Do I really want to know if there's an "acronym" diagnosis/label for her?

[SKL]

My daughter has all kinds of issues, and we're addressing them in all kinds of ways. I feel she is bright and has tons of potential, but needs to break down learning barriers or learn strategies to compensate for them. We are trying different stuff and not seeing a whole lot of obvious improvement - but that could just be my impatience for a quick fix.

 

I see folks posting about getting diagnoses for similar-sounding kids, and feeling relief about it. I have it on my to-do list for today to call Kaiser and push for an eval (or something!). I don't even know what that means, but I just feel like I'm grasping at straws. (The ped blew me off in June, but I think I should try again.) But I'm scared that they'll give my kid one or more "labels." Will that mean she is doomed? Will her private school find her less desireable as a student? Will I be pressured into dropping the therapies she's in and trying drugs? What if someone recommends grade retention with all those acronyms for ammunition?

 

Or am I neglecting my kid by not making conventional medical approaches available to her ASAP?

 

For those of you who have btdt, did you all feel better after the official, conventional evals and results, and did the process really help you? Or were you still just as confused as ever over how to help your child?

[RamonaQ]

Will that mean she is doomed?

No.

 

Will her private school find her less desireable as a student?

No. Around here private schools, even the most highly reputable, have kids with a wide diversity. Often the brightest kids are 2E.

 

Will I be pressured into dropping the therapies she's in and trying drugs?

All of that is in your control.

 

What if someone recommends grade retention with all those acronyms for ammunition?

Why would someone else suggest that? In the end, your child, your choice.

 

Or am I neglecting my kid by not making conventional medical approaches available to her ASAP?

No. I do not see it this way.

 

For those of you who have btdt, did you all feel better after the official, conventional evals and results, and did the process really help you?

A LOT. I finally had a direction, and understanding. Years later it has dramatically affected were my son is, and will continue to affect is future accommodations. He is able to be the good student he is because he can be accommodated now.

 

Or were you still just as confused as ever over how to help your child?

Well, parenting is confusing! But, no, I left with clear pictures how to help my kid. There are still puzzles, but the majority I understand.

[wapiti]

My daughter has all kinds of issues, and we're addressing them in all kinds of ways. I feel she is bright and has tons of potential, but needs to break down learning barriers or learn strategies to compensate for them. We are trying different stuff and not seeing a whole lot of obvious improvement - but that could just be my impatience for a quick fix.

 

 

If you might be looking at a 2E situation, it's difficult to sort through on your own. Even with a 6 y.o. (that's the right age?), things may change over the next couple years if she's a late bloomer. It's hard to develop strengths and support the weaknesses without more clarity. Knowledge is power, dear :)

 

(In my kids' cases, we didn't even end up with official diagnoses, but we did get a lot of nitty-gritty info about disparate strengths and weaknesses and alternative approaches, possible school accommodations, etc. Information overload.)

[PeterPan]

What is it with the disappearing sigs btw? Part of the privacy concerns? Anyways, your dd is 6? Depends on what the label is you're thinking. On the boards here they've been saying psychs are reluctant to give an official adhd diag before 7. Spectrum you see earlier. If you know a label is coming and need help but think the np is too soon, you could go a different direction like OT. They'd screen for the spectrum (actually the same screening the ped does, at least that's what I found). It's not like the psych has to be the first step. It can be a good first step, but it's not the only option. Just depends on what is most pressing. We pay for our evals, so I won't eval my ds until he's old enough to get an eval that sticks.

 

Yes, sooner or later you want the label. If I can say though, I really don't think it's so much about you. I talk with people in real life who say that and act like a label ruin's their dc's psyche or something. I have yet to figure that out, because *when the dc is SN* he/she ALREADY KNOWS she/he is different. They want to know why. How about a nickel for each SN dc who wonders why they don't have friends? Why doesn't that dc deserve a concrete, reasonable, intelligent answer to their question?

 

I don't think labels tear down. It becomes whatever you do with it. You want some wisdom in how you *handle* it and who you tell, yes. There's so much misinformation, old information, bias, prejudice, etc. it's ridiculous. And when I say ridiculous, I mean REALLY ridiculous. But to get that information and use it to make your lives better, use it to set your dc's mind at ease, use it to affirm your decisions about what's best for them, that's all good. Getting to the adult stage and wondering why you're different, that's what's not cool.

[Ottakee]

Knowing WHAT you are dealing with can help guide your treatments, therapies, programs, and even medical intervention if that is needed.

 

I am not afraid of the labels as they help guide me in helping my kids. Only you and the doctor need to know the label if one is given You don't have to share it with family/friends, etc, of you don't want to.

[Tokyomarie]

For those of you who have btdt, did you all feel better after the official, conventional evals and results, and did the process really help you? Or were you still just as confused as ever over how to help your child?

 

I so very much wish we had gone through with getting a complete evaluation when my son was early elementary age. He had been in speech therapy as a preschooler, and I had a pretty fair idea of what his "labels" would be were we to go through the evaluation process. However, without an evaluation we lacked access to resources that could have helped us to better navigate parenting and teaching with the difficulties my son presented. I strongly believe that our failure to get professional help in the early years actually negatively impacted my son's personality development.

 

As an 18yo, there are many ways in which he is doing very well. He is finding success in his current academics but developed some negative coping mechanisms that could have been nipped in the bud if we had gotten him properly identified. The biggest negative is that because he didn't have official labels, there wasn't a lot I could do to help him with the psycho-social aspects of adjusting to his learning challenges.

 

Waiting until he was 15yo to get a full evaluation was a huge mistake that I would do everything in my power to avoid if I could have a do-over on parenting this child. Ultimately, I think my son will do fine as an adult, but I allowed things to be many times more difficult for me and for him because I allowed the powers that be to keep me from pursuing the evaluation back when I first wanted to do so.

 

Even though we waited until ds was 15yo, the information we got from the evaluation and the doors that it opened for academic therapies has made the experience well worth the time and expense. Ds's adult life WILL be a lot better for having gone through the process.

[Crimson Wife]

Schools are not legally allowed to insist on pharmaceuticals for students, even if teachers and/or adminstrators may try pressuring you to medicate. It is your legal right to address the issues through other therapies, nutritional support, etc.

[NittanyJen]

My daughter has all kinds of issues, and we're addressing them in all kinds of ways. I feel she is bright and has tons of potential, but needs to break down learning barriers or learn strategies to compensate for them. We are trying different stuff and not seeing a whole lot of obvious improvement - but that could just be my impatience for a quick fix.

 

I see folks posting about getting diagnoses for similar-sounding kids, and feeling relief about it. I have it on my to-do list for today to call Kaiser and push for an eval (or something!). I don't even know what that means, but I just feel like I'm grasping at straws. (The ped blew me off in June, but I think I should try again.) But I'm scared that they'll give my kid one or more "labels." Will that mean she is doomed? Will her private school find her less desireable as a student? Will I be pressured into dropping the therapies she's in and trying drugs? What if someone recommends grade retention with all those acronyms for ammunition?

 

Or am I neglecting my kid by not making conventional medical approaches available to her ASAP?

 

For those of you who have btdt, did you all feel better after the official, conventional evals and results, and did the process really help you? Or were you still just as confused as ever over how to help your child?

 

Put me into the "so very relieved" category.

 

Of equal importance, from a very, very young age, put my son into the "very relieved" category.

 

By age 4 1/2--5, he grasped that his diagnosis meant that his differences were not his fault; that he was not sick or defective in some way (despite his dx ultimately having a genetic cause); that he would be able to succeed by working harder and that he had our belief in him and our full support. Mostly he was so happy to find out that his difficulties and differences were not something he was doing "wrong." For that realization for him alone, it was worth it.

 

We did not expect a "genetic diagnosis" when we went into it. Now we are really glad that we have it, because we have uncovered related medical issues related to his dx that we would never have known to watch for, whose symptoms are subtle, but whose implications are very, very important, potentially life-saving.

 

I would never want to alarm a parent into thinking that getting a learning disability is automatically a life or death matter, because that would be frankly, stupid and irresponsible; the overwhelming majority are not; my son just happened to win that lottery. He won the better lottery too-- he will be just fine and will live a normal, happy, healthy, productive life because of what we discovered. Because of that, I also never tell parents to blow off the notion of testing as mere curiousity, or to fear it because of stigma or what others will think. We were actually at first counseled to conceal our son's diagnosis even from family members (!!!) because of what people think about XXY's. Our tack has been the opposite-- to educate everyone about the enormous potential of individuals who happen to have extra X chromosomes, to dispel the myths, and to remove the shame by showing those around us that we see no reason to think it is shameful; we think it is normal.

 

I would advocate testing if you have concerns. Most testing will simply reveal a learning need, and hopefully, point out a direction for how to best handle it (and help you avoid useless strategies, saving you time and money in the long run). It can help you figure out the best way to help your child learn, how to help her to independently cope with any challenges she has. And for one of out every so many kids, testing will uncover a bigger need, including some need for additional medical management and preventative steps to be taken that will be truly life-altering.

[NittanyJen]

 

Yes, sooner or later you want the label. If I can say though, I really don't think it's so much about you. I talk with people in real life who say that and act like a label ruin's their dc's psyche or something. I have yet to figure that out, because *when the dc is SN* he/she ALREADY KNOWS she/he is different. They want to know why. How about a nickel for each SN dc who wonders why they don't have friends? Why doesn't that dc deserve a concrete, reasonable, intelligent answer to their question?

 

 

 

This this this this.

 

I could never wrap my head around the school administrators who used to sit in IEP meetings and tell me I was "cruel" for trying to have my son classified as special needs, because of the stigma it would create for him, "because all special needs kids are bullied in school."

 

That was the number one reason they would offer up for refusing him access to services. Seriously.

 

I can't even comment further on that line, because there are just too many things wrong with that entire line of reasoning . . .

 

However, as I stated in my prior post, my son was asking me by age 3 why he couldn't "run and 'gump' and p'ay' like the other kids in my class." I would never fear a diagnosis in terms of making a kid feel different; my son at 4 1/2 was so relieved to discover there was a reason for everything, and that it was not his fault.

 

He is now 9 and is very comfortable in his own skin, which is amazing to me, given that he is over 5' tall and barely cracks 70lb on the scale-- at a young 9 years old. He accepts who he is, he works hard to learn to do the things that are hard for him, because he knows that is is reality, and he enjoys the things that come easily to him as a 2E kiddo. Knowing his dx has made all the difference.

[Heathermomster]

 

I see folks posting about getting diagnoses for similar-sounding kids, and feeling relief about it. I have it on my to-do list for today to call Kaiser and push for an eval (or something!). I don't even know what that means, but I just feel like I'm grasping at straws. (The ped blew me off in June, but I think I should try again.) But I'm scared that they'll give my kid one or more "labels." Will that mean she is doomed? Will her private school find her less desireable as a student? Will I be pressured into dropping the therapies she's in and trying drugs? What if someone recommends grade retention with all those acronyms for ammunition?

 

Or am I neglecting my kid by not making conventional medical approaches available to her ASAP?

 

For those of you who have btdt, did you all feel better after the official, conventional evals and results, and did the process really help you? Or were you still just as confused as ever over how to help your child?

 

 

DS was diagnosed dyslexic at a Scottish Rite Leaning Center. With that info, he immediately went into Wilson tutoring. On his 8th b-day, he was tested by the np. The Wilson reading specialist ask us to get the testing and we did it. Simple process really. Never worried once about the label. Still don't actually. Knowing the scores has enabled us to research, talk to others, make changes, and advocate. As a mother, you need knowledge to advocate for your child. Believe me, no one will assist your child unless you ask for helps and push when necessary. It can be a lonely road...

 

DS attended a private school from pre-k to 6th grade. The school was limited with their helps. The teachers were poorly paid when compared to their public school peers. There was a profound lack of staff development....There were good things too, and I don't want to bash.

 

Be aware that private schools aren't generally prepared to deal with any off nominal student. Besides, the traditional classroom approach isn't always the best place for these kiddos, and that is ok.

[srs]

We're in the diagnosis process still, but I am finding relief. My daughter is finding relief, even at 5 years old, because she knows not all is normal and she wants to know why. And most importantly for me, she and I have our relationship back. I am no longer blaming her for issues beyond her control, and I am not panicked that I can't hide her differences from others any more. We are calm, rational, seeking help, and getting happier.

[Lecka]

I think acronyms would be ammunition AGAINST grade retention, not for it. Without a label, there is no reason to think that another year of the same instruction would not help. Maybe the student was not paying attention the first time, or something. With a label, it means, something different is needed. Maybe this is not always true, but thinking of my son, it absolutely is the case (dyslexia, poor handwriting).

 

For learning disabilities in general (I do not know about other things) it is not "the thing" to retain. It is the opposite of what is usually recommended. Working at the child's level in the most appropriate way is what I think is recommended.

 

So I have not gotten a diagnosis for my son, but if I did, I would fully expect it to be ammunition against grade retention. If it comes up again. I have worked with him at home and things are going pretty well right now at school, but if I had taken him when he WAS being recommended to be retained, I think it would have been a good thing to do. If I had a do-over I would have done it then. Now (at this precise moment) there is no compelling reason to take him, but the issues are not totally gone, either, and I think they may turn up again in a way that makes him need to get evaluated.

 

edit: Separately, maybe it is a sign that you are not seeing results with methods you are trying. Ideally you could get good advice about what to try with her. Maybe there is something you are missing.

 

I think it is too much to say it is neglectful not to get an evaluation. But, here are the negatives: 1) she might get depressed or frustrated with her lack of progress 2) she might start to give up 3) she might start to avoid the things that are hard for her 4) she might be having a harder time than you realize. Also, maybe time is being wasted. I think these are all real problems and deserve to be on the con side for a decision not to evaluate. There are consequences to inaction, also.

 

Overall I think that if the evaluation does not come out well, as a parent, you hold in your hands the decision to follow it or not. A worst case is to have a worthless evaluation, then, or have a poor quality evaluation that causes you to pursue the wrong things. But it does not have more power than that.

 

As far as having a belief about your child that she is awesome and created by God as He wants her to be, I don't think that is the kind of thing being addressed by an evaluation. It is just not in the same class. The evaluators are just people doing their job as best they can, they cannot know the future.

[geodob]

The label is rather an add on.

Where the real value of an evaluation, is the insight that it can provide, to understand your daughters ways of thinking and learning.

[SKL]

So, I got through to Kaiser and they will look at her, but they first want me AND her teacher to fill out some questionnaires. Now I'm getting cold feet again. Psychologically, having the teacher go up and down the "problem" checklist with my kid in mind scares me. This teacher's apparent bias already concerns me. I think I will wait until the 2nd semester and see if the other things we're doing, plus my kid's own adjustment / maturing process, have enough effect to get us through 1st grade. Maybe if we are still sort of borderline toward the end of the year, I'll ask Teacher to fill out the questionnaire then - when she can't do too much more damage to my kid in the classroom. It might be best if we address this over the summer anyway.

[Lecka]

I have had two good experiences with my son's IEP explaining behavior to his teacher. In one case his SLP went to bat for him with his classroom teacher -- it was much more effective coming from her than anything coming from me would have been.

 

 

 

I can see this line of thought, but I do know of some cases where results and an IEP made a positive difference in the classroom and improved a relationship with a classroom teacher. Or at least you have the IEP and can call them on it if they are not following it.

 

 

I would also maybe heed your instinct about the teacher. I regret not advocating for my son in Kindergarten. His teacher was assuming the worst about him and I could have given her information to understand him better. But I also kind-of dislike her and got bad reports from her (that were totally true, I must admit, so I am shooting the messenger).

[CarolineN]

How old is your child? When my oldest was 7 I was homeschooling him, so they didn't have a teacher from which to get information and were still able to make an accurate diagnosis. I think there are ways to get around involving the teacher if it makes you uncomfortable.

[Reya]

Dx doesn't mean drugs. It does mean that you can network and brainstorm with other people who face the same things you do.

 

Be VERY wary of getting a general or trendy diagnosis--those are more likely than others to be incorrect. If you get one and your daughter seems to fit into some of the peripheral issues but NOT the core issues with the Dx, the Dx is wrong. (For example, your outgoing child who readily meets new people and likes new situations and makes good eye contact but is still a poor judge of other people's reactions is NOT on the autistic spectrum.)