At what point do you give up?

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, I follow an account on IG by @nicolegottesmann which features her non-speaking autistic son, Gabe. He was totally unable to communicate and resistant to almost everything when he was younger, but as a teen he has just recently starting typing into an AAC device, they've found thing he loves (music and poetry) and he had started trying new activities in supportive programs (e.g., white water rafting and boating). Life is still a struggle--they drive to his special camp because he can't handle an airplane and restaurants are still really hard, but he's made tons and tons of progress as a teen. His mom has a really gentle approach with him (and I'm sure she's often really, really frustrated) but her gentleness with encouragement seems to have really brought him a long way.

He'll never live independently and has major struggles, but he has come so far and they have far more moments of real joy these days. You might find the account interesting to follow.

I find those kinds of things incredibly depressing.

NP here, I don't understand this response. I also watch this family's videos. The young man has come far.

OP, my first thought was-maybe the mainstreamed school environment isn't right for him at this time. I'm not an educational expert, just a parent, so I don't really know exactly what might work-just that his current setting doesn't seem to. Maybe a smaller, more contained setting might be better.

Also-has selective mutism been ruled out?

Has he ever had a trial with an AAC device? Maybe he would be more responsive using one-again just throwing out ideas here.

As far as all the therapies-while I think they are all good things to do, maybe you guys need a break from one or more of them. It's a lot, I know. Maybe take a break from one or more while you get the school stuff sorted out.

[Anonymous]

Not OP but just wanted to thank the posters who have contributed so much time and expertise, especially HS SPED poster. Wow. Much insight and understanding but most of all the kindness in itself is an encouragement to me.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:2nd grade is far too early to say how he will be as an adult. 2nd grade is also to early to give up. Children are developing so much at that age. You have to stay on top of everything now. It will be a lot but it will worth it.

Comments like this are the worst and least helpful. It's entirely possible, if not probable, that BOTH of these statements are false. That's why OP is asking. How much is ever enough, and at what cost? And statements like this reinforce the mommy martyr, because let's be honest: no dad is ever spending 30 hours a week and putting his job at risk taking their kid to unproven therapies. Statements like the PP's are ALWAYS directed to moms.

I advise you to seek therapy. No one said anything about genders or parental roles. Perhaps you are projecting your own trauma within the given context? My statement remains the same. It will be worth it. I never said he will show growth. I said it will be worth it.

DP. No, I agree - this pressure is largely on moms. And also that it is nonsensical to say “it will be worth it” with zero reference to the kid or the therapies. You literally have no basis to say that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, I follow an account on IG by @nicolegottesmann which features her non-speaking autistic son, Gabe. He was totally unable to communicate and resistant to almost everything when he was younger, but as a teen he has just recently starting typing into an AAC device, they've found thing he loves (music and poetry) and he had started trying new activities in supportive programs (e.g., white water rafting and boating). Life is still a struggle--they drive to his special camp because he can't handle an airplane and restaurants are still really hard, but he's made tons and tons of progress as a teen. His mom has a really gentle approach with him (and I'm sure she's often really, really frustrated) but her gentleness with encouragement seems to have really brought him a long way.

He'll never live independently and has major struggles, but he has come so far and they have far more moments of real joy these days. You might find the account interesting to follow.

I find those kinds of things incredibly depressing.

Not sure if you are OP but I would stop for a minute to think about that. The question here is whether we should be depressed and “give up” just because we cannot make our kids NT. Or should we enjoy them for who they are and recognize that their lives have value and pleasure intrinsically? That doesn’t deny anything of our hardships.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Has he completed the ABLLS-R? What’s his EVT/PPVT scores? Have you had ADLs evaluated? How often is he getting services outside of school? Why have you allowed mainstream placement when he has so many difficulties?

Yeah, the school did testing for the IEP, and the ABA company does testing as part of the annual renewal of prior authorization. The common theme is that they all warn that certain parts of the scores don't mean anything because he won't cooperate.

I've tried to maintain hope because in some cases I know he has skills that he won't demonstrate. For example, he was able to spell before he demonstrated reading, since he wouldn't read on command and generally doesn't talk. And his vocabulary is decent based on what he can type. So I had hoped that speech could pull more of that out of him, which would also help with school, but progress has basically been stallled for a few years.

He probably shouldn't be in a mainstream classroom, but his doctors and therapists have heavily recommended he stay in that placement because lower elementary self-contained classrooms are poor environments academically and for peer interaction. I've seen the program he'd probably alternatively go into, and there wasn't a single verbal child in the group.

We're in a VERY similar situation, OP. We agonized over the decision to move from mainstream to self-contained. Our daughter is bright and has been able to read since toddlerhood. But she doesn't do the work at school.

I'm assuming you know about PDA...? If not, look into it. Some of the recommendations are very helpful, like using declarative language and reducing demands.

I wish there were better placements out there for our kids, but there doesn't seem to do. We're just limping along, hoping for the best.

In my experience, both as a parent and an educator-- kids learn when they're ready to learn. We play a much smaller role in learning than we'd like to think...

Parent of a 7 year old

[Anonymous]

Anonymous wrote:

It sounds like you were influenced by the whole dogma of “early intervention NOW or the window will close!!!” It is so important for SN parents to realize that their kids childhood is also a childhood and not a disease to be treated.

[phone]

[Anonymous]

Ok, OP. Now I've read through the whole thread-- this sounds exactly like PDA (pathological demand avoidance, also known as persistent drive for autonomy)

There are a lot of resources out there if you know where to look.

At Peace Parenting: https://www.atpeaceparents.com/

Declarative Language Handbook:
https://www.amazon.com/Declarative-Language-Handbook-Thoughtful-Challenges/dp/1734516208/ref=sr_1_4?dib=eyJ2IjoiMSJ9.KzDvauJAUTS1o0ykWHhFOSHSUdn-32-0XdjaNxN4E2zUPHOWhZ01tcCkCwG82JhbKj2pXly7jcbCNB9dftkpe3Wvb4ZVcDwNbgxjtMAOq2LXeYO0pb_LxFMw9soomNQB1NcmZI8bJ96Ku2qXwfwoOYCLPaf6MzBVZywUWFzKiufwHol8lgjrlqEiRa3rCH_e13fBLRVRkJAObrXUzkEXORuOL0VAqKkIXPj5u3249NHotaylGOFGDRlkqo12gOZB3hoMlXVtyXzYMoovAv_C5TUoxXjuwwY6RiQ8356SYLg.Q0i1xuFwQQXuqK1L3sxHDkz1r2T-YDSkSKeHLnancwI&dib_tag=se&keywords=pathological+demand+avoidance&qid=1756938683&sr=8-4

Book for kids (and adults!), All About PDA:
https://us.jkp.com/products/all-about-pda

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Has he completed the ABLLS-R? What’s his EVT/PPVT scores? Have you had ADLs evaluated? How often is he getting services outside of school? Why have you allowed mainstream placement when he has so many difficulties?

Yeah, the school did testing for the IEP, and the ABA company does testing as part of the annual renewal of prior authorization. The common theme is that they all warn that certain parts of the scores don't mean anything because he won't cooperate.

I've tried to maintain hope because in some cases I know he has skills that he won't demonstrate. For example, he was able to spell before he demonstrated reading, since he wouldn't read on command and generally doesn't talk. And his vocabulary is decent based on what he can type. So I had hoped that speech could pull more of that out of him, which would also help with school, but progress has basically been stallled for a few years.

He probably shouldn't be in a mainstream classroom, but his doctors and therapists have heavily recommended he stay in that placement because lower elementary self-contained classrooms are poor environments academically and for peer interaction. I've seen the program he'd probably alternatively go into, and there wasn't a single verbal child in the group.

We're in a VERY similar situation, OP. We agonized over the decision to move from mainstream to self-contained. Our daughter is bright and has been able to read since toddlerhood. But she doesn't do the work at school.

I'm assuming you know about PDA...? If not, look into it. Some of the recommendations are very helpful, like using declarative language and reducing demands.

I wish there were better placements out there for our kids, but there doesn't seem to do. We're just limping along, hoping for the best.

In my experience, both as a parent and an educator-- kids learn when they're ready to learn. We play a much smaller role in learning than we'd like to think...

Parent of a 7 year old

How do you avoid/reduce demands in a general education setting?

[Anonymous]

Anonymous wrote:Ok, OP. Now I've read through the whole thread-- this sounds exactly like PDA (pathological demand avoidance, also known as persistent drive for autonomy)

There are a lot of resources out there if you know where to look.

At Peace Parenting: https://www.atpeaceparents.com/

Declarative Language Handbook:
https://www.amazon.com/Declarative-Language-Handbook-Thoughtful-Challenges/dp/1734516208/ref=sr_1_4?dib=eyJ2IjoiMSJ9.KzDvauJAUTS1o0ykWHhFOSHSUdn-32-0XdjaNxN4E2zUPHOWhZ01tcCkCwG82JhbKj2pXly7jcbCNB9dftkpe3Wvb4ZVcDwNbgxjtMAOq2LXeYO0pb_LxFMw9soomNQB1NcmZI8bJ96Ku2qXwfwoOYCLPaf6MzBVZywUWFzKiufwHol8lgjrlqEiRa3rCH_e13fBLRVRkJAObrXUzkEXORuOL0VAqKkIXPj5u3249NHotaylGOFGDRlkqo12gOZB3hoMlXVtyXzYMoovAv_C5TUoxXjuwwY6RiQ8356SYLg.Q0i1xuFwQQXuqK1L3sxHDkz1r2T-YDSkSKeHLnancwI&dib_tag=se&keywords=pathological+demand+avoidance&qid=1756938683&sr=8-4

Book for kids (and adults!), All About PDA:
https://us.jkp.com/products/all-about-pda

Yeah, I've long thought that. I know it's controversial as an "official" diagnosis, but I think it can be accurate as a descriptive term for a set of conditions and behaviors.

I use declarative language in stern tones at home with noticeable, albeit still small, success.

I've tried to get others to do the same. People get really weird about it, though. After one discussion, I thought there was 50-50% chance she was going to try to report me to CPS. Though, after about 6 months she started to inch in that direction. She later complained to me that people accused her of abuse, seemingly oblivious to my initial discussion with her.

My somewhat jaded view is that it doesn't really matter, though. Someone with PDA simply isn't going to be able to function in the modern world. They're going to end up either homeless or in prison.

[Anonymous]

I haven't read through all the posts, but I am sorry, OP, I have a brother growing up like your kids that you describe - and it was hard for our family, and for me as a sibling - to have what felt like a deadweight on activities of a sibling. I love him, but it was (and still is) hard. Just commisserating. I would say reduce your expectations, maybe spend some money/time on self-care if you can.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Has he completed the ABLLS-R? What’s his EVT/PPVT scores? Have you had ADLs evaluated? How often is he getting services outside of school? Why have you allowed mainstream placement when he has so many difficulties?

Yeah, the school did testing for the IEP, and the ABA company does testing as part of the annual renewal of prior authorization. The common theme is that they all warn that certain parts of the scores don't mean anything because he won't cooperate.

I've tried to maintain hope because in some cases I know he has skills that he won't demonstrate. For example, he was able to spell before he demonstrated reading, since he wouldn't read on command and generally doesn't talk. And his vocabulary is decent based on what he can type. So I had hoped that speech could pull more of that out of him, which would also help with school, but progress has basically been stallled for a few years.

He probably shouldn't be in a mainstream classroom, but his doctors and therapists have heavily recommended he stay in that placement because lower elementary self-contained classrooms are poor environments academically and for peer interaction. I've seen the program he'd probably alternatively go into, and there wasn't a single verbal child in the group.

We're in a VERY similar situation, OP. We agonized over the decision to move from mainstream to self-contained. Our daughter is bright and has been able to read since toddlerhood. But she doesn't do the work at school.

I'm assuming you know about PDA...? If not, look into it. Some of the recommendations are very helpful, like using declarative language and reducing demands.

I wish there were better placements out there for our kids, but there doesn't seem to do. We're just limping along, hoping for the best.

In my experience, both as a parent and an educator-- kids learn when they're ready to learn. We play a much smaller role in learning than we'd like to think...

Parent of a 7 year old

How do you avoid/reduce demands in a general education setting?

It is pretty much impossible. That’s why a lot of parents with PDA kiddos end up homeschooling/ unschooling.

I’ve been inspired by happyhandswith_hallie on Instagram. She’s doing great things homeschooling her PDA little girl

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Has he completed the ABLLS-R? What’s his EVT/PPVT scores? Have you had ADLs evaluated? How often is he getting services outside of school? Why have you allowed mainstream placement when he has so many difficulties?

Yeah, the school did testing for the IEP, and the ABA company does testing as part of the annual renewal of prior authorization. The common theme is that they all warn that certain parts of the scores don't mean anything because he won't cooperate.

I've tried to maintain hope because in some cases I know he has skills that he won't demonstrate. For example, he was able to spell before he demonstrated reading, since he wouldn't read on command and generally doesn't talk. And his vocabulary is decent based on what he can type. So I had hoped that speech could pull more of that out of him, which would also help with school, but progress has basically been stallled for a few years.

He probably shouldn't be in a mainstream classroom, but his doctors and therapists have heavily recommended he stay in that placement because lower elementary self-contained classrooms are poor environments academically and for peer interaction. I've seen the program he'd probably alternatively go into, and there wasn't a single verbal child in the group.

We're in a VERY similar situation, OP. We agonized over the decision to move from mainstream to self-contained. Our daughter is bright and has been able to read since toddlerhood. But she doesn't do the work at school.

I'm assuming you know about PDA...? If not, look into it. Some of the recommendations are very helpful, like using declarative language and reducing demands.

I wish there were better placements out there for our kids, but there doesn't seem to do. We're just limping along, hoping for the best.

In my experience, both as a parent and an educator-- kids learn when they're ready to learn. We play a much smaller role in learning than we'd like to think...

Parent of a 7 year old

How do you avoid/reduce demands in a general education setting?

It is pretty much impossible. That’s why a lot of parents with PDA kiddos end up homeschooling/ unschooling.

I’ve been inspired by happyhandswith_hallie on Instagram. She’s doing great things homeschooling her PDA little girl

I don't really understand that. If they can't handle school, they're not going to be able to handle the real world. And that's going to make it even more important for the parents to save whatever money they can for the lifetime of care that will be needed.

Who could possibly afford to homeschool under those circumstances?

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, I follow an account on IG by @nicolegottesmann which features her non-speaking autistic son, Gabe. He was totally unable to communicate and resistant to almost everything when he was younger, but as a teen he has just recently starting typing into an AAC device, they've found thing he loves (music and poetry) and he had started trying new activities in supportive programs (e.g., white water rafting and boating). Life is still a struggle--they drive to his special camp because he can't handle an airplane and restaurants are still really hard, but he's made tons and tons of progress as a teen. His mom has a really gentle approach with him (and I'm sure she's often really, really frustrated) but her gentleness with encouragement seems to have really brought him a long way.

He'll never live independently and has major struggles, but he has come so far and they have far more moments of real joy these days. You might find the account interesting to follow.

I find those kinds of things incredibly depressing.

You can find it depressing, but the mom has found a bunch of alternative therapies and activities that have connected with her son and that have allowed him to make progress. For instance, instead of OT, she's hired a personal trainer who is excellent with her DS and who pushes him to try new things while building strength and coordination. Her son seems to really respect the personal trainer and appreciates being treated like a 15 yo teen boy instead of a little kid in need of therapy. Her son wants to participate when he didn't really with OT. There are a bunch of examples like that which might be helpful. Or not.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Has he completed the ABLLS-R? What’s his EVT/PPVT scores? Have you had ADLs evaluated? How often is he getting services outside of school? Why have you allowed mainstream placement when he has so many difficulties?

Yeah, the school did testing for the IEP, and the ABA company does testing as part of the annual renewal of prior authorization. The common theme is that they all warn that certain parts of the scores don't mean anything because he won't cooperate.

I've tried to maintain hope because in some cases I know he has skills that he won't demonstrate. For example, he was able to spell before he demonstrated reading, since he wouldn't read on command and generally doesn't talk. And his vocabulary is decent based on what he can type. So I had hoped that speech could pull more of that out of him, which would also help with school, but progress has basically been stallled for a few years.

He probably shouldn't be in a mainstream classroom, but his doctors and therapists have heavily recommended he stay in that placement because lower elementary self-contained classrooms are poor environments academically and for peer interaction. I've seen the program he'd probably alternatively go into, and there wasn't a single verbal child in the group.

We're in a VERY similar situation, OP. We agonized over the decision to move from mainstream to self-contained. Our daughter is bright and has been able to read since toddlerhood. But she doesn't do the work at school.

I'm assuming you know about PDA...? If not, look into it. Some of the recommendations are very helpful, like using declarative language and reducing demands.

I wish there were better placements out there for our kids, but there doesn't seem to do. We're just limping along, hoping for the best.

In my experience, both as a parent and an educator-- kids learn when they're ready to learn. We play a much smaller role in learning than we'd like to think...

Parent of a 7 year old

How do you avoid/reduce demands in a general education setting?

It is pretty much impossible. That’s why a lot of parents with PDA kiddos end up homeschooling/ unschooling.

I’ve been inspired by happyhandswith_hallie on Instagram. She’s doing great things homeschooling her PDA little girl

I don't really understand that. If they can't handle school, they're not going to be able to handle the real world. And that's going to make it even more important for the parents to save whatever money they can for the lifetime of care that will be needed.

Who could possibly afford to homeschool under those circumstances?

Children that are homeschooled don’t just sit in their house all the time with zero real world interaction. That’s a strange assumption.

[Anonymous]

Anonymous wrote:I haven't read through all the posts, but I am sorry, OP, I have a brother growing up like your kids that you describe - and it was hard for our family, and for me as a sibling - to have what felt like a deadweight on activities of a sibling. I love him, but it was (and still is) hard. Just commisserating. I would say reduce your expectations, maybe spend some money/time on self-care if you can.

What ultimately happened to your brother? While my goal for my child was independent living, it's hard for me to imagine even a group home working out based on the path we're on.