Adaptions for Severe Mental Illness, Dysgraphia, and more

[Cosmic Ripple]

What adaptations do you make for a child with severe mental illness?

My 13-year-old son deals with severe mood swings with psychosis. Additionally, he is autistic, has severe Tourette's (without coprolalia), significant difficulty with *handwriting, and has a high IQ. His breaks from reality typically include hallucinations and paranoia and he will be unable to function for hours up to a week and will need constant 24/7 awake supervision during these times. Occasionally, they can be of the “lighter” variety and a mental health day or afternoon in nature resolves the episode. At other times, we must send our other child to stay with family for a few days for her safety, spend hours on the phone and in dr offices, and have hourly debates about hospitalization.

He has previously had occupational therapy for sensory integration, takes medications daily and as needed for mood/anxiety/psychosis, is in cognitive behavioral therapy, has a travel bag of sensory tools, and has access to an AAC (proloquo2go) as needed. 

I’m curious what choices others with similar challenges make. How does this affect your goal planning, curriculum choices, etc? I find it hard to balance making certain we cover what I think we should in certain amounts of time with his more sporadic bursts of manic energy and surprise time off needed.

He’s been homeschooled for 3 years and attended a private school before that time. 

*I highly suspect dysgraphia but have been unable to find anyone to test him for it. He continually complains that writing hurts his hand. He naturally tries to write with a LOT of pressure to slow himself down and we’ve been working on practicing writing lightly and slowly to achieve neater handwriting, but it’s still a chore for him to write something short hat is barely legible.

 

[PeterPan]

2 hours ago, Cosmic Ripple said:

akes medications daily and as needed for mood/anxiety/psychosis

Sorry to quote you on this, but it seems like this is the thing to go back to. If he's still having hallucinations, the schizophrenia or schizoaffective (since you also said manic) is not under control. Has it been worse since the shut down? Are you getting teletherapy services to deal with anxiety he's feeling during this time? If it has increased, he needs more meds.

2 hours ago, Cosmic Ripple said:

it’s still a chore for him to write something short hat is barely legible.

Yes, you're describing my ds' dysgraphia. What do you want to do about it? What are your goals? Tech is totally appropriate and should be used here.

2 hours ago, Cosmic Ripple said:

Additionally, he is autistic, has severe Tourette's

Have you run genetics? You have such a complicated package, you might learn something by running genetics. A children's hosptial will look for syndromes. The SPARK study would give you feedback and possibly turn up something. And you can run it yourself with 23andme and crunch the raw data. Might turn up something on the mental health too.

It's possible he has significant methylation issues. There's a connection between methyl levels and schizophrenia and bipolar symptoms. It's possible that they're getting his meds right and then they're being undermined with unrealized patterns based on things he's eating or taking that are say methyl donors. 

My only tip is pursue joy. Stop trying to "school" and think about what he really needs longterm. Where is this going? What do you want him to be able to do when he's 18? Start doing it now. You want him to be able to travel? Then start traveling. You want him to have leisure habits like playing cards or games? Then start doing that. You want him to have habits of self care? Start doing those now. You want him to be employable? https://www.ocali.org/project/tg_aata/page/elsa_documents then use this form (the ELSA) to create a game plan for weaving skills into your day. But overall, dump the system and just start pursuing joy together. This is a child who's going to be pretty challenged. Think about where it's going and what it will mean for him to have a joyful, productive, connected, contributing life and do it.

Edited April 26, 2020 by PeterPan

[PeterPan]

So I know this lady (whom I don't get to see very often, she lives in another city) and she has done the most amazing job with her highly affected, completely non-verbal ASD3 ds. He's probably almost 20 now, I lose track. And you know anybody can criticize anybody's choices on how they do things, but the thing she has done BEST is helping him feel loved, connected, surrounded by love. And I think the thing that is hardest about profound mental health problems is the disconnect, that they might not feel that reality. So it's a mess. 

I have a loved one diagnosed with schizoaffective disorder and I know how things just happen and boom they're back to delusional. Is this dc qualified with your county board? What are they advising you? This does not sound like a dc who is easily employable. That's why I'm saying transition, long term, that's the biggest question. Nuts, my ds isn't diagnosed schizoaffective, but his level of (pick words) is such that he will be a challenge to employ full time. I don't think he can handle it. I put a lot of thought into what it's going to mean for him to have a GOOD LIFE and how we can build that. That good life at 18 or 20 isn't going to happen by accident. I don't think "school" is the most important thing. 

But that's just me.

[Cosmic Ripple]

He hasn’t gotten worse since life outside has shutdown. Arguably, he’s doing better. He is still having eVisits with his psychiatrist and therapist. The medications have always been a very difficult balancing act. Risperdal and Abilify made him gain so so much weight and his cholesterol went to a scary level that we had to change again and again. He’s now on less than he ever has been before, but I’m currently comfortable with this balance. He has had GeneSight testing for medications. We also do know a lot about our genetics because of some severe health problems within the the family unrelated to him. I don’t want to go into too much detail publicly, but we do know all of this (aside from Tourette’s which comes from my husband’s side) is genetic and not likely to just go away. We have a very thorough geneticist. (Yes, we do have methylation issues, but I’m fairly sure those are pretty widespread among the general population.)

I’m mostly looking for day to day advice and camaraderie.

As for what I hope for him at age 18 is that he be able to pursue a path that contributes to society and that he can live independently. On alternating days, I can see him achieving at a high level... or never being independent. It all feels possible, honestly. 
 

I’ll look at the ELSA forms. Thanks!

[Cosmic Ripple]

9 minutes ago, PeterPan said:

Is this dc qualified with your county board?

What does this mean? I assume dc = dear child. What does it mean to be qualified with the county board?

[Cosmic Ripple]

2 minutes ago, CuriousMomof3 said:

My kid uses P2Go, or speak for yourself, depending on various things.  Is he a full time AAC user, or does he sometimes have access to verbal speech?  My kid is in the latter category. 

He typically has access to speech. 

[PeterPan]

9 hours ago, Cosmic Ripple said:

Yes, we do have methylation issues, but I’m fairly sure those are pretty widespread among the general population

The Genesight testing doesn't get into nearly what could be done. We got most of my ds' aggression tamed down by working on his methylation defects. If you run 23andme and run the raw data through KnowYourGenetics.com (free)  you'll get a better analysis. There's a COMT gene, VDR, some other things, and they're easily treatable. It sounds like he has b12 issues, etc. too. There's a gene MAO A that is targeted with some meds and the gene isn't tested for by 23andme. You'd need to run whole exome to get that data I guess. I got it because I participated in a different study. Psychs are not doing nearly enough and as much as what could be done to use genetics to stabilize mental health. Did you look at TPH2? 

Like I said, I don't see how you get to independent, stable, employed, etc. till that is dealt with. And yeah, my loved one takes an astonishing cocktail to keep stable and yes the side effects are horrific. (tardive dyskinesia, memory loss, etc.) It's why I've worked my BUTT OFF looking for genetics explanations, because we have to treat as much of this as we can figure out at the real root problems. Psychs certainly aren't. Then whatever we can't figure out we'll treat with the meds to get him the rest of the way. 

You can get whole exome testing for around $350 these days. Someone on the chat board posted about a company doing it for that price. Or the $69 sale version of 23andme would get you a long way and get you WAY more info than Genesight did. The problem with guessing on methylation issues and not having the genetics is you don't know who has what. I have both COMT and MTHFR defects, so my issues are contradictory. My kids got one of each. So sometimes you really need the actual genetics to sort it out. 

https://sparkforautism.org  Here's the link for SPARK. It's free and it's a nationally funded study you can participate in. Your whole family would participate, and as long as you submit 3 or more samples they'll give you a consult with results when the analysis is done. Given the complexity of your situation, there may be a profile or something that would turn up. It might connect you with more people or resources.

9 hours ago, Cosmic Ripple said:

What does this mean? I assume dc = dear child. What does it mean to be qualified with the county board?

If you're in the US, your county should have a board of developmental disabilities that services people who qualify. Your state will have criteria. In our state they have a list of areas and you need to be impacted in at least 3 of the 8 areas. (don't quote me on the number, but that's the jist) So SLDs, communication, developmental, mental health, etc. are areas. And your ds would assuredly tick enough to qualify. In our state, a worker would come interview you, possibly chat with him for a few minutes, discuss what you need, help you get connected with resources, possibly offer funding. 

The county board of disabilities serves as your coordinator of access. Say for instance you were to need an emergency placement during puberty in the next few years. Having him qualified and on their list makes it easy for them to convene a meeting and coordinate funding and get you all the available help and options. They do transition services also, and those usually start in our state at age 14. They put you with a transition services coordinator and have access to programs and guide you into them. You can also get funding through the county board and the funding can be used for things that aren't necessarily covered by insurance or other things you have access to. So we can use our funding to pay for a Y membership, summer camps, etc. Counties vary on how much the amount is. It can also be used for *respite* care and they can help you connect with your state database of respite care workers. 

[maize]

County board of disabilities isn't a thing in my state but there is a state level division of services for people with disabilities. They don't offer the kind of funding and support @PeterPan has mentioned in the past but they are a resource.

I agree that schooling is not the priority here. I would focus on anything you can find that improves health, and on building life skills. For education, do what you can to find and encourage joy.

I fight tooth and nail for my family's mental health, and sometimes that means that academic learning sits on the back burner.

[PeterPan]

9 hours ago, Cosmic Ripple said:

I’m mostly looking for day to day advice and camaraderie.

I tagged some other people in your thread, so give it time for people to trickle in. Has he gone through puberty yet? Every time my ds goes through a growth spurt, he gets harder and we have to go back and tweak, up things, get it balanced again. People have told us to hang on tight for puberty, and I'm not sure when that will hit. We could be in the cusp of it for all I know. Of course I'm not sure he has an facial hair, that kind of thing yet. Maybe that's when it coincides? When I talk with people irl, they're saying 14. That's why I'm mentioning things like respite, getting qualified with your county board, continuing to work HARD on mental health, because you could have more ahead if he hasn't hit puberty hormone surges yet. At least that's what my people are warning me.

If you live very rural, have you tried looking for a Facebook support group for a major city near you? Probably try the autism (so big city name autism parents support group, something like that as the search). There's also a national org NAMI https://www.nami.org/Learn-More/Mental-Health-Conditions that has local/regional supports. They showed up at an autism fair in our area, so apparently they're opening to supporting the more complex autism+mental health families. To me the forums here are awesome for that meta level, talking theory, research, but then when I need local resources I need that local support group level. So if you're more rural, maybe try joining a group in a city that is farther away be still in your state. They might be cool with that. 

10 hours ago, Cosmic Ripple said:

He hasn’t gotten worse since life outside has shutdown. Arguably, he’s doing better.

That's INTERESTING. Why do you think that is? My ds had a hard time with all the transitions and driving to sessions, so for him doing teleservices has been a great reprieve. But my ds is socially motivated, so he gets squirrelly without people. We've been stepping up services to meet that need. So just thinking about your ds, was there something that was hard for him and that has changed by being home so much? Do you want to continue that change or does that show you an area where he needs more support? For us, I'm hoping to retain teleservices. I just feel like hours in the car multiple times a week wasn't really that valuable, lol. 

13 hours ago, Cosmic Ripple said:

I find it hard to balance making certain we cover what I think we should in certain amounts of time with his more sporadic bursts of manic energy and surprise time off needed.

I'll just ask a nutty question, because I'm wondering if maybe what we do is radically different from some people. When he is having a bad day, does he *continue* his routine (not academics, but the routine of his life, the things he chooses to do) or does he change the routine? I don't know, I'm just wondering and trying to get a picture. My ds has a routine, and his academics sort of weave into it. So if he's having a hard day, then he's going to do his routine and just not do the academics. If he's having a REALLY bad day, his routine will go into a much more reclusive iteration. It's very hard to get my ds into a routine where he does what *I* want when we wakes up, blah blah. He's pretty much his world, his way, and I join in and blend in and make demands. And yet it's that ideal, like oh they wake up and do what we had planned or oh it's a bad day and they wake up and do what they need to, not our plan.

I don't know, just asking.  @wendyroo has a lot of structure and ways she rolls. I always admire that, and we honestly don't quite get there. Ds is his own force and we just have to roll with it. I mean, maybe we don't, but it would probably take a residential program, something prison like to overcome his bent. If we enrolled him in school and he didn't want to be there, he wouldn't go. It's not like you just FORCE bigger kids to do something. 

You're mentioning the writing issue. What is it you're trying to do? Like @CuriousMomof3 says, scribing is highly appropriate. My time where ds is able to work is so valuable that I don't spend a lot of time fighting over what isn't essential. Communication is essential. In some of the AAC apps, you can export what they write. If he is cool getting out his thoughts that way, boom that would be golden. He could write whole paragraphs, whatever that way. If he can learn to text, that's cool. I'm in the all of the above camp on communication.

Have you ever looked into Interoception?  https://www.kelly-mahler.com/what-is-interoception/  there's a lot of research being done on interoception and mental health. So interoception is affected by his autism and his communication difficulties, but it's essential for him in advocating about his mental health. She has broken the intervention into phases, where phase 1 is your body and phase 2 delves into emotions. So with ds, we're in this sort of phase 2 stage now, where I'm trying to help him make the connect between the things he's being asked to take and his symptoms (affective and body). There's a point where I feel like I can look at data but I really need whatever he *can* communicate to me. We're doing things like checkins for mental health now where we use parameters. Maybe his pdoc people are doing that? I don't know, just something to look into. She also has an active FB group that could connect you with info and resources.

[Cosmic Ripple]

1 hour ago, PeterPan said:

The Genesight testing doesn't get into nearly what could be done. We got most of my ds' aggression tamed down by working on his methylation defects. If you run 23andme and run the raw data through KnowYourGenetics.com (free)  you'll get a better analysis. There's a COMT gene, VDR, some other things, and they're easily treatable. It sounds like he has b12 issues, etc. too. There's a gene MAO A that is targeted with some meds and the gene isn't tested for by 23andme. You'd need to run whole exome to get that data I guess. I got it because I participated in a different study. Psychs are not doing nearly enough and as much as what could be done to use genetics to stabilize mental health. Did you look at TPH2? 

Like I said, I don't see how you get to independent, stable, employed, etc. till that is dealt with. And yeah, my loved one takes an astonishing cocktail to keep stable and yes the side effects are horrific. (tardive dyskinesia, memory loss, etc.) It's why I've worked my BUTT OFF looking for genetics explanations, because we have to treat as much of this as we can figure out at the real root problems. Psychs certainly aren't. Then whatever we can't figure out we'll treat with the meds to get him the rest of the way. 

You can get whole exome testing for around $350 these days. Someone on the chat board posted about a company doing it for that price. Or the $69 sale version of 23andme would get you a long way and get you WAY more info than Genesight did. The problem with guessing on methylation issues and not having the genetics is you don't know who has what. I have both COMT and MTHFR defects, so my issues are contradictory. My kids got one of each. So sometimes you really need the actual genetics to sort it out. 

https://sparkforautism.org  Here's the link for SPARK. It's free and it's a nationally funded study you can participate in. Your whole family would participate, and as long as you submit 3 or more samples they'll give you a consult with results when the analysis is done. Given the complexity of your situation, there may be a profile or something that would turn up. It might connect you with more people or resources.

I mentioned GeneSight because we were talking about medications, not because that was what I had considered genetic testing. Other members of his family (including me) have had whole exome sequencing done through a major research university. We have a geneticist who is internationally renown. We know a lot—arguably too much—and I have a different kind of worry about it all. I am homozygous C677T for MTHFR, so we’ve assumed he has at least one copy. But, honestly, that is a very common mutation and we know so much more about that is *not* common about our genetic material that it doesn’t play a large role in our lives. Spark has contacted us and it’s only on my list of things to check out. I appreciate your willingness to help, but I won’t answer any more questions of genetics. Hopefully what I’ve said here is enough.

 

We have local resources. I’m looking specifically for adaptations for homeschool. I have a lot of trouble explaining what he’s like to people who don’t know him really really well. People constantly underestimate him if they only know his difficulties. But, he’s capable of completing grade-level schoolwork. He can usually speak well. He has a very high IQ. He functions at a high level for perhaps 80% or more of the time, but then will suddenly function at a low level for a period of time (and even that isn’t a fair assessment of his ability to sum it up in this way). 
 

I know it’s not a popular thing to say, but I want more for my kids than for them to “be happy”. I want them to contribute to society. If this also makes them happy, that’s great. 
 

He is not through the other side of puberty yet and doesn’t have facial hair. 
 

We live in a city. I do have local resources, but don’t love all of them for a variety of reasons. Honestly, a big reason is the constant assumption that he can’t become a productive member of society. To be frank here, people told my grandparents this about my father and my parents this about me. And it was false. My father was a well-respected head scientist and I’m a functioning wife and mother. We do have some things set up with our lawyer and we aren’t worried about him being homeless or uncared for as an adult. But, other members of my family have spent their entire lives in institutions and I refuse to let that be his path. 
 

Onto some other questions about things I’d much rather discuss here:

Better With Things Shut Down: I assume the largest factor here is that more kids are available to talk to via methods he is most comfortable with (not in person). Friends are difficult for him to make and keep. He has one best friend who he talks to daily, but she has very firm boundaries with him (good for her!) and will sometimes not speak to him for days, which always sets of a tailspin reaction of emotions with him. That’s probably his single largest stressor.
 

But, currently, his cousin who he is close with is allowed more screen time than usual and can play Minecraft with him while they talk on the phone. I’ve had two other friends of mine ask if their kids who are going stir-crazy can play with him as well. Again, these are kids who aren’t normally allowed this amount of device time and my kid prefers to speak to them on the phone as they play. So, widening his social circle is what I think is currently helping him.
 

We’ve known this was an issue for a long time and have struggled to find appropriate social outlets for him. We have an ongoing conversation about it with his therapist. He’s off-putting to a lot of local parents not just because of what I’ve shared here (as if that wouldn’t be enough), but because he is not straight (probably gay, but he’s still figuring that out). So, while other local homeschoolers have consistently been kind about it, it can be somewhat of an issue when his goal is to forge stronger friendships or even one day have a crush, etc. We live in a very conservative state in the US. He is very very “out” verbally and with his clothing choices. 
 

We were making some headway when everything shut down. There is a local teen meetup that will be perfect for him...when he turns 14. Additionally, we’ve tried to steer him more and more into theatre because of its generally inclusive vibe. He was in a musical about a year ago and just THRIVED socially for a short period of time there. He was even nominated for a local theatre award for his part. He’s naturally very good at acting and music. But, he’s also very gun-shy about performing because of his severe Tourette’s. He was going to be helping on a musical in June backstage, but it has now been cancelled. Theatre is definitely an avenue we have been working on. Anyway, the friend thing is why I think he’s been doing better. 

 

Structure: His weekdays (good and bad) are highly structured. He prefers this. I do sometimes worry that he may use hallucinations as an excuse to coast in school for an afternoon. My rule is that he doesn’t get “free time” use of devices until 3:00 PM and that doesn’t change when he has a sick day (a word we use to include any kind of sick). This is also the rule for his younger sister who typically attends public school. His weekends are much freer, but still have end caps of morning and evening routines, plus mealtimes (and specific meals on specific days at that...although we do sometimes work with him about being flexible with change because: life happens). I would love to connect with someone else who has a similar situation to know how they handle the periods of time when their child cannot do as much as normal, but aren’t quite at the emergency level. 
 

Emergency Mode: For instance, the last paranoid psychotic episode where there was a significant danger that lasted for days was roughly two years ago. Except for his first one of these (at age 9), schoolwork does stop. (Or at least what schoolwork typically looks like stops. I often have tried to keep the words and structure there as much as possible.) We will soldier on as normal with accommodations while we can because we never know the size or depth of each break from reality. Our go-to when he’s at his worst is to have him rearrange heavy furniture.
 

(I’m sure that sounds very bizarre, but is actually a good representation of why I even made this post. The local resources and such would not give us advice like this. We figured it out through trial and error and our intimate knowledge of our kid. I’d love to have give and take with other parents because I think the families themselves are the actual real experts here.)

His psychosis tends to co-occur with a certain manic energy and tapping into his perfectionist/OCD tendencies can bring him out of his head and into reality more. (His psychiatrist is resisting formal diagnoses here because of his age and that’s fine with us for now.) Moving low-to-the-ground heavy furniture (like couches) independently or more delicate and larger items (like bookshelves) with help takes up a lot of his energy and puts it to use productively. Then, he gets very particular about how they line up and this brings his focus away from the shadow people or the voices and back onto something in front of him. Our whole house can get rearranged several times, but everyone stays safe.
 

Non-Emergency, but Needs Support Mode: He does not use AAC very much. It was also not originally purchased for him and is set up for use by another family member in the home. He’s familiar with it though and typically prefers the keyboard to speech function unless very overwhelmed. But, over a course of a year or so I began to recognize certain patterns of behavior (his tone of voice will change, he will begin to stutter and then eventually stop speaking, he stares off, he may bang his head) that if dealt with early on in the process with sensory tools, hydroxyzine, and access to the AAC to use until the moment passes (typically 1 - 4 hours), he often doesn’t need to alter his course very much. We may be able to finish the school day as planned.

Head-banging is typically my cue to make more drastic changes, but even then it’s always a very very hard balance to find. And, I suppose it’s some of these examples that make it difficult to express and understand the whole picture here. I once took some video of him with diminished speaking and understanding ability (he was giving one word responses that were not always appropriate) and repetitive head banging. A few hours later, I have pictures of messages he was able to write to explain with a very high level of detail and complex language about “the depth of his sorrow” (his actual words) a few hours. His message even included a heart-melting apology. And then, a few hours after that, he was a like any typical kid at family meal time. He’s just ALL of those things. If that makes sense. These videos and evidence are personal and useful to share with his professionals, but are not things I want to share with others. So, his entire reality can be much more difficult to properly explain. 

 

Don’t Worry About School: I absolutely do not want to give up on his regular schoolwork. He’s working on Art of Problem Solving Intro to Algebra right now and is writing a research paper about Galileo. He’s a capable kid. I could absolutely use direction on what day to day school looks like for any other complex kids like this. (“2e” just doesn’t explain this) 

I’m considering putting literature and read alouds at the end of the day or week so that we could have those to switch to when things go south. I also might bank some ideas for large motor activities as well. That’s the kind of thing that could really help me.
 

He currently has a subject we call “Practical Life” that I’ve been considering dropping as a formal school subject next year. I can still plan things to share with him in less formal ways outside of school time. (He does best with a formal feel to homeschool and I realize that’s not everyone’s cup of tea.)

I give him three rocks in the morning on school days (or rather they are in the zipped outer pouch of his fidget pouch which he is responsible for getting off of the cart each morning). If he wants to talk about something completely off the wall, he has to give me a rock and we can stop what we are doing (up to 3 times each day) to research something random or for him to tell me about something random...for up to 5 minutes (which is typically enough, when it’s not we agree to talk about it at a later date). I indulge his ideas (mostly spoken as when he’s having trouble with spoken language, he typically stays on topic) whenever they are even loosely based on what we are studying. He makes a lot of creative and interesting connections and I don’t count those. If he can’t clearly articulate how his thing connects to his current thing in school, he has to spend a rock or when out...I won’t indulge him and will consistently redirect him back to his work. This does seem to help him quite significantly for such the small thing that it is. Hallucinations and delusions can come quick, but there is still a path to them in his mind and it helps to keep him focused and “in the lines” if that makes sense. 
 

We do stop and backtrack and talk about life skills as needed, but I’m so often making this up as I go. A lot of it comes from an informed place, but just without concrete tools.

 

Handwriting: I probably do just need “permission” to stop forcing the issue. I’m having trouble letting go, I guess. A consistent signature and typing does really sound like a common sense approach here. I’ve heard the “let him type” over and over for a few years now and I’ve just remained stubborn, I suppose. I guess my “never give up on him” attitude may be misplaced here. I carry some misplaced guilt with that as well.

[Cosmic Ripple]

19 minutes ago, CuriousMomof3 said:

 

I agree that educational goals often need to take a back seat to mental health, but I'll also say that for my kid, and he may be unique in this, academics are what provides the structure for him to be able to engage, and engage him cognitively so that he can get a little break from the anxiety.  Some of that is that my kid has physical disabilities, and academics are something he does well, whereas most of the tings that kids his age dot that are "play" he can't really do.  Some of it is that because of his history the role of student was much more familiar to him and felt safer than the role of family member.  Neither of those may apply to your kids.  

 

Yes!! I would love to hear more about your day to day, if you are willing to share.

Officially and philosophically I agree with that mental health is more important than Algebra.

But, practically speaking, sometimes that actually looks like continuing with studies or altering them in intelligent ways. (I’m looking for more of those intelligent alterations here. 😉) He definitely *usually* does best when his mind is appropriately stimulated. 

[maize]

Absolutely take permission to let go of handwriting; plenty of productive, contributing members of society don't have or use legible handwriting. Typing is great, and speech to text is becoming ever more common in regular life as well.

Since structured school seems to benefit him it sounds like you are managing that well.

My kids are not as highly impacted as it sounds like your son is, though we do have several similar issues/diagnoses. Theater has been great for my kids as well. Even my kid with pretty severe tics has done well with it. My kids also really benefit from lots of physical activity, something you haven't mentioned other than the furniture moving. Does your kid have physical activity built into his day? That's been a harder one for us with things like tumbling shut down for now.

[Cosmic Ripple]

17 minutes ago, CuriousMomof3 said:

As far as exercise, I will say that I don't have that exact issue for my kid with mental illness, but for my other kids who are living with an enormous amount of environmental stress, exercise has been key.  

I build it into their schedule, as something that has to happen, not as a choice.  Sometimes the activity is assigned (e.g. they both do an online tae kwon do class mid morning), and sometimes it's more open (e.g. the schedule will just say "go outside and exercise") but they could choose basketball or four square or spikeball, or whatever other options work in our not huge back yard) 

Thank you very much for all of this. I’m going to take more time to digest what you’ve said, so I probably won’t be back to respond more thoughtfully and ask follow up questions until next weekend (and partially because I have to give myself limits or I’ll never complete anything 😂). I just didn’t want you to think I didn’t see or like what you’ve shared. I do! Feel free to add more ideas if you think of them! These are definitely the types of things I was hoping for! I especially like you color classification thing and want to get it some more time to think how I could best adapt that for our use (while also teaching it *to* him as a tool for his own life planning in a similar way to the “spoon theory”). 
 

Anyway, thank you! I wanted you to know my absence doesn’t mean I don’t appreciate or can’t use your suggestions. Actually, my health situation *is* something you could probably understand quite easily and is most definitely a factor at play here. There always seems to be so many many moving parts to our story that I leave a lot out in an attempt to be relatable. Just know that I’m also familiar with TPN and ports (on my 3rd) and ventilators and home health and guesses about how long people will live (and the inevitable emotional fallout of hearing that, then the fallout of outliving that) and and and. I’m sorry you are too. It’s definitely hard to explain to others and after living our lives bouncing from one emergency to the next for years, I made a choice to not live that way. I can’t easily explain what I mean by that, but I have a feeling you may understand. I’m focusing on the “ordinary” because it’s the ordinary that matters. 

[Miguelsmom]

Can I PM you

 

[Cosmic Ripple]

3 minutes ago, Miguelsmom said:

Can I PM you

 

Yes