ADHD/mental health knowledgeable people

[MEmama]

Bear with me, I’m not sure exactly what I’m asking. I’m so worn out.

DS has recently started Vyvanse (30 mgs as a starting point) for ADHD. It’s been a challenge to get him to truly see his own struggles, but now that he has a diagnosis I think it feels more real to him and he’s starting to be more able to self reflect on his patterns. It’s still been a tumultuous several weeks though, with a bit of progress interspersed with several meltdowns.

This morning we were able to have a short yet productive conversation without him shutting down—a Big Win. He had struggled for *3 hours* to get out bed, literally frozen and unable. What is this? What are underlying causes for the inability to (sometimes) perform basic tasks (and yet simultaneously be able to focus on irrelevant activities, in his case usually deep research in something seemingly unimportant)? And as pressing: how can I best help? And where is the line between supporting and enabling?

We are working on getting him therapy, which he has finally agreed to (we had a failed attempt last year), but in the meantime…this is just.so.hard. Idk what I need—any advice, commiseration and insight would be so welcome.

[kbutton]

Is this the 19 y.o. in your signature? 

Task initiation can be a problem with ADHD, but this sounds like the extreme end. Does he stop verbalizing (or never start) when he won't get up? What about verbalizing with the meltdowns? 

Is this an exacerbation of existing issues, or is this kind of new?

Some of this sounds like someone under great stress that may or may not be related to ADHD (and may or may not be anxious or depressed).

10 minutes ago, MEmama said:

What are underlying causes for the inability to (sometimes) perform basic tasks (and yet simultaneously be able to focus on irrelevant activities, in his case usually deep research in something seemingly unimportant)?

This part sounds like a really stressed out or depressed person. 

The rest sounds like maybe ADHD is not the only diagnosis (ASD comes to mind)--did he have a full evaluation, or did he just talk to the pediatrician about ADHD (no shade on that in my asking--it's often all that's needed). It could also just be that things have been building and created acute stress/anxiety/depression. 

I am asking questions because it's easy to leap to something like ASD, but a lot of people do some of these things when stressed or depressed.

Also, one of my kids found that when he first started ADHD meds, he felt like they helped, but there was a point pretty quickly when it was not enough, and it was worse than being unmedicated. He had enough on board to see the problems but not enough on board to take action, and it drove him bananas. Upping his dose fixed that very well. 

30 mg is not a lot for Vyvanse.

 

[Katy]

Cognitive behavioral therapy for him. 
 

I don’t know about you. Therapy, books on boundaries, and books on ADHD might both help you have more compassion and more emotional distance. 

[maize]

Has he been evaluated for OCD? Freezing, being unable to do something like get out of bed in spite of being motivated to do so, can be a manifestation of OCD.

[Jean in Newcastle]

Contact his physician re the catatonia if it is new.  It could be a side effect of the Vyvanse. 

[MEmama]

2 minutes ago, kbutton said:

Is this the 19 y.o. in your signature? 

Task initiation can be a problem with ADHD, but this sounds like the extreme end. Does he stop verbalizing (or never start) when he won't get up? What about verbalizing with the meltdowns? 

Is this an exacerbation of existing issues, or is this kind of new?

Some of this sounds like someone under great stress that may or may not be related to ADHD (and may or may not be anxious or depressed).

This part sounds like a really stressed out or depressed person. 

The rest sounds like maybe ADHD is not the only diagnosis (ASD comes to mind)--did he have a full evaluation, or did he just talk to the pediatrician about ADHD (no shade on that in my asking--it's often all that's needed). It could also just be that things have been building and created acute stress/anxiety/depression. 

I am asking questions because it's easy to leap to something like ASD, but a lot of people do some of these things when stressed or depressed.

Also, one of my kids found that when he first started ADHD meds, he felt like they helped, but there was a point pretty quickly when it was not enough, and it was worse than being unmedicated. He had enough on board to see the problems but not enough on board to take action, and it drove him bananas. Upping his dose fixed that very well. 

30 mg is not a lot for Vyvanse.

 

Yes, he’s 19.

Yes, he can go non verbal during a meltdown, he completely and totally shuts down. Sometimes it’s short lived but other times it’s extreme and frightening. I’m completely helpless to break through in any way during those episodes. It’s hard to remember clearly, but I do think it’s gotten worse, maybe since the beginning of high school? It’s hard to say, I think because he was homeschooled before then I was able to maintain the structure and environment he needed and might have avoided some of these events as a result. 
 

When he was younger I suspected Asperger’s/ASD but no one listened to me. I’ve been fighting DH on this since DS was 2 or 3, and it’s only in the last month or two that he agrees somethings up. DS hasn’t had a full evaluation yet, he’s been referred to a neuropsych and I’m waiting to hear back. I definitely think he has anxiety, maybe more severely than I was aware.

He has mentioned more frequently since starting his meds that he is aware of the issues (like this mornings inability to get out of bed) but that he *can’t change it*, similar to your son's experience. It seems like a downward spiral. I’ll be sure to make note of that to mention to his doctor next week. 

[maize]

My 16 year old was recently diagnosed with ASD after prior evaluations just got anxiety and ADHD labels. I'm glad you've got neuropsych evaluations coming up.

We are able to accommodate so much in homeschool that sometimes things don't come to a head until later.

[MEmama]

11 minutes ago, Katy said:

Cognitive behavioral therapy for him. 
 

I don’t know about you. Therapy, books on boundaries, and books on ADHD might both help you have more compassion and more emotional distance. 

I’m positively drowning in compassion, but emotional distance is definitely needed. I've been carrying this load alone for this many years and am totally burned out.

11 minutes ago, maize said:

Has he been evaluated for OCD? Freezing, being unable to do something like get out of bed in spite of being motivated to do so, can be a manifestation of OCD.

No, he hasn’t. I’ll research, thank you

6 minutes ago, Jean in Newcastle said:

Contact his physician re the catatonia if it is new.  It could be a side effect of the Vyvanse. 

Thinking back, it’s not new. Previously it’s happened as a result of deeply stressful events like writing a paper. But I’ll be sure to mention it. 

[kbutton]

5 minutes ago, MEmama said:

Yes, he can go non verbal during a meltdown, he completely and totally shuts down. Sometimes it’s short lived but other times it’s extreme and frightening. I’m completely helpless to break through in any way during those episodes. It’s hard to remember clearly, but I do think it’s gotten worse, maybe since the beginning of high school?

That is very ASD, but there may be other causes. It's really difficult to know how to respond to. My son ended up eventually being diagnosed with expressive language disorder on top of his ASD, but it was hard to get to the bottom (2e ASD). His language issues were super specific but very, very deep. It's hard to get good language testing for that kind of issue, especially at older ages. Anyway, language therapy has virtually eliminated his going mute under duress. If you can get to the bottom of what he is experiencing in those moments, then giving him scripted language to use (or even to point to) when he's stressed might be helpful.

I am glad he's getting a more in-depth evaluation. Keep writing this stuff down for the eval. This is data. Make sure they understand the many ways you've given him supports over the years. They need to know to get the full picture.

8 minutes ago, MEmama said:

I definitely think he has anxiety, maybe more severely than I was aware.

Anxiety can be a result of the other issues not working well, or it can co-exist. My ASD kiddo has only situational anxiety, and it's rarely present. Having too much on his plate will bring on grousing and grouchy-ness, failure to follow through, etc., but he's had years of help (not counseling--speech, OT, etc.). He has a lot of years of using tools and seeing improvement, all of which keeps him pretty positive when he starts feeling stuck. Your kiddo might need a lot of specific support as this unfolds, and anxiety might be a bigger piece even if it is situational.

13 minutes ago, MEmama said:

He has mentioned more frequently since starting his meds that he is aware of the issues (like this mornings inability to get out of bed) but that he *can’t change it*, similar to your son's experience. It seems like a downward spiral. I’ll be sure to make note of that to mention to his doctor next week. 

I am glad our observations helped--I hope he can get tools paired up if it's a support he needs or get a different dosage if that is more appropriate. 

Hang in there!

[Corraleno]

Extreme anxiety can cause people to freeze. DS (ADHD and Generalized Anxiety Disorder) also has difficulty in getting out of bed in the morning, making abrupt transitions, and starting tasks that he knows will greatly ramp up his anxiety (like a writing assignment worth a large chunk of the grade, and he isn't sure where to start and hasn't been able to find the resources he needs, etc.).

Is your DS getting enough sleep? People with ADHD often need a lot more sleep than NT people, and that is even more true when taking stimulants because forced focus is really exhausting for the brain — think about trying to force your eyes to focus for long periods of time while wearing glasses that allow you to see better than without them but are also a bit "off" and not equivalent to natural, uncorrected focus. That would cause a lot of eye strain and require more rest than someone who can see perfectly without glasses. People with both ADHD and GAD especially struggle with this because anxiety often leads to insomnia or poor sleep, which creates a vicious cycle.

Edited June 29, 2022 by Corraleno

[kbutton]

8 minutes ago, MEmama said:

Thinking back, it’s not new. Previously it’s happened as a result of deeply stressful events like writing a paper. But I’ll be sure to mention it. 

My son could not write a paragraph, much less a paper until recently (he just turned 18). He has amazing language and still has language issues, but writing was one place where it really showed up.

Depending on what you read, some people believe that all ASD has some language component--can be social, can be apraxia, can be articulation, etc., but it's always there if you dig enough. My son had some social language issues, but his was more narrative language and linking language up to his problem-solving abilities. He was missing a couple of language structures, but those fell into place literally the second that the problem-solving fell into place. Ironically, my son is an excellent problem-solver in many areas of life; it really has to do with hooking it up to the language itself and sometimes with social stuff. The test that looks at problem-solving in language is the TOPS-2 for adolescents. It might not be the "right" age-range for your DS, but I would push to have something like it done (it's open-ended, which is crucial). He's likely to still have some areas that it picks up on even if he's aged out of the test (and I am not sure what the range is for this one). 

When we were able to verbalize what my son was feeling, the relief on his face--he would almost weep with relief, and as soon as he knew we understood, it would get so much better. It was just all stuck, stuck, stuck in there. He would make a series of statements that were loosely related, and we had to figure out what was missing. That was the best that he could do--he literally could not ask a question or state succinctly why he was sharing those facts together. I was so used to it that I didn't realize for a long time that it wasn't normal--he'd been doing this since he was 2. You get used to your/his normal.

13 minutes ago, MEmama said:

I’m positively drowning in compassion, but emotional distance is definitely needed. I've been carrying this load alone for this many years and am totally burned out.

You've carried this a long time! We got a diagnosis around age 9. I was fried by then. It got better, and then the language cropped up, and I hit burnout again. You've not had that relief at all. Hugs. 

[MEmama]

43 minutes ago, Corraleno said:

Extreme anxiety can cause people to freeze. DS (ADHD and Generalized Anxiety Disorder) also has difficulty in getting out of bed in the morning, making abrupt transitions, and starting tasks that he knows will greatly ramp up his anxiety (like a writing assignment worth a large chunk of the grade, and he isn't sure where to start and hasn't been able to find the resources he needs, etc.).

Is your DS getting enough sleep? People with ADHD often need a lot more sleep than NT people, and that is even more true when taking stimulants because forced focus is really exhausting for the brain — think about trying to force your eyes to focus for long periods of time while wearing glasses that allow you to see better than without them but are also a bit "off" and not equivalent to natural, uncorrected focus. That would cause a lot of eye strain and require more rest than someone who can see perfectly without glasses. People with both ADHD and GAD especially struggle with this because anxiety often leads to insomnia or poor sleep, which creates a vicious cycle.

His sleep habits are worse than they used to be, which isn’t surprising as a college student. I’m an enormous proponent of sleep and it’s an area where I’m hoping to get him back on track this summer. Basically all his self care habits have devolved though, so I don’t want to pile on. I’ll mention your point about it being extra necessary on the meds; there’s a chance he will respond to that. 
 

As it is, he mentions feeling either entirely “on” or “off”, that there is no in between. He’s coping well at his summer job, but once he’s completed his final task for the day his body and mind shut down; then he’ll sometimes fall asleep at 5 or 6 and either sleep all night or for a few hours before waking again until 2 am. 

[MEmama]

49 minutes ago, kbutton said:

My son could not write a paragraph, much less a paper until recently (he just turned 18). He has amazing language and still has language issues, but writing was one place where it really showed up.

Depending on what you read, some people believe that all ASD has some language component--can be social, can be apraxia, can be articulation, etc., but it's always there if you dig enough. My son had some social language issues, but his was more narrative language and linking language up to his problem-solving abilities. He was missing a couple of language structures, but those fell into place literally the second that the problem-solving fell into place. Ironically, my son is an excellent problem-solver in many areas of life; it really has to do with hooking it up to the language itself and sometimes with social stuff. The test that looks at problem-solving in language is the TOPS-2 for adolescents. It might not be the "right" age-range for your DS, but I would push to have something like it done (it's open-ended, which is crucial). He's likely to still have some areas that it picks up on even if he's aged out of the test (and I am not sure what the range is for this one). 

When we were able to verbalize what my son was feeling, the relief on his face--he would almost weep with relief, and as soon as he knew we understood, it would get so much better. It was just all stuck, stuck, stuck in there. He would make a series of statements that were loosely related, and we had to figure out what was missing. That was the best that he could do--he literally could not ask a question or state succinctly why he was sharing those facts together. I was so used to it that I didn't realize for a long time that it wasn't normal--he'd been doing this since he was 2. You get used to your/his normal.

You've carried this a long time! We got a diagnosis around age 9. I was fried by then. It got better, and then the language cropped up, and I hit burnout again. You've not had that relief at all. Hugs. 

This is DS, regarding expressing emotions and feelings. And writing out all the knowledge he carries in head in any cohesive way. Stuck, stuck stuck…exactly.

Thank you so much for your understanding. Your words made me cry (in a good way!).

[kbutton]

1 hour ago, MEmama said:

His sleep habits are worse than they used to be, which isn’t surprising as a college student. I’m an enormous proponent of sleep and it’s an area where I’m hoping to get him back on track this summer. Basically all his self care habits have devolved though, so I don’t want to pile on. I’ll mention your point about it being extra necessary on the meds; there’s a chance he will respond to that. 
 

As it is, he mentions feeling either entirely “on” or “off”, that there is no in between. He’s coping well at his summer job, but once he’s completed his final task for the day his body and mind shut down; then he’ll sometimes fall asleep at 5 or 6 and either sleep all night or for a few hours before waking again until 2 am. 

Does he like self-care tasks if he feels like he has permission to do them? You don't really need to answer me on that, but if you can make him feel "free" to do those things (such as by couching it as bolded), and it would make him feel better, I would really try milk that because it's more preventive than a fix after the fact will be. It's really disruptive to go to school and come home for the summer even for neurotypical kids. Everything is so temporary that it feels like you can just adjust, but sometimes you really can't adjust and need those routines/structures. 

My son appreciates those reminders, but again, he has had so many therapies over time, and he's responded optimally. It's not always that way for everyone. I know you can't always be direct. My son is surprisingly candid and okay with some reminders for someone with his age and his mix of diagnoses. 

I didn't check to see if you are on there, but there is a social group for parents of young adults on the spectrum. Even if he doesn't get that diagnosis, it sounds like he could use the same kinds of supports right now. 

[Kanin]

I have no helpful thoughts, but I'm sending good vibes your way! This all sounds so difficult and exhausting. It must be even more difficult to figure this out with someone who has difficulty expressing their thoughts. I imagine he must feel very stuck. 

[ktgrok]

3 hours ago, MEmama said:

Bear with me, I’m not sure exactly what I’m asking. I’m so worn out.

DS has recently started Vyvanse (30 mgs as a starting point) for ADHD. It’s been a challenge to get him to truly see his own struggles, but now that he has a diagnosis I think it feels more real to him and he’s starting to be more able to self reflect on his patterns. It’s still been a tumultuous several weeks though, with a bit of progress interspersed with several meltdowns.

This morning we were able to have a short yet productive conversation without him shutting down—a Big Win. He had struggled for *3 hours* to get out bed, literally frozen and unable. What is this? What are underlying causes for the inability to (sometimes) perform basic tasks (and yet simultaneously be able to focus on irrelevant activities, in his case usually deep research in something seemingly unimportant)? And as pressing: how can I best help? And where is the line between supporting and enabling?

We are working on getting him therapy, which he has finally agreed to (we had a failed attempt last year), but in the meantime…this is just.so.hard. Idk what I need—any advice, commiseration and insight would be so welcome.

If meaning to get out of bed, but distracted and not realizing how much time has passed - that's ADHD. Often, finding a way AROUND the task, rather than through it, can help. So, for instance, if he is supposed to get up and make breakfast, that may sound like too much, so sometimes instead of continuting to push it works to side step, and instead just say, get up and sit in a chair on the other side of the room. It's easier to convince yourself t do that, then once you are upright, then you have some momentum to go to the kitchen. It's all about momentum. 

But, if it is truly just not able to get out of bed, that sounds more like anxiety. My ex would get "stuck" like that, either in the bed, or in the shower, etc. Different thing entirely. That said, going sideways, or finding a baby step, can still help. So instead of pushing my ex to get out of the shower, just pushing him to stand up, instead of sit, or to sit, but with the water off. ANYTHING that changes the dynamic a bit can be that leverage needed to take the next step. OR - distracting the brain. So having them read or watch a video on their phone, then while still doing that, sit up in bed, then a minute later swing legs over the edge to the ground, etc. Or getting them talking about something. 

In this case, maybe bringing the person food/coffee or meds/food in bed would be enough for them to build up the momentum to get up. 

But if it is ADHD, think of mental inertia - hard to start a new task, hard to stop once going. And no ability to track time. 

[Acadie]

3 hours ago, MEmama said:

This morning we were able to have a short yet productive conversation without him shutting down—a Big Win. He had struggled for *3 hours* to get out bed, literally frozen and unable. What is this? What are underlying causes for the inability to (sometimes) perform basic tasks (and yet simultaneously be able to focus on irrelevant activities, in his case usually deep research in something seemingly unimportant)? And as pressing: how can I best help? And where is the line between supporting and enabling?

That's huge that you were able to have a conversation without his completely shutting down.

Other posters have better insight into the whole picture, but difficulty with task initiation and hyper focus on research both can definitely be part of ADHD. Diving into a rabbit hole of research can be a way to manage or reduce anxiety and increase dopamine. As you're exploring the big picture and any med adjustments I wonder if an ADHD coach could be helpful. Or perhaps after you get a better sense of the big picture. 

For us ADHD meds and developing personal tools and insights to manage symptoms and find what works are both necessary in equal parts. It would need to be someone he likes well enough, and he might need to try 2 or 3 people to find a good fit. A coach who works online can be an excellent, portable support for college. It's not cheap and not a quick fix, but can be life-changing. 

Does he like music? Would a playlist to start the day or for hygiene/getting ready be something he might be open to?

[kbutton]

Oh, just mentioning reactive hypoglycemia in case that's a thing. That can really shut one of my kids down and makes both of my kids completely and totally irrational. We used to set a timer for snacks just to avoid it at all costs. 

[KSera]

2 hours ago, kbutton said:

Oh, just mentioning reactive hypoglycemia in case that's a thing. That can really shut one of my kids down and makes both of my kids completely and totally irrational. We used to set a timer for snacks just to avoid it at all costs. 

Ugh, i’m really glad you reminded me of this, because I think that’s contributing to big issues around here right now. I mean, I knew it was an issue she wasn’t eating enough, but the degree of irrationality surrounding that is helpful for me to see that others experience it to that degree. Mine is of adult age but keeps blaming me for the fact she hasn’t eaten all day 🤦‍♀️. But then still won’t do so (but continues to complain about it) 🤦‍♀️🤦‍♀️.

[prairiewindmomma]

Everyone else has chimed in with what I would—spectrumy behaviors, anxiety, etc. My kids call the block the “wall of awful”—it’s a real thing that some people deal with. 
 

Keep a running log of issues and what helps and what doesn’t. This is all good information. 
 

Things can totally get better—they have here—but I am glad he is doing evals and is willing to do therapy. 

[MEmama]

14 hours ago, ktgrok said:

If meaning to get out of bed, but distracted and not realizing how much time has passed - that's ADHD. Often, finding a way AROUND the task, rather than through it, can help. So, for instance, if he is supposed to get up and make breakfast, that may sound like too much, so sometimes instead of continuting to push it works to side step, and instead just say, get up and sit in a chair on the other side of the room. It's easier to convince yourself t do that, then once you are upright, then you have some momentum to go to the kitchen. It's all about momentum. 

But, if it is truly just not able to get out of bed, that sounds more like anxiety. My ex would get "stuck" like that, either in the bed, or in the shower, etc. Different thing entirely. That said, going sideways, or finding a baby step, can still help. So instead of pushing my ex to get out of the shower, just pushing him to stand up, instead of sit, or to sit, but with the water off. ANYTHING that changes the dynamic a bit can be that leverage needed to take the next step. OR - distracting the brain. So having them read or watch a video on their phone, then while still doing that, sit up in bed, then a minute later swing legs over the edge to the ground, etc. Or getting them talking about something. 

In this case, maybe bringing the person food/coffee or meds/food in bed would be enough for them to build up the momentum to get up. 

But if it is ADHD, think of mental inertia - hard to start a new task, hard to stop once going. And no ability to track time. 

He experiences both. The ADHD stuff is pretty clear to me, but the other things—a poster down thread refers to it as the “wall of awful”— leave me more concerned (don’t get me wrong, I’m concerned about all of it, but when a young adult simply cannot move off the couch or bed and can’t verbalise during the episode, it’s scary). Last night before bed he was worried it was going to happen again; I can’t imagine the anxiety he shuts away. 😞 

Thank you for the tips. Gives me a lot to think about in terms of how to scaffold in a truly helpful manner while he’s home.

[MEmama]

14 hours ago, Acadie said:

That's huge that you were able to have a conversation without his completely shutting down.

Other posters have better insight into the whole picture, but difficulty with task initiation and hyper focus on research both can definitely be part of ADHD. Diving into a rabbit hole of research can be a way to manage or reduce anxiety and increase dopamine. As you're exploring the big picture and any med adjustments I wonder if an ADHD coach could be helpful. Or perhaps after you get a better sense of the big picture. 

For us ADHD meds and developing personal tools and insights to manage symptoms and find what works are both necessary in equal parts. It would need to be someone he likes well enough, and he might need to try 2 or 3 people to find a good fit. A coach who works online can be an excellent, portable support for college. It's not cheap and not a quick fix, but can be life-changing. 

Does he like music? Would a playlist to start the day or for hygiene/getting ready be something he might be open to?

The bolded is his life. Hopefully he’ll get started soon with the neuropsych here; if she’s a good fit I’ll ask if she can continue online, though a time difference might make it tricky. He will need to see a psychiatrist in Ireland when he’s back in school to get his meds; I don’t yet know if it’s just a formality or if they offer regular therapy as well.

[MEmama]

13 hours ago, kbutton said:

Oh, just mentioning reactive hypoglycemia in case that's a thing. That can really shut one of my kids down and makes both of my kids completely and totally irrational. We used to set a timer for snacks just to avoid it at all costs. 

Interesting—not eating regularly (which he’s let slide) does impact his temperament; I’m going to ask him if he can notice a pattern. 

[KSera]

3 hours ago, MEmama said:

He experiences both. The ADHD stuff is pretty clear to me, but the other things—a poster down thread refers to it as the “wall of awful”— leave me more concerned (don’t get me wrong, I’m concerned about all of it, but when a young adult simply cannot move off the couch or bed and can’t verbalise during the episode, it’s scary). Last night before bed he was worried it was going to happen again; I can’t imagine the anxiety he shuts away. 😞 

Have you looked up autistic shutdown? It sounds similar to me. I hope he gets good info from the neuropsych soon. I can’t remember if you already have a regular psychiatrist appointment, but since that can take awhile to get into, that seems a good idea to make one in case he ends up needing anti-anxiety medication. 

[MercyA]

Just popping in quickly to say you might want to google autistic inertia. 

[Lawyer&Mom]

Doe he have something to get up for?  Unstructured time can be oppressive for Autistic people.  The weight of an unstructured summer day may be keeping him in bed. 

[prairiewindmomma]

From a neuro point of view, if the limbic system has taken over, then talking, which is a higher cognitive thing, isn’t likely to happen. If he is having a shutdown (and do please Google autistic shutdown), they are super common, then talking and working on cognitive things isn’t going to happen because that isn’t the part of the brain driving the bus. 
 

If you stop talking and give him time and space, are things better within 5 minutes? Does he start to pull out of it and be able to answer yes/no questions about what is going on or how you can help?

In time, the shutdowns can become shorter in length and much further apart in time. 
 

Based on what you are asking and describing, how informed is ds about adhd and shutdowns and such? Would watching videos to explain the behaviors and what is going on help? My kids appreciated being able to have labels and explanations about what was happening.

The YouTube Channel “How to ADHD” may be helpful. She also talks about the “wall of awful”.
 

[Pawz4me]

On 6/29/2022 at 2:35 PM, MEmama said:

His sleep habits are worse than they used to be, which isn’t surprising as a college student. I’m an enormous proponent of sleep and it’s an area where I’m hoping to get him back on track this summer. Basically all his self care habits have devolved though, so I don’t want to pile on. I’ll mention your point about it being extra necessary on the meds; there’s a chance he will respond to that. 
 

As it is, he mentions feeling either entirely “on” or “off”, that there is no in between. He’s coping well at his summer job, but once he’s completed his final task for the day his body and mind shut down; then he’ll sometimes fall asleep at 5 or 6 and either sleep all night or for a few hours before waking again until 2 am. 

DS has ASD and GAD. He works full time in a low stress but fairly physical job. The bolded part is his normal--he's totally wiped out from working. Other than eating and showering he sleeps pretty much all the time he's not working, including sleeping away the vast majority of his days off. Having to function in a world that marches to a different drummer wears him out. Do keep in mind that it's common to have an alphabet soup of diagnoses, so in all likelihood he does having something else going on along with the ADHD. Could be GAD or ASD or both, or something else. Many hugs to you. It's a job to get things sorted out, but for all of us it was a relief when we finally did. DS was also older (16 or 17, I forget) when we finally did get things sorted out, although I'd known all along that he was almost certainly on the spectrum. Sometimes it's almost impossible to get the professionals to listen to you until our kids hit a wall, and for some of them that takes awhile.

[MEmama]

14 hours ago, Lawyer&Mom said:

Doe he have something to get up for?  Unstructured time can be oppressive for Autistic people.  The weight of an unstructured summer day may be keeping him in bed. 

He is working full time this summer. He enjoys his job, it’s varied and he has a lot of responsibility. 

Lack of structure has always been difficult for him, even when he was very young. He was never the “let them get bored and they’ll get creative” kid, he was the kid who needed constant structured activities to stay engaged.

7 hours ago, prairiewindmomma said:

From a neuro point of view, if the limbic system has taken over, then talking, which is a higher cognitive thing, isn’t likely to happen. If he is having a shutdown (and do please Google autistic shutdown), they are super common, then talking and working on cognitive things isn’t going to happen because that isn’t the part of the brain driving the bus. 
 

If you stop talking and give him time and space, are things better within 5 minutes? Does he start to pull out of it and be able to answer yes/no questions about what is going on or how you can help?

In time, the shutdowns can become shorter in length and much further apart in time. 
 

Based on what you are asking and describing, how informed is ds about adhd and shutdowns and such? Would watching videos to explain the behaviors and what is going on help? My kids appreciated being able to have labels and explanations about what was happening.

The YouTube Channel “How to ADHD” may be helpful. She also talks about the “wall of awful”.
 

Not 5 minutes, no. He is starting to work on trying to notice triggers, I suspect that’s going to be a complicated process but it’s a start. Overwhelm seems to be the common thread to me, it’s as though he’s often walking right on the very edge of collapse.

I'll suggest the YouTube channel and watch it myself—thanks for the rec. Now that he has some sort of diagnosis (at least for the ADHD part, anxiety is another we'll bring up at next his doctor appointment) he is more more receptive to paying attention and working on a path forward. Scientific explanations and data are always the key for him. 

[MEmama]

23 minutes ago, Pawz4me said:

DS has ASD and GAD. He works full time in a low stress but fairly physical job. The bolded part is his normal--he's totally wiped out from working. Other than eating and showering he sleeps pretty much all the time he's not working, including sleeping away the vast majority of his days off. Having to function in a world that marches to a different drummer wears him out. Do keep in mind that it's common to have an alphabet soup of diagnoses, so in all likelihood he does having something else going on along with the ADHD. Could be GAD or ASD or both, or something else. Many hugs to you. It's a job to get things sorted out, but for all of us it was a relief when we finally did. DS was also older (16 or 17, I forget) when we finally did get things sorted out, although I'd known all along that he was almost certainly on the spectrum. Sometimes it's almost impossible to get the professionals to listen to you until our kids hit a wall, and for some of them that takes awhile.

Yes, husbands too. 😞 

As much guilt as I carry for not getting this sorted when he was younger, it may be that it’s only now that DS is able to see more clearly what I have always seen. Quite suddenly, since getting a diagnosis, he’s been able to open up and verbalize (a bit—he’s really trying) about how he works; it’s almost as though he’s finally been given permission. We had an incredibly helpful, insightful talk last night and I’m feeling hopeful this morning that we're on the right path, and most importantly that he now understands the importance of it. 

[Lawyer&Mom]

I’m so glad he has the summer job.  I did a lot of summer school in college, I needed *something* and didn’t really have the executive functioning to find a temporary job.

Another question:  where is he on his path to launching?  I know that figuring out my place in the post-university world was incredibly stressful for undiagnosed me.    It requires executive functioning and self-awareness that I just didn’t have.  Lots of overwhelm.  My mom ended up needing to scaffold a lot for me, but without pre-planning it ended up being crisis management.  I know I will need to be more hands on and ahead of the ball with my kids.  That’s the gift of diagnosis!

[kbutton]

5 hours ago, MEmama said:

Overwhelm seems to be the common thread to me, it’s as though he’s often walking right on the very edge of collapse.

Mine was like this when he tried school K-2. 

Even enjoyable things can be this way--my son gets crankier when he's working more hours, and if he adds in something like socializing, then he's even more cranky.

It's pretty typical of kids on the spectrum to just have a totally different set point for stress. Some people-y introverts or extraverted ASD folks can afford to run a bit overstimulated, but they also can show signs of stress (crabbiness, etc.). 

[MEmama]

14 hours ago, prairiewindmomma said:

The YouTube Channel “How to ADHD” may be helpful. She also talks about the “wall of awful”.

This.is.amazing. Thank you thank you thank you for mentioning this resource. I had DH watch the “signs everyone else missed” video and for the **first time** he actually understands. After all these years of trying to convince him DS isn’t being lazy or belligerent, he finally gets it. That alone is a miracle.

I've been watching videos all morning and am alternating between emotions. They are going to be an incredible resource for DS, but also for myself and DH as we finally navigate this journey. I can’t thank you enough.

[MEmama]

1 hour ago, Lawyer&Mom said:

I’m so glad he has the summer job.  I did a lot of summer school in college, I needed *something* and didn’t really have the executive functioning to find a temporary job.

Another question:  where is he on his path to launching?  I know that figuring out my place in the post-university world was incredibly stressful for undiagnosed me.    It requires executive functioning and self-awareness that I just didn’t have.  Lots of overwhelm.  My mom ended up needing to scaffold a lot for me, but without pre-planning it ended up being crisis management.  I know I will need to be more hands on and ahead of the ball with my kids.  That’s the gift of diagnosis!

He was lucky lucky this job landed in his lap; it was a grim situation before he got the offer out of the blue.

Hes just finished his first year at uni. His plan has been to stay in Ireland after graduation; he’s a CS major so work shouldn’t be difficult to find. Of course he always come home too. We were pretty hands off this year, and while it started strong it ended in disaster. We are struggling atm to see how we can send him back, unless by some miracle he is in a stronger/more stable place this fall. It’s a short timeline, which works against us. 

[MEmama]

1 hour ago, kbutton said:

Mine was like this when he tried school K-2. 

Even enjoyable things can be this way--my son gets crankier when he's working more hours, and if he adds in something like socializing, then he's even more cranky.

It's pretty typical of kids on the spectrum to just have a totally different set point for stress. Some people-y introverts or extraverted ASD folks can afford to run a bit overstimulated, but they also can show signs of stress (crabbiness, etc.). 

Yes, there is definitely a threshold but I don’t think even he knows where it is yet. He can be surprisingly social for an introvert and makes friends easily, and he seems to be thriving in that department at uni. Ofc, we only know what we are shown/told; for sure reaching out to others is hard for him, which has prevented him from seeking support at school and from letting us in. I’m hoping that as we learn more he will have the language he needs to help verbalize his thoughts/emotions/feelings. He’s made strides this month, I think. 

[Acadie]

On 6/30/2022 at 7:11 AM, MEmama said:

The bolded is his life. Hopefully he’ll get started soon with the neuropsych here; if she’s a good fit I’ll ask if she can continue online, though a time difference might make it tricky. He will need to see a psychiatrist in Ireland when he’s back in school to get his meds; I don’t yet know if it’s just a formality or if they offer regular therapy as well.

Neuropsych eval and psychiatrist in Ireland are essential. An ADHD coach, if it seems helpful and you can find the right person, would be in addition to those practitioners. A good coach can help with identifying challenge areas in everyday life and academic work, and developing personal strategies in meeting those challenges. It would be regular virtual meetings, covering what he needs to do and how things are going. With his university so far away this could be an excellent support for executive function and just to have someone checking in with him (someone who is not a parent!).  There's an element of accountability over time. 

I have friends for whom this has been an absolute lifesaver in launching a young adult with ADHD. Like, they could not picture their children being able to manage independently but after a year or two of coaching things look very different. Not that the challenges are no longer there, but that the young person has the awareness and tools to manage and enjoy life.

The tricky part is it's probably private pay and isn't cheap, and also you need to find someone he works well with. A good coach will be very adept at identifying challenge areas and helping him find strategies that work for him. They would also be very cognizant of ADHD features like the Wall of Awful and can help with developing language and self-awareness, in addition to coming up with concrete strategies. 

There may be other things you want to address after the neuropsych eval so I don't want to give the impression this magically helps every person. But I really have seen it be transformative, and a huge relief to parents both to have someone else working with the young adult, and to see real, life-changing gains. 

[Kanin]

2 hours ago, MEmama said:

Hes just finished his first year at uni. His plan has been to stay in Ireland after graduation; he’s a CS major so work shouldn’t be difficult to find. Of course he always come home too. We were pretty hands off this year, and while it started strong it ended in disaster. We are struggling atm to see how we can send him back, unless by some miracle he is in a stronger/more stable place this fall. It’s a short timeline, which works against us. 

Oh, dear. I'm sorry. I can remember your excited posts about him starting school in Ireland.

[Lawyer&Mom]

2 hours ago, MEmama said:

He was lucky lucky this job landed in his lap; it was a grim situation before he got the offer out of the blue.

Hes just finished his first year at uni. His plan has been to stay in Ireland after graduation; he’s a CS major so work shouldn’t be difficult to find. Of course he always come home too. We were pretty hands off this year, and while it started strong it ended in disaster. We are struggling atm to see how we can send him back, unless by some miracle he is in a stronger/more stable place this fall. It’s a short timeline, which works against us. 

I crashed and burned my first and last semesters in undergrad.  A coach would have been a huge game changer for me.    It never was the academics, it was *always* the logistics.  I never studied because I never had the right books when I had the free time…. (I needed a locker, and I didn’t have one.)  My last semester I didn’t eat because I didn’t have a meal plan and I didn’t know what to eat.  (That sounds crazy when I type it, but I had a lot of legit problems that semester that turned my Executive Functioning down to zero.)  

A coach would have been amazing.  I needed someone (not my mom) to help me figure out exactly when (and where and  how) I would study, and when I would actually do laundry.  I was great at following schedules, I just couldn’t make them….

And no one, including myself, had any idea I would need any of these supports because in high school I seemed like a totally together kid.  (Okay, a bit quirky but so focused and motivated!)  Falling apart in college is *so* common for a certain kind of not-neurotypical kid.  But it’s emotionally devastating if it takes you off-guard, if you have always been (mostly) successful and you don’t know why you are struggling.  I really feel for your son.  He’s not the first and he won’t be the last, but I bet he feels really alone right now. 

[GoodGrief3]

On 6/29/2022 at 8:43 AM, MEmama said:

He had struggled for *3 hours* to get out bed, literally frozen and unable. What is this?

If he is physically unable to move, one possibility is functional neurological disorder (previously called conversion disorder.) It can present in a number of ways including paralysis, tremors, seizures, even blindness. My daughter gets tremors that were quite disabling at one time, and my mother would get seizures. I have more experience/advice if you decide this might be an issue.

Hugs to you. My experience with my kids was that the college years were pretty intense as far as mental health issues.

[MEmama]

16 hours ago, Acadie said:

Neuropsych eval and psychiatrist in Ireland are essential. An ADHD coach, if it seems helpful and you can find the right person, would be in addition to those practitioners. A good coach can help with identifying challenge areas in everyday life and academic work, and developing personal strategies in meeting those challenges. It would be regular virtual meetings, covering what he needs to do and how things are going. With his university so far away this could be an excellent support for executive function and just to have someone checking in with him (someone who is not a parent!).  There's an element of accountability over time. 

I have friends for whom this has been an absolute lifesaver in launching a young adult with ADHD. Like, they could not picture their children being able to manage independently but after a year or two of coaching things look very different. Not that the challenges are no longer there, but that the young person has the awareness and tools to manage and enjoy life.

The tricky part is it's probably private pay and isn't cheap, and also you need to find someone he works well with. A good coach will be very adept at identifying challenge areas and helping him find strategies that work for him. They would also be very cognizant of ADHD features like the Wall of Awful and can help with developing language and self-awareness, in addition to coming up with concrete strategies. 

There may be other things you want to address after the neuropsych eval so I don't want to give the impression this magically helps every person. But I really have seen it be transformative, and a huge relief to parents both to have someone else working with the young adult, and to see real, life-changing gains. 

Thank you for all of this. I’d never heard of an ADHD coach before this thread, but one of the How to ADHD videos explained well the difference between a coach and a therapist. I will definitely start looking for one for him, if they are available there, in addition to a therapist. I don’t yet have a handle on how their system works. We still have to line up help here first; I’m getting stressed about our short window of time.

[MEmama]

14 hours ago, Kanin said:

Oh, dear. I'm sorry. I can remember your excited posts about him starting school in Ireland.

Thank you! He really loves his university and the city and all the opportunities there; his first semester went well but then his mental health just crashed. If we can get him back on track he’s going to thrive there, I don’t have any doubts about that.

There are additional challenges with having him so far away but honestly the same thing was as likely to happen if he was in school in Boston. His university offers tons of supports; it’s a matter now of understanding them and learning to reach out.  I’m hopeful we are finally on the right track.

[MEmama]

14 hours ago, Lawyer&Mom said:

I crashed and burned my first and last semesters in undergrad.  A coach would have been a huge game changer for me.    It never was the academics, it was *always* the logistics.  I never studied because I never had the right books when I had the free time…. (I needed a locker, and I didn’t have one.)  My last semester I didn’t eat because I didn’t have a meal plan and I didn’t know what to eat.  (That sounds crazy when I type it, but I had a lot of legit problems that semester that turned my Executive Functioning down to zero.)  

A coach would have been amazing.  I needed someone (not my mom) to help me figure out exactly when (and where and  how) I would study, and when I would actually do laundry.  I was great at following schedules, I just couldn’t make them….

And no one, including myself, had any idea I would need any of these supports because in high school I seemed like a totally together kid.  (Okay, a bit quirky but so focused and motivated!)  Falling apart in college is *so* common for a certain kind of not-neurotypical kid.  But it’s emotionally devastating if it takes you off-guard, if you have always been (mostly) successful and you don’t know why you are struggling.  I really feel for your son.  He’s not the first and he won’t be the last, but I bet he feels really alone right now. 

I hope you don’t mind that I read your post to DH. Hearing from other people holds more weight but at least he’s finally starting to understand (accept) the words I’ve been using for the past 15+ years. It’s going to be much easier now that he’s getting on board.

 

 

Edited July 2, 2022 by MEmama

[livetoread]

Lots of ADHD coaches are online (my kiddo has one). They aren't licensed, so they have no practice area limitations. Finding one here and then just continuing to use them online in Ireland should only be a time difference issue.

[Lawyer&Mom]

5 hours ago, MEmama said:

I hope you don’t mind that I read your post to DH. Hearing from other people holds more weight but at least he’s finally starting to understand (accept) the words I’ve been using for the past 15+ years. It’s going to be much easier now that he’s getting on board.

 

 

I *love* that you read my post to your husband.  Helping anyone understand the challenges of college for the not-Neurotypicals helps me feel like that horrible experience wasn’t for naught!

You mention difficulties reaching out for help.  I flailed at calculus at university and we had a dedicated math tutoring center, and I literally couldn’t make myself walk through the door.  Asking for help was just beyond me.  In retrospect I think I had pragmatic language deficits, and in a time of crisis what would normally have been difficult for me (asking for help) was simply impossible.  (But I was seventeen!  At twenty-three I would have been best friends with everyone at the tutoring center, because they would have been a semi-captive audience for socialization…)  Anyway, if someone had just walked with me the first time, and helped me break that barrier, it would have made all the difference.  That’s what I imagine a coach could do. 
 

(Edited to add:  I do think I coach could help remotely.  Like even if they couldn’t physically walk with me into the tutoring center, they could help me make an appointment, or help me figure out that I could ask a friend to go with me etc.  Just help me not freeze when I got stuck.) 

Edited July 2, 2022 by Lawyer&Mom

[livetoread]

3 hours ago, Lawyer&Mom said:

(Edited to add:  I do think I coach could help remotely.  Like even if they couldn’t physically walk with me into the tutoring center, they could help me make an appointment, or help me figure out that I could ask a friend to go with me etc.  Just help me not freeze when I got stuck.) 

My kiddo's coach does stuff like this. She'll ask if there is something my kid hasn't been able to do and then she'll have them do it right then talking them through it. I admit I grumble a bit to myself that I could easily do that for free, but paying for the help is still way cheaper than having to retake a class or something and independence from Mom is a good thing!

[Acadie]

38 minutes ago, livetoread said:

My kiddo's coach does stuff like this. She'll ask if there is something my kid hasn't been able to do and then she'll have them do it right then talking them through it. I admit I grumble a bit to myself that I could easily do that for free, but paying for the help is still way cheaper than having to retake a class or something and independence from Mom is a good thing!

I’m often amazed at what other adults can get my teens to do that they would never do if I suggested or encouraged it. 

[KSera]

52 minutes ago, livetoread said:

My kiddo's coach does stuff like this. She'll ask if there is something my kid hasn't been able to do and then she'll have them do it right then talking them through it. I admit I grumble a bit to myself that I could easily do that for free, but paying for the help is still way cheaper than having to retake a class or something and independence from Mom is a good thing!

This is helpful to read. We started getting set up with one, but then they never got back to us again, so I thought we could take on more of that ourselves without paying, but it's just not working very well (and the coaching place dropped the ball, so I let it go, which is a little ironic for the coaches to be the one who dropped the ball!).

[MEmama]

I found a coach who also does testing (as a sort of last resort, he prefers to evaluate through actual conversation) who seems promising. I’ll contact him next week after the holiday—hopefully he takes our insurance 🤞. He seems on paper like someone DS might respond well to. The neuropsych hasn’t returned my calls yet.