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Advantages of a diagnose or Should we see someone?


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#1 athomeontheprairie

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Posted 10 May 2017 - 04:57 PM

Several years ago, I posted over here about my dd, now 9. Here’s a super brief recap:

At a very young age, I started to expect something was off. At 3 I had gone to the doctor 3 times for behavioral help. They said it was age, it was normal, it was fine. It wasn’t fine. I started taking her to a local play therapist-this was provided to our rural community from a grant that has since run out and is no longer operational. It was helpful for both of us, but mostly I think, because it gave me a twenty-minute break.

2 years ago my oldest son was sent to a licensed child phycologist for an evaluation (he’s fine, just rather… intense, at the time.) For a long time, all 4 kids were in the room. Then my oldest took my younger daughter to the bathroom down the hall. The moment the door closed, the doctor asked if my dd had an evaluation. She thought she had Asperger’s. Someone (qualified) said outloud what I had been thinking for YEARS. Everything fits, including it being often overlooked in girls because it manifests differently in girls than boys AND how we (as a society) respond differently to boys v. girls (not trying to start a debate about this, it’s simply what I read when I went searching for information on why she hadn’t been diagnosed).

We did not get her evaluated. I don’t know if I see the value in it. But at that same time, that doesn’t mean there ISN’T value in it, just that I am unaware. If we were sending her to the ps, I would actively pursue this prior to enrollment (mostly because she would likely need some kind of an IEP). But she isn’t going into ps, she’s at home and always has been and unless something drastically changes in our local school ps is not an option.

What is the advantage of seeing someone? How does that change us? Her? Is it helpful, or would it just be a label that doesn’t help in anyway (I don’t mean that a label would harm her, but would it HELP, kwim?)

She is quirky. She has things that aren’t normal, but they are subtle. Does it matter? Or do we just keep on keeping on? Advice please from those of you that have btdt, please!



#2 OneStepAtATime

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Posted 10 May 2017 - 05:15 PM

If it would get her services and accommodations she might need later on it might be worth it. In High School might she need extra time or some other accommodation on a standardized test? Is there a possibility she would want to go to college and might need access to services? Is there Anything she struggles with right now that an evaluation would give you better answers and a clearer path for?
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#3 marbel

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Posted 10 May 2017 - 05:36 PM

I'm sure you will get different opinions on this, but my son was quite relieved to get some labels when he was evaluated at age 10.  He knew he was not like other kids; he thought he was stupid.  So, sometimes a label can help.  But he also received some therapies which helped too.  And as he grew, he became more self-aware because we had been talking about his complete lack of self-awareness and how it affected other people.   

 

OneStep is right about accommodations.  My kid had a second eval at age 17 which got him a few college accommodations to help him over some of his hurdles.  

 

I've never spent a minute regretting getting an evaluation and labels.  


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#4 OneStepAtATime

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Posted 10 May 2017 - 05:51 PM

I'm sure you will get different opinions on this, but my son was quite relieved to get some labels when he was evaluated at age 10.  He knew he was not like other kids; he thought he was stupid.  So, sometimes a label can help.  But he also received some therapies which helped too.  And as he grew, he became more self-aware because we had been talking about his complete lack of self-awareness and how it affected other people.   

 

OneStep is right about accommodations.  My kid had a second eval at age 17 which got him a few college accommodations to help him over some of his hurdles.  

 

I've never spent a minute regretting getting an evaluation and labels.  

I agree.  DD was so relieved to get a label for her struggles and a better understanding of her strengths AND her weaknesses.  It was a great moment for her after her first evaluation.  She was 11.


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#5 marbel

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Posted 10 May 2017 - 06:55 PM

Just some more thoughts... you say she is quirky.  Lots of kids are quirky.  But quirkiness can become an annoyance to people and can cause people to shy away from the quirky person.  An example: my kid is very interested in, and knows a lot about, military history.  He impressed a great-uncle who had been a pilot in a previous not-too-recent war with his knowledge of airplanes and such. But most people are not that interested.  My kid didn't notice peoples' eyes glazing over when they'd heard enough. One of the things that came out of his evaluation was a "diagnosis" (not quite the right word) of his tendency to fixate on topics, and his inability to pick up social cues to see when he should change the subject.  So, even though we (his parents) had been coaching him - a lot! - when the doctor discussed it with him - well, that's a whole different thing than mom and dad talking about it.  And of course the doctor gave us better methods for helping our kid see where his quirkiness was a hindrance to him.  

 

(And, as he has grown up, he's found places where that interest is welcome. And he can tell the difference.) 

 

So you don't want your kid's individual personality to get shut down.  But there's quirky, and then there's too quirky.  Maybe it's not a problem now.  Maybe it never will be.  But an evaluation may help tease that out.  

 

I'm really not trying to sell you on evaluations.  But, you asked. :-)  Obviously I am going by my own experience with my own kid, who may be way different from yours.


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#6 Crimson Wife

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Posted 10 May 2017 - 08:02 PM

I would do it to get the paper trail. What is a minor issue at 9 could be a big one at 19 but it's far easier to get accommodations and (if necessary) benefits if you've got that paper trail.

 

When we switched health insurance companies at the beginning of 2016, the new one questioned my daughter's HFA diagnosis and continued funding coverage for Applied Behavioral Analysis therapy. It was very beneficial to have that paper trail documenting that the autism symptoms had started back when her hearing was normal. It wasn't just me claiming that it had started when she was little- I had multiple outside professionals attesting to that fact.


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#7 Sweetpea3829

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Posted 10 May 2017 - 08:41 PM

First thing...

 

I first noticed something was "off" with my oldest child when she was 15 months old.  She just seemed so much more...I don't even know how to word it...limited? than other 15 month olds.  She could not problem solve, at all.  And of course, at 15 months old...when you mention something like that to a pediatrician, they WILL look at you as if you have four heads.  

 

But that pattern persisted and, long story longer, she has some LDs.  

 

I have some very specific reasons for pursuing official diagnoses for my DD.  For one, we live in a highly regulated state where she is required to maintain certain testing standards (which, for that matter, are HIGHER than they are for the PS kids).  I wanted documentation to protect our homeschool, should she not achieve required standards.  

 

Then, for DD herself, I wanted a documented history so that when the time comes for her to take a GED exam, or a college admissions exam, or whatever she may need as a young adult, there was an established history of her LDs.  From what I understand, it makes it easier to obtain accommodations.  

 

And finally, I wanted to know exactly what we were dealing with.  I wanted to know the specific nature of her LDs so that I, as her teacher, could best meet her needs.  

 

She had those assessments a few years ago and now, as she enters puberty, we're arranging to have a follow up done.  The "labels" only have to be a negative if we tell our kids they are, kwim?  


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#8 katilac

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Posted 12 May 2017 - 12:06 PM

Getting a diagnosis can take a very long time. Even if you don't plan on immediate interventions, it's better to have it than to be scrambling for it when a program or special opportunity comes her way. And I agree with those who say that kids are often relieved to get a dx. 

 

Wherever you get the dx, they can likely steer you towards helpful resources and information. 

 

 

She is quirky. She has things that aren’t normal, but they are subtle.  

 

With all kind intentions, I'll say that what is subtle to a parent is usually much more obvious to others, including her peer group.

 

Also, she's still a kid, at an age when kids tend to be all over the map with behavior and levels of maturity. Quirky behaviors may not stand out much now, but will be much more apparent when she's surrounded by tweens, which is going to happen before you know it. 

 

You say that the plan is to always homeschool her, but she's going to graduate from homeschool one day! And if she goes on to college, she's going to graduate from that someday as well. People on or near the spectrum often find it hard to find and keep jobs - not because they aren't skilled, but because they don't interview well or aren't able to work with others. There are other reasons, too, of course, but this one is often the first stumbling block. 

 

I would definitely pursue an evaluation. I think she's at a great age for it. 

 



#9 goldenecho

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Posted 16 May 2017 - 09:46 PM

We have a similar situation...sort of.  My son has always done some things that were a little off (repetitive things, or hugging too hard, being very literal).  In 1st or 2nd his teacher suggested we have him tested...but wouldn't say for what (said she wasn't qualified to diagnose anything).  I had felt like something was off and the discussion I had with her was sort of a relief...but when I bridged it with my husband he got very angry (and he does not get angry about stuff very often or easily) and was ADAMANTLY against it.  So I backed off on the idea.

 

Since then TWICE I've had random strangers who had family members with autism/aspergers ask if he was on the spectrum (they both were discrete...my son didn't hear).  And I've done some reading and some things really seem to fit.  But on the other hand, he is doing GREAT.   He gets straight As in school, he has no trouble making friends, and is really good about maintaining friendships.  So, there's nothing I see that he needs help with.

 

What marbel and OneStepAtATime said about their children being relieved to get a label made me think though.  That's just such a hard thing to know though because it could go the other way and he could resent the label.  He cares so much about fitting in. 

 

 

 



#10 OneStepAtATime

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Posted 17 May 2017 - 09:12 AM

We have a similar situation...sort of.  My son has always done some things that were a little off (repetitive things, or hugging too hard, being very literal).  In 1st or 2nd his teacher suggested we have him tested...but wouldn't say for what (said she wasn't qualified to diagnose anything).  I had felt like something was off and the discussion I had with her was sort of a relief...but when I bridged it with my husband he got very angry (and he does not get angry about stuff very often or easily) and was ADAMANTLY against it.  So I backed off on the idea.

 

Since then TWICE I've had random strangers who had family members with autism/aspergers ask if he was on the spectrum (they both were discrete...my son didn't hear).  And I've done some reading and some things really seem to fit.  But on the other hand, he is doing GREAT.   He gets straight As in school, he has no trouble making friends, and is really good about maintaining friendships.  So, there's nothing I see that he needs help with.

 

What marbel and OneStepAtATime said about their children being relieved to get a label made me think though.  That's just such a hard thing to know though because it could go the other way and he could resent the label.  He cares so much about fitting in. 

You are right, labels can be very tricky things.  I do think parents have to be careful about labels, especially in a school setting, since not all schools understand what the labels actually mean for helping a child.  Labels are useless if they don't net answers and a better path to follow.  Absolutely, in a public setting in particular, labels can have a negative impact.  It can also open doors that were closed before.  

 

Getting an evaluation wasn't done to get a label for my kids.  I didn't want a label.  I wanted answers.  So did my child.

 

My daughter was relieved because she had always had to work ten times harder than classmates to achieve the same things and yet she was bright.  She thought she was actually stupid and people hadn't realized it yet.  Her self-esteem was tanking rapidly.  She was starting to have suicidal ideations and she was also continuing to fall further behind her peers.  I got the evaluation because she had reached a point where I could no longer limp her along academically and emotionally she was no longer in good shape at all.  I needed answers and so did she.  She deserved those answers.  And the answers we got put her on a much healthier, more productive and successful path.  She finally understood that she IS bright, she IS capable, but she processes things differently.  She needs a different type of instruction and a different approach to learning.  That was HUGE for her.   It helped her redefine her struggles in a much healthier and more productive way.  

 

I regret deeply that even though there were so many red flags we ignored them year after year because of the fear of a label. We wasted years we could have been helping her in a way that actually WOULD have helped instead of the unfortunately useless "help" we were getting from the school.  Her struggles increased exponentially every year even as she was learning inefficient ways to cope and limp along.  Those inefficient coping mechanisms actually made it harder to help her when we did finally get an evaluation and it meant that compared to same age peers she was losing ground in exposure to material and concepts and vocabulary and social interaction and on and on and on.  We lost years we didn't have to.

 

But if she had been functioning fine in school and had had no emotional issues then it would not have been necessary to seek evaluations.  I didn't care about a label.  I cared about how to help my child because my child needed help and nothing I had tried had really truly helped her in a substantial way.

 

Our situation is different, though, in that my kids were in a brick and mortar setting.  If they had been homeschooling I would have had more time to get them help without the stress of a school setting.  However, in a homeschooling scenario I would probably not have realized just how much of a struggle DD was having.  I probably would not have had any clue it wasn't my teaching that was the issue.  I would probably have blamed myself or blamed my child for not trying hard enough.  I was so ignorant.  The only reason we did finally get answers was because the director of the school changed and that person recognized that DD needed more than the school could give her while at the same time someone else at the school had kids in a similar situation and were able to give us a referral.  My pediatrician was certainly no help.  Neither were the teachers.  Or my reading specialist mother who had taught reading for decades.  Or my DH who fought tooth and nail against evaluations for years (in hindsight probably partly because he had learning challenges in school and did not want to be blamed for any issues).  While I regret the years lost I am grateful that we were lucky enough to get that referral when we did.  


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#11 Crimson Wife

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Posted 17 May 2017 - 09:16 AM

 

What marbel and OneStepAtATime said about their children being relieved to get a label made me think though.  That's just such a hard thing to know though because it could go the other way and he could resent the label.  He cares so much about fitting in. 

 

Just because he has a label does not mean that you need to tell it to him at this point. You could frame the evaluation as wanting to know more about his strengths and weaknesses and then share as much or as little of the results as you feel would be beneficial.


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#12 Moved On

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Posted 17 May 2017 - 03:52 PM

deleted for privacy 

 


Edited by Moved On, 13 August 2017 - 09:44 PM.