, even if it doesn't come naturally.

post #33 of 97
Quote:
Originally Posted by Tigerle View Post





 The scaty thing for me is that DS does seem to me to have changed as he has become quirkier and I am afraid that an AS diagnosis will mean that he will become quirkier still, as the gap between him and his NT peers grows.

I keep reminding myself that DH and I were quirky kids and grew into functioning adults. I was hoping DS might have an easier journey of it but it looks like it might be harder...



Tigerle, I'm sorry it's so rough right now.  My experience with my kids is they cycle a bit, sometimes things feel more acute than at other times.  I also think of it as from infancy on children are blossoming (sorry, that's just a terrible turn of phrase, but it's what I've got right now!).  Anyway, kids are constantly emerging, shifting, growing, moving forward, moving backward, staying still, spinning.  This is important to remember - the child you are observing today is one part who he was, another part who he is in the moment, and another part who he'll become. When I look back I can see how we got to where we are now, and make some guesses about the future.  I can make informed choices about what to do based on what I know of the past, the present and where I want to head with my son in the future. 

 

With your son, like with my son, I think many of the approaches and needs will be identical with or without an ASD diagnosis.  Learning self-regulation skills and sensory management strategies, social skills coaching, intellectual stimulation.  There are ways to help him close that gap.

 

I know that all of this is so much more loaded for you given the limited range of choices available to you where you live.  I can't imagine how difficult this must be to consider navigating.

 

More reading suggestions.  :)  I quite liked the descriptions in Kids in the Syndrome Mix of ADHD, LD, Asperger's, Tourette's, Bipolar, and More!, and appreciated how it illustrated how complicated teasing it all out can be.

(with preview)  http://books.google.com/books?id=DmUpCSlnmKAC&printsec=frontcover&dq=syndrome+mix&hl=en&ei=0tNqTdGSFor6swOAieWmBA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDAQ6AEwAA#v=onepage&q&f=false 

 

I also enjoyed the Oasis Asperger's book, and the site has lots of info.

http://www.aspergersyndrome.org/

 

I hope your wait isn't too long.  Unfortunately, with kids like ours, not even assessments are always definitive, which is hard emotionally and psychologically.   I think it's Linda who said in a thread that it's making peace with not knowing or having certainty (sorry if I butchered that!). 

post #34 of 97
Quote:
Originally Posted by Casha'sMommy View Post

OP- I'm a little nervous I've been in denial about dd (4.5yo).

Ditto here.
post #35 of 97
Thread Starter 

Thank you for your support.

 

I'm feeling better now, after a good night's sleep - two nights of being up almost every hour tending either to the needs of a very sick preschooler or a very needy infant who I am sure feels that I am somehow absent have taken their toll, and have made me more despondent than I should be! A friend has reminded me that I may need to look into support for myself, if we end up with a diagnosis. I owe it to myself and my family I suppose, but I just can't handle more appointments at the moment. I am constantly exhausted as it is, even though it is on the surface not that much I am doing.

 

Quote:
 I don't understand. Are you saying that you are afraid that if you get your child a diagnoses, that having the dx will cause a bigger gap? or are you saying that if your child qualifies for the dx, then that you will know that you are dealing with the bigger gap? There's a difference.

 

The latter of course - I understand that an AS diagnosis does not change who my child is, but it will change my expectations about what he might become. I had been aniticipating advocating for a gifted, quirky child, and while i know from my own experience how hard that can be, I felt i was somewhat prepared. I was not prepared that we might be looking at special needs. Or the fuzzy bit in the middle. I mean who is? You've all been there.

 

I fully understand that putting my head in the sand and waiting for it all to blow over might mean waiting for it all to blow up, and denying my child options in the meantime. Butbutbut:

 

I live in a country where autism carries a definite stigma, where people simply aren't aware of the differences between hospitalism created by neglect, classic autism with mental retardation and the high functioning/Asperger part of the spectrum and of the different needs of these children. Heck i live in a country where giftedness carries a stigma! (The first gifted programs around were established in 2006, and need to justify their existence at every step. My mom clips newspaper articles about gifted kids who finish high school early with straight A's while being enrolled at university at the same time and every time there is a passage about how the kid doesn't want to be called gifted, don't want to tell their IQ to the paper, how they are really quite normal, with teachers confirming they were actually nice to their classmates and always happy to have their gifts serve others in their learning, that yes they do play sports and have friends just like anyone, in short that they can justify their existence. It's sickening). I read about the advocacy and the fights y'all go through in order to get accomodations and services for your gifties and your 2es but at least the idea of gifted education has been around for generations, with generations of research and experiences. And there is inclusive schooling with services provided through school for 2e children.

 

I just hate people's attitude to all this around where I live. hate hate hate. There is a reason I hang out here.

 

I mentioned our interim results in the eval process to the osteopath who first encouraged me to seek an evaluation for AD/HD and she agreed that if the diagnosis was in any way fuzzy, it was imperative to avoid any diagnosis with the word "autism" that might lead to a special ed designation, and if he does need therapy to go for anything else that might him provide the therapy without the stigma. She suggested AD/HD, which however I am sure now does not apply, I am thinking pragmatic language disorder, nonverbal learning disorder or SPD. (Unlike in the DSM-IV, PDD-NOS does not exist as a diagnosis in the ICD-10, instead there is a diagnosis called "atypical autism" for children who do not show all the symptoms, or atypical onset of the symptoms, auf classical autism. A highly verbal child like DS, if considered to be on the spectrum, would receive an Asperger diagnosis after age three).

 

I think there are schools, like the local Montessori, where he does just fine in a once-weekly K class, but which would not be allowed to accept him with a special ed statment, which would serve him MUCH better than the local special ed school for children with "socio-emotional difficulties" . I read somewhere that putting gifted sensitive Aspies with soial difficulties in these classes together with emotionally disturbed children who come from difficult backgrounds but who are socially highly astute and streetwise is tantamount to providing the perfect victims to the perfect bullies. Even the local public school which would have to accept him if his statement qualified him as a candidate for inclusion who I am sure does very well by regular kids would not know what to do with him. At all.  And I still think he is gifted, even though he came across as a child that had rote-learned all his information in the first consultation, and there is no way special ed would provide him with the mental stimulation he needs (and i know this may be different for other countries, too).

 

Quote:
 

I know that all of this is so much more loaded for you given the limited range of choices available to you where you live.  I can't imagine how difficult this must be to consider navigating.

 

 That's it. Word for word.

post #36 of 97

Wow, I never realized that a diagnosis could make such a difference in other parts of the world.  It seems like here in the US, the diagnosis is a good thing because it opens up the world of special services, IEP's etc.  It sounds like it is very different where you are.  It is good that you are educating yourself on the best way to get what you need for your child.  How sad that even giftedness is considered a "problem" where you are.  Good luck with your journey.  I hope that you find some good answers and some good colutions that work for you and your DS soon.

post #37 of 97
Quote:
Originally Posted by Tigerle View Post

I live in a country where autism carries a definite stigma, where people simply aren't aware of the differences between hospitalism created by neglect, classic autism with mental retardation and the high functioning/Asperger part of the spectrum and of the different needs of these children. Heck i live in a country where giftedness carries a stigma!


how stuck are you there? 

 

Last year we had to move for my DH's job, but we chose in the move to come to a city with an amazing school for our DD. We planned the move around getting the best education for our 2E child.

post #38 of 97
Thread Starter 



 

Quote:
Originally Posted by Linda on the move View Post




how stuck are you there? 

 


Very.

Professionally and as a family.

We can easily move to a neighbouring state (are planning to in fact, and one of the reasons are better schooling options) but we won't leave the country.

And while I don't like this country's educational system much at least I know it inside out (okay, special ed is a new one to me, too) which will make me a better advocate.  

 

Edited to add that if we end up with an AS diagnosis it may compromise my ability to ever go back to paid work, but I sure got a new field to pour my energies into cut out for me!

post #39 of 97


 

Quote:
Originally Posted by Tigerle View Post


The latter of course - I understand that an AS diagnosis does not change who my child is, but it will change my expectations about what he might become.



I would like to encourage you to try something...

Are you able to spell out how it will change your expectations about what he might become. I think putting that into words might be a helpful step. I know it is often the big stuff I don't put into words that I fear most.

post #40 of 97
Thread Starter 
Quote:
Originally Posted by Roar View Post


 



I would like to encourage you to try something...

Are you able to spell out how it will change your expectations about what he might become. I think putting that into words might be a helpful step. I know it is often the big stuff I don't put into words that I fear most.



I used to love talking with him. No matter how exhausted I was, I always thought listeing to him was such fun. My DH used to say, listening to us in the next room was better than any radio program. My mom used to say “ you can talk with him like you would with a little grown up.” These days more often than not he will ignore what you are saying, just go off on tangents, or spurt downright nonsense or make noises. I am afraid he will grow more incoherent and harder to talk to. He sometimes seems like a stranger to me even now. And I don’t know whether it is my fears projecting or an actual change (though DH admits the recent nonsense-spouting drives him crazy, too). I am still hoping it is just a phase.

 

He has alway been aggressive towards me in his sensory seeking and his fixation with my hair, and never seemed to understand how much he hurt me both physically and emotionally. I thought it was a toddler thing and he’d at some point grow out of it. Now I am afraid he will grow more and more dangerous and hurtful as he grows bigger and stronger but remains aggressive.

 

He was looking forward so much to having a little sister. I was looking forward to him being a big brother. A year ago, on being asked what he wanted for a sibling he said “a sister!  A very sweet one who always plays with me!” Now, on being asked what he liked about having a little sister he opined that it was “practical because we had all this baby stuff to use” (okay, tha tmay be some understandable frustration with what babys actually do.) But he will play very sweetly with her, both lying on their tummies and then, in front of both his parents, just roll over and kick her in the face so she falls over. Giggle and refuse to even look contrite or understand what we are yelling about. I am afraid that their relationship might be more dangereous for her than ordinary big-brother rivalry.

 

I was disappointed that he insisted I stop singing to him at night because all the lullabies made him said. He often stopped from singing during the day, too. For some reason, stuff they learn in preschool is fine for us to sing together, but I have become very wary about singing in front of him. I was hoping that one day we might make music together anyway. Not sure that is ever gonna happen.

 

I was looking forward so much to introducing him to books. All he wants to read is nonfiction. I can’t read any fiction that is not supergentle. I was waiting for him to grow out of this as he matured. Now I am afraid it is not going to happen and  i will not be able to share things which him I care so much about, just like the music.

 

I am afraid he will be very lonely, never realize his potential, want to make friends but be unable to.

 

I am afraid that his quirks will go from endearing to annoying to off-putting and fear-inducing, and that I will not be able to love my little boy as I used to.

 

I have to go now because this is just making me cry.

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