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Son had evaluation this week but minimal feedback (update #284)


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#1 heartlikealion

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Posted 10 August 2016 - 10:47 AM

I don't know what I was expecting, really. Basically the psychologist said that they normally have another piece to the evaluation before they give results. That missing part is a form filled out by a classroom teacher. Um, yeah, I was a bit peeved that he was saying this to my face as if my feedback wasn't enough (homeschooled him K-2). But he insisted that the one on one time at home was not the same thing as a classroom full of other children and he needed to know how ds behaved in the classroom setting (I didn't say much, ds only participated minimally in co-op classes and I wasn't invited into the classrooms). He just started school and the dr said that even if I have the teacher fill out a form weeks from now, it wouldn't be worthwhile unless we were interested in medicating him. We are not.

 

So his evaluation results said that he did clinically meet criteria for ADD. I asked about auditory processing disorder because ds has issues remembering instructions, especially multi-step tasks and the dr said based on his scores in certain sections of the test he felt it was safe to outrule that. He said kids with that usually struggle with phonics blends and reading. Ds does not.

 

So now what? I know my kid may be ADD, but I don't know if that answers some of my nagging concerns about his behavior. Like, can ADD really explain away some of his other problems? Probably not. Dh and I filled out this lengthy form including behavior, etc. and the dr didn't touch on much at all. Basically seemed to think that behavior was linked to ADD?? I am still so confused. Ds seems to fit the description of spirited (strong willed) and explosive. Runs away, cries, berates himself at the drop of a hat lately. Struggles with certain things I don't think his peers normally struggle with (ie. mixing up left and right shoe even after corrected a million times). He's 8.

 

I'm seeing my own therapist later this week. I'll ask her for some feedback, but I don't know what else to do. He's already showing behavioral problems at school. I know there are going to be ups and downs but I don't know where to begin to address his issues with social interactions. He got in trouble and cried the first week. I don't think most kids his age are breaking into tears but I don't know.

 

I really don't know what I'm asking here, I guess maybe ideas. I'm so frustrated because we took him to a child development clinic. I thought I'd get more answers.


Edited by heartlikealion, 05 June 2017 - 01:43 PM.


#2 Arcadia

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Posted 10 August 2016 - 02:57 PM

The psychologist that did my younger's adhd evaluation said the third form is to be filled by any teacher/instructor of a group activity. So a swim coach, gym coach, music class teacher would work as well. Unfortunately the pyschologists can be rigid about wanting an opinion from someone other than parents.

Schools here will evaluate or ask the parents to go for evaluation if there are problems in class. The school may suggest a social skills class.

#3 Kat w

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Posted 10 August 2016 - 03:14 PM

I'd find a different doc.
Thays not good. You need one to work with you and offer support.

I have had 3 NP. The one now is through our university hospital.

Um....my guy recently diagnosed with sever APD ( I completely agree with this assessment )
Had not one problem. With phonics, phonograms, none if it. In fact, he can read several grade levels ahead.
He doesn't have a clue what he's read lol.

But, no trouble with phonics ever. Yet, severe APD.

That doc is not correct in that IMO and doesn't sound like yours either.

The things you describe , to me, sound like classic APD.

I'd find a new doc if it was me.
I have, and each one got better. LOVE who we have now :)

Edited by Kat w, 10 August 2016 - 03:16 PM.


#4 Heathermomster

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Posted 10 August 2016 - 04:14 PM

What testing did he actually perform?



#5 heartlikealion

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Posted 10 August 2016 - 04:17 PM

Ugggh this is so frustrating. But thank you for the feedback. He was supposed to see this other doctor. I was really pumped about the other one... but they were sooo booked they suggested I move to this other place. I researched the dr (the one we saw) and seemed happy with his profile and figured he'd be fine. But the other guy was both a neurologist and psychologist or something like that.

 

I had to pay out of pocket for this visit and didn't have dh's support. It's not paid off yet, actually. So the idea of going to another out of pocket dr is scary. But we will switch insurances soon so maybe I can do it then when the fees should be better.



#6 heartlikealion

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Posted 10 August 2016 - 04:23 PM

He had no one he regularly saw that could provide feedback. Co-op only met like twice a month and sometimes we didn't even make it due to weather, etc. He was in martial arts, but that was years ago and it was taught by a teenager who may or may no longer be there/remember ds. I observed his behavior during part of Vacation Bible School and he definitely stuck out like a sore thumb (not following directions/not listening to directions).

 

 

What testing did he actually perform?

 

I don't know. I'm quite annoyed. I told them on the phone and on the form that I was concerned about more than ADHD/ADD but I feel like because that is what I discussed with our regular practitioner, that was the focus. He talked a little bit about test results but didn't say the names of the tests. At least one was done on the computer. One was a piece of paper where my son had had to draw some stuff. I have no idea what exactly was done. They are going to mail me some stuff, I think copies of results?? Will that be helpful at all?

 

 



#7 Arcadia

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Posted 10 August 2016 - 06:20 PM

The computer test might be TOVA
http://www.tovatest.com

We get test results and a report from the psych with his summary and conclusion. So he basically said there was no evidence to suspect adhd or autism since we were screening for both. Our insurance pick up part of the bill and our HSA pick up the rest so zero cash for us.

ETA:
For what its worth, my younger does not pay attention if the person talking is not in his line of sight. However if we tell him to pay attention at all times to the camp instructor at drop off time, he is able to even if the instructor move out of his line of sight. He just need to be explicitly told to do so.

Edited by Arcadia, 10 August 2016 - 06:23 PM.

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#8 Heathermomster

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Posted 10 August 2016 - 07:33 PM

Computer test...I was thinking NEPSY.

Don't be upset that the tester wanted input from multiple people. Two to three others plus myself and DH each filled out a Connors Assessment form. I think that is the name. Diagnosis is serious, and you don't want your child with an incorrect diagnosis.

Edited by Heathermomster, 14 August 2016 - 08:16 PM.

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#9 Storygirl

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Posted 10 August 2016 - 07:53 PM

Can you call the office and ask when you might receive the written report? There should be one, but it may take awhile for you to get it. I think we waited almost two months for a written report after one of our kids' evaluations, but it was only about two weeks for the other one, so it really can vary. The report should name all of the tests given, the scores, and the diagnosis or reason they couldn't diagnose.

 

We've used two different neuropschologists, and their reports were very different from one another, so I can't promise you that yours will contain everything you need to know. But it should give you more details.

 

And yes, ADHD could account for the difficulties that you mention. Is there another condition that you were specifically concerned about? If so, and you didn't talk to the psych about it, you could see if you could have a phone consult about it. Our neuropsychs both offered to answer follow up questions if we had them.


Edited by Storygirl, 10 August 2016 - 07:54 PM.

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#10 heartlikealion

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Posted 10 August 2016 - 10:29 PM

Well he had me write my address on an envelope and said he was going to be mailing me stuff.  I suspect soon because but I dunno?

 

He was friendly, but I just didn't know what all the test covered and some of his feedback was directly based on some questions I answered "circle 0, 1, 2, or 3." Then it forms a graph on the other side and he holds it up and says "if your child is above this line then this issue is severe..." or something like that. I thought oh great so you're just telling me back what I told you lol. I didn't mark ds as hyperactive because he has mellowed out a lot but then I started thinking about the last few times I took him somewhere where he was instructed to sit still and he couldn't cooperate! So I don't know if he's considered hyper or not. Like a few weeks ago I brought him along to a meeting I had and said you can stay in this room next to us and read your book (there was a large window between the areas). Instead of reading he kept looking around the room, looked at us through the window, came to the door and asked where the bathroom was... just would not.sit.still. Yet other times he's perfectly fine, like at church for the past year+ he's been great. He follows along with the readings, etc.

 

Yeah, it would be helpful to have more outsider input. I just don't have that now.

 

I don't know if I can put my finger on another condition exactly, but almost like he has executive functioning issues?? I really am not sure.

 

Clothing has always been a struggle. I always thought to myself, when my child is X years old they can get ready themselves. We're still helping him get dressed sometimes! Like he doesn't wear a belt often, so maybe that is why, but if we handed him his belt I don't know that he could put it on. Dh helped him get it on and I helped him get it off. More recently he's been way better with socks, but he'd put them on with the heel part on the top sometimes and not "get it" when we'd say, "that's wrong. You need to slide it around.." and then get frustrated and take it off and start over and do it wrong again. Shoes are such a nightmare that we keep buying the ones that don't require lacing for the most part. And then he'll still put them on the wrong feet, except not so much lately. I think the last few times he put this pair on he's done it correctly. It's really hard for him to do buttons. Whether it's on the pants or buttons down a shirt.

 

I told dh that I'm concerned they missed something, but he does not want to hear it. He didn't even want ds going to the first test.


Edited by heartlikealion, 10 August 2016 - 10:30 PM.


#11 Arcadia

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Posted 10 August 2016 - 10:43 PM

For the meeting you went to a few weeks ago, was your son familiar with the place? DS11 would have found a comfy chair to plop and read his book or to draw. DS10 would look around and assess the place and figure out every nook and corner if it is an unfamiliar place. DS11 is "restrained" in his curiosity while DS10 is obvious in his curiosity and so can look like a site inspector.

As for things like belt, shoe laces, tying a tie, buttoning jackets, it took lots of practice for both my boys to get it. Ironically socks was easy because they are sensory to socks so they would take off and wear again until they are pleased since they were toddlers.

We have a pair of moccasins per kid so that we can dash out of the house when we happen to oversleep. Even if our kids happen to wear their moccasins on the wrong feet, it is easy to swap in the car. BTDT.

Edited by Arcadia, 10 August 2016 - 10:46 PM.

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#12 heartlikealion

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Posted 10 August 2016 - 10:51 PM

For the meeting you went to a few weeks ago, was your son familiar with the place? DS11 would have found a comfy chair to plop and read his book or to draw. DS10 would look around and assess the place and figure out every nook and corner if it is an unfamiliar place. DS11 is "restrained" in his curiosity while DS10 is obvious in his curiosity and so can look like a site inspector.

As for things like belt, shoe laces, tying a tie, buttoning jackets, it took lots of practice for voth my boys to get it. Ironically socks was easy because they are sensory to socks so they would take off and wear again until they are please since they were toddlers.

We have a pair of moccasins per kid so that we can dash out of the house when we happen to oversleep. Even if our kids happen to wear their moccasins on the wrong feet, it is easy to swap in the car. BTDT.

 

The meeting a few weeks ago was a new place to him.

 

In the past I got stuck taking him to a few OBGYN appointments. He wouldn't just sit down and do his stuff (coloring book, Kindle Fire) and kept chatting to the receptionist. Then another time I took him into the actual room with me just for the part where the dr and I spoke and told him before she came in the room to just please be quiet so I could talk to the dr and I let him use the Kindle Fire (figuring at the time he would just play Minecraft and leave me alone for a few minutes). But instead, he insisted on hogging some of the dr's time by asking her if her kids had this or that app and trying to chat with her. I was so irritated. I guess he was seven at the time, depending on how far into the pregnancy it was.

 

Maybe he just needs more practice with buttons. Just today I asked him to give his sister a banana and he brought it to me and said he didn't know how to open it. I was sure he'd opened bananas before but now I'm wondering if we've always done it. I actually had trouble with it myself lol I know they can be a pain sometimes. I think he's done it before but just said that because it looked like it was going to be difficult?? Or did he actually forget what to do?? I don't know.



#13 Arcadia

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Posted 10 August 2016 - 11:11 PM

Bananas - most times my boys couldn't open bananas. I told them to use the steak knife to cut the banana into two if no one is free to help and they are having a hard time.

Chatting - maybe he just like to talk. My DS10 sometimes get very chatty when we are on break from outside classes. It is like he has a chatting in person quota to fill. My hubby took leave today to chauffeur us around and DS10 talked from sunrise to sundown :lol: Both of mine are supposedly introverts but behave like social butterflies often.
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#14 Tokyomarie

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Posted 10 August 2016 - 11:17 PM

I suggest hanging on until you get the report in the mail. Once you've received the report, you should be able to see exactly which tests were done and find out whether there are any specific recommendations. Once you've had a chance to digest it, if you have specific questions you can see if the evaluator will schedule another session to talk with you. Often you have to pay the hourly rate for an additional session, but it may be worth it.

‚ÄčAs for the request to have someone else fill out the behavior rating scale, that is standard practice. The diagnosis of ADHD requires evidence that the child has a difficult time with attention and behavior in multiple settings and with different people. This is because sometimes challenging behaviors that show up only in one setting are due to causes other than ADHD. A child with ADHD will definitely evidence difficulty in all settings, no matter who is in charge.


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#15 heartlikealion

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Posted 10 August 2016 - 11:38 PM

Bananas - most times my boys couldn't open bananas. I told them to use the steak knife to cut the banana into two if no one is free to help and they are having a hard time.

Chatting - maybe he just like to talk. My DS10 sometimes get very chatty when we are on break from outside classes. It is like he has a chatting in person quota to fill. My hubby took leave today to chauffeur us around and DS10 talked from sunrise to sundown :lol: Both of mine are supposedly introverts but behave like social butterflies often.

 

Do your boys have ADHD/ADD?
 



#16 OhElizabeth

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Posted 10 August 2016 - 11:52 PM

It sounds like it might be helpful to you to read more about ADHD while you wait for your full report.  Executive Function issues are part of the ADHD.  It's also common to have some social problems (not noticing social cues, etc.) as part of it.  They'll even diagnose an additional social delay on top of the ADHD if they see it.  

 

Sometimes it's not very satisfying to get what seems like a simple answer.  There will probably be more in the report, but in the meantime you can start learning more about what an ADHD diagnosis means.  I agree that most of the things you're describing are explained by it.  I agree it seems a little odd to assume there will be phonological problems in APD.  That's easily resolved with an APD screening.  Our university will run it for $35. If you want it done, you could see if you can get it done somewhere affordably.  I wouldn't put money into a 2nd opinion right now on the psych.  See what the report says.  It's a little disappointing that you didn't have some other people to give the behavioral questionaires to, because they could have been helpful.  However sometimes the most pesky behaviors don't show up in short sessions or settings that are highly preferred.  If you want a 2nd opinion, you'll want to arrange for him to have significant chunks of time with someone else in a non-preferred setting that results in the behaviors you're concerned about, so that person can fill out the forms. 

 

I don't think the banana thing is an issue, but certainly if you're having issues with fine motor, gross motor, adaptive living skills (ability to dress, etc.), and he's falling behind there, it would be good to get an eval for that.  An OT eval is what you're wanting there.  It *sounds* like you're also saying he has sensory issues.  I don't know what made me think that.  If he is, definitely get that OT eval.  But for the adaptive living, yes, absolutely you're right to be concerned about that!  An OT eval is how you'd address that, and they tend to be much less than a psych.  :)

 

Sometimes evals are an unfolding process.  Our first evals with ds we sort of messed up, giving behavioral forms to people who weren't seeing the behaviors, etc.  It took several evals with my ds to get it all worked out.  It could be more will become obvious with time.  Really though, I'd hope for the best.  Let's just hope that these initial evals really captured what's going on and that they fully explain it.  It won't seem satisfying, but ADHD is such a broad umbrella that it actually could.

 

And fwiw, people don't meet my kids and think ADHD, even though both have labels.  It's really a misnomer to think they're going to be this stereotypical picture of it.  Sometimes their bodies are under control and it's what is in their HEADS that is so astonishing.

 

What did you want to change as a result of the evals?  Were you able to ask the psych any questions that yielded helpful, actionable answers?


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#17 heartlikealion

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Posted 11 August 2016 - 12:31 AM

Mostly I wanted to know what I was dealing with because I've struggled to homeschool him for years and then we go somewhere and I'm wondering why he can't do things like kids his age. Just really for my own curiosity/understanding and then to see for learning purposes what best helps students or what is/isn't in his control. That type of thing. He's doing private school this year, hopefully the full year. If things go awry we can pull him back out. I know his behavior may not all be related to ADHD but I consider him a difficult child, yet bright and a joy to do school with when he cooperates.

 

I haven't made my way through the book I'm listening to on ADD/ADHD, but I think it applies to both ds and dh. Dh has no interest in getting himself tested, though. My family is driving me bonkers and sometimes I wonder what the deal is. I'm not saying I'm perfect to live with, but I'm super irritable all the time having to repeat things to dh and ds constantly.



#18 Arcadia

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Posted 11 August 2016 - 01:21 AM

Do your boys have ADHD/ADD?

Nope. But our experience is that ADHD and autism is the first line items to be evaluated for quirky before they find other possibilities. Comically all their teachers think they are quirky but why leaves them puzzled (and to an extent entertained).

Mostly I wanted to know what I was dealing with because I've struggled to homeschool him for years and then we go somewhere and I'm wondering why he can't do things like kids his age.
... I'm not saying I'm perfect to live with, but I'm super irritable all the time having to repeat things to dh and ds constantly.

My DS11 has 5 public school teachers (K-4th), 2 German school teachers and a music teacher that has at least a year with him. So each teacher's feedback adds a bit to the puzzle. I empathize with your frustration but humans are unfortunately not so clear cut. If your husband is similar in some ways to your son and he is wiling to tell how he cope, it would be helpful to you as a starting point to tweak how you cope. My husband can be really obstinate sometimes but we have been arguing for 23 years so no hard feelings :)

Written lists are your friend for people who don't seem to remember verbal instructions for whatever reasons. My DS10 only use his memory for what he like, definitely a maturity issue.

Our evaluation fee includes another meeting to discuss the report. We did over the phone so we didn't do another meet in person.

ETA:
My friend's son was evaluated for ADHD because his private school asked for it. After the first session, the psych said it was inconclusive and did a second session of evaluation. The conclusion was that it was not ADHD causing his distracted and disruptive behavior. My friend gave up and transfer him to a "rigid" school and the behavior went away. My friend was so thankful that she doesn't get complains anymore at pickup. Her child would push buttons on any person including strangers unless the person is extremely no nonsense.

Edited by Arcadia, 11 August 2016 - 08:42 AM.

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#19 Kat w

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Posted 11 August 2016 - 02:35 AM

Nm

Edited by Kat w, 11 August 2016 - 10:01 AM.


#20 Kat w

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Posted 11 August 2016 - 02:40 AM

Why won't my messages or notifications load on here? Does anyone know?

#21 OhElizabeth

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Posted 11 August 2016 - 07:30 AM

Mostly I wanted to know what I was dealing with because I've struggled to homeschool him for years and then we go somewhere and I'm wondering why he can't do things like kids his age. Just really for my own curiosity/understanding and then to see for learning purposes what best helps students or what is/isn't in his control. That type of thing. He's doing private school this year, hopefully the full year. If things go awry we can pull him back out. I know his behavior may not all be related to ADHD but I consider him a difficult child, yet bright and a joy to do school with when he cooperates.

 

I haven't made my way through the book I'm listening to on ADD/ADHD, but I think it applies to both ds and dh. Dh has no interest in getting himself tested, though. My family is driving me bonkers and sometimes I wonder what the deal is. I'm not saying I'm perfect to live with, but I'm super irritable all the time having to repeat things to dh and ds constantly.

 

I think you can actually address the dynamic of you repeating things.  That's something that actually has tools, strategies, solutions.  For instance, if you get the RDI manual Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger‚Ķ you'll find that one of the VERY FIRST exercises they have you do is getting contact and not talking to someone who isn't actually listening.  It takes some effort!  Sometimes we, without realizing it, are talking to people who aren't really listening, for whatever reason.  Maybe *they* need to improve their listening skills, absolutely.  If you get some Social Thinking materials, they'll talk about the concept of Whole Body Listening, where we show with our eyes, with our bodies, etc. that we're listening.  But as parents we don't have to be that overt right away.  We can do some of the RDI strategies and sort of subtly start to get that connection.

 

Many kids with ADHD will have social issues.  In the workshops, they'll call it a "social learning disability" because they want to show that it can occur under a VARIETY of labels, not just one.  Let's be frank, what do you really think is going on?  You think this is actually pushing over to ASD?  You can go through the DSM criteria and see.  When our first eval came back saying ADHD inattentive (which in our case was clearly stupid), people who knew him were FLABBERGASTED.  You could go through the DSM criteria and see that he fit.  It doesn't HAVE to be mysterious.  If you think he does and you think it got missed, don't pay, call the guy back, say hey I think we missed some things, did you run (and list some autism diagnosis tools).  You're with him and you know what you're seeing.

 

But then if you go ok not quite to ASD, then you still have these in-between add-ons they do like anxiety, ODD, social delay, etc.  I'm not meaning to make it sound like less.  I'm just saying if you want to ask what MORE they could diagnose, they could take the ADHD and start adding those on.  Did they run a BASC?  A Conners?  There are tools for these, and again that's something you can ask.  Call the psych back and say hey did we run tools for anxiety, for adaptive living, for behavior?  Ask him what tools he ran.  Me, when I fill those questionnaires out, I scan them with TurboScan (app on phone) and save.  That way I have them on file as snapshots for the next eval, the next practitioner.  

 

I think it's totally fair game to ask what got run, whether enough tools got run, why he didn't help you find someone who has enough time with him to fill out those forms, why he didn't COOL HIS JETS and say ok, if he's going to school, then let's hold this process, have the teacher fill out those forms after 6 weeks in, then finish the evals.  You could talk with him about that.

 

Between ADHD and ASD there's a LOT of behavior that can happen, and that behavior is NOT exclusive to one label or another.  So particular elements of behaviors that occur under ASD or ODD or NVLD could occur with a dc who has only (I say only, sorry) an ADHD label.  I mean exclusively.  And that's really frustrating!  To people in the system who have to TREAT the behaviors and work with the behaviors, it's frustrating!  That's why they don't look at the label anymore.  The label just gets you access to services.  It's a starting point.  The reality is you're going to have to get the behaviors identified and get the interventions, irrespective of label.  So the main thing is whether the psych got enough info on the behaviors you're seeing that he was able to diagnose and put them into a report.  

 

For instance, anxiety.  If he's having symptoms of anxiety, the psych may slide that into the report.  Or depression or just overall behavior.  Then you can take that info to your school and say he I want to go through the IEP process.  Check your state law to see how it works, but what *I* would do is make your request directly to the public school, not the private.  Trick is that his private school may or may not be in district of residence.  They'll probably put him in the molasses approach, which is watch for a grading period, then begin the IEP process.  If they don't see the behaviors in school, they won't care and won't do anything.  If they see the behaviors, then the IEP process is how they identify them and make a plan.  Could be things they do in the classroom or could even be pullouts to work on self-regulation, social skills, etc.  They can run that OT eval we were talking about.  When you say you think he's not doing things other kids his age are, that matters!  That requires an OT eval to sort out, and your ps will do that for you.  

 

So that's the team approach you can use.  Your private evals can be the springboard to get them to agree to evals.  You can get a private OT eval to push the ps OT eval.  Either way, I think that's important.  Remember the ps is asking what is so severe they HAVE to intervene, where you're saying what can we do to help.  Two different bars. 

 

What behaviors are you seeing?  I think you have reason to want an APD screening, a proper APD screening, and an OT eval.  These things would be good.  If you can pick up the RDI book inexpensively and try some of the techniques, you might find it very useful.  It would be something you could do that would change things immediately.  Husbands are harder to change.  Kids though will respond to games.  :)


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#22 Heathermomster

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Posted 11 August 2016 - 08:10 AM

OP, I am alarmed for you when you describe difficulty with the motor.  I'm going to suggest you take your boy for an OT evaluation.  50% of kids with motor issues will have ADHD.  When you make the appointment, be very clear that he needs to be evaluated for motor planning, visual perception, handedness, static/dynamic balance, developmental motor, and core/pincer strength.  Go ahead and ask them to determine whether he needs to be further evaled by a SIPT for sensory.  

 

As usual, TokyoMarie is correct.  Wait until you see the report before you get too excited.  The second time DS was evaluated, the tester went into it not believing son's previous test scores, and she said as much.  Wowsa I was meefed, but when she came back with her testing results, she just shook her head and started explaining.  The NP was actually quite supportive of my family. Wait for the report because it may surprise you.


Edited by Heathermomster, 13 August 2016 - 02:36 PM.

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#23 texasmama

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Posted 11 August 2016 - 08:39 AM

I agree with waiting to see the report.  Some child development clinics are actually overdiagnosing  ADHD/ASD.  All kids who walk in get one or the other label.  It certainly sounds like you have one or both of those diagnoses to explore further.

 

My child with ASD has APD (kind of goes with the territory of ASD), and he had NO problems with phonics or reading.  In fact, he has had no academic issues at all other than working extremely slowly.  He achieves academically according to his abilities.  My ASD kid has EF issues but not ADHD/ADD.

 

I always sound like a broken record, but your ds is young so time will help tease out some of the proper diagnoses.  

 

Did you fill out an Achenbach Child Behavior Checklist? There is one for parents and one for teachers.  It is possible for a homeschool parent to fill out both - not as helpful as getting another viewpoint, but it is possible.  The benefit of a teacher's input is that they see a wide range of kids at the age/grade of your child so they have a good sense of what is "the norm" and what is outside the norm that parents don't usually have.



#24 soror

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Posted 11 August 2016 - 09:53 AM

Your response to your results mirrors my own. 2 years later I do know that ADHD brings all that EF stuff with it. I know that a lot of what I was seeing was EF stuff, especially working memory and processing speed deficits. I'm still not 100% sold that the label is exactly right but it gives him the accommodations that he would need if he went to school and gave me a way to frame his needs and tailor his education. I still think there are things not explained by that label but at this point I also think that sometimes you can struggle with something but not enough for it to be diagnose-able. I do know that know at newly 12 he has made such huge strides and improvements in so many areas. Like his father I believe a lot will take care of itself with time, he has just needed extra time to mature for some things and just more time in general- he isn't as quick as some (which says nothing of his intelligence). Anyway, we work where he is, accommodate how it is needed (and if he was to go to school the NP report would have given him what he needed in that setting) and move forward!

 

ETA- I would also completely agree with looking at an OT eval for what you are describing- you might look into a Speech/Hearing eval as well. We had one done at the college for a pretty reasonable price to rule out speech and auditory issues. At that point I thought well we've covered the bases and the accommodations seem to be moving us forward- I might not exactly understand everything going on with him but perhaps I don't have to to help him.


Edited by soror, 11 August 2016 - 09:56 AM.


#25 Kat w

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Posted 11 August 2016 - 10:02 AM

Thanks OhE :)

#26 heartlikealion

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Posted 11 August 2016 - 10:18 AM

So how does it work? you just ask an OT to look into your son's motor skills? I described most of what was troubling me. I gave a list to the dr of things and verbally mentioned the shoes (which was on the list) and said that a couple of years ago I even cut a sticker in half and put left half in the left shoe, right half in the right shoe so he'd put the shoes together correctly, but he still would mess them up. The dr just said wow and that was it. Moved on.

 

We've never spent a lot of time doing things like throwing/catching or riding the bike. He hasn't had a lot of opportunity. But we do kick the soccer ball with him sometimes and I did practice catching and batting with him in the yard off/on. He did improve this past year.

 

The buttons thing... I think over time that will improve. Just stuff like that is what made me feel like he was behind his peers. He's immature in some areas, but not in others. Which is why at one point I said "could this be a 2e thing?" but I don't know that he's gifted. Intelligence wise he's at or above grade level as confirmed by his tests at the eval and his placement test at school. So academic-wise I'm only worried about him making careless mistakes or not holding onto oral information.

 

So I guess what most are saying is wait for the results. Look them over. Maybe seek an OT? I am not concerned about ASD for him, but I did question the things I've listed in this thread... APD, EF issues, ADHD/ADD. I don't know much about 2e, just something I stumbled upon on this board one time.


Edited by heartlikealion, 11 August 2016 - 10:19 AM.


#27 Kat w

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Posted 11 August 2016 - 10:33 AM

I agree about the therapies. 1000% .
From what I've experienced and friends here where I live have experienced, when you start out with an NP like that....the tseting/info may or may not be on target .

Her being self pay..Thays difficult to go get private therapists , ot etc...when you don't know for sure what your dealing with ir targeting.
I've had friends waste money they didn't have on np's and therapies thst got them nowhere.

When money is a factor, and it sure has been fir me and some of my friends here...let's face it...this stuff gets expensive. When you don't have faith in the np, this NP didn't go over things with her...what kind of service is THAT??

To me, right there, boom. I've list faith. Every one of our 3 np's , even the one I didn't like, went over a pretty detailed report WITH me. I knew what tests were run...I knew what the findings were, I know what course of action was recommended ...I even got referral s to therapist .

So, when she's leaving the office, with what??? ...nothing. And has to wait til it comes in the mail??

Yes, I've gotten all the paperwork in the mail once too. It was to add our discussion s though. Not to tell me what tests and course of action to take.

That's ludicrous IMO.

Thays why i say....find a different doc. Now, I know, money is a thing...a big thing.

But thst makes the point even more. Why?? Waste money on therapies and /or diagnosis he may ir may not have?

So, suppose she goes to say...OT. ( IMO, he needs an audiologist to do an APD screening, to me thsts the biggest issue right now , as described to me) but say she goes to an OT. What's mom gonna say? He does this and that? Then any good OT is going to ask. Well, what did the nP say??? Her NP...has 'said' nothing.

At a very minimum I would call back and see if a follow up was part of the fee she is paying off.

She's paying off the NP, and doesn't know diddly.

We all know, what's in the report is all fine and well...but it's what is discussed between parent and NP that is the REAL meat of the matter.

So, she goes to ot ( i agree he probably does need it) then is the OT has a peice of paper in front of her with no feedback from discussion s of mom and NP.

Then, you waste hours ( who knows how many, even 1 hour to me would be too much ) you waste hour(s) with the OT, trying to asses for herself and figure out her son.

When, a GOOD NP will n discussing with mom, supporting by way if recommending good therapists maybe even ones that take a sliding scale, what issues need to be focused on first..(targeting the most prominent issue therefore, making the most of her dollars, esp since she doesn't have support on this from dad).

I just , fir me, in my good conscience couldn't recommend anything right now besides and audiologist, without getting in front of that NP, ir finding a new one, a new one can asses the report and interview her child and go from there , without running all the tests again.

When you don't have support of hubby. It's VITAL to have support from NP. Thays where the tree starts branching out.

Edited by Kat w, 11 August 2016 - 10:41 AM.


#28 OhElizabeth

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Posted 11 August 2016 - 10:40 AM

Yes, you can find an OT who specializes in ADHD and ASD and have them do an eval.  It will usually be 1-1 1/2 hours, and they'll run some standardized tools for fine motor and gross motor that allow them to see if there are areas that need work.

 

And not to be nosey, but why no sports?  You have health problems?  With the ADHD, sports would be a total natural.  They'll work on self-regulation, vision issues, midline issues, all sorts of things.  The sports will raise dopamine, the very thing you're trying to raise with ADHD meds.  

 

The L/R thing happens.  My dd was that way.  It was a midline thing with her.  I should have put her in more sports.  She did ice skating, but we should have done MORE, with more diversity.  With my ds, he gets VARIETY.  This summer he's doing tennis and gymnastics and swimming and soccer and speed skills.  Lots of variety there.  Each one hits on something different.  Around here OT costs $100 an hour and I can get a class in any of those for $10!  In other words, if I get SOMETHING done on my list of OT goals, I'm doing it for a lot less, even if it isn't as good.  I'm not saying it's a substitute for OT completely, but it sure can be complementary and a lot cheaper and a lot more engaging.  A little OT can give you the info to make your sports and lifestyle choices more valuable.


Edited by OhElizabeth, 11 August 2016 - 10:40 AM.

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#29 OhElizabeth

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Posted 11 August 2016 - 10:54 AM

None of the psychs I've used (except of the ps) had a report in-hand to go over before the sit down.  Sometimes they schedule a 2nd sitdown later, yes.  But initially, nope, not around here.  So that may just vary.  It's all in the hours they bill.  If they're billing more hours, it may be built in.  So it might be that once she gets the report the op could pay for some time (or ask for it if it was included in the original fee) and ask her questions.  But a lot of this is reading the report, reading some books, and learning.

 

Unfortunately, there's a lot of room in there for things that cause problems but aren't enough to get a label.  You can have some auditory processing problems as a weakness but not enough to get accommodated.  You can have social issues but not enough to push over to SCD/ASD.  Some motor planning problems without enough to push over to DCD/dyspraxia.  On and on.  

 

That might not be satisfying, but it's the truth.  So if your hope was clearance (no problem) or label (yes problem), then it's not helpful.  But once you say ok there's a range, and some people's are SO SEVERE they put that disability label on and some people's are enough that it's a relative weakness that it needs to be accommodated for.  The stuff you're seeing is happening, it's real, it will benefit from some intervention, but it may or may not get a label.  

 

That's just how it is.  So intervene ANYWAY and make changes ANYWAY.  

 

Our OT evals were all before psych reports except for maybe one, and that psych report was so (remove nasty words) unhelpful that it wouldn't have mattered anyway.  I mean, it's a nice thought, but I don't have a lot of confidence in OTs.  I will have to shut up there.  I'm just saying.  Show up, let them do the standardized tools for fine motor and gross motor, make sure they check for retained reflexes and run a screening tool for sensory, then decide for yourself.  Some OT with a lot of athletics can be a really good combination.  I put ds, for the most part, in rec level programs, not super competitive ones.  They seem able to accommodate him better and the lower expectations fit his maturity level.

 

Just a total rabbit trail, but my dd fatigued so easily with exertion.  She's low tone, as are the rest of us (me, ds).  Thing is, my tone seems to be improving, as is ds', and we drink lots of coconut milk.  Now maybe his sports are magic, but I'm wondering how much of it is the coconut milk.  So that, again, is another thing where the OT launches you with some information (low muscle tone) and you run with it, not needing so much of lots of OT sessions as just needing to know it's happening to decide your OWN solution.


Edited by OhElizabeth, 11 August 2016 - 10:57 AM.

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#30 Kat w

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Posted 11 August 2016 - 10:58 AM

Just a quick adding:

We all know...not all therapist were created equally lol.
Then shea left to the wind finding and ot or whoever , that may ir *may not* b good.

There are just too many variables and money too tight to be finding therapists that are our best guess. BC at this point, that's all it is...our best guess.

This is where and why a GOOD NP comes into play.

Edited by Kat w, 11 August 2016 - 10:59 AM.


#31 Kat w

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Posted 11 August 2016 - 11:09 AM

I am agreeing with OhE 200% about the OT's. After our place closed me and a few moms here that I went to church with tried various OT's....there's a reason I let my son "self OT" cuz um....in my experience Thays the field we found the most discontent with.

I'm just gonna say it..mama needs to hear it...there are ALOT of not good OT's out there.

Not to mention, they ignore the NP evals and recommendations . and I'm not just talking one. Me and my real life friends here had a plan, we split up visiting different OT'S in hopes if finding a good one we all could go to...
Well...NONE of us are in OT right now :/ ouy

OT has been by far, the biggest waste if my money and not BC my kids don't need it. They do, but BC there are ALOT of not good ones out there.

That's why I say...go to NOONE til you talk to that NP...ir get a new one.

Mama needs support. It starts with the NP interpreting the findings....'interpreting ' being key .
A diff NP can translate results/findings if what's been done.

That no? No way personally fir me would I stick with her.
You need someone who is going to help, support, recommend .

Not....send you a report in the DA gone mail. Sheesh.

Edited by Kat w, 11 August 2016 - 11:13 AM.

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#32 shawthorne44

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Posted 11 August 2016 - 11:22 AM

Not coming from experience, so just consider if this might apply to you.   The doc said he didn't have Auditory Processing problems because he can blend.  The doc also seemed to assume a school setting.   I wonder if the reason your son doesn't have blending problems is because you've worked with him MUCH more than the school setting would have.  



#33 heartlikealion

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Posted 11 August 2016 - 11:28 AM

Not much time to reply so I'm just addressing the question about sports

 

We live in an area where putting him in sports is a huge headache. Kinda isolated, sports are expensive, have to drive him back and forth. Hours conflict with dh' work schedule so then it all lands on me usually. He did a year of Kung Fu. We almost put him back in it this year... but now we're rubbing pennies together to pay for tuition at private school because I needed a break from the homeschooling and he honestly probably needs to be around someone other than me 24/7 with us butting heads all day.

 

If we did Kung Fu right now then I'd pick ds up from school, then come home. Then dh or I would take him to Kung Fu 45 min. in opposite direction of school. Then he comes home, has to do homework, go to bed. Kinda a lot on a school night. And twice a week minimum for his age group.

 

Soccer, baseball, etc. we've looked into. Expensive, out of the area, games and practices not convenient times given where we live. Then ds doesn't fare well in outdoor stuff... he may have grass allergies, complains about heat immediately. Doesn't like being outdoors long. Isn't even that excited about recess at school.


Edited by heartlikealion, 11 August 2016 - 11:28 AM.


#34 Arcadia

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Posted 11 August 2016 - 11:39 AM

For sports, indoor basketball, recreational gym or parkour, might work. My older who loathe heat would do indoor sports. If travelling to and from sports is a problem, maybe buying a table tennis table might work. My condo clubhouse has a table tennis table that is under $300 and can be folded and roll away when floor space is needed. Even playing air hockey at our clubhouse gave my kids a good work out.

We need a referral for in-network OT and my kids are not "sufficiently behind" to be referred. So we did gym since that is cheaper than hunting out of network OT.
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#35 heartlikealion

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Posted 11 August 2016 - 11:53 AM

In the past I looked into basketball. Had a religious spin on it. We did not like the idea. Do not know if any other basketball teams/sports are indoors that we failed to look into. Swimming is out. Table tennis sounds fun/good.

Arcadia, I am still confused. So are your sons "just quirky" or did they get diagnosed with something? I could not tell if you were saying my concerns were not unusual behaviors or not unusual for ADHD.

Edited by heartlikealion, 11 August 2016 - 11:54 AM.


#36 Arcadia

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Posted 11 August 2016 - 12:34 PM

Arcadia, I am still confused. So are your sons "just quirky" or did they get diagnosed with something? I could not tell if you were saying my concerns were not unusual behaviors or not unusual for ADHD.


They are just quirky. We got the evaluations to help answer public school and outside class teachers questions. They have traits of this and that but as a whole it is neither here nor there. However not having a label means that their teachers do learn to cope with my quirky kids because it becomes their classroom management issue.

I know three kids with ADHD diagnosis in public schools. Two is obviously hyperactive, one is fidgety. Her mom thinks her daughter fidget due to boredom but did not contest the diagnosis as her daughter gets accommodations and services. It is hard to tell for ADHD and for motor skills because severity and root causes defer. Different evaluators also noticed different aspects of my kids. Labels get drop or change too.
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#37 heartlikealion

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Posted 11 August 2016 - 12:36 PM

He had stuff on his desk. He pointed to a few things. Never told me names of tests, but I did not think to ask, either. I figured that *was* our sit down but I was stumped as to what to ask and I had a very fussy toddler in my arms. She is not normally that fussy but that day was screwed up majorly. We spent a total of 3 hrs on the car (not all at once).

I figured he was just mailing me what was in his desk and/or a summary? I really do not know but asked if I ever come back for the teacher form is that included in the fee and he said yes because it normally is all done together. Pretty much said don't bother with follow up unless you are looking to medicate.

#38 heartlikealion

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Posted 11 August 2016 - 12:45 PM

Thank you for clarifying, Arcadia.

Dr was not rude just meant don't need to ask teacher to fill out form later this sem. unless you are worried about child's school performance/want meds. His teacher is away at the moment and he has a temp teacher. He told me school went much better his third day. I really, really hope he has a good day today. He had a test or quiz and I hope his memory/recall was ok. Not sure of format, I think he has to write answers from head not mult. choice.

#39 OhElizabeth

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Posted 11 August 2016 - 12:48 PM

The reason the psych is saying that about the phonological processing is because on some APD screening tools, the TAPS3 for instance, the test IS half phonological processing.  My ds bombed that half, but at the audiologist (before 7, so just talking it through) there was no reason to think APD.  And I don't think the SCAN3 focuses on that.  I wasn't in the room for the SCAN3, but others in here maybe have?  I've heard them saying it uses words.  Just doesn't make sense to have a screening tool like the TAPS3 where someone can fail half of it due to another issue (dyslexia).  That's no good as a screening tool. 

 



#40 OhElizabeth

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Posted 11 August 2016 - 12:51 PM

Thank you for clarifying, Arcadia.

Dr was not rude just meant don't need to ask teacher to fill out form later this sem. unless you are worried about child's school performance/want meds. His teacher is away at the moment and he has a temp teacher. He told me school went much better his third day. I really, really hope he has a good day today. He had a test or quiz and I hope his memory/recall was ok. Not sure of format, I think he has to write answers from head not mult. choice.

 

I think you're going to get the answers in your printed report.  My dd had low working memory, low processing speed, and low word retrieval.  So not only does she have trouble focusing, but when she does focus everything is HARD for her!  She's bright, but things are hard.  And that means they wear her out.  So then you get behaviors and compensations because she's tired.  :(   

 

Some kids get a bump with interactive metronome.  It's something you can do for free, just some metronome work at home.  You can work on working memory at home for free.  You could decide at some point to bite the bullet and try meds.  They can be pretty dramatic for some kids.

 

I'm sorry he's having such a hard time.  While you're advocating, look for things he does WELL and make sure he's getting some time with them.  That was one of the really GOOD things our psych did in our first round of evals.  He talked about the strengths she had and how to work to them.  It's sort of the difference between being a failure at somebody else's game and finding a game you're actually going to be good at.


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#41 OhElizabeth

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Posted 11 August 2016 - 01:02 PM

Fwiw, sometimes it takes a long time to come to terms with diagnoses and what they mean, whether they're correct, how they play out in your house.  A lot of us here have gone through that, and maybe just knowing what you're feeling is normal/common helps a little.  First time I got told by a practitioner that dd had ADHD (said with this GREAT REVELATION kind of voice) I sat on it for a YEAR.  A full year.  Just did nothing with it.  Because it seemed so ABSURD, kwim?  It didn't seem like it explained anything.  Then I went through a bunch of other stages.  In some ways she was amazing to work with and in some ways a real pain in the butt.  And the nuances from her initial report did explain why she was confounding to work with, but they weren't really things you just up and cure or undo or resolve or whatever.  They are what they are.  

 

So then, as you move through the shock and then the what is it and later get into the ok I think I might try to do something about this, you just start sifting through options.  And there's really no right or wrong about that, no essential timeframe.  You have a toddler, so life is a little crazy and tiring right now.  Sounds like school is working well for him.  I think the main thing is consider the child as a WHOLE, keep the child WHOLE.  There's no evidence that, over a population, meds affect academic outcomes.  Sure at the individual level, and people make choices.  But these kinds of things are just choices.  So I would just think in terms of the whole child: what makes him light up, where does he seem most whole, in what settings does he seem most whole or motivated or engaged or successful, and do more of those things.  And then on the things where he's weak, bring in some intentional supports.  He's going to be weak on EF, working memory, self-regulation (maybe), social (maybe), following through with chores/tasks (probably, haha).  

 

That's what we've done with dd, and although there are things I go wow, wish I really would/could have done xyz better, reality is she's WHOLE.  I think you can't go wrong looking at the balance of how he is as a whole.

 

As far as the sports, the Y has been really good for us, but I get that your opportunities vary by location.  Is swimming out because it's HARD or because it's expensive, not preferred, etc.?  There are a lot of things that are slow/crunchy/not easy for my ds at first, so I've kind of taken the jump in lightly, let it come with more work approach.  We've been really fortunate to find people who are good with him, who can put up with behaviors, who will flex the age requirement or do what it takes to make it work.  But I get if it doesn't work.  Maybe even think outside the box.  Working outside, wood working, hunting, chopping wood...


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#42 heartlikealion

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Posted 11 August 2016 - 01:06 PM

Wow that test sounds so misleading! No wonder it can cause confusion. Thanks for explaining.

He does well with most academics. It really is the getting dressed, focusing/listening, and getting on task that are usually the problems. He currently loves to read so we are making sure he takes a book with him to school. He seems to enjoy the academic part of school and not even sure he likes the extracurriculars!

Edited by heartlikealion, 11 August 2016 - 01:07 PM.

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#43 OhElizabeth

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Posted 11 August 2016 - 01:08 PM

PS.  It's pretty sad that the discussion in the psych's mind was reduced to medicate or there are no options.  If he ran enough tests, there will be data in there to give you options.  It's just a matter of waiting for the report.  I think sometimes some of these $300 an hour people just don't know a spit nickel about what they're really doing.  They run the tests, which are given then to the school for the IEP process, and unless it flags really low nothing gets done.  They don't really learn how to APPLY those results to change your life.  I was really fortunate to have, in our first np experience, somebody who at least had this sort of libertine approach to things, saying to throw your anxiety to the wind and do what really makes them grow.

 

But yeah, you should have more options than meds, mercy.  You might not.  There may be absolutely nothing in that report that you go hey that's discrepant, let's work on that.  But I bet there will be.  And even LITTLE things can make a BIG shift.  Any time you're working on EF, you usually get some carryover to life.  That report will have things to help you, even if the psych himself is too (removing unkind sentiments) to know what to do with it.

 

There comes a point where you pull up those boot straps and realize you're going to succeed IN SPITE of some of these people, not because of them.  Don't let them intimidate you, mercy.  You're going to be the magic here that determines his outcome, because you are setting the tone, finding the opportunities...


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#44 OhElizabeth

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Posted 11 August 2016 - 01:09 PM

Wow that test sounds so misleading! No wonder it can cause confusion. Thanks for explaining.

He does well with most academics. It really is the getting dressed, focusing/listening, and getting on task that are usually the problems. He currently loves to read so we are making sure he takes a book with him to school. He seems to enjoy the academic part of school and not even sure he likes the extracurriculars!

 

You know, just for your trivia, you might read across labels.  Temple Grandin has a new book The Loving Push coming out.  I'm super psyched to read it.  I think if he's not drawn to ANY extra-currics, that I'd say hey let's try some!  You don't have to like 'em, just TRY something.  Give some push there.  He might be holding back for reasons you don't realize.  Might be the social or the noise or some anxiety or...  And a lot of that doesn't get bust through by sitting at home.  


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#45 heartlikealion

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Posted 11 August 2016 - 01:22 PM

Swimming is out because he does not know how, has only been in a pool three times and almost drowned this summer. Woke up hrs after swimming vomiting. We were so scared it was dry drowning or whatever. No nearby pools. Pain to drive an hr, get all wet, sit in car (could prob change there but still), pay for membership but hardly use it. So for now it is out. But later, sure, if he is interested he might excel/enjoy it.

Took him to family yoga day a week ago. I was wearing toddler lol did not work out so well for me ha! Anyway, he was well behaved but not doing things quite right. Overextending almost every pose, losing his balance. We (teacher and I) tried to gently correct him but he did not seem to get it. I think he had a good time overall, though. He did trial Kung fu weeks ago when dh wanted to sign him back up and the thing was (according to dh, I was not in studio) ds did reverse of everything but besides that did pretty well.

I feel confident a lot of things will improve but yes, I did kinda want answers. That is just how I am. Not even looking to medicate and if I felt school was making things worse I would homeschool again but make changes here and maybe hire outside help because I have two kids that are hard to get to cooperate simultaneously and I get overwhelmed or distracted and cannot do routine well. I have always had time management issues so it is really hard for me to give him structure.

#46 heartlikealion

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Posted 11 August 2016 - 01:30 PM

Hope the book is on audible lol I will keep an eye out.

Oh he is not anti extracurriculars per se. Just when I asked about his school day he seemed more pumped about the academics lol got excited when they did math. I think maybe dh should try guitar with him. His child guitar may or may not be useful as they are often not made well. But something to look into.

Yes! Thank you. Sums up my thoughts... Oh nothing to do unless he struggles and you want meds!

#47 Kat w

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Posted 11 August 2016 - 02:08 PM

Yes ma'am heartlikealion,
What OhE said . you ARE :) going to do this in SPITE of them.

You can do this.:)

That's what I say to myself everyday. I have it written on my bathroom mirror even.
We WILL do this, no matter what they say.

We know our children best. We work with them everyday.
He has you :)
His loving mama WILL get him through this.
OhE coined that perfectly :)
...in spite of them.
You got this. You're doing the right things for *yourself* and him.
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#48 heartlikealion

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Posted 11 August 2016 - 02:16 PM

That's a good motto lol
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#49 Kat w

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Posted 11 August 2016 - 02:18 PM

Yup. My mirror keeps 'erasing itself' from the humidity from the shower lol.

I guess it's good practice to keep writing it :) keeps it in my mind.

My boys WILL graduate highschool :)

#50 OhElizabeth

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Posted 11 August 2016 - 02:35 PM

Swimming is out because he does not know how, has only been in a pool three times and almost drowned this summer. Woke up hrs after swimming vomiting. We were so scared it was dry drowning or whatever. No nearby pools. Pain to drive an hr, get all wet, sit in car (could prob change there but still), pay for membership but hardly use it. So for now it is out. But later, sure, if he is interested he might excel/enjoy it.

Took him to family yoga day a week ago. I was wearing toddler lol did not work out so well for me ha! Anyway, he was well behaved but not doing things quite right. Overextending almost every pose, losing his balance. We (teacher and I) tried to gently correct him but he did not seem to get it. I think he had a good time overall, though. He did trial Kung fu weeks ago when dh wanted to sign him back up and the thing was (according to dh, I was not in studio) ds did reverse of everything but besides that did pretty well.

I feel confident a lot of things will improve but yes, I did kinda want answers. That is just how I am. Not even looking to medicate and if I felt school was making things worse I would homeschool again but make changes here and maybe hire outside help because I have two kids that are hard to get to cooperate simultaneously and I get overwhelmed or distracted and cannot do routine well. I have always had time management issues so it is really hard for me to give him structure.

 

I can see why you're so concerned!  That sounds very scary and dangerous!  Our Y has an adaptive aquatics class, and if he doesn't fit in well in a standard swim class, that would be your next step.  They welcome kids with ADHD in the adaptive aquatics class.  It's done with a parent/adult, and it's a small group setting with a person experienced with SN.  My ds took a LOT longer than the average bear to learn to swim, and it's a safety thing.  It doesn't get better by waiting.  None of the things you're describing get better by waiting.  It gets hard with an older dc to begin lessons, because they age out of the young child sequence and no longer fit in.  In fact, at our Y they pretty much are done with the kid learn to swim sequence by age 12.  My ds has taken 4 times as long as everyone else to learn, so if you started now and just did it diligently, in lessons twice a week or whatever your local place does, it would give him time.  It's just a thought.  

 

It definitely sounds like you'll learn some things in that OT eval.  My dd has some mild praxis (not enough to get her a label, but enough to be pesky).  Your body awareness and sense of self in space is called proprioception.  You'll notice it with athletes, because they're very aware of where their bodies are.  As we use the muscles and build tone, we increase proprioception and hence improve motor planning, etc.  There's a book Beating Dyspraxia with a Hop, a Skip, and a Jump if you want some things you can do at home.  They're just sort of good things, not hard to do.