When do you share an ASD diagnosis, if they can usually pass for NT?

[Guest]

I'm having trouble seeing how those two things vary as to explicitness. One is negative, the other is positive. Usually when I'm sharply saying "stop!" it's because I have exhausted every such variation of how I might explain the request and it's still being ignored, not because she doesn't understand what I want but because she doesn't get that I really want her to do it and am not just talking for the sake of talking.

"No" and "stop" is not explicit. I let him know what he is expected to do. Each situation is different. No one is saying just say this and problem solved! There's redirecting, there's showing cause and effect, there's creating social stories to practice a skill/ scenario... it depends on the situation. Repetition and patience is key. And, no, I'm not saying I am perfect, but I do work on my own mindfulness during difficult times to teach him by example. There's no one size fits all for every child or even every scenario. We each choose what works best for us and our child.

[winterbaby]

"No" and "stop" is not explicit. I let him know what he is expected to do. Each situation is different. No one is saying just say this and problem solved! There's redirecting, there's showing cause and effect, there's creating social stories to practice a skill/ scenario... it depends on the situation. Repetition and patience is key. And, no, I'm not saying I am perfect, but I do work on my own mindfulness during difficult times to teach him by example. There's no one size fits all for every child or even every scenario. We each choose what works best for us and our child.

 

"No!" is explicit to the fact that I actually mean what I've already stated  every which way and now it really has to happen, which is the stumbling block for my kid. I'm responding to the unfair stereotypical image that quote presents of parents unempathetically "screaming" flat commands.

[kbutton]

I'm having trouble seeing how those two things vary as to explicitness. One is negative, the other is positive. Usually when I'm sharply saying "stop!" it's because I have exhausted every such variation of how I might explain the request and it's still being ignored, not because she doesn't understand what I want but because she doesn't get that I really want her to do it and am not just talking for the sake of talking.

 

My son was like this, and still sometimes is. When he was little (prior to diagnosis), he really wouldn't follow directions that made no sense to him. Teachable moments were just me airing my opinion. And trying to get past the nuances of that sort of thing with a gifted 2 year old who knows a lot but won't tell you anything he's thinking in words? It's like nailing jello to a tree.

 

For some safety situations where he simply refused to acknowledge our "logic," No would have been a luxury. The flying tackle was ultimately more useful.  :lol: I think if we'd had a diagnosis and someone to guide us a la ABA, it would've been different, but we were stuck with logic, and when it wasn't acceptable to him, basically acting as a lifeguard with no whistle power was our main strategy. I mean, what exactly do you do with a kid who doesn't understand a single word that conveys danger when he also doesn't accept No (and other words like it) as valid? You run across the room and save him from himself. I got really good at it.

 

He understood exactly what electrical cords were used for, and once he knew that, those little plastic safety plugs were nonsensical to him. His solution was to find a butter knife and pry them out of the wall--he understood that things with cords could be turned on and off when the cord was plugged in, and those stupid plastic things didn't do anything, so they didn't belong. He also didn't understand that he could get shocked from the outlet, and we had no way to demonstrate that. He finally learned the word "hot" could mean that he'd get hurt, so we used that. But then, it wasn't really actually hot in the literal sense when he put his hand near it, so we were back to being stupid again according to his logic. (I think he truly thought we were utterly stupid.) Enter the flying tackle. 

 

My son really liked teachable moments after the fact, but if it bumped up against his iron clad logic, then it was moot. There was no teachable moment to be had. 

 

Thankfully, he survived, and he finally understood what we were getting at when he had a younger brother. He realized we were actually trying to protect him, and he finally understood that adults know more than kids because he realized he had once been little and learned new things. Until then, he truly had thought we were always trying to yank his chain unfairly!!! 

 

Crimson Wife's point about the phrasing is also a really big issue at times. Two things can mean the same thing, but one may be incomprehensible to my child while the opposite phrase works best for another child.

[Crimson Wife]

For my boy it depends on the situation, and yes, this often describes him as well. Negation is viewed as naughty by some, but I think we sometimes forget that they are still little kids. Even younger maturity wise. Working with them often has better results than going against that. At least in my books :)

 

I was unclear here. I meant that my DD has difficulty with the language concept that is termed "negation". As in the language literally contains the word "not" or the contraction n't. It could be a desired/positive thing ("she didn't lose the race") but from a syntax perspective, the wording contains negation. :)

 

Edited to fix typo

Edited June 2, 2017 by Crimson Wife

[Guest]

"No!" is explicit to the fact that I actually mean what I've already stated every which way and now it really has to happen, which is the stumbling block for my kid. I'm responding to the unfair stereotypical image that quote presents of parents unempathetically "screaming" flat commands.

Winterbaby, I believe you may be reading into it more than what is there. Dr. Grandin is not a mom. She tries to share her experience through the eyes of her mom. She is not trying to offend or create stereotypes. I own and have read many of her books. I always keep in mind the perspective she comes from.

[Guest]

I was unclear here. I meant that my DD has difficulty with the language concept that is termed "negation". As in the language literally contains the word "not" or the contraction n't. It could be a desired/positive thing ("she didn't lose the race") but from a syntax perspective, the wording contains negation. :)

OK, I get it now. :)

 

I don't think you were unclear. It's most likely along the lines of, I misunderstood ;) 

Edited August 17, 2017 by Guest

[Guest]

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Edited August 13, 2017 by Guest

[Guest]

Example, he likes removing his yoke from a fried egg. I do not have a problem with that. Using his hands to do that vs. his knife and fork, I have an issue with! So instead of saying "no touching the food with your hands" you say "use your fork". You have now given the child an explicit instruction. That is what she means.

Winterbaby, rereading my posts I see I should have used the word "clear" instruction over "explicit" instruction. That was what I meant. Use too many words with a child with language delay (at the early stages especially) and the child can get lost in the words. This is the point Temple Grandin is trying to make in regards to clarity. That is what I have found from reading her books.

Edited August 17, 2017 by Guest

[Guest]

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Edited August 17, 2017 by Guest

[AimeeM]

It is COMPLETELY out of the Scope of Practice for an Occupational Therapist to be working on speech and language issues, just as it would be out of the Scope of Practice for a SLP to be working on fine motor skills.

 

It gets crunchier with fields where the Scope of Practice overlaps, such as SLP vs. ABA or OT vs. ABA. But SLP vs. OT should be clear-cut and I would RUN from any clinic that has SLP's doing OT or OT's doing speech therapy.

 

Well, their exact wording was along the lines of them feeling that his receptive language skills' delay may fall under the scope of both SLP and OT and they needed scheduling that would allow both (OT and SLP) to work together to address his language skills and his OT needs. I don't know. It was really confusing.

 

At the moment, my choices of clinics is very narrow. Like, there's one. I really, really need for the boys to receive in-home speech and OT, because between the two boys the sheer number of services needed, and the hours of services they need weekly, combined with middle ds' "other medical" needs (and additional services he needs, like PT), in-clinic would be almost impossible. There is only one clinic here that offers in-home for OT and ST in-home after the age of 5. There are many clinics that offer in-clinic, and with my insurance I have my pick of them all -- but there is only one that offers it in-home. The clinic that offers the in-home I need is not the one that made the comment regarding OT vs. ST for the language delays; that was an in-clinic I'm considering using... if I had 30 hours to a day and 10 days to a week, I mean, lol. The clinic that offers in-home has such a waitlist I haven't even been able to score an evaluation for services yet with them. Every single clinic appears to need their own eval done in-house.

[AimeeM]

This is awful, Aimee! I'm so sorry! If you saw the two books I listed in your thread, check out previews on Amazon for the *Visual Strategies for Improving Communication*. It is very inexpensive on Kindle. You might find it useful until this situation is resolved. It is actually giving me some ideas that I can adapt for my 8 yr old, even though we are past most of it at this stage. I always tweak everything I use anyway :) which is why I say, I read resources and then add what I think will work for each of my boys to my own approach. Keep in mind, my kids have only ever had what I have provided, up to now. And we have made lots of progress. My 8 yr old is further ahead in language than I could have ever hoped for back when he was diagnosed at the age of 4. You will figure things out, one way or another!

 

 

It's times like these that I really, really, really miss his Early Interventionist. I didn't realize, until he aged out, how much she advocated for him with other services... and how much more likely they are to listen to his EI vs. his mom :P 

 

I'm going to buy the book you mentioned now. Thank you!

[Crimson Wife]

Does he have feeding issues? Because that actually IS an area where the Scope of Practice for SLP and OT overlaps. It is actually fairly common for SLP's who work with the elderly to co-treat with an OT for swallowing/feeding issues since that is a common (and very dangerous) complaint.

 

It just seems weird to me based on everything I have learned up to this point (~40 credits in Communicative Disorders) to give receptive language as a reason to want a SLP and an OT to co-treat.

[AimeeM]

Just a total rabbit trail, but there are music therapists who specialize in autism who could work with him on that too. There's special curriculum they use for teaching them to play piano even. :)

How would I find one? When I google my area and key words like "music therapy" and "autism," I don't really get any hits. 

[AimeeM]

Does he have feeding issues? Because that actually IS an area where the Scope of Practice for SLP and OT overlaps. It is actually fairly common for SLP's who work with the elderly to co-treat with an OT for swallowing/feeding issues since that is a common (and very dangerous) complaint.

 

It just seems weird to me based on everything I have learned up to this point (~40 credits in Communicative Disorders) to give receptive language as a reason to want a SLP and an OT to co-treat.

He does have feeding issues. Sensory related. However, while those were a big issue for us a couple evals ago (first clinic, with the "disaster OT"), at the new clinic I tried very hard to convey that feeding was getting better for him (with stickers as incentive, of all things -- shiny, sparkly stickers, lol), and that his bigger needs were sensory seeking behaviors and receptive language. His dx and the entirety of his neuro-psych eval support both of the needs I wanted focus on.

 

[Guest]

It's times like these that I really, really, really miss his Early Interventionist. I didn't realize, until he aged out, how much she advocated for him with other services... and how much more likely they are to listen to his EI vs. his mom :P

Is there any way you can contact her? Can you contact her for advice? She will know the local services better than anyone else and sounds like she cared for your son. There is no shame in trying ;)

 

I'm going to buy the book you mentioned now. Thank you!

You're welcome! I sincerely hope you find it useful :)

[Guest]

How would I find one? When I google my area and key words like "music therapy" and "autism," I don't really get any hits.

I had the same issue locally. I only found a couple of locations in the city. We are more than two hours away.

 

Not saying anyone should follow what I am doing but I just bought/ ordered resources to do my own thing. I am looking to incorporate several things so I am still gathering resources (books, adding instruments to our collection etc.)

 

Music therapy however has little to do with learning a specific instrument and more to do with the therapeutic effect of music in autism. I'm wondering if your focus is more on Marco learning a specific instrument!?

 

In any case, I found this source you might find interesting. I bought different resources for what I'm looking to do but have saved this resource for future reference. I'm still considering buying some of Ryan's materials in the near future. I have to think on this a bit more.

 

The source is the Rhythm Tree. You can see several videos of Ryan Judd working with kids, here. You can also read the areas that music therapy can help in:

http://www.therhythmtree.com/video-blog/latest

Edited June 3, 2017 by Guest

[Guest]

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Edited August 17, 2017 by Guest

[PeterPan]

Aimee- we have had language bumps here with OT work (integrating reflexes, etc) so what the clinic is saying is not crazy. Around here in office OT will be better than in home for these ages. They need equipment.

 

Around here it's autism charter schools that have music therapists on staff. Our state has disability scholarships and we have a surprising number of autism specific schools.

 

Ok I'll just toss this out. You might put moving on the table to get better access. You're talking a long road and this is something people move for. I have my choice of at least 3 high quality autism schools in a one hour drive. A new location, closer to therapies and options, could change your lives. With the level of disability you've got going it's helpful to have options.

[PeterPan]

Crimson I'm suspecting they saying what they say at our practice which is that kids with language issues who do good OT sometimes get language bumps. OT makes connections in the brain and language uses the brain. We saw it with ds. When we got his reflexes integrated we finally started getting IQ appropriate original sentences.

 

So I assume they're baby stepping her in the larger list she really needs.

[PeterPan]

Aimee I don't know if you know this but one thing about a BCBA or behaviorist is they can help you case manage, helping you prioritize and see where to bring in tools. It's about WAY MORE than just ABA. It would leave you less alone sorting this stuff out. Moms here are helpful but imagine having someone who has seen your kid, who sees how each step is working, making suggestions.

 

If you found the right person, it might be very helpful to you. You could take your time and just see if someone would click and be a good fit for you. I'm hyper picky and hard to work with and I found one LOL

 

It's how you build a team, so you're not alone, burning out. Maybe they give you options you don't anticipate like inhome worker hours for one while you take the other to therapy, who knows.

[Crimson Wife]

Crimson I'm suspecting they saying what they say at our practice which is that kids with language issues who do good OT sometimes get language bumps. OT makes connections in the brain and language uses the brain. We saw it with ds. When we got his reflexes integrated we finally started getting IQ appropriate original sentences.

 

So I assume they're baby stepping her in the larger list she really needs.

 

I agree that many kids who need SLP services also would benefit from OT. But there is a difference between the clinic recommending the child receive both therapies (typical) and recommending that a SLP and OT co-treat in the same session. Co-treatment is common when there are feeding issues but otherwise it's not. 

[AimeeM]

Aimee- we have had language bumps here with OT work (integrating reflexes, etc) so what the clinic is saying is not crazy. Around here in office OT will be better than in home for these ages. They need equipment.

 

Around here it's autism charter schools that have music therapists on staff. Our state has disability scholarships and we have a surprising number of autism specific schools.

 

Ok I'll just toss this out. You might put moving on the table to get better access. You're talking a long road and this is something people move for. I have my choice of at least 3 high quality autism schools in a one hour drive. A new location, closer to therapies and options, could change your lives. With the level of disability you've got going it's helpful to have options.

Moving isn't an option. We only recently bought the house we have and the middle kiddo has hefty, probably life-long, medical needs affiliated with the outpatient children's hospital here, which have been with him since he was a tot -- and he sees his medical specialists there frequently enough that moving would be a nightmare and we'd be right back in this same boat. 

 

We do have disability scholarships, but there is also our parish Catholic school which is moving into a SN-inclusive setting. It's still too new for us to look at right now, but we have high hopes for a couple years from now -- our priest is very invested in this and is really moving quickly on it, and the school is lovely as is, so we really believe their inclusion mission will work out well. 

 

I wouldn't mind just OT in-clinic. It seems like the last clinic we talked to wanted ST and OT tag-teaming, though, which would be problematic if their scheduling couldn't match up (which is their current dilemma with scheduling Marco -- they haven't a suitable OT and ST with the ability to schedule their hours like that, currently). Add to that another child (middle kiddo) who also needs certain services and medical access. 

 

We have several SN specific private schools in the area. None have music therapists on staff that I can see, though. His piano teacher, however, is very enthusiastic about learning how to work with SN kids, so I may be able to have her read some of the recommendations and work into a bit. Similarly, his ballet and tap teacher is very enthusiastic about the same. He made more progress, with this sensory needs, in her ballet and tap class than he did in actual services, actually.

 

Everyone seems to be working hard to find him services, which is a blessing. Waitlists aren't terribly uncommon for the more specialized services, so we just need to be patient, I think.

Edited June 3, 2017 by AimeeM

[AimeeM]

Is there any way you can contact her? Can you contact her for advice? She will know the local services better than anyone else and sounds like she cared for your son. There is no shame in trying ;)

 

You're welcome! I sincerely hope you find it useful :)

She moved, so what she can do is limited, but she does make herself available to me when I need to chat -- which is so kind of her. She was with him for years and we just miss her something awful. 

 

There is ONE card I haven't played yet and it just requires paperwork on my end. 

When our EI moved Marco was so close to aging out of the EI program that his EI went ahead and established him with out state's disability association and a disability caseworker. We were told that Marco qualifies for a personal care assistant and that we could choose anyone we wanted for the position. Our EI had a close friend with a Master's in early intervention and early education, who worked pretty specifically with autistic children. Said friend left the field shortly after she had her first child recently, but is interested in solidly part-time work. If you see where I'm going with this :) While we're waiting for Marco's name to come up on misc waitlists, and even after, it wouldn't hurt to have someone with her experience work with him -- and, the most positive about this possible scenario is that she's so highly recommended by our EI, who knew Marco very well and personally (and his EI knew what we did and didn't want from services, so she wouldn't have recommended someone who didn't mesh there).

[Guest]

She moved, so what she can do is limited, but she does make herself available to me when I need to chat -- which is so kind of her. She was with him for years and we just miss her something awful.

 

There is ONE card I haven't played yet and it just requires paperwork on my end.

When our EI moved Marco was so close to aging out of the EI program that his EI went ahead and established him with out state's disability association and a disability caseworker. We were told that Marco qualifies for a personal care assistant and that we could choose anyone we wanted for the position. Our EI had a close friend with a Master's in early intervention and early education, who worked pretty specifically with autistic children. Said friend left the field shortly after she had her first child recently, but is interested in solidly part-time work. If you see where I'm going with this :) While we're waiting for Marco's name to come up on misc waitlists, and even after, it wouldn't hurt to have someone with her experience work with him -- and, the most positive about this possible scenario is that she's so highly recommended by our EI, who knew Marco very well and personally (and his EI knew what we did and didn't want from services, so she wouldn't have recommended someone who didn't mesh there).

Yup, I figured she sounded like the type of person that would most likely keep in touch :)

 

I totally see where you are going with this and I think it sounds awesome! This sounds like the perfect case scenario! I agree that the EI would not have recommended her if she didn't think she would be a good fit for Marco and your family.

 

I'll be praying for the best possible outcome :)

Edited June 5, 2017 by Guest

[Guest]

Private info. Deleted.

Edited June 5, 2017 by Guest