Talk sanity to me on evals

[Crimson Wife]

 

On another note, I would focus on confirming or ruling out autism along with the Dyslexia. When autism is at play it can become a whole different ballgame how you approach things with your son.

 

Late to the party because I've been on vacation visiting my folks but I agree with this. If he is on the spectrum, then the sooner you can get him into ABA therapy, the better.

 

My little one has seen more language improvement in 3 months of ABA than she did in a whole year of traditional speech therapy. It is really amazing to see, and I only wish it hadn't taken us 2.5 years to get approval for ABA.

 

The effectiveness of ABA is why I'm strongly encouraging oldest DD (who wants to be a SLP) to consider working for a couple years as an ABA therapist between college and grad school for SLP. I really think having experience doing ABA would make her a significantly better SLP.

[PeterPan]

Elizabeth, first of all my apologies! I had skimmed through some of the posts due to time constraints and got the impression that you son was advanced in math but just showing certain areas of struggle that you would just need to isolate and tap into like I did with my oldest boy.

 

After you posted about your suspicions about possible dyscalculia (bear in mind that this was the first time I looked up dyscalculia) I read some of your other posts in other threads also. While I have not dealt with the same issues I just wanted to give you something to think about with the c-rods. You mentioned (I believe I read it in another thread) that your son is not connecting numbers to quantities. Personally, I would not recommend c-rods in this case. The merging of the quantities into one rod may work against what you are trying to do, not for you.

 

Also, have you checked out the More Starfall website? Does your son do well with e-learning? The More Starfall resources are wonderful I find (I just renewed our subscription recently) and my son uses it often. It is one of the many resources we use but I find it a good one. 

 

Anyway, just thought I would mention that and once again my apologies for the misunderstanding. I was going to delete some of my comments but you had already replied so I figured it made no sense.

 

:grouphug:

There's nothing to apologize for!  I don't know what's going on with him with math.  I know the materials meant for dyscalculia (Ronit Bird) seem to click with him and get his brain working in a good way.  They make really small steps, steps that he seems to need.  He's not ready for any conventional math using text/print.  We've spent months doing the dot patterns ebook from Ronit Bird, and she does a lot of intricate lessons, with teeny tiny steps, getting them able to visualize a quantity (1-9 dots) and connect that quantity to a word.  I'm saying the idea of three-ness wasn't there.  We did the first lesson of RightStart A, and he just sat there looking at me with this totally blank face, like I had asked him to decipher the Rosetta Stone.  

 

I worked in K5 all through college and I've never seen anything like it.  To me that's not a developmental thing, which is why I'm assuming (incorrectly or not) it's dyscalculia.  

 

I share your concern over c-rods, and they really wouldn't have been my first choice.  However the Ronit Bird dot patterns ebook has been SO careful about visualizing and conceptualizing, and the steps have been SO perfect for him and fitting for him and able to get his thought processes going, that I've decided just to trust the next book of Ronit Bird and roll with it.  It may be she has unusual ways of using them that are not the norm.  She has been VERY particular about every single step of the thought process and having the student able to understand and see it the way she wants.  Each step sets them up to understand the next step.

 

Honestly I haven't read through the c-rods book yet.  I'm so global (you know me), but once I do that I get bored and jump and try to go too fast.  Working with him on math is this exercise in EXTREME PATIENCE, oy.  My own personal mental discipline has been not to read ahead.  I don't think I could handle it otherwise.  (It would drive me batty with the slow pace.)  So for me, if I just let each day be new and discover the new step with him, that works for me.  Sounds silly, but that's what I'm doing.  I call it embracing the pace.  I'm this rabbit on speed, and he's a tortoise in a swamp on some of these things.  It's very, very challenging for me to slow down and embrace that, and that's how I do it.  So I haven't looked through the c-rods book yet to know what she's doing.  It's probably super cool and different from the norm.  What she has done with dot patterns has, honestly, been BRILLIANT.  I'm really excited about it. You sort of *have* to stay excited about what you're doing, kwim?  So I try to embrace where he's at and just enjoy it.

[PeterPan]

Late to the party because I've been on vacation visiting my folks but I agree with this. If he is on the spectrum, then the sooner you can get him into ABA therapy, the better.

 

My little one has seen more language improvement in 3 months of ABA than she did in a whole year of traditional speech therapy. It is really amazing to see, and I only wish it hadn't taken us 2.5 years to get approval for ABA.

 

The effectiveness of ABA is why I'm strongly encouraging oldest DD (who wants to be a SLP) to consider working for a couple years as an ABA therapist between college and grad school for SLP. I really think having experience doing ABA would make her a significantly better SLP.

I really don't know.  He's receiving PROMPT, which is the most effective therapy there is for the problem we know he has (verbal apraxia).  We don't know about the spectrum stuff.  I'm keeping a log and trying my darndest to get him evals.  I'm trying, kwim?  I don't know anything about ABA (other than references on the web).  I will say that if you met him he's more verbal than ANY of his age mates in the classes he has been taking this summer.  The therapy he has been receiving is working, so I really don't have any complaints in that respect, kwim?  

 

How does ABA help speech?  By improving willingness and comfort with speaking?  Seriously, he's the total opposite of that.  He talks NON-STOP in his classes at the Y.  

 

Lecka has mentioned ABA in relation to learning how to work with him better. (shopping, etc.) We're pursuing the evals, that's all I can say.  I would say that what we're doing now is working but that we have to work a lot harder with him than you would with a typical child.  Or I just worry a lot.   :svengo: 

 

So I'm not opposed to ABA or other interventions.  I just have to let the eval process work out.  With the autism scholarship in our state, if we were to get a label like that (which is not guaranteed, his SLP thinks it's a no and even the moms of aspies who know him won't say definitively), we'd have the funding and would do what they said.  Sigh, I'm trying.  But look at the thread.  I can't even settle on a psych and know I've got the right person, lol.  Like Sandy says, it's possible to have a lot of spectrum-ish behaviors and get told you don't cross the line into autism and that it's all due to EF.  That could seriously happen.  This psych is an EF expert, a dyslexia expert, and has an interest in pervasive developmental disorders.  If I knew flat-out it was spectrum, there's a swankier psych up in Cleveland who gives 17 page reports.  I don't know, and I can't afford a $4K eval.  Even the $2100 one is pretty rough.

 

So anyways, back to your question.  Honestly, he has a TON of speech and no problems using it.  I don't *think* he needs ABA for that, and it has never been suggested by his SLP.  I'm open to ABA if it would help in other ways, but we just have to go through the steps, getting the evals.  When I first talked about evals years ago, I told my dh we'd wait till 7.  It's only in the last few months I've gone into "I can't teach this without some help" mode and in the last couple weeks that it has gotten really intense.  I've got conflicting opinions from everyone around me, with some people saying there's nothing going on, it's all my fault, he'll outgrow it.  Others are saying go to a bigger city and get what Sandy calls the HQ-NP eval, even if it blows my budget.  Others are telling me psychs overclinicalize normal genetic diversity and to embrace him and use alternative companies (NILD, etc.).  And these are major voices in my life, not just piddlers.  And I just stand here saying PLEASE, will somebody sort it out and help me and tell me they're not gonna take $2K of my dollars and leave me with no info.   :nopity: 

 

This psych promised me, on a stack of Bibles and the sake of his reputation, that he WOULD be able to sort out what is developmental and what is disability.  He seemed very confident of that.  That's all I need right now. And he can do it for $200 an hour (private) rather than the $350 an hour the hospital psychs charge.  I just hope it's good enough.

[Lecka]

Two of my son's ABA therapists are/have been Juniors or Seniors majoring in speech therapy.  

 

Our (military) insurance requires 60 hours of college.  The other main insurance that provides services here does require a college degree.  

 

The agency (ABA) we are with also has respite providers that they train, but I think most of them do have 60 hours of college or experience working in a school classroom (as an aide or para).  

 

A lot of speech therapists can work in the school district their junior/senior year, too, my son's pre-school had some, and my older son's elementary school has some working as paras.  

 

So anyway -- your daughter might not need to wait until she has graduated to get experience.  

 

One of his home therapists is starting grad school this year in speech therapy.  She is going to have very limited time to work with him in the first semester, and the second and third semesters she will have internships and not have any time to work besides that.  I have met the internship students at my sons' IEP meetings, there with the speech therapist.  She will have one in a school and one in a hospital.  

 

But anyway -------------- the one who is going to grad school in speech therapy, thinks that her work experience with my son's agency and the recommendation letter she got from there, helped her get into graduate school.  The one with him now is also hoping it will help her get into graduate school.  It is a "200 people apply for 18 slots" situation in our town (with the local state university).  (She is applying to work in the public school system, too, during her senior year, to have more experience.)  

 

I have been really pleased with both of these women, they are both very good.  

 

It may be that a lot more places/insurance do require a full college degree. But our area is one where 60 hours is enough for several things in the schools and privately.  

 

 

[Tokyomarie]

Elizabeth, it sounds like this second psych should be a good one for this first eval. As has been said, you may not get every question answered. And labels aren't THE most important thing you will get from an eval. What you want is insight into the way your son takes in information, processes it, remembers it, and uses it to interact with others and show them what he knows. You want to know what his strengths are and what his weaknesses are so you can tailor your interactions with him and your education to improve weak areas and take advantage of strong areas.

 

Something that might help you is to make a list of your concerns, prioritize them, and turn them into questions to be answered. If you have concrete questions you want answered, in order of priority, it can help you focus on what you want most from this evaluation.

[Lecka]

Honestly I knew he had autism when I went to the pediatrician for the referral, and there was only one place we could go.  I did not have to make all these decisions!!!!!!!!!!!!!!!  

 

It sounds like you are doing a good job with it, it is a major undertaking!

 

There is something about our local situation.   My insurance will only cover ABA, so a lot of programs are considered ABA for our purposes.  It is really very broad.  If there is a program and they can incorporate taking data into it, and if the program has a research base, and if they can follow a behavior plan (positive behavior supports, responding to problem behavior in specified ways) then it seems like it is able to be called ABA for the purposes of insurance coverage.  I do not know if that is the case in places where insurance will cover other things.  It is our situation locally though.  

 

"Our" ABA is not "we are going to go through a training manual published by UCLA/Lovaas back in 1980."  That is just not what ABA is here.  But on the Internet, sometimes that is what ABA is referring to.  But that is really not what we are doing, though some is the same.  But for some comparisons of different types of therapy, we are able to have parts of other types of therapy with my son, they have become research-based and can be incorporated.  Something like that, anyway.  

 

Anyway -- it is hard to find information about ABA on the internet and have any idea if it will be what might be done locally as ABA.  Here my son has been doing some certain things, but other kids also doing ABA are not doing the same programs as he is.  It is all really individualized to what different kids need.  

 

[Crimson Wife]

 

How does ABA help speech?  By improving willingness and comfort with speaking?  Seriously, he's the total opposite of that.  He talks NON-STOP in his classes at the Y. 

 

So anyways, back to your question.  Honestly, he has a TON of speech and no problems using it.  I don't *think* he needs ABA for that, and it has never been suggested by his SLP.  I'm open to ABA if it would help in other ways, but we just have to go through the steps, getting the evals.

 

DD actually has an above-average vocabulary, which is why her most recent private SLP discharged her in June of last year. We were on a waitlist for another clinic but just had gotten a slot when we changed insurance and could no longer use them. The flip side was that the new policy was subject to the autism mandate so ABA was covered and we decided to try that instead.

 

ABA focuses a ton on the pragmatic/social interactive use of speech. That was where my DD really struggled. She could label pictures with the appropriate word up to a fairly advanced level but when it came to actually holding a back-and-forth conversation, she couldn't do it. ABA has helped her to be able to put into practice the words she knows in a meaningful way. They do work on some of the same goals as her old SLP was like pronoun and preposition use but mostly they work on teaching her how to interact verbally with others.

 

SLP's are generally not trained in ABA, though some ABA therapists do have a background as SLP's (it's one of the degrees that qualifies someone to get board certification).

[PeterPan]

Crimson, that's very interesting.  Thanks for enlightening me!  I'll have to watch him a bit and see where he falls with that.  They actually *do* incorporate social skills and pragmatic speech into his ST, because honestly it's usually a problem with kids with apraxia. So the social skills stuff are already woven in.  Yes, she tests his grammar, etc. as part of her yearly testing.  I guess we'll see what the psych says when he does the evals.  That will be a more objective take.

 

Lecka, that's for the background on the ABA.  I wouldn't have figured that out on my own!  

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[Lecka]

Within the next year my son might be starting a program where he learns to respond to a statement with an on-topic question.  For him it will be a building block to be able to have back-and-forth speech.  His therapist thinks it is likely to be a good choice for him, looking forward.  He is not quite ready, I am impatient, lol.  

 

Some kids who do this program do not have language problems like he does, but also don't know how to ask an on-topic question as a turn in a conversation.  But who would do well with a program with explicit instruction and visual supports.  

 

But that is an example of a speech/language/communication goal that could be an ABA program/goal.  "The child will be able to respond to a statement with an on-topic question."  It probably could be a speech therapist's goal, too.  In ABA there will be data taken on his attempts and whether he needs to be prompted.  They will also be prepared to respond to any behavior according to his behavior plan, and to offer positive behavior supports, and be knowledgable about ways to make it more fun and enjoyable for him in different ways.  But it might be pretty similar as if a speech therapist had a similar goal.  Sometimes it is just the individual person and how good they work with a kid.  Sometimes it is good to have two different people work on the same goal, b/c it is more practice and just slightly different practice, and can mean it is more effective, b/c it is a little broader and gives the practice of being with two different people, which can be good in of itself sometimes.  Locally -- with ABA there is going to be work to make sure that a skill generalizes to different settings, b/c that is often a problem.  I would want this addressed ---- to keep from a situation where "well, he can do it with the speech therapist in the speech therapist's office, but I am not seeing it transfer."  But a speech therapist could also take steps to increase generalization, or give advice to parents.  I know sometimes it does not transfer to natural settings with ABA either, but there is a lot in place to help skills transfer to natural settings.  In my son's it is called "NET" for natural environment training, and it is basically opportunities are created to see if he will use his skills in a natural setting.  It is a planned and purposeful thing in its way, even though it is also like "let's go to the park and see if he will ask this question with no prompts if we are there and it would make sense for him to ask it."  If he doesn't use his skill in the natural environment (aka real life) then his therapist will make some plan to provide some scaffolding or support or something, so that he can begin to use his skill, and then the scaffolding is slowly removed, then a new setting can be tried to see if can do it in the new setting with no support.  In practice it is like -- "he did good at the park, let's see how he does at the zoo." 

 

I am really impressed with the language teaching my son has gotten.  He does Verbal Behavior which is a kind of ABA for a lot of his language.  It is wonderful for him.  But he needs a lot of help with every part of language learning.  

 

Oh, from my understanding, this is examples.... "I like dogs."  "Have you ever had a dog?" would be an on-topic question.  "What is your favorite kind of dog?" would be an on-topic question.  "What other animals do you like?" would be an on-topic question.  I think my son is going to start with just a few rote fill-in-the-blank response sentences, but where he needs to respond appropriately, and then work up from there.  I am SO anxious for him to start this program.  But -- still, I am totally happy with where he is, too.  It will just be nice when he gets there.  He really likes to talk and interact with other people, he just does not have the language skills to do much more than point out things he sees and make statements about things he sees, and then respond to the easy-so-he-can-answer on-topic questions that other people ask him.  "Look an airplane."  "Is it in the sky?" "Yes."  He can have back-and-forth like that and it makes him so happy.  

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[PeterPan]

Canucks, I appreciate you sharing that, because what you all are dealing with makes more sense to me now.  His apraxia is totally different.  His grammar is great and at the high end of normal (like 99th percentile last time we checked) for his age.  He has no problems with back and forth conversations, and tells stories with ease.  He just gives odd answers sometimes or doesn't respond to you at all.  But no, in general he doesn't have the problems you're describing.  I'm certainly open to anything the psych says to do, but that particular issue isn't a concern right now, I don't think.

 

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[Lecka]

In my local situation -- the ABA therapists (like -- the college kids, not the supervisor) are able to take my son on outings and go into all kinds of environments with him.  They have taken him swimming, to McDonald's, to the grocery store, and gone with me to the zoo and local park.  One also took him to her mom's house and let him ask to play with her mom's dog and he got to pet her dog.  

 

It is good b/c if he wants to go to McDonald's and they have some programs to go through with him, he will be very motivated to work hard so he can ride in their car (which he adores) to go to McDonald's.  There is a chance to work on his "walk and wait" program and a lot of his listening and following directions stuff.  

 

It also makes him really like his therapists, b/c they are cool people who take him to do special things.  

 

When I was briefly taking him to a center, there was not the same opportunity for generalization, and they had a difficult time building any rapport with him (they failed and I took him out).  The rapport that comes from getting taken for a car ride and to ask to pet a dog ----- it cannot be replicated in a center-based setting for my son at this point.  It was really special for him, and other little outings have been special for him.  Taking him to an office with a few toys and a not-as-good-as-the-park-I-take-him-to-daily sensory/play area just can't get to the same place with him.  Also, the person who took him on this outing is just so good with my son, really likes him, and has a great rapport with him ---- and he works very hard with her.  The opposite of the situation when he has no rapport and doesn't want to be there.  

 

But honestly, in a different situation, it could be the speech therapist who has better results and the ABA who is lame.  But locally I would recommend to a lot of people to use the agency I use, though there are times when I think it is not the best choice, too, and the local center is better for some kids and situations.  

 

I have also been with some speech therapists who seem like "okay, the 30 minutes is up, whatever."  I have yet to have contact with an ABA person like that.  I am sure they are out there, though.  I have had contact with some wonderful, committed speech therapists, too, but they have not focused on my younger son's level of issues -- but I am sure there are speech therapists who do.  

 

For the kind of ABA my son does (Verbal Behavior) an important part of it is building a rapport between the therapist and the child.  It is something they formally keep track of based on things like whether or not he will approach them on his own, and whether or not he runs away when he sees them.  Those are observable data for them to see if they have a good rapport (good old measurable, observable data in ABA).  There are a lot of ideas for building rapport and they see a lot of their job as building rapport.  If they spend a session on building rapport that is legitimate and desirable.  Locally -- what can I say, I have taken my younger son to people who cannot engage him or establish a rapport with him, and it is the worst.  

 

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[Arcadia]

I've wondered that. I figured we'd just get the breathing working right and it would all be fine. I never knew it could take so long and continue to be challenging to acquire through all the lessons.

 

Is it individual or group? My older boy refuse to get his face wet so couldn't swim after two terms of weekly lessons. My hubby had to teach him one on one everyday until he did it. After that it was getting the strokes right and building up stamina.

My younger didn't learn as fast in groups because he gets distracted while waiting his turn. One on one works a lot better but he didn't need the consecutive days of instruction like my older.

[Storygirl]

Elizabeth, I woke up with a brainstorm, so I'm going to present it to you and then jump in the car and be away from home all day visiting my mom in the nursing home and the rest of my family :auto: .

 

Follow my train of thought. You talk about applying for the autism scholarship, which requires an IEP, yes? Does your son have one? If not, maybe the very first step for you in pursuing evaluations is having them done through the school in order to get the IEP. It would be free. They would not puzzle out everything about your son, for sure. You could push it further and then ask for an IEE, also at school expense. Then you can take all of the results that they get to your expert NP, whoever you pick, and have them analyze the school reports in addition to any other testing they may think is needed. This will also save $$$, because the expert will not have to start at the beginning of testing.

 

You are going to have to get the IEP for the scholarship anyway, right? You've been wondering where to start. So start there.

[Lecka]

Locally you cannot get "autism" on an IEP through the school district IEP process.  You can get an IEP and your child can have autism, but it will say something else on it, until you get the eval.  

 

They do not diagnose here.  

 

It is kind-of confusing to me, but I think the IEP might need to be partially re-done after the eval.  But ----- it would probably be very easy to make those little changes to the IEP, no big deal at all.  Most of the IEP could be done well with whatever testing or observation the school district has done.

 

But our area has a reputation for underdiagnosis, I think other areas are a lot more with-it and might be able to do more through the school district.  

 

I agree though -- you could get the IEP, and have it with you when you go to your next eval.  But it would not be a finished IEP until after the eval if it is like how it is here.  But it could be a functional IEP in every way, just needing the addition of the eval to say "autism" instead of "delay."  

 

For us -- I took in the eval when we got it, and they just changed his IEP and gave me the new copy.  It was easy.  It was nothing where I needed a new meeting or blah blah blah hassle hassle.  

 

I also think -- the school is likely going to do their own thing, not just take the eval and give you an IEP.  You might not want to wait around for the school to get around to scheduling you, when you have your eval completed and are ready to get going.  So that is a reason it would make sense to go ahead and to the IEP.  Doing the IEP was paperwork city here.  But -- then amending it when we got the eval was extremely easy and there was no turnaround time.  

 

Also -- everything stops here for school breaks, and if you ended up scheduling an eval in October, you could have the results in hand and know how you want to move forward, and then be stuck waiting for the IEP until after winter break.  

 

Overall -- I agree it sounds like it would be good to get started on the IEP now, so it is done or in-the-works.  But be aware it may have to be amended after you get the written copy of the eval, if that is how it works where you are.  I think that is something you could just ask them.  "How does it work for kids to get an IEP with autism to qualify for the autism waiver?"  Maybe they do it all, maybe they don't.  I would love to hear our district is flukey that way.... but on the other hand, I never hear of kids who were diagnosed with autism and shouldn't have been, so that is the bright side. I think you could ask that just for information, too, not asking it b/c you are trying or seeking to get the diagnosis.  It could just be for your own information, to find out what the process is, whether you go that way or not.    

 

 

 

 

 

 

[Crimson Wife]

Our district made a distinction between a medical diagnosis of autism (which youngest DD had going into the IEP eval process) and an "educational" diagnosis. Having the former did not automaticaly mean the child would qualify for the latter. I don't know if it is possible to get an "educational" diagnosis without a previous medical diagnosis on file.

[geodob]

OE, you wrote: 'I figured we'd just get the breathing working right and it would all be fine.

Which made me recall some research I advised on at the Sao Paula medical school about 10 years ago?

That was basically looking at the correlation between 'Learning Disorders' and what are termed as 'Shoulder Breathers'?

With typical breathing, when people take a deep breathe. They breathe into their belly/ abdomen.

But with shoulder breathers,  when they take a deep breathe. Their shoulders rise.

 

The problem with shoulder breathing, is that a much smaller volume of air can be taken into the upper lungs. 

Which significantly reduces the air supply.

Where this study was looking at the constantly reduced supply of oxygen to the brain.

Compensating for this, also requires 'rapid breathing'.  Which has a correlation with a state of anxiety.

 

Though his difficulty with putting his head under water when swimming?

Made me wonder whether he might be a 'shoulder breather'?

As with shoulder breathing, one wouldn't be holding a deep enough breathe. To put one's head under the water?

 

Perhaps you could simply ask him to take a deep breathe, and observe whether he breathes into his belly, or if his shoulder's rise instead?

[PeterPan]

Our district made a distinction between a medical diagnosis of autism (which youngest DD had going into the IEP eval process) and an "educational" diagnosis. Having the former did not automaticaly mean the child would qualify for the latter. I don't know if it is possible to get an "educational" diagnosis without a previous medical diagnosis on file.

So put that into plain english.  You're saying they wanted you to have the private psych eval first, get that label, then come to them with that and go through the IEP process?  

 

When I talked with a person locally who works at an autism and dyslexia specific charter school, she said to go to a private psych for evals, that the ps couldn't do everything.  But I didn't know all the questions to ask.  It was more just the start of that conversation.  And again, just because he's -ish with some things spectrumy doesn't mean he'll get a spectrum label.  I don't know what value the IEP is to me if he *doesn't* get that label.  There's another scholarship in our state for disabilities, and I have no clue what that covers or entails.  You go through the IEP process for that to.  

 

Just as an aside, given what that ps reading intervention teacher was telling me, they'd probably have a cow if they grilled my boy.  Wobbly writing, no reading... We've had people here who went to the ps for evals and they wanted to do RTI first and take over and require tutoring and stuff.  I really don't know what could happen.  I guess I could call them and ask.

 

Thanks Lecka for the analysis, because I hadn't thought through it that way.  You're right that the school district here is loaded and there can be delays.  You're right that it's something we need to think through.

 

Oh and btw, there have been cases on the board here where people got an autism label from one psych (a more general psych) and then went to an autism specialist psych and lost the label.  I read an article by a psych up at Case Western who was saying something to the effect that of course there's social withdrawal and spectrum-ish behaviors with verbal apraxia and that they don't necessarily go on to label it as spectrum, that sometimes they just chalk it up to what goes with apraxia.  So I don't know.  I'm keeping a journal of things and just going to try to be precise and accurate and let them figure it out.

[PeterPan]

OE, you wrote: 'I figured we'd just get the breathing working right and it would all be fine.

Which made me recall some research I advised on at the Sao Paula medical school about 10 years ago?

That was basically looking at the correlation between 'Learning Disorders' and what are termed as 'Shoulder Breathers'?

With typical breathing, when people take a deep breathe. They breathe into their belly/ abdomen.

But with shoulder breathers,  when they take a deep breathe. Their shoulders rise.

 

The problem with shoulder breathing, is that a much smaller volume of air can be taken into the upper lungs. 

Which significantly reduces the air supply.

Where this study was looking at the constantly reduced supply of oxygen to the brain.

Compensating for this, also requires 'rapid breathing'.  Which has a correlation with a state of anxiety.

 

Though his difficulty with putting his head under water when swimming?

Made me wonder whether he might be a 'shoulder breather'?

As with shoulder breathing, one wouldn't be holding a deep enough breathe. To put one's head under the water?

 

Perhaps you could simply ask him to take a deep breathe, and observe whether he breathes into his belly, or if his shoulder's rise instead?

This is actually what we JUST worked on in speech therapy Friday!  :)  She worked with us on how he was closing his mouth when he took his breath to go under.  She caught exactly what you are saying, that he was using his upper chest instead of his diaphragm, so then we had to figure out how to explain that to a 5 yo, hehe.  By saying "breathe in slowly" he got it.  

 

Breath support has always been an issue.  When he was little and starting therapy, we would use special straw blocks, multi-stage whistles, things to toot, that kind of thing.  

[PeterPan]

Going back to the IEP thing a second.  The local lady I talked with suggested getting the private psych eval, but I don't know what the sequence was on how to use that to connect with the school process.  Around here they do an MFE (multi-factor eval) and then sit everyone down and create the IEP.  I don't know how the private eval connects to that and what the sequence is.  I think even when you do private evals, they still want to do their evals with their people.

[Crimson Wife]

Youngest DD is most likely 2E (she's not verbal enough or cooperative enough for IQ testing to be accurate just yet) and has a lot of strengths. The ed code in my state makes it very difficult to qualify for an IEP on speech delay alone without any other diagnoses. I was worried that the district might try to play games and deny eligibility, so we did see the developmental pediatrician for an independent eval before she went through the district eval. There were enough "red flags" for our insurance to cover the cost of the eval.

 

I'd actually chalked a lot of the social interaction difficulties up to her speech & language delay (she had a diagnosis of mixed expressive-receptive language delay going into the dev. ped. eval) but the doctor noted other symptoms aside from just the difficulties with communication that pointed to ASD. Those symptoms are more obvious now that DD is 5.5 but she was not quite 3 at the time and they were easier to miss. The flip side of seeing an expert on ASD is that it made me wonder if it was an "everything looks like a nail when you've got a hammer" situation. But then shortly afterward, the school district psychologist, the Regional Center psychologist, and the pediatric neurologist all concurred on the diagnosis. 

 

At some point if we can find the money in our budget, I'd like her to get a full neuropsych eval by someone with 2E experience.

[PeterPan]

Is it individual or group? My older boy refuse to get his face wet so couldn't swim after two terms of weekly lessons. My hubby had to teach him one on one everyday until he did it. After that it was getting the strokes right and building up stamina.

My younger didn't learn as fast in groups because he gets distracted while waiting his turn. One on one works a lot better but he didn't need the consecutive days of instruction like my older.

It is group.  I looked into private, but it would have blown the budget at $25 for a half hour.  They didn't have anyone available who was experienced like that anyway.  We talked about the adaptive aquatics program, but he's finally getting breakthroughs and making progress in the class he's in.  I agree, he's off in la la land when they're working with the other kids.  On the other hand, he notices funny things, so who knows?  For right now at least it seems we're going forward.  I'll keep him going in the classes he's in as long as he can stay with the particular teacher he's got.  When they age him out and say he has to go up with the big kids, then I'll drop.  I *think* they have some flex though on that and are allowed to let this lady (who is the head of the swim lessons) decide to keep him at this level even when he ages out.  If they do that, then we'll just keep plodding.  Right now there are only 4 in his class, which isn't individual but isn't huge either.  

[PeterPan]

Elizabeth, I woke up with a brainstorm, so I'm going to present it to you and then jump in the car and be away from home all day visiting my mom in the nursing home and the rest of my family :auto: .

 

Follow my train of thought. You talk about applying for the autism scholarship, which requires an IEP, yes? Does your son have one? If not, maybe the very first step for you in pursuing evaluations is having them done through the school in order to get the IEP. It would be free. They would not puzzle out everything about your son, for sure. You could push it further and then ask for an IEE, also at school expense. Then you can take all of the results that they get to your expert NP, whoever you pick, and have them analyze the school reports in addition to any other testing they may think is needed. This will also save $$$, because the expert will not have to start at the beginning of testing.

 

You are going to have to get the IEP for the scholarship anyway, right? You've been wondering where to start. So start there.

You know, until you and Lecka put it that way, that had not even occurred to me!  Dh would have to be onboard with that honestly.  And in our state, will they try some kind of RTI thing and want to take over his education first, or will they just do the MFE because I wrote the letter politely and asked?

[PeterPan]

:grouphug:  Yeah, that is definitely rough! I heard from my mother recently that some of my 5 1/2 year old's behaviors were like any "normal" kid his age. They don't even live here and my mother has never met my youngest, much less seen how he behaves. It was quite irritating after a year of trying to explain autism to her. Anyway, just saying, it's so hard when you have all these voices picking at your brain!

 

This is so mind-bogglingly true.

[PeterPan]

Ok, so IF the other parent (who obviously would need to be on board) agreed to pursue the IEP through the ps, then it just so happens that possibly the person doing the OT eval would be SIPT-certified.  Probably wouldn't get the full SIPT testing, but if that OT ended up being the one doing it it would be a decent OT.  But I've heard the school district is swamped.  I know I've heard there's the law, but I've also heard they're swamped.  Seems to me like this is the best time of year to get in line though, right?

 

So what are the *down* sides to pursuing an IEP through the ps?  They might do what to me?  Sorry, but we're sort of non-interventionist, pay your bills, live a quiet life here.  What could go wrong if we do this? Upside is I get an OT eval on their dime, get some info sooner, and might connect to resources I didn't know I had, right?  Upside is they might turn out to be really nice, helpful people.  Downsides? Reasons not to do it?  They come in and steal your underwear size and profile you or something? Conspiracy theories? Nothing goes wrong?

[PeterPan]

Ok, another question.  What is the most concise way to learn exactly what I need to say/request in order to get what I need?  Are there like code words you use or don't use?  I know you need to request an MFE and that you need to do it in writing.  Do you need to give some sort of justification for your request of the MFE??

[Χά�ων]

Ok, so IF the other parent (who obviously would need to be on board) agreed to pursue the IEP through the ps, then it just so happens that possibly the person doing the OT eval would be SIPT-certified.  Probably wouldn't get the full SIPT testing, but if that OT ended up being the one doing it it would be a decent OT.  But I've heard the school district is swamped.  I know I've heard there's the law, but I've also heard they're swamped.  Seems to me like this is the best time of year to get in line though, right?

 

So what are the *down* sides to pursuing an IEP through the ps?  They might do what to me?  Sorry, but we're sort of non-interventionist, pay your bills, live a quiet life here.  What could go wrong if we do this? Upside is I get an OT eval on their dime, get some info sooner, and might connect to resources I didn't know I had, right?  Upside is they might turn out to be really nice, helpful people.  Downsides? Reasons not to do it?  They come in and steal your underwear size and profile you or something? Conspiracy theories? Nothing goes wrong?

Every state and every district and every school is different.

 

I helped a friend of mine navigate this with her son's school (he was enrolled and had attended since kindergarten). They did the evals and found nothing to help. Everything was wishy washy at best or just contradictory at worst. What she wanted and needed was clear answers and an outline of his strengths and weaknesses, what the schools could do to help and what she could do at home. That was not what they gave her, sadly. It was just more information that in the end told her nothing. They found that while he needed some help, he did not have enough needs to get help. 

 

 

He needed:

Vision therapy and Interactive Metronome primarily. He may get a bit more reading intervention to catch him up but after just a few months of therapy he was up to grade level and able to do his homework and maintain focus throughout the day. He went from barely passing 5th grade to going into all gifted or advanced classes this fall for middle school.

 

 

 

The downfall of the schools is that most do not test for the need of IM, or vision therapy or specific subtests. As sad as it is to say, most schools are about 20 years behind on the latest research and such for helping children with LD's. But, if your child needs to standard remediation using the standard methods they could help.

 

Technically you can have your child tested elsewhere and they reimburse you and you can have them pay for the outside services if they cannot provide them. IME the fight can take years and the out of pocket costs are exorbitant and for me it was cheaper to pay for the services my son needed and spend my time and energy on him than on fighting the schools for services.  

[Crimson Wife]

See if your library has a copy of NoLo's "IEP Guide: Learning Disabilities" by Lawrence Siegel. It will walk you through what you need to do.

 

The downside of pursuing an IEP is that it involves a lot of time and hassle on your part, and at the end of it, you may get nothing useful out of it. That is what happened with my DS when he was evaluated at age 3 because of his articulation disorder. He didn't qualify for an IEP because of the stringent requirements set out in the state ed code for kids with just a speech delay. What is frustrating is if he had an additional diagnosis like ASD or CP, he would've gotten speech services as part of his IEP because the criteria for students with an IEP has a more generous threshold than the initial qualification for getting an IEP at all.

[PeterPan]

Crimson, I'm not ignoring you on the ABA thing.  I'm just not sure I'm up to thinking of it that way yet.  I don't know if that makes sense, but that's not where I see my ds, as being enough on the spectrum to need ABA.  And that may be a huge shortcoming and I may be missing things other people are seeing, I don't know.  I mean, sure he's downstairs banging sticks as swords again, and sure he did it a few days ago and sure he does it a lot.  There are people at the milder end of the spectrum (or just on the other side and kissing it and not getting the label) who live with their quirks and never got ABA and whatnot.  Sigh. 

 

So I guess I'll ask what I'm wondering.  Are you saying this because of something I've *described* (specific things that to you are red flags) or more because of general helpful advice and information?  

 

And yes, Canucks mentioned my videos I've uploaded.  I've made no secret of them.  I've got a few more I'm uploading right now.  I have some of his play and a couple new ones of therapy.  And yes, what Canucks described is what happens, where some people look at them and go "Oh yeah, just like my kid with xyz label" and other people look at them and say all kids do that, you're just whining.  

 

 

This video is pretty typical for his play.  Here he's singing a song he makes up.  It's inspired by the Three Musketeers (yes, unabridged) that he has been listening to on the kindle.  He makes up songs and sings them. The sword clanging went on for quite a while, and he did it again today.  But get this, about the time you start to think it's really weird, he comes up and asks what I thought of it, which I thought wasn't spectrum.

 

 

This is on a bad day.  It seemed like more just play to me, and then when I started videoing it with my phone I realized I was standing in the middle of a circuit he was going around the house.  Over and over.  For a long time. I can't remember the events of what we had done the previous day, but someone was theorizing to me he was pulling into his shell after a taxing day.  Dunno.  

 

I've been trying to get some video of this odd flapping thing he does, and I'm not sure I have any yet.  But when he does it, you don't go oh yeah, there's autism flapping.  It just comes across like he has this odd habit, kwim?  It's not eagle spread wide but with his arms close to his side and he does this funny little flap.  And I haven't got a CLUE why he does it.  But he does it often enough on various days that it's not a fluke. It's just not a dependable, everyday, all day kind of thing.

 

He basically ignored Kbuttons' boys at a playdate btw.  Her boys are VERY nice and he talked to them for a sec and then walked off and did his own thing, oblivious to them.  Then when some ps boys came (and I was not watching closely enough) he somehow did something that offended a bigger boy (hitting, getting in his space, whatever) and I look over and see several older boys about to DECK my son and lay him out flat!!  He had NO CLUE he had offended them and was about to get beaten up.  No clue.

 

There's more, but I'll stop there.

 

So there are definitely some red flags, but there's not this kind of persistent comet's trail of undeniable swath that would make someone think formal autism.  But I agree there's a lot of this weird stuff.  In response to me saying "I love you" his reply was "I love you, but I love my watermelon more."   :lol:   It's the kind of stuff that, in isolation, you wouldn't blink an eye at.  But after a while that's a lot of hmms.  And it's what you do with the hmmms.  And it's who is the right person.  This psych I've got the appt with now can address the dyslexia especially well and also hit the dev. stuff and he's a neuropsych.  So I'm just hoping and praying this is the right guy for the moment, whew!

 

There, the videos are uploaded!  Just in case people are really bored or interested or whatever.  They're not exactly thrilling documentary.  :thumbup:

 

 Speech therapy a week ago.

 Later in that same ST session, now on the floor playing with Playmobil.   :)

 Here he is at mini-stuntmen gymnastics at the Y.  He's the little one.  

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[Χά�ων]

He chatters more than my DS did at that age but your first video is major flashback.

[Crimson Wife]

To muddy the water, I see similarities in the video of the swords to youngest DD (with HFA) but also to my DS, who was evaluated for possible Asperger's or PDD, but whom the pediatric neurologist felt strongly was NOT on the spectrum because of other traits. Her professional opinion was that the "red flags" that DS shows are a combo of ADHD + anxiety + giftedness. She didn't mention SPD, probably because it's not an official medical diagnosis, but I'm convinced DS has it as well.

 

2E kids are hard to evaluate properly, and while someday I hope to get the training to qualify to perform them, right now I'm just a mom with a bachelor's in psychology and an interest in the field. Maybe down the road I'll be a certified Academic Language Therapist and/or a licensed psychologist but I'm still in the "getting my act together to apply to grad school" phase.

[PeterPan]

To muddy the water, I see similarities in the video of the swords to youngest DD (with HFA) but also to my DS, who was evaluated for possible Asperger's or PDD, but whom the pediatric neurologist felt strongly was NOT on the spectrum because of other traits. Her professional opinion was that the "red flags" that DS shows are a combo of ADHD + anxiety + giftedness. She didn't mention SPD, probably because it's not an official medical diagnosis, but I'm convinced DS has it as well.

 

2E kids are hard to evaluate properly, and while someday I hope to get the training to qualify to perform them, right now I'm just a mom with a bachelor's in psychology and an interest in the field. Maybe down the road I'll be a certified Academic Language Therapist and/or a licensed psychologist but I'm still in the "getting my act together to apply to grad school" phase.

Exactly.  I wouldn't be shocked if that happened.  To me the one thing undermining that is he does *not* have the caffeine flip of adhd.  Just doesn't.

[PeterPan]

See if your library has a copy of NoLo's "IEP Guide: Learning Disabilities" by Lawrence Siegel. It will walk you through what you need to do.

 

The downside of pursuing an IEP is that it involves a lot of time and hassle on your part, and at the end of it, you may get nothing useful out of it. That is what happened with my DS when he was evaluated at age 3 because of his articulation disorder. He didn't qualify for an IEP because of the stringent requirements set out in the state ed code for kids with just a speech delay. What is frustrating is if he had an additional diagnosis like ASD or CP, he would've gotten speech services as part of his IEP because the criteria for students with an IEP has a more generous threshold than the initial qualification for getting an IEP at all.

Ok, I got an ebook version of the 3rd edition (2007) from the library and have it open.  The 2014 print version is at the library, so I can pick that up tomorrow if I'm organized.  

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[Crimson Wife]

Caffeine helps me think straight. I've tried giving it up in the past but I don't function very well without it.

[PeterPan]

Could you clarify the caffeine flip of adhd for me? I think I know what you mean but just trying to make sure.

Well the trend I've noticed (and what our OT pointed out to us) is that people with adhd tend to get tired with caffeine.  They can also have a flipped reaction to things that make you tired like benadryl, getting a stimulating effect from them instead.

 

I know someone on the boards said adhd was assumed and subsumed within a spectrum label, but I've since read that they'll only respond to stimulant meds about 50% of the time, i.e. that there are in fact differences.

[Lecka]

It sounds like some things are different from my local school district and state.  

 

But I will go out on a limb and say they wouldn't do RTI for autism as a general thing.  I can see hearing they do that for reading, but reading and autism are probably not handled the same way.

 

And here, again, is my take on ABA.  If a program or therapy can help your son, that is great.  If it can be called ABA for the purposes of insurance, that is great, too.  ABA is so broad here, it is anything.  

 

ABA is not just "here we are at a table, saying "touch your nose" and "point at the ball.""  

 

Where we are my son's head therapist has people doing Michelle Winner Garcia programs with older kids, and that can be called ABA, b/c the insurance company allows it.  

 

Obviously you would say -- well, that is not really ABA.  But -- why not?  You can make a case for it being ABA, and our insurance company buys it.  So, whatever.  

 

I was at first upset to know "well our insurance only covers ABA," but it has turned out to be that we can do pretty much anything I want or the therapist wants, just with a little gauze of ABA overhanging it, with the data collection, written goals, and behavior plan.  

 

There is probably more to it than I know, but that is what I can tell.  There are totally higher-functioning kids who are doing "ABA" who are doing things that are totally appropriate to them.  

 

They are not doing the same thing as my son, b/c it is not appropriate to them.  

 

Yet on the Internet ABA is always a certain thing, "say ball, touch your nose, clap your hands."  But that is not ABA locally.  I think it has a lot to do with my insurance, but really, I have found it to be wonderfully broad, and am aware of many programs that are associated with another term, not associated with ABA at all, but that can be ABA here and paid for by insurance.  

 

That is locally, though, and I think has everything to do with local insurance regulations.  My husband's military insurance will only pay for ABA, too, that is the only treatment that is considered research-based, and we need a BCBA as a supervisor.  But my son's BCBA chose his reading program and it is just a reading program that a lot of kids might use.  It is ABA b/c he is using it in an ABA program, but it is also just him going through the reading program and going through HWT.  HWT is ABA, too, iow, in our situation.  

 

I have had two people give a personal opinion that they don't think my son had ADHD or needs medication.  But, they said they were not doctors and certainly didn't know for sure.  Just expressing their opinions, and having seen other kids who did get diagnosed with autism as well and have benefit from medication.  

[PeterPan]

Caffeine helps me think straight. I've tried giving it up in the past but I don't function very well without it.

Well I think a little stimulant helps everyone think better and caffeine is addictive.  That's like the old fallacy of diagnosing adhd by saying the kid did better on stimulant meds.  Well most people are better on stimulants, lol.  

 

My dd on the other hand gets tired and groggy on caffeine.  This summer she toyed with an amount of coffee that gave her improved focus without making her tired, and it actually did work.  Thing is, it left her very jittery as it wore off.  I mean like freaky jittery, with her hands rattling.  I've never seen her like that. In general, if you give her a chocolate bar or tea, you can plan on her being sort of groggy later.  I've inadvertently done it to kids who came over to visit who I should have realized were adhd and didn't.  They drink a bunch of this awesome peach tea I make (recipe from here on the boards, good stuff!) and then crash.  

[Crimson Wife]

 I know someone on the boards said adhd was assumed and subsumed within a spectrum label, but I've since read that they'll only respond to stimulant meds about 50% of the time, i.e. that there are in fact differences.

 

The way the developmental pediatrician who gave the ASD diagnosis in 2011 and the psychiatrist who gave DD the ADHD diagnosis in June both explained it to me is that the ASD is considered the primary diagnosis. Other diagnoses like ADHD, anxiety, OCD, etc. can be co-morbid but they are considered secondary to the ASD. The secondary diagnoses may be necessary to have on file to have insurance pick up the tab for treatments, which is why we went through the red tape of having a formal eval for ADHD.

[Crimson Wife]

Yet on the Internet ABA is always a certain thing, "say ball, touch your nose, clap your hands." 

 

The ABA therapists working with DD are having her play "Simon Says" to get at these skills. They know she can touch her nose or clap her hands if she's paying attention. What they want is to get her to inhibit the impulse if they give the direction without first saying "Simon says..." It is executive functioning training wrapped up in a fun and social game.

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