11 yo ADHD dd about to begin counseling; suggestions?

[Mama Anna]

Background:  I've posted a couple times about my two youngest daughters and their special needs.  After going through the process of getting the 8yo dd evaluated and diagnosed, I decided to take the 11 yo dd in for diagnosis, too, as her ADHD symptoms have gotten worse with puberty.

The ped looked at 1 1/2 pages of assessment forms from me and dd's ballet teacher and said, "Yes, it looks like she has ADHD Inattentive-type.  I suggest we begin with a 5-mg dose/day of meds."

I back-pedaled a bit, mentioning that I was hoping for a referral for a full evaluation and was told, "Well, that will take quite a while because the system is backed up.  If you'd like counseling, I can give you a list of counselors in the area."  I stuck with my request for a full evaluation because dd has previously been diagnosed with a proprioceptive disorder and it seems to me that there might be more than ADHD going on.  The ped gave me a referral and we had a good discussion of how getting a prescription would work in case we change our minds about the meds, then parting on excellent terms.

Three weeks later, I got the intake call from the nearby Children's Hospital Neuro-psychology department and they repeated the ped's warning about an evaluation taking a long time to get.  However, they offered me counseling for dd11 while we're waiting for the full evaluation.  Dd11 has increasing EF difficulties (which are making life difficult for her), so I accepted.  Her intake appointment is next Tuesday. 

Questions:

1.  What should I expect out of this counseling?  I've told dd11 that it's likely to be someone saying, "What's the problem?  Hmm . . . Well, have you tried this strategy?  Try it out for a few days, then let me know how it works."  Is that accurate? 

2.  When dd8 was diagnosed with ADHD, the evaluator told me that a positive diagnosis of ADHD can be made when the Working Memory and Processing Speed scores are significantly below the total IQ score.  I've come across programs that promise to help those areas (Notably, Brain Balance Centers and Little Giant Steps).  These programs are high-investment/cost and I don't know how useful they really are in the long run, which means that dh is reluctant to commit.  Will we be likely to run into similar therapy options with a counselor in a pediatric neuro-psychology department?  (In other words, try something out, see what works and what doesn't, and then invest in a program with more confidence?)

3.  Can anyone give me specific ideas of questions to ask, subjects to address, etc. in the intake appointment?

I guess I'm just wishing for some IRL friends to tell me they have my back and are with me . . .  it's been slow getting to know the HS community since we moved here 2 years ago.  :)

TIA!!

Mama Anna

[PeterPan]

Well if you want to be more blunt, if you want something more than ADHD sorted out you might as well move on to someone who can do the ADOS. Getting anything more than ADHD (by which I assume you mean ASD), requires forms or an ADOS or both. The bummer about forms is they're limited to what you observe and sometimes the psych wants other people to do them. I'm a fan of the ADOS these days. So if you want that answered, look for someone doing it. It's not necessarily a common thing, so you might have to look a bit. 

As far as the counselor, they'll probably be able to talk about Social Thinking issues, Executive Function strategies, etc. They may be trained in CBT. They might have their own terms, but that will be the jist. It can be good stuff, and it's useful even if you decide to do meds later. If they're able to run screening tools, they might have the BRIEF or another EF screening tool. They might even have some spectrum tools (GARS, ADI-R, etc.). You'll just have to see.

Usually counselors try to build report and they'll probably spend time getting to know her and seeing what she likes to do, what her strengths are, and where she'd like help. They're going to focus on problem solving, so they're going to try to help her articulate where she's having problems and would like strategies. They're going to be looking for ownership and strategies she can use for herself. They might try to teach her some self-awareness strategies like mindfulness or give her a practical list of things she can do before she begins working to feel more focused. They're going to listen for where problems are occurring in her day and help her problem solve.

Just as an aside, you might like to look at 360Thinking. They have a lot of practical stuff for ADHD and EF issues. 

As far as Brain Balance, Little Giant Steps, etc. some of that is really basic stuff like working on retained reflexes. Has she been to OT for her sensory issues? Have you identified and worked on retained reflexes? Bodywork like that can help, but it only gets you so far. She'll still be ADHD and still in need of strategies and probably at some point meds.

Just as my personal two cents, I think you should take seriously any gut sense you have that her sensory plus ADHD issues = more than ADHD. ADHD and ASD merge at a point, and girls are notoriously hard to diagnose and underdiagnosed. It would not be overkill for you to want an ADOS. It would, in fact, be the most sensible way to answer the question. And the person who can run the ADOS might also be a good person to continue with for problem solving strategies if you don't find this counselor helpful.

Keep asking questions. Hopefully your appt will be a good starting place at least. 

[Lecka]

I would guess you are looking at CBT.  Learning more about ADHD.  Coping skills.  

That’s what I would expect from a counselor.  

I hope it goes well ?

[Lecka]

Some of the other things you are mentioning are more of OT things.  They help kids who are weak in those areas.  

I am on the skeptical side for kids who are doing well in regular activities like ballet and don’t have any noticeable coordination or handwriting type of issue.  That’s just me.  

If she is struggling in ballet and then frustrated and that exacerbates her ADHD symptoms — that is different.  

Then another thing is there are other OT-type activities kids can do that can help them focus before they do schoolwork.  That does not promise permanent cures, though.  Those overlap with the Brain Balance and Little Steps stuff, I think.

There are things where you can buy parent guides, too, it is cheaper.  

Edit:  I haven’t used it or seen it, but for example http://stores.diannecraft.org/1-brain-integration-therapy-manual/ is similar to the OT stuff that the OT-type programs have.  

[Lecka]

My two cents on OT (two of my sons have qualified for OT) is ——— it has been good, it has been totally worthwhile, but it hasn’t done what I hoped/expected/wanted it to do.  I have heard some very optimistic predictions that didn’t pan out.  But still it has worked out very well.  I also think for a lot of things manuals are doing the same thing as OT, anyway.  

I definitely don’t think a Brain Balance Center does more than OT.  They charge an arm and a leg though and literally I know sometimes they are doing the same things as a school OT.  But  if it works out to make sense I think it can still make sense at times.

 

[Heathermomster]

When DS worked with a CBT for EF related difficultiies, the therapist taught achievement motivation, which breaks down the steps of goal planning.  DS started using BrainHQ and mindfulness exercises on a reg basis for about 18 months and then we quit.  CBT helped me understand DS better so that I could support him better. As an outsider, the CBT could convince DS to try things that he would not normally consider.  DS finally saw his need for certain supports and planners.

My DS has worked with both an OT and ped PT. The ped PT was awesome and used weight training, balance, crossbody, and agility exercises with my son.  DS finally learned to swim and  sit normally at a desk after pt work.  The OT mainly used IM (interactive metronome).

Don’t be expecting any miracles because the ADHD and EF issues are the result of an organic brain condition which may be improved upon but will be present for life.   

[Mama Anna]

Thanks to all of you who have replied! 

Peter Pan, I'm not concerned about ASD (Dd8 is on the spectrum and also diagnosed with ADHD, so I have a bit of an idea of what that looks like) because there are no difficulties relating to others emotionally or being flexible with routine, possessions, etc.  It's just that . . . between her continual search for sensory feedback, her marvelous creativity, and her continual ability to forget/not hear/not do stuff/get distracted - is it really possible that ALL this is just ADHD with a smattering of Proprioceptive Disorder?  Is Proprioceptive Disorder typically comorbid with ADHD, or is it in another can of worms that we need to open up and explore?

Retained reflexes:  What is it all about?  I've heard about them and tried reading up on them, but the site I found didn't explain much except that they were incredibly important and dealing with them could change your child's whole life, etc., etc..  Could you suggest a better one?  One that details the research behind them and how they work?

Lecka; She's not stellar at ballet, but she works hard and enjoys pushing herself at it.  She's practiced bouncing a superball off the floor and catching it in her hand until she's pretty good at it (It took her several months of practice), but she's not good at catching a volleyball if you toss it to her.  At all.  On the other hand, she loves handstitching and developed good fine motor skills earlier than our other girls.  Of course, she's always had a tendency to accidentally break things - it's always been hard for her to tell "how hard is too hard."  Her handwriting isn't great, but it's legible.  She hates the act of writing, though, and I started her on learning to type this last year.  Basically, fine motor skills are excellent on anything in arts or crafts, but hard for her in schoolwork - unless I incorporate drawing diagrams/pictures/doing projects, etc.  (Which I do.  Often.)  She takes piano from me and struggles with it, but I can see some progress in her ability to play with hands together/opposite.

Basically, I've got a kid who has struggles but who is bright, persistent, and stubborn enough to cope with some of her struggles, leaving me uncertain as to exactly where they are and what's wrong.  We've been tweaking things, making allowances, trying to think outside the box, etc., for years, but our home-grown stuff isn't sufficient now that puberty is effecting everything.

Thanks for your thoughts on Brain Balance, etc.  I'd love to get some more OT for her (she had a few sessions after her PD diagnosis), but I'm unsure how to do that in our present environment.  Thanks also for giving an idea of what the appointment will be like.  You guys are great!!

Mama Anna

[PeterPan]

Proprioception is going to fall under SPD. If she has ADHD and SPD, sure you could be putting ASD on the table. I wouldn't assume it will look like another dc, even in your own family, just saying. It could look very, very different. What's with the not hearing? You want her screened for APD?

The easiest thing to do, honestly, is put the dc on meds and see what falls away. Whatever is left is what you treat next. The meds can help with mild APD issues, will bump processing speed, and will help her be more functional. Then if there are social thinking deficits, issues with transitions, difficulties with breaking down tasks into parts, etc., then that's stuff you can work on. There's not really a benefit to waiting on meds at this age, frankly, and only harm. The tasks are becoming more difficult, and she's getting maxed out. If the dc were 5 or 8, you'd just work around it because it would be merely attention. But as the tasks become more complex, it's going to become harder for her to cope. So you're really setting it up as how much will we let you drown and fail before we give you the tools that let you succeed. She probably won't be able to get there with cognitive strategies alone. 

We finally started meds in high school with my dd. I'm just telling you, having btdt, there's not really a benefit to waiting at this point. You've already done all the modifications. You can do the meds AND the counseling, and together you can get to a really good place.

For the retained reflexes, Pyramid of Potential sells a dvd. Or look on youtube. Yes, it could be huge.

You're worried about her proprioception, but how is her sensory? Does she have issues with sensory defensiveness or finding things uncomfortable or overwhelming? Is she sensory-seeking? Usually kids with proprioception issues are having sensory issues, because the body is trying to get input to figure out where it is. 

Has she had her eyes checked by a developmental optometrist? She could have developmental vision issues, which would explain the drawing and writing issues. Kids with retained reflexes, etc. often have vision issues because the visual development depends on the reflexes.

[Lecka]

The piano is probably really good for her.  I think you might try the OT type things if you want, whatever is available and reasonable.  But doing things like she is already doing are really good, too.  

I hope the appointment goes well!  

[Mama Anna]

On ‎5‎/‎23‎/‎2018 at 11:43 AM, PeterPan said:

Proprioception is going to fall under SPD. If she has ADHD and SPD, sure you could be putting ASD on the table. I wouldn't assume it will look like another dc, even in your own family, just saying. It could look very, very different. What's with the not hearing? You want her screened for APD?

I've assumed that the not hearing is due to hyperfocus or distraction.  She can fade so quickly - just half a second ago she's interacting with me on subject, we're moving along, then <poof> she's absent and I've got to pull her focus back in, hand-over-hand, so to speak.  Of course, she is now able to do her work on her own on good days.  (Which is good because her younger sister can't.)  But on bad days, she can't focus on anything unless I'm working parallel with her and even then it's really tough.  I'll ask about APD - it might be contributing.  Autism, though . . . it just doesn't fit.  She's the most laid-back, socially aware, empathetic person in the family - including myself and dh in the analysis.  When she gets overwhelmed, it's a fairly typical "go cry on my bed for a while" type of overwhelmed, and it only happens a few times a year, even in puberty.  (It didn't used to happen at all, really.)

The easiest thing to do, honestly, is put the dc on meds and see what falls away. Whatever is left is what you treat next. The meds can help with mild APD issues, will bump processing speed, and will help her be more functional. Then if there are social thinking deficits, issues with transitions, difficulties with breaking down tasks into parts, etc., then that's stuff you can work on. There's not really a benefit to waiting on meds at this age, frankly, and only harm. The tasks are becoming more difficult, and she's getting maxed out. If the dc were 5 or 8, you'd just work around it because it would be merely attention. But as the tasks become more complex, it's going to become harder for her to cope. So you're really setting it up as how much will we let you drown and fail before we give you the tools that let you succeed. She probably won't be able to get there with cognitive strategies alone. 

Thanks.  I don't want to hear this, but I know I need to.  Her issues aren't as severe as some people's are (I think - I don't know how much her persistence and brightness mask), so I keep telling myself that she just needs a little more support . . .  I know she doesn't want to go on meds, but she's still at an age where I can talk her into it if I need to.  I think.

We finally started meds in high school with my dd. I'm just telling you, having btdt, there's not really a benefit to waiting at this point. You've already done all the modifications. You can do the meds AND the counseling, and together you can get to a really good place.

I've read the suggestion on this board that it's good to start counseling and then add meds, which is one reason that we haven't started meds yet.

For the retained reflexes, Pyramid of Potential sells a dvd. Or look on youtube. Yes, it could be huge.

Thanks - I'll do that.

You're worried about her proprioception, but how is her sensory? Does she have issues with sensory defensiveness or finding things uncomfortable or overwhelming? Is she sensory-seeking? Usually kids with proprioception issues are having sensory issues, because the body is trying to get input to figure out where it is. 

She's a sensory-seeker, big-time.  Rarely are things too much; she loves tight clothing, tight socks, tight shoes, fuzzy anything . . . having every member of the family sit on top of her on the couch (talking about a combined 400-450 lbs, or so), etc.  Noise can sometimes be a problem for her, but given the fact that the rest of us are pretty sensitive, she doesn't usually end up in noisy situations.

Has she had her eyes checked by a developmental optometrist? She could have developmental vision issues, which would explain the drawing and writing issues. Kids with retained reflexes, etc. often have vision issues because the visual development depends on the reflexes.

No, she's only seen a typical optometrist.  Her drawings are beautiful - so is her handwriting when she wants it to be (and "draws" it).  She doesn't even take terribly long at drawing in art and she loves doing it.  I think the handwriting difficulty is due to a processing speed difficulty - having to think, spell, form letters, etc. all at once.  (She's never had trouble dictating narrations, it's just since she's been on her own for them that this is more of a problem.)  I can ask the counselor about it though - thanks for the idea.

Bless you, Peter Pan, for the time you take to render such detailed answers on this board!!

Mama Anna

 

[PeterPan]

I'm surprised you think her ADHD isn't severe. It sounds pretty significant the way you're describing it. I'm surprised she doesn't want help. Has someone said something to her that makes her scared of the meds? She would only have the information she has been fed or the experiences she's had with kids around her. Meds could be very good in her situation as they would address the specific problems you're having. Is she having anxiety? Some people with ADHD find their anxiety improves with the meds because the meds improve competency. If you're having trouble functioning, then your stress (and hence anxiety) goes down as your function improves.

You can also have anxiety as a genetic component, sure. There's a gene, TPH2, that when it is defective decreases the production of 5HTP (which helps anxiety) from tryptophan. So if that gene is defective, yes she's going to be flat prone to anxiety. You can have the ADHD *and* the anxiety too. But just as a statement of what would happen to her anxiety if you put her on the ADHD meds, it might actually improve. What remains then would be the chemically caused anxiety, which is of course treatable by addressing the 5HTP deficiency.

Is she having trouble understanding in background noise? Like if she's in a noisy restaurant or store, does she seem to go deaf? That would be your huge huge red flag for APD issues. Some people describe APD as ADHD of the auditory system. I'm taking my dd out to CO next month for better testing for APD to settle the question once and for all. This does not have to be one or the other. You can have some of this, some of that, a bunch of things.

It sounds like her art is an area of strength for her. :)

[saw]

I don't know if this will help, but I'm looking at a CBT counselor for DS 11, with ADHD. I suspect there is something else going on, because his profile doesn't really fit. At the recommendation of the ed psych who did his eval a year ago, we got a "coach" who supposedly does not do therapy but works on specific skills. DS and the coach had once weekly sessions plus twice weekly ten minute checkins by Skype. We were also referred by the ed psych to a psychologist who supposedly worked at the NIH and is an "expert" on nutritional neuroscience. Months later, we are no further but a lot poorer! 

What I've done now is find an OT because I strongly suspect SPD. I've also sought out a CBT therapist. She of course wanted me just to sign on and bring DS in for his intake etc etc. I have responded by telling exactly what I need: a plan, with specific goals and measurable outcomes. I've asked her experience in working with 2E kids. I've told her that we are not going to be delving into adoption issues (because DS isn't really interested in going there) and that we homeschool (if that's an issue for her, like it was for the coach, we won't hire her). I feel quite strongly we've been led down the garden path by previous therapists who have all come up with recommendations (mostly very expensive and unworkable and based on cursory evaluations of my son) but no practical solutions, and I've decided to treat any therapist the way I'm treated in my own professional life by my clients -- they want to know my background, my experience and what I propose to deliver to solve the agreed-upon problem -- before they hire me. 

Not sure that helps, but I'm feeling quite frustrated and let down by the system. 

[PeterPan]

There's also the piece where we bring in structure and supports at home.

[Heathermomster]

6 hours ago, saw said:

I don't know if this will help, but I'm looking at a CBT counselor for DS 11, with ADHD. I suspect there is something else going on, because his profile doesn't really fit. At the recommendation of the ed psych who did his eval a year ago, we got a "coach" who supposedly does not do therapy but works on specific skills. DS and the coach had once weekly sessions plus twice weekly ten minute checkins by Skype. We were also referred by the ed psych to a psychologist who supposedly worked at the NIH and is an "expert" on nutritional neuroscience. Months later, we are no further but a lot poorer! 

What I've done now is find an OT because I strongly suspect SPD. I've also sought out a CBT therapist. She of course wanted me just to sign on and bring DS in for his intake etc etc. I have responded by telling exactly what I need: a plan, with specific goals and measurable outcomes. I've asked her experience in working with 2E kids. I've told her that we are not going to be delving into adoption issues (because DS isn't really interested in going there) and that we homeschool (if that's an issue for her, like it was for the coach, we won't hire her). I feel quite strongly we've been led down the garden path by previous therapists who have all come up with recommendations (mostly very expensive and unworkable and based on cursory evaluations of my son) but no practical solutions, and I've decided to treat any therapist the way I'm treated in my own professional life by my clients -- they want to know my background, my experience and what I propose to deliver to solve the agreed-upon problem -- before they hire me. 

Not sure that helps, but I'm feeling quite frustrated and let down by the system. 

7

Yes, the system is frustrating...

We used one CBT therapist for a month that was nice but clueless.  We moved on to the expensive one who suggested Cogmed. I shot that idea down instantly but stuck with him for a year.

My DS cannot take stimulant meds.  We tried Straterra with unhappy results.  Ds was under the supervision of the only child psych in our city.  They charge $200 per hour and insurance pays something like $40 per visit.  There is a desperate shortage of mental health professionals in my area.  I'm not a fan either of a ped issuing meds.  Especially one that regularly treats snot and flu and is not a subject matter expert on ADHD meds.  I'm not against meds, but these meds are serious and can induce a psychiatric episode if the ADHD is incorrectly identified.  To make matters worse in my son's case, he's been identified ADHD inattentive twice by two nps, yet the child psych disagrees with their diagnosis...think about that.  Anyhoo...

The thing with CBT and EF is that they cannot guarantee any result because what may be deemed a "success" is dependent upon numerous factors, primarily willingness on the part of the patient to buy into the plan and consistent practice with the patient's environment/family.  The CBT is not responsible when the family or patient will not stick to the routine.

The EF portions of the brain require years to develop.  My son was 16 yo when we started with CBT and we were beyond fed up. ...He presents like he is sleepy.  Once he gets started on work, he is great.  I cannot imagine how he would have done at aged 11 or 13.  

I write all of the above to advise not to expect super leaps.  We never experienced a shazaam moment.  I can look back and see huge steps in a positive direction. but it didn't feel that way as we were living it.  By my son's senior year of high school, he was self-teaching and completing his own tasks +90% of the time.  He still requires coaching and some oversight.  That 10% of dependence is what frightens me.  Thankfully, he has more maturing to go through,

[Heathermomster]

I'm kinda wishing we had tried the following when DS was younger:

https://executivefunctioningsuccess.com/

[Mama Anna]

On ‎5‎/‎24‎/‎2018 at 2:58 PM, PeterPan said:

I'm surprised you think her ADHD isn't severe. It sounds pretty significant the way you're describing it. I'm surprised she doesn't want help. Has someone said something to her that makes her scared of the meds? She would only have the information she has been fed or the experiences she's had with kids around her. Meds could be very good in her situation as they would address the specific problems you're having. Is she having anxiety? Some people with ADHD find their anxiety improves with the meds because the meds improve competency. If you're having trouble functioning, then your stress (and hence anxiety) goes down as your function improves.

Again, I think my judgments are based on comparison.  Dd 11 is much more capable of completing her work, etc., than dd8 (who has been diagnosed as gifted with HFA and ADHD).  This difference is why dd8 was evaluated first and why I categorize dd11's difficulties as "not as severe."  As for meds, as a family we try to avoid them when possible.

You can also have anxiety as a genetic component, sure. There's a gene, TPH2, that when it is defective decreases the production of 5HTP (which helps anxiety) from tryptophan. So if that gene is defective, yes she's going to be flat prone to anxiety. You can have the ADHD *and* the anxiety too. But just as a statement of what would happen to her anxiety if you put her on the ADHD meds, it might actually improve. What remains then would be the chemically caused anxiety, which is of course treatable by addressing the 5HTP deficiency.

I've read mention of 5HTP here before.  It interests me since we have several people in our family who deal with various levels of anxiety.  However, dd11 is the one of us who deals with the least anxiety, unless she's always been able to mask it since toddlerhood.  I think she would have developed more if she'd been in a more restrictive environment for education.

 

Quote

Is she having trouble understanding in background noise? Like if she's in a noisy restaurant or store, does she seem to go deaf? That would be your huge huge red flag for APD issues. Some people describe APD as ADHD of the auditory system. I'm taking my dd out to CO next month for better testing for APD to settle the question once and for all. This does not have to be one or the other. You can have some of this, some of that, a bunch of things.

Once I get her attention, she can usually follow me about as well in a noisy environment as in a quiet one.  I'll ask, though.  Thanks!

It sounds like her art is an area of strength for her. :)

I wasn't able to post this reply before when I tried, but I'm going to try again.

Thanks again for your advice.  I found the appointment to be much like y'all thought: talking through difficulties, working on EF coping strategies, etc.  I think any assessments will need to wait until we can get the evaluation scheduled.  Happily, Dd11 seemed to relate well to the counselor.  She mentioned wanting to work on some specific skills when we were discussing the appointment while on the way home.  Yay!!

Very relieved,

Mama Anna

[PeterPan]

We had a comment from a psych about not doing things to bring out the anxiety. Well we ran genetics, and turns out the dc was homozygous for the TPH2 defect, meaning the dc's 5HTP was gonna be low no matter what I did. The genetics let you target and know why you'd be taking something.

Just for your trivia, there's a study showing 5HTP+ l-tyrosine was as effective, in combo, as Vyvanse. Go figure.

That's good that she's clicking with the counselor!!