HS SPED again,
You say he isn't motivated by anything but are there things that motivate him to do things that aren't adult directed? For example, is he motivated by food to stay at the dinner table long enough to finish something he likes? Or to climb on the cabinets and get something stored out of reach? Is he motivated to go outside enough to put on his shoes? To figure out how to unlock a lock you don't want him to? Is he motivated enough by screentime to try to get past a password? When he walks away from homework, or from you at home, is there something he's walking to? Like legos, or kicking a soccer ball? |
Lol OK. Hopefully you won’t actually get near any of our kids because you sound like a disaster. |
I'm surprised no one has mentioned Pathological Demand Avoidance - PDA. It's part of the autism profile for many Autistics and is vastly misunderstood. I'm a mom of an Autistic girl who has this.
(From Google) "Demand avoidance in the context of autism refers to Pathological Demand Avoidance (PDA), a profile where an individual experiences intense anxiety and a need for control, leading to an extreme resistance to everyday demands. It is not about defiance, but a stress response triggered by a perceived threat to autonomy, manifesting as avoidance behaviors like excuses, meltdowns, or withdrawal. Management strategies involve reducing pressure, offering choices, using playful approaches, and creating a predictable routine to support individuals with PDA. It is crucial to understand that PDA is not about being difficult or disobedient; it's a deep-seated anxiety response." OP, does this sound remotely possible that your son has this profile? |
This is super insightful. A bit of a koan but makes a lot of sense. I think what it says on a practical level is that we need to observe our kids and see when they are regulated and productive, and figure out what setting that is. But the system is set up to focus on fixing dysregulation instead of enhancing regulation. |
Hmm. None of those are educators or advocates with knowledge of MCPS. I think it is worth reaching out to someone who knows MCPS and was a former educator. I realize that adding another professional is the last thing you want, but it really seems like drilling down on the programs available (or a private placement) is the next step. |
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. |
That's challenging to answer because he doesn't cooperate or follow tasks. That is, we can tell he can read based on on his unprompted utterances, and his ability to type and spell, but he won't read on command or answer questions. So that also makes it difficult to gauge how much he understands. He can do basic math worksheets, or at least parts of them. He won't show his work, and isn't good about using wherever technique they're working on, but he gets the right answer when he does it. We can kind of do basic writing worksheets, but when they ask for a sentence he'll usually just write or a word or two. He's capable of speaking and typing longer sentences when he's playing on his own, but doesn't do it in school. The problem happens even with play-base therapy. He knows his letters, but his writing skills are poor. He doesn't use a pincer grip, despite years of working on it. It doesn't appear to be a physical limitation, though, as he plays with legos requiring a similar level of fine motor skills. He just doesn't want to, and because he doesn't want to, it is hard to get him to practice it. So he really doing grade level work? Certainly not. He doesn't have different educational outcomes yet, nor does the IEP formally modify his work. We just all try to get him to do as much of the regular work as we can. I think that's going to be much harder this year. But the thought has been that we wouldn't really get into more in-depth discussions about going off the diploma track or formally modifying his work until he goes into 3rd grade. For a lot of reasons- curriculum, testing, and neuro assessments they don't do until age 8 (which he just hit). He doesn't have an assigned 1:1 this year or last, but between elopement and SIBs, they bring another person into the room and keep someone on him for as much of the day as they can. Otherwise I know it is too much for the teacher and one paraeducator. |
S/o HS SPED teacher - would be great if you would do an AMA! I have so many questions about my kid headed to HS. |
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. |
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HS SPED again, What kind of play contexts is he speaking and writing longer things in? Is it play that he initiates or play that someone else initiates? What kind of activities? Also, did he start 2nd or 3rd this year? Do you see the elopement and SIB's in all settings or just in specific settings? Has there been an FBA? |
He's not externally motivated, but he can be internally motivated. He wants to be very independent, which can have its advantages. We thought, for instance, that he would be a disaster to potty train, but I think he likes some of the independence/control that gave him. He also basically taught himself to read and type. I'm pretty sure he was motivated by being able to search for youtube videos. He writes very long and detailed search queries, usually about animals. He likes different things. If there's a tablet available, he'll often be attracted to it first. But if not, then legos, animals, or magnatiles are popular choices. He's pretty good at playing with whatever is available, even if they're not toys (which is challenging when we go to other people's houses- all decorations are toys to him). That has also made rewards challenging with ABA- he doesn't find any specific thing very rewarding. Things like food or toys don't work. The promise of free time/breaks are the only things that really work. |
Oh totally. I didn’t mean to say those therapies are not good in many circumstances. At a minimum because they are 1:1. |
His own play. He doesn't participate when someone else initiates. That's been a goal for years now... Longer writing comes up in youtube searches- he comes up with very detailed scenarios, sometimes clearly trying to find a specific video. His searches are far more detailed than anything he'd say verbally. He's in 2nd. Elopement and SIBs happen everywhere. He doesn't have a BIP. I've brought it up, mostly thinking it could help make the case for a para. I'm not sure why they haven't done one. But practically speaking, based on my discussions with his teachers and special educators over the years, they're trying to do the right things. So I don't think it would be useful except for using as justification for a paraeducator. |
HS SPED teacher here. I am sure you are right that his teachers, both special ed and general ed care about him and are trying their best, just as you love and care about him and are trying your best. But sometimes when you are knee deep in a situation, it can be very hard to see the patterns, and so having someone from the outside come in, take data, and draw conclusions, can be very helpful. If you have an attorney, or an advocate, or the means to get one, i would encourage you to use them to help you get an FBA done by someone other than his special educator, and a dedicated paraeducator. SiB's and elopement mean that he is currently not safe. That doesn't mean that I think that an FBA and a paraeducator will necessarily turn the classroom into the right placement for him. They might lead to dramatic improvement at school, but even if they don't they should increase his safety, and yield information that will help you look for the next placement. |