daughter's psych eval finished yesterday

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for those of you who don't know, we have been attempting for quite awhile now to get daughter evaluated for AS. We've tried to get the school to evaluate her, but in the end we gave up & took her to a private eval- $2000 out the window. insurance won't pay.
at any rate, we took her to the eval yesterday. everything from our perspective seemed to be going fine- until we got the results...................although daughter displays AS symptoms, she does not have AS. although daughter displays anxiety, she does not have an anxiety disorder. The doc said that because daughter did not display rigidity nor anxiety when she was in the solo testing portion, she does not have AS or an anxiety disorder...........What the doc did say was that daughter has ADHD, and a large discrepancy between her verbal and written abilities. He also said that she has poor spatial awareness . He also said that she has very low muscle tone. And finally, Doc said that he feels that daughter's anxiety is a result of a learning disability. Doc said that further testing needs to be done. Doc also said that some of her behaviors may just be due to living in a house with aspies. he siad she's in desperate need of a social skills group.....
frankly, i'm at a loss
on one hand, i suppose that i should be happy that she doesn't have AS. on the other hand, i can't seem to reconcile with myself what to do about her immaturity, lack of fine motor control, gross motor difficulties, lack of orginazation, and anxiety.
I just can't seem to accept that these all are related to ADHD and/or LD.......
I also am having a difficult time realizing that the school will continue to do NOTHING. when daughter first got her dx of ADHD when she was in 3rd grade ( 2 years ago), we were told that the system "doesn't do IEPs for children with ADHD- you're lucky to have a 504 for her.".......

I can understand your distress, because it sounds like the evaluation has really raised more questions than it's answered. The issue with the school, though, is a whole different one. The school's statement that they don't do IEP's for kids with ADHD is basically illegal. The diagnosis does not determine whether or not an IEP is required; a child's need for services does. ADHD is generally considered "other health impairment," in the categories of needs, and many kids with ADHD do have IEP's (in other districts, I don't know your district). Your daughter's needs for OT support (for fine motor and sensory needs) and PT (for low muscle tone) should be supported by the school. Similarly, her need for organizational support should be provided by way of specialized instruction and possibly resource support. It sounds like you need an advocate or lawyer to help you to deal with the school district. Have you consulted with the Wrightslaw website? Wrightslaw They have tons of information about the legal rights of kids to a free appropriate public education. They also have a resource guide, which is a bit cumbersome to use, but may help you find some local resources.

Never believe a school district that's telling you things like "you're lucky to have ..." It's their way of trying to get you to back off from asking for what you know your child needs. Try to get input from someone who doesn't have an investment in withholding those services from your child!

I don't know what Aspie behaviors your doctor was saying that your daughter picked up from living with Aspies, but when my grandson, who lived with us, was diagnosed PDD-NOS, my daughter was wondering whether some of his behaviors might have been learned from my son who has Asperger's (the two boys are only seven years apart in age). She was told, very firmly, that it was not possible - that things like lack of eye contact and non-responsiveness when called, were not learned behavior, but were the result of his ASD.

I can appreciate your position after the evaluation and the previous poster is correct in talking about the school system. Research you rights and then push for them at all costs. ADHD ro whatever they choose to call it nowadays can have almost all of the sysmtoms of Aspergers even if those sysmptoms are not pronounced enough to warrant an AS diagnosis. Also there is no doubt that some behavior is 'learned' no matter who says differently.
Most of us on the spectrum understand and realize that the various diagnosis's are pretty generalized and actually don't mean a whole lot except to normal people. Most individuals have symptoms that range all over the board even though we have a specific label. Just keep researchina d fighting for you childs rights to a good education and most importantly good caring consideration when at school.

I don't want to place more doubt in your head but psychologists are all different. What one psych sees, another may not. It happens to me a lot, too. I disagree with fellow psych colleagues sometimes. Through working with kids, I have come across conflicting psych reports on the same kid. That is what makes it so frustrating for us. It is like this neverending rollercoaster ride of conflicting information and unanswered questions (I sound pessimistic, sorry). Also, there have been a few reports that I believe have been completely incorrect - actually very incorrect and from really good psychs. It does sound like they were very careful, though. I guess the reason why I am saying this is because one psych eval is not the end all be all of 100% correct information. Does the examiner have A LOT of experience with people on the spectrum? The information could be very correct but you are right in trying to reconcile all the information.


Now I feel all guilty saying that to you.

I honestly wonder if the psych who tested my child will come back and say something very similar. He did say autism spectrum disorder a few times but I couldn't figure out if he was talking about symptoms or an actual dx. Who knows.

we chose this specific doc because of his reputation for being sort of a last stop- what i mean is that many folks have gone to him with differential diagnoses & he has confirmed that the individual actually had an ASD..........we were confident that if anyone could dx her as having AS, it would be him. i'm feeling somewhat better today about the dx.....i can understand better why he wouldn't give her an AS dx. i am still struggling with his denial of an anxiety disorder, however. ...just because she didn't display anxious behaviors on the day of testing does not mean she's not an anxious girl- heck if that was the criteria for deciding whether or not someone had a disorder, we'd all be in trouble- i mean, just because someone isn't psychotic on a specific day, doesn't mean they aren't psychotic !...if someone who's bipolar has a good day, does that mean they aren't bipolar????
thank you all for your well-wishes and advice..........hubby has suggested that we get a lawyer. i think we'll wait until the eval papers come out & see whether or not the school actually plans to pay attention to the reccomendations this time. the doc said that he felt the school has been negligent with daughter & that they should really be doing whatever they can to help her...........time will tell, i guess.

Oh ster. This has been such a long road for you guys. I was going through my old PM's last night and reading through some of our conversations and I was going to write you to find out how the kids were. I guess now I know. I don't know. I think you need to go with your gut on this one. Maybe this doctor didn't get it right. His comment about "living in a house full of Aspies" made my jaw drop. I can tell you right now that my daughter lives in a house full of Aspies and she's completely NT. So that's a bunch of BS. Although, you already know that.

Big hugs, my friend. See how it plays out and then make your choices from there. PM me if you want to chat.

Sorry you spent all that money, and still don't have anything conclusive to take to the school to help your daughter with. That really sucks!

BTW my sons really enjoyed the process of being tested. It was in a quiet, pleasant room with one on one attention from a soft spoken, kind adult, so they were both relaxed, happy and more communicative than usual. That's why the psych. assessing them talked to the school, observed them at school etc. before making a dx. It is confusing and frustrating how arbitrary the diagnostic process seems to be!

thanks again.........i'm still at such a loss.........i have no hope that the teacher will be helpful nor understanding- i just emailed her about some issues my daughter's having in her class . listen to this:
ster- "I am disturbed by some incidents that daughter has reported about occuring at school.
1. daughter reports that after she had completed several pages of science which included drawings, you threw them out because she was supposed to do the papers as classwork..............As she was going to be out this week for several days, I honestly don't understand why you found this necessary."

teacher- "As far as science, it was written that she had 6 words to define and illustrate (from the pages she had to read; 1-3). Those were the directions. Anyone who didn't follow them had to do it over. Following directions is an important skill in my classroom that I try to instill in all my students."

ster: " 2. daughter said that she missed recess because she had to rewrite misspelled spelling words numerous times. Whereas I realize that spelling is important, I want you to consider a few facts:1. she has a difficult time writing as it is- have you ever seen her pencil grip ??? or the amount of time it takes her to write legibly ? 2. Have you stopped to look at any of her other papers with spelling mistakes ? I've noticed numerous papers where there are TONS of spelling mistakes- misspelled words that are misspelled 3 or 4 different ways....doesn't this point to a learning disability ? shouldn't this be looked into?"

teacher-"I wasn't aware that daughter missed some of her recess due to her spelling errors until she showed me her paper. It was free choice that day and some students work at their desk. I don't go around checking what they do during free choice. Also, I do not feel that it takes her a long time to write legibly. In addition, I do not feel that her spelling mistakes point to a learning disability, her mistakes are grade-level appropriate."




AAAAAAAAAAAAAAAAAAA....teacher is a moron!! !! !

Oy. She has one of THOSE teachers. That's awful. I get that the teacher wants to help her students understand the value of following directions. Maybe you should ask the teacher who's going to help instil daughters sense of pride, accomplishment, and self worth? I feel so angry when I come across people (in any profession) who feel that kids should fit inside a box. Whatever happened to making the box fit around the child's needs? No there's a concept to consider. Hugs to you, ster. Lots of them.

Ster, I found those comments from the teacher interesting. And they have me thinking that the problem may be more institutional than specific to your daughter. I'd hate to see any child subject to those standards and attitudes, really.

We loved our elementary school, start to finish, but can't say the same about middle school. And slowly we're coming to the realization that much of our complaint has less to do with IEP issues than policy in general. We can't fight that in an IEP; an IEP is highly focused on learning disability and what can be done, as was said in a recent meeting, "to make sure the child has access to the curriculum." The bureaucracy of it all frustrates me; kids are growing and changing and what they need today may not be what they need tomorrow. What you really need are teachers committed to teaching to the individual child. Period.

As an example, this week both my NT daughter (3rd grade) and my AS son (6th) have been sick. My NT daughter is back at school today without having done any of her homework for the week. Her teacher just smiled and said, "sick kids get a pass."

My son, however, had 4 large assignments due today and there is no such thing as "getting a pass" because he was sick. If he had shown up at school today and not turned in those assignments, he would not have been able to get full credit, despite the fact that reason he didn't complete them was because he had been sick all week. So he stays home because that is the only way he gets an extension.

Ridiculous, isn't it?

It's all clouded in some argument about preparing for high school which is preparing for college and so and so on but the end result is that 11 year olds are expected to live up to a standard that they are not developmentally ready for, when it comes to responsibility and organization. As was said in a book I just read, when exactly did middle schoolers start needing a day planner just to keep up?

The middle school has assembled some parent committees to look into certain issues, including homework policies, and I've joined on. THIS is where the change is going to come. Trying to find policies that make more sense for ALL the kids and contain within them the flexibility that kids this age need. I'm not the only parent scratching my head; there are parents of NT kids carrying all the same frustrations I have.

I have, btw, had some success talking with teachers one on one. My son's math teacher did a 180 after I sent her an email explaining what was upsetting me about many of her classroom policies. I think she just hadn't seen it that way.

With my son's language arts teacher, we've negotiated how many points he'll lose for failing to recopy certain parts of the homework. The core learning is in choosing the parts to go together, and we've agreed how he can show that. Then he makes a reasonable choice to go ahead and do the rewrite requested (which hurts his wrist) or accept the loss of points. Because the points are less than 10% of the total available, he usually chooses to lose them. I'm comfortable it's fair, he's comfortable, and so is she.

Which brings me to ask, have you had your daughter tested for a loose joints issue? This part of what my son has , and the reason he cannot write comfortably or well. It is a real medical issue, and you may be able to get accommodations separately for that.

None of this is an easy road to travel. I am sorry yours is filled with so many more questions and obstructions. Don't give up; your daughter needs you to continue to advocate for her.

She was dx adhd and has a 504 plan yet the teacher is not accommodating her when it comes to organization and helping her with following directions?

Wow!
What ignorance. You have ever reason to be frustrated and extremely mad.

Ster,

Has your daughter been assessed for dysgraphia? It sounds like she may have it, and if so, she may have a right to assistive technology accommodations. That would mean that the school would have to provide her with whatever she needs to make it possible for her to access the curriculum appropriately, which could mean use of an alphasmart or a laptop, so that she can "write" without suffering the level of hand fatigue you are describing. In order to do that, school might need to provide her with keyboarding instruction.

The teacher is not qualified to assess whether your daughter writes legibly or quickly enough to be considered typical for her age/grade. This is a highly specialized area. An OT evaluation would be a start, but OT's can't diagnose dysgraphia. Neuropsychologists experienced in this area are considered the primary diagnosticians of dysgraphia.

This teacher sounds like a very rigid individual who is not interested in teaching actual children - just in teaching her curriculum. There is a very real difference. It is sometimes useful to ask what her goal is, regarding your daughter. (I don't think she'll say her goal is to systematically destroy your daughter's entire sense of self-worth and value.) When she says whatever she says, ask whether she thinks her approach is working - because what you're seeing is something very different. You won't get her to change, but maybe you can get her to back off, at least as far as asserting her "expertise" on things in which she has no discernible knowledge at all.

You're dealing with a lot - hang in there!

thanks so much for the support everyone, it really means alot.............the doc that just did her eval reccomended that daughter have an OT eval & a speech/language eval- for both the possible dysgraphia, & hypotonia- he said that we should get the school to do it & if we disagree with their findings, then we can seek an outside eval that they pay for...........i think the doc thought i was making too much of the idea that the school system is atrocious to deal with.....wish i could forward the teacher's email to him.....have forwarded it to daughter's therapist & she was apalled. the therapist has said she could call & talk to the teacher too....

I would definitely take the therapist up on this offer! First, the therapist has more credibility than you. We parents are suspect because we are "coddling" and "making excuses" and all that rubbish. The therapist can speak as someone who is a professional and therefore "objective." Also, the therapist has more expertise in this particular area than the teacher does, but the teacher doesn't have to feel threatened by it - the therapist is supposed to have expertise! Also, the therapist can say stuff like, "I know how hard it can be when you have a child like this in your class, and sometimes you don't know whether the child is playing you or not, but ..." And, the therapist won't get as emotionally involved, so when the teacher says something provocative, the therapist is less likely to respond with the same kind of irritation that you can't avoid.

Definitely request the OT and speech & language evals, and request them immediately. Schools tend to drag their feet on these things, and if they take as long as they are legally permitted, it will be the end of the school year before it's done! Make sure the request is done in writing and you keep a copy for your records. Most school districts have an official "permission to evaluate" form they use - make sure they provide you with it asap. If you request the evaluation in writing, and they stall on providing you with the official form, you may have a case for having the time run from your original request even though it wasn't on their form. Check on the rules in your local jurisdiction.

Good luck!

I know that my school system considered ADHD to be on their IEP thing as part of the "other" category. We got to pick one to work with and I was told to choose between using the one for the Autism evaluation or the one that would have ADHD in it. Well, the autism one had a lot more things they evaluated on so I said the autism one. Speech, in and of itself, was listed. We had one for speech before we even thought of the AS diagnosis.

I requested evals be done in November- the school dragged their feet & then asked if they had to do them because we were getting our own private one..............i re-requested evals again
the teacher is still being impossible. daughter doesn't want to go to school anymore.........every day it's a headache or a stomachace- have told the teahcer, principal, & school nurse- no one responds........