neuropsych- what did you learn/change immediately? what later?

[LaughingCat]

Finally had the neuropsych appt yesterday -- the only thing she told me was 'this is a complicated one' :sigh: 

 

In this in-between time until we get the results I wondered if people would share -- what did you learn (or change in what you do) in the immediate impact of the report?  and what changed as you as assimilated more the information?

 

 

[PeterPan]

We KNEW you'd pull through and have a very complicated situation that really got your money's worth!  :)

 

Seriously, it's going to be fine.  She's going to land on some combination of DSM codes that she feels best expresses where it is right now, where it's going, or the services she wants you to have access to.  Think through everything you ever suspicioned and make your list of questions based on that.  That to me was the hard part, really feeling like I had addressed everything.  I went in with pages and pages of questions.

 

Impact?  You've done this before or this is your first time?  You're going to have battlefield trauma, keel over, and need pans of brownies and a trip to Olive Garden.  (Sorry, I'm really hungry.)  When I have the long talks, sometimes it's like NOW WHAT, and sometimes it's like but we already sorta figured that, meaning it didn't feel very enlightening.  And sometimes it's like HOW COULD THAT JERK SAY THOSE NASTY THINGS ABOUT ME and recovering from your security bubble burst, kwim? 

 

For the first round with ds, that's how it was.  Our big impact was me counterbalancing the damage the jerk had done to my internal psyche.  Did I mention he was a jerk?  Then it was putting up with dh asking why we paid all that to learn nothing.  It was only with the 2nd and 3rd psychs that we learned stuff directly from them.  The goods from the 1st psych were buried in the report, in scores that I had to parse.  That's really the longer stage you're talking about, where you go over things and look at discrepancies (like why is this thing 30% when everything else is 95%) and try to figure it out.  

 

Changes depend on how in shell shock you are.  Really, psych #1 was SUCH a jerk about ds, I never really figured out the value of the report or the hidden gems until months later.  I was rereading the report (because every time you reread you learn something knew), and all of a sudden there stuff was.  

 

So I think you keep learning as you ask questions, reread, ask more questions.  If your psych is good, see if they'll let you call up with brief follow-up questions or have a follow-up session 6 months later.  

 

Eat Olive Garden and brownies for me.  I'm supposed to be thinning, or I'd eat them with you.  Actually, if you were here, I'd eat them with you anyway.  :)

[PeterPan]

I'll give you a more brief answer.  Your actual homeschooling changes will come because you will internalize the implications and causes of the discrepancies hidden in the test scores, you will advocate, they will bug you, and you'll ask what you DO about them.  That's when the changes happen.  It's not something the psych really does FOR you.  It's more you sitting with that report and looking at numbers and figuring out what they MEAN and why they are the way they are.  Then you scratch your head a lot, ask on the boards, and it slowly evolves.

 

In other words, you're going to become an expert in a lot of things you never even knew existed.  It's that Welcome to Holland thing.  :)

[prairiewindmomma]

I have been pondering this all afternoon, and will chime in later. Going the neuropsych route landed us all in therapy and it has been FABULOUS. We talk about handling school issues and she has been great at helping me figure out how to make this a more positive experience.

 

The biggest shock and change has been dealing with the low processing speed. I was shocked to discover it and it has been mind blowing how much stuff ties back to it. The 2E, dysgraphia, dyspraxia stuff I already "knew" about.

[prairiewindmomma]

Today's gem: his processing speed increases with rhythm so I should consider giving him shakers in each hand so he can shake out and spell spelling words.

[GoVanGogh]

We just got our report back last week.

DH and I walked out of the appointment with very different perspectives.

DH said, "See, we didn't learn anything we didn't really already know." (Which was true...)

While I walked out, holding the report tightly with both hands, saying, "This is exactly what I needed to know! I can't believe we finally know."

It was that confirmation. That final piece of the puzzle. The part that made everything else make sense.

Yes, we did already know everything in one sense, but now we really know it.

On one hand it was very freeing - to know that his struggles were beyond his control and not my fault.

On the other hand, it was very suffocating. Like a ton of bricks had dropped down on my head.

Two days after we got our report back, I went out for an early morning run. I was about two miles from home, running great, when I suddenly couldn't breath and just collapsed to the ground. I sat on someone's curb and cried like crazy for about five minutes before I could pull myself together and walk home. That was the moment the bricks came crashing down on me.

Our neuropsych gave us lists - what to do in the immediate, how to approach this, suggested books to read. Once I had my meltdown, I could finally approach the report anew.

 

[Heathermomster]

We just got our report back last week.

DH and I walked out of the appointment with very different perspectives.

DH said, "See, we didn't learn anything we didn't really already know." (Which was true...)

While I walked out, holding the report tightly with both hands, saying, "This is exactly what I needed to know! I can't believe we finally know."

It was that confirmation. That final piece of the puzzle. The part that made everything else make sense.

Yes, we did already know everything in one sense, but now we really know it.

On one hand it was very freeing - to know that his struggles were beyond his control and not my fault.

On the other hand, it was very suffocating. Like a ton of bricks had dropped down on my head.

Two days after we got our report back, I went out for an early morning run. I was about two miles from home, running great, when I suddenly couldn't breath and just collapsed to the ground. I sat on someone's curb and cried like crazy for about five minutes before I could pull myself together and walk home. That was the moment the bricks came crashing down on me.

Our neuropsych gave us lists - what to do in the immediate, how to approach this, suggested books to read. Once I had my meltdown, I could finally approach the report anew.

GVG, this makes me cry.  You have worked so HARD!!!  Hang in there.

:grouphug:  :grouphug:

[WoolC]

We just got our report back last week.

DH and I walked out of the appointment with very different perspectives.

DH said, "See, we didn't learn anything we didn't really already know." (Which was true...)

While I walked out, holding the report tightly with both hands, saying, "This is exactly what I needed to know! I can't believe we finally know."

It was that confirmation. That final piece of the puzzle. The part that made everything else make sense.

Yes, we did already know everything in one sense, but now we really know it.

On one hand it was very freeing - to know that his struggles were beyond his control and not my fault.

On the other hand, it was very suffocating. Like a ton of bricks had dropped down on my head.

Two days after we got our report back, I went out for an early morning run. I was about two miles from home, running great, when I suddenly couldn't breath and just collapsed to the ground. I sat on someone's curb and cried like crazy for about five minutes before I could pull myself together and walk home. That was the moment the bricks came crashing down on me.

Our neuropsych gave us lists - what to do in the immediate, how to approach this, suggested books to read. Once I had my meltdown, I could finally approach the report anew.

This is almost exactly like my experience receiving the official report. I knew all along and did not have a big reaction the day of, I just felt confirmation of what I already thought to be true. A few days later I just felt a suffocating finality about the situation and had a panic attack during a trip to the roller skating rink. I guess even though I knew, I always wanted to believe it was just a phase we would grow out of.

 

Anyway, it took about 6 weeks between our testing and finally receiving our report so during that in between time I was reading resources, researching various therapies available in our area and realizing that all of the challenges we had been facing made perfect sense from this new framework. I think it helped to soften the blow when our diagnosis became "official."

[WoolC]

Also, as far as the immediate changes we've made: I've gone to local workshops to find out about services and resources in our area. I'm taking my time researching our options rather than jumping into every therapy on the market (ds has been diagnosed with ASD). I'm reading a ton and I've taken the pressure off of myself to solve all of our challenges overnight. I think the biggest impact has been on my husband and extended family finally "getting" what I've been trying to communicate for some time now. They've all been very supportive of his needs and my ds has visibly relaxed in his relationships with extended family.

[kbutton]

Also, as far as the immediate changes we've made: I've gone to local workshops to find out about services and resources in our area. I'm taking my time researching our options rather than jumping into every therapy on the market (ds has been diagnosed with ASD). I'm reading a ton and I've taken the pressure off of myself to solve all of our challenges overnight. I think the biggest impact has been on my husband and extended family finally "getting" what I've been trying to communicate for some time now. They've all been very supportive of his needs and my ds has visibly relaxed in his relationships with extended family.

 

Yes, here too.

 

I realized today that while I've had this thought in my mind for a while, I think I may finally have the wings underneath me to be able to tell others who have an opinion of some kind (but not an informed one) about my son or about special needs, "GO POUND SAND." (That's the nice version.) It was a very exciting thought.  :lol:

 

Hopefully I will learn to wield this superpower/thought nicely, lol!

[Crimson Wife]

Ours was a different situation than a lot of the PP because we'd already gotten over the shock of the big diagnoses months (the hearing loss) to years (the autism) earlier. So with the NP, it was more trying to nail down exactly what was happening in DD's brain in addition to the physical and developmental disabilities.

 

The working memory deficit being both visual and auditory was a bit of a surprise because she's a visual learner. We're going to bite the bullet at some point and try CogMed, as pricey as it is.

 

The rapid naming deficit I'm still not certain I understand what it actually means in terms of DD's cognitive functioning. It seems like a symptom rather than a cause, KWIM? Is the hiccup in the visual processing, word retrieval, actually getting the word to come out of her mouth, or some combo? I haven't started any remediation aimed at RAN because right now we've got our plates full with LiPS and trying to build up her general speech & language skills.

 

Having the official proof that she is 2E is useful because now it's not just my word saying that she's really bright despite all of her challenges.

[displace]

Finally had the neuropsych appt yesterday -- the only thing she told me was 'this is a complicated one' :sigh:

 

In this in-between time until we get the results I wondered if people would share -- what did you learn (or change in what you do) in the immediate impact of the report? and what changed as you as assimilated more the information?

We were after schooling, with 1-2 hrs of homework/remediation daily after school despite giftedness. I spent time after testing but before diagnosis researching. I trolled many boards, asked a lot of questions, researched studies and websites. So when we did get a diagnosis I knew it was time to stop public school at the moment for homeschool.

 

We got evals after results in a first wave, as well as more later and still need others. It's a rolling process of eval, learn, work/improve, eval, learn, add another therapy or take away.

 

For me I read, read, go to conferences, read, study, and research still. I'm working on making things better for DS and me.

 

I also had to think differently. It took time to take conventional homeschooling advice with a grain of salt. One hour per grade for lessons? I still feel a little defensive when I see posts like that. I'm constantly shifting our schedule to add and take away. Progress seems slow but is progress.

[PeterPan]

I also had to think differently. It took time to take conventional homeschooling advice with a grain of salt. One hour per grade for lessons? I still feel a little defensive when I see posts like that. I'm constantly shifting our schedule to add and take away. Progress seems slow but is progress.

I'm just curious, why is that bugging you?  I think it's informative for what is developmentally typical in a one on one situation, but it's not really practical to achieve with our kids.  Like if we stopped there, they'd never have any fun!  And mercifully, he eats stuff up, so sometimes more is more with him.  So you're wishing you could get done as fast as other people?  It guilt-trips you?

[Heathermomster]

Months prior to the first NP visit, DS was tested by Scottish Rite and identified as dyslexic.  At that time, I walked around with a pit in my stomach and did not sleep for a couple of nights.   During that time, I wasted no time and secured a reading tutor for the following school year.  Like, I started on a Tuesday and knew by Friday that he would be working with a tutor.  I was able to sleep better then.  We already listened to audio books, watched documentaries, and were active with hands-on activities.

 

We never dreaded the first NP visit because it never occurred to us to be bothered.  Son's school requested the NP report and we were blessed to use an outstanding NP.  When DS received diagnosis for multiple SLDs, we'd never heard of them.  We knew that DS was bright, just not HOW bright.  With the SLDs identified, I read about them and tried to connect with other parents.  I also spoke with educators and started networking. To this day, I have never met a student IRL with son's mix, and the ones that are close to his SLD mix do not get accommodated as my son.  Outside of the WTM, we fly solo for the most part.  We never took the dysgraphia/dyscalculia SLDs seriously until 5th grade when they could no longer be ignored.  I wound up homeschooling half of 5th grade at that time.

 

 

 

[Maus]

I struggled a bit with thinking of my children differently because of their labels. I had to consciously tell myself that they were the same people they were the day before I knew the diagnosis.

 

I also felt very overwhelmed by the sheer volume of recommendations, and had to give myself permission to implement them one or two at a time.

 

I started with one or two that jumped out in kind of a "Oh, I get that! I can do that!" kind of way, and now I reread the reports every once in a while, research one or two things that seem especially urgent, and try to get those going.

 

We are still pretty new at this. One child got her eval not quite a year ago, and the other got his for months ago.

[PeterPan]

Heather, you've met my ds.  :)  Of course my ds adds a few more fun things to the mix than your ds.  And yes, your willingness to make accommodations and technology reality and normalized is AWESOME.  It really raises the bar.  :)  I didn't realize you hadn't taken the other SLDs seriously till 5th.  Was that because he seemed to be doing well?  Or you were overwhelmed?  Another reason?  I just had never heard that story from you and want to know more.  

[Heathermomster]

We were after schooling, with 1-2 hrs of homework/remediation daily after school despite giftedness. I spent time after testing but before diagnosis researching. I trolled many boards, asked a lot of questions, researched studies and websites. So when we did get a diagnosis I knew it was time to stop public school at the moment for homeschool.

 

We got evals after results in a first wave, as well as more later and still need others. It's a rolling process of eval, learn, work/improve, eval, learn, add another therapy or take away.

 

For me I read, read, go to conferences, read, study, and research still. I'm working on making things better for DS and me.

 

I also had to think differently. It took time to take conventional homeschooling advice with a grain of salt. One hour per grade for lessons? I still feel a little defensive when I see posts like that. I'm constantly shifting our schedule to add and take away. Progress seems slow but is progress.

Don't be defensive because that advice doesn't make sense.  I cannot physically sit and cover Bible and the 3Rs in one hour nor do I want to.  Add in science/history/art/music practice, and we go way over one hour of school per grade.   

[Tiramisu]

I found out my dd had depression. I knew she had anxiety for many years and had been in therapy for that, but I or none of the therapists picked up depression. We got treatment for that and it really helped.

 

I also found out dd had visual issues and that really explained some things--like why visuals didn't seem to help to accommodate for the CAPD and why they often seemed to make things worse.

 

We also found out about the dyspraxia. The NP didn't give her a dx but said she would have made a case for it and have sent her to OT if she were younger. She did include that weakness in her report and that may have helped entitle her to some accommodations in college, like a notetaker, if we hadn't already had that covered with the CAPD dx. 

 

ETA: A couple years before the NP eval, we had a basic eval with an educational psych. That confirmed for me that there were weaknesses and gave me permission to allow her the time she needed to get through things. I think that was the start of me accepting her for who she was and not continually question if either of us was doing something wrong.

[Lecka]

I went into a school eval expecting to hear ADHD.  My son's teacher really thought he had ADHD.  I thought he probably had ADHD.  

 

When we went into the meeting, we found out he had a lot of problems from the OT eval, and would need OT, and that a lot of things were stemming from this OT stuff.

 

I was like, "what????"  His teacher was, too.

 

What is funny, too, the teacher and I were the ones to fill out the parent and teacher ADHD forms.  The school psychologist was like, "nope, the forms you filled out yourselves do not show elevated levels in the things we look for, for ADHD."  

 

I had never really heard of OT for anything besides just pencil grip and HWT-type handwriting help.  

 

So there, I had a process of noticing things that I had always thought were signs of a bad attitude, lack of focus, etc., and seeing that they were in an area he scored low in on the OT eval.  

 

His teacher, who I respect and who made a 180 with him after this meeting, had thought that he "could" be doing some things in her class and that he just "wasn't."  It turned out to be in things that were his OT weaknesses.   

 

It took a while for me to be done seeing those connections (it took until summer for me to go "swimming!  of course!").  

 

 

[Heathermomster]

Heather, you've met my ds. :) Of course my ds adds a few more fun things to the mix than your ds. And yes, your willingness to make accommodations and technology reality and normalized is AWESOME. It really raises the bar. :) I didn't realize you hadn't taken the other SLDs seriously till 5th. Was that because he seemed to be doing well? Or you were overwhelmed? Another reason? I just had never heard that story from you and want to know more.

There are moms on the board who used technology three years earlier than we did. I don't deal with spectrum or anxiety issues at all.

 

The school kept underplaying the dysgraphia and I listened. We were bitten in 5th grade when son's new principal and Bible/history teacher decided they would not accommodate the handwriting. By the time we went up the chain and actually received the accommodations from the Head Master, I was too upset to keep DS enrolled. I brought DS home and taught him to type.

 

Math...Well, math was not a super big issue until 5th grade. He learned the add and subtraction facts to 20 by the end of 2nd grade. He knew about 80% of his multiplication facts in 5th grade but was slow. Division and fractional work were affected by his lack of multiplication fluency. While DS was home, I realized that something had to be done, so I researched and discovered RB. I combined a bunch of info with the RB methods and DS mastered the multiplication and division facts. DS was like a phoenix, and our relationship changed in a weird, positive way. His 5th grade SAT-10 scores jumped between 2-4 grade levels across all subjects in addition to 3-4 PHS scores. Yeah, I know that doesn't mean anything, but it was a big deal to us at the time.

 

Overall, the experience convinced me that I could effectively homeschool because I was not convinced prior to that. However, DS likes the classroom, so we sent him back for 6th grade. He is home now but takes classes in and out of the home. Only two women IRL felt that we should homeschool.

[FairProspects]

We were after schooling, with 1-2 hrs of homework/remediation daily after school despite giftedness. I spent time after testing but before diagnosis researching. I trolled many boards, asked a lot of questions, researched studies and websites. So when we did get a diagnosis I knew it was time to stop public school at the moment for homeschool.

 

We got evals after results in a first wave, as well as more later and still need others. It's a rolling process of eval, learn, work/improve, eval, learn, add another therapy or take away.

 

For me I read, read, go to conferences, read, study, and research still. I'm working on making things better for DS and me.

 

I also had to think differently. It took time to take conventional homeschooling advice with a grain of salt. One hour per grade for lessons? I still feel a little defensive when I see posts like that. I'm constantly shifting our schedule to add and take away. Progress seems slow but is progress.

 

It bugs me too. Those recs are absolutely ridiculous for kids with LDs or slow processing. I don't know if part of it is grief over the fact that we will never be that fast or frustration with the ignorance of those who haven't experienced anything different and yet claim to be able to advise everyone. But yes, it takes much longer with LDs. I was reading some quotes from dyslexic high schoolers the other day that basically said variations of "I can do any and all the work I want or need to, it just takes me longer." and I reminded myself that I need to leave the boys that time and space in  our schedule. They *can* do it, but they will need more time.

[displace]

It bugs me too. Those recs are absolutely ridiculous for kids with LDs or slow processing. I don't know if part of it is grief over the fact that we will never be that fast or frustration with the ignorance of those who haven't experienced anything different and yet claim to be able to advise everyone. But yes, it takes much longer with LDs. I was reading some quotes from dyslexic high schoolers the other day that basically said variations of "I can do any and all the work I want or need to, it just takes me longer." and I reminded myself that I need to leave the boys that time and space in our schedule. They *can* do it, but they will need more time.

I think this is worded better than what I would say. :).

[Lecka]

I can be frustrated by ignorance.  "Just do this, it isn't that hard."

 

If it is that hard, you must be doing something wrong, is how it can come across to me.