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Just thinking of you, OhE, and hoping everything goes well at your appointment Monday. Most of all, I hope the psychologist provides answers that will bring you any help you need and some peace in your heart.

 

I think you all the time, the troubles that you've shared over the years and how you worked through them, and how they've helped me immensely and so many others. When I had a particularly hard day this week, I even thought of getting in my car and driving to Ohio. Isn't that funny? I reached the end of my rope, felt completely hopeless, and thought, "OhE could help me get through this." See, you are definitely not alone, and I always want to know how things are going with you.  :grouphug:

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I haven't been around much so I didn't realize you have been having trouble getting the assistance you need.  Hope this one answers all your outstanding questions.

It was sort of the inverse of what you'd think!  I had walked away from the whole question, thinking just accept what the big name psych said.  So then the school psych had his eyebrows up and said our explanations were incomplete and then the next person (social skills group leader) said we needed a 2nd opinion.  I totally was NOT looking for this.  We just sorta bought the lines the psych gave us and had decided to live with it.  It was the IEP process for the disability scholarship, ironically enough, that pushed this whole thing.  Go figure.

 

Answer all my questions, hmm...  That would be hard.  I'm realizing I may not have even had the right questions!  This guy (the new psych) totally blew my mind.  He said I was meeting "exceptional challenges with average solutions" and needed to get on a chair (metaphorically) and reach higher!  Like dude, ALL the lightbulbs clicked on at that point!  All the do I have to, do I make him, is he being bad.  I was asking the wrong questions.  So I'm starting over, trying to make sure I'm asking the right questions this time.

 

And you know maybe the psych won't think any of this is what's up when he meets him.  But at least we've got somebody who's going to slow down and try to identify it if it's THERE, rather that stupidity like "but he walked into the room and looked me in the eye and talked to me!"

 

I didn't have a stake in how this turns out.  Either way he gets a disability scholarship that funds our therapies (hopefully!) and some educational stuff maybe.  The label alters the amount and opens more doors.  Either way he gets the same basically help he needs and that I started advocating for in the first place.  If he does have the label, he actually NEEDS the higher amount of interventions, which means it's worth fighting for the right label and right interventions.  I finally have an OT locally who can do neurofeedback and sensory.  I'm excited about what we might get to do for him with the scholarship.

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Just thinking of you, OhE, and hoping everything goes well at your appointment Monday. Most of all, I hope the psychologist provides answers that will bring you any help you need and some peace in your heart.

 

I think you all the time, the troubles that you've shared over the years and how you worked through them, and how they've helped me immensely and so many others. When I had a particularly hard day this week, I even thought of getting in my car and driving to Ohio. Isn't that funny? I reached the end of my rope, felt completely hopeless, and thought, "OhE could help me get through this." See, you are definitely not alone, and I always want to know how things are going with you.  :grouphug:

Oh my goodness, you are so sweet!  And I'd LOVE it if you came here!  :)  

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   Cognitive rigidity, say ds saying he didn't want veges in his pasta sauce today because sauce should be SMOOTH.  I look at that, freak out, seeing him digging in his heels FOREVER (because he has been trying to do this with other things), and I start into the flexibility discussion.  Someone else in the house says oh, no biggee, LOTS OF KIDS ARE PICKY AT THAT AGE, HE'LL GROW OUT OF IT.  So will he or won't he?  Can a person on the spectrum have rigidity that he grows out of miraculously at say age 12, or does it ALWAYS lead to entrenched rigidity (without instruction on flexibility) because that's (duh) the definition of spectrum?  A more typical or even cognitively rigid or picky ADHD child *would* grow out of it as they mature.  Will a spectrum dc? Is that even a statistical probability?  

 

My DD is very much a Jekyll or Hyde when it comes to flexibility. Most of the time she rolls with the punches. Schedule changes don't seem to faze her and neither do staffing changes at school or therapy. She's my least picky eater out of the three.

 

BUT when she has a certain idea in her head about the way something ought to be and she isn't able to realize that vision, she'll tantrum in a way that is not normal for a 6 y.o. We had an ABA session a few weeks ago at a park we hadn't visited in several months. In the interim, the city had replaced the sand underneath one of the play structures with wood chips. They had left a sandbox for the kids to dig in but it was in a different part of the park. DD had an epic tantrum about not being able to dig in the sand underneath the play structure the way she had previously been able to do. It went on for probably 45 minutes and I felt like I was wearing a sign reading "World's Worst Mom". DS was with us and he was so embarrassed, poor kid. But I couldn't give in because that would've reinforced the tantrumming. Eventually, the ABA therapist and I got her to calm down.

 

Is the tantrumming part of having autism? Or is it just that she's got a developmental delay and functionally she's a 3 y.o. trapped in a 6 y.o.'s body? If she really were 3, I wouldn't consider the tantrumming unusual.

 

There's also the giftedness/perfectionism/overexcitabilities angle that I'm pretty darn sure is in the picture but the $64k question is how to tease that apart from the SN's. If I were marooned in a place where I had difficulty speaking & understanding the language, I'd find that very frustrating and it would probably make me even more short-tempered than I already am.

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Hello, friend! I've been away from my computer, but now I want to respond to a few comments in a couple of your posts.

 

There's no pow-ing this one.  When this happens, our lives change.  Gone will be the little pristine image of me and my tag-along, cute, merely dyslexic boy.  Way more complicated.  But that's ok, I'm getting there.  Just hard to wrangle and advocate and get changes and fight the crowd who can't see it, who don't want to help.  I think my new line is going to be "I didn't ask you to see it; I just asked you to help. I didn't ask if you saw it; just help me."  Hmmph, it hadn't occurred to me I could pull that line.  I just think I'm going to get the "well I can't see it..." thing.  Whatever, jump. Why do people feel they have the RIGHT to dispute? Whatever.  Whatever it is, it IS.

 

I met up with somebody this week who sees ds occasionally (once or twice a year), and she commented that that was the FIRST TIME ds had ever spoken to her.  Then of course he promptly stopped, lol.  But point is people are noticing and they don't know what to make of it.  They don't have a word, can't put their finger on it, but he stands out.  So maybe it's not totally invisible but it's unfamiliar and hard to understand?  I don't know. This will just be really different.  With dd I've encouraged her *not* to say her label, because it's not socially acceptable in our circles and predisposes you to idiotic bias and assumptions.  With ds, I think it has to be the total inverse; I think we're going to have to use the label. Assuming that's what happens next week, obviously.

 

It's been a year since DS received his NVLD diagnosis. When DH and I walked out of the NP office that day, I turned to him and said that I had been expecting to finally get all the answers to our questions, but instead it was just the starting line. Yes, we had a new understanding, but one that brought a whole new set of questions, plus the knowledge that he has a lifelong disability.  It really hit me that this was a diagnosis that would affect him forever. It was no longer just a matter of us knowing and understanding his issues better, but the scope of what it meant for DS over his life.

 

About using the label -- now that we are moving, we're going to have to make a lot of decisions about that. Who do we tell, and in what detail? When will it be beneficial for someone to know, and when will it cause them to treat him as "other" in an unhelpful way? And, in fact, do we tell DS about his diagnosis, and when? Strangely enough, he asked me within the last month if he has ADHD and said he never knew that, even though he has been taking meds for it for a year and has sat through every doctor's appointment discussing it. Somehow it just flew over his little head. I can't remember now if we actually sat him down and said, "You have ADHD and this is what it means." I can see that we are going to have to be very intentional about teaching him about himself. So we have to decide when we give him the labels about himself. He's not ready yet, I think, for all of it.

 

Yes, there's a bit of that trauma and grief.  But I like him so much, it's not terrible.  It's just more the complication than anything.  And the invisibility of it, that people will have opinions or not treat him right or dispute and I'll have to punch them.  I really don't want to hurt my hands doing it.

 

(I'm joking. I would never, or almost never, punch anyone.)

 

Yes about the invisibility. Except not. DS has always been hard to pigeonhole, because at times he comes across as neurotypical. And at other times his quirkiness or social awkwardness stands out. But it's that way even with his ADHD. Some people would be surprised to know he has it, because he can come across as very quiet and mellow in groups (this is due to anxiety and introversion, I think), but at other times he is extremely hyper and out of control. I think each interaction with our kids gives others just a snapshot of what they are like in that moment. It's never a complete picture. Not even for the NPs (I think ours made a mistake on one thing) or their outside teachers or therapists, because they only know them within a particular context. Not even for me, because I don't get to see him in Sunday school or in gymnastics class.

 

 I thought it would be all b&w, but that's how it is, where some days you're in the no way and others it's way obvious.  His SLP is flabbergasted.  Chew on that one.

 

Yes. Sometimes I totally see it. Sometimes DS seems more NT to me and I think, well maybe not. And then the next day I totally see it again.

 

THIS.  And what's so weird is the sources!  Concerned grandparents you expect to be in denial, but a speech therapist???  What benefit is there to that??  Why act like just because he's known you since he was two and has learned appropriate behavior with you that he's therefore appropriate EVERYWHERE and with EVERYONE???

 

Ok, here's an odd question to anyone who wants to bite.  Cognitive rigidity, say ds saying he didn't want veges in his pasta sauce today because sauce should be SMOOTH.  I look at that, freak out, seeing him digging in his heels FOREVER (because he has been trying to do this with other things), and I start into the flexibility discussion.  Someone else in the house says oh, no biggee, LOTS OF KIDS ARE PICKY AT THAT AGE, HE'LL GROW OUT OF IT.  So will he or won't he?  Can a person on the spectrum have rigidity that he grows out of miraculously at say age 12, or does it ALWAYS lead to entrenched rigidity (without instruction on flexibility) because that's (duh) the definition of spectrum?  A more typical or even cognitively rigid or picky ADHD child *would* grow out of it as they mature.  Will a spectrum dc? Is that even a statistical probability?  

 

Two things. First, the OT we worked with basically told me on the first day that she thought many kids with ADHD were really misdiagnosed and had SPD instead. Addressing the SPD issues would take care of the attention issues. And she told me upfront that she was anti-meds. DS had just started meds for his ADHD and they were LIFE CHANGING for him. So I didn't see eye to eye with her on all things. And I had to remind myself that she saw only a snapshot of my son, not the whole picture. I didn't have to agree with her on all things.

 

I can see where your son's speech therapist, who has worked with him for years, would feel that she has a better perspective than a psych who only has worked with him for a bit. But in reality, she only sees a snapshot of him, too. I don't know if she will keep bringing it up that she disagrees with the possible diagnosis, but if she does, you might just need to decide not to continually discuss it with her. Pass the bean dip! Don't let it get you down or make you second guess what you have learned from other experts. You get to take the snapshot of information about your son that she has to offer you and add it to the snaps from everyone else to make a collage that best pictures the entirety of your son.

 

Even better, your son will build his own collage of snapshots as he gradually grows in understanding of himself over his life. The information that you are gathering now will help you to be a more effective teacher and parent for him, so for now the information is for YOU. But he will only be a child for a short time, and all of this will help him eventually grow into an adult who (hopefully) understands his own strengths and weaknesses and is therefore able to grow into the man that God has always intended him to be. God has a plan for him, and he chose you to be in his life, guiding him in the way that he should go. Your son is blessed to have such a strong and loving advocate.

 

Secondly, about the rigidity. I don't know the answers, but I have the same questions and concerns about my son. What is embedded in the spectrumy behavior and just has to be accepted and/or accommodated, and what can be changed or improved over time? I'd love answers, but I suspect we will only find them over time.

 

It was sort of the inverse of what you'd think!  I had walked away from the whole question, thinking just accept what the big name psych said.  So then the school psych had his eyebrows up and said our explanations were incomplete and then the next person (social skills group leader) said we needed a 2nd opinion.  I totally was NOT looking for this.  We just sorta bought the lines the psych gave us and had decided to live with it.  It was the IEP process for the disability scholarship, ironically enough, that pushed this whole thing.  Go figure.

 

 

Interestingly, it was also school personnel that spurred us to seek a NP evaluation. When we applied to a private Christian school last spring, the evaluator let me know in a very strong (but polite and pleasant way) that we should have him evaluated. She had only spend 90 minutes with him, but she could see something there. Actually, that experience was painful to me, because the school refused to enroll him, but at the same time, I'm grateful, because the heartbreak pushed us to finally seek some answers. If she could work with him for less than two hours administering the Woodcock Johnson and see the non-NT red flags, I could no longer tell myself that he was just kind of mildly quirky and would success in a kind of mildly quirky way through life. We needed to identify his issues and deal with them in order to help him become the best self that he can be.

 

 

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Thanks Story, that's exactly where it's at.  

 

Well the excitement starts in two hours, first with another OT eval, then lunch, then psych 3.  Tie breakers, lol, love it. That's still cracking me up, a little humor in an an otherwise really not humorous situation.  

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Hi Elizabeth, I have only been able to peek in here and there so I've kind of lost the thread of what's going on with this eval. Is your ds seeing the guy who did the evaluation for your dd that you found so helpful? It sounds like you're possibly looking at a spectrum diagnosis? You've had your son in intervention since he was a little guy and it certainly sounds like he's a complex little guy. Because of the complexity, I would not get overly hung up on the labels that get attached to the descriptions, except in relation to their helpfulness for getting services. But as complete descriptors of who he is or predictors of future function, not so much.

 

You know this already, but on one hand keep yourself eager to learn what you can about strengths and weaknesses in the various areas of cognitive function: auditory and visual processing, attention, memory, executive function, etc., and the meaning for intervention with his particular combination of traits. On the other hand, your son is only 6yo and he's got a lot of years of development left. The labels that apply when he is 18 or 20 years old may be different from what gets applied this week. You are engaged in intensive intervention and that will give your son many advantages that lots of complex kids never get. But don't forget to relax a little and not fret over every red flag in the mix.

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...

 

Ok, here's an odd question to anyone who wants to bite.  Cognitive rigidity, say ds saying he didn't want veges in his pasta sauce today because sauce should be SMOOTH.  I look at that, freak out, seeing him digging in his heels FOREVER (because he has been trying to do this with other things), and I start into the flexibility discussion.  Someone else in the house says oh, no biggee, LOTS OF KIDS ARE PICKY AT THAT AGE, HE'LL GROW OUT OF IT.  So will he or won't he?  Can a person on the spectrum have rigidity that he grows out of miraculously at say age 12, or does it ALWAYS lead to entrenched rigidity (without instruction on flexibility) because that's (duh) the definition of spectrum?  A more typical or even cognitively rigid or picky ADHD child *would* grow out of it as they mature.  Will a spectrum dc? Is that even a statistical probability?  

 

I'm going to bite on this quickly. I have a few picky eaters who have ventured on to try new things with encouragement but who at your son's age were picky. Your son's response of telling more specifics of why he doesn't want to eat the veggies sounds more intelligent than children his age sound. It's almost like a food critic, "I found the texture of the sauce mismatched with the pasta. The cream sauce should have been smoother, because the soft but chunky texture of the vegetables in the sauce conflicted with the al dente texture of the rigatoni." 

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Sorry to be hyper-literal, but with his hypo-sensitivity he's not likely to be a good food critic.  I'm definitely not.  But I agree with Merry that it's a cerebral/rigidity/mental thing, not so much an absolute sensory line, though there probably is some sensory involved.  Actually we never know what exclusively is what.  His issues with texture before we assumed were due to low oral tone, kwim?  

 

Well tomorrow is another exciting day.  Actually, it should be very interesting, and I'm only curious to know if I'm going along or if it's going to be the two of them.  That should be funny, lol.

 

I'm sure we'll have some better word tomorrow.  

 

Kbutton, did you watch Tootsie yet?  I need something to make me smile.  I was watching Twilight Zone when I got pneumonia, so I've assumed watching it again my make me sick again, hehe.  Stick to funny.  Not sure if I previewed my whole pile of movies for dd's b-day.  I got through Saint George and the Dragon (very funny!), Enchanted (watched that twice), Princess Bride (the theme for the party), Cow Belles (rather funny in parts), not sure if I have any more.  I've been watching MacGuyver with ds, and that is distinctly not funny.  

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Well I watched 9 to 5.  That was hilarious.   :lol:   :lol:

 

Now for day two!  Thanks for the well wishes OneStep.  Just gotta chill and see what happens.  Whatever happens, it won't be dull.  I have a feeling this psych is going to try to surprise him with some things to see what happens...

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Kbutton, did you watch Tootsie yet?  I need something to make me smile.  I was watching Twilight Zone when I got pneumonia, so I've assumed watching it again my make me sick again, hehe.  Stick to funny.  Not sure if I previewed my whole pile of movies for dd's b-day.  I got through Saint George and the Dragon (very funny!), Enchanted (watched that twice), Princess Bride (the theme for the party), Cow Belles (rather funny in parts), not sure if I have any more.  I've been watching MacGuyver with ds, and that is distinctly not funny.  

 

I am going to try to watch it with my Mom this weekend if I don't forget by the time she gets here.

 

If Enchanted is the Amy Adams one, I love that movie! Have you watched Ever After with Drew Barrymore? Retold Cinderella story.

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Yup, I've seen Ever After.  I don't know who Amy Adams is.  The Enchanted I watched was part cartoon, remaining with real people, sort of an over the top Disney spoof.  It was pretty funny.  I ended up watching 9 to 5 last night, and that was HILARIOUS.  Oh my lands, like pee your pants hilarious!!!  If you haven't seen it, hook up the Prime and get it going.  It would be a good follow-up to Tootsie to take you late into the night...  Or two nights...

 

No update really.  We went today, and ds was, as usual, so blisteringly normal out of the box that the psych was totally surprised.  He spent 2 hours with him, nevertheless, talking, doing things, testing, and they came down and did more where I could see.  That got interesting, because basically as ds got more comfortable more things starting happening.  (more typical plan, hyperflexion?, etc. etc.)  So the psych is saying NOTHING.  He said he'll tally, think over what he has, see where it's at, and see us next Monday.  Yes people, next Monday.  And when I asked him even basic leading questions like whether it would bump us from one scholarship to the other he DID NOT BITE.  

 

So there you go.  There is no word on the street, nothing.  I think I'll need more movies.

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No update really.  We went today, and ds was, as usual, so blisteringly normal out of the box that the psych was totally surprised.  He spent 2 hours with him, nevertheless, talking, doing things, testing, and they came down and did more where I could see.  That got interesting, because basically as ds got more comfortable more things starting happening.  (more typical plan, hyperflexion?, etc. etc.)  So the psych is saying NOTHING.  He said he'll tally, think over what he has, see where it's at, and see us next Monday.  Yes people, next Monday.  And when I asked him even basic leading questions like whether it would bump us from one scholarship to the other he DID NOT BITE. 

 

That's what happened when we saw the developmental pediatrician back in fall 2011. She spent several hours testing & observing DD but didn't give any results until the follow-up consultation. I'm pretty sure she had a preliminary spectrum diagnosis in mind by the end of the testing appointment but to be professional she needed to do the full scoring & analysis.

 

Try to keep busy the rest of this week and weekend so you don't drive yourself crazy with the waiting game.

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That's what happened when we saw the developmental pediatrician back in fall 2011. She spent several hours testing & observing DD but didn't give any results until the follow-up consultation. I'm pretty sure she had a preliminary spectrum diagnosis in mind by the end of the testing appointment but to be professional she needed to do the full scoring & analysis.

 

Try to keep busy the rest of this week and weekend so you don't drive yourself crazy with the waiting game.

It was so weird, because the psych came out, said something (making me think no way), and is now hedging.  So I don't know, sigh.  But you're right, I need to go dig in on some projects.  I had started a scrap quilt during the wait on his other evals and never got it done.  I could make tracks on that.  I FINALLY finished the quilting on dd's quilt and just need to turn and sew down the binding.  

 

I'm trying to decide if this is my imagination or if I am viscerally tired from this, kwim?  Like a pall, a whomp, like I drowned and took on too much sea water.

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It was so weird, because the psych came out, said something (making me think no way), and is now hedging.  So I don't know, sigh.  But you're right, I need to go dig in on some projects.  I had started a scrap quilt during the wait on his other evals and never got it done.  I could make tracks on that.  I FINALLY finished the quilting on dd's quilt and just need to turn and sew down the binding.  

 

I'm trying to decide if this is my imagination or if I am viscerally tired from this, kwim?  Like a pall, a whomp, like I drowned and took on too much sea water.

It is not your imagination.  This process can be extremely energy-sucking.  (((hugs)))

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If it makes you feel any better at all, my spectrum kiddo gets more spectrum-y in some ways when he's more comfortable. In other ways, he's more spectrum-y in novel situations. it depends. Our tutors are seeing more of the comfortable kid right now, and that's when stuff like "helping" them whether they want it or not and not taking no for an answer come out more. 

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If it makes you feel any better at all, my spectrum kiddo gets more spectrum-y in some ways when he's more comfortable. In other ways, he's more spectrum-y in novel situations. it depends. Our tutors are seeing more of the comfortable kid right now, and that's when stuff like "helping" them whether they want it or not and not taking no for an answer come out more. 

Hmmm, that's interesting.  

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The Enchanted I watched was part cartoon, remaining with real people, sort of an over the top Disney spoof.  It was pretty funny. 

 

Yes, this is the one. I love it. 

 

9-5 I will have to look up, but Dolly Parton is ringing a bell...if so, it's sure to be funny.

 

Comedy is not my primary genre (I am an INTJ and take myself way too seriously, after all), but Move Over Darling with Doris Day and James Garner is really good. I also really like Dan in Real Life, though that is a newer movie. 

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I'm trying to decide if this is my imagination or if I am viscerally tired from this, kwim?  Like a pall, a whomp, like I drowned and took on too much sea water.

 

"It's a marathon, not a sprint" may be cliched, but it is very true.

 

It can be very overwhelming when I think about the future so what I'm trying to do is to focus on one little bite of the elephant at a time. Getting DD her hearing aids. Getting the SSI documentation together and the application submitted. Working through LiPS and Linguisystems C.A.S.T. to hopefully get those consonants straightened out.

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Here's hoping you get feedback from this psych that adds clarity to your understanding of your little guy. You know all about how evaluators typically hold things close to the chest until they analyze the data. Maddening but better to have someone be thoughtful and thorough than to speak off the cuff.

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