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#1 of 29 Old 03-07-2012, 07:15 AM - Thread Starter
 
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How did you react and what did you do when you first got your child's diagnosis?

 

When Your Kid Is First Diagnosed

 

 

 

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#2 of 29 Old 03-07-2012, 01:13 PM
 
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to be honest I knew there was something wrong with my daughter from day one I kept on telling her dr about my concerns and she just told me my daughter was fine. it was until we moved to Texas that her new dr had concerns and my daughter then was dx with Autism shortly after that I cried at first I think it was from relief that I was not crazy and that there actually was something wrong with her after that I just read everything I could on autism.


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#3 of 29 Old 03-07-2012, 04:58 PM - Thread Starter
 
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I HATE when professionals don't listen. There is something to Mother's Intuition that so few medical personnel really get. I knew Max was different, too. Well, I knew they were all different, they all had something going on. And when the youngest was born, I knew he was different from the first 2. ;) (He's my only non-spectrum kid.)

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to be honest I knew there was something wrong with my daughter from day one I kept on telling her dr about my concerns and she just told me my daughter was fine. it was until we moved to Texas that her new dr had concerns and my daughter then was dx with Autism shortly after that I cried at first I think it was from relief that I was not crazy and that there actually was something wrong with her after that I just read everything I could on autism.



 


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#4 of 29 Old 03-07-2012, 05:43 PM
 
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I was relieved, actually.  Relieved that his tantrums and acting out, and just sheer intensity wasn't because I was a horrible mother - it actually had a cause, a name.  I had been expecting an SPD dx, not an ASD dx, so there was some shock involved, but I think I adapted far quicker than anyone else did. 


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#5 of 29 Old 03-07-2012, 07:19 PM - Thread Starter
 
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Same here. I finally could tell people, "See? It's not parenting! It's not discipline! It's not anything else. It's NEUROLOGY." Ugh.
 

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I was relieved, actually.  Relieved that his tantrums and acting out, and just sheer intensity wasn't because I was a horrible mother - it actually had a cause, a name.  I had been expecting an SPD dx, not an ASD dx, so there was some shock involved, but I think I adapted far quicker than anyone else did. 



 


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#6 of 29 Old 03-07-2012, 09:40 PM
 
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When my daughter was diagnosed with brain cancer at 6 months old... I wanted to set her down and run away so fast that the doctor's words "she has a big tumor in her brain" wouldn't catch up to my ears. Then I think I walked around in a persistent state of dread and terror for about two years, until she was through treatment and had a couple of "all clear" MRI's under her belt.

 

When she was diagnosed with autism three and a half years later, I thought, "phew, that is such a better explanation for what we've been seeing in her than 'vague-leftover-after-effects-of-treatment-that-no-other-brain-tumor-patients-have-really-gotten'."

 

Her life was already radically changed; the autism label didn't change that, but it did make it easier for other people to understand her.

 


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#7 of 29 Old 03-08-2012, 12:02 PM
 
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I'd been struggling for a year with my physician, other supports in the community and doing my own research. I'd already figured out the SPD piece and wasn't surprised when we got the Autism Dx. It was a relief and helped me get my parents off my back as they were convinced we were just too lenient with her and coddled her, etc.


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#8 of 29 Old 03-08-2012, 02:11 PM
 
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I was also relieved.  Mostly to have some answers and to have a road map that would help me help DS.  I had already accepted something was "wrong" and I knew he wasn't "normal" and I think I did go through a grieving period sort of morning the loss of all the things I wanted for him.  So by the time we got an official dx I was just relieved to know what was (and wasn't) going on!

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#9 of 29 Old 03-08-2012, 02:31 PM
 
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I was relieved, too. But I was also angry. My two sons are adopted and have neurological issues that were caused, in part, by brain damage done to them by their bio parents. I know that is rarely the case, but that's what happened here. I even knew these diagnoses were coming. When we were first asked to take our sons through foster care (separately), from what the workers described it was clear they would have long-term issues. We had also pretty much diagnosed them ourselves before we went to the university hospital, so it wasn't real shocking. It felt good to know we had answers and now we could seek out targeted help.


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#10 of 29 Old 03-09-2012, 09:17 AM
 
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DS had a long diagnosis process. He was clearly different at 2, but we put it down to being gifted. (He is gifted and has an ASD.) He was having problems in first grade, so we took him for an evaluation in April. We got a diagnosis of mixed expressive receptive language disorder from the psychologist, but the speech therapist wanted to refer us for an ASD assessment then. We were pretty annoyed with the SLP. Our pediatrician and psychologist said "No" to the ASD diagnosis.  I was really worried about DS when I got the DX.   I dealt with the DX by reading everything I could lay my hands on about language disorders and about ASDs.  I spent too much time with Google Scholar, in addition to too much money on books from Amazon.  DS had a good 2nd grade year and a terrible 3rd grade year. 3rd grade was so bad that pulling into the school parking lot was giving me anxiety attacks.

 

After that terrible third grade year, we took him to a  different clinic to rule out ASD, but it got ruled in instead.  I really expected it to be ruled out, but it wasn't. I guess I was shocked. I would have been more shocked if I had not watched the ADOS being given, but in that setting it was pretty easy to see what the clinical people were seeing. I had to struggle with the DX quite a bit because if my son has a diagnosis of ASD, that means that other people in my family do, too. We have at least a three generation history of  ASD if the my son's DX is correct.

 

I had to argue with the DX a little because seriously, one of the people with ASD is my favorite uncle and there's nothing wrong with him. He's different, but we love him and he is a fully functioning member of society. His uncle was the same way.  I turned into a neurodiversity advocate overnight. My family has people with bipolar and people with ASD in it and a lot of crazy, genius people. We're different, but there's nothing wrong with us. Well, nothing more wrong with us than with anyone else. We just have different gifts and problems than other people. Anybody who doesn't like that can bite me.

 

I've pretty much accepted the DX of ASD now. My husband has not accepted it. He maintains that the mixed expressive receptive language disorder. That is the DX we have given the school as well. I sometimes say DS has "ASD or MERLD, we don't know."

 

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#11 of 29 Old 03-09-2012, 10:06 AM
 
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After that terrible third grade year, we took him to a  different clinic to rule out ASD, but it got ruled in instead.  I really expected it to be ruled out, but it wasn't. I guess I was shocked. I would have been more shocked if I had not watched the ADOS being given, but in that setting it was pretty easy to see what the clinical people were seeing. I had to struggle with the DX quite a bit because if my son has a diagnosis of ASD, that means that other people in my family do, too. We have at least a three generation history of  ASD if the my son's DX is correct.

 

 


This is where my husband and I were at, too.  We'd gone back and forth about what we had thought of an ASD diagnoses rather than what we had at the time (NVLD, OCD and tic disorder).  But watching the ADOS, it was very clear where the professionals were coming from.  The thing was, his responses to some of the questions, especially around feelings, were so similar to what I would have said either now or at his age, that I really had to come to grips with the concept that I had similar issues.  My father and both mine and one of DH's uncles would definitely fall under the same criteria as my son.  I had this mixture of relief that there was some sort of definitive name for this "family difference" (my father's term) I had experienced and grown up with, and annoyance that some things that I thought were different but not a big deal seemed to be made a big deal of. (Like I think it's fine my son has never felt lonely.  It doesn't hurt him any.  I think I felt lonely the first time in my 20's when my husband had a job away from home).

 


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#12 of 29 Old 03-09-2012, 10:13 AM
 
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RiverTam, I obviously don't know anything about your specific situation but I just wanted to point you to Dr. Stephen Camarata.  He is at Vanderbilt and specialized in helping people figure out what is a language disorder and what is ASD.  Kids with MERLD often appear to be on the spectrum because social skills and language are so intertwined. 

 

It is a really complex issue and sometimes you can't ever really figure it out but the reason I bring this up is because Dr. Camarata argues that ADOS is the worst test possible to look for ASD in a child who has language issues.  Mainly because the test automatically gives kids a very high score if their language skills are behind, thus lumping kids with language disorders onto the spectrum.  This is one of the reasons that the new DSM is pulling apart language and spectrum disorders.  Figuring out what is up with our DS has been a hard process for us as well and there is obviously nothing wrong with being on the spectrum but I do think accuracy in dx is important and your confusion and uncertainty suggest that maybe all is not right in your dx? 

 

I apologize if this is stepping out of bounds since I am clearly not a doctor!

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#13 of 29 Old 03-09-2012, 01:47 PM
 
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RiverTam, I obviously don't know anything about your specific situation but I just wanted to point you to Dr. Stephen Camarata.  He is at Vanderbilt and specialized in helping people figure out what is a language disorder and what is ASD.  Kids with MERLD often appear to be on the spectrum because social skills and language are so intertwined. 

 

It is a really complex issue and sometimes you can't ever really figure it out but the reason I bring this up is because Dr. Camarata argues that ADOS is the worst test possible to look for ASD in a child who has language issues.  Mainly because the test automatically gives kids a very high score if their language skills are behind, thus lumping kids with language disorders onto the spectrum.  This is one of the reasons that the new DSM is pulling apart language and spectrum disorders.  Figuring out what is up with our DS has been a hard process for us as well and there is obviously nothing wrong with being on the spectrum but I do think accuracy in dx is important and your confusion and uncertainty suggest that maybe all is not right in your dx? 

 

I apologize if this is stepping out of bounds since I am clearly not a doctor!



No, you're fine.  I'm familiar with Camarata. Before he hits junior high and high school, it would be a good idea to have him see Camarata or the Eides so that we can plan more.

 

One of the reasons I was glad I observed the ADOS was that it was clear that it just wasn't a language problem. When we did the ADI-R, I told them that he snaps his fingers. He does do that, but he also finger postures. Watching him talk to someone else made it clear that he is stimming with his fingers ALL THE TIME.  He meets the other criteria, too. He doesn't just have impaired  language. He has impaired social perception and some mild sensory issues.

 

At the same time, he is extremely affectionate and interested in people. He's socially awkward, but still social.

 

I've made my piece without having a precise label. It's not like he can take a pill and get all better if he has the correct DX. It also doesn't change the therapies that he needs since those are directed to his deficits and are not label specific.

 


 

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#14 of 29 Old 03-14-2012, 08:23 PM
 
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I was so relieved I was actually excited. It gave me so much insight into why DS was the way he was. And yeah, it meant it couldn't be blamed on me being a lousy mother!

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WHERE do people get off blaming parenting?! UGH.

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I was so relieved I was actually excited. It gave me so much insight into why DS was the way he was. And yeah, it meant it couldn't be blamed on me being a lousy mother!


 


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#16 of 29 Old 03-20-2012, 06:25 PM
 
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I've been thinking about this, because in my reaching out to other mothers of autistic children, both IRL and online, it seems a near universal experience to have been blamed for the child's symptoms. However, this does depend on the degree of severity of autism - the more high functioning, the more one hears blame.

I put the blame for this squarely in the shoulders of behavioralist parenting techniques, which are the norm in our culture. Behavioralist seeks to alter behaviour using reward and/ or punishment but this assumes the child can freely alter behaviour if given the right incentive (or, more commonly, the right threat). Thus in our culture people don't seem to even consider that behaviour can be a sign of disability.

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#17 of 29 Old 03-21-2012, 08:00 AM - Thread Starter
 
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I think you're spot on about this. And there's more ruminating in my head, but I can't quite articulate it.

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I've been thinking about this, because in my reaching out to other mothers of autistic children, both IRL and online, it seems a near universal experience to have been blamed for the child's symptoms. However, this does depend on the degree of severity of autism - the more high functioning, the more one hears blame.
I put the blame for this squarely in the shoulders of behavioralist parenting techniques, which are the norm in our culture. Behavioralist seeks to alter behaviour using reward and/ or punishment but this assumes the child can freely alter behaviour if given the right incentive (or, more commonly, the right threat). Thus in our culture people don't seem to even consider that behaviour can be a sign of disability.


 


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#18 of 29 Old 04-11-2012, 11:11 AM
 
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Scared, but glad to finally have a confirmation. We knew the DS#1 wasn't like other kids his age and hadn't ever really been. His drs had always waved it off as 'he will catch up'. When he got into school they started to test him. We also got a new (better) dr. Hoping to have a real game plan this summer. We are blessed in that it seems that with some extra time/tutoring his autism won't affect him that much.


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#19 of 29 Old 04-18-2012, 02:46 PM
 
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I've been in that position several times now. When we finally received a diagnosis for our almost-2-yr old daughter (now 15), it was a huge relief, because it meant that some very serious, very scary possibilities had been ruled out. On the other hand, it kept open the door to a very vague, fuzzy future: who knew what the future would hold????? So that part was still scary. But mostly, I was relieved.

 

When our son was born and diagnosed with Down syndrome, I really had that proverbial punched-in-the-stomach feeling. Everything got very still and quiet inside me, like I was slowing down. It took some days---a couple of weeks, actually---for the reality to sink in. As the brave words and positive outlooks that my dh and I had shared during our son's weeks in the hospital faded and were replaced with "what does this mean? what do we do now?", I grieved, big time. I grieved over the loss of the "normal" baby I thought I was having (he was born 2 1/2 years after our daughter), I grieved over the fact that he couldn't nurse well, and that it was the one "normal" thing I'd so wanted to share with him, I grieved over a big future of unknowns and fears. It was a very rough first year.

 

Conversely, when he was diagnosed with autism, as well, at 6 years of age, it was almost a relief. For the previous 3 years, I'd wondered why my guy was so different from all of the other kids I saw with Down syndrome (he was attending a school for kids with intellectual and developmental disabilities, many of whom had Down). I knew that something wasn't quite right....when his IEP team members ever-so-carefully danced around the possibility of him having autism, it was such a huge relief. As soon as we had the official diagnosis (which came as no surprise), we could start laying out a roadmap, and that felt really good. I think also the fact that I'd been down this road of diagnosis and discovery before gave me some hope.

 

Finally, our youngest son was diagnosed with Tourette syndrome just a couple of weeks ago. While his tics aren't terribly bothersome to him at this point, some of his struggles with behaviors, with impulsiveness, with anger, with attentiveness, have been massive. Just knowing that all of this could well be/most likely is a neurologic issue, as opposed to my Crap Parenting, is a huge, huge relief. We're just starting down the road with Micah; we haven't figured out a roadmap yet, but I've got a lot of hope.

 

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#20 of 29 Old 04-20-2012, 06:17 PM
 
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I guess I'm in the minority here. We don't have a diagnosis yet, but when we finally got to see a developmental ped and she validated all of my observations, I partly felt relief because finally someone wasn't looking at me like I was crazy, but I've also been feeling more impatient with my son than I ever have. He's 27 months, and we just saw this new doc earlier this week, and it could be coincidental, but my honest answer is that I'm feeling less connected right now and less tolerant of some very typical toddler stuff, eg whining, continuing to do something he's been asked not to, etc. The doc's reaction was not a surprise at all, and I do feel like we have something of a plan for moving forward, but for the moment anyway, that's how I'm feeling, and I'm not sure why. I hope it will pass?

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#21 of 29 Old 04-21-2012, 04:41 PM
 
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I guess I'm in the minority here. We don't have a diagnosis yet, but when we finally got to see a developmental ped and she validated all of my observations, I partly felt relief because finally someone wasn't looking at me like I was crazy, but I've also been feeling more impatient with my son than I ever have. He's 27 months, and we just saw this new doc earlier this week, and it could be coincidental, but my honest answer is that I'm feeling less connected right now and less tolerant of some very typical toddler stuff, eg whining, continuing to do something he's been asked not to, etc. The doc's reaction was not a surprise at all, and I do feel like we have something of a plan for moving forward, but for the moment anyway, that's how I'm feeling, and I'm not sure why. I hope it will pass?

 

I think the first reaction is usually "yay! a diagnosis/validation," then "oh, crap." Sometimes the latter has to do with actually having an identified problem to deal with, and sometimes there is a let-down due to a vague expectation that things would be "fixed" or "different" now.


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#22 of 29 Old 04-21-2012, 04:56 PM - Thread Starter
 
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I think the first reaction is usually "yay! a diagnosis/validation," then "oh, crap." Sometimes the latter has to do with actually having an identified problem to deal with, and sometimes there is a let-down due to a vague expectation that things would be "fixed" or "different" now.

 

I would agree with this.

Side note: Emmeline - what's your child's diagnosis?


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#23 of 29 Old 04-21-2012, 05:39 PM
 
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When my No. 1 (daughter) was diagnosed, I felt relief because I knew she wasn't developing like her peers.  At the age of 3, we were able to dive into different interventions. 

 

When my No 2 (son 18 mos younger) regressed and was later diagnosed, I was upset.  Even had the team who did the evaluations explain to me what he did to score.  His autism was completely different from No. 1. At the time, I was still new to autism so I was in denial which is why I probably felt devastated and a sense of hopelessness.

 

As the children grew and my husband and I adapted our life around their needs, we have been content and enjoyed every min of our life.

 

When my No. 3 (son 4yrs younger than No.2) regressed, I was upset and felt a bit of guilt for the regression.  I closely monitored his health (he had fever induced seizures with every fluctuation of his temp - never going above 100 degrees - a couple times a month) and his development.  I saw the loss the eye contact, not responding to name, loss of language and lack of engaged social interaction.  I knew.  I knew he was on the spectrum.  I was okay with the diagnosis because in the end I knew that it really meant nothing to me.  I accept him as he is and will do everything in my power to help in develop the necessary skills to reach his fullest potential, whatever that may be.

 

These are my children and I will love them for who they are, what they aspire to be and when they reach their fullest potential. 

 

Before I had children, I only had a couple simple desires in life - Happiness and Adventure.  I am happy to say that I have fun filled adventures DAILY and I am so grateful and happy that I have been given these 3 beautiful children.

 


 

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#24 of 29 Old 04-22-2012, 11:39 AM
 
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Emmeline II, thank you. You really hit the nail on the head for me, and because of your reassuring words our day today has been back to our usual laughing, connected ways.

 

I think after the ped visit I was subconsciously trying to coach him out of some of the "concerning" behaviors, which started a very negative cycle. This unintentional focus on deficits broke our connection, which increased those behaviors, which made me more worried, which further eroded the connection, etc. Your response helped me recognize all that and let go of it, and get back to doing what I usually do which is to build on strengths and keep connection at the center of everything.

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Same here. I finally could tell people, "See? It's not parenting! It's not discipline! It's not anything else. It's NEUROLOGY." Ugh.
 



 

 

I will be so glad when we get our diagnosis for the exact same reason! And it would be nice to be able to tell myself that as well... you know, stop beating myself up every time he has a meltdown and I feel like its my fault.


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We just recently received the official dx for my daughter who is 8. Aspergers.  My husband doesn't say much about it, and I don't KNOW much about it yet. It's really hard to read about, 1. because so much of it is in relation to boys and doesn't relate to her and 2. because it's so scary, not knowing what the future will be like. Will she get worse? better? always be like this?   There are very neurotypical things about her, and many people, upon first meeting her don't think there's anything wrong, but you spend a few hours with her and you start to wonder, what is different about this kid?  

 I'm a mom of 5, two older than her, and two younger and it's overwhelming and daunting and scary and there's a grief process that I'm going through, realizing that she's not "perfect" which is silly, I know, because who's perfect?   It's really hard reframing our thoughts and language. I never realized how hurtful it is to others who hear things like "not normal" and I'm reframing to say "neurotypical, or not neurotypical"  Hearing someone else try to mirror back to me what they think I just told them, and saying that my daughter isn't normal... it really hurts.   Also, the feedback from some of my family.... saying "I'm so sorry" to hear about the dx. What? Why are you SORRY? She's not dying... she just has a differently wired brain. It's not deformed or defunct... it's just different.  So... this is a process of learning and developing new sensitivities and new tools for helping her cope and learn.  But I am still dealing with feelings of anger, grief, inadequacy and frustration, as well as feeling like my patience is taxed to the max lately, with all I have to do.   It's hard too, as there is so much less information about girls with this syndrome.


Mom of 5 working full-time and waiting to go to nursing school! Whew! I need a nap! joy.gif

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#27 of 29 Old 04-30-2012, 02:09 PM - Thread Starter
 
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Yeah, I really dislike the lack of info on girls with it. And I get the "I'm so sorry" stuff, too. Wait. Hello?? My friend's little boy has cancer. THAT is something to be sorry for. My kid isn't on the brink of death every day of his life. My kid isn't on his way to Houston today for treatment. 

Look around, get connected with aspergers and autism pages on facebook and google+ and anywhere else you can.


 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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#28 of 29 Old 04-30-2012, 02:29 PM
 
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All of this - every single word!

 

I'm so dreading and looking forward to our formal diagnosis next week that I'm sick to my stomach. It will be a relief to have an actual diagnosis, and I can let go of all of the (seemingly) accusatory commentary that I'm overreacting and just wanting attention for him. Riiiiiiight.....because I want him bawling his eyes out at a hand dryer in a public bathroom. 

 

 

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Originally Posted by Thing1Thing2 View Post

 

 

I will be so glad when we get our diagnosis for the exact same reason! And it would be nice to be able to tell myself that as well... you know, stop beating myself up every time he has a meltdown and I feel like its my fault.

 

 

 

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Originally Posted by cristeen View Post

I was relieved, actually.  Relieved that his tantrums and acting out, and just sheer intensity wasn't because I was a horrible mother - it actually had a cause, a name.  I had been expecting an SPD dx, not an ASD dx, so there was some shock involved, but I think I adapted far quicker than anyone else did. 

 

 

 

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Originally Posted by HarperRose View Post

Yeah, I really dislike the lack of info on girls with it. And I get the "I'm so sorry" stuff, too. Wait. Hello?? My friend's little boy has cancer. THAT is something to be sorry for. My kid isn't on the brink of death every day of his life. My kid isn't on his way to Houston today for treatment. 

Look around, get connected with aspergers and autism pages on facebook and google+ and anywhere else you can.

 

 

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#29 of 29 Old 04-30-2012, 03:39 PM - Thread Starter
 
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Originally Posted by Christina1003 View Post

All of this - every single word!

 

I'm so dreading and looking forward to our formal diagnosis next week that I'm sick to my stomach. It will be a relief to have an actual diagnosis, and I can let go of all of the (seemingly) accusatory commentary that I'm overreacting and just wanting attention for him. Riiiiiiight.....because I want him bawling his eyes out at a hand dryer in a public bathroom. 



Oh, I hate those damn things. irked.gif They are so freaking LOUD!


 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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