Jump to content

Menu

and the asd saga continues...


Recommended Posts

I was finally getting my head wrapped around everything, lining up the professionals I needed to, etc. One appointment I needed to do was with his primary in order to discuss the anxiety piece. So, I updated her on the heavy metal testing results and asd diagnosis... she asked all these questions about when I noticed the symptoms and behaviors starting and I gave her the same story about his breech/prebirth behavior/behavior as an infant, etc. but she got stuck on the fact that he passed the initial autism screening and then "grew further into the behavior issues".

So she thinks lymes is driving the behavior (because we are seeing regression in behavior right now, she considers the original behavior regression because of the asd screening, and because he had bells palsy last year) and is having us do labs to see if he tests positive. She told me we'd likely need a different better test if the first one comes back negative. The thing is, I've been told that the autistic symptoms can come and go and the regression in behavior right now (starting mid sept.) happened about a month after we discontinued OT and dad went back to work after having the summer off (teacher) and the behaviors are increasing as we are cooling off outside and have to wear longer clothes, etc. So I can see a lot of stuff that could be driving the behavior that she didn't really seem to take into account.

She also thinks that I should put him in public school, (AGAIN with this suggestion!!) The insurance company wants me to get him a different primary because his current one is out of network, and I'm starting to consider that at this point! 

And she is going to get us into another nurse practitioner for a consult because our dr. doesn't specialize in mood and behavior and asd stuff and this other lady does. So we didn't get ANY answers on the anxiety because she wants bloodwork and this consult for that. 

And I'm left feeling like she wants to "cure" the autism, and struggling with the idea that if it's lymes then we went about this in the wrong order... and just getting plain MAD at people assuming that because it's "autism" on paper, I need the public school system. Because OBVIOUSLY the public school system can do better than me when everyone was telling me that he was fine for the longest time and it was ME that insisted that something more was going on!!

Link to comment
Share on other sites

I think you need to look for a doctor who has a lot of familiarity with autism in their practice.

This doctor can be really good with other things but doesn’t sound like a good choice right now.  

Especially if you need another doctor anyway for insurance practices, maybe see if you can find a good one.

I had one offer me drugs (!!!????!!!???!!!!) for my son and frankly I knew much more about autism than he did.  I do think that was maybe a PA?  I don’t know.  He was trying to be helpful and maybe just letting me know it wouldn’t be a problem if I did want drugs.  What is awkward is some parents will need drugs and get brushed off, and it could be really helpful to another person. 

But I did not like it, it made a poor impression on me.

Anyway — hopefully you can find a doctor who is knowledgeable and who hears about local options in your community.  That is what is helpful to me.  My son is physically healthy but he needs services, so information about services is what is most helpful to me.  

Edit:  I know many who have had minor to excellent benefits from medication, I am very in favor of using medications.

This time it was just really random and it did not come across well.

He had never heard of ABA and it turns out my son responded very well for his behavior issues, and at the time we moved and met this doctor, my son was not having any behavior issues.  The doctor just assumed it from seeing him present as having a more obvious representation, that is what I think.

At the same time he was very engaging with my son iirc, and that is most important. 

But it does happen sometimes — someone has seen a success story and thinks maybe it will help the next person they see, but autism is not like that, it varies so much for different kids.  

Edited by Lecka
  • Like 3
Link to comment
Share on other sites

I think/hope it will be a lot easier once you have your services and service providers lined up, have figured out what will be helpful, have figured out a balance between therapy and life/other..... figuring it out at the beginning is a lot of work, but then a lot of things can go on auto-pilot.  

  • Like 1
Link to comment
Share on other sites

1 hour ago, mamashark said:

So, I updated her on the heavy metal testing results

That's pretty non-traditional to start with. Who is this person?? I mean, I did chelation, had my amalgams out, all that, so I'm kind of on board with people doing things differently. 

1 hour ago, mamashark said:

because he had bells palsy last year

I'm kind of unclear on the timeline here, but it's not "curing autism" to want to have medical problems explained and to connect dots. It's a legit question why he had those symptoms and whether they're connected to current symptoms. You could have both things going on, but there's no way to say autism caused the bells palsy, right? Therefore he AT LEAST has a medical problem. Was that medical problem considered dealt with and cured/resolved when you went for the psych eval?? And was the psych aware of the medical history?

I think at least take a deep breath. Any doc who says to put him in the ps every time you walk in the door is at least not being helpful. She has clearly riled you up. Sometimes these people are seeing things they aren't explaining, and sometimes they're just related to donkeys. Personally, I'd suggest you put everything she said aside and take a LONG WALK this weekend and steam and shower, drive somewhere nice, eat out by yourself or with someone you like, indulge in three pieces of cheesecake...  When I can't get back to my peaceful self and hear my own mind and voice for the answers, that's sometimes what I need to do, long walks, hot showers...

1 hour ago, mamashark said:

she is going to get us into another nurse practitioner for a consult because our dr. doesn't specialize in mood and behavior and asd stuff and this other lady does. So we didn't get ANY answers on the anxiety because she wants bloodwork and this consult for that. 

This actually seems like a really sensible referral!! There's a lot of data about good results with np's who specialize in psychiatric. That's not all bad. Now what IS crummy is if she isn't an autism specialist and she's seeing just this one angle, like just the anxiety or just the psychiatric. Honestly, if you think it's autism, it makes a lot more sense to look for answers in the autism community. They already know the ropes on how things connect and what to look for. It's not like you have to invent things here. Like I have my ds in for counseling right now, and where *I* thought they would work on xyz, the actual big thing they work on every week is self-advocacy, go figure. Like why reinvent the wheel here. Go to the autism community for autism-related problems. 

But this bells-palsy and whether it's fully treated or whether it needs a referral, I don't know. Lyme is a tricky, controversial thing. You can go to the CHAT board and post about Lyme and get the scoop from ladies. I'd be asking other questions (just me, not knowing much), like why not a referral to a neurologist, why not genetics, etc. That seems like a really significant thing that happened and it needs to be explained and completely treated.

The other question to ask about this np is whether she's trying to do counseling or meds. Do you want meds? You want genetics? For blood tests, they're wanting liver? What are they looking for, kwim? They can test lithium levels and some b-vitamins. Or they've got something else they're looking at?

What I find, and this is just my word of peace to you, is that EVERY PRACTITIONER I call has some kind of answer. I was on the phone with an OT today, and she's like oh man you would not BELIEVE the miracle cure that is Neurovascular Integration Therapy!! She's like oh I never work with anyone without doing it, so foundational, so amazing. I'm looking into this, and I'm like woman you're an idiot. And whether it's behaviorists or SLPs or the social thinking people or the biomedical docs or OTs or whatever, they all have their gig and how valuable they think their stuff is. You could approach this SO MANY ways. The trick then is to TRIAGE and decide what is most important and what YOU think is pivotal. Sometimes you might find someone to help you, like maybe a behaviorist, but ultimately YOU as the PARENT are going to decide the triage order on these options.

So don't let anyone screw with your head. Stop, get quiet in yourself, and think about how to triage and what needs to be triaged first. Is it language or interceptive awareness or some medical issues or food allergies or that ABA level behavior or... What would make the BIGGEST difference right now or be pivotal and unlock other areas to make other areas work better? And then, if you have someone you trust, you could ask them what THEY think is pivotal. They might have a different take, which can be interesting to challenge yourself with. Like maybe others look at my ds and think compliance is a pivotal issue. The psych thinks self-advocacy is pivotal. Everyone has an opinion. You can pick what is important and pivotal and pick what to de-emphasize or wait on. 

And usually what happens, when parents do that, is it's just different paths, different journeys. It's not usually wrong or ruinous. It's usually more like someone has to drive the plan and this is my plan and I'm the driver of it and I'm not gonna be confused about it. You drive. Your kid is your wingman. Everybody else just has opinions.

Link to comment
Share on other sites

23 minutes ago, PeterPan said:

That's pretty non-traditional to start with. Who is this person?? I mean, I did chelation, had my amalgams out, all that, so I'm kind of on board with people doing things differently. 

We had a hair analysis done through our chiropractor, and our primary is more natural/holistic and has done IGG testing on our daughter and some other stuff so I thought it would be beneficial to give her a copy of the results. Although after today I'm not as happy with her because of the whole public school thing.

25 minutes ago, PeterPan said:

I'm kind of unclear on the timeline here

He got a bad cold/virus followed by bells palsy after we began the psychiatric evaluation in January. This does not explain any of his behaviors beyond the fact that  the prednisone treatment cleared up his symptoms rather dramatically and thus triggered the dietary changes. Which have done wonders for behavior. The bells palsy is cleared up and not an issue anymore beyond providing her a pattern of illness, I suppose.

And yes, I agree, lymes testing is probably a great thing to do, and I agree with consulting with the NP who specializes in autism/anxiety/mood stuff. 

I fully agree that I need to go to the autism specialists and not reinvent the wheel. Thus I'm not terribly upset about not touching on the anxiety today, I get that, I think I'm just annoyed overall and you're right, a long walk and hot bath is in order.

I just disagree that the public school is the right way to go. Our specific school district sucks for sped kids and I KNOW I can do better than them even if I didn't have any professionals in my court. I need wine. and a nap. and a long walk. 

And I have to figure out how to get my kid to comply with a blood draw... fasting... I hope they have a lot of staff members there in the morning because it's not gonna be pretty. 

Link to comment
Share on other sites

No there is legit stuff like PANDAS, etc. that is connected to autism behaviors after an illness. It's a totally legit question. 

Then don't do the blood draw. You could meet the practitioner first and decide whether you even want what she's offering.

It doesn't sound like your doc office gets autism. It's not as easy as just oh let's go draw blood. It's getting them in the car, will they ever do it again, on and on. There better be some STRONG REASON to go through that, because you're gonna use a lot of capital getting there. 

Link to comment
Share on other sites

Honestly this specific doctor may not be clued in on different school districts enough to even be able to have something relevant to say about public school.  

Quality and type matters, and sometimes a program is available that is great for some kids, and then there is just nothing for other kids.

When people make these blanket statements about “such-and-such is available at your local school” but it’s obvious they just are not particularly familiar with what is available....... it’s just not very useful. 

I hear a lot of ignorant stuff.  A lot of people either have no idea, or they know about one situation, but have no idea what my child’s situation is or would be.  

Also there are always pros and cons for any situation with special needs.  It is really naive to think that there would not be some cons to attending even an appropriate, quality situation. There just will be cons of some kind.  

What I do think — in some ways you may, over time, may need to separate out and look for where you can get good information or have a nice conversation with someone, but they may also say some un-informed things, but not mean-spirited.  I say a lot of things like “for our situation blah blah” when someone is just putting me into the wrong box or saying something uninformed.  

But your child is newly diagnosed, it’s pretty soon for that!  

Anyway, I hope it will work out, whatever you decide.

I have had to get a lot better at “polite assertive” at times.  This might be something where you like it overall and can be firmer in not being interested in school at this time.  Or it can be something where you find somebody else.  Whatever you are comfortable with, and whatever your options.

I think you would be fine to try the nurse practitioner in the same practice, and not assume that person would say the same thing.  

  • Like 1
Link to comment
Share on other sites

I think the Lyme stuff sounds like a waste of time.  I don’t think you are obligated to follow up on it.

But if you have a sense of wanting to rule it out, or if you have a sense it’s possible, then it’s good!!!!!!!

I think it’s really up to you and your husband.  

Also — I would be curious if another doctor saw the same info and also recommended the same course.  That would make me think it was a better idea.

But saying the M-CHAT screening didn’t show anything — I think the M-CHAT is such garbage.  Total garbage.  It is a red flag to me, personally. 

But I don’t think there is a right or wrong choice, just what seems best to you and your husband. You are the ones on the scene and getting a sense of things.  

Edit:  I think I meant the M-CHAT!!!!!

Edited by Lecka
Link to comment
Share on other sites

11 minutes ago, Lecka said:

“polite assertive”

Bingo. And it can be kind of helpful to dig in and figure out why you aren't doing that. Like me, I let people target me with their comments because I WISH, so wish, that I could just hand him over and go boom that got done by professionals and it's right. Well sorry, not reality for ds. But I sort of nurse that quiet dream and open myself up to their comments. 

So polite assertiveness is also your armor of I may not be perfect but we're fine for now.

And I agree that right after you get a diagnosis is NOT the time to make sweeping, major changes. You would spend untold hours fighting in an IEP process. You start by building a team, finding your major issues, then deciding what would be pivotal and who should tackle what. I keep people for my inner circle that I trust to say things straight. Like I have a behaviorist who's a social worker, and if she thinks we're not on track, she's gonna SAY so. So I run things by her, use her as a scapegoat, let her be backup for my brain. 

Our behaviorist says to remember that school is there for seasons. Is this a season when it's a good choice? It's ok to make that choice! But if this is not a season when you need that choice (things are going fine, the household's needs are all being met, etc.), then what gives? Then it's just opinions and people will have opinions out the wazoo. The most valuable opinions will be from your team members who are with him a significant amount who also know the long-term progression of autism at his IQ and support level to know where this is going and whether you're on track.

Edited by PeterPan
  • Like 1
Link to comment
Share on other sites

well, I tried responding but I'm in major snark mode and can't think of anything nice to say about anything so I am going to go make popcorn and read my fiction book and pretend my kids don't exist for a minute before they all come in desperately hungry for my popcorn... the shower basically helped me hit that "fine I'll put them all in the system, feed them what the  USDA food pyramid or plate or whatever it is now says to, get rid of the fish oil, and  pump them full of the drugs you recommend... and when that doesn't fix them I'll just throw my hands up and say sorry, you're the professional, you were supposed to fix what I screwed up!"

 

  • Like 2
Link to comment
Share on other sites

It's ok to feel snarky and angry!! You went to them for help and they're not giving it.

PS. Sounds like the shower was a success, because now you know how you feel. You're gonna feel a lot of things. It's how you're developing your shoe leather thick hide. You're gonna be a tiger.

Edited by PeterPan
Link to comment
Share on other sites

I opened myself up to a lot hoping things were my fault, my son didn’t really have autism, and I also opened myself up to some things with unrealistic expectations from OT.  

I thought OT would be miraculous and lead to fast, easy toilet training.  Either people told me this or I heard what I wanted to hear!!!!!!!!

I have a complicated relationship with OT, I like it and I have done a lot with it..... but it has led to disappointment for me with both my sons, wishing it would do more.  

But it was just not realistic expectations for me to have, I think.  Although some kids do exceptionally well!!!!!!!!  My kids have also done very well in OT, but — just not what I pictured in some ways, less than I hoped.  

I thought I would have the same outcome as a totally different kid, but it doesn’t work that way sometimes.  

  • Like 1
Link to comment
Share on other sites

2 minutes ago, Lecka said:

I have a complicated relationship with OT

It is the hardest profession to pin down and feel confident like you're using evidence-based practices and on a sensible path, that's for sure. I've got an OT trying to do handwriting worksheets and compliance drills and calling it therapy. She makes him dizzy and headachy and yellow zone, so he goes into his next therapy person THROWING things, and they're like oh it will come with time. I mean, total buffoonery and idiots. And when I confront it, they're like well did you tell her what you want? I'm thinking, hello, actually be trained to do your job. Know Zones, know how to work with autism. It was novel to her that she might even use a visual schedule!!!!!!!!! But I'm a terrible parent if I fire her.

That's in a school btw. You want lowest common denominator therapy, demotivated therapists, oh my. I mean, some are fine, but I'm about to get SO CYNICAL that it's mind-boggling. They don't lose their jobs if they're incompetent. They're used to kids showing up and leaving and the parents having NO CLUE if real progress is being made. Everything is hidden and kids just check time and people get paid, irrespective of results.

School has some really good things it does!!! It totally does a disservice to my ds if I hide my head in the sand about that. And that's something the op will think about with time. I wasn't doing that initially. That was like after a year I went ok, what would school do better? If I admit that, then I admit our holes and can do better. And sometimes I go ok those skills were good and I want him to hit them other ways.

There's a lot of suboptimal, shove them through, in the school system. There are people trying to treat, but the cut-offs, the amount of therapy they can get, the lack of customization, there are significant issues. My ds is, I think, moving out of the try hard with therapy window and into the oh well it wasn't gonna come anyway stage. And that kinda sucks, because as a parent we might feel a bit more aggressively about some things. The best innovations right now, like in OT with the new Interoception stuff, are CUTTING EDGE! These people aren't even trained to do it yet!!! It will take years upon years to trickle this through the system, and I need it for my ds NOW and it's pivotal for him NOW. 

So me, I'm thinking this weekend about what the value was of one provider, one set-up, and whether I need that *in addition* to xyz other good thing. It's hard stuff. But I think put your energy into productive stuff, real questions.

Link to comment
Share on other sites

9 minutes ago, Lecka said:

I have a preference for people sometimes who *have kids.*. They know nothing is as simple as it may seem!  

You know best as a parent!

Actually, that's a total aside, but I've been trying to decide if I have some kind of bias against young therapists. A lot of these OTs are young, and if they're young and unmarried, they don't have gravitas. They also don't have that experience with kids and don't get that a parent is gonna be like a bengal tiger fighting for the best. But they also don't have that confidence of I'm gonna say it and I mean it and it's gonna go that way. The kid picks up on that. And it's not bossiness either, just sort of congenial authority. 

So anyways, it makes it sticky, because young therapists want to be employed too, lol.

  • Like 2
Link to comment
Share on other sites

I have seen young therapists be really good if they had their hands-on training with someone really good.  

I have also seen some that have a surprising amount of experience with kids.

Where I used to live, a lot would have worked at special needs summer programs while they were in college.

I can think they are great.

But I think they can be....  I think they can see less satisfaction in progress at times.  I think they can be unaware of how it works to generalize skills outside of a highly-structured setting, and how important that is.

I think they can have some rose-colored glasses and also they can be a little disappointed or short-sighted and don’t see big progress coming in small bites, which I really appreciate in a therapist.  I can see it in a younger-than-me therapist, lol, but I see it more with people closer to my age.  I think it comes from seeing kids grow up!  

And then just — with anybody without kids, they may not understand how things do not always go according to some ideal plan.  

  • Like 1
Link to comment
Share on other sites

Also I have opted out of a school OT session before.  It was for group OT, it wasn’t going well.

Its okay to do.  

I have also pulled him from a clinic with speech and OT, that just was not working out.  OT was not going well at all.  Like — she couldn’t keep him from throwing things.... he was not engaged at all.  It was not a good situation.  

Its really sometimes good to make a change.  

 

Link to comment
Share on other sites

3 hours ago, mamashark said:

He got a bad cold/virus followed by bells palsy after we began the psychiatric evaluation in January. This does not explain any of his behaviors beyond the fact that  the prednisone treatment cleared up his symptoms rather dramatically and thus triggered the dietary changes. Which have done wonders for behavior. The bells palsy is cleared up and not an issue anymore beyond providing her a pattern of illness, I suppose.

I am not sure how the dietary changes relate to the prednisone, but I do want to point out that prednisone can make people react all kinds of different ways--anything from super energetic to anxious and depressed to super hungry or no real change at all. Illness (Lyme, PANDAS, etc.) can make people have a sudden onset of anxiety (I think that is at least one thing you've said varies with diet?). Anyway, it's real in some cases, but it's also potentially a great big bunny trail. So, maybe he has Lyme, but it could also be that behaviors changed due to prednisone. That is at least as likely, in my own personal experience of being treated with prednisone.

I really think it's okay to try to kind of get a feel for where this is going before you decide--you can have autism plus other things. I think you just probably want to have some idea of what "going there" could entail.

3 hours ago, Lecka said:

But saying the M-CHAT screening didn’t show anything — I think the M-CHAT is such garbage.  Total garbage.  It is a red flag to me, personally. 

I second this! 

  • Like 1
Link to comment
Share on other sites

I'm sorry. If it were me, I would have gone into the doctor, believing that she would be helpful and on my team, and i would have been sidelined by receiving a different reaction that I expected. Even if some useful things come out of appointments like that, the overall effect for me is to feel upset and angry and misunderstood. It can take awhile to process the experience and sort the wheat from the chaff.

I hope your popcorn therapy is helpful!! I love popcorn myself, and often go to movies alone as a stress reliever. Being alone, eating popcorn, and reading a book would be helpful to me!! I hope you find it clears your mind and soothes your spirit.

  • Like 3
Link to comment
Share on other sites

3 hours ago, Lecka said:

I have seen young therapists be really good if they had their hands-on training with someone really good.  

I have also seen some that have a surprising amount of experience with kids.

Where I used to live, a lot would have worked at special needs summer programs while they were in college.

That may be what I'm seeing, a lack of experience with AUTISM. Her work was focused on visual processing previously and that's what her phd is in. I think she worked with a lot of more typical kids and isn't connecting with autism. She doesn't seem to engage, even when she tries.

  • Like 1
Link to comment
Share on other sites

3 hours ago, Lecka said:

he was not engaged at all.  It was not a good situation.

Yup, he's actually trying really hard to be good, but she's not engaging him. She isn't addressing the cognitive and is sort of emotionally distant. She doesn't give feedback or instructions during sensory, slouches during the handwriting, and is just sort of losing control. She was too demanding before, so I think maybe she swung the other way. So he went from refusing to go to being ok with going (as it's no longer dreadful) but leaving yellow zone and dysregulated. And that sorta defeats the purpose if they leave worse than when they came. No good carryover, total, total flop.

But it kills me, because I wanted it to go well and gave it a long time trying. And they frame it like I should give feedback that makes it better, and I'm like hello train your people.

  • Like 1
Link to comment
Share on other sites

I do have a couple of things to comment on.

I don't know anything about lyme or Bells Palsy or heavy metals, etc. I really don't. I think it could be good to look into the medical things. I also know that Lyme can be hard to diagnose, and that people can pass one test and find out later that they really have Lyme after all. So your doctor's comments about not giving up testing for it, even if it's negative, could be wise. Or it could signal that she is a person who wants to believe that the autism is not there and so will seek out another cause even if evidence suggests she is on the wrong track.

My thoughts on that are twofold:

1) that it can be really hard to tell whether someone has autism, but people like to kind of pronounce "this child obviously does not have autism" out of the blue. We've had that said of DS several times (he is not diagnosed, but I still suspect, sometimes). But the point is that people like to think they can just TELL. But it's not that easy, so those kind of easy pronouncements should be taken as just one person's unsubstantiated personal opinion.

Personally, I would trust a true autism screening over someone's opinion.

2) We worked with an OT who told us flat out that she didn't believe that most kids diagnosed with ADHD had ADHD and that we should not be medicating DS. This was before she even had worked with him much. It was just her thing to believe. She was interested in sensory issues and thought that working on sensory issues was the key to everything and that ADHD symptoms would go away. In her opinion, we shouldn't believe in ADHD but should believe in SPD.

So some people just have a thing that they believe, and they want it to apply to everyone across the board.

That kind of leads into the school thing. I think it's a common thing for people to suggest. I heard it myself from my doctor when we were homeschooling. If someone is really arguing with you and telling you that you are wrong to homeschool and are ruining everything, then by all means, be MAD!!! But if they just mention that they think enrolling in school might be a good idea, I'd advise just ignoring it. It's not worth spending energy being mad at them for making a suggestion that you disagree with. It's normal to feel irritated, of course, but maybe you can try to consider it a little deal instead of a big deal, in the grand scope of things.

There may be reasons to stick with this doctor -- if you decide to follow her recommendations for exploring Lyme, etc. But if you think she is grasping at straws, and especially since she is out of network, it may be an okay time to move on. You can always bring up her suggestions to a new doctor and say, "what do you think of these ideas?"

These kind of encounters are so frustrating! I hope you see a clear path to follow. You don't have to have all of the answers -- just figure out the first steps.

Edited by Storygirl
  • Like 3
Link to comment
Share on other sites

15 hours ago, PeterPan said:

Sounds like the shower was a success, because now you know how you feel. You're gonna feel a lot of things. It's how you're developing your shoe leather thick hide. You're gonna be a tiger.

Thanks - this was actually one of the most encouraging things I've read in the past 2 weeks!

15 hours ago, Lecka said:

I have a complicated relationship with OT, I like it and I have done a lot with it..... but it has led to disappointment for me with both my sons, wishing it would do more.  

I have experienced similar with OT, and we are going in for a re-evaluation and starting again on Monday - this time I am going in with a specific list of goals that I want to work on and see what they say. This happens to be the OT we left because they told me that it was "behavioral" and all the rest of the OTs that are worth my time have waiting lists of up to 2 months!!  So back we go to the other one, and they're like "oh, he's autistic! That changes things! we'll reevaluate and figure out what to do from there!" and I'm rolling my eyes and saying ok, but these are the specific things I want from you.

15 hours ago, PeterPan said:

There's a lot of suboptimal, shove them through, in the school system. There are people trying to treat, but the cut-offs, the amount of therapy they can get, the lack of customization, there are significant issues.

My husband works in a school that is GREAT for sped kids. Like, people move to that neighborhood just to put their sped kids in his school. There may be a way to get our kids in there sine he teaches there. BUT the sped teachers have case-loads of 20 kids each. TWENTY! There is no way they can service those kids effectively! I was a sped teacher and couldn't properly provide individualized services when I had a caseload of 15! Talking to my husband about it helped tonight because he reminded me of my background and training, how I actually have the skillset to individualize stuff for sped kids and that with the right team in place, we can provide MUCH better services to our son.

11 hours ago, Storygirl said:

But the point is that people like to think they can just TELL. But it's not that easy, so those kind of easy pronouncements should be taken as just one person's unsubstantiated personal opinion.

Yes - and I got the feeling that she was like "he's totally testing positive for autism but it's really caused by lymes!!!!!!!!" and she even went as far as to say that every issue I have with every kid would be resolved by treating lymes. I told my husband she acted like it was like the cure all - he told me she's looking through a single colored lens and that there's no magic pill that will cure "childhood". 

11 hours ago, Storygirl said:

In her opinion, we shouldn't believe in ADHD but should believe in SPD.

 

I see your point here - we worked with an OT like that. I think ADHD and SPD are too complicated and intertwined to just make that kind of clear distinction. We've fought through that issue with our eldest daughter. ADHD meds didn't work for her, OT work did. So for her, I think SPD. I think the bigger issue with her is SPD and Giftedness blend together in weird ways that make her just unique. 

 

11 hours ago, Storygirl said:

These kind of encounters are so frustrating! I hope you see a clear path to follow. You don't have to have all of the answers -- just figure out the first steps.

Yes. I need to keep in mind that the next few steps are the important things to figure out and not the entire path. My husband talked last night about what to do next and some specific things that will help me feel more confident to talk back to the dissenting opinions, like public school. Which, btw, the dr. asked about it, then revisited it, then questioned me about it a third time. So she was specifically disagreeing with our decision to not use the public school. That said, I have had a psychologist with extensive background with autism tell me we're doing the right thing to homeschool, so I'll trust that opinion over an unqualified family practitioner. 

  • Like 4
Link to comment
Share on other sites

Wow, on the case load.  I think my younger son has always been with teachers who had a case load of 12.  Right now he is in a 12:1:3:1 class, which I don’t completely understand, but there is a lead teacher and an assistant teacher, and several aides.  

Link to comment
Share on other sites

Also I think with autism professionals, they are open to homeschooling, because they don’t have rose-colored glasses.  

Like — they are used to dealing with real situations, not pretend situations.  

It’s hard to explain, but I think it’s just something where some people don’t really get that close and want there to be an easy answer.  

Like — they see you are maybe stressed and tired, or see that there are hard times for you and your son, and think how great it would be if there was an easy answer like “Lyme disease,” “public school.”  

It’s just not going to solve all your problems so simply and easily.  

Also I am so over the autism fear factor.  It is not something to be so afraid of.  My son has been in a district-wide program for the most severe kids, and every one of them had a connection with their parents, their aide, and their teachers.  It is just not necessary to be like “ooh it’s so scary, it must be Lyme disease, then everything will be okay.”  It is already okay!  

  • Like 2
Link to comment
Share on other sites

2 hours ago, Lecka said:

Wow, on the case load.  I think my younger son has always been with teachers who had a case load of 12.  Right now he is in a 12:1:3:1 class, which I don’t completely understand, but there is a lead teacher and an assistant teacher, and several aides.  

Different types of classes have different legal requirements. That probably varies by state, but it's definitely regulated. So a low ratio room here is 1:3. That means 1 teacher and 2 aides for 9 kids. So it depends on the legal classification of the room as to what the required ratio is.

Link to comment
Share on other sites

We had to fire our primary care physician when it became obvious that she did not understand sensory and spectrum issues. It’s ok for her to be well grounded in just the basics of primary medicine—sprains, coughs and colds, rashes and not be up on all of the developmental stuff.

Our last two pediatricians have autistic children themselves. If they weren’t day to day LIVING it then I would have my SN kids with developmental peds specializing in the SN my kids have.

It’s actually been a huge blessing to have doctors that get it. They accept everyone at face value and understand that I am just tired...so very tired sometimes when we’ve all had a bad week.

  • Like 2
Link to comment
Share on other sites

9 hours ago, prairiewindmomma said:

Reading in....I know a bit about Bell’s Palsy (dd had it). It’s pretty common for it to occur post-viral and resolve weeks to months later.

That doesn’t have me automatically jumping to Lyme...

And he had a fever shortly before he was diagnosed with Bell's Palsy and the diagnosing ER doc wasn't concerned about lymes. We went ahead with the testing because she was testing other stuff too so we figured it would be good to do, but it was a huge deal, so if it comes back negative we're not going to even attempt the second lymes test. 

I am so discouraged today because we had an OT evaluation that he literally had to be chased down by the OT because he left the building and she was closer to the door than I was. I didn't believe he'd actually go out the door, he's never actually bolted and left the building before. I know they see all kinds of behavior there, but I was absolutely beat after that hour and a half - literally and mentally, because he was in a crazy mood and I'm left wondering what happened to the improvements we saw with dietary intervention. I mean-  seriously, I'm back to the point I was at about a year ago where I'm afraid to go to the grocery store with all 4 of my kids at once because if he gets in one of his moods, I'll be in over my head and not have enough help to even just get everyone back into the car because my youngest is still 3 so he's too young to be self-sufficient if necessary. I'm seriously doubting the benefits of continuing to control his diet at this point as I watch his good behavior melt before my eyes. 

But seeing the entire autism diagnosis as regressive isn't accurate, so I disagree with the lymes concept, even though the idea of an antibiotic being our magic pill is tantalizing. But explain the idea of regression to me! Why is he regressing so badly right now?!!? 

Link to comment
Share on other sites

1 hour ago, mamashark said:

And he had a fever shortly before he was diagnosed with Bell's Palsy and the diagnosing ER doc wasn't concerned about lymes. We went ahead with the testing because she was testing other stuff too so we figured it would be good to do, but it was a huge deal, so if it comes back negative we're not going to even attempt the second lymes test. 

I am so discouraged today because we had an OT evaluation that he literally had to be chased down by the OT because he left the building and she was closer to the door than I was. I didn't believe he'd actually go out the door, he's never actually bolted and left the building before. I know they see all kinds of behavior there, but I was absolutely beat after that hour and a half - literally and mentally, because he was in a crazy mood and I'm left wondering what happened to the improvements we saw with dietary intervention. I mean-  seriously, I'm back to the point I was at about a year ago where I'm afraid to go to the grocery store with all 4 of my kids at once because if he gets in one of his moods, I'll be in over my head and not have enough help to even just get everyone back into the car because my youngest is still 3 so he's too young to be self-sufficient if necessary. I'm seriously doubting the benefits of continuing to control his diet at this point as I watch his good behavior melt before my eyes. 

But seeing the entire autism diagnosis as regressive isn't accurate, so I disagree with the lymes concept, even though the idea of an antibiotic being our magic pill is tantalizing. But explain the idea of regression to me! Why is he regressing so badly right now?!!? 

Because he just is.  Sometimes there's no reason.  Sometimes 2+2 equals a banana, like they say on West Wing.  Sometimes it's because the weather is changing and they're bothered by the barometric pressure or because the increased sensory demands of winter clothes exceeds their ability to cope or because they're getting sick or because they're allergic to mold or because they saw a commercial at a restaurant that scared them or because he's having absence seizures or because the days are getting shorter and he's not getting as much exercise or because Dad's work schedule has thrown something off or.....  There's not necessarily a reason.  We want a reason because we want to fix it, stop it, have control.  And most of the time, it just sucks.  I'm sorry.  

  • Like 2
Link to comment
Share on other sites

3 hours ago, mamashark said:

I'm seriously doubting the benefits of continuing to control his diet at this point as I watch his good behavior melt before my eyes. 

Ok, this is just my two cents, but it sounds like the diet helped *some* and as the demands are increased then you start to see what remains. So it's not fun, but at least it dispels any thought that you're crazy asking for more help. He clearly needs help and ought to be able to go into OT and have a positive session. He's 6? My ds has an IEP and when we set it up reality was that he had behaviors like that. I can tell you that his IEP has him placed at a different elementary school, not at the one closest to us, and they have a self-contained building that he wouldn't be able to get out of. You're going to have to think hard about safety. I think we need to see more, but you've got a challenging situation. You may need to hire a sitter and observe sessions, or you may need to hire a behaviorist ASAP (have we said that enough yet?) and have a behavior plan made and have the OT and anyone else who works with him FOLLOW THE BEHAVIOR PLAN.

My ds is 10 now, and I still have the behaviorist update his behavior plan and I still give it to therapists. Some are super intuitive and they figure it out, but these people are not super geniuses and not trained on everything under the sun. Only your behaviorist will be trained in a wide range of things and see across the disciplines. Everyone else is pigeon-holed. So you're about to have a dangerous situation and the sooner you get a behaviorist and get a behavior plan and work the behavior plan, the better. I would keep your diet but I would add to your team.

With my ds, I have things we do dietarily that are generally useful but not like maybe superfirm. Like I can let them bend for a day, but if we bend too much and demands are high it's really going to show. I think it's ok to try a small reintroduction and see what happens, if you have time to deal with the side effects. I don't, so for me it's easier to tow the line. So he gets limited dairy and wheat, end of discussion. The amounts and occurrences are low enough that a dab here or there doesn't ruin much. It's a balance I can live with, and sometimes that happens for people that by going off stuff they get the system chilled and they can tolerate a *small* amount infrequently.

I also have strategies for when he gets into stuff, like I keep calm child, which is an herbal tincture with chamomile, etc. I used it on my ds last night and tonight because something is not right and we put safety above everything. For starting with a new therapist, anything really stressful, I will often have to pre-dose him with that (to help him sleep well) and then dose him morning of. We can have to do that for 2-3 months till he gets chilled. Then, as he chills and gets into the routine, then we can fade it back, like keeping the night before but not the morning of, etc. For some things we do, that has worked really well. The behaviorist can help you sort out the functions of the behaviors so you can problem solve more accurately. My ds was anxious about the appointments, the difficulty, the change in therapists, the waiting, etc., so things that helped anxiety were good strategies for him. Sometimes it's hard to problem solve. Your behaviorist might need to go to the OT appointment and observe to problem solve it. It will be money well spent. Sometimes it's just the OT is incompetent, but sometimes they can do better with that feedback. They're not going to be a behaviorist AND an OT, but if you build a team and help the team work together, then everyone will work better. 

Don't go oh I don't need this, oh I've got it. Just build the team. If your insurance will cover it, then getting a behaviorist you feel comfortable with will be your big score. Mine is like, oh my, she's the gold, the glue.  

  • Like 1
Link to comment
Share on other sites

3 hours ago, mamashark said:

Why is he regressing so badly right now?!!? 

Is he regressing or are demands increasing? I don't know him. Have you read Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism) This book might help you sort out the underlying reasons for the behavior, the functions. Behavior is communication. It might be that what they mean by regression (moving back through developmental timetables for speech, motor planning, etc.) is what you mean. You might mean an increase in challenging behaviors. Or do you literally mean regression? Like he's losing speech, more withdrawn, losing ability to do ADL (daily living tasks), etc.? Regression is horribly important if that's actually happening. That would be time to have a talk with a doc PRONTO.

Link to comment
Share on other sites

9 hours ago, PeterPan said:

You might mean an increase in challenging behaviors. Or do you literally mean regression? Like he's losing speech, more withdrawn, losing ability to do ADL (daily living tasks), etc.? Regression is horribly important if that's actually happening. That would be time to have a talk with a doc PRONTO.

I mean an increase in challenging behaviors. His communication and ability to do ADL are still there. His fuse is shorter, his switch flips faster, and stays flipped longer. It takes me more energy and effort to pull him back to equilibrium when he has a problem.

 I am on a waiting list for one behaviorist who takes our insurance and we are waiting for our application to be processed for additional funding to call the second behaviorist in the area. I did find a counselor who does play therapy and am on her schedule next week, so I was encouraged by that. 

11 hours ago, Terabith said:

Because he just is.  Sometimes there's no reason.  Sometimes 2+2 equals a banana, like they say on West Wing.  Sometimes it's because the weather is changing and they're bothered by the barometric pressure or because the increased sensory demands of winter clothes exceeds their ability to cope or because they're getting sick or because they're allergic to mold or because they saw a commercial at a restaurant that scared them or because he's having absence seizures or because the days are getting shorter and he's not getting as much exercise or because Dad's work schedule has thrown something off or.....  There's not necessarily a reason.  We want a reason because we want to fix it, stop it, have control.  And most of the time, it just sucks.  I'm sorry.  

Yeah I've had all these thoughts - the pressure, the sensory of his clothes, his allergy to mold that we're still fighting, the shorter days, dad's schedule, etc. The absence seizures - how would I even see that or know that? But yes I do want to fix it and stop it and have control. Realizing that might be one of the more important aspects of figuring it out how to handle each day, since being aware of my own reasons for my own behavior is just as helpful as understanding his behavior.

  • Like 1
Link to comment
Share on other sites

I'm not sure if this has been mentioned yet in the replies, but another thing to keep in mind is that, in addition to any diagnosis a child has, the child is still a child, going through phases. My NT kids have seasons where they are just more difficult emotionally and behaviorally. So for kids with additional challenges, sometimes those swings into a difficult season can be just due to the normal fluctuations of development that all kids experience. The behaviors and emotions may be more extreme and hard to deal with, but the reason for the swing may be due to typical development patterns and not necessarily the special needs.

So the helps like diet or medication or therapies may still be having an effect, even if the behaviors take a downswing.

The best illustration I can think of for this this morning is that DS14 has Tourettes, and sometimes his tics are worse and sometimes they are better. His medication is helping all the time, but he still has swings, because there are outside factors, such as stress and reacting to novel situations or getting less sleep, etc. Sometimes we can pinpoint what is making things worse, and sometimes we can't. But the medication remains constant. So in your case, I would say that you could expect other things to change, even when you keep the diet constant, and it doesn't mean that the diet itself is ineffective. But we also tweak the meds, and you can tweak the diet. (I know that diet was not your main point, but I'm using it as an example).

  • Like 2
Link to comment
Share on other sites

While the focus has been on Lymes and Borrelia bacteria. This is just one possible cause of his temporary Bells Palsy?
As various types of bacteria or viruses could have caused it?
The nerves that control all of the muscles in the head. Extend from something at the base of the brain. Called the Trigeminal Ganglion.
Something unique about this Ganglion, is that various types of bacteria and viruses.  Use it to reside in, while they are dormant.
So that incidence of Bell's Palsy, was very possibly caused by activation of bacteria or virus.  That is resident in his Trigeminal Ganglion.
Where different bacteria and viruses, have different paths of progression ?  With a variation of symptoms, between the initial onset and then the re-activation.

Early identification is difficult, as often their isn't enough anti-bodies to the bacteria or virus yet.  Which makes early diagnosis difficult.
Though the specific symptoms, can be an indication of what type of bacteria or virus being the cause?
But you just made a post, where you mentioned he has an 'allergy to mold which you are still fighting'. Which is an allergy to 'volatile compounds' that molds produce.

Though his allergy to mold, could be the underlying issue?   Going back to the relationship between Bell's Palsy and the Trigeminal Ganglion?
Something unique about the Trigeminal Ganglion?  Is that while the Brain is protected and insulated by the 'Blood/Brain Barrier'. 
Our 'Olfactory Bulb', which sits behind our nose and what detects odors.  Has nerves that connect directly to the Trigeminal Ganglion.

Where research has identified, that bacteria and viruses can travel up the nerves. From the Olfactory Bulb at the back of the nose. Into the brain and Trigeminal Ganglion.
But research has identified that 'Toxins' (volatile compounds) can also travel along the nerves.  So that it possible that his 'mold allergy' could be the underlying issue?

  • Like 1
Link to comment
Share on other sites

I try to think about things that I can control, and things that my child can control.

I can control things like schedule, routine, environment, and my own behavior.  These are really important things.  I do have a lot of power to set the stage.  

But I don't and can't control my child's actions.  It's not my responsibility or my fault, on a personal level, as if specific actions are personally attributable to me.  

I think I do a lot to shape the big picture.  

But on specific days something happening?  I don't "cause" that.  Now -- okay, yes, sometimes I cause things. 

But the thing is too, some things aren't avoidable.

The measure of success isn't "nothing happened."  

For example -- with OT -- for my son when he was younger, anything new was stressful to him.  He did not like it.  

Is the answer to never do anything new with him?  No.

Is the answer to try my best to support him?  Yes.

Is the answer also to accept that when he is doing something, anything new, then he is likely to have a hard time the first few times, and that this could mean difficult behavior?  Well, this is how it worked out for me.  

It's different if you start to have an explanation (like I started to have an explanation of "new things").  Then there is more of a sense of "well, yes, it is very difficult right now, but there is a lot of hope that one month from now this will be much easier."  It is a lot better mental place to be, than not having a mental explanation like that where things are likely to get better.  Or, where there is something like a bad night's sleep or a poor start to the day, which are rough but also explainable, and leave hope for a better night's sleep or a better start to the day on the next day (or the day after that).  

I think it just takes time to figure things out, and then new things do come up!  

But it's not your role to prevent any challenge to occur that would be stressful to your child.  

There is a balance.  

Too much stress is NOT GOOD.

But avoiding all stress is not good either, because it is part of life and part of doing new things.  

For my son, for the most part, he would have outsized reactions, but his reaction did not correlate to his stress.  He could have an outsized reaction but then recover quickly.

I have another child, my older son, who is an "internalizer" (aka he does NOT act out unless he is at an EXTREME point).  If he has an outward reaction of any kind, he is VERY STRESSED. 

But for my younger son, he just would have outsized reactions because he was not good at controlling his behavior.  But then he could come back and be doing a lot better, after a fairly short period of time.  

But for my older son, a much smaller reaction would leave him stressed for much, much longer. 

So I think -- it is very counter-intuitive.  You have to look beyond what a level of behavior means in general sometimes, and look at what it means for your child. 

It just takes time, which is hard.  I think there is a lot that just has to be figured out by doing it and trying different things.  

I wish there was an easier answer! 

I think there are a lot of messages about mothers being responsible for how their kids act, and their emotional well-being, and some of it is not realistic, it's not realistic for a mother to have so much control of a child.  

Even with babies, there is a message out there like it's the mom's fault if the baby cries.  A good mom has a baby that cries less, a bad mom has a baby that cries more.  

It's just not reality.  

I try really hard to judge my parenting by *my own actions.*  Not as much now as my kids are all doing well right now, lol!  But when they were younger -- honestly I could be doing really great parenting, but not having a corresponding result from my kids.  Well -- I was still doing a lot of great parenting.  

There's still a lot of room to try and find better ways and address things, but that is just not possible to happen instantly.  And even then, kids are still going to be kids, and have their own personalities and ways they react to things, and some things may still be harder for them, and other things may be easier for them.  

  • Like 4
Link to comment
Share on other sites

I also used to have a lot of ethical dilemmas, like ----- where is the point where I decide something is ultimately good for my son, and where is the point where I say if he doesn't like it then he doesn't have to do it?  

I think those are hard and worth discussing with other people.  

  • Like 2
Link to comment
Share on other sites

So two updates - the speech eval actually DID show a significant discrepancy in social pragmatics. He's able to talk and understand like an 8 year old but functions socially at less than 3 years old. 

Secondly, we found a pediatrician that I think is going to be a game changer for us. she has a 20 year old son who was diagnosed as autistic at something like age 10. So she gets both where I am, and understands not having those super obvious symptoms that get caught at 18 months. She asked questions that no one else has thought to ask, and UNDERSTOOD. She was so encouraging and told me bits of her story to help me understand where she comes from and how she really gets it. She's given us several options for anxiety, and is completely AGAINST me putting my son in the public school system. She said even the most well done autism programs in this area are not as good as what I will be able to do with him at home. 

So anyway, just wanted to give that quick update since you guys have been such a huge support for me these past few weeks!!

  • Like 6
Link to comment
Share on other sites

Score!! So is she going to get you referrals and more services! The SLP sounds like a win. You have an OT? Behaviorist? Yes, you would expect him to begin failing pragmatics tests around this age, given his diagnosis. Was it the CASL or the SLDT? Don't let the stop there though. SLPs like to treat pragmatics, because it's fun and easy to prep. Compel them to do detailed testing on expressive language and narrative language including syntax. That's the only way to catch the holes, and these are the harder holes that are much more custom that SLPs don't like to wrangle with. We're getting ready to fire our SLP over it, because she was standing in our way.

But now, while she's in the testing mood, keep the SLP testing. If she doesn't own the TNL or isn't skillful in doing an informal narrative assessment, that's a place to start. Personally I don't see why they do the informal when the TNL is so good. It's all about the money. And the SPELT (structured photographic expressive language test) was eye-opening on us. There's no multiple choice like the (stupid stinking hear me rant) CELF, so you can finally bust through a bright kid's ability to script and follow models and actually find the holes.

I'm thinking about looking for a new doctor for ds, but I don't now if I have the heart to deal with it. Is this new doc of yours kind of normal or is she the 30k labs, sell you supplements kind? This one doc that is popular in the big city is kind of controlling. if you do't do the labs he wants right away, you have to start all over with another multi-month wait for appointments. And apparently he's big on $$ supplements. People rave about him, but I don't know. I've already done a lot of that legwork, sigh.

Edited by PeterPan
Link to comment
Share on other sites

On 10/25/2018 at 4:29 PM, PeterPan said:

But now, while she's in the testing mood, keep the SLP testing. If she doesn't own the TNL or isn't skillful in doing an informal narrative assessment, that's a place to start. Personally I don't see why they do the informal when the TNL is so good. It's all about the money. And the SPELT (structured photographic expressive language test) was eye-opening on us. There's no multiple choice like the (stupid stinking hear me rant) CELF, so you can finally bust through a bright kid's ability to script and follow models and actually find the holes.

I'm thinking about looking for a new doctor for ds, but I don't now if I have the heart to deal with it. Is this new doc of yours kind of normal or is she the 30k labs, sell you supplements kind? This one doc that is popular in the big city is kind of controlling. if you do't do the labs he wants right away, you have to start all over with another multi-month wait for appointments. And apparently he's big on $$ supplements. People rave about him, but I don't know. I've already done a lot of that legwork, sigh.

Actually the SLP was more the "good I've passed him and I recommend a social group for the social stuff" kind of person and didn't want to do any additional testing even when I specifically asked about it. So instead we are doing Braidy and Visualizing and Verbalizing and trying to decide on something for social pragmatics and find a group to get him into in addition to 1-1 OT and play therapy.

The doctor is a nurse practitioner in a nearby town and was recommended to us by our functional pediatrician as someone who can do the "pediatric mental stuff" better. She listened to my story, had the opinion that the additional lymes test is not necessary, gave me a 4-tier plan for helping his anxiety, starting with a supplement that she doesn't sell, but knows it's worked for some kids (and I found it for $15 for a month's supply online), and was more impressed at the diet we have him than interested in adding to it with supplements/restrictions. She struck me as more of "I'm part of your team" than an "I'm in charge of your son's health" type of person. 

  • Like 4
Link to comment
Share on other sites

1 hour ago, mamashark said:

So instead we are doing Braidy and Visualizing and Verbalizing and trying to decide on something for social pragmatics and find a group to get him into in addition to 1-1 OT and play therapy.

Boom, that's awesome! So Braidy means she saw the narrative language issues already and you don't need the TNL. She's doing the intervention for it. Sounds like you got somebody on the IN!!! 

Ok, I'll mess with your head on the social pragmatics. I think (and I'm very pissy opinionated here) that SLPs go to a Social Thinking workshop or a Zones workshop and get all psyched and they tell people what to think. So I had this SLP working with my ds (and yes, I'm about to fire her butt too, I'm being more patient with her than the Draconian OT, but whatever), and this OT, I kid you not, literally had my ds SCRIPTING for emotions. I asked him how he felt, and he goes into his total falseto, high voice that he used to script with a lot, and he says "I'm content!!" I'm like (remove expletives I didn't say), what in the WORLD has that SLP been doing? She was showing him videos and telling him what the people were thinking and what the words were. SMACK.

So you tell me. Do we want our high IQ kids to be TOLD what emotions are or do we want them to DISCOVER what they are? Ba-da-boom! Obviously the latter. But how do we engage this marvelous process where a kid eventually figures out the language for himself? Easy, we piss off the SLPs and go get Kelly Mahler's new Interoception curriculum that isn't published yet. :biggrin: Phase 1: what is your body doing; Phase 2: what are the words for what your body is feeling (affective and hypostatic emotions); and Phase 3: what are the people in these pictures, videos, real life feeling in their bodies and what are the words for that?

See how phase 1 and 2 would feel VERY NATURALLY into phase 3? Now granted, she did this with kids with a 150 IQ. She probably had some really IQ-typical kids too. Am I saying she has data to show it will work with all IQ of kids? No. But the SLP who is teaching my ds to memorize and script in the name of social/emotional awareness is working in an academic setting where at least 50% of the kids probably have ID. It's pragmatic and gets the school want they want, kids who comply. 

So can I *guarantee* it will work to go through phases 1-3 and that at the end he'll be where we need? No clue. Mahler is getting ready to publish data that was gathered using the materials she's now publishing. I just know I DIDN'T LIKE what I saw from the SLP teaching my ds to SCRIPT and I can't think of any way to skip interoception and have it not basically be telling and scripting, sorry. 

We live in a time of blossoming options, where I think we have some room to be a bit idealistic. Just my opinion.

Link to comment
Share on other sites

Play therapy is the awesomest thing ever. Our behaviorist does a lot of play. Do all you can get funded, more the better. Let them weave in a lot of those social goals like conversation, etc. It will be more natural. Play is going to be where it's at in order for him to have friends, etc. 

I really like the Color My Conversation kit, and it would be so easy to do at the age of your ds if he seemed ready. It has a ball, stepping stones is very cognitive. The SLP we're using just wanted to do popsicle sticks (Michele Garcia Winner, Social Thinking), and they are just so limited, not everything he needs. I swear I just, well people don't think. But you know what I like is that your SLP is clearly THINKING. She's pushing envelope and learning lots of strategies and learning WHY she needs them. So that to me means she might be cool when you say hey someone mentioned this, would we want this, could we get hours for this... Like don't bog her down and ruin a good thing, but if you've got more hours and more providers to get it done, she's so right there's a ton of good you can do.

  • Like 1
Link to comment
Share on other sites

2 hours ago, mamashark said:

The doctor is a nurse practitioner in a nearby town and was recommended to us by our functional pediatrician as someone who can do the "pediatric mental stuff" better. She listened to my story, had the opinion that the additional lymes test is not necessary, gave me a 4-tier plan for helping his anxiety, starting with a supplement that she doesn't sell, but knows it's worked for some kids (and I found it for $15 for a month's supply online), and was more impressed at the diet we have him than interested in adding to it with supplements/restrictions. She struck me as more of "I'm part of your team" than an "I'm in charge of your son's health" type of person. 

Wow, that sounds like it went really well!! And a staged plan for the anxiety seems really wise. So I'm curious, what was the supplement? GABA? 5HTP? Just totally curious, lol. We're using 5HTP because of genetics, so I'm a big fan of running genetics. But sometimes it's just something that is known for working.

Yeah, if someone will collaborate, that's helpful. I'd probably be a lot more happy with that. There's a doc in the big city popular for autism, but I think he'd just, well I don't think I want that. Docs kinda don't like it if you call 'em stupid. Not that I would, but I've been around the block and have my own opinions, lol. I'm hard to work with maybe. If you want a laugh, I actually go to a doctor now, after not having gone for 15+ years, and he and I get on great. I have no clue why. :biggrin:

Edited by PeterPan
Link to comment
Share on other sites

37 minutes ago, PeterPan said:

Boom, that's awesome! So Braidy means she saw the narrative language issues already and you don't need the TNL. She's doing the intervention for it. Sounds like you got somebody on the IN!!! 

Sorry, I wasn't clear - she literally didn't want to work with us. Gave us the test results and said let me know if you have questions and refuses to do more with us. I figure the group I find (I have a couple leads) will need to have SLPs on staff so that I can find someone whose willing to work with the social stuff and not just do it at home... I'm doing Braidy, both with him and my dyslexic daughter, and while she's probably not needing it, she's loving it, so we're going with it. And I have an old SLP friend in another state who loves Braidy too so I know I can't go wrong there.

41 minutes ago, PeterPan said:

I just know I DIDN'T LIKE what I saw from the SLP teaching my ds to SCRIPT and I can't think of any way to skip interoception and have it not basically be telling and scripting, sorry. 

I have to agree with you here. I want my kids to learn to think for themselves, not just script the language back that they are taught to say. So yes, I'm very excited about the curriculum coming out, and just praying I can afford it when it does or else I'm going to be pulling from the emergency fund and begging forgiveness from my husband...

37 minutes ago, PeterPan said:

So I'm curious, what was the supplement? GABA? 5HTP? Just totally curious, lol. We're using 5HTP because of genetics, so I'm a big fan of running genetics. But sometimes it's just something that is known for working.

L-THEANINE is what she recommended. I tried GABA with him and it did no good at all. I have personally tried 5-HTP and I reacted to it (my nerves became hyper sensitive so that a simple scratch would BURN) so from that genetic standpoint you mentioned, I'm leary of trying it with him. 

  • Like 1
Link to comment
Share on other sites

6 hours ago, mamashark said:

she literally didn't want to work with us.

huh????? You're joking, right? I've seen an SLP like this online who only does evals now, no private therapy. Are they a professor or something like that? 

Well you go girl. That's sweet that he's young enough to do the Braidy lessons!! They looked really charming. Also, make sure you notice the developmental sequence of narratives from MW and pay attention to it. Don't push till they sound unnatural, but my two cents is to focus on those and benchmark and go ok he's doing that, it sounds good and natural, and then keep building. TOO MANY kids with ASD memorize all the stupid parts and still can't pull it into a whole. Don't do that. Teach the parts pesky slowly and actually build real narratives the hit where he's at developmentally. 

Yeah, l-theanine is known for anxiety, so that seems like a reasonable try. Interesting.

Well sounds good! So she recommended all this stuff but didn't have any names to help you build a team? Sigh. Well keep working it, finding names.

Link to comment
Share on other sites

4 hours ago, PeterPan said:

huh????? You're joking, right? I've seen an SLP like this online who only does evals now, no private therapy. Are they a professor or something like that? 

 

I wish. She's not a professor, she's part of a physical therapy office and works with all kinds of kids with speech delays. She paired really well with my son, I was able to leave the room without him having a problem during the eval, (which is pretty huge for him with a new person) and she claimed to have been "looking" for something that she could service him on because he "was so sweet and nice and I just would love to have an excuse to work with him." In the room, after the eval, but before she scored him, she was telling me he was fine. "I've even written down several things he said that were above his age norm"

I challenged her on several points - things that I saw in the room with her that I know to be an issue - and she acted like, "oh, well, I guess I did have to prompt him more than I might have expected to for his age...but I still think he'll score just fine on everything". She insisted that every issue I brought up with language at home or in public was "behavioral" not language related. I asked her about narrative language, asking her to evaluate him on that and gave her specific examples of time when he can't tell back things (like ever), and she told me again it was behavioral. 

In her "professional opinion" (which, btw, the way she spoke the phrase several times, her posture changed and voice changed, it sounded very scripted, speaking of scripts, so as to avoid me arguing with her) he has all the language and comprehension in tact to be able to handle anything he ever wants to say, anywhere. The rest is behavioral. This is why I was shocked and actually excited when the test results came in the mail and showed his social pragmatics so low. I was like, see, I wasn't wrong there!! Her only "professional recommendation" listed on the report was to find a place that does a social thinking group. 

I really am not terribly impressed with the social thinking curriculum, though, because he went through that over the spring and summer and maybe it was the lady who led the group but when I would ask targeted questions that were relevant to his handling of group situations that create anxiety, she couldn't answer. It all seemed to be focused on the kids who "act up" and my kid is the kind who shuts down. My kid, in a social situation, is the kid that every teacher LOVES because he is too terrified to speak up, will jump to do everything asked of him immediately, and will never speak or act out of turn. And the one other kid in the social thinking group with him was the act up type, and always off topic, and his mother was almost doing more to keep him in line and on task than the group leader. Anyway, his experience in the social thinking group was entirely before this CELF test so the social pragmatics score right now is AFTER the social thinking group curriculum. If I judge that the way public schools judge things, then that was a big bust.

I picked braidy because I didn't want to assume that I could skip that step, I figured a few more dollars to start there would just be insurance that I was able to build his foundation from the bottom up. 

I was looking at color my conversation and am really impressed at how well it is setup and how all the parts are so integrated. I have to think about how to raise the motivation for him to start it, because getting into new things and doing it with his siblings, which is what I probably will want to do in order to make it more of a group feel, are always really difficult for him. 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...