DS 15 ADHD, other? (ASD?) - School Failure - Writing/Thinking - Advice needed

[abrightmom]

By the way, the fine and gross motor issues suggest dyspraxia to me. DS has that diagnosis as well (and many others). You could get an OT to evaluate him.

 

Did he have speech delay as a toddler?

No speech delay! Highly verbal; precocious. 

 

He didn't crawl. He did a weird thing we called a 'hitch' and he drug himself army style. But he never crawled. I don't know if that matters. 

[abrightmom]

Also, I have another son who does not have NVLD or the other issues DS13 has.

 

DS12 has trouble with rigid thinking, though he does not have autism. When faced with something in school that is hard for him, he freezes. His mind just can't work, and he will balk and say that it is impossible or just "I don't know" when we try to talk him through it.

 

It has been a huge, huge problem, and it took us years and some private evaluations and the help of his teachers to figure out the root issues and how to handle them. He has a 504 now.

 

In his case, the root causes are EF and inattention (though not enough to get an ADHD diagnosis, in his case) and anxiety.

 

Anxiety is a big one. And I didn't realize it, and I would have done so many things differently with him when homeschooling, if I had.

 

As long as he is is a state of anxiety and is stuck, he cannot make progress on whatever he is meant to be working on. As in, he just cannot, no matter how much the teacher or we at home try to work with him or explain it. The anxiety shuts him down, and we've learned we have to wait for the anxiety to pass before trying again. I used to try to make him push through it. And do you know how many times that was successful?  Yup. Never.

 

I wonder if anxiety is playing a role in your son's feelings of failure and impossibility.

I've not considered anxiety. But rigid thinking certainly sounds familiar!! He does shut down and it's just as you describe. Pushing accomplishes nothing but a melt down. He becomes distraught. He can't come back to it though; he's done as far as these writing projects are concerned. The decision has been made by him. He says there is no way he can do them and even if he made an attempt it would be so poorly done it wouldn't be worth the work or stress to get such a bad grade. His thinking makes sense! I mean, I really really get it. 

[abrightmom]

I didn't realize the CS Lewis was a separate class from the English class.  I guess you need to find a way to get that accommodated or dropped also.  What are all his classes this year?

 

My son is in 9th grade at a brick and mortar small rural public school and we know some of what other 9th graders he was in school with in past are now doing at much larger urban public schools, including one which is near the state flagship University and has most of the professor's kids.  As well,  have some idea of what the school in NYCity I graduated high school from, which is a school for gifted children does.  Putting that all together, while I don't know what the average quality of the papers that get turned in, the essays that get done at your son's school are, just in terms of the assignments, I think they sound unusually difficult, or maybe even to put it more strongly, they sound out of line for anything other than maybe an honors English in an IB program.  In fact they sound somewhat more like what I had at AP level English myself.

 

Our little public school has only one 9th grade English class and everyone does the same thing, pretty much (unless they won't be getting a regular diploma). There are 4 books read during class and discussed which have short answer written questions and sometimes presentations have to be done on these orally.  Plus I think they read some current events publication and have to do things related to that. There are short writing assignments in class, or rarely as homework (one of which required a little research and a thesis statement--but they got help with that in class as part of the process). The main required writing is that 4 books have to be read independently and a 2-3 page review/report has to be written about each book (one each quarter).  The protagonist and antagonist and main supporting characters have to be described, the setting has to be described, the plot has to be summarized. A theme has to be identified and discussed.   The first time my son had trouble with it, but the second time knowing what the written work at the end would have to be a book was chosen that leant itself to the format and it went easier.  He's now on the third time through the same sort of process and it is getting a bit easier to do now, I think.  No footnotes etc. are required.  Finally, one of the writing assignments done during the year will have to be worked on and revised and improved, student's choice which they want to spend more time on, as the last writing project of the year. 

 

At the big public school by the Uni, there are classes that can fulfill the English credit by doing creative writing, journalism, and even one that combines PE (not your son's thing I now understand but still just to illustrate a difference) with English--where they may do something like go for a hike, and write about the hike; try a rock climbing wall, and write about that, etc.  No doubt the honors English does more, but it is possible to get an English credit with far less intensely academic writing than your son is being required to do.  And I'm not even sure that the honors English for IB program does actually require that much of 9th graders.

So helpful! Thanks. It actually makes me feel a little better as a Mom and it helps my son to know these are especially challenging assignments! 

 

I do wonder what other students are turning in. I really do wonder. 

 

He has Spanish, Geometry, English, C.S. Lewis (first semester was Freshman Seminar; they did study skills, which he missed, and then a quarter on public speaking which he survived), Biology, OT Survey and PE. 

Edited March 24, 2018 by abrightmom

[PeterPan]

LPC is probably a masters in counseling or social work. I don't know if they can get that with a bachelors, dunno. You could google. It means she at least has a degree and did an internship and had supervision, is insured, etc.

[PeterPan]

There's kind of a fine line between stress and anxiety. He could be stressed and unable to problem solve and have it come out as rigidity. Or he could just flat have anxiety. The anxiety would be present in more situations.

[PeterPan]

I guess my concern would be if they're shooting over his head in 9th, how much are they going to be shooting over his head by 12th? Is some of that stuff (that could be coming up in later grades that might not fit) skippable? 

 

Like say everyone has to have a senior project and has part of that they have to write a 10 page paper. I'm just making this up. Well you might look ahead and go that will never be a good fit, and see a list of things like that over the years, and go ok, pull the plus on this, we're done.

 

I don't know, just thinking out loud. Was the CS Lewis thing *elective* or required?

Edited March 24, 2018 by PeterPan

[matrips]

Has he ever been seen by an OT? Or had his reflexes checked?

 

I had always assumed my kids were fine physically and was shocked when I saw how they responded to the OTs retained reflexes test. One was easily fixed (for lack of a better word) and many inattentive type issues and the distractedness and anger have greatly diminished as his body and brain are working better together now. The other one is getting there. It’s been an interesting journey, and has explained so much. I enjoy sitting in on the Therapy and as he/his body reacts, she explains what is going on.

[abrightmom]

I guess my concern would be if they're shooting over his head in 9th, how much are they going to be shooting over his head by 12th? Is some of that stuff (that could be coming up in later grades that might not fit) skippable? 

 

Like say everyone has to have a senior project and has part of that they have to write a 10 page paper. I'm just making this up. Well you might look ahead and go that will never be a good fit, and see a list of things like that over the years, and go ok, pull the plus on this, we're done.

 

I don't know, just thinking out loud. Was the CS Lewis thing *elective* or required?

Required. 

 

He asked me about that. He was concerned about not being able to do the writing in future years. It is a concern which is why I'm HOPING they will allow us to rock the boat and be part time enrolled. I'd like him there for several classes. We live half a mile away so the drive is 6 minutes round trip. It would be a cinch to drop off/pick up at intervals if needed and that is FAR easier than homeschooling him and having him home all day. I don't know if they'll do it though; currently they don't. ;)

 

He NEVER has Spanish homework and is pulling an A, he has a solid A-/B+ in Geometry (says it's too easy) and has occasional homework, no homework in Bible (A), occasional homework in Biology (A-/B+), PE is an A (he likes their PE; gets a good workout), English was a B 2nd quarter and he survived the writing; the assignments have been harder this quarter (linked to literature and the research project); the C.S. Lewis class is required by their school. I think it should be a junior or senior class though! 

 

I think the research paper thing is a monstrous project for 9th graders who are still in puberty. The requirements are heavy and the data packets/notes they are giving him is an overload. Credible/Non-credible sources, plagiarizing, MLA format, research proposal, outline, 8 sources (two books, 1 database through library, others are your choice), in text citations, footnotes, bibliography, minimum 25 notecards, 4-6 pages. The topics were tough too! It's hard to have a challenging topic and then wade through so much data looking for quotes or research that you understand and then know should go into your paper!! *I* would have a TOUGH time with this assignment. I'd be stressed the entire time. STRESSED. The Symposium, which follows the research paper (and presents the findings), has stringent requirements; extremely detailed. I didn't do anything like it in college. I won't bore you with the details but I felt like I was reading a college syllabus. ??? The teacher is lovely but maybe asking too much of freshman. I think it is a fabulous school and an amazing community. I'm so so so sad. My next kid in line, DS13, would LOVE to be in school but he would literally DIE in this English class no matter how hard we work on literature and writing in the next year. 

[abrightmom]

Has he ever been seen by an OT? Or had his reflexes checked?

 

I had always assumed my kids were fine physically and was shocked when I saw how they responded to the OTs retained reflexes test. One was easily fixed (for lack of a better word) and many inattentive type issues and the distractedness and anger have greatly diminished as his body and brain are working better together now. The other one is getting there. It’s been an interesting journey, and has explained so much. I enjoy sitting in on the Therapy and as he/his body reacts, she explains what is going on.

This fascinates me!! I'm going to look into it. No, he's never seen an OT but I'm curious. THANKS!

 

ETA: Looked this up. Wow! There is something to this ... he didn't crawl. He has all of the symptoms associated with Symmetrical Tonic Neck Reflex, which is connected to crawling on the hands/knees:

• poor posture
• tendency to slump when sitting, particularly at a desk
• poor hand-eye coordination
• messy eating
• clumsy
• problem catching balls
• slow at copying from blackboard

Edited March 24, 2018 by abrightmom

[Pen]

So helpful! Thanks. It actually makes me feel a little better as a Mom and it helps my son to know these are especially challenging assignments! 

 

I do wonder what other students are turning in. I really do wonder. 

 

He has Spanish, Geometry, English, C.S. Lewis (first semester was Freshman Seminar; they did study skills, which he missed, and then a quarter on public speaking which he survived), Biology, OT Survey and PE. 

 

 

Very possibly the average quality of what is being turned in is not all that high.

 

You might ask if you could see something that a student has done that she considers an A paper, a B paper and a C paper, with no student names revealed, but just to give you an idea of what she is expecting.  

 

 

Is the English / CS Lewis teacher older and experienced or young and idealistic?  Does she continue to be THE English teacher for all 4 years?

 

We have one teacher at ds's school who is in most ways excellent, but he is a pretty recent grad himself and I think he  thought he could get the kids to do nearly university level work, just sort of adapting what he had had in college for them. And some of it was fascinating for them, but some of it was over their heads and just too much.  He seems to have cut back his expectations now somewhat.

 

A lot of managing school (as I keep telling my son, and so do his coaches and study hall teacher) is just showing up and turning in something for basic assignments.  

 

Mine has a tendency to zig-zag between very well done assignments and then ones that he does not do at all (or does, but does not turn in as in "that crumpled paper was due last week"). Particularly in English. I keep reminding him that a 100 and a 0 averaged together give a 50 which is an F, but for about the same amount of work and time spent he could likely get two 75's which is a C.  Like for some written work just getting it in with an appropriate title page, the right type face, margins, and some other details like that requested by the teacher is already about 50 points...a few more things requested in the assignment and it gets up into a C range.

 

 Sometimes there is a grading rubric where what part of the assignment is going to have how many points can be seen and strategic decisions could be made like not to bother with the footnotes part, for example.

 

Some time back my ds had an assignment to write about his favorite constellation.  "Mom, I can't ."  why not?  "I don't have a favorite constellation.  The stars are not necessarily even near each other in the sky, they just look like that to us so we make up names and stories for them. It doesn't make any sense."  It took a while to convince him to just find any constellation and look up some information about it online and write ...  something...   anything...  Or alternatively to write about why constellations didn't make sense to him.  It didn't actually have to be a "favorite" constellation and it didn't have to be great writing or great information. Just get something down.    Or similar if a prompt says something like "do you agree or disagree with ...." and then gives some hopefully thought provoking quote, my son is likely to say he does not either agree or disagree and doesn't find the issue particularly interesting.  So I have to convince him to just choose, flip a coin if need be, and start writing something "as if" he did either agree or disagree.  

 

These very literal responses to the assignments could sound like an ASD sort of rigid thinking response, but I also don't think my son has ASD (nor has anyone else thought that).  I just think it is, well, part of  learning how to play the school game.  

[PeterPan]

Yeah, if he didn't crawl, you'll have retained reflexes. You can search around for an OT or PT or someone skillful at them or try youtube. HUGE difference here with working on them. Won't make ASD or ADHD go away, but will be astonishingly worth it.

[Pen]

Not sure if I can use the new forums. But want to suggest books and films by Richard Lavoie, such as film: Beyond F.A.T City and a book with the word Motivating in title

[Pen]

correction: Title is The Motivation Breakthrough --a lot with regard to ADHD and school. Highly recommend.

[kbutton]

I definitely think that some of what you are seeing could be ASD.

I also think that this could be a bit of an educational misfit with the current setup. I think that writing develops differently for many people, and when asked about things that sound subjective, it's a whole skill set of its own to answer questions in an objective way. Some of the kinds of writing assignments you are talking about are difficult for some kinds of kids just based on personality. I hate a lot of what is put in the lit analysis bucket for a multitude of reasons. One big one is that, like your son, I don't care. Maybe if I'd EVER been taught lit analysis as opposed to being dragged through lit analysis without any guidelines, I would feel differently. But, one big barrier is that putting my thoughts about something relatively subjective out there over and over to be graded on is just plain DRAINING. Like, put me in the loony bin draining. For starters, I feel obligated to really have those thoughts and beliefs, whereas another student could just verbally puke on paper and feel free to do so. And still others would feel free to construct a coherent thesis that they literally don't care about or feel vested in. All of those are hard for me. If a teacher assigned me a viewpoint and asked me to write from that viewpoint, then I could. I would hate it, but I could do it. But to just leave things open-ended and then ask me what feels like a subjective and fairly personal interpretation is something I cannot do, particularly on a regular basis.

Other things sound like organizational issues, but I would not put that down as pure EF with all the other stuff you are seeing without getting some language testing, like the Test of Narrative Language, Test of Problem Solving, etc. (adolescent versions). It could be that some of it is shutting down, not just because of the volume and steps, but because there are levels of organization that show a difficulty with language--categorizing, sorting, labeling, making concrete things abstract to talk about them, etc. My son has issues with this last thing. I mean, he'll shut down over "too much" as well as the level of difficulty, but the primary problem is that he has typical ASD problems with organizing, labeling, categorizing, and using language flexibly even when he understands a concept. 

My other son, who is also 2e, but has ADHD and no ASD, is a natural writer, and the hardest part is finding a way to scaffold that sets him free to write vs. makes him jump through hoops he doesn't need. He can be overwhelmed by too much, but it's not a writing thing. It's a procedure thing. He has things to say and says them extremely well when he is scaffolded appropriately.

Your son sounds very much 2e to me, and that can make it harder to see both the strengths and weaknesses--they camouflage each other big time!

[kbutton]

If he has retained reflex issues and coordination issues, he might have ocular motor issues and need vision therapy also. I see lots of red flags in your posts for more information about visual processing and integrating his brain and body. A tailored program is better than a one-size-fits all program, but who you find to work with him ranges from a vision therapist to an OT to a PT and sometimes just a wonderfully intuitive person who has had kids with similar issues. 

[katilac]

I didn't see this specifically addressed, but it's a long thread and I apologize if I missed it: 

If your ds can pass the CS Lewis and biology classes, I would strongly consider having him finish. Sure, if they'll do some accommodations, great, but C's and D's are not the end of the world. The writing assignment sounds quite difficult, but, as another poster noted, the other students may not be turning in stellar efforts either. He has a high grade in biology, so he can probably pass even if he tanks the symposium. And if he fails, all that means is that . . . he fails. It happens. People fail classes all the time. I failed algebra in high school, and got C's and D's in college algebra. I hated it, I had a poor foundation and terrible math anxiety, but I survived and graduated from both high school and college. Getting a D or an F in a couple of classes does not sink the ship. 

You seem to think this school is good for him in many ways, and a decent social fit is an important factor for quirky kids, so I wouldn't be too quick about pulling the trigger to leave or even go part-time. 

You are moving forward with lots of ideas and things to help him, that is great! I'm sure it seems very overwhelming, but you are putting things in place to help him in the long term. 

[abrightmom]

A bit of an update: (THANK-YOU for the incredible feedback! What a blessing to me!)

The test results for the "cognitive test" show that my son's working memory is low. The learning center that serves the schools in our community used a test called PACE. The tests are from the Gibson Cognitive Test Battery. I have no idea what that is! His working memory was -4.3 below his age. He also showed a lower than average logic and reasoning score but I don't know what this is. The descriptor says: to reason and solve spatially defined problems which require high level conceptual abilities. ?? He was high in visual processing, word attack and auditory analysis and "on age level" for processing speed, selective attention and spelling.

The results are unsurprising and do confirm the ADHD issues. 

They recommend the PACE program; it's some sort of brain therapy that is intensive. The cost is $300 for the kit plus $40/hr for a 60 hour program (and some at home work). That's about $2700. They also recommend he follow that up with something called Rhythmic Writer (still need more info on this) and then Cog Med for a year. I know nothing about Cog Med however I've noticed that some say there isn't evidence that these brain training therapies do much for kids. DO THEY? Are they worthwhile? Life changing? Helpful? I don't know what to think or do at the moment. 

He is getting an F in the C.S. Lewis class; it's possible we can squeak by with a C- in English but it could become a D without the research paper project. The school wants him to stay and I don't want to homeschool him. However, my son needs time to right the ship! He may need therapies that take time, energy and money. He won't have all of his 9th grade credits. He isn't going to be any more skilled in English and it will be the same teacher throughout the years. Despite his struggles and the apparent Honors level work being assigned the majority of the freshman class (15 students) are doing very well (this is what I was told and I believe the teachers!). 

He has an appt. with a PT who, if I'm understanding correctly, works with kids with ADHD and other developmental disorders. I want to investigate retained reflexes with the therapist so that is what we will do. 

I don't yet have any other testing scheduled but I'm working on that. We live in a university town and there is a Behavioral Health Clinic that does a battery of tests for a low cost. I don't know how skilled or experienced they are but for the price and location I will try this route FIRST. Finding an available and specifically skilled psychologist is proving difficult. 

My mind and heart is telling me that he needs an unconventional year; a gap year of sorts in which he finishes freshman work and does some of his 10th grade work. He can focus on therapies, testing as needed (depending on our timeline for getting to it), some personal pursuits (to fill his heart tank), counseling (he needs this), social thinking (hoping to find this) and life skills (I need margin in my life to help him; he is almost completely dependent on me and I'm spread so thin with all of the kids and a husband who is away a lot). 

I read SWB's new book "Rethinking School" and it has challenged me to rethink school. ;) I am not very courageous but no matter what I do this son cannot stay on the traditional track. :) 

I am so tired. :)

I have no idea how to edit my Signature since the update :). 

 

[PeterPan]

PACE is cognitive therapy, yes, and for the right person it can make a big difference. It seems like a total rabbit trail in your case, where spectrum and social thinking deficits were on the table, weren't they? I'm loosing the strand here. 

The first thing to realize in disability stuff is that EVERYBODY IS OUT TO TAKE YOUR MONEY. They just are. So the first thing to do is NOTHING. Take a deep breath, slow down, figure out what they're identifying, see if what they're offering is targeting what you're complaining about. 

The VT (vision therapy) place we used does PACE and the therapists are so good there that I have no doubt that it's quite useful in the hands of a good therapist. It's cognitive therapy, and from what they explained to me they're trying to expand the dc's ability to process and handle distractions. So for instance my dd wasn't using enough of her visual processing, so they would have focused on developing that. It would have been good. However WHAT does that have to do with your original complaint? Nothing, squat. I'm not saying PACE is bad, because it's not. If I had had the $3k+, I would have done it for my dd. She's that really typical ADHD kid who would have benefited from it. 

Have you had an OT eval? Tonight google for a list of the primitive/neonatal reflexes, look on youtube for videos, and test for them. It was cost nothing. If he has retained primitive reflexes, you need to work on those. You said he didn't crawl, so odds are he has retained reflexes. You could start those now for free. Meanwhile, I would be looking into a psych eval to answer the ASD vs. ADHD vs. whatever question. I would need to reread the thread, but I thought that was on the table. And then I would look into getting intervention for Social Thinking with an SLP or behaviorist who is trained in it. What was your biggest complaint here? What's holding him back? Like I said, I've lost track. Make sure you're solving the PROBLEM and not just tackling things that would be good but aren't pivotal right now. If you've got a high schooler and spectrum is on the table, you need to know you're addressing social thinking and social skills. That will affect his employability and his ability to function, not his working memory. 

Cogmed is fine, but the data was showing a 10% bump in working memory and the cost was $2k-ish. Who cares what it costs? You can build working memory lots of ways for free, and as soon as you stop it will drop right back down. They're selling you Executive Function improvements. That's GREAT. We talk about EF all the time on here and working on EF is great! But is it really your BIGGEST problem right now? Don't go fast into this, because you could burn through all your money and not have anything left when you finally realize the most important things to make happen. Do for free what can be done for free. Ask us more ways to work on those things. Do a google site search and you'll find threads. It can take time to figure out what your biggest problem is and what will make a difference. Definitely slow down, take a deep breath, wait a week or two, keep reading.

[PeterPan]

These people prey on your desire to fix things and make problems better or make problems go away. The therapies can be good, but that doesn't mean they'll actually help what you have going on. You want to be very careful.

We ALL feel this, when we realize our kids are having problems. We want to make it better and we want to make it happen NOW. What happens if you don't do those therapies? Would you find another way? Some things are irreplaceable or unique, and sometimes there are multiple ways to do things. 

Don't let therapists prey on your vulnerabilities right now. It's ok to slow down, take a deep breath, and be sure before you spend lots of money.

[Pen]

I think that only some people here on this forum have ever thought ASD. The OP mom does not think that her son is on the spectrum and no in person evaluators seem to have ever have suggested that. But it did sound like he had some social needs that could perhaps be helped by more social training. That though seems not to be the main thing. The main thing seems to be that he has ADHD. I agree with PeterPan about not being pulled into too expensive therapies though if they are needed. I am always wary if the same person doing an evaluation saying that an expensive therapy is needed is also who provides the therapy. I want to re-recommend the book I mentioned above by Richard Lavoie. Having recommended it to you, I am rereading it myself and finding a lot that is valuable. And compared to the therapies you mention it is very low cost.

[Pen]

PS I do see that there is ASD in the thread title though, which is confusing. Maybe OP can clarify why it is in thread title and yet she says she does not think he has it, and it has not been suggested by in person evaluators.

[kbutton]

To learn more about his scores on this test, you can read the technical manual for the test online. The manual tells you the theoretical basis for the testing (Cattell-Horn-Carroll theory of intelligence), how the test is normed and validated, etc.  https://www.gibsontest.com/web/technical-manual-digital/

It describes the portions of the test. The logic and reasoning portion is a measure of fluid intelligence. Cognitive therapies often focus on processing and memory. I don't know if they work on fluid intelligence or not.

Fluid Intelligence definition: (quoted from http://www.iqscorner.com/2013/01/chc-theory-fluid-reasoning-or.html)

Quote

Fluid Reasoning (Gf): The deliberate but flexible control of attention to solve novel “on the spot” problems that cannot be performed by relying exclusively on previously learned habits, schemas, and scripts. Fluid reasoning is a multi-dimensional construct but its parts are unified in their purpose: solving unfamiliar problems. Fluid reasoning is most evident in abstract reasoning that depends less on prior learning. However, it is also present in day-to-day problem solving. Fluid reasoning is typically employed in concert with background knowledge and automatized responses. That is, fluid reasoning is employed, even if for the briefest of moments, whenever current habits, scripts, and schemas are insufficient to meet the demands of a new situation. Fluid reasoning is also evident in inferential reasoning, concept formation, classification of unfamiliar stimuli, generalization of old solutions to new problems and contexts, hypothesis generation and confirmation, identification of relevant similarities,differences, and relationship among diverse objects and ideas, the perception of relevant consequences of newly acquired knowledge, and extrapolation of reasonable estimates in ambiguous situations.

 

• Induction (I). The ability to observe a phenomenon and discover the underlying principles or rules that determine its behavior.
• General Sequential Reasoning (RG). The ability to reason logically using known premises and principles. This ability is also known as deductive reasoning or rule application.
• Quantitative Reasoning (RQ): The ability to reason, either with induction or deduction, with numbers, mathematical relations, and operators.

The above definitions were abstracted from Schneider and McGrew's (2012) contemporary CHC theory chapter in the form of a special CHC v2.0 publication. See the chapter for more in depth information regarding this ability domain and contemporary CHC theory.

3

Fluid intelligence is usually tested nonverbally.

[abrightmom]

Thanks for the insight and cautions! They are worthy of consideration. 

Pen, ASD was on MY mind for some time due to his social difficulties and a suggestion made by his grandma. The more I have studied ADHD and learned about it I think that he is dealing with that plus social anxiety. I do doubt myself though and at times wonder if there is more (ASD, giftedness, etc.). I don't think he's gifted because I don't see any area of giftedness. However, I don't know what I'm looking for and I've been told that if he is 2E then his giftedness is masked. Clearly, he has some learning and brain development issues. This compels me to want more evaluations that could uncover some clue. I just want to do the right things to help him manage! :) He hasn't had any thorough evaluation yet! He's been seen by the pediatrician twice and tested by this educational center that serves the schools in our community. 

 I *think* he would benefit from some type of cognitive therapy (not sure if that is the name), occupational therapy (retained reflexes), nutritional/medical interventions and social thinking counseling/training. My confidence wavers though. 

THANKS for connecting me to the Gibson test information! I haven't purchased Lavoie's book but I started looking at his You Tube videos yesterday. It's on my list :).

 

You all have been incredibly kind and helpful! Thanks so much. 

[PeterPan]

https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile

In a clinical setting the ADHD and ASD kids merge for social thinking, at least on the level your ds is functioning at. It basically won't matter whether you call it ADHD + social delay and anxiety or ASD. Same materials, same approaches. The ADHD kids just pick up the clue phone a lot faster. 

What you might do is go through the Social Thinking book listings on their site, see what they recommend for his age, and see what's calling to you. That's going to tell you a lot.  Also, it's typically an SLP doing the social thinking intervention, so they could see what's going on with the writing issues you were talking about.

For the EF stuff, if he doesn't want to work with you, the person you're looking for is an educational therapist. There's a certification process for them. They aren't everywhere, but if you find one they might be rocket fuel. Otherwise, just see what you can find. Sometimes you'll find psychs who specialize in ADHD who do CBT. The ed therapist will have a lower pricepoint maybe. Just varies.

[abrightmom]

1 hour ago, PeterPan said:

https://www.socialthinking.com/Articles?name=Social Thinking Social Communication Profile

In a clinical setting the ADHD and ASD kids merge for social thinking, at least on the level your ds is functioning at. It basically won't matter whether you call it ADHD + social delay and anxiety or ASD. Same materials, same approaches. The ADHD kids just pick up the clue phone a lot faster. 

What you might do is go through the Social Thinking book listings on their site, see what they recommend for his age, and see what's calling to you. That's going to tell you a lot.  Also, it's typically an SLP doing the social thinking intervention, so they could see what's going on with the writing issues you were talking about.

For the EF stuff, if he doesn't want to work with you, the person you're looking for is an educational therapist. There's a certification process for them. They aren't everywhere, but if you find one they might be rocket fuel. Otherwise, just see what you can find. Sometimes you'll find psychs who specialize in ADHD who do CBT. The ed therapist will have a lower pricepoint maybe. Just varies.

I love the stuff on the social thinking site.  I did read through that entire article and I believe he fits their Weak Interactive Social Communicator (WISC) group to a "T". 

The gal I met with who performed the PACE testing IS an educational therapist and she has been through the certification process. They're crazy busy here! Her cost is $40/hr and we're discussing options. She needs to meet with him 3-4x a week and I do the other 2-3 hours of work. The goal is 60 hours inside of 12 weeks (according to the PACE program). 

Is an SLP a speech-language pathologist? Maybe I already asked this; I'll scroll up. 

[PeterPan]

Look, I'm sorry if i'm sounding really b&w here or whatever, but I'm still not seeing it. The person giving you the limited eval and telling you need PACE so much is gonna make $2-3k off you, yes? Not exactly objective advice. I reread your initial post, and you're not screaming someone with cognitive issues. He wants to accelerate his academics and was flying through them till he got in a class with complex writing assignments requiring lots of high level thinking.

The thing you hit repeatedly in your initial post was social thinking stuff. The writing issue goes back to the social thinking. The anxiety is social thinking. All that behavior mess was social thinking. 80% of what you listed was social thinking. So you spend $2-3k on PACE, which doesn't address what you were concerned about but won't hurt anyone and will advance anyone, and you still haven't addressed your social thinking issue but are possibly out of money. And to need Cogmed after PACE, that's really questionable to me. That's another $2k, at least in our area. She just sold you on $5k in services and none of it addresses the bulk of what you listed in your initial post.

Your ped strongly encouraged you to do a med trial, and he also wanted to run genetics. Did you get the results back on the genetics yet? A large percentage of kids on the spectrum, if you believe what you read online, are under-methylators, and that will show up in the labs your doc wants to run. Also there's a gene for not converting tryptophan to 5HTP, which causes the anxiety. That too will show up in the genetics. So it seems to me your ped was giving you some really spot-on advice there, because he was giving you instructions that would allow you to treat the underlying physical problems so that the counseling or social thinking intervention would be more effective. That's what we've been doing with my ds, and getting the physical issues under control has enabled him to RECEIVE the instruction he was being given with social thinking. Your ped/doc seems to be giving you really good advice there.

Since that doc's advice is otherwise pretty spot-on, I guess the question would be how much would improve with the med trial. He suggested an ADHD med, and you've got things that are straight ADHD issues. So if you do the meds, maybe you won't even need the PACE. The inverse is not true, that doing PACE would eliminate the need for the meds. You would do PACE and STILL need the meds, but you might try the meds and find you aren't wanting the PACE. That would be a huge savings, leaving you more money to put toward Social Thinking. Since the bulk of your concerns in your initial post point back to social thinking deficits, you really want to be putting your money there. His academics were fine before this one particular insane writing class, yes?

Yes, SLP=speech language pathologist. The social thinking site has a referral list of people they've trained at the ST clinics. If there happens to be someone like that near you, it would be a huge score. Otherwise, just start asking around. 

To me, the level of social thinking deficits you're describing are pretty spectrumy, and they are going to impact him significantly going forward into new, more demanding situations. Employment, college, etc. are really going to stretch him if you don't address those social thinking deficits. You won't be crying over low working memory, but you will be crying if he can't hold a job. Social skills and his social thinking will be the single biggest determiner of his employability, not his grades, not his accelerated math, etc. You don't want to know how much this happens that kids with social thinking deficits are super bright and literally can't hold a job. It's the thing to put your money into. Your ped/doc also suggested a neuropsych eval. That's pretty telling. Did you ask for that or he did? Around here, getting that diagnosis would open up the door for qualifying with the county board and receiving transition services, including job coaching, mentoring in the skills needed to hold a job, etc. Like I said, he might be super bright, but if he can't hold a job, that's what you'll be crying over. That paper diagnosis might be worth a lot to him by opening doors. This is the time to get very realistic. If your doc, who has actually seen him and interacted with him, is advising a neuropsych eval, you probably want to put some money there. You could do some calling around, like trying autism schools, etc., to see if you can get the evals done more affordably. Doesn't have to be a neuropsych.

Around here, really good educational therapists who are certified are over $100 an hour. You may be in an inexpensive area, or she may  not have as much training or experience. I would just be really cautious there. She's not a psych and she's benefiting financially from selling you on this good product. It's a good product, but she's gaining a lot with her advice. Around here, ed therapists consult by phone weekly, help students learn executive function skills, help them problem solve, coordinate care between doc and school for med management, etc. They stay busy consulting, not selling expensive products.

[abrightmom]

Okay, so the educational therapist has a great reputation in our community and I have no worries about their motivations. I'm not set on anything at this point! Just taking it in, weighing it out, and continuing to look around for the right PERSON whether that is a neuropsych or not. My health insurance is slightly whacked and even with a billing code could not tell me whether or not the services I desire are covered (the educational testing that psychologists perform). I do not have any personal recommendations from anybody that I know or from any circles we run in so I'm flying blind. There ARE people I can go see; some of the pediatric neuropsych groups have a minimum 6 month wait here. I haven't called the one my pediatrician recommended. He did NOT bring up ASD and neither did I. The appt. was fast/furious and focused on ADHD and how to manage it in the classroom. The answer was low dose meds so he wrote a prescription which I have. He also recommended the genetic testing and we did both tests. Results take several weeks and we are 2-3 weeks into the wait. We did a urine neurotransmitter test and the 23andme. 23andme has to be run through some sort of website .... we will have a follow up with the doctor after the results come in for both of those. 

He was NOT a stellar student before. In 8th he had a TERRIBLE time with schoolwork at home. We dropped all of his classes except for his English class through Wilson Hill Academy and his Algebra class. He needed a lot of help/input with both. It was during that time that I first sought an appt. to have him evaluated for ADHD. I called in the fall of 8th grade and wasn't able to get in with the pediatrician who evaluates for ADHD until several months later. Even then, I didn't leave understanding what I was dealing with. I understand it much better now. Admittedly, I was very ignorant.

I hear you on the social thinking (and there IS a social thinking trained gal in our area who is also an autism specialist). It's not off of my mind or a lower priority!! I DO hear the concern about future employment and the need for the social skills to improve. I AGREE with you on that.  While I'm trying to figure out who can do an evaluation (and then waiting around the months to get in) I do have access to some helps locally. His school recommended the educational therapist; her little group of ladies services our community here and they come highly recommended. I only had to pay $5 for the testing materials and she spent a lot of her time with us in the testing and in the follow up to discuss the results. His working memory is extremely low and that IS a concern and fits well into the ADHD diagnosis. So, it makes sense to me to address THAT if I can although I agree with you that it's a lot of $$ that could be better spent elsewhere. Here's the thing though! If it improve his working memory is that worthwhile?!? It's such a critical thing and I've watched it plague him his entire life (I didn't realize what I was dealing with; I feel horrible about it). CogMed seems to be expensive and it doesn't have good reviews so I took that off of my list. Her recommendation for rhythmic writing is similar (or perhaps the same) to what Dianne Craft models on her Smart Kids who Hate to Write DVD; it address visual motor learning which my son is LOW on and has been for years (showed up on two other tests when he was 8 and 11). ADHD has social stuff with as well as difficulties with written expression. The more I'm learning the more I see that ADHD is the bucket into which everything can be tossed. 

I've been desirous of a neuropsych evaluation for a long time; it frustrates me that it I can't get a straight answer from the insurance company! I've had some decision paralysis due to not knowing WHO to go to! Our insurance is also changing in the next month or so. I am NOT off the trail though and I am confident that we'll end up with someone somewhere. I have a lead on a group here that MIGHT open a door for us (and was recommended by the pediatrician); also considering our local university. The behavioral health clinic offers testing but I don't know that we'd see someone with a lot of experience. Price is right but if I don't have that expert who can pick apart the little things then it might not be worth it. 

Type of AssessmentCost

Assessments that take 2-4 hours to complete, such as:

• Intelligence testing (i.e. IQ only)
• Single personality assessment (i.e. MMPI only)
• Dementia Screening
• ADHD screening (only useful to RULE OUT ADHD)

$125

Assessments that take 4-8 hours to complete, such as:

• ADHD evaluation
• Learning Disability assessment
• Comprehensive Personality assessment

$200

Assessments that take 8-12 hours to complete, such as:

• Combination Learning Disability, ADHD assessment
• Neuropsychological assessment
• Comprehensive Personality and Intelligence assessment

$350

[PeterPan]

How did I miss that you're in Oregon? We visited Oregon before my ds was born. It was amazing and so diverse. We drove the coast going south, all the way from Washington to the redwoods, then we drove back up through the middle. The cinnamon rolls were AMAZING. We have no board emoticons, or I'd give you a nice drooly one right now. :D

Ok, I'm rambling too much, so I'm condensing here. 

-does your school have intervention services? If he's having significant academic issues, have you thought about whether he'd be better placed in a different school? Whether he'd benefit from an IEP or 504?

-Have you considered evals through the ps? They have the federal obligation to identify students in their district with disabilities affecting their ability to access their education. They could do a lot of the same stuff as the neuropsych and the price would be FREE.

-check to see if your state allows or compels the ps to write IEPs for students not enrolled, dunno. 

-ask the behavioral clinic who is doing the eval (masters, phd, whatever), whether it generates a report. There are combo achievement/SLD screening tools that they are probably running. They're legit. You could do this eval and then closer to college do a psych eval for paper trail for accommodations.

-be aware of what the clinic eval is not getting you. I would be most concerned about the ASD screening. You could find a psych who specializes in it to address that question. They'll use forms (GARS, ADI-R, etc.) but those can be difficult if no one is seeing the student in sufficient chunks and they want others, not the parents. So then you'd be looking for the ADOS. I'm a huge fan right now of the ADOS plus forms, because it cuts through those issues.

-We've had threads on how to bump working memory. Yes you can do it for free. Do a google site search.

-We've had threads on Cogmed. Feedback was it was great but the dc regressed when they stopped and still needed meds. That's how working memory is. You're going to lose whatever you aren't using. The EF bumps will hold, yes, but there are more ways to do that.

-Google site search to find heathermomster's instructions on metronome work and you'll find ways to combine working memory and metronome to target EF and build WM for free.

-Cusamano has books that would help you. They're on amazon but going oop because she died, sigh.

If you want, feel free to elaborate on what was going on with his academics.

 

[abrightmom]

The urine neurotransmitter lab results are in. I don't know what these markers or ranges mean yet. The doctor recommended some supplements. I asked him if the methylphenidate prescription is the right one based on these results (we have it but haven't filled it). They will send me a report and a copy of all of the results next week.

Norepinephrine is low. His is 12.3. Their normal range is 17-90. It is implicated in ADHD. 

Epinephrine is low. His is 1.5. Their normal is 1.5-20. I read that people with ADHD have higher Epinephrine. ? 

Phenethylamine is low but I didn't catch the numbers. I DID research this and found that it is a biomarker for ADHD. 

[geodob]

Phenethylamine is involved with the secretion of Epinephrine,  Norepinephrine and Dopamine.

So that low levels of Phenethylamine, will result in low levels of Epinephrine,  Norepinephrine and Dopamine.

[PeterPan]

I'll bite. What were the supplements? Were they run of the mill vits or anything interesting?

It looks like he's using the phenethylamine levels to confirm his diagnosis of ADHD, which is interesting when you think about it. Just looking at it briefly, it seems like using the methylphenidate, especially if time-released, would be much safer than the supplements (PEA) people are taking. And given that he gave you a scrip for it, looks like that's what he's thinking. So that's why I'm curious what the supplements are meant to do. :)

[Pen]

I think it if were my situation to be dealing with that I'd go ahead and fill the scrip for a medicine that might help with ADHD -- get him started on that and then reassess the situation as his response to it becomes known. If he has a bad reaction to get in touch with the pediatrician right away. Otherwise to keep him on it long enough to see if it helps him. Social issues also go with ADHD often, so it may help him with many issues he now faces.

[Pen]

PeterPan -- I'm also in Oregon. PS allows concurrent enrollments for for homeschoolers to have IEPs. If homeschoolers choose not to go that route they can have a PEP Private type EP which is paid for and administered privately. I don't know about private school - public school overlaps with IEPs. But to me the most obvious thing seems to get the boy on to the ADHD medicine the Doctor prescribed. Or are there some major reasons not to do that I don't know about. I tend to be a pharmaceutical avoider, but in this casethe already prescribed pharmaceutical still seems to be like it would be the route I'd take.

[PeterPan]

9 minutes ago, Pen said:

PeterPan -- I'm also in Oregon. PS allows concurrent enrollments for for homeschoolers to have IEPs. If homeschoolers choose not to go that route they can have a PEP Private type EP which is paid for and administered privately. I don't know about private school - public school overlaps with IEPs. But to me the most obvious thing seems to get the boy on to the ADHD medicine the Doctor prescribed. Or are there some major reasons not to do that I don't know about. I tend to be a pharmaceutical avoider, but in this casethe already prescribed pharmaceutical still seems to be like it would be the route I'd take.

That's really interesting! In Ohio we have a scholarship system where you service the IEP with private providers. It's what we use and it has been amazing. It sounds like your Oregon program is good too and would be something for the op to look into. It can be a huge pain in the butt to go through the IEP process, but you actually do learn stuff. And if you have access to funds for private services, you can look into group social thinking classes. We're doing that now with my ds, and they're a really nice thing, better than I had thought they would be. Some of the kids will be on the spectrum and the others are straight ADHD, yes.

If it matters to the op at all the thing I found most compelling at this age, when we were thinking through meds, was the driving issue. Someone else had a thread a few years ago where they said the stats on unmedicated ADHD drivers were TERRIBLE. Much, much higher risk of accidents. And after I thought about what I had seen over the years, I realized it probably was true, sigh. Given that he's 15, driving will probably be on your radar.

The other thing is to consider a time-release, extended-release med. They're more pricy, but they keep the levels more stable. Some of the new pro-drugs are made such that they can't be abused either. To me that was a reason I didn't want my dd on a 4 hour straight methylphenidate dose in college. At home, we would know what was going on, but in college I just really didn't want that temptation. So when you move up to the 12 hour meds, pro-drugs, etc., it really controls that more tightly.

But I get that it's a hard choice. We held out a long time. We had a good run without them, and the change turned out to be a good one, with no bumps at all. She was fine with the first med she took and needed minimal dose adjustment. Sometimes it really is that easy. 

[Pen]

What are negatives of PEA other than migraines if one tends to get migraines from PEA containing foods (or have high bp or cannot take it due to PKU)?

[Pen]

I think Oregon has much less that it provides than what you have described for Ohio where you could get a lot outside of the school paid for. But it is not bad. Especially if there are some helpful individuals at the local public school since a lot can come down to just one person with some help to offer making a big difference in the outcome for a particular kid.

[PeterPan]

In Ohio, to get the scholarship you give up your FAPE. So you're basically getting what the ps would have gotten, minus a $5k cut they get for keeping the IEP up to date. 

So no, you don't get a ps education AND the scholarship, lol. It's either/or. But it's a huge help and gives a lot of people choice. It means we have a thriving market with autism schools, providers of therapies, etc., because there's money to pay for it. It let's us decide where to focus the money and where to do things ourselves to make the money go farther. 

[abrightmom]

On 4/14/2018 at 5:06 AM, PeterPan said:

I'll bite. What were the supplements? Were they run of the mill vits or anything interesting?

It looks like he's using the phenethylamine levels to confirm his diagnosis of ADHD, which is interesting when you think about it. Just looking at it briefly, it seems like using the methylphenidate, especially if time-released, would be much safer than the supplements (PEA) people are taking. And given that he gave you a scrip for it, looks like that's what he's thinking. So that's why I'm curious what the supplements are meant to do. :)

Doctor and I have yet to chat; he'll be back Monday and has some questions that I relayed to the nurse. Hoping for some clarification on what these results mean and why he is recommending certain supplements. I also asked if the methylphenidate is appropriate according to these test results.

The nurse told me the dr. recommends adult doses of Vitamin C, SamE, tyrosine and theanine. IDK why though :). 

[abrightmom]

22 hours ago, Pen said:

PeterPan -- I'm also in Oregon. PS allows concurrent enrollments for for homeschoolers to have IEPs. If homeschoolers choose not to go that route they can have a PEP Private type EP which is paid for and administered privately. I don't know about private school - public school overlaps with IEPs. But to me the most obvious thing seems to get the boy on to the ADHD medicine the Doctor prescribed. Or are there some major reasons not to do that I don't know about. I tend to be a pharmaceutical avoider, but in this casethe already prescribed pharmaceutical still seems to be like it would be the route I'd take.

Pen,

What is a PEP Private type EP? I am investigating IEP and 504 here; our private school would heed them but they don't help us get one. I don't even know how it works! Our private school recommended that I talk to the public school district about an IEP. I think we need a more definitive diagnosis and I'm certain I'll get one. He's dealing with something in the arena of dysgraphia or written expression disorder or a specific learning disability. I think the specific learning disability is an umbrella for a variety of disabilities. 

I have contact info for the director of the special education services for our district. That's item number 1 on my to do list for Monday. :) 

 

[abrightmom]

22 hours ago, PeterPan said:

 

If it matters to the op at all the thing I found most compelling at this age, when we were thinking through meds, was the driving issue. Someone else had a thread a few years ago where they said the stats on unmedicated ADHD drivers were TERRIBLE. Much, much higher risk of accidents. And after I thought about what I had seen over the years, I realized it probably was true, sigh. Given that he's 15, driving will probably be on your radar.

 

It does matter! He isn't interested in getting a permit yet. :) I'm paying attention to those stats and taking them seriously. 

[abrightmom]

On 4/14/2018 at 5:06 AM, PeterPan said:

I'll bite. What were the supplements? Were they run of the mill vits or anything interesting?

It looks like he's using the phenethylamine levels to confirm his diagnosis of ADHD, which is interesting when you think about it. Just looking at it briefly, it seems like using the methylphenidate, especially if time-released, would be much safer than the supplements (PEA) people are taking. And given that he gave you a scrip for it, looks like that's what he's thinking. So that's why I'm curious what the supplements are meant to do. :)

What is PEA? 

 

[PeterPan]

2 hours ago, abrightmom said:

Doctor and I have yet to chat; he'll be back Monday and has some questions that I relayed to the nurse. Hoping for some clarification on what these results mean and why he is recommending certain supplements. I also asked if the methylphenidate is appropriate according to these test results.

The nurse told me the dr. recommends adult doses of Vitamin C, SamE, tyrosine and theanine. IDK why though :). 

Well you can start googling them. Vitamin C is good for histamine levels, adrenals, etc. The sam-E is a natural anti-depressant and methyl donor. If your ped is thinking your ds is depressed, it would be a thing to try. Haven't done the tyrosine, but you can google it. The theanine is commonly used for anxiety.

Contraindications to that stuff? Um, not having depression or anxiety. Having overly high methyl levels to start with. If your methyl levels are too high anyway (which can show up as irritability, aggression, bipolar-like symptoms, etc.), you'd want to be careful. Did you say he ran genetics? You can download the raw data from 23andme and run it through promethease, knowyourgenetics.com and other places yourself. I'm surprised he didn't mention vitamin D. That would be a super common, super important one to check. You can input your data for FREE at KnowYourGenetics.com and it kicks out a report looking at the most common things. If your ds is an undermethylator AND is having those symptoms of anxiety and depression, the supplements he's suggesting would be reasonable. Of course then you'd wonder if he looked at the TPH2 gene. If he's low in 5-HTP, that would cause similar symptoms (anxiety and depression). 

In other words, I'd be making sure you don't have a 5-HTP issue before doing the sam-E and theanine. Just me. I'm not a doctor, but this field is so new they're all hacks anyway.

I still don't get why you're asking if the methylphenidate is appropriate. That's what the low epinephrine, etc. labs were telling you. It's totally indicated. The question is only how you want to treat the depression and anxiety the ped seems to be identifying. I would download the raw results of your genetic testing and load it to other places and run it through stuff yourself. 

[abrightmom]

5 hours ago, PeterPan said:

 

I still don't get why you're asking if the methylphenidate is appropriate. That's what the low epinephrine, etc. labs were telling you. It's totally indicated. The question is only how you want to treat the depression and anxiety the ped seems to be identifying. I would download the raw results of your genetic testing and load it to other places and run it through stuff yourself. 

I'm not entirely sure WHAT the methylphenidate is targeting. I mean, it is for ADHD but it does something to his brain and that's what I want to figure out. Does he need it? It sounds like it might be just the thing for him. I'm still learning. :) If the lab results support using the methylphenidate then it makes sense to me to try it. It didn't make sense to ME to try it based on a doctor diagnosing my son with ADHD based on a paper questionnaire I filled out. *I* believe he has it based on my years with this kid but putting a pharmaceutical into play is more significant for me. I also don't believe the MEDS are going to fix the SCHOOL problems in terms of his writing issues. I believe we're looking at dysgraphia/written expression disorder and his EF issues. I do believe that if the meds are the right fit for him then it could EASE everything in a way that would allow him to remediate/learn/grow where he is at with written expression. The school stuff is so frustrating. He is flat out failing the CS Lewis class and English is going down. He is even losing steam with Biology; he was loving it when he's motivated by what he's learning he seems to perform better. Now they're learning about a topic he HATES and is frustrated with (he calls it tripe) and he rants about what a waste of time it all is. 

On a positive note they just finished their theater production of A Midsummer Night's Dream. It was performed in a beautiful park amphitheater and it was POURING. He was fantastic as Oberon and I saw so many social positives for him. It exhausted him and he has nothing left for homework. I don't have the drive to hold him to it. The school doesn't really give the kids room to turn things in late if they're in theater and it is dress rehearsal/performance week. That bites.

I don't know. My head is spinning. THANKS for working it through with me. 

We didn't discuss depression or anxiety!!!! It would be weird for him to treat something we've not discussed or diagnosed. So, maybe there are other uses for those supplements? 

We did 23andme but the results won't be back for a few weeks yet. 

 

[PeterPan]

Well you can google how ADHD meds work. Just google it. You'll probably find cool resources. There are two classes of stimulants, and in spite of all the fancy names all the stimulant meds are one or the other. From what I've been told, they're going to stimulate multiple parts of the brain and act sort of as a dopamine uptake inhibitor. They're going to bump the levels of dopamine, making that ADHD cascade work better. When the med wears off (4 hours, 12 hours, whatever), they'll get some rebound for about 30 minutes as the body gets used to being on its own, without the meds propping up those levels.

No, there is not technically a "methylphenidate deficiency". The low dopamine comes from the other low neurotransmitters your doc tested. They're low. Interjecting in that process will improve things. Most people who benefit from them see improvement IMMEDIATELY and will be pretty much of the "OH MY LANDS WHY DIDN'T WE TRY THIS MUCH MUCH EARLIER" camp. Almost guaranteed ,that's what will happen. With your labs, what you're describing, that will be a likely response. That's why to people on the outside we're like ok, your kid definitely has the ADHD, you have the scrip, and the kid is failing his classes, why aren't you using it, kwim? Just saying. Like I'm totally not judging, because we held out a super long time with my dd too. I get it. But I'm just saying when you get to the other side of this that's probably what you'll be saying.

Anxiety is obvious and he doesn't need genetics to see it. The whole why bother gig could be what the doc is trying to improve with the sam-e. 

It might be that the doc is using these things to treat until he gets the genetics. That's what we did with my dd. I put my dd on sam-e. It's good stuff. It's GOOD. It's really, really, really, really good. 

You paid the guy for advice, so maybe just take his advice? The list he is telling you to take is normal stuff, treats stuff that it sounds like is going on, is SAFE stuff, and it will probably make noticeable improvements very quickly. You might as well try it. And then, in 3-4 weeks maybe you have the results back from the genetics and he takes more time to sift through it and then it tweaks your program. But his recommendations would give you improvement NOW. 

Yeah, the theatre stuff is hard. My dd did that. She really enjoyed it, but it was really hard on her body to keep this crunch hours. She just got elected to new positions in the campus structure, so I think she's going to toss her theatre job entirely. She's healthier with a more consistent schedule. 

If you want an alternative to the sam-e plus theanine, you could do 5HTP. But I didn't say that. I'm just saying you could. But the sam-e is readily available, not terribly expensive, and will work. I get that you're scared, but I'd at least do SOMETHING. This doc is outlining a game plan for how to approach a bunch of things he's legit seeing. They can SEE it. What you're describing matches what he's prescribing. It makes sense. You won't know till you take the plunge. 

What are your alternatives?? What if you're like no, I'm scared, I don't know what these meds are. Ed therapist, CBT (cognitive behavioral therapy, talking about it and trying to think better about problem solving). At some point, real physical problems exist. Until you have the genetics, you won't know for certain, but odds are the genes are in there. It's not a crime to take something to feel better and function better. 

As parents, we make hard decisions. These ARE hard decisions, yes. But that's why we're the parents, because we're gonna say we love you most and if this can help we're gonna make the call that it's time to take a chance. The other thing you can do is talk to him and ask HIM what he wants. He's 15. I asked my dd. Your ds is old enough to be asked. There will need to be some buy-in. Of course he you think he'll say flat no due to rigidity, then don't frame it that way. But it might make you feel more assured that something needs to be done if you talk with him and help him voice HIS frustration. 

[Pen]

A PEP is a Personal Education Plan. You could call the office that you are registered to homeschool the other kids with to ask about it. But I don't think it will probably help you unless you decide to homeschool him. And my own choice was to use the IEP plus homeschooling with dual enrollment at public school route.

[Pen]

SAMe is something I have taken and is helpful for a number of things, but maybe in his case might be that it is helpful for focus if the doctor does not know about depression. Theanine is supposed to help with focus + calm. Tyrosine is a neurotransmitter (dopamine) precursor and is sometimes helpful for people with ADD. Not sure what the C would be supposed to help him with, but it would not scare me to use it. I agree that vitamin D could use checking. So might B vitamins. So might the 5HTP as serotonin precursor... But it seems like the doctor has already given you a reasonable place to start. So it seems like starting there is the sensible thing to do. The lab results you mentioned sound like they tend to confirm the doctor's view that your son has adhd and thus tend to confirm that it would be appropriate to try him on methylphenidate. SFAIK. So if your fear was that the only reason to give the medicine was your own paperwork answers, that is not the case now. Likely it already was not the case and the doctor may well have formed some opinions of what to recommend for your son based on his own observation and experience. It is true that a medicine is unlikely to suddenly turn someone from a halting writer into an excellent and confident writer, but it may put a stop to a freefall into failure and ensuing depression, and may allow your son to have the emotional focus and resilience to deal with ... whatever he needs to deal with... learning to write more easily ... coping with frustration... coping with things that do not highly interest him... If he gets on to the medicine, and if it is one that works for him, he might even be able to start coping with his current school work situation enough to pass classes like CS Lewis. He may be "unable" to do CS Lewis class etc. truly in terms of lack of writing ability some other LD, but it is also possible that he would be able to do it (even if only at a C pass level) if he has the emotional (the neurotransmitter, if you will) ability to cope instead of just to give up. And that itself could be huge for him! These are not "take one dose or even one week of this medicine and all is well" sorts of situations. So the sooner you get him onto the medication(s), the sooner you will all see whether it can help him, or whether he needs dosage tweaking, or a different one, or some combo. You may start to get a sense of what IS ADHD by what improves, and then get a sense of what issues remain that are things other than ADHD and that will require other pharmaceuticals and or vitamins and or amino acids and or interventions and or scaffolding and or ______ . You may get a sense of what methylphenidate does for your son, whether it helps tremendously, or whether he has side effects, or whatever is his own personal reaction, rather than theoretically what it can do. Theoretically though, one thing it can do, apparently, would be to help normalize the levels of neurotransmitters that were tested as being low. Personally, I think your ideas of calling your SPED person, etc are fine, but I would start with doing what the doctor suggested in terms of the prescription and supplements and put that as your first thing tomorrow priority to go get the scrip filled, the supplements bought, and your son started taking them as the doctor has recommended.. Your son will probably need help remembering to take them.

[Pen]

PS I am sorry about the dense run on paragraph. I had had this problem before, then it got fixed briefly. But since the forum revamp, I again am stuck with not being able to put in normal spacing of my choice.

[Pen]

"That's why to people on the outside we're like ok, your kid definitely has the ADHD, you have the scrip, and the kid is failing his classes, why aren't you using it, kwim?" I AGREE!!!

[PeterPan]

Ok, now you've got me on this total rabbit trail wondering if tyrosine has a gene connected to it with a glitch, hmmm...

[PeterPan]

https://universityhealthnews.com/daily/depression/dopamine-supplements-for-improving-mood-and-motivation/