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#101 Storygirl

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Posted 24 May 2017 - 10:11 PM

:grouphug:  It can take some time to sink in. I remember feeling kind of stunned after DS's evaluation report. We were told that it is helpful to have ADHD meds in the system for testing, too. I'm surprised she couldn't run the CTOPP; it's good you have somewhere else to go for that, because it should give you helpful information.



#102 Storygirl

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Posted 24 May 2017 - 10:22 PM

Ballet can be great for kids with ADHD, or it can be frustrating. It really depends upon the teacher, so it would be good to talk to the studio to see how they address attention issues. Real ballet training does not start until age 8 -- before that it is pre-ballet, or creative movement. So she could wait a few years and not be behind. Or she could start in pre-ballet classes and (hopefully) be in a fun class that does not yet require the students to be so perfect.

 

I don't mean perfectly behaved, but having perfect control over what their body is doing. Ballet really is a mental exercise as much as a physical one, so it can be great training for developing attention.

 

It also relies very heavily on working memory, because dancers have to remember the combination of movements, as well as how to execute them. Often kids with ADHD also have lower working memory. DD11 (dyslexic and ADHD) took dance for quite a few years, and she had some trouble remembering what to do. I also think she had some difficulty with knowing left and right at that age.

 

Dance studios follow the school year schedule, so they will be starting classes in September, usually. You may be able to find a summer ballet camp at a studio for her to go to, to see if she might like it as much as she thinks. That can also give you a sense about whether the studio will be willing to work with her.



#103 Southern Ivy

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Posted 25 May 2017 - 06:42 AM

Ballet can be great for kids with ADHD, or it can be frustrating. It really depends upon the teacher, so it would be good to talk to the studio to see how they address attention issues. Real ballet training does not start until age 8 -- before that it is pre-ballet, or creative movement. So she could wait a few years and not be behind. Or she could start in pre-ballet classes and (hopefully) be in a fun class that does not yet require the students to be so perfect.

 

I don't mean perfectly behaved, but having perfect control over what their body is doing. Ballet really is a mental exercise as much as a physical one, so it can be great training for developing attention.

 

It also relies very heavily on working memory, because dancers have to remember the combination of movements, as well as how to execute them. Often kids with ADHD also have lower working memory. DD11 (dyslexic and ADHD) took dance for quite a few years, and she had some trouble remembering what to do. I also think she had some difficulty with knowing left and right at that age.

 

Dance studios follow the school year schedule, so they will be starting classes in September, usually. You may be able to find a summer ballet camp at a studio for her to go to, to see if she might like it as much as she thinks. That can also give you a sense about whether the studio will be willing to work with her.


Thank you! This is good information to pass along to DH. He's very facts oriented. So, this will help him feel like it's not just "mom wants her in this to look cute." 


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#104 Southern Ivy

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Posted 25 May 2017 - 09:26 AM

Appointment with the doctor on Wednesday and my boss said I could go ahead and cut back to 20 hours next week. Woohoo! 


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#105 OhElizabeth

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Posted 25 May 2017 - 09:54 AM

My ds does swim AND gymnastics. Do both would be my advice. :)

The gymnastics might scratch her itch instead of the ballet. Try it, try both. Around here summer swim lessons can be day or evening and gymnastics is evening. It works to do both.

Swim lessons are short, where gymnastics will quickly move to longer 1-3 hours). Gymnastics will be more intense sensory input and develop higher self regulation. They'll set up stations and have them work and rotate and stay on task. You'll LOVE what gymnastics will do for her. I've kept my ds in year round swim lessons three years now, so I'm in favor of swim, sure. Just saying you're really going to like what gymnastics could do for her.

Edited by OhElizabeth, 25 May 2017 - 09:55 AM.

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#106 Moved On

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Posted 25 May 2017 - 11:36 AM

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Edited by Moved On, 12 August 2017 - 07:25 PM.

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#107 Southern Ivy

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Posted 25 May 2017 - 02:13 PM

My ds does swim AND gymnastics. Do both would be my advice. :)

The gymnastics might scratch her itch instead of the ballet. Try it, try both. Around here summer swim lessons can be day or evening and gymnastics is evening. It works to do both.

Swim lessons are short, where gymnastics will quickly move to longer 1-3 hours). Gymnastics will be more intense sensory input and develop higher self regulation. They'll set up stations and have them work and rotate and stay on task. You'll LOVE what gymnastics will do for her. I've kept my ds in year round swim lessons three years now, so I'm in favor of swim, sure. Just saying you're really going to like what gymnastics could do for her.

 

Sounds great!! We are definitely going to explore our options. John is so facts based that he's all "Swim can save her life. Ballet can't." lol And, I definitely agree that she needs to know how to swim. So, she's for sure doing that at the Y this summer. As for the rest, I think I've convinced him how important it is for her to be in something that gets her energy out AND that she's good at. He's coming around slowly but surely.  ;)

Southern Ivy, as someone who always got signed up for what my father chose for me, never what I wanted, and as someone who lived and breathed ballet practically from the moment I was born but was never given the opportunity, I just want to say, whatever you do, at least give your daughter the opportunity to explore what she has chosen.

I wish you and your girl all the best,

Marie

Awww, thank you. Yes, I am most definitely advocating for her to be able to choose. She may get in and hate it, but I definitely want her to be able to choose. I mentioned above that John is very facts based ("Swim can save her life"), so the rest seems frivolous. But, living in a small town with little to no homeschooling community, she needs something. He'll come around eventually. 


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#108 Moved On

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Posted 25 May 2017 - 06:11 PM

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Edited by Moved On, 12 August 2017 - 07:25 PM.

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#109 Moved On

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Posted 25 May 2017 - 10:53 PM

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Edited by Moved On, 12 August 2017 - 07:26 PM.


#110 Southern Ivy

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Posted 27 May 2017 - 05:25 PM

Southern Ivy, in case it wasn't obvious, what I was trying to say is that anyone can teach your girl how to swim. If dad is a good swimmer and can work with your girl, he can teach her himself. If she will not be using swimming competitively, I honestly don't see the need for paid lessons. She is also quite young. I taught myself to swim around my 8th birthday. And my father did show me a few things when I asked him for example to show me how to dive properly, etc. Not everyone can teach your girl ballet though ;) That's my way of thinking anyway!

She has actually asked to take swim lessons (some of her friends take them) and the Y here has really good instructors, plus it's not too expensive. DH and I can swim, but I don't know how I feel about either of us teaching her. ha
Ballet at the Y isn't expensive either and while I don't see that being the best source of lessons, it's hopefully going to give us an idea if it's something she will like.
DH has agreed to both now, so I think we'll do swim this summer to get the basics down, then move on to ballet. 


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#111 Moved On

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Posted 27 May 2017 - 06:08 PM

Ballet at the Y isn't expensive either and while I don't see that being the best source of lessons, it's hopefully going to give us an idea if it's something she will like.

It's a good starting point :)

Hope both the swimming and ballet go well for your girl :)
 

Edited for privacy.


Edited by Moved On, 12 August 2017 - 07:27 PM.

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#112 Southern Ivy

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Posted 19 June 2017 - 07:22 PM

We went to the developmental eye doctor last week. I wish I had gone to him first. He was amazing and did so great with her. He said that her visual acuity and visual memory (and something else) were just fine. He thinks that, based on what he's seen before, that she likely has an auditory processing disorder, not a visual processing disorder. But, obviously, he can't diagnose that. He just advised that we consider having her tested when she's older. His office specializes in vision therapy, so I feel pretty comfortable with his opinion. He gave us some good techniques for teaching her the alphabet and told me the ways they could help in the future with reading via their vision therapy, but he was honest and said that right now, he would just encourage us to do the techniques at home and to contact him if/when she needs more assistance. 

Dd has been off of food dyes for a good 3 weeks and it's amazing the change in her already. Her logic and vocabulary has completely changed. She's still quite hyper, so I'm confident in the ADHD diagnosis. However, the more I read the neuropsych's report and thought about how she allowed her frustration to show in regards to my daughter's actions, the less I felt it truly reflected what my daughter can and can't do. My mom was furious when I relayed some of the things I observed. I probably should have left, but I was thinking out of fear/uncertainty instead of logically. 

A couple days after we had her tested with the neuropsych in May, I received an email from another neuropsych that I had reached out to. He works with the dyslexia center in the neighboring city. He was willing to test her again and give us a second opinion. His testing is going to be twice as long, so I'm taking snacks and I'm sure he'll give her a break. I'm hoping that being off dyes and spending the summer at home in a controlled environment (and not around some of the wilder students at preschool) that she will be able to provide a more accurate sample of what she does/doesn't know and can/can't do. 
We go to the new neuropsych on July 31. 
 


Edited by Southern Ivy, 19 June 2017 - 07:28 PM.

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#113 Moved On

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Posted 19 June 2017 - 10:17 PM

nm


Edited by Moved On, 12 August 2017 - 07:29 PM.

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#114 OhElizabeth

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Posted 19 June 2017 - 10:28 PM

I'm sorry you were so frustrated with your first psych eval. What is this psych going to add or do differently? I ask, because I really think that's an important piece of information when you've got someone saying he thinks she's eventually going to get an APD diagnosis. She's too young to actually GET the diagnosis, and going to another psych isn't going to help you. Or at least, I'm just suggesting you slow down and clarify what you think it will help, kwim?

 

Do you feel her IQ score was really invalid? Big whoop. I mean, of all the things, that may be so the least of your concerns right now. I would want answers on her language, and a neuropsych only does the CELF and basic stuff. There are much more detailed tests, and for that you need an SLP. 

 

It's possible that you're going to find the intersection of her behavior and language make a big difference. If you can't understand things, if you aren't processing, your behavior is going to be really whack, kwim? 

 

There is an APD screening tool (TAPS) that they can run at her age. It's half stuff she would fail if she's dyslexic. I know, because my ds did. However I'm wondering if a full SLP eval, with someone who would really slow down and dig in, could find some things. "Teach her the alphabet" is way short of what you could be doing right now I think. I would be checking her vocabulary, her grammar development, her phonological processing, and I would be doing things that really work on all this. 

 

She's still a fuzz young to get a dyslexia diagnosis. You've got this optometrist saying he thinks APD. If he thought it was dyslexia (a MUCH more common diagnosis), he would have said so. What you might do is start reading about APD and take your time and dig in on this. It can have so many facets and associated weaknesses. 

 

I hate disabilities because you find them young and then are like ok, what do I do NOW? Do I watch the train wreck? That's literally how it feels. So I'm saying ask the right questions, like what would prevent the train wreck? Start a thread here on the board about APD and ask what aspects are involved or could be involved and what you can do to avoid train wrecks with them.

 

Has she had an OT eval? I'm specifically thinking for retained reflexes. When the ADHD is THAT severe, you really, really, really, really want to be beating the bush on retained reflexes. Again, I'm not trying to say another psych eval isn't useful. Maybe that woman was hack and screwed you and missed stuff. I've had my kids through plenty of them. My ds saw, um, well a whole bunch of psychs the year he got diagnosed. And you know what, none of those psychs changed our lives. What changed our lives was the PT who was good with retained reflexes. So you might not want to burn all your money on psychs, even if that lady did a terrible job. I think you're likely to get better, more reliable scores by waiting a year, putting her on the ADHD meds, and getting her body more stabilized. You may need some behavioral work. You probably have reflexes to integrate. Rather than blowing your wad NOW, you might want to hold onto it, do some things to get her in a better place, THEN re-eval.


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#115 Southern Ivy

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Posted 20 June 2017 - 06:35 PM

I'm sorry you were so frustrated with your first psych eval. What is this psych going to add or do differently? I ask, because I really think that's an important piece of information when you've got someone saying he thinks she's eventually going to get an APD diagnosis. She's too young to actually GET the diagnosis, and going to another psych isn't going to help you. Or at least, I'm just suggesting you slow down and clarify what you think it will help, kwim?

 

Do you feel her IQ score was really invalid? Big whoop. I mean, of all the things, that may be so the least of your concerns right now. I would want answers on her language, and a neuropsych only does the CELF and basic stuff. There are much more detailed tests, and for that you need an SLP. 

 

It's possible that you're going to find the intersection of her behavior and language make a big difference. If you can't understand things, if you aren't processing, your behavior is going to be really whack, kwim? 

 

There is an APD screening tool (TAPS) that they can run at her age. It's half stuff she would fail if she's dyslexic. I know, because my ds did. However I'm wondering if a full SLP eval, with someone who would really slow down and dig in, could find some things. "Teach her the alphabet" is way short of what you could be doing right now I think. I would be checking her vocabulary, her grammar development, her phonological processing, and I would be doing things that really work on all this. 

 

She's still a fuzz young to get a dyslexia diagnosis. You've got this optometrist saying he thinks APD. If he thought it was dyslexia (a MUCH more common diagnosis), he would have said so. What you might do is start reading about APD and take your time and dig in on this. It can have so many facets and associated weaknesses. 

 

I hate disabilities because you find them young and then are like ok, what do I do NOW? Do I watch the train wreck? That's literally how it feels. So I'm saying ask the right questions, like what would prevent the train wreck? Start a thread here on the board about APD and ask what aspects are involved or could be involved and what you can do to avoid train wrecks with them.

 

Has she had an OT eval? I'm specifically thinking for retained reflexes. When the ADHD is THAT severe, you really, really, really, really want to be beating the bush on retained reflexes. Again, I'm not trying to say another psych eval isn't useful. Maybe that woman was hack and screwed you and missed stuff. I've had my kids through plenty of them. My ds saw, um, well a whole bunch of psychs the year he got diagnosed. And you know what, none of those psychs changed our lives. What changed our lives was the PT who was good with retained reflexes. So you might not want to burn all your money on psychs, even if that lady did a terrible job. I think you're likely to get better, more reliable scores by waiting a year, putting her on the ADHD meds, and getting her body more stabilized. You may need some behavioral work. You probably have reflexes to integrate. Rather than blowing your wad NOW, you might want to hold onto it, do some things to get her in a better place, THEN re-eval.

I've had a horribly long and exhausting day, but I will respond to this tomorrow. 
I do appreciate how you cut to the chase. You give me a lot of good things to consider. :) 


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#116 Storygirl

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Posted 20 June 2017 - 06:46 PM

I agree with OhElizabeth. If you wait a year, you might find new evaluations more helpful. One important consideration is that psychs cannot rerun tests within a certain timeframe, so the new NP will not be able to redo anything the previous person did. He can run different tests, but not the same ones. So ask what tests he would run and how they would give you different information before you decide to pay for additional screenings.

 

I also disagree with OhElizabeth, where she says to trust the optometrist about his opinion about dyslexia. Because he is not a dyslexia expert at all! It is just his opinion, and I wouldn't give it a lot of weight. Auditory processing weaknesses can go along with dyslexia, so it doesn't mean that the presence of one of them means you don't have the other.

 

Because she is showing patterns that suggest learning disabilities of some kind are present, I think you will find that you will end up getting further evaluations when she is older anyway, as additional things become concerns.

 

Why do you think it's worth getting more evaluations now? Could the NP just look over the other one's report and give you some feedback on the tests already taken, for a lower fee, instead of running new tests?


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#117 OhElizabeth

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Posted 20 June 2017 - 10:16 PM

I also disagree with OhElizabeth, where she says to trust the optometrist about his opinion about dyslexia. Because he is not a dyslexia expert at all! It is just his opinion, and I wouldn't give it a lot of weight. Auditory processing weaknesses can go along with dyslexia, so it doesn't mean that the presence of one of them means you don't have the other.

 

 

Oh I totally agree with that! I just thought it was interesting or noteworthy that where it might have been any easy thing to go along with a more common diagnosis (dyslexia), he was instead noticing other things. But I agree, any time ANYONE is suggesting things out of their specialty it needs to be taken with a huge, huge grain of salt. I just thought it was interesting. It was one of those things that made me wonder what he was seeing in the session that made him think that. Something must have happened, because APD is really not a kind of diagnosis that you just whip out of the hat or think of commonly, like a top of the line, most probable thing to be going on. So it made me wonder what he was noticing. It would actually be something to ask if you see him again.

 

And yes, we've had dev. optom. say dorky and totally incorrect things about dyslexia. So I totally agree to be cautious there and wait on data.


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#118 OhElizabeth

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Posted 20 June 2017 - 10:25 PM

Because she is showing patterns that suggest learning disabilities of some kind are present, I think you will find that you will end up getting further evaluations when she is older anyway, as additional things become concerns.

 

You (Ivy, op) can ask around and really get them to be honest. My ds was diagnosed with all 3 SLDs at newly 6, but he had significant, significant discrepancy based on IQ. Like Story is saying, even if they screwed it up they're not going to re-run that IQ test. They might run a non-verbal maybe, but they won't rerun a test that soon. So really, gifted IQ with SLDs, MAYBE they'd diagnose some at 6. But even then, you can have a super bright kid where it's CRAZY OBVIOUS and the psych is declining at 6. It does happen. 

 

For APD, around here they won't really run the SCAN3 until they're 7. Now the audiologist at the univer where I took my kids did a dab with ds at 6, but that's not normal, kwim? They really want 7. And the private ones here want age 7 + recent psych eval (last 6 months) + recent SLP eval. 

SaveSave


Edited by OhElizabeth, 20 June 2017 - 10:28 PM.

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#119 Southern Ivy

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Posted 21 June 2017 - 01:33 PM

In regards to wanting the 2nd opinion, it's just me feeling like, aside from the ADHD diagnosis, that we didn't get an accurate picture. I guess I feel/felt like the little girl that took that test wasn't MY little girl, you know? She was being an absolute turd (and I never use that to describe my kid, but that day...that's the only descriptor!) She was giving stupid answers when she KNOWS the answer -  
"If you have a mom and a sister, they are your __________?" "CHERRIES!!"  (I asked her this on the way home and she said, "Well, of course, they are your family." 
"What is this shape?" (a square - a shape she draws and identifies a lot) "I've never been taught shapes. I don't know." 
And the list went on. I just sat there mortified because she was horrid and I couldn't step in to make her straighten up and give real answers. 

I mean, this same little girl just used "banished" in a sentence! I KNOW she is more intelligent than that test let on. 

I do see the wisdom in what you both are saying. I also didn't realize that they wouldn't/couldn't do the same tests within a certain time period. I spoke with my husband and he is ok with postponing, so I will cancel the appointment. My personality is to find an problem, jump in and fix it or find someone who can. So, this waiting game is killing me. 
I mean, Elizabeth, you said: 
I hate disabilities because you find them young and then are like ok, what do I do NOW? Do I watch the train wreck? That's literally how it feels. 

YES!! I just feel like I'm sitting here doing nothing and it's driving me crazy. Waiting 3 years to officially figure out what is up? Kill me now. haha 

 

There is an APD screening tool (TAPS) that they can run at her age. It's half stuff she would fail if she's dyslexic. I know, because my ds did. However I'm wondering if a full SLP eval, with someone who would really slow down and dig in, could find some things. "Teach her the alphabet" is way short of what you could be doing right now I think. I would be checking her vocabulary, her grammar development, her phonological processing, and I would be doing things that really work on all this. 

 

Has she had an OT eval? I'm specifically thinking for retained reflexes. When the ADHD is THAT severe, you really, really, really, really want to be beating the bush on retained reflexes. Again, I'm not trying to say another psych eval isn't useful. Maybe that woman was hack and screwed you and missed stuff. I've had my kids through plenty of them. My ds saw, um, well a whole bunch of psychs the year he got diagnosed. And you know what, none of those psychs changed our lives. What changed our lives was the PT who was good with retained reflexes. So you might not want to burn all your money on psychs, even if that lady did a terrible job. I think you're likely to get better, more reliable scores by waiting a year, putting her on the ADHD meds, and getting her body more stabilized. You may need some behavioral work. You probably have reflexes to integrate. Rather than blowing your wad NOW, you might want to hold onto it, do some things to get her in a better place, THEN re-eval.

Would an audiologist do the TAPS?
I know I can get the CTAPP done at the dyslexia center. I guess I could ask about the TAPS as well. 

We have a busy July, but I'll be getting some evaluations with the SLP and the OT set up. With the SLP, I've only ever been for some initial sound problems. Are they able to test the vocabulary and grammar development? (I'm noticing some bad grammar stuff, but I'm not sure if it's age appropriate or not)

No OT eval yet. I mentioned it to my doctor and she didn't seem to think it was necessary. But, I'm sure she was thinking in broader terms. I've looked up retained reflexes, but I'm not sure I completely understand their implications. Are you able to explain them more to me? 

 

I also disagree with OhElizabeth, where she says to trust the optometrist about his opinion about dyslexia. Because he is not a dyslexia expert at all! It is just his opinion, and I wouldn't give it a lot of weight. Auditory processing weaknesses can go along with dyslexia, so it doesn't mean that the presence of one of them means you don't have the other.

 

Because she is showing patterns that suggest learning disabilities of some kind are present, I think you will find that you will end up getting further evaluations when she is older anyway, as additional things become concerns.

 

With the optometrist, I know he's not an expert, but his office is focused on vision therapy and have a lot of dyslexic and some APD patients that they help with reading and other vision issues. So, I felt like if he didn't automatically say "I really suspect dyslexia", but he mentioned another possibility, then he might be on to something. I am definitely keeping it in the back of my mind. He kind of confirmed what I've been suspecting anyway - APD or phonological processing disorder. 



#120 Moved On

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Posted 21 June 2017 - 02:26 PM

:grouphug: :grouphug: :grouphug:
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#121 Storygirl

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Posted 21 June 2017 - 06:26 PM


 

With the optometrist, I know he's not an expert, but his office is focused on vision therapy and have a lot of dyslexic and some APD patients that they help with reading and other vision issues. So, I felt like if he didn't automatically say "I really suspect dyslexia", but he mentioned another possibility, then he might be on to something. I am definitely keeping it in the back of my mind. He kind of confirmed what I've been suspecting anyway - APD or phonological processing disorder. 

 

Well, dyslexia is a phonological processing disorder.


 



#122 Southern Ivy

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Posted 21 June 2017 - 07:13 PM

Well, dyslexia is a phonological processing disorder.

 

Gah - everything is just interwoven isn't it? 



#123 Storygirl

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Posted 21 June 2017 - 07:33 PM

Yes. When DD was diagnosed with dyslexia, I asked her tutor about testing her for auditory processing. There are a few sounds and words that she says incorrectly much of the time or struggles to say correctly, so I was wondering if she was mishearing them. The tutor said that that kind of auditory processing tends to go along with dyslexia and probably wasn't a separate auditory processing problem.

 

APD or CAPD seems to be a different kind of profile. I suspected DS12 of having APD but testing didn't turn up a problem. His trouble is attending to auditory input, and he misses information, especially in noisy environments. That's more the APD profile, but he wasn't found to have it. He does have inattention and executive function weaknesses (again, enough to cause problems, but not enough to get an ADHD diagnosis), and we've decided that is the root of his auditory inattention.


Edited by Storygirl, 21 June 2017 - 07:34 PM.

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#124 OhElizabeth

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Posted 21 June 2017 - 09:29 PM

In regards to wanting the 2nd opinion, it's just me feeling like, aside from the ADHD diagnosis, that we didn't get an accurate picture. I guess I feel/felt like the little girl that took that test wasn't MY little girl, you know? She was being an absolute turd (and I never use that to describe my kid, but that day...that's the only descriptor!) She was giving stupid answers when she KNOWS the answer -  
"If you have a mom and a sister, they are your __________?" "CHERRIES!!"  (I asked her this on the way home and she said, "Well, of course, they are your family." 
"What is this shape?" (a square - a shape she draws and identifies a lot) "I've never been taught shapes. I don't know." 
And the list went on. I just sat there mortified because she was horrid and I couldn't step in to make her straighten up and give real answers. 

I mean, this same little girl just used "banished" in a sentence! I KNOW she is more intelligent than that test let on. 

I do see the wisdom in what you both are saying. I also didn't realize that they wouldn't/couldn't do the same tests within a certain time period. I spoke with my husband and he is ok with postponing, so I will cancel the appointment. My personality is to find an problem, jump in and fix it or find someone who can. So, this waiting game is killing me. 
I mean, Elizabeth, you said: 
I hate disabilities because you find them young and then are like ok, what do I do NOW? Do I watch the train wreck? That's literally how it feels. 

YES!! I just feel like I'm sitting here doing nothing and it's driving me crazy. Waiting 3 years to officially figure out what is up? Kill me now. haha 

 

Would an audiologist do the TAPS?
I know I can get the CTAPP done at the dyslexia center. I guess I could ask about the TAPS as well. 

We have a busy July, but I'll be getting some evaluations with the SLP and the OT set up. With the SLP, I've only ever been for some initial sound problems. Are they able to test the vocabulary and grammar development? (I'm noticing some bad grammar stuff, but I'm not sure if it's age appropriate or not)

No OT eval yet. I mentioned it to my doctor and she didn't seem to think it was necessary. But, I'm sure she was thinking in broader terms. I've looked up retained reflexes, but I'm not sure I completely understand their implications. Are you able to explain them more to me? 

 

 

With the optometrist, I know he's not an expert, but his office is focused on vision therapy and have a lot of dyslexic and some APD patients that they help with reading and other vision issues. So, I felt like if he didn't automatically say "I really suspect dyslexia", but he mentioned another possibility, then he might be on to something. I am definitely keeping it in the back of my mind. He kind of confirmed what I've been suspecting anyway - APD or phonological processing disorder. 

 

Why do you think, in that moment, she decided to have those behaviors and answer that way? I think you could reframe this, if you wanted. The behaviors the dc exhibits during the testing DO matter and the psych IS watching them. This is a standardized tool, so that psych has seen tons and tons of kids do that test and is watching the patterns of the behaviors, not just the answers.

 

So WHY did she do that? I'm sorry, but you saw her. You just saw a facet of her that you haven't explained yet. I could make some guesses why she did it (anxiety, processing speed, impulsivity, immaturity), but I'm just really curious what your take was on why and what the psych's take was. 

 

Sometimes kids are complex and it takes time for us to understand all their facets. Sometimes bright kids are contradictory, both very capable and with astonishing or surprising deficits. That was her, and the question is WHY she was having that behavior. That's what the psych was there to explain. An IQ score discrepancy, that's something you can solve later. The psych probably would have said something if he thought she really was not even ballparking where she should be. Like when people test my ds and he gives answers like that (and he does), they'll say that was your fun answer now give me your real answer. They aren't shocked by it and know he needs some prompting.

 

So it would be really interesting to you maybe to read through the report from the psych and see if there are clues in there to how s/he interpreted it. Did they diagnose anxiety or a social delay? Did they comment on her behavior during the testing? Usually they'll say something like child is an engaging, bright, active child of such and such age who seemed to participate in such and such way. They'll usually put something about it in their narrative.

 

I had a report once (not from a psych thankfully, but from another high stakes person) where it was astonishing how the person misrepresented my dc. Like I took them around showing them things he had lined up that day (obvious ASD symptom, hello he lined up 100+ Star Trek Catan ships, one by one, very meticulously, totally zoned, really bad day), and literally, I kid you not, they put in the report that he had a wide variety of interests!!!!!!!  

 

:svengo:

 

No mention of repetitive behaviors, stims, him being extremely hard to work with or get to work with you, no mention of cognitive rigidity, NOTHING. Just "seems to have a broad variety of interests" which anyone who actually KNOWS who would have, at that time, considered PREPOSTEROUS.

 

Retained primitive (neonatal, infant) reflexes are extremely common in the alphabet soup of problems world (ADHD, ASD, APD, etc.). You definitely want to check for them. If you really don't think there's any other reason for an OT eval, like she doesn't have hand pain or low muscle tone or coordination issues or anything, then just go on youtube and google them. You can do it that way, sure. And many OTs aren't even trained on them, so you could go through a lot of OTs before you found one who was worth anything for them. But IF she has them and you work on them, it can make a HUGE, huge difference in behavior. In general, there's a strong probability she has some retained. 

 

My ds' behavior calmed down so much as his reflexes integrated that he now no longer tests as ADHD on the tap tap computer tests. 

 

I want to go back to this. Your first psych may have just been a not so very good psych. I get it, totally. However, there could be another angle. What if you've never had your dd in a situation where you realized, OBJECTIVELY, how challenging her behavior really is? I mean, I can spit all I want about the person he's with, but reality is it's MY SON having the behaviors, not the adult. Reality is my ds IS challenging. And so you could back up and really ask what is causing your dd's behaviors to be so challenging. 

 

Notice that your dd didn't even modulate her behaviors when the psych became visibly frustrated. Think about that. That's not typical. So the adult in charge is becoming visibly frustrated, saying things, trying to get your dc to get back on the plan, follow the model, and your dc is not on the group plan, is not caring about the psych's feelings, is not noticing the non-verbals, whatever. Think about it without your protective mom hat on. There could be that other perspective.

 

I've known some pretty provoking ADHD kids.  :lol:  My ds is pretty provoking. I get it. It would be interesting to step back and just try to be objective a minute and wonder WHY your dd wasn't noticing how unexpected her behaviors were and why she wasn't responding to the cues from the adult in charge. It's really telling. It tells you this is behavior that's intrinsic to her, that it wasn't easy for her to go into that setting and have the APPROPRIATE and expected behaviors, that SOMETHING was making it hard for her. Immaturity, anxiety, low processing speed? I don't know. And it means these are behaviors she would have in other settings too, like if placed in a school. And she's young enough that they might cover it a while, sure. But come 1st grade, 2nd grade, the expectations would increase. Is she in other settings for you to see what her behaviors are like? 

 

That's just your rabbit trail. Totally feel free to disagree. I'm just suggesting there could be other ways to view it.

 

Yes, the SLP can run language testing, vocab, etc. There's a vocab test in the CTOPP iirc. Or was that the DAR? (a reading test) I forget, sorry. 

 

My advice is to ask the people when the BEST time is to run these tools. Rather than saying can you run it, tell them her age, what you're seeing, and ask them when the best time would be to run it. 

 

Given that the other testing will require attention and on-task behavior, I think you might consider working on her body and behavior *first* and then doing more evals that require intervention and language. If she goes in to the SLP and does the same thing she did with the psych, you've blown more evals. That's why I was saying take your time, really think through *why* she had those behaviors and what it tells you and what you can do about it. My ds has had speech therapy for 6 years now (since he was 2). We've taken time off here or there, but we've had a lot of time in sessions and a lot of time testing. I can tell you that the behaviors she had with that psych are likely to happen again with the SLP unless you address WHY they're happening. The demands will be very similar, so the behaviors are probably going to recur.

 

Now it's true, I've taken my ds to some SLPs who are really kick butt. Like they expect behaviors, know what to do with behaviors, know how to motivate and get compliance and how to reduce anxiety in a situation with a lot of strategies. Still, he has behaviors. 

 

It's hard. I pray over it a lot to figure out what to do first/next. I don't know if you pray, but I'm just saying it is hard, when you have tons of options and don't know which one to do next or how to prioritize. But you will run out of money trying lots of things and will exasperate your dh. Slow down, reread your psych report, look for clues, and look for what is MOST FOUNDATIONAL that will allow the next step to work better. She's too young to identify everything, but there are things going on now that ARE timely to work on. Behavior (motivation, anxiety, social thinking), retained reflexes, basic auditory eval, basic eye exam, etc., these things are foundational. They'll let the next stuff go better. 

 

Was there anything interesting hidden in your psych report? Processing speed or referrals or recommendations of any kind? Was s/he recommending meds? What did your ped think of that? 

SaveSave


Edited by OhElizabeth, 21 June 2017 - 09:33 PM.


#125 OhElizabeth

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Posted 21 June 2017 - 09:39 PM

Two things, seemingly contradictory. One, Story is so right. You can have pretty significant issues with background noise, etc., and STILL not have it be severe enough to fail the screening and need the full APD testing. My dd is like that. And hers is pretty nasty, definitely an issue. Just makes you sympathetic because that means it's THAT much worse in full APD.

 

Two, ironically, if your dd *is* mishearing or lacking input in situations due to APD, that could drive behaviors. So there's that cyclical problem if you say well wait on behaviors before testing, when maybe the testing shows you what to do to fix the behaviors! 

 

So that's hard. That's when you back up and try to figure out what is causing the behaviors. Around here, audiology at the univ. is SO cheap, it's just an easy recommend for me. Like literally it's $35. 

 

You might end up with kind of a ping pong process. With our ds, we did audiology at newly 6, because we were then going to the psych eval. We wanted to make sure there wasn't a glaring audiological explanation for the symptoms. But we knew when we did it that we might need to go BACK in a year to dig deeper. 

 

You asked about SLP evals. They have a number of tools, like the CASL and the CELF. You might see if your neuropsych ran any language testing. He may have. There's usually a list in the report telling all the tests and tools s/he ran.



#126 OhElizabeth

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Posted 21 June 2017 - 09:41 PM

 

With the optometrist, I know he's not an expert, but his office is focused on vision therapy and have a lot of dyslexic and some APD patients that they help with reading and other vision issues. So, I felt like if he didn't automatically say "I really suspect dyslexia", but he mentioned another possibility, then he might be on to something. I am definitely keeping it in the back of my mind. He kind of confirmed what I've been suspecting anyway - APD or phonological processing disorder. 

 

I'm confused, did he say APD or phonological processing?



#127 Southern Ivy

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Posted 22 June 2017 - 08:00 AM

I'm confused, did he say APD or phonological processing?

He said APD.   (I can see how that sentence was confusing! I meant, he mentioned one of the things I was suspecting.)


I know this isn't all the symptoms of APD, but Riverlyn is all of these. However, she WILL sit for stories if she can see the pictures. 
I also found a list of symptoms of phonological processing (which of course, I can't find now) that had a lot of her struggles as well. It was actually the first thing I suspected. It wasn't until you all brought up APD that I looked into it more and see signs. But, we obviously won't know more until she's tested. 

I have some thoughts on your other post - you really keyed in on some things that I think are very accurate. I'll try to comment on those later. 


Edited by Southern Ivy, 22 June 2017 - 08:01 AM.

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#128 OhElizabeth

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Posted 22 June 2017 - 08:08 PM

Yeah, if that list is what you're seeing, I think getting language testing, hearing testing, and testing for retained reflexes could be really, really good. Some of it is about eliminating things. For instance, the TAPS (test of auditory processing) can be run at her age, and it has stuff that will flag if she's dyslexic (about half) and stuff that won't flag if she's only dyslexic. So my ds flagged on half and not the other half. That would be good info to have! They could test her language development (CELF or CASL), her vocabulary, etc. They can read between the lines and go ok her speech is at this place because she's not discriminating or because she's not hearing or... And you can start to narrow things down. Sometimes, even a negative is helpful, because you're eliminating explanations. 

 

Children will have masking behaviors when they aren't processing well or things aren't working well. Like I don't know if your dd does this, but my dd used to get on 4 legs like a dog a lot. We're like, chick, you're 10/11, time to get up off the floor! Turned out her visual processing was SO bad, with poor visual memory, no depth perception, etc., and it was just safer on the floor! It was her default thing, a safety thing, her mind had done without her even realizing it, because SHE WAS SO BRIGHT. The brain is astonishing with coping mechanisms. Then we did VT and BAM she stopped the dog on the floor thing. Like totally dropped it, never to do it again. It was pretty wow.

 

So to me, any time you're seeing something not IQ appropriate, unusually immature, unusually whatever, I'm gonna wonder what they're masking, what isn't working right. When you do some lower priced evals, like say SLP for maybe $200-300, OT, vision, etc., you're doing things that can give you good data without breaking the bank. 

 

I would be shocked if she doesn't have retained reflexes. You might google it on youtube and try testing them this weekend. That might change things profoundly. I knew a dc once who had astonishing behavior. I'm just gonna read between the lines and guess she had behavior like your dd's. It was pretty astonishing, like NEVER sitting for a story, etc., very wow. Some of that might calm with the reflex work. ADHD meds can also bump processing speed and improve APD symptoms. I'm not saying it's like guaranteed for EVERYBODY, but it happens often enough that it might be something in your mind to weigh when you go yes/no on considering meds. But you know, if you're wanting everything first before meds, reflexes would be your best hope. Some kids get a little shift with food colors (removing them from the diet), etc., sure. Reflexes are the real big one though, the big hope. If they don't change much and her behaviors are still off the charts, I'd be all over the meds.


Edited by OhElizabeth, 22 June 2017 - 08:09 PM.

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#129 Southern Ivy

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Posted 22 June 2017 - 09:10 PM

I'll respond to the rest tomorrow or this weekend, but for the reflex exercises, are these what you're talking about? 

https://www.youtube....jc60vmhLrHTUniw


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#130 OhElizabeth

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Posted 22 June 2017 - 09:20 PM

There are more reflexes than that. Pyramid of Potential has a list of ones on their dvd. You could look on youtube for the tests for the reflexes from that list. The exercises vary, so you'll find different ones for a particular reflex. 

 

So yes, you're on the right track. 


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#131 Southern Ivy

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Posted 23 June 2017 - 03:51 PM

Finally getting to answer: 

 

Why do you think, in that moment, she decided to have those behaviors and answer that way? I think you could reframe this, if you wanted. The behaviors the dc exhibits during the testing DO matter and the psych IS watching them. This is a standardized tool, so that psych has seen tons and tons of kids do that test and is watching the patterns of the behaviors, not just the answers.

So WHY did she do that? I'm sorry, but you saw her. You just saw a facet of her that you haven't explained yet. I could make some guesses why she did it (anxiety, processing speed, impulsivity, immaturity), but I'm just really curious what your take was on why and what the psych's take was. 

I think you guessed quite accurately on why. I went back and reread the report. The anxiety, the processing speed, the impulsivity - all were diagnosed. It was also mentioned that she has the maturity of a 3 year old, which is common for the ADHD (or so the neuropsych said). I did NOT agree with this at the beginning, but paying closer attention to her these last few weeks, yeah. :/ 
think some of the behavior issues stem from another student at her preschool. So, I'm hoping that, given enough time away and with my husband's and my guidance, we will train some of that out of her. I could be wrong an it could all be her, though. lol 

 

 

Sometimes kids are complex and it takes time for us to understand all their facets. Sometimes bright kids are contradictory, both very capable and with astonishing or surprising deficits. That was her, and the question is WHY she was having that behavior. That's what the psych was there to explain. An IQ score discrepancy, that's something you can solve later. The psych probably would have said something if he thought she really was not even ballparking where she should be. Like when people test my ds and he gives answers like that (and he does), they'll say that was your fun answer now give me your real answer. They aren't shocked by it and know he needs some prompting.

So, in regards to the IQ - "Because of the wide discrepancy in subscale and subtest scores, dd's Full Scale IQ of 78, which falls below the average range, is not a good descriptor of her various abilities." It also states in the previous paragraph "When a child has severe ADHD, it is impossible to determine if lack of attention of actual lack of short-term memory caused the low score." (based on her very low Picture Memory score) So, she did address that the IQ is probably not entirely accurate, but at this point, that can't be helped. 

 

So it would be really interesting to you maybe to read through the report from the psych and see if there are clues in there to how s/he interpreted it. Did they diagnose anxiety or a social delay? Did they comment on her behavior during the testing? Usually they'll say something like child is an engaging, bright, active child of such and such age who seemed to participate in such and such way. They'll usually put something about it in their narrative. 

She said she was a very friendly and outgoing, but extremely hyperactive child. She did mention that dd needed constant redirection, but that she responded well to the redirection. It states that she WAS trying to be compliant, but that the environment was incredibly challenging for her. 

 

 

 

I want to go back to this. Your first psych may have just been a not so very good psych. I get it, totally. However, there could be another angle. What if you've never had your dd in a situation where you realized, OBJECTIVELY, how challenging her behavior really is? I mean, I can spit all I want about the person he's with, but reality is it's MY SON having the behaviors, not the adult. Reality is my ds IS challenging. And so you could back up and really ask what is causing your dd's behaviors to be so challenging. 

 

Stepping back and trying analyze everything objectively, I realize that I have never seen her in a difficult situation like that. The NP states that dd coped with the testing situation as best as she could given the "performance-inhibiting effect of ADHD behaviors". Having never seen that part of her, I was mortified; but now I'm just sad that I didn't realize how bad it was, you know? 

 

 

Was there anything interesting hidden in your psych report? Processing speed or referrals or recommendations of any kind? Was s/he recommending meds? What did your ped think of that? 
Yes, her short term memory was the lowest percentile of everything (<01). Some others: Fluid reasoning (02), Processing speed (25), Verbal comprehension (37). Her Visual Spatial was the highest at 75. 
She did recommend meds and I spoke with the doctor.  She is typically against medicating. (She's quite crunchy. ;)
 I do like that about her as she doesn't just push medications.) Anyway, the plan is/was to wait 6 months and see how she does out of the preschool and on a dye-free, sugar-free diet. (We talked about doing the Feingold diet.) She doesn't like to give medications until we can see that it's affecting their education. But, at this point...just giving her the Barton pre-test the other day was crazy. She won't be able to focus on anything, especially any extra tests we need to give her like the CTOPP. So, I'm going to talk to DH again about medication. Because, while at first I was thinking, "oh, it's not that bad", ummm, yeah, it's that bad. 

=

 

 

You asked about SLP evals. They have a number of tools, like the CASL and the CELF. You might see if your neuropsych ran any language testing. He may have. There's usually a list in the report telling all the tests and tools s/he ran.

I don't think she ran any language tests. She ran: 
the WISC
Developmental Profile 3
Bracken School Readiness Assessment
Behavior Assessment System for Children (Parent Rating Scales)
Attention-Deficit/Hyperactivity Disorder Test 


 


Edited by Southern Ivy, 23 June 2017 - 03:52 PM.


#132 OhElizabeth

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Posted 23 June 2017 - 08:08 PM

On my phone due to power outage. I suggest you post the scores in a new thread and ask the gurus to help you interp. Those funky spreads mean something sometimes to people who know what to do with them.

I can see why the results confused and frustrated you! Sounds like he couldn't do a GAI because they were so funky. So try the thread a let people give you feedback. It's free. :)
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#133 OhElizabeth

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Posted 23 June 2017 - 08:15 PM

I'm super crunchy, sure. That waiting advice is baloney. I would check for those retained reflexes, treat those, screen ears with an EXCELLENT audiologist (as in drive three hours for the best if necessary) and then decide. Waiting alone is stupid and will accomplish nothing. In fact personally I would get a new ped. Just being straight. She's not helping you here and you've got hard things coming.

#134 OhElizabeth

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Posted 23 June 2017 - 08:17 PM

Nt

Edited by OhElizabeth, 23 June 2017 - 08:18 PM.


#135 OhElizabeth

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Posted 23 June 2017 - 08:22 PM

Begin anxiety techniques immediately. Look at Social Thinking.com and buy lots.

5 point scale
We thinkers
Any books on anxiety

Her visual is strong so use that. More predictable, more time to transition, more visual communication... ever tried ASL with her? How does it go?

#136 OhElizabeth

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Posted 23 June 2017 - 08:24 PM

Her IQ could go up with better auditory processing after intervention. Given your perception that it's discrepancy I would assume so, intervene on the APD and retest it later.

Edited by OhElizabeth, 23 June 2017 - 08:24 PM.


#137 OhElizabeth

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Posted 23 June 2017 - 08:26 PM

Just asking straight, not implying. Where are you on the spectrum question for her? A small percentage of APD kids have ASD as well so I was just asking.

#138 OhElizabeth

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Posted 23 June 2017 - 08:30 PM

You can get that memory up. I'll bet she's junk at even simple repetition. I LOVE the Grammar Processing Program from Super Duper. Look it up, see what you think. It would build her memory and language, and you could begin immediately. Use it receptively, having her touch what you say, then for expressive where she makes her own sentences for the pattern. That will work on her memory too.
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#139 Southern Ivy

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Posted 24 June 2017 - 11:45 AM

On my phone due to power outage. I suggest you post the scores in a new thread and ask the gurus to help you interp. Those funky spreads mean something sometimes to people who know what to do with them.

I can see why the results confused and frustrated you! Sounds like he couldn't do a GAI because they were so funky. So try the thread a let people give you feedback. It's free. :)

 

What is the GAI? 
I'll do a thread on the scores here in a minute. :) 
 

I'm super crunchy, sure. That waiting advice is baloney. I would check for those retained reflexes, treat those, screen ears with an EXCELLENT audiologist (as in drive three hours for the best if necessary) and then decide. Waiting alone is stupid and will accomplish nothing. In fact personally I would get a new ped. Just being straight. She's not helping you here and you've got hard things coming.

I'm going to go ahead and go back to the ped. She delivered dd, so she knows her really well. However, if she still balks about the medication and doesn't respect my wishes, I will definitely be looking for a new ped. I feel like the behavior is increasing, not decreasing like I had hoped.
Her dad just came home from being out of town for a week. She is so unregulated today and last night. It's rough.  :scared:  
 

Begin anxiety techniques immediately. Look at Social Thinking.com and buy lots.

5 point scale
We thinkers
Any books on anxiety

Her visual is strong so use that. More predictable, more time to transition, more visual communication... ever tried ASL with her? How does it go?

We haven't done ASL. As a baby, when I tried to do baby sign, she would literally laugh at me and shake her head. She would shake her head yes or no when I would just use my words. lol So, we haven't tried it since. 
I do motion with my hands a lot  - a lot of pointing to my mouth or cupping my ear or other movements  - to get my point across. She does well with that, it seems. 
 

 

Her IQ could go up with better auditory processing after intervention. Given your perception that it's discrepancy I would assume so, intervene on the APD and retest it later.

I think so too. The NP said to have her back in a year after she's on meds and she expects a better, more accurate depiction. 

 

Just asking straight, not implying. Where are you on the spectrum question for her? A small percentage of APD kids have ASD as well so I was just asking.

I've never considered it, but I've also only ever really been around boys with ASD, not girls. The only 2 girls that I have known with Asperger's or ASD are nothing like dd. One was a lot older and the other is pretty severe. So it hasn't been on my radar. 
I do know that the signs are different with girls, so I'll look around and see what I think. 

 

You can get that memory up. I'll bet she's junk at even simple repetition. I LOVE the Grammar Processing Program from Super Duper. Look it up, see what you think. It would build her memory and language, and you could begin immediately. Use it receptively, having her touch what you say, then for expressive where she makes her own sentences for the pattern. That will work on her memory too.

Yeah, she's not the greatest at repetition, unless she's done it for awhile. She did great with the poems at school and she can memorize songs pretty well. But, aside from that, having her repeat anything is pretty hard. 
I'll check out the program. Sounds interesting. 


What do you know about Dianne Craft? When we were first looking into solutions for dd, Craft's right-brained phonics was recommended to us. I was looking at her brain integration therapy to see if it would help. 



#140 Lecka

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Posted 24 June 2017 - 12:22 PM

The Dianne Craft brain integration therapy is OT stuff. It is in the category of OT stuff.

If you are looking at OT anyway ---- you could potentially get more personal advice.

If you aren't really going to have that as an option -- it is in the category of things that are at-home OT.
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#141 Southern Ivy

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Posted 24 June 2017 - 12:46 PM

The Dianne Craft brain integration therapy is OT stuff. It is in the category of OT stuff.

If you are looking at OT anyway ---- you could potentially get more personal advice.

If you aren't really going to have that as an option -- it is in the category of things that are at-home OT.


Ok, good to know! 
I just looked at her test scores again and her gross/fine motor skills were in the 27th percentile, so we are definitely going to head to the OT soon. 



#142 OhElizabeth

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Posted 24 June 2017 - 01:08 PM

What is the GAI? 
I'll do a thread on the scores here in a minute. :) 
 

I'm going to go ahead and go back to the ped. She delivered dd, so she knows her really well. However, if she still balks about the medication and doesn't respect my wishes, I will definitely be looking for a new ped. I feel like the behavior is increasing, not decreasing like I had hoped.
Her dad just came home from being out of town for a week. She is so unregulated today and last night. It's rough.  :scared:  
 

We haven't done ASL. As a baby, when I tried to do baby sign, she would literally laugh at me and shake her head. She would shake her head yes or no when I would just use my words. lol So, we haven't tried it since. 
I do motion with my hands a lot  - a lot of pointing to my mouth or cupping my ear or other movements  - to get my point across. She does well with that, it seems. 
 

 

I think so too. The NP said to have her back in a year after she's on meds and she expects a better, more accurate depiction. 

 

I've never considered it, but I've also only ever really been around boys with ASD, not girls. The only 2 girls that I have known with Asperger's or ASD are nothing like dd. One was a lot older and the other is pretty severe. So it hasn't been on my radar. 
I do know that the signs are different with girls, so I'll look around and see what I think. 

 

Yeah, she's not the greatest at repetition, unless she's done it for awhile. She did great with the poems at school and she can memorize songs pretty well. But, aside from that, having her repeat anything is pretty hard. 
I'll check out the program. Sounds interesting. 


What do you know about Dianne Craft? When we were first looking into solutions for dd, Craft's right-brained phonics was recommended to us. I was looking at her brain integration therapy to see if it would help. 

 

The reason I'm suggesting a new ped is because of wanting an experience level. But yeah, work it out. I get it. I'm just saying what maybe you don't know, that peds who do this a lot can put together more pieces, because they're dealing with this more. I had a doc (my own) who was flexible and would do what I wanted. I get it. Ironically, I now take my kids to a ped who is so non-crunchy it's astonishing. He'll actually do anything I want AND challenge me on things. The guy THINKS and he has enough experience to sit in a room with me and think hard. I give him the dots I have and he puts them with his dots. So not crunchy, but actually really nice to work with. 

 

GAI is adjusted. They drop the disability areas and leave you with a higher normal reflective of their ability - disability. If the scores are really wonky, they can't even calculate a GAI. Then you go ok, that's REALLY uncommon, like so not run of the mill, so what is REALLY going on there, kwim? That's good that you're starting a thread. I'm not a guru on numbers, but others are.

 

I'm trying to picture her response to the ASL. It's really curious. Like she understood it and saw through it? Or she couldn't imitate? What happens if you try it now? What if you just sorta played it up big time? Think about how many things you can gather data about here in your attempt: motor planning, social thinking, language, engagement... So I don't quite understand what you're saying, but it would be interesting to try again. Like pick 2-3 interesting signs (hungry, thank you, cookie, whatever) and make a game using them all day. Most typical kids that age, if you showed them a sign for cookie and said I'll give you the cookie every time you use it, would be all over that! So there's a lot there, in that little task.

 

My ds was very slow on signs. He could understand some but not use them, and he was noticeably late both on what he was understanding and using. He's now diagnosed with expressive/receptive language delay. So I wouldn't assume it's just personality with the ASL. Give it a whirl, provide a really motivating set-up, and see what happens.

 

Yeah, sigh, deep breath. I'd be a millionaire with the dollars of thought I put into "this will go quickly and then it will be better"... Swimming, speech, social thinking, you name it. Like so often. I STILL do it. It's just our perennial optimism as mothers, kwim? Life is for the long haul, and any disabilities that are there are going to keep coming up again and again, in new ways, as they grow. We are going to intervene, but we'll have to intervene AGAIN, taking it to a new level, as they grow. It's not like we bring them up to speed and then we just stop and they take over, like it was a brief pause. They're going to need support all the way.

 

That's why I said you're about to realize how extremely valuable you are to her. I'm worth $65-125 an hour to my ds. That's how expensive people are that work with my ds, and frankly at this point I kick butt. I'm not them, but I'm WORTH something. My time with him is WORTH something. Keeping me well and calm and rested is worth something. If I bring in a $15-20 an hour worker so I can do things that restore me (shower, clean, work out, whatever), then I'm able to do the more $$$ per hour things I can do. And I still make sure those less $$ are good and worthwhile too!! But don't undervalue yourself and what you're becoming and what you're learning. For some kids there is no ONE EXPERT. You will become the one expert and you will learn from these $$$ people and pull it all together.

 

Given how much language that IQ testing is using and how she behaved there, I would get her on the meds AND want language work. I would get that SLP testing to see where she's at, and with the meds in her system (to boost her processing, so she can work with you yes but so her auditory system can process and actually take it in and use it), I would work hard on language. Like every day, 20-30 minutes. Not hard as in cruel, but hard as in diligently, with effort, with consistency. And lots of ways. Games are AWESOME. Therapy materials are good. Do a variety. Two pages of GPP plus some social play using a lot of language (dolls, barns, etc.) plus a board game plus another language activity like  Speech Corner - Speech Language Materials Customer Login  ... kwim? That link should be Tell Tale Fairy Tales. I just happen to have it open as something I'm wanting to get. :D

 

On the ASD thing, just go through the DSM. I wasn't really implying anything. It's just an appropriate question to consider when you have social delay plus language issues plus challenging behaviors plus... But it doesn't have to be, totally agree. The DSM is there so you just google and read the criteria. You know her.

 

I met Dianne Craft at a workshop I think. She's a stellar human! I haven't purchased anything by her, but I'm sure it's all good stuff. It's probably not terribly expensive as things go, and when you're like ok how about a list of things that would probably do SOME good, I'm guessing the stuff is good. I *think* somebody said she puts in there exercises to integrate reflexes. Anything midline is good. It's probably all good stuff. I haven't seen it, think I just looked at the samples. Yeah, Lecka is saying it's OT. She also has some recs for supplements at things. There are so many ways to skin a cat. The main thing, when you've got severe ADHD going on, is really beat the bush on those retained reflexes. Doesn't matter how, definitely you want to be checking for those. Pyramid of Potential, Dianne Craft, PT/OT, somehow. For me, with my ds, I had gone through how many OTs. Even OTs are a crap shoot. I find it hard to test. I say that and some smarter people just go on and watch the videos and do it! Me, I'm sort of dopey with all things physical. I forget what was going what way and don't notice the details. For me, I needed help. But all that matters is that it gets done. For some kids, integrating the reflexes will bring astonishing changes. Not changes like don't need meds anymore (usually), but nevertheless big changes. 



#143 OhElizabeth

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Posted 24 June 2017 - 01:12 PM

Ok, good to know! 
I just looked at her test scores again and her gross/fine motor skills were in the 27th percentile, so we are definitely going to head to the OT soon. 

 

Slap me around a little. Your ped had that report, saw those scores, and told you she didn't need an OT referral? 

 

I admit it, I'm a negative, dour person. Truthfully, I don't even like docs, even crunchy docs. One made me sick and I managed to avoid them completely even birthing two kids. I've been known to be rude to docs. My plan is to die and die without one if I'm lucky. So there you go. But if a doc sees you and reads the reports and doesn't make the referrals, that's kinda glaring. 

 

But, you know, walk it out, work it out. She's probably great at everything else. But you're going to want to be very cautious about what you're not getting if you're using someone who is missing crazy obvious stuff.

 

If it's 1.5 standard deviations beyond the mean, EVEN THE PS would intervene. Like that's not the Mom Standard. That's the EVEN THE PS would have intervened there. But don't look at percentiles. Usually they translate it to a standard score (relative to 100) or a scaled score. So then you look up the test to see what the standard deviation was for that test. Maybe it was 15 and her standard score is 60. Then, if it's something like OT stuff, then you go wow that's a big discrepancy, 40 points, which is more than 2SD, so then you do the referral and get evals. 

 

Just your math of the day stuff. :)

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Edited by OhElizabeth, 24 June 2017 - 01:13 PM.


#144 OhElizabeth

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Posted 24 June 2017 - 01:18 PM

I'm sitting here giving language advice, but I'm not an SLP. I talk with my ds' SLPs about what they think, but then I go through sites and pick out stuff. Evals give you data to work with and a baseline. Then you can go with what they suggest, go with your gut, whatever. It would be really interesting to see what the SLP finds and what the SLP suggests. Sometimes there are lots of paths and they can pull together dots and go ok you need to work on these three things, so we'll pull it together into this one, really fun task that uses ALL those things! 

 

That's why they make the big bucks. :D Nah, they don't really make $$ even though it costs $$. They do prep, have paperwork, tons of overhead. But I'm just saying I was using GPP representatively, not saying it's the only or best or right option. 


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#145 Southern Ivy

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Posted 24 June 2017 - 06:38 PM

Slap me around a little. Your ped had that report, saw those scores, and told you she didn't need an OT referral? 

 

I admit it, I'm a negative, dour person. Truthfully, I don't even like docs, even crunchy docs. One made me sick and I managed to avoid them completely even birthing two kids. I've been known to be rude to docs. My plan is to die and die without one if I'm lucky. So there you go. But if a doc sees you and reads the reports and doesn't make the referrals, that's kinda glaring. 

 

But, you know, walk it out, work it out. She's probably great at everything else. But you're going to want to be very cautious about what you're not getting if you're using someone who is missing crazy obvious stuff.

 

If it's 1.5 standard deviations beyond the mean, EVEN THE PS would intervene. Like that's not the Mom Standard. That's the EVEN THE PS would have intervened there. But don't look at percentiles. Usually they translate it to a standard score (relative to 100) or a scaled score. So then you look up the test to see what the standard deviation was for that test. Maybe it was 15 and her standard score is 60. Then, if it's something like OT stuff, then you go wow that's a big discrepancy, 40 points, which is more than 2SD, so then you do the referral and get evals. 

 

Just your math of the day stuff. :)

SaveSave

To be fair, she literally read it right before she came in to see us. It was faxed and uploaded into the system, so she wasn't aware of it's existence until I mentioned it to her nurse, when the nurse asked if we already had a diagnosis for the ADHD. So, I can kind of see how/why she missed it. I've read it 2xs and it's never really stood out to me until today! 


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#146 Southern Ivy

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Posted 24 June 2017 - 07:08 PM

I'm trying to picture her response to the ASL. It's really curious. Like she understood it and saw through it? Or she couldn't imitate? What happens if you try it now? What if you just sorta played it up big time? Think about how many things you can gather data about here in your attempt: motor planning, social thinking, language, engagement... So I don't quite understand what you're saying, but it would be interesting to try again. Like pick 2-3 interesting signs (hungry, thank you, cookie, whatever) and make a game using them all day. Most typical kids that age, if you showed them a sign for cookie and said I'll give you the cookie every time you use it, would be all over that! So there's a lot there, in that little task.

Like, I tried teaching her "more" while she was eating and she laughed, shook her head 'yes' and said "more" and patted her tray. I didn't know she could say "more"!
She did enjoy learning the alphabet sign language at school, now that I think of it. She could sign A-D, but I don't know if they stopped or if she just didn't pick the rest up. 

 

 

My ds was very slow on signs. He could understand some but not use them, and he was noticeably late both on what he was understanding and using. He's now diagnosed with expressive/receptive language delay. So I wouldn't assume it's just personality with the ASL. Give it a whirl, provide a really motivating set-up, and see what happens.

 

Yeah, sigh, deep breath. I'd be a millionaire with the dollars of thought I put into "this will go quickly and then it will be better"... Swimming, speech, social thinking, you name it. Like so often. I STILL do it. It's just our perennial optimism as mothers, kwim? Life is for the long haul, and any disabilities that are there are going to keep coming up again and again, in new ways, as they grow. We are going to intervene, but we'll have to intervene AGAIN, taking it to a new level, as they grow. It's not like we bring them up to speed and then we just stop and they take over, like it was a brief pause. They're going to need support all the way.

 

That's why I said you're about to realize how extremely valuable you are to her. I'm worth $65-125 an hour to my ds. That's how expensive people are that work with my ds, and frankly at this point I kick butt. I'm not them, but I'm WORTH something. My time with him is WORTH something. Keeping me well and calm and rested is worth something. If I bring in a $15-20 an hour worker so I can do things that restore me (shower, clean, work out, whatever), then I'm able to do the more $$$ per hour things I can do. And I still make sure those less $$ are good and worthwhile too!! But don't undervalue yourself and what you're becoming and what you're learning. For some kids there is no ONE EXPERT. You will become the one expert and you will learn from these $$$ people and pull it all together.

 

Given how much language that IQ testing is using and how she behaved there, I would get her on the meds AND want language work. I would get that SLP testing to see where she's at, and with the meds in her system (to boost her processing, so she can work with you yes but so her auditory system can process and actually take it in and use it), I would work hard on language. Like every day, 20-30 minutes. Not hard as in cruel, but hard as in diligently, with effort, with consistency. And lots of ways. Games are AWESOME. Therapy materials are good. Do a variety. Two pages of GPP plus some social play using a lot of language (dolls, barns, etc.) plus a board game plus another language activity like  Speech Corner - Speech Language Materials Customer Login  ... kwim? That link should be Tell Tale Fairy Tales. I just happen to have it open as something I'm wanting to get. :D

 

On the ASD thing, just go through the DSM. I wasn't really implying anything. It's just an appropriate question to consider when you have social delay plus language issues plus challenging behaviors plus... But it doesn't have to be, totally agree. The DSM is there so you just google and read the criteria. You know her.
According to the np, her maturity delay was pretty normal for kids with her level of ADHD. I admit, I was pretty offended when she told me "She is acting like a 3 1/2 year old." But, while I don't see her as a 3 year old, I do see a big difference between her and her best friend (I always have, but I'm a competitive person, so I just brushed it off as comparing and being jealous or something.) 
I read through some signs of autism in girls, and she does some of them, but I'm not sure if it's ADHD immaturity or something else. I'll definitely keep it in the back of my mind though!

 

 

I met Dianne Craft at a workshop I think. She's a stellar human! I haven't purchased anything by her, but I'm sure it's all good stuff. It's probably not terribly expensive as things go, and when you're like ok how about a list of things that would probably do SOME good, I'm guessing the stuff is good. I *think* somebody said she puts in there exercises to integrate reflexes. Anything midline is good. It's probably all good stuff. I haven't seen it, think I just looked at the samples. Yeah, Lecka is saying it's OT. She also has some recs for supplements at things. There are so many ways to skin a cat. The main thing, when you've got severe ADHD going on, is really beat the bush on those retained reflexes. Doesn't matter how, definitely you want to be checking for those. Pyramid of Potential, Dianne Craft, PT/OT, somehow. For me, with my ds, I had gone through how many OTs. Even OTs are a crap shoot. I find it hard to test. I say that and some smarter people just go on and watch the videos and do it! Me, I'm sort of dopey with all things physical. I forget what was going what way and don't notice the details. For me, I needed help. But all that matters is that it gets done. For some kids, integrating the reflexes will bring astonishing changes. Not changes like don't need meds anymore (usually), but nevertheless big changes. 

So, forgive my ignorance, but when we go in for an evaluation, do I mention that I want them working on those reflexes or is that something that will automatically be evaluated? 



And going back to the gymnastics/ballet conversation, we're definitely going to do one after swim. She really wants ballet, but with as much as she climbs and jumps, I think gymnastics would be better. We're going to do a trial class for each and see which she likes. I really think ballet will be too slow for her, but her love of it might override that. 

 


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#147 Moved On

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Posted 24 June 2017 - 11:06 PM

nm 

 


Edited by Moved On, 12 August 2017 - 07:30 PM.

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#148 Moved On

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Posted 24 June 2017 - 11:13 PM

nm 

 


Edited by Moved On, 12 August 2017 - 07:31 PM.

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#149 OhElizabeth

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Posted 24 June 2017 - 11:13 PM

Yeah, that's pretty curious. I mentioned in your other thread that you should at least consider whether motor planning is involved in her speech/articulation issues. It would explain why it took so long to get that one voiced/voiceless pair. I mean, that's something they could have done the prompt on and gotten it BAM. To me that just raises my eyebrows. And then you have her not imitating the hand motions of the ASL or doing it in limited fashion. That's something they do when looking at motor planning in kids. They'll give them simple hand motions to imitate and see what happens. So you can have motor planning issues verbally, orally, all over, and to different levels of effect in different parts.

 

My dd has some *mild* praxis. She likes ASL a lot, but she struggles to imitate it and needs the signs actually explained. If you just demonstrate it to her (like say in an actual ASL class, which would be entirely with no speech), she can't do it and is toast. 

 

DSM for autism DSM-5 Diagnostic Criteria | What is Autism?/Diagnosis | Autism Speaks Again, I'm not saying it's going on. I'm just saying it's one of those things you can read through for yourself and decide or check off the list or whatever. You know her. The amount of social delay your psych is saying is the amount my ds has. It's not really the core of the diagnosis, because, as you're seeing, social thinking deficits cross labels.

 

Ok, sigh, retained reflexes. You really don't want to ask me because I've become a snide, cynical old soul and I say nasty things. And I'm only 41! Like I really don't mean to offend anyone, but I haven't figured out what they actually teach these people. I know they teach SLPs and OTs stuff in school, and they work and work to get these advanced degrees. But it seems like everything WE needs turns out to be some kind of BONUS stuff they had to go to extra workshops for. And this is gonna be so the story of your life for the next how many years! 

 

So every OT, SLP, etc. you meet has basic training. They went to grad school for it, passed a certification test, blah blah. But once you get really in the weeds on these particular things, like do you know how to test for retained neonatal and other types of reflexes, are you trained in the best methodology for apraxia of speech, etc., etc., that's all EXTRA stuff they had do to afterward.

 

Which means that if you go to a random OT/PT/SLP/whatever you have a random chance (or less) of them having the training you're wanting in your person. So that's why I was suggesting you network. Like find a PROMPT therapist (to get screened for praxis of speech) and ask THEM who they refer kids to for PT. :) Then you're talking to someone who sees a lot of these kids who has found out who has this extra, specialized training. Because reality is a lot of OTs won't. 

 

We ended up getting help through a PT. We went to an OT who had *some* training but only got us part way there. We've been to a bunch of OTs who had NO training at all.

 

You'll need an OT, because you have glaring issues. But really you're looking for a gem, someone special.

 

Yeah, gymnastics is pretty awesome. You could even let her do both if you can stand the torture. Maybe you can get in hours while she's in practices? :D

 

 



#150 OhElizabeth

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Posted 24 June 2017 - 11:30 PM

Also, while I can't speak for how things are in the US, here, SLPs specialize in autism and have to be on a special autism registry for their services to be covered by our autism funding. What I am trying to say is, if there's a possibility that you do have autism in the picture, it might be better to know before choosing a SLP.

 

Yeah, at least in *our* area that isn't an issue. I will say that if she *happens* to get an eval with a PROMPT therapist, they will be seeing a lot of autism. And when you go with an SLP who works with a lot of autism, they're hopefully going to have lots of experience with behavioral supports. We took a break, changed SLPs within the practice, and when we went in to the new one FIRST THING she asked was where's your behavioral plan. She's super awesome with working with him now. 

 

Each SLP has their gig and way they've found, but having someone with that level of experience to give behavioral supports for challenging kids can be REALLY helpful. I talked with another type of provider, a reading tutor, and they're like oh yeah those autistic kids are so frustrating and hard to work with, they're UNDER THE TABLE... And I'm like dude, I don't care what your certification is, if my kid is under the table we're probably not connecting. 

 

But that was a rabbit trail. I've just seen a wide range. They actually didn't work on behavior with my ds for years. They just strapped him down and physically compelled him to work. I didn't know better and didn't realize what we weren't doing that needed to be done. Now he's so big, we don't strap him down, mercy. But now we actually have to get in his head and help him know the plan, use his strategies to stay calm (because therapy is HARD!), make good choices, etc. 

 

You think 5 is hard. Imagine what's coming if you don't get things working better and she's 7 or 8. It won't be pretty. It gets a LOT harder. You are in your big window now where you can, relatively easily, get her to work with you, compel her or motivate her to do something she maybe wouldn't be too keen on, etc. There's coming a time where it won't be that way. That's why I was so pissy about the "oh just wait 6 months" junk. Everything was easier at 5 than it is at 7/8. You really, really, really want to be doing things now. And if she's as bright/gifted as people around her seem to think she is, that discrepancy will grow. 

 

On the other side, and just to rabbit trail a different direction, I would encourage you to respect the social delay. She's very bright AND very young inside. So my ds will watch Paw Patrol and listen to college lectures in the same day. Same child. His whole level of interaction in therapy is multiple years younger than his non-ASD peers. Like the way they work with my ds is just much, much younger! They've been able to step it up a little, but he still CRAVES younger things and needs them. They FIT him. So he's going to play, with glee, in therapy board games meant for 5/6 year olds. 

 

The language delays plus social delays really have meant for my ds that he's not ready to read. Like even though we got the decoding going, he didn't have the language to understand what he was reading. And even when some of that comes together more, that maturity thing of oh I want this, I want to read to learn, I will do this because I want to ISN'T THERE. And me, I just embrace the pace. That's my mantra: Embrace the pace. And maybe when he's 10 or 12 or 14 I'll be a little freakier, but for now I try to respect it.

 

So what that meant functionally? You're supposed to be homeschooling in the fall, but it may not look like what people on K-8 call homeschooling. Instead of a list of curriculum, maybe you have a list of interactions you try to create or roll with daily. Maybe your goals are language and social and explorations through games. We played a LOT of games when my ds was that age. We STILL play a lot of games! And anything we can do with games, we do that way. 

 

I don't know if you have state laws to deal with or feelings about what you see on K-8 or whatever. I'm just saying it's ok to free yourself and roll with her. 


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