[Dealing with School Refusal]

He complains about stomach aches constantly when I am trying to get him to school. He definitely struggles with anxiety over all sorts of things, and the psychiatrist wanted to discuss going on Straterra ( not sure why he didn't do it at last appointment)  We were supposed to have the appointment a few weeks ago, but they cancelled and we are waiting to here about our new appointment time.  The person who normally handled some of these types of situations quit last year and they have not been able to find a replacement, so he is not getting that service. 

( He used to have a planned break to her room which was kind of like a Snoozelen room-- dark, a swing, strings of interesting lights, mats, lego.  ) But she is not there, so no go this year.  Last year's teacher also used the Spec Ed room on an informal basis several times a day to give him a break from the stress of the regular classroom.  I talked to the principal about him really benefiting from that break and have a meeting planned for Thursday with his teachers and will be pushing for that .  But other teacher had an aide for another student, and could leave her room to walk him down and sit with him there and this teacher does not. 

I like the idea of him not having to go to class first thing as that might be a lot more do-able for him.  Thank-you for the idea.

[Dealing with School Refusal]

32 minutes ago, PeterPan said:

Behavior is communication, and right now he's communicating (sounds like) that he's stressed and that it's not working. But unless that changes, I don't see how forcing him helps. I get that homeschooling was hard to. Unfortunately, I really get it. I can work hard with my ds, have him clipping along, then one thing and boom we're working on basics again. It's always back to basics, because his ability to cope and spring himself back isn't that great. So then the school or whoever is working with him has to be trained on those basics. The important thing is, they CAN be taught. 

Yes-- we think we have solved the problem, but it takes very little for another problem to come up. 

I was talking to the Mental Health services co-ordinator here about the situation and she said one reason his behaviour is escalating is because the adults are not listening.  In this case, it refers to Children's Services not us, as they are insisting he attend all day. He is literally begging us to homeschool him, and feels like his rights are being violated as we know other foster families who are homeschooling without any problems. He is wanting to organize a protest and feels that I should be standing up to his worker more.  He does not quite get that she has more authority than I do. 

I am super frustrated because he was not self-harming before they forced him back to school and now he is and has been making increasingly serious threats.  They basically came over the other day and had a talk with him and were attempting to "scare" him into going to school more consistently.  They are treating it as if he were "bad" rather than troubled.  I tried to go speak to the CAS supervisor yesterday but he was out of office.  

It is not technically a private school as Catholic schools are publicly funded in Ontario, but it is very small and does have far less resources than a typical public school would have. This is one reason why we are considering the other school.  One of the original reasons we were sending him to this school was that many of the kids he knows from church  were at this school and we thought that would make it easier socially for him.  It has certainly helped to some degree as I know several of them have stopped other kids from attempting to bully him.  I have no idea how quickly he would make friends at the new school.  

I don't know of any publicly funded autism schools in Ontario.  There are some speciality schools but mostly in Toronto or way farther south--- very far out of our area-- I don't know if we would be allowed to move that far away with him.  There is one I was looking into in Winnipeg which is only 5 hours away but then we would be out of province which I don't think is allowed- although possibly I could ask his birth family if they were okay with that.  I haven't found anything in Thunder Bay but if anyone knows of anything please let me know.  

I will look into the POPARD site-- usually education is a provincial responsibility and BC is very far away from us, but possibly they have a sister organization here? 

 

[Dealing with School Refusal]

Has anyone here dealt successfully with school refusal?  In other words, student has a great deal of trouble attending school. He is 12, has a lot of difficulties with school, is really noticing how far behind he is compared to other students, and multiple attempts to solve various different problems do not seem to work, as then the Apparent problem just switches to a different problem.  The over-riding issue is simply not wanting to be at school.

If you successfully overcame school refusal in your child, what was the most helpful resource? 

Any books or websites?

Helpful professionals? ( as in specifically- which branch was most helpful?  OT's?  therapists?) 

Specific routines?

School accommodations?

Some other thing I am not thinking of?

We have kind of reached crisis proportions here. He is resisting every day and it is taking us several hours to get him there.  Some days I cannot get him there at all.  Homeschooling is unfortunately not an option.  We already have rewards and consequences in place.  The school is aware of the issue and is trying to modify the programming--- although I suspect not enough.  I am still working on trying to access thorough evaluations to help us pinpoint academic issues.  He really hates his teacher this year, but has no specific complaints-- eg yelling, being mean, etc. I have met the man and he strikes me as okay, but probably a titch cold and sarcastic.  Definitely not a happy warm guy.  But we probably can't change that. 

We can't change classes as the teacher and his wife are both the grade 7 teachers this year, and are team teaching-- she handles Language Arts and History and Geography,  he handles Math and Science.  So switching classes won't really change anything.

We have thought about changing schools and have gone over and talked to the other school.  I am not 100% convinced that will really solve the problem.  

Any specific things you have tried that were really helpful?  Please no put-downs, we have worked hard on this issue and are honestly asking if anyone else has solved this problem?

[writing resources for reluctant 7th grade writer?]

9 hours ago, PeterPan said:

I don't know where your ds is, because I only know my ds. And Kbutton knows her ds, so she's giving you even more recs that fit her ds. And our two boys (Kbuttons and mine) are really at different places. My ds is support level 2 with a language disability, would not mainstream, and scripted heavily. Even though he seemed to have language, he benefited from going back through every single thing very tediously. It wasn't about one particular curriculum or another but knowing what I was working on: vocabulary then syntax, then narrative. But Kbutton's ds is way beyond that vocabulary level seemingly (for the most part, except for holes), seems to have mostly intact ability to understand and use expressively syntax, and jumps in more at the narrative level. So I don't know your kid. My advice would be to understand the sequence of language development and how those pieces build and decide for yourself where he needs to jump in.

Lol-- no, no, I know you can't tell me where my ds is at in his development.  I was just trying to make sure I understood which materials were easier compared to more complex.  

Thank-you both for all the ideas.  When my son was sick last week, we spent a bit of time on Google docs trying to finish up some of his assignments, and when I saw what he was handing in, I just felt so overwhelmed at how to help his writing come together.  But actually realizing it is more of an overall language issue is easier in some ways to get a handle on ( although it is a bigger problem) because the problem makes more sense to me now AND we can work more on oral language structures first.  

Okay I was going to write more, but impatient ds is here wanting me to put him to bed, I gotta go.  

[writing resources for reluctant 7th grade writer?]

Peterpan-- did you find Story Grammar Marker or the SKILL stuff more helpful?  Am I correct in thinking that SGM is maybe more the introductory level?  I am just trying to figure out exactly what my next step is, or the sequence of instruction.  

Possible sequence?:

- I already own the Loving Lit Interactive Grammar notebook- she does a bunch of stuff about very basic sentence structures and some color coding of sentence parts that might be helpful-   I am probably going to start here simply because I have it and it starts pretty easy and looks good for getting across sentence structure.  If this is easy, we can move on to the next level that kbutton mentioned about Writing Research Papers--- I am actually wondering if it could be done concurrently, as this is certainly the level his teachers are aiming for?  ( kbutton, when you said using this is what made it obvious he needed therapy level materials-- what materials did you go to?) 

-order Introductory level of Vicki Rothstein's Introductory Level of Vocabulary ?

-use the samples of  Sparc for Attributes and Sparc for Grammar and see if they are right level for working with DS ( the Sparc for Grammar looks like exactly the issue he is having-- showing you how to invert a question to get a statement/ answer) Some of the Attribute stuff looks very easy, but other parts-- like listing what different items have in common--- I am curious to see if he can do that kind of categorization.-

-after we work through this stuff, try the SGM stuff? Or should this be concurrently? 

Where does SKILL fit in with this? Do that after SGM?

Does this sequence make sense?

I am suddenly feeling overwhelmed and not sure where to start.  Considering the amount of time both I and the SLP spent last year working on writing a basic sentence using a capital, period and adding some adjectives,  I am assuming it won't be an easy fix ( seriously, we did work on this every week! for months!) 

[writing resources for reluctant 7th grade writer?]

1 minute ago, PeterPan said:

I spent a lot of time wanting SLPs and others to help me, and I kept looking for them, trying them. Finally I just had this moment where I realized I had to buckle down and do it myself, that they weren't going to help me. That's nice that one SLP in one state or one SLP in another has taken the time to specialize in this stuff. If we can't get to them or can't afford them and can't get help, we have to do it ourselves. It's NOT ROCKET SCIENCE and we CAN DO IT. 

Yes, I keep wanting to find these experts-- but they just don't' exist in my area.  I was afraid I was just being arrogant to think I knew better.  If the people who keep reassuring me that he tests okay were able to explain how that matches up with his real life difficulties i would accept their anaylsis more easily.

[writing resources for reluctant 7th grade writer?]

3 minutes ago, PeterPan said:

So, for instance, I'm focusing rabidly on syntax right now because I want my ds to be able to read a book for recreation. He only plays apps, and I want him to be able to read. I'm focusing on narration because I want him to be safe and be able to tell about his day. I don't give a rip about what the school says he should be doing per grade. Safety, recreation, ability to have a good, fulfilled life, that's what I'm looking at. The byproduct will be the school skills, but those are the real reasons I'm concerned.

And, fwiw, when you start realizing how it's showing up in LIFE, it makes the providers and evaluators perk up and pay attention to. When I walk in and I say my ds isn't SAFE because he can't tell what happened in a therapy session or on an outing, that's a BIG DEAL. Safety is a BIG DEAL. Think about the things he can't do and frame them in terms of living skills and safety so you can emphasize how iMPORTANT these things are. 

THIS------yes, exactly!!!!  This is the part I have trouble getting across. They don't quite see it because he can ramble on and on about his favourite topics like Pokeomon or Ninjago. But for example, last year, he was at some event, and he came up to me, upset and wanted to leave. After a lot of back and forth about how his tummy hurt, he finally said that his tummy hurt because one of the boys had hit him.  He was unable to describe him other than to say he had a yellow jacket on.  He could not point the child out in the room.  He did not know the kid's name and could not describe what he looked like.  No one else had seen it or could help us figure out who it was.  The only child I could see who had a jacket on  that was vaguely yellow, he insisted was NOT the right kid.  ( There were not that many kids in the building-- maybe 20-30, but it is possible someone had already left the event by the time he told me about it. Or maybe he just didn't recognize the kid out of context.) He could not ( or would not) tell me what had happened other than that he had gotten hit.  He kept claiming that he himself had started it, but could not tell me why he was saying this.  ( I was asking-- Did you call him names? No.  Did you hit him first?  No.  He kept saying no, no, no, but i started it. )  He was able to quote that the other boy had said something like "Don't start something with me. I am the wrong guy to mess with."  I talked to the adults in charge of the event, but since he had no idea who had done it and could not describe the person in any meaningful way, we could not follow up on it.  It was super frustrating.  Essentially, he could tell the big parts that had happened-- but not the sequence of events, or most of the details, or explain the cause and effect.  

But you don't notice this in casual conversation-- you only see it when you attempt to get him to describe an event in detail and in sequence. 

It's like there are 2 different tracks in his brain for talking.  I don't quite get it.

[writing resources for reluctant 7th grade writer?]

1 hour ago, NorthernBeth said:

There's actually a test for it btw, the SPELT (structured photographic expressive language test). It doesn't provide models, so kids who are good at imitation can't fake it out. It's only normed to about 11 because at that point basically all kids should be passing it, 100%. https://www.superduperinc.com/products/view.aspx?pid=tm509 

Okay, so I was just going back over his speech language reports to see if he had been given this test and he had. 

Here are the results

:Structured Photographic Expressive Language Test – Third Edition
 Standard Score  102  Percentile Rank   52nd Severity Rating  Within Average Range
*Child is outside the norming range for this test, so scores were calculated at the max age (9 years, 11 months)  ( DS was 11 years old and 8 months when this testing was done over several days by video conferencing.)  

She mentions in her cover letter that she was surprised he did so well.  

So when you say kids should be passing it 100%, do you mean all kids should be passing it ( which at 52% I guess he did?)

Or did you mean all kids should be getting 100% on this, which clearly he didn't AND he is about 2 years older than the maximum age suggested.

[writing resources for reluctant 7th grade writer?]

17 minutes ago, PeterPan said:

Have you ever wondered about ASD for him? It sounds like the pattern you're fitting, and it would pull all the pieces together. 

Yes. And last year's teacher thought so.  And my auntie who is a teacher and lived with us for about 5 weeks also mentioned it.  And the counsellor/ therapist we work with is convinced he has it but has not got the credentials to make an official diagnosis.

But no one "official" thinks so.  Not the pediatrician. Not the psychiatrist .   The counsellor referred us to a psychiatrist-- the only one in our area for about 5 hours and he said ( based on a short discussion with child)  that he thought ds was "quirky" but fun and interesting and not autistic.  He does not run the ADOS but thought "it might be interesting" to see how it went. It was a very frustrating conversation.  The one really useful thing he said was that medication can sometimes cause autism-like symptoms and approved us going off the Concerta.-- We did see a huge change in his personality.  More outgoing, more eye-contact, more laughter.  But he still has trouble processing language correctly and handling social situations well.    Psychiatrist's intern tried to suggest NVLD which would certainly fit many of the symptoms-- but that would assume verbal language is a strength which it really is not.  

We are on a waiting list for an psycho-educational assessment from someone from the nearest big town ( about 5 hours away).  I have no idea if they will run an ADOS if we request it or not, as this is a referral made by children's services who are trying to help us obtain services.  

[writing resources for reluctant 7th grade writer?]

kbutton, 

Are you meaning this store?

https://www.teacherspayteachers.com/Store/Lovin-Lit

or this store?

https://www.teacherspayteachers.com/Store/Im-Lovin-It

They both have stuff on writing, so I am just trying to make sure I grab the right thing.

oh- wait--- is this the item you were thinking of?  https://www.teacherspayteachers.com/Product/Writing-Interactive-Notebooks-Writing-Activities-Interactive-Writing-Notebook-878678  I actually own this, but haven't used it for a few years, and had forgotten about it!

 

[writing resources for reluctant 7th grade writer?]

16 hours ago, kbutton said:

I would kind of go ballistic that they are using the predictive software. It's just going to make things worse in the long run--create bad habits. I'd make that a hill to die on. 

The problem is that the only 2 schools that exist in my area both use this as their "go-to" solution for kids with writing problems.  They seem to feel any obejctions are just old-fashioned, and that this is the hip, modern way to do it.  If it worked, I would be fine with it, although I don't like it-- but with a kid who is a poor reader, it actually does not work, but they don't really want to acknowledge this.  If I could get him an EA, I could insist on someone scribing, but because in their minds, he has no disability, therefore he does not "deserve" an EA, even though they acknowledge that without help, he will essentially do nothing, or write gibberish quickly and consider it done.  

 

16 hours ago, kbutton said:

So, one on topic answer--a packet from the TpT store called I'm Lovin' Lit. She has some stuff on writing paragraphs and responding to prompts.

One answer that is therapy--Story Grammar Marker with extra work on the side for things that are difficult. That could be the extra autism books (not just for kids with autism--they break down the less obvious stuff). There is a whole thread on narrative development on the boards that has good information. 

Being unable to pare things down to important details or recognize organizational structure really hampers writing, and SGM works on that. 

Thank-you for these suggestions.  When I got to the end of your post and read, " unable to.... recognize organization structure" that just jumped out at me.  He often can't recognize organizational structures of any kind, OF COURSE, this would make writing hard.  I have been totally thinking of this as an isolated" I hate to write and spell", and suddenly reading you and  PeterPan, it becomes so obvious that it is really bigger than that which is why we have had so little success with it despite working on it so hard.  

[writing resources for reluctant 7th grade writer?]

16 hours ago, PeterPan said:

So the SLP acknowledges he had language issues but the SLP doesn't actually get WHY or what to do about it. And what is your ds' diagnosis? It's a language problem that is showing up in his writing, not a writing problem. My ds has ASD, and he memorized language, whole to parts, rather than parts to whole. So the parts of language didn't MEAN anything to him, so it didn't matter whether he had them or not. We had to go through all the elements of language to give them meaning, even though he was verbal. Yes, as I was thinking this over last night, I suddenly realized that it was not just an isolated writing problem as I have been thinking about it, on the ;basis that his casual speech sounds fine.  It is that in that extremely structured question answer format, he does not quite get the structure.  I need to back up and work on the speech.  I totally don't get why the SLP is not seeing these things---maybe because he can talk up a storm on a topic that interests him, so they attribute any issues as "lack of interest= lack of attention= ADHD thing". 

His diagnosis are multiple but all in categories that the school doesn't "count" as diagnosis--- he has Borderline Intellecutal Disability= Slow Learner which does not get support in our system.  He has a diagnosis of ADHD which I would consider a behavioural diagnosis but which is not counted educationally in our province ( 1 of the 3 provinces which do not recognize ADHD as a diability)  He has sensory processing issues which also don't count as a disability ( althougth they do provide some accomodation.)  He also is diagnosed as having mild receptive language processing issues, but moderate expressive language processing issues. But this was diagnoses privately-- although they have the report.  This SHOULD be recognized and counted.  As I write this I realize I may need to try to get the SLP who did that diagnosis call or write a letter to the school emphasizing that he really needs support.  So to my mind, he has multiple diagnosis-- but to our school system, they are saying he has nothing.  

There's actually a test for it btw, the SPELT (structured photographic expressive language test). It doesn't provide models, so kids who are good at imitation can't fake it out. It's only normed to about 11 because at that point basically all kids should be passing it, 100%. https://www.superduperinc.com/products/view.aspx?pid=tm509 

I will talk to the private SLP and see if she has it and can run it.

So yeah, we've gone through a bunch of SLPs already. They don't enjoy syntax, know squat about developing language seemingly, and they don't get it done. Maybe some kids, some cases, but not this harder stuff, not with a situation like ours. I've got a whole thread going (narration) where I've been talking about stuff we're doing. If you want to get seemingly nitpicky, you actually end up backing up to feature/function/class, which is stuff they skip in kids who don't get ABA, because they figure they don't need it.

Yes, this--- I get super glib answers and people basically saying we prefer to work with younger kids, we have more success with younger kids, and yes I get that, but you can't just write him off because he is 12. He can still learn, he just does it slowly.

The SLPs will call it categories, attributes, etc. http://www.linguisystems.com/products/product/display?itemid=10323  Look at this series. I had my ds read EVERYTHING ON THE PAGE aloud, and anywhere he could be compelled he had to answer in complete sentences. So if it would allow for yes/no, sorry we made complete sentences.

Attributes are adjectives. Functions are verbs. Categories help them understand nouns. So backing WAY UP let him rebuild the reason the syntax was glitched. It doesn't take that long to remediate in the scheme of things. I really went overkill, and I think we spent 2-3 hours a day and in maybe 6-9 weeks got through the bulk of it. Then we were ready to start grammar and syntax. So that foundational stuff (attributes, categories, etc.) is called "vocabulary" in the SLP world. You can say well his vocabulary is fine, but it's how the language is organized and processed. Then you work on "syntax" which is how those words relate together to form sentences. If you go in that order, you're building the foundation. And if he can do all that (using attributes and categories, etc.) in complete sentences, then fine. I used a book 100% Vocabulary: Primary: Vicki Rothstein: 9780760601853: Amazon ...https://www.amazon.com/100-Vocabulary-Primary-Vicki-Rothstein/dp/0760601852 that was utterly brilliant. I have the secondary level also and if you think that the primary level of these skills is too easy, sure run him thrugh the secondary book instead. That would let you screen quickly and find the holes.

Awesome, I will get this-- i had actually just ordered the book you mentioned down below, but I can get the introductory level first if that is needed. 

So yes, the syntax and vocabulary issues will hold back his reading just as much as the decoding. There's also a really good series by a different Rothstein Power Books: Syntax Ages 8-11 – Rothstein Speech Pathologyrothsteinspeech.com › Power Books: Syntax Ages 8-11 that I'm just starting with my ds and like a lot. It's not the be all end all, but it's something. But DON'T start there. If there's a significant language disability, start by making sure he recognizes words as words, which is that "vocabulary" level. Then, when the skills for vocabulary are solid, then you proceed to syntax.

 

[writing resources for reluctant 7th grade writer?]

1 hour ago, Storygirl said:

For answering questions in writing, DS's intervention specialist at school taught him to always start his sentence by rephrasing the question. So if the the question says, "Why do the leaves on the trees turn colors in the fall," DS was taught to write, "The leaves on the trees turn colors in the fall because...." They practiced this until he could do it independently and consistently. IT doesn't make for stellar writing, but it gets the information across.

For other kinds of composition, I wonder if teaching him to use key words would help, as in the IEW writing program. 

Yes, I was eyeballing the IEW program and wondering whether that would work for him.  He seems to struggle with the "rephrase the question thing", as we have worked on it too.  We honestly spent ALL of last year working on writing a complete sentence with a period and capital letter with his speech-language pathologist.  

[writing resources for reluctant 7th grade writer?]

We are having a few problems with our grade 7 year in public school, and I am just wondering what writing resources you have used that worked for you. 

I just had a meeting with ds grade 7 teacher and she mentioned something I have noticed before and we have worked on a LOT but still seems to plague him.  In his writing, he usually answers a question with just the predicate part of  a sentence and leaves off the subject.  He will sometimes add a subject with prompting, but sometimes can't think of the subject.  If you just asked him to make up a sentence on his own ( unrelated to any question or topic), he would use a subject.  But despite a lot of prompting and discussion on this topic, he just either doesn't get it or doesn't do it consistently. If you wanted him to just make up a sentence on his own it would usually include a subject, but not when responding to a question on a topic he just read about.

His writing also comes off very strangely as they encourage him to rely onthe computer's predictive software for writing. However, as he is not a great reader, he will often just choose whatever word the computer offers, and not realize it is not the word he wants and does not make a lot of sense. This sometimes results in sentences that appear like gibberish. Then he goes back and it doesn't make any sense to him so he just starts writing all over again. Or adds-on new sentences without fixing the original writing. I requested that they try using a text to speech program instead, but as he has speech difficulties, this can also result in gibberish. I know we tried to use Dragon Speaking Naturally at home and could not really get it to work properly.  The teacher said she would look into it.  

He has a lot of difficulty writing a summary paragraph on what he reads ( although in my opinion, what they have him reading is way too high--- they think that simply having the text to speech reader reading it to him compensates for that issue but it really doesn't. )  His sentences appear somewhat unconnected to each other or seem to change topic in the middle of the sentence and he doesn't seem to notice it.  The lack of concrete nouns and overreliance on the pronoun "it" just makes this lack of coherence worse.

I don't have a lot of faith that his teacher is going to do anything to really help with this situation.  Simply reminding him to "write in a complete sentence" as his teacher did during the meeting is not going to be successful .  I think we are going to have to supplement at home to make some progress in this area. 

Ds is in grade 7.  He is a poor reader-- about grade3 level, but an even worse speller.  This makes writing pure torture for him. He is borderline intellectually delayed and has limited interests- pokemon, ninjago, cats, and other animals.  He can talk your ear off on a topic that interests him, but it can be like pulling teeth to get any commentary on a topic he does not find interesting ( which would certainly include most school subjects). In his speech, he over-relies on pronouns,  has trouble with sequencing, and can have difficulty with conveying the main idea of a topic. These issues definitely carry over into his writing.  

So what have you used that involves writing that is responding to a topic ( rather than self-generated) and systematically shows a student how to build a one sentence answer or short paragraph answer?  If it also was interesting and did not result in screaming or tears at the thought of using it, that would be an added bonus.  

[Math taught Brave Writer Style]

Depending on how comfortable you are, you might look into the concept of guided math.  It is intended for classrooms really, but it has that concept of doing math in different ways.  For instance, you might set Monday as your traditional math lesson day.  Tuesday do some board or card games that reinforce the concept.  Wednesday work on word problems or read books that combine the math concepts with language.   Thursday could be some sort of hands-on component-- like tieing it into real -life activities  or other curriculum ( cooking, art, science, music, shopping, decorating, etc.) Or Thursday and Friday could be project-based--- like design a pet shop to use perimeter, area, and possibly money, multiplication to buy the materials.  

This kind of thing can be a LOT of work though-- maybe you start with just one day being a game day,  and then slowly add things in as you gather some materials.  

I agree with others that RightStart is really trying to do this, although at your son's age, he is almost out of their range of materials.  

 

[I guess we are still in denial???]

Yes!    Man, have we ever had those excursions!   The thing about holding it together while people are around-- but losing it once they are gone is,  I think what caused us so many problems at school.  He can fake it for awhile-- but not forever!  We are still working on learning how to advocate for what he needs in the moment, rather than after-the-fact to me five hours after whatever bothered him at school.    I also find this is really hard to explain to friends who want to invite us along to "fun" events, that I know he won't find that fun .   

And the combination of sensory issues plus anxiety????   Ahhhhhhh--- kills us all the time.   I dont' even notice whatever little thing is bugging him, and he is meanwhile being driven crazy by it and not saying anything in his efforts to be good or appear normal-- and then completely loses it when he can't take anymore.  

[I guess we are still in denial???]

Thank- you Moved On.  Yeah, we actually moved because we were told we would be able to access better services off reserve.  It hasn't really happened the way it sounded like it would.  I seem to be doing a lot more of it myself than what the professionals implied. It has been very hard to access services here.  Very eye-opening and discouraging at the same time.  It is not even really a money issue-- just not enough people doing the job, so you just go on these crazy long wait lists.    Thank-you for the specific suggestions of books that helped.  Sometimes I am just reading like crazy trying to figure out what will actually work.  

[I guess we are still in denial???]

You know, I think I have one of her books from when we were tackling some other issues. I will have to dig it up again.  I hadn't realized at the time the difference the point of view might make.   That kind of helps in general when dealing with him, too, possibly.  

 

[Autism's Drug Problem (Scientific American)]

So interesting all of this.  We also had a psychologist say there was no way my son would be capable of CBT.  He more or less said due to his supposed  low IQ there would be no point.  ( Note:  my son is perfectly capable of having discussions on all sorts of things that interest him. He can self-reflect when it suits him to.  He is not incapble of thought or something.)   He literally would barely talk to my son and only wanted to talk to me ABOUT him, rather than talk directly TO him.  He actually told me to make sure to find a babysitter for my son or not to bother coming for the appointment.  I finally had to speak to children's services about the doctor and they were able to find a less qualified but far more capable therapist who was willing to work directly WITH my son.  I don't think she does JUST straight CBT-- she is very much a proponent of using whatever works.  But she is wonderful with him.  

I always thought the other guy was just being difficult.  I didn't realize it was a  "thing".  

[I guess we are still in denial???]

1 hour ago, Moved On said:

wanted to add here that we go to places that are of interest to my 9 year old and we prepare him on the challenges that we may face. We talk about it, watch videos (people upload tons of stuff on YouTube), envision how the day will go, decide what to take with us, and how to deal with unexpected challenges.

Just because your son had that reaction it does not mean he did not want to go. It may just mean that his sensory issues may be more heightened at this age (he is entering puberty). Sensory issues can vary at different ages and for different people. Talking to him is the best way to figure out how he felt and how to go about approaching different situations like this in the future.

I wish you all the best,

Yes, I am begining to realize this may be the level of prep we may need.  Is it horrible to admit this is a litlle overwhelming to me?  I have been doing this for "hard" things like going back to school, but didn't think of it for something "fun".  ( Although truthfully we seem to be going through a period where nothing seems to be fun or interesting to him.  Not sure if this is puberty or social anxiety.)   

Do you plan these things out in a journal or planner , or just keep it all in your head??  I am trying to think about how to be more organized about this so we have less surprises.   He really has a lot of trouble anticipating / or communicating what he finds hard.  I do a lot of guessing.  He often gets very agitated when I try to discuss it with him.

  I didn't realize puberty might affect sensory issues!   

Thank-you to everybody who has been contributing ideas.  I keep thinking the professionals are going to help us figure things out more,  and I guess just tell me what to do, what will be best.  

I guess maybe it is not that cut and dried, eh?

[I guess we are still in denial???]

1 hour ago, caedmyn said:

I have no personal experience with this as my sensory seeker doesn't mind noise, in fact tends to be revved up by lots of noise and activity...but is there any way he could wear earplugs or noise cancelling headphones (maybe there's a low profile version?) to something like that if he does want to go but is overwhelmed by the noise?

yeah we were trying to encourage that, but he refused.  we have been wondering about maybe getting a little mp3 player so he could listen to some music to counteract??? But not sure if that will work.  He does wear them for assemblies at school apparently.  

[I guess we are still in denial???]

36 minutes ago, happysmileylady said:

Here's the thing.  Every kid is different.  Even those with diagnosis.  A poster above me has a quote in her siggie that says "a child may have a disorder or set of problems but he is not he disorder."  

Regardless of a kid's diagnosis, every kid and situation is different.

 

My DD7 has an ASD diagosis.  "Too Loud" doesn't exist in her vocabulary.  Loud sounds, bright lights, lots of colors, she would have THRIVED in the environment you descibe.

 

So much so that she might have wandered off to explore all of that.  And that's OUR challenge.  Making there is an eyeball on her at all times.  She has no safety awareness.  She knows no strangers.   And yet, she can't really be understood either  "Hey, how did you do that pretty colors for that clothes there?"  But, an arena full of drum beats and beautiful colorful costumes....she would have LIT UP.  Has lit up.  

 

It's not about denial of issues......it's about dealing with the issues you have..............................and not dealing with the issues you don't have.  

Yeah this is more what he was like about 4 -5 years ago, which is maybe why I keep getting caught by surprise.  Although he would often melt down after big events even then, so maybe it was still stressful but kind of compelling?  At the recommendation of our speech pathologist, we are also getting his hearing tested as he seems to mention noise issues so much lately and we are seeing a lot of "mis-hearings"  or confusion over similar sounding words.  We had him tested when he was around 4 and they said he was right on the borderline for hearing consonants correctly.  But he has had a LOT of ear infections over the years.  We are wondering if maybe he has some fluid in there that is making it a bit tricky to hear clearly-- and might make hearing a lot of noise at once ( like in a busy school auditorium) almost unbearable.  So maybe we will find some useful information there.

I feel like I keep "forgetting" the difficulties.  Or he has a great day or a great conversation with me or problem-solves something, and I think "phew..... we are going to be okay , he is learning how to deal with this...."  And then he falls apart again over something small, and I realize it is just not that easy.  Maybe that is why I want a diagnosis?   So it is finally "real" to me, and not just .......... Him having another bad day "out of nowhere"  when REALLY,  ...... I should have predicted it.... I should have seen it coming!!!!!

[I guess we are still in denial???]

Thank-you for listening.  It was one of those weird moments where I just seemed to "forget"  all the issues we have.I keep thinking--- he used to be so happy   - he used to love events.  But today I stopped and was really thinking it through-- okay-- did he actually like the "event"  -- or just the chance to run around with lots of other kids and eat some food?Becuase really maybe I was enjoying the event and he was just enjoying running. 

     

4 hours ago, PeterPan said:

Reality is, if the event is important to ME, then I need someone assigned to him who can meet his needs and even help him leave if that's the best strategy. It sounds like this event was more important to you, so it was an emotional loss for you too not to get to stay and not to have those plans. It's ok to grieve that, and it sucks.

Yeah- apparently it was definitely more important to me!!  I just don't want him to grow up and  be like.... "man I missed out on learning about my culture because I lived with non-natives" .  I do miss doing events-- seeing other people with their families and how excited their kids are...... I wish we had that. 

I don't think we offended anyone or him.   He just hated the drums ( which were huge!  and constantly beating), and nothing else was interesting enough to him. to try to overcome the sound issues.  He is often more or less uninterested in a lot of things.  

I keep thinking we will be fine because I mention it to him and he acts like we are fine and then we get to whatever activity and he is suddenly flipping out.  I think I need to develop some sort of routine pre-debriefing, but I am not sure what. Moved On,  I will check out those books you mentioned, and see if they will help me. 

On the up side, today when he mentioned he was scared to go to school because he thought it would be noisy, I was able to go in, talk to the school staff, get a rough schedule of events and discuss his concerns and they suggested a couple of different options to reduce noise levels.  He initially said he still wouldn't go , but after about half an hour of completely ignoring the topic and just letting him play, he suddenly announced that it was time to go to school!   And off he went just fine.  

4 hours ago, PeterPan said:

It might sound trite, but it was a really big deal to me when I finally had a psych say yes, let's bump him to ASD2, that his support level is *2*, meaning he requires substantial support. Those numbers are NOT severity level, and it's a really common misunderstanding. They're support levels. That support level explains why I struggle to take my ds with disabilities AND another person with disabilities places at the same time. In just one of those odd things in life, I have multiple people in my life (adults) who also have support needs that I like to do things with. But when my ds is along, I need one person assigned to the adult with disabilities and one person assigned to ds, end of discussion. And that person assigned to him has to be all the way there, totally planning on meeting his needs. My dh is, um, well he's not very perceptive all the time on needs and how to solve them. He's not with ds as much, so when they're doing preferred things and things are fine they're fine. But if ds has support needs (he's going to melt down, he needs a break, he needs food, he needs help self-advocating, he's frustrated, he's in pain, he's whatever), not everyone is oh yeah gonna figure that out. So I have to plan things out and have plans for who he's with, who's meeting his needs. If everything is going swimmingly, it might be fine. But one glitch and that support hole will be obvious.

Yes, this.  Doctors keep going " why are you pursuing this... he is too old for services....."  But first-- he is not too old to get extra services at school, and second, because it seems like it is becoming MORE of a problem, not less of one.  And I am tired of feeling like I am seeing things.  And if you give me a diagnosis-- I will go to town on that thing, I will read and study and research and then maybe I have a chance to figure out how to help him with the stuff that drags him down and ruins a perfectly good day.  School has been insanely stressful and caused a bunch of self-harm-y behaviours and then a couple of weeks ago we were afraid his birth mom might die and that was horribly stressful and triggered off a few meltdowns.  ( although , it loooks like she is getting better thankfully)  

I finally have an appointment next week to see the psych. who said he will do the ADOS.  I have no idea if he will pass or fail.  I feel pretty anxious about it all. ( or really terrified!!!)    He can sometimes keep it together really well.  Like, on a really good day, people would wonder what on earth I was worrying about! When he is trying to be polite, he has this lovely formal "polite" voice and manner,  he uses which adults seem to adore.   In which case, they might be like-- oh yeah he is fine!!        ( Although he hates doctors so much, they often see his worst behaviour.)   The pediatrician that visits from about 5 hours away finally agreed to see us more often while we try to get the meds straightened out, so that is a huge relief because the emergency room didn't want to touch it and the doctors at the only practice in town originally didn't want to touch it either!   Grrrrrr!!!!!

  Today is finally the last day of school for the year, so hopefully that stress will calm down.  Just reading over the report card, is kind of bittersweet.  For example, his teacher wrote:   "   ( DS..... struggles to enter into conversations he is interested in.  He will linger by or listen intently but is unsure how to engage.  He is unaware of how people react when interested or not interested by their body language....:)   uhm.... yeah that sounds like my guy......but at least he is trying!!!! 

5 hours ago, PeterPan said:

I think it's really about a relationship of integrity. Their elephant memories make it hard if you don't keep that relationship right, and it's a little bit unexpected to have that collaborative, problem solving relationship. Most people view parenting as control, but with these kids sometimes collaboration and just being honest and apologetic goes a long way. You can do it.

Yes, exactly--- he can remember every mistake I ever made and can hold a grudge like no one's business.  People often think I am being "easy" on him.  I try not to spoil him.... but he is not a kid you can run over roughshod.... he HAS to have some measure of control or he absolutely can not handle it.  

[I guess we are still in denial???]

So it was National Aboriginal Day in Canada yesterday.  I was all excited to talk our 11 year old ( who is First Nations) to see the festivities in a nearby town  that had more going on than our little place.  It was about 90 minutes away.   I had visions of how much fun this was going to be-- seeing the outfits, hearing the music, watching the dances, looking at the crafts, etc.   The drum beats were starting up and some beautiful women in festive costumes were just entering the middle of the room.   I strode confidently in the arena,  and then turned my head to talk to family.  And they weren't there..........

Scanned the room anxiously and discovered my son wedged up against a pole, gripping my husband's hand tightly, face screwed up in tears.  My great big husky 11 year old who looks more like a 13 year old.     I ran over to them and he was saying,  " Too loud!  Too loud!"  We hustled him out of there, went to a nearby store and let him walk around calming down, and bought some earphones. After about 90 minutes,   we tried again.  It was quieter. This time he made it about 5 minutes, while squeezing my hand with all his might.  Then we left cause that was all he could take.  And drove 90 minutes back home again. 

What on earth was I thinking?????  It is like I can't quite seem to make myself believe how hard he finds stuff.  I feel like such an idiot.  

When do i finally get it??? 

[Autism's Drug Problem (Scientific American)]

Thanks, we are facing this exact problem right now.  It is nice to know I am not the only one wondering about whether these drugs are safe and effective.  At least it gives me a starting point to discuss with medical professionals.  All the meds in the world aren't going to help if ADHD is really autism.  Sigh.