At what point do you give up?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, this sounds really hard. I haven’t been exactly where you have been but I will offer my first thoughts most as commiseration. I have an older child with SN and a younger child with a physical disability. The way doctors and professionals have talked to us about the two different scenarios is night and day. With my child with SN we were given constant scare tactics and told we absolutely had to do a million therapies RIGHT NOW. Not everything was evidence based but if I was a decent mom I would do ALL the things. For my child with a physical disability everyone comforted me and counseled acceptance.

Some interventions helped my Sons child, some were exhausting (to both me and them) and frankly their growth has been different than what people seemed to predict. In someways better in others the struggles are still there. I think because some parents are in denial about their child’s SN doctors tend to use a lot of scare tactics and come across more definitively than they should. It’s ok to cut back. It’s ok to accept some things you never thought you would. It’s honestly not entirely in your control. Don’t sacrifice your relationship with your child for hopes that they might be different. I hope you can get more help, whether that’s respite care, a different setting at school or something.

Maybe therapy for you, too. That’s helped me a lot.

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.

Op here. For what it's worth, my son loves ABA, speech, and OT. (but absolutely hates school) I think in his mind it is like having his own adult playmate.

HS SPED again!

I'm curious what a session he enjoys looks like. You say here that it's like having an adult playmate, but in another post you say he can't engage in play if it's directed or initiated by an adult. I am particularly curious what an ABA session looks like in which the child is happy, but isn't following any directions, participating, or responding to the rewards.

Can you describe a session he enjoys?

Also, in your OP it seemed clear that ABA, speech, and OT are sources of stress for you. Where are the stress points? Is it the money? The time you need to spend taking him there, waiting for him, communicating with them that takes away from other things that are important? Is it that he struggles with the transitions even though he enjoys it when he's there?

[Anonymous]

Anonymous wrote:You aren’t making any sense. If he’s developmentally 3 he would not be mainstreamed or able to read.

Came to say this.

Maybe OP means in terms of his emotional self-regulation?

However, it might be other needs.

This is the second time in my career that I have a mainstreamed student who needs to be reminded to toilet. We don’t have a one on one for him. I can’t even set a timer, I’m supposed to monitor his clues such as posture. He’s in middle school. I know I am going to mess this up. There are 23 other children in his class.

[Anonymous]

HS SPED teacher here,

I want to be clear, I am sure you love your son and are trying really hard. I am also sure you are telling the truth as you see it, because when you are drowning in a situation, it's very hard to have a clear view. So, when I point out inconsistencies in what you're saying, it's not because I think you are lying or trolling. I just think that maybe, through questions, I can help you see the problem more clearly, and that seeing problems clearly is the first step to solving them. So, I hope you're able to see my questions in that spirit.

The one other thing that I will add is that it seems pretty clear to me, as an outsider who isn't impacted by the stress, is that there are skill deficits here. Seeing this as "of course he can hold a pencil correctly, but he's not motivated to." isn't helpful. More likely you have a child who doesn't have the skills to regulate, or to process new information while he's disregulated. So, while he can develop motor skills during a self selected and self directed activity like legos, he can't do the same thing in an adult directed task like writing. I think it's really telling that he managed to learn some pretty complex things (legos, potty training, reading, writing) when he was motivated and engaged by a task he selected and directed, but struggles to learn in a classroom where he isn't motivated, and doesn't have control over the tasks. That's not an easy profile to work with, but it's a very different profile from a globally delayed child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You aren’t making any sense. If he’s developmentally 3 he would not be mainstreamed or able to read.

Kids with autism (I'm making a guess based on OP's saying ABA) often have reading skills that outpace their other skills. It's not uncommon for an autistic 3 year old, or an autistic student with ID whose other skills are around a 3 year old level to read.

Mainstream classes are often the best places for kids with ID (not saying OP's child has it).

ABA does not imply autism.

Umm yes it does. That is a strange thing to say.

ABA stands for Applied Behavior Analysis. The definition of ABA is “the scientific study of human behavior”. This can apply to any behavior, for anyone, it is not limited to autism or any other disability for that matter. Because ABA is adaptable and personalized, it addresses specific skill deficits and behaviors across diverse groups. From young children to adults, ABA techniques can enhance social interaction, emotional regulation, academic performance, independence, and many other skills.

Dude. OP already said her child is autistic. The vast majority of kids in ABA have autism. Yes the techniques in ABA can be found in other types of behavioral modification that are more broadly applied, the correct assumption when someone mentions ABA here is that their child has autism. In addition as you hopefully know, usually insurers will not cover ABA if there is no autism diagnosis.

If you want to start a thread on ABA for conditions other than autism feel free but you are not helping anyone here.

That won’t be necessary. I find this board to be disingenuous and rude to outsiders and won’t be sharing my knowledge and experiences any longer. Have a nice day!

Lol OK. Hopefully you won’t actually get near any of our kids because you sound like a disaster.

I really wish people like you would stop driving away knowledgeable members on this board. It's clear they understood their subjects, but your rudeness overshadowed their expertise. They certainly aren't the first professionals to leave due to your pretentiousness. Consider that not everyone can afford those pricey services, and many of us genuinely appreciate insights from informed sources. I sincerely hope they return, feeling welcomed here, and can overlook trolls like you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You aren’t making any sense. If he’s developmentally 3 he would not be mainstreamed or able to read.

Kids with autism (I'm making a guess based on OP's saying ABA) often have reading skills that outpace their other skills. It's not uncommon for an autistic 3 year old, or an autistic student with ID whose other skills are around a 3 year old level to read.

Mainstream classes are often the best places for kids with ID (not saying OP's child has it).

ABA does not imply autism.

Umm yes it does. That is a strange thing to say.

ABA stands for Applied Behavior Analysis. The definition of ABA is “the scientific study of human behavior”. This can apply to any behavior, for anyone, it is not limited to autism or any other disability for that matter. Because ABA is adaptable and personalized, it addresses specific skill deficits and behaviors across diverse groups. From young children to adults, ABA techniques can enhance social interaction, emotional regulation, academic performance, independence, and many other skills.

Dude. OP already said her child is autistic. The vast majority of kids in ABA have autism. Yes the techniques in ABA can be found in other types of behavioral modification that are more broadly applied, the correct assumption when someone mentions ABA here is that their child has autism. In addition as you hopefully know, usually insurers will not cover ABA if there is no autism diagnosis.

If you want to start a thread on ABA for conditions other than autism feel free but you are not helping anyone here.

That won’t be necessary. I find this board to be disingenuous and rude to outsiders and won’t be sharing my knowledge and experiences any longer. Have a nice day!

Lol OK. Hopefully you won’t actually get near any of our kids because you sound like a disaster.

I really wish people like you would stop driving away knowledgeable members on this board. It's clear they understood their subjects, but your rudeness overshadowed their expertise. They certainly aren't the first professionals to leave due to your pretentiousness. Consider that not everyone can afford those pricey services, and many of us genuinely appreciate insights from informed sources. I sincerely hope they return, feeling welcomed here, and can overlook trolls like you.

Agree. It's baffling and really disappointing that this even has to be mentioned. I thought this was a supportive space where people help each other out. There's one OT here who really seems intent on driving away anyone who brings up ABBA, I bet it’s them. Honestly, that person really needs to lighten up.

[Anonymous]

If he enjoys OT and other one-on-one supports, could you spend one year cobbling together those types of services along with maybe a simple art class, and using a babysitter the rest of the time? Just to give him a break from the school setting that seems to be fueling his anxiety and avoidance. Hopefully reset, see what he’s like without the bombardment and then consider your options.

Classrooms are chaotic. Judgment and shame is endemic—and you are also understandably fraught with expectation and stress. I would try to step away in whatever way is financially viable while he is still young.

What are summers like?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Troll

Doesn't seem like a troll to me. Sounds like a frustrated parent but also a parent who is likely coming to terms with the fact that their child won't get to the level they were hoping they would with all these interventions. It's still a difficult thing to process.

Hopefully there are better programs available and OP should certainly look into it. BUT to the extent the issue is behavioral I think taking a closer look at what is going on is important. A classroom observation or several to really understand what is going on could be helpful to reset. In my experience the tenor of the communication coming home from school created an impression of total dysfunction that was not really the case. Schools just tend to communicate in an escalated manner and don’t communicate the positives or overall picture.

OP here. I've had pretty good relationships with his classroom teachers and special educators. I've had some classroom visits, and if anything, the situation is worse than they say. Completely ignores most instructions or questions and wanders around the room frequently. With 1:1 attention, he might get half-way a worksheet/project, but with absolutely no regard to doing it correctly.

I've never before met anyone in my life who literally does not care what you say or think. Whether you're mad or happy toward him, he doesn't care at all. I wish I was exaggerating. Even rewards don't work on him.

Bottom line is you saying that his program is not working. What kinds of goals are on the IEP and how close do they get to him meeting those? Maybe the goals aren't even appropriate if there's a ton of learning issues that affect him and there aren't any goals addressing those issues. I was struck to by your statement that your goals are for him to be able to live independently. That's a long way off, when one of your frustrations is that he doesn't even seem to respond to whatever emotions you are expressing. Any professional classroom observations, functional behavioral assessment?

[Anonymous]

Anonymous wrote:If he enjoys OT and other one-on-one supports, could you spend one year cobbling together those types of services along with maybe a simple art class, and using a babysitter the rest of the time? Just to give him a break from the school setting that seems to be fueling his anxiety and avoidance. Hopefully reset, see what he’s like without the bombardment and then consider your options.

Classrooms are chaotic. Judgment and shame is endemic—and you are also understandably fraught with expectation and stress. I would try to step away in whatever way is financially viable while he is still young.

What are summers like?

I'm not sure what you're suggesting. Take him out of school for a year? I don't think that's legal.

We wouldn't be able to do it anyway. We both work, and his needs are too challenging for babysitters. He has a full-time RBT over the summer, which is how we get through the summer (with a babysitter, too). We wouldn't be able to afford that for a year.

He can't do activities like art. I'm not exaggerating when I say he ignores instructions/commands.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Troll

Doesn't seem like a troll to me. Sounds like a frustrated parent but also a parent who is likely coming to terms with the fact that their child won't get to the level they were hoping they would with all these interventions. It's still a difficult thing to process.

Hopefully there are better programs available and OP should certainly look into it. BUT to the extent the issue is behavioral I think taking a closer look at what is going on is important. A classroom observation or several to really understand what is going on could be helpful to reset. In my experience the tenor of the communication coming home from school created an impression of total dysfunction that was not really the case. Schools just tend to communicate in an escalated manner and don’t communicate the positives or overall picture.

OP here. I've had pretty good relationships with his classroom teachers and special educators. I've had some classroom visits, and if anything, the situation is worse than they say. Completely ignores most instructions or questions and wanders around the room frequently. With 1:1 attention, he might get half-way a worksheet/project, but with absolutely no regard to doing it correctly.

I've never before met anyone in my life who literally does not care what you say or think. Whether you're mad or happy toward him, he doesn't care at all. I wish I was exaggerating. Even rewards don't work on him.

Bottom line is you saying that his program is not working. What kinds of goals are on the IEP and how close do they get to him meeting those? Maybe the goals aren't even appropriate if there's a ton of learning issues that affect him and there aren't any goals addressing those issues. I was struck to by your statement that your goals are for him to be able to live independently. That's a long way off, when one of your frustrations is that he doesn't even seem to respond to whatever emotions you are expressing. Any professional classroom observations, functional behavioral assessment?

There are obviously more short-time goals and targets in his IEP and ABA plan. Most are around communication, participation, and emotional regulation.

After 5 years, we're still working on his very first goal- responding to his name being called. That's not to say he hasn't met any other goals, but demonstrates some of the challenges we've had.

The earlier comment was just the long-term goal for the intervenctions. I've accepted for a while that he's never going to go to college and have a family. I hoped he would be able to graduate from high school, but knew it was a long shot. But at this rate I don't see how he'd even be able to live in a group home.

[Anonymous]

How does he get through and even enjoy OT if he always ignores instructions and commands?

[Anonymous]

Anonymous wrote:How does he get through and even enjoy OT if he always ignores instructions and commands?

They follow his lead, basically. Same with speech. Have you ever seen therapy at the ~5-year-old level?

[Anonymous]

It’s hard for me to imagine effective OT and especially ST that follows a child’s lead the whole time. But my son has a different profile and I may not be aware of the full range of strategies. What does this look like?

My guess is that the therapists are either being directive but have built the relationship and tool box of tricks to support that—or that their lack of direction is the reason you aren’t seeing the progress you see. Third option is that your DS can simply accomplish much more one on one than in a chaotic classroom.

[Anonymous]

Anonymous wrote:HS SPED teacher here,

I want to be clear, I am sure you love your son and are trying really hard. I am also sure you are telling the truth as you see it, because when you are drowning in a situation, it's very hard to have a clear view. So, when I point out inconsistencies in what you're saying, it's not because I think you are lying or trolling. I just think that maybe, through questions, I can help you see the problem more clearly, and that seeing problems clearly is the first step to solving them. So, I hope you're able to see my questions in that spirit.

The one other thing that I will add is that it seems pretty clear to me, as an outsider who isn't impacted by the stress, is that there are skill deficits here. Seeing this as "of course he can hold a pencil correctly, but he's not motivated to." isn't helpful. More likely you have a child who doesn't have the skills to regulate, or to process new information while he's disregulated. So, while he can develop motor skills during a self selected and self directed activity like legos, he can't do the same thing in an adult directed task like writing. I think it's really telling that he managed to learn some pretty complex things (legos, potty training, reading, writing) when he was motivated and engaged by a task he selected and directed, but struggles to learn in a classroom where he isn't motivated, and doesn't have control over the tasks. That's not an easy profile to work with, but it's a very different profile from a globally delayed child.

++1 from the peanut gallery here - this is a kid that can learn stuff when HE wants to!

On a different note - OP are there any activities you do with your son that you both enjoy? Can you join him in watching his YouTube videos?

[Anonymous]

Anonymous wrote:It’s hard for me to imagine effective OT and especially ST that follows a child’s lead the whole time. But my son has a different profile and I may not be aware of the full range of strategies. What does this look like?

My guess is that the therapists are either being directive but have built the relationship and tool box of tricks to support that—or that their lack of direction is the reason you aren’t seeing the progress you see. Third option is that your DS can simply accomplish much more one on one than in a chaotic classroom.

It's not especially effective, no. We've gone through a fair number of therapists over the years, and it always starts the same way. They try to be more directive during the initial sessions, and then they give up. It shifts into more a model where he is playing and they try to join in with whatever he is doing.

[Anonymous]

I have a couple little ideas.

1) Have you tried fat pencils? These are good.

https://www.papermate.com/pencils/mechanical-pencils/paper-mate-handwriting-triangular-mechanical-pencil-set/SAP_2017483.html

2) A kid that writes elaborate search prompts may be able to be trained to use AI. I wonder if there are AI apps that return kid-appropriate easy reading summaries. Maybe in the future.

3) For training name recognition. I wonder if you could set up a device like a restaurant pager. On his desk. And the teacher could buzz it when she calls his name.