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4KookieKids

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  1. That's a really hard decision to make, but I'm glad it's working out for you! :)

     

    PS. Will ABA be covered with your new insurance?

    In theory, it will be covered by both our primary and secondary insurance. Unfortunately, it is a new benefit for both of them starting 1/1/17, so details are lacking. Furthermore, we have very few ABA providers in the state because it has not been covered by most places in our state until this year, which means that it's very hard to actually get in some place. Our secondary ins still has the issue of only allowing "licensed providers" (not "certified" ones, as ABA providers usually are), but the primary ins doesn't have that problem. I've called both recently trying to get some new information, but they've said that late December would be a better time to call for new plans. It floors me a bit that they wouldn't have these details worked out already, but oh well!

  2. Well, things just got a little easier deciding whether or not to pursue ABA or continue to see our current psych. I think that, previously, I was concerned about somehow offending the psych by going the ABA route (even though she said she didn't recommend it for a 7 yo). But I just found out that my son's insurance (he has a primary through my husband's work and secondary medicaid through the state) is changing in January and our psych is only covered by one of the three plan options and our PCP is also only covered by one of the three plan options - but a different one. So I'm kind of relieved that I don't even have to try to explain to her why I'm going a different route and I can just explain that, as much as we appreciate her, keeping our PCP was our priority, and that's why we're going a different route with my son instead of staying with her.

     

     

    Don't get me wrong - I really like her and would've liked to continue seeing her. I don't really relish starting over with someone new. But it had also reached a point where my "liking" her was interfering with decisions I was having to make regarding what is best for my son (when her advice to not pursue ABA didn't seem to be in his best interest, actually), and I really didn't like being in that position.

    • Like 3
  3. Maybe I'm just misunderstanding folks, but they seem to be telling me that the ABA includes working with the child as well as the adult, and that the insurance won't pay for individual therapy for the child from two different places at once: so they won't pay for ABA through one place while we continue to see our established counselor through another. They keep saying it comes down to billing codes and that he can't get individual therapy from two places at once. And that sounds ridiculous to me because I feel like the types of therapy are obviously different! Does that sound like a load? I've had two different ABA clinics in my state and two different insurance companies tell me that if I went with them/ABA, then I could not continue seeing our normal psych. And maybe it wouldn't be necessary, bc we'd have so much other support? But I don't really like feeling like I'm put in a position to have to choose just one.

     

     

    I may just try both anyway and see if insurance notices or makes a stink of it... Either way, I suppose I have to wait because our current insurance only covers the virtual place where there's a wait list, and our new insurance won't kick in until January to give me more options locally.

     

     

    I hate waiting. lol.

  4. Well, I talked with pretty much everyone else who I had calls out to today and the prognosis is not good. They either don't really do ABA, don't take our insurance, or don't do in-home stuff (and require the kid be at the center 5 hours a day). Moreover, I couldn't do any of those options and still see our current psych (there's some sort of issue with only using one provider for one type of service that I don't understand at all - like someone would really want to be "double-dipping" by getting extra therapy sessions that they didn't need?)

     

     

     

    Here's hoping that things can change next year. I went ahead and changed our insurance today so that we have more options next year. It's going to be much more expensive, unfortunately, but I didn't really see any other option. I don't want to have to tell my kid some years down the road that there was help available to him but we were too cheap to get it. :( I feel kind of like we're getting it from both ends though: we lose an income so that I can stay home to homeschool (because it was obvious even w/o the official diagnosis from 3 years old that normal schooling would not be what was best for him) and now we have to pay more in insurance too. My husband's job is not considered skilled labor and doesn't pay the big bucks! The things we do for our kids, right?

  5. So the only place in the state that is covered by my insurance and does in-home ABA is an hour away and does it "virtually." The set up cameras in your home and send a "trainer" out (not sure what qualifications a trainer has, except that they're the one to work with your kid) and then the actual behaviorist watches 5-10% of the camera footage to work with the trainer on a plan for the kiddo. Does that sound weird, based on your collective experience? I got on the waiting list (and who knows how long that will take to work through!), but feel a little uncertain.

     

    Also, I don't know if this is ok to ask or not, but can someone please talk to me about ASD with respect to disability services? Is it considered a disability? Is it something you get SSI for? I would assume not (at least in all but the most severe cases) since it's becoming to prevalent, but I don't really understand a lot of this right now.

  6.  

    Depending what they require, there may be people further away who supervise people in your area. There is a lot of "so-and-so is supervised by so-and-so."

     

    Worth a shot to see, maybe.

     

    Do you know exactly what your insurance requires? Have you checked the bacb website?

     

    My son has a supervisor right now who is a psychologist, that I have never met in person, but who Skypes in about once a month or so. His real main therapist is required to be supervised by my insurance. Anyway -- she (the supervisor) works 2 hours away from where we live!

     

    Now maybe nobody is being supervised in a way that works for your insurance. But maybe.

     

    Edit: often the credential you are looking for for ABA is BCBA. Is that what your insurance wants? You can search people with that credential on the babc website.

     

    My son's real main therapist has been a BCaBA for years and I really am satisfied with her. But our insurance changed to make her have to have a different supervision, and that is why we have the Skyping supervisor now.

    I will call back tomorrow and ask, but the lady today seemed very knowledgeable about the situation. She says that the credential of BCBA is a certification, and not a license (which seems to agree with what I read on their website http://bacb.com/bcba/), and the way their provider system is set up it will only allow licensed providers to be approved providers. She said it's terrible, and behind the times since ABA started being covered (mandated by the state, she said) in 2014, but that it's not at the top of the priority list for folks who make these decisions and hence why it probably won't get addressed until spring or summer of next year. She referred me to one place about an hour away that is the only place to have people who are both licensed and also BCBA certified, but they only do center stuff and don't do in-home ABA.

     

    I'm keeping my fingers crossed because I did find one other person who's actually in my town who has LMHP and BCBA after her name (the website above has her listed as someone who supervises others as well), but it's not clear she'll take my insurance either and I'm waiting for a call back from her.

  7. Well phoey. Apparently there's a glitch in my insurance provider system that makes it so that only license providers can be covered, and not certified ones. So since most ABA providers in my area are certified but not licensed psychologists, none of them are covered by insurance. They're working to fix the provider enrollment system... but it probably won't be fixed until next summer. :P

  8. She also may not have wanted to overwhelm you! I see that a lot. A lot of "let's not overwhelm the parent" when they give the diagnosis.

     

    Yes, I do think she operates this way. She was also very "do what's best for you" before hand, even though she said this past week (hindsight? wishful thinking? genuine? it's not clear to me, bc I like her and think she's probably genuine, but it *seems* a little self-serving...) that she's known since the beginning, but didn't want to push us since I was very resistant to any sort of labels or diagnoses (until things got completely out of hand).

     

    Thanks. :)

    • Like 1
  9. Don't tell your psych anything right now, kwim? It's going to work out. I agree you need that level of support, absolutely! You might find the behaviorist you bring in is really stellar for that and able to problem solve. Our behaviorist is someone I can write/text/call at ANY time. No extra fees. And while I get billed for an hour a week, I get 1 1/2 hours (1 hour with ds, 1/2 hour + with me) AND the instant help any other time. It's a lot of support! So you could be doubling your support or transitioning your support. It's all going to work out.Meet the people, gather your information, and don't feel like you have to decide or say anything till you've got things in place and know what your plan is.

     

     

    Don't they automatically share medical records? I know my psych and my ped share communication and I think the OT as well. Is there anything I need to say/do when I meet with them to avoid that sharing at this point?

     

     

    Thanks for the encouragement that I don't need to worry about folks not seeing it, as well. It was interesting to see the results of our testing, because I had him right at the cut-off of levels 2 and 3, whereas my hubby and family friend had him almost dead center level 2. But of course, I'm the one who's with him all day, every day. I thought we'd be further apart, just from looking at their answers compared to mine, but I guess it all somehow matched up fairly close. Seems a little strange, but reassuring nonetheless. :)

  10. Thank you very much. I contacted three different folks who offer in-home ABA in my area, and will hopefully hear back from them in the next few days. I'm not sure exactly what to tell our normal psych, since I feel like I'm sort of going against her suggestion, but I feel like there's a lot that could help from having someone here with us (though I'm not sure, because he definitely has a normal facade he can put on in front of others for a decent period of time...). Maybe I'll just use my hubby as a scape-goat, since it's just easier to say "Hubby really wants to try it for a little bit and just see how it works..."

     

     

    I do feel like I'd like to keep seeing her, because she gives me a lot of tools to use with him (and all the children, actually), and I really benefit from and appreciate that. But I think I really could also use a bit of a break and someone else working with him some. I wish I could find something to take in to talk with the psych about regarding older kids benefiting too. So far, it's been lots of individuals/anecdotal stuff, which is good, but not exactly scientific. Oh well! :)

    • Like 2
  11. Just agreeing with what Lecka is saying.  My ds gets 1 hour a week with the behaviorist and 8 hours a week with his other, MUCH LESS EXPENSIVE, ABA team members.  It just sounds bizarre for the psych to say she'll "do ABA" to him.  She's going to come to your home and do what my behaviorist does?  Or she's going to be the consultant and hire a team to come in?  Behaviorists here are (average) $100 an hour, while an ABA worker (now called RBT if they ahve that label) is $20.  So you can't afford to do EVERYTHING with the phd person, not if you want hours, not if you actually want stuff done. Phd psychs here bill at $200-300 an hour. And 10 hours a week is a pretty normal amount.  In fact, he might even benefit from more.  That 10-20 rec would be a pretty common starting place.  So what is she saying she'll do?  All of that or supervise a team or just one hour a week?  

     

    Don't get in turf wars.  The psych has put you in a bad position, framing it the way she has.  You're free to choose anyone and SHOULD, and the psych will professional enough to accept that.  Besides, there's what she would recommend for people in school, and what you need to make happen when you're at home.  I could see what she's saying if he was in school, also getting services there.  But you are the ENTIRETY of what he's getting, and you would benefit from an in-home team giving you 10-20 hours.  So you want someone who has those employees to contract and make that happen.

     

    How do you know if they're good?  Well, actually being a certified BCBA is a good start.  My behaviorist was doing it before BCBA and isn't certified, but she came recommended by others in the homeschool community here.  Some people work with early intervention.  It's a bit different beast when you're talking about a 7-12 yo dc at home.  My person works with all ages, into adults.  That gives her more spread.  I don't think you want someone whose sole experience is EI (5 and under), kwim?  You want someone you can talk with, someone who is trained in a lot of modalities, someone who *explains* things well, someone who returns your texts or emails promptly, someone you feel you can collaborate with to problem solve.

     

    I would just call around and talk with people.  Usually they'll come meet you for an intro meeting to see if it's a good fit.  You'll see how they interact with your dc.  Ours listened a lot at that first meeting, did some trying to play with ds, and then at the end showed, in a single moment, that she was QUITE capable of handling him and working with him.  She was fully, blooming pregnant, and he was getting aggressive with us because we were no longer talking with him.  She turned and said, very quietly "Are you making a good choice?" and I was like WHOA, you don't understand, he's so autistic and such a victim of his neurology he CAN'T make a choice, all this horrible stuff just happens to him!!  And I could see that she viewed him differently than I did, as someone capable of making choices, of no longer being a victim of his body, and of someone who could handle him even when fully pregnant, meaning she had no force, no strength to apply, and even some danger.  I mean, think about that.  

     

    So I think you'll know.  You want them in your home, or at least I would encourage you to let them in your home.  If you want change, you'll need hours, time spent, a team approach, workers in your home.  It has brought us peace.

    This was so helpful in helping me understand how ABA is different than what we're already doing with the psych. Thank you. It has also helped me to feel less guilty with calling around to get information. Apparently, my state didn't cover ABA (or some such mess - I'm a little unclear on the details but someone on the phone was telling me this today) until 2014, so we have very few ABA providers because they all left the state many years ago so they could find work.

    • Like 1
  12. Can you find an actual BCBA, a behaviorist? It's true, sometimes a BCBA *is* a psychologist who has that added training.

     

    Our stuff is all in-home. No, I would not be satisfied with social skills groups. I would encourage you to take the time to look at ALL your options for a behaviorist/BCBA before choosing.

     

    Yes, there are options for them in my area. I think I'm nervous about offending someone (we really like this lady!) by going somewhere else. If all treatment/care would be equal, I'd just as soon stay with her. It's hard for me to think about going somewhere else when she's nice and says she can do it, because I feel like I'm basically saying I don't trust her judgement...

     

    How do you really look at all your options? Do you talk with the different people? I feel like anyone can *say* they're good, but how do I know?

  13.  

    So remind us, she got diagnosed with ASD2? Again, it's all on the first page of the thread and I don't remember. ASD, by definition, requires support. CBT is good for some things, but it's not going to step up and be ABA. ABA (umbrella) can work on behaviors, social skills, self-regulation, motivation, on and on, just keep listing. You must have SOMETHING going on, or your dc wouldn't have gotten an ASD diagnosis, kwim? ABA gives you the chance to clone yourself, to have more people working on the goals.

     

    Summary is: Oldest child is a boy, 7 (newly, bday in Aug), relatively bright/advanced, and diagnosed this week with ASD, level 2, with a referral for sensory processing disorder and another for adhd.

     

     

    His most problematic areas (according to the GARS) were cognitive style (fixed interests, characteristics), emotional responses, and social communication. That's pretty much inline with our experience as well.

     

     

    The psych has been seeing us for several years and says she can certainly do ABA (said something about having at least twice the number of credits in the area that are usually required to be certified), but she finds it more helpful for the 5 and under age group because kids his age start thinking for themselves a lot more (those weren't her exact words, and I'm not really sure what that has to do with ABA...). She put us in contact with a place in town that has some social groups (I don't know if that's the right word? groups for asd kids to learn and practice social stuff) and does a lot with asd kids (as well as the two referrals for following up on the sensory and adhd issues). She said we're more than welcome to see the other practice (that focuses almost exclusively on asd) for everything if we'd rather, but that she also has the experience and training to help us as well so it's totally up to us how we want to proceed.

  14. Lecka has talked about this before, but there's ABA in the strictest sense of the term (contrasted with RDI, PRT, whatever) and then there's ABA the umbrella term to get insurance coverage.

     

     

    So when I say I brought in ABA, I brought in an umbrella of service.  She has LOTS of training in LOTS of areas.They call it ABA, but she can bring in RDI, anything. Umbrella term.

    Ok, I apparently need to look up what all these acronyms mean! lol. Maybe I'll come back with questions after I look up RDI and PRT and whatever other rabbit trails that leads me down! :)

     

    That link was pretty helpful in the sense of letting you see nuances of what they do.  You're actually asking a good question about what would change if you brought in a behaviorist vs. using your p-doc, yes? My behaviorist is on-call at any time.

     

    I can write her ANY time, call, anything. The behaviorist actually comes in and works with the kid. She works through social thinking curriculum, plays, bonds, is able to make demands and increase demands, works on self-regulation.;She can help problem solve, sure. She coordinates the rest of the people on your ABA team.Bringing in additional workers gives you more time when he's working on goals (self-regulation, behavior, academics, intervention, play, speech, anything). It gives me a break so *I* don't have to be ON all the time. And, most importantly, it helps skills generalize. He needs to do things with multiple people, multiple settings, so the skills GENERALIZE and are there no matter who he's with.

    What is a p-doc? The lady we see is a clinical psychologist who coordinates with our normal pediatrician (he's the one who referred us to her originally) and referred us to the OT for a sensory processing eval. I threw her card away a long time ago (when we programmed her number into my phone...) but I'm pretty sure it said something along the lines of "cognitive behavioral therapy." But she does see us as a family - so do you mean someone else who would work with him alone while I'm not there? I love the idea of having a bit of a break sometimes - for my own sake, as well as the sake of my three younger children - but I'm not sure how this all works yet, so I hope you don't get tired of my questions! :)

     

    So yes, it would be a HUGE step up as far as what you'd actually get done. No, it's not going to be this constant flow of man I NEVER could have done that. Of course you could have. You're bright, dedicated, etc. and can do these things. But you can't do it all the time and the dc needs the chance to do them with other people. It's not good enough to have the skills but only when Mom is there supporting.

     

     

    It really boils down to money and funding, not whether it's good. It would be good. It's only a question of what you can make happen.

    This is good to know. Thank you. I'm pretty sure our insurance is a pretty decent plan and would cover whatever we needed, though I can't say that for sure since I don't really know what we need yet. :)
  15. So what is ABA exactly? Because I've read some about it, but it seems a bit vague to me. Things like "systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior" sound like a really fancy way to say continuing to do what we're doing (seeing a psych who gives us ideas on how to change things or teach things). What am I missing? I mean, does our counseling have to be ABA or NOT? I think I'm confused, so I'm sorry if this is a dumb question!

  16. Well, I feel a sense of relief mixed with validation after today's appointment. She put him at level 2, which means I don't even really need to second guess the results like I probably would've if he'd been closer to borderline. She said he also tests high for having ADHD but that she would rather not add that diagnosis on initially - at least until he's been evaluated for sensory processing issues, because adhd symptoms can often mask sensory issues. So what now? Besides an evaluation for sensory issues, what happens now? How are things different? She has massive experience studying but advised against ABA since he's seven... I feel unsure of what I feel, if that makes any sense. Mostly I feel relieved that it's not all in my head like a number of friends and family suggested. I guess I'm just curious what happens now?

  17. Thanks, all! I already told her I'm going to help her put them on in the future, because I know she was just yanking them too hard. She loves wearing her ballet outfit, that it may take me some time to get her to warm up to the idea of wearing pants over her tights, but that's a great idea. Thanks so much!

  18. So I'm starting to get the idea that I should take out stock in a tights company. DD5 started ballet this year, and we're going through tights like crazy, but she's not being careless - just young and doing normal things for her age.

     

    So I'm looking for *either* quality tights that will be more durable OR cheap tights that I won't mind replacing frequently. I'm completely new to everything ballet and have made a lot of dumb mistakes so far (e.g., signing her up at the nearest dance school instead of researching it, and having her spend her first month of "ballet/tap instruction" learning how to twerk before moving her to a different school....) so I'd just like to figure out what I need to do and know about tights while we're still pretty early in the game! :)

  19.  

    Part of my problem at one point was having no idea how much support I was providing. No idea at all.

     

    If you know you are providing supports, maybe documenting your supports is possible without removing them.

     

    I don't know.

     

    I would never have realized what supports I was providing, until I had it pointed out to me by someone we saw after my son was already diagnosed.

     

    I don't know if you are at a point where you cannot have an accurate result, or not, or if maybe it turns out you already can have an accurate result.

     

    There have been some homeschool moms here who are truly providing but such a level of support and choosing activities in a way that nobody sees anything, though.

     

    I think this is something I would ask about with the family therapist, it may be something where he or she says "don't worry" or maybe he or she will have some suggestions for you. I think if the family therapist doesn't think it is an issue for you, don't worry about it. And if so -- problem solve with the family therapist. I think it is something where it is nice to have a family therapist!!!!!

     

     

    I honestly don't know. I do prop him up a lot, I think, because I'm there all the time and can see a problem well before it erupts and then intervene to diffuse it altogether (most of the time, at least, so that meltdowns rarely occur in public). Also, we have fewer problems at playdates because it's generally time where I don't have many expectations of him (chores, schoolwork, etc.) and he's allowed to do anything he wants to (within reason, of course). The meltdowns usually happen at home or at the end of the playdate, when it's time to go home.

     

    The therapist listens pretty good. And at one point when I spoke with her yesterday, I even mentioned that I feel silly for getting all worked up over this (I definitely started crying in the office when trying to explain how frustrating and difficult family life has been lately) and I haven't talked about it with my friends much, but all but one friend (the one who I did give forms to) told me I was being ridiculous (I talked with two others: one told me that none of this would have become a problem if I hadn't homeschooled, and the other told me that kids are kids and everybody has problems and there's no reason to get doctors involved looked for labels and excuses - somehow, I wasn't really encouraged by either answer). I mentioned that, unlike some issues I've had with my daughter, it's hard for me to list one or two big things that disrupt our day; it's like a thousand small things every day. And the therapist reassured me that, even from the little things that I was describing that happened yesterday morning (our appointment was at 9 am), it's ok to be upset that stuff like that is happening all the time, and it's ok to want to identify what's going on and get help. And whatever is going on, it's not trivial and she agreed that he needs more help than he's getting now.

     

    I think I'll let my friend fill them out, but then look at them and talk with her (not to change answers of course, but just to hear more of her thoughts about them). The therapist knew going in that my friend may not know him well enough to give good feedback. She wasn't going to give an extra copy of the forms for her initially, but then I thought we might as well see, and my friend promised to be honest if she doesn't feel like she has enough experience to fill them out well. So we may or may not end up using her feedback. Fingers crossed!

    • Like 1
  20.  

    The best case scenario is when they've come to you saying they've seen behaviors that concern them.  But yeah, a good long day together, like more time than usual, time when he's in transition, time when he's likely to have behaviors...  

     

     

    She has a son who's mostly in the same boat, so we've talked about it alot. I'm not sure what she's seen and what she hasn't. I'm interested in seeing what she has to say. Is it wrong to look at her eval before turning them in?

    • Like 1
  21.  

    Maybe it's just my state, but I can't imagine not getting a dx. Having a dx for autism, anything SPD, or similar opens a ton of doors here. We are able to keep Early Intervention services, as long as they are first accessed prior to age 3, after age 3 - with a dx. We have TEFRA (state medicaid for children with chronic conditions and it has nothing to do with family income, so it's available for any dx-related services and/or therapies - including genetic testing in our case, and it doesn't matter at all what your income is. The state will also provide several hundred dollars every month to be used for something dx-related (dance classes for OT needs, sensory equipment for the home for an SPD child, etc) for qualifying children.

    And with a dx, our private insurance is willing to pay out for more therapies than without a dx.

     

     

    I've wondered about this, bc I just got insurance info for next year and one of the limits was 60 therapy sessions (OT, speech, physical all combined), though it said that, for some conditions, limits may not apply. And it made me wonder how that all will come out in the wash!

  22. They're normal things to be doing.  I would talk with her if you don't understand what the statements on them mean.  If you write out notes as you fill them out, so the person can see what you were thinking on ones where you were between numbers, that can be good.

     

    Did she give you copies of the GARS or BASC for others to fill out as well?  Make sure those people have SEEN the behaviors that you see.  If they haven't, they won't get marked, kwim?

    That makes sense. There were some that I wasn't sure how to answer. She asked if there were people who know him well enough to have seen the behaviors, and there is only one person I could think of who I thought *might* know enough to do it (she's been my best friend since before he was born and our kids are friends and play together at least once a month, but sometimes once a week). So the psych gave us an extra set for her to fill out, but I told her clearly that if she doesn't feel like she knows him well enough to fill them out, once she gets into them and sees what they ask, then there's no pressure to answer and she can just quit and we won't take her forms into consideration. We have a play date tomorrow for the kids, so I ran the forms over tonight so she can look them over and maybe if she has questions about particular statements, she can observe tomorrow while the kids play to help her answer better. It's a little tough not having more folks who know him and are around him day-in/day-out when homeschooling in this situation. Oh well! We'll see. :)

  23. You can ask her what tests she would run and then do a little research to see if you think it might be sufficient.

     

    The GAR is a kind of checklist, where the parent lists how often you see certain behaviors.

     

    The ADOS is often called the "gold standard." The tester does an observation of the child while asking them to do certain tasks and then scores the observations.

     

    The ADI-R is another checklist, I think, but is conducted as a parent interview.

     

    You can search for more information about these and other possible tests online. There are pros and cons to each, in my opinion.

     

    The only one we have experience with personally is the GAR (which has since been revised). DH and I found it really hard to quantify some things -- "do you think we should circle the 2 or the 3?" -- and it didn't give us a chance to verbalize all of our concerns, since it was just a checklist.

     

    We had someone else say that they would run the ADOS, and we felt uncertain about that, because DS's behaviors vary. We can't count on him displaying certain behaviors during the observation period, and there are some behaviors that he used to have that he has since outgrown.

     

    If we ever proceed with full autism evaluations, we would like to make sure that the screeners use multiple methods and are really willing to listen to DS's history and our parental concerns, instead of just relying on a particular score on whatever test they prefer.

     

    Since your psychologist knows him well, she might be a good choice. But I'd ask what tests she uses and then decide if you consider that sufficient.

     

    So she gave us the GARS3, SRS2, and BASC3 to start filling out. Anyone have experience or thoughts on these?

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