Something to be concerned about? Update....

[Disney Doll]

A few thoughts as I read your post:

~ Go easy on your DH - he's probably just needs a bit of time to "process" things.
~ Go easy on your mother - I've said it before and I'll say it again...we cannot look at previous generations and their actions through "2009" eyes. I grew up in the 60's/70's....believe me when I tell you there was not a lot of early intervention stuff back then...even the 80's were kind of primitive in relation to ADD/ADHD/PDD/Aspergers type scenarios. I am sure she did the best she could with the resources at her disposal at the time.
~ Go easy on yourself. As a religious person, I always say God has a plan for why things happen as they do. A non-religious person might say the universe unfolds as it should. Had you tried starting this at age 3, maybe she wouldn't have gotten the best treatment for her at the time, as you sid, because many behaviors may have been attributed to her age etc.
~ You are doing the perfect thing for her now, to help her
~ If she is diagnosed "on the spectrum" of something, it is not the end of the world. You will get her help, she will learn coping strategies and life strategies. It probably sounds silly and old-fashioned, but when something "unexpected" happens that I think will be terrible, I always try and think of people who have worse issues than me and say "See it could be worse. I could be like so-and-so who's kid is dying of cancer" or whatever. I know, I spent too much time with my mother who's favorite line when you tell her a problem is "You think you've got problems??? Let me tell you about ....." and she goes on to tell some story of someone she knew whose house was burning, they had to jump out the window, broke their leg when they hit the ground and couldn't get up fast enough and got run over by the firetruck!...true story...it was a co-worker! I have also generally found that when the "unexpected" happens, my vision of what will be is usually a lot worse than the reality of what will be.

Good luck with your DD...you sound like very loving, concerned parents and she sounds like a darling!!!!

 

[The Mystery Machine]

Our pediatrician finally referred us to a pysch center in our area. They warned me the wait would be LONG.

So I called the pysch center and the woman asked if we preferred a man or a woman doctor. I said - who ever can get us in sooner!

DH and I go Friday for our first consult. I have to take her report card, and probably the list I made for the doc.

The day I made the appointment I cried, then I went upstairs to just stare at her sleeping for a little bit. I thought about the days when everyone was so impressed on how quickly she picked up on things, and all of the teacher conferences where they said she was a model student, my proud moments where I thought "thats my girl!" Then I thought about how maybe her future wont be quite what I imagined for her, and how hard it is for her to make friends and how lonely she feels. I cried some more and then I repeated the words to myself that JoBird mentioned here, I am HER mom, I can do this, I will do this - for her. I am now thinking with a clear and open mind.




For those of you that have dealt with this was there an age that you told your kids their diagnoses? I know DD knows something is different - but I dont know that I want her to label herself. On the other hand, maybe this will help her realize there is nothing wrong with her - which sometimes now she does feel.

Any thoughts?

My dd was relieved to know what was wrong with her. She thought she was going crazy. Then again she is very insightful.

This is a kid who demanded to know the answer to the Santa question in 2nd grade.

You dd is not doomed to be like this! Moving forward and getting help can be wonderful! You will be surprised. I do have to say that the Lexapro + counseling is what did the trick. She is a happy person right now and making friends.

Best wishes & stay postive.

 

[KAMKIM]

Oh, wow. I am at my computer crying as this wasn't even directed at me. I'm don't even have kids! Those are some powerful words. If you don't mind, I'm going to print this to keep when talking to parents about the challenges their children are facing when it comes to issues like this.

That was an amazing post. There isn't much said on the DIS that stays with me but I've repeated her words in my head so many times in the last 3 weeks I dont think I will ever forget them.

 

[tw1nsmom]

Just remember. Your child is still perfect just the way she is. Every child is born that way. Some just need more help in navigating through the world than others.

Others have mentioned these, but some things to look into beyond Aspergers:

NLD (Nonverbal Learning Disability) Very similar to Aspergers

APD (Auditory Processing Disorder) Can hear, but has trouble interpreting the sounds/meaning...can occur with other disorders.

Sensory Integration Disorder...Can also occur with other disorders.

Also, here's a link to your rights in New York state in regards to special education.

http://www.vesid.nysed.gov/specialed/publications/policy/parentguide.htm

Pay special attention to referrals, evaluations, and timelines. In NY a parental referral for evaluation holds the same weight as a teacher or doctor referral. You would absolutely have to put it in writing and send it by mail or in person (not email) to the head of special education in your district. You must write that you are requesting an evaluation via a parental referral. They then only have 60 days to complete the evaluation and hold a meeting to determine your DD's eligibility for services. I would still pursue the private eval. You can bring that with you to the meeting. However, they only have to consider your eval. They don't have to do what is recommended. I would start the process for a school evaluation as soon as possible. It may in fact take more than the 60 days, but they have to get written permission if they're going to go over. They may have to go out of district for the eval (pay for an outside consultant) because they may not have anyone who is officially qualified to do the testing. For instance, a neuro-psychologist is really the type of professional who should be doing an Aspergers/NLD eval.

Feel free to PM me if I can help you with anything to do with New York state special education.

 

[HugsForEeyore]

OP - wishing you the best in finding help for your DD. Like other posters said, many of us can see some of ourselves in how you describe your DD.

A few thoughts as I read your post:
[~ Go easy on your mother - I've said it before and I'll say it again...we cannot look at previous generations and their actions through "2009" eyes. I grew up in the 60's/70's....believe me when I tell you there was not a lot of early intervention stuff back then...even the 80's were kind of primitive in relation to ADD/ADHD/PDD/Aspergers type scenarios. I am sure she did the best she could with the resources at her disposal at the time.
~

This is what always stuns me too about how things have changed, but in a GOOD way!! . I grew up in the 70's/80's, and no one cared about the "kid with no friends". People didn't help kids like that, not even teachers (they didn't want to get involved and create extra work). If a kid had a hard time socially - well, the most any adult would do for them was take them aside and tell them "you need to try harder to make friends!" (like that changes anything). No one showed or helped the kid how to do anything different. And when the kid still had no friends, well, then it was the kid's own fault for not trying, and the kid deserved to be friendless and lonely, just the way it's going to be.

And sadly these things seem to stay with a kid - once branded "the kid with no friends", it stays and becomes hard to overcome later in the social heirarchy of school, especially when the cliques and queen bees start taking over.

But today, it seems adults are more aware how damaging it can be to be the "friendless kid", and you don't just leave it be. Just blows me away that nowadays teachers and adults actually care about social issues like making friends. What a 180 degree turnaround from my childhood experiences. OP - keep us updated!

 

[NotUrsula]

For those of you that have dealt with this was there an age that you told your kids their diagnoses? I know DD knows something is different - but I dont know that I want her to label herself. On the other hand, maybe this will help her realize there is nothing wrong with her - which sometimes now she does feel.

Any thoughts?

In our case, we told him immediately. DS was just turned 11 when he was diagnosed. At that age, it was impossible to pretend that the batteries of tests, questionnaires and physician interviews that he had undergone were anything other than psychological testing. There are people in my family with schizophrenia, and DS knows that -- we didn't want him jumping to the conclusion that these tests were about that.

With a younger child perhaps you could wait awhile, but I'm not sure it's all that necessary. Every Asperger's kid I know is grateful to have a name and an explanation for why they are so different -- it pleases their sense of order. I've never met one who was ashamed of the word. The blessing of this particular diagnosis is that is essentially new; there is no old, loaded, ugly word for this syndrome.

 

[Disney Doll]

OP - wishing you the best in finding help for your DD. Like other posters said, many of us can see some of ourselves in how you describe your DD.



This is what always stuns me too about how things have changed, but in a GOOD way!! . I grew up in the 70's/80's, and no one cared about the "kid with no friends". People didn't help kids like that, not even teachers (they didn't want to get involved and create extra work). If a kid had a hard time socially - well, the most any adult would do for them was take them aside and tell them "you need to try harder to make friends!" (like that changes anything). No one showed or helped the kid how to do anything different. And when the kid still had no friends, well, then it was the kid's own fault for not trying, and the kid deserved to be friendless and lonely, just the way it's going to be.

And sadly these things seem to stay with a kid - once brandless "the kid with no friends", it stays and becomes hard to overcome later in the social heirarchy of school, especially when the cliques and queen bees start taking over.

But today, it seems adults are more aware how damaging it can be to be the "friendless kid", and you don't just leave it be. Just blows me away that nowadays teachers and adults actually care about social issues like making friends. What a 180 degree turnaround from my childhood experiences. OP - keep us updated!

I agree. I think we are more aware of the difficulties kids face.

 

[KAMKIM]

Thanks everyone for the kind words. It helps knowing there are so many others going through this as well (not that I wish it on anyone, but YKWIM), my heart is just breaking for her, and maybe alittle for me too.

Unfortunately I had to cancel our pysch consult today since both the kiddos are home with the flu - couldn't ask anyone to watch them since obviously they are contagious at this point.

I was so lucky to get such a quick appointment I really hope now I dont have to wait months to be seen.

On one hand I'm glad I dont have to face this today after cleaning up puke all night and getting a flat on the way to work this morning, on the other hand I was looking forward to just dealing with this head on.

 

[KAMKIM]

My dd was relieved to know what was wrong with her. She thought she was going crazy. Then again she is very insightful.

This is a kid who demanded to know the answer to the Santa question in 2nd grade.

You dd is not doomed to be like this! Moving forward and getting help can be wonderful! You will be surprised. I do have to say that the Lexapro + counseling is what did the trick. She is a happy person right now and making friends.

Best wishes & stay postive.

Thank you I think my daughter will be better off knowing as well. We've never kept anything from her, so I dont think it would be wise to start now. Maybe if she understands what is going on, she wont feel like the outsider all the time.

 

[KAMKIM]

A few thoughts as I read your post:

~ Go easy on your DH - he's probably just needs a bit of time to "process" things.
~ Go easy on your mother - I've said it before and I'll say it again...we cannot look at previous generations and their actions through "2009" eyes. I grew up in the 60's/70's....believe me when I tell you there was not a lot of early intervention stuff back then...even the 80's were kind of primitive in relation to ADD/ADHD/PDD/Aspergers type scenarios. I am sure she did the best she could with the resources at her disposal at the time.
~ Go easy on yourself. As a religious person, I always say God has a plan for why things happen as they do. A non-religious person might say the universe unfolds as it should. Had you tried starting this at age 3, maybe she wouldn't have gotten the best treatment for her at the time, as you sid, because many behaviors may have been attributed to her age etc.
~ You are doing the perfect thing for her now, to help her
~ If she is diagnosed "on the spectrum" of something, it is not the end of the world. You will get her help, she will learn coping strategies and life strategies. It probably sounds silly and old-fashioned, but when something "unexpected" happens that I think will be terrible, I always try and think of people who have worse issues than me and say "See it could be worse. I could be like so-and-so who's kid is dying of cancer" or whatever. I know, I spent too much time with my mother who's favorite line when you tell her a problem is "You think you've got problems??? Let me tell you about ....." and she goes on to tell some story of someone she knew whose house was burning, they had to jump out the window, broke their leg when they hit the ground and couldn't get up fast enough and got run over by the firetruck!...true story...it was a co-worker! I have also generally found that when the "unexpected" happens, my vision of what will be is usually a lot worse than the reality of what will be.

Good luck with your DD...you sound like very loving, concerned parents and she sounds like a darling!!!!

I agree, I think this is hard for every generation to deal with but I have to remind myself, my mother parented much like everyone else did in the 80's.

I am grateful though, because I know things could be so much worse.

 

[clori]

You're doing great moving forward. Right now I'm frustrated with being unable to get an appt for dd. I posted on the family board about my dd9 having anxiety plus auditory and tactile sensory hypersentivity based on a school evaluation plus the belief she most likely has ocd. I did bring dd to an outside evaluation in June and just this week got the written report which is different from what I was told there. In the report dd has signs of anxiety, ocd and aspergers but further evaluation would be needed for full determination.

I didn't really like where I took dd but the location I thought I called went out of business. Now I'm trying to get dd into somewhere else and leave messages at various hospitals but no one returns my calls. The local counseling places I've called don't take kids, don't have openings, don't take my particular health insurance etc. In January I think I was in denial that dd had issues yet now I fully acknowledge that something is going on (anxiety and sensory for sure, the other two I still need more input) and want help it is hard to get.

 

[Luv2trav]

I am so greatful for finding this thread. I have a feeling I will be heading down this road soon. DS5 is currently in kindergarten and has an IEP for speech therapy (Since 3). He is having difficulties with following and understanding instructions. He excels in Math and Alphabet/Alphabet sounds but can't follow simple 2-3 step instructions because he "forgets" or loses attention. I too have known something is "off" or as I like to call them "Quirky". He is a lot like your daughter with the exception he is very social and plays well with others but is more of a copy cat play than it is with his own imagination. He too has some adversions to many foods, clothing and becomes obessed with objects. We seriously almost had to leave several dinners at WDW last year because the smells were making him gag. His current obession is his school back pack and his "need" for it to feel heavy on his back. We have to load it up with books to please him. He was in Occupational Therapy for his small motor skills such as pencil grip and cutting but has since tested out. His teachers and ST have informed me that if they do not see significant improvement in the next couple months they will test him for a learning disability. Which surprises me because he excels in so many specific areas but fails in others.

Again, I just wanted to thank you for starting this because it has really given me the boost and positive outlook that I needed today.

I guess one of the things I truly love about DS5 obsessions is he is obsessed with WDW just as much as I am...

 

[honugirl]

Whatever you do, DON'T GIVE UP! As an adult it's virtually impossible to get 1) diagnosed with any sort of sensory issues/aspergers/etc. 2) get any sort of help for it (this has nothing to do with my health insurance either, it has to do with the fact that there isn't any providers in my state that I can find that treat adults with those type of disorders).

I was just like your daughter, but I grew up in the 70's and 80's. Everyone just thought I was weird. I was the odd one with no friends. Now I'm in my 30's and visited the audiologist today at the local university speeach/hearing clinic because I've been saying for years that there is something wrong with my hearing in regards to processing. Turns out, I'm probably right. I have hyperacusis (extremely sensitive hearing) in my right ear and I cannot process words when there is background noise in both ears. The audiologist looked right at me and told me that if I was a child they could do something about it, but since I am an adult I basically have to learn to cope with it because there is virtually nothing they can do. Which means I'm stuck with the rest of my sensory issues too. Talk about a knife to the gut!

Never, never, never give up because that nagging feeling is probably correct.

 

[::Snow_White::]

I do have to say this sounds like me when I was a child. The doctor said I had severe seperation anxiety. I never talked to anybody, very shy, always got good grades, cried before school. I didn't fall asleep until almost 3 in the morning for about a year, and had all these irrational fears that I couldn't explain.

I'm 16 now, and I'm so much better! I guess I grew out of it around 13, and I haven't had a problem with it sense. I never did get any sort of treatment, medicine or therapy. I still have really bad anxiety, but it usually doesn't interfere with my life at this point. I still don't care for very many kids for my age, I'd rather hang out with adults or some of my friends, who are all very mature and have the same interests.

I hope everything turns out to be okay with your DD!