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Well, the results were pretty much what I expected. The therapist noted that dd is definitely a sensory seeker, but gets overly hepped up with vestibular activities. She gave us a list of heavy work activities to do with her at home whenever the hyperactivity kicks in, to help her to settle, and also before we do any work that will require focus. I'm pretty sure that much of the heavy work will also rile her up, but I'm willing to try...

 

Do any of you have experience with sensory seekers? Does this work actually help them throughout the day?

 

She also recommend The Listening Program...Do any of you have experience with TLP? From what I've seen, it looks like it's mainly for auditory processing issues, which I don't think is a problem for us (and I found a lot of discussion as to whether it really helps anything at all), but is there something about the program I'm missing? I don't really want to spend money on a controversial program that doesn't quite seem applicable to us.

 

She also wants to try Zones of Regulation and How Does Your Engine Run, to help with emotional regulation. They're typically meant for older kids, but she thinks DD is bright enough that she'll be able to get something from the programs, especially if they're modified somewhat.

 

We have our next appointment a week from Saturday, I'm not really sure what to expect. DD was at her ADHD finest, completely bouncing off the walls hysterical because all the equipment was so overstimulating. Only threats of not being able to come back again got her to help clean up all the balls and pillows she'd thrown and agree to walk out the door...

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That's a pretty standard list of things an OT would do.  Some OTs do BalavisX and/or neurofeedback.  I don't think it's going to be one thing.  Yes, dd's first OT had her doing some of the listening, whether it was that program or a similar one.  I'm sorta iffy on it.  But what I'm saying is OTs train in things and have their gig on how they approach it.  This is a COMMON scenario that an OT sees, so they're saying they know their mix works pretty well.  

 

That's good that she gave you homework.  :)

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I suggest asking them if you can try the listening program but not commit to doing it each session if it's not really helping. My one child liked some therapeutic listening (not this program in particular), and my seeker/avoider didn't care. He does calm down with some kinds of music, but the therapeutic music was not his thing.

 

I think it's awesome they are going to try some self-regulation with the Engine/Zones programs. 

 

My big sensory kid is a seeker/avoider, but heavy work was very calming to him. Vestibular made him feel weird. Vestibular plus heavy work was helpful, but I wouldn't do that combo to ready him for school work. That's a therapeutic combo for him. What heavy work activities do you think are going to rev her up too much? That would probably be an unusual response, though the context makes a difference (at home vs. in the overstimulating therapy room), and some kids do have reactions to specific activities that are unexpected.

 

A lot of OT is taking research-based stuff, trying it on a kid, and looking to tailor the right fit. You have to be willing to try stuff and to tweak, and the therapist needs to be willing to try stuff and to tweak. The therapist also has to be able to accurately read your child to see if things are effective. Sometimes the tweaking means different activities, but sometimes it means a different combo of the same activities or doing them in a different order or modifying the activity. You have to keep an open mind to some extent, but the therapist should also be able to tell you what he/she thinks is working and not working, why you should give it more time or switch it up, etc.

 

I think the plan sounds like a great plan A. If it ends up not being a good fit for her, the real test is how the therapist handles it. 

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Oh, I forgot to say this, but I think the heavy work has a cumulative effect, and the more the vestibular gets integrated, the less of the heavy work you probably have to do to calm her.

 

I would do as much heavy work in as many contexts as you can as often as you can, not just the actual OT homework. Have her push/pull the laundry basket (or carry if it's not too heavy). Toting things, pushing/pulling, deep pressure, etc. My older son that likes heavy work has always thought actual physical heavy labor is the bomb. He can't get enough of hauling things all over. Wagons full of dirt and rocks, laundry baskets, bags of rice from the store...you name it. I have to be careful he doesn't lift things that are too heavy (I would not be surprised if he could lift something close to his own body weight), but our OT (with 30 years of experience) was totally stunned at home much heavy work he liked and how much deep pressure he wanted. When he was six months old, he used to drag a FULL basket of magazines (which probably weighed close to what he did at the time) across the floor while crawling. He just totally seeks it out.

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I suggest asking them if you can try the listening program but not commit to doing it each session if it's not really helping. My one child liked some therapeutic listening (not this program in particular), and my seeker/avoider didn't care. He does calm down with some kinds of music, but the therapeutic music was not his thing.

 

I think it's awesome they are going to try some self-regulation with the Engine/Zones programs. 

 

My big sensory kid is a seeker/avoider, but heavy work was very calming to him. Vestibular made him feel weird. Vestibular plus heavy work was helpful, but I wouldn't do that combo to ready him for school work. That's a therapeutic combo for him. What heavy work activities do you think are going to rev her up too much? That would probably be an unusual response, though the context makes a difference (at home vs. in the overstimulating therapy room), and some kids do have reactions to specific activities that are unexpected.

 

A lot of OT is taking research-based stuff, trying it on a kid, and looking to tailor the right fit. You have to be willing to try stuff and to tweak, and the therapist needs to be willing to try stuff and to tweak. The therapist also has to be able to accurately read your child to see if things are effective. Sometimes the tweaking means different activities, but sometimes it means a different combo of the same activities or doing them in a different order or modifying the activity. You have to keep an open mind to some extent, but the therapist should also be able to tell you what he/she thinks is working and not working, why you should give it more time or switch it up, etc.

 

I think the plan sounds like a great plan A. If it ends up not being a good fit for her, the real test is how the therapist handles it. 

 

That's very helpful kbutton, thank you. I don't think they were planning to do TLP there, she just told me to look it up and said it might be helpful, I assume for home use.

 

She actually recommended we start with tactile activities, then the heavy work, then a little vestibular, and then go back to the heavy work, really focusing for the longest on that work. In the list of activities she had things like wheelbarrow walks, tug of war, wrestling and jumping on the mattress. We've done all of those things and they do make her go into her hysterical silliness mode. She LOVES them, but I've never seen them calm her.

 

Other proprioceptive work does, though...Massages, bear hugs, and recently joint compression, she just loves. So maybe I need to just try out some of the listed activities and ditch those that seem to have the opposite effect? We haven't tried heavy lifting/pushing, I'll give that a try. Maybe the combo of the three types of work will also make a difference, it's definitely worth a try.

 

I'm trying to figure out what they're actually going to do during these appointments, other than let her play which, you know, we could do elsewhere for cheaper. Are they evaluating her while she plays? Or will they actually incorporate mindfulness into it? I was hoping the therapist would give me a better idea of what to expect while we were there, but we went a half hour over today and I didn't have the time to ask.

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We've done all of those things and they do make her go into her hysterical silliness mode. She LOVES them, but I've never seen them calm her.

 

Other proprioceptive work does, though...Massages, bear hugs, and recently joint compression, she just loves. So maybe I need to just try out some of the listed activities and ditch those that seem to have the opposite effect? We haven't tried heavy lifting/pushing, I'll give that a try. Maybe the combo of the three types of work will also make a difference, it's definitely worth a try.

 

I'm trying to figure out what they're actually going to do during these appointments, other than let her play which, you know, we could do elsewhere for cheaper. Are they evaluating her while she plays? Or will they actually incorporate mindfulness into it? I was hoping the therapist would give me a better idea of what to expect while we were there, but we went a half hour over today and I didn't have the time to ask.

 

Yes, you will want to try some and then let them go. If you know some of this is not calming up front, then I would tell them so and ask that they rethink the plan. Some of those things do multi-duty, and that is probably why they are planning to use them. For instance, the wheelbarrow stuff is heavy work, works on the muscles of the hand, works on the shoulder girdle, and I think it does stuff for core muscles. Maybe more. The OT will try to do as many activities as they can that accomplish more than one thing at a time, but it's okay to say that something is overstimulating. These are just probably favorite go-to activities for them. My son would've gotten too wild with jumping on a mattress at that age as well. They also go for fun stuff because it helps with compliance! If they push you to do things you KNOW always ramp her up, then I would nicely tell them that you think giving her those activities is training her to NOT listen to her body, not learn how to regulate herself, etc. Maybe in the future, she'll know how to use those activities and then let them go, but right now, she can't handle that. But be open to hearing them discuss the activities.

 

A lot of it is like play, but a good therapist is going to be looking at responses, adjusting, figuring out what's easy and hard and why so that they can provide palatable activities that target what the child needs. The good thing about it being like play at times is that there are things you will want and need to do at home, and if it's play, you can continue to do what your child will need over time. Our OT looks to set and meet goals, and they try to give you an estimate of how many weeks it should take. When it gets close to the end of that time, they will evaluate and go from there. We did twelve weeks of OT with our boys, and they had different kids of therapy for each, but as much as possible, they used compatible activities to keep it easy at home. They told us what kinds of things would be ongoing (keeping up muscle tone is one of those) and which things should be permanent changes or significant improvements (sensory defensiveness, vestibular response, etc.). Some things, like Zones, are tailored to where you child is at now, but leave room for growth over time. It was made clear to us that they wanted us to have measurable improvement in whatever was the most pressing need at home and developmentally, but we can come back later if we need to tweak things or new issues come up. I hear about some people doing OT for years, and while I am sure that is needed for some kids, that's definitely not the goal for our clinic.

 

Mindfulness--our zones work was not integrated. It was a separate part of the session. However, they expected my son to use some tools they taught him in the more physical part of the therapy session at home, and to keep track of whether those things helped him move from one zone to another. I don't know how most OT groups use it, but that was our experience. It was very helpful. She is young--zones may be a "now and later" kind of therapy that she uses a little bit now and more later as she grows in awareness. My older son was 10 when he used zones, and I think they considered him moving into the prime target age group. My younger one could probably handle principles, but he'd need a lot of support to reflect on how well it worked and such (he was newly 7 at the time).

 

We were also told that we might want to look into Ball-a-vis-x elsewhere. Our clinic doesn't really do it, but they think it would be helpful. But, it wasn't necessary to what the goals were for the timeframe we were there. It was a suggestion based on other things they noticed about my younger son.

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My DD wore a weighted vest for a while in preschool. 15 minutes per hour is what her OT recommended. She did not use it in K but the summer school teacher tried it & recommended DD use it this year in 1st. It's one of the things I have on my list to discuss at the IEP meeting we are supposed to be having soon.

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For my ds, the sensory input helps with the sensory seeking, but working on the BalavisX (brain integration, bilateral stuff) and retained reflexes is calming.  Did she test for retained reflexes?

 

Nothing says you have to stay with the first OT you start with.  They're all different, and they each have the things they've gotten trained in and how they approach stuff.  If this one isn't inspiring your confidence, call around and look at other options.  Now it *is* true they don't necessarily tell you *everything* they do on the first visit.  But it's also true they have their gig and the stuff they've trained on, and that's what they do.

 

To me, I don't think the cerebral stuff is enough for this age.  That's all nice, but I'd be asking did you look for praxis, is she low tone, were there retained primitive reflexes...  And no, the listening stuff did squat for my dd.  I'm not saying it can't do anything for anyone, just that it did diddley for us.  Between the two of my kids we've seen 4 OTs now.  They're each different with their mix of what they do.  I'd go back to the questions.  When will she test for retained reflexes, did she look for praxis and low tone, does she do any forms of bodywork, what is she going to do for midline stuff.  If there's NO midline work (BalavisX, Brain Gym, School Moves/Focus Moves, neurofeedback, metronome, something, anything), I don't know.  Ask her if she's testing for retained reflexes and what methodology she uses to treat them.  

 

Some OTs do a quickie eval (one hour) and then talk and let it unfold as they work with the dc.  It might be the therapist is doing this and that as you talk you get more concrete things (brushing, exercises, etc.).  With my ds, it became apparent after about a month that something was improving.  It was just this kind of subtle wow, he's a little easier to work with...  So give her a month or two, let it unfold, but don't let it go on endlessly.  If she's not getting SOME kind of progress within a month, at the most two, move on.  

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Thanks all, and thanks for bumping the thread, CrimsonWife. It looks like all the listening programs are more for APD or auditory hypersensitivity, so I'm not sure why she would have recommended them. Unless it's as you suggested OhE and they just have their go-to programs that they try for every kid. The only programs the therapists have listed that they're certified in are TLP, ILs and IM/IM-home (and HWT.) So the only potentially applicable body work they do is IM. (Actually, she's certified in IM, but she didn't mention it at all as one of the possible methods they'd use for Anna. Why would she mention TLP and not IM?)

 

They didn't check for retained reflexes, really she only worked with Anna for about 20 minutes and spent the rest of the hour talking with me. (It was only supposed to be a half-hour appointment, so we actually went over.) Besides our discussion, she spun Anna in a swing, swung her back and forth a number of times and told her to wait for X number of swings before she jumped off into pillows (checking for impulsivity maybe?) asked her some questions, had her draw a picture of herself, and write letters. I don't see how any of the activities they did could have checked for praxis or low tone, I doubt there's much she could have intuited from those few activities, so I think she was going mostly off our interview and Anna's obvious hyperactivity while she was there.

 

So...maybe they're waiting till future appointments to actually make more concrete assessments? I'm starting to feel a little uncertain about continuing...But really there's nothing else in our area unless I want to drive an hour-plus to the city every week. I guess you're right that it makes sense to keep up with this for a few weeks, find out what their concrete plans are and then see if it makes sense for us to continue or move on, or stop altogether. (I may even buy and work on Focus Moves on my own instead, to see if it helps at all.)

 

A weighted vest might be a good idea...I've only heard about them being used for ASD, but it does make a lot of sense for her. She already is able to sit still so much better when I'm holding her or rubbing her back.

 

(We did some wrestling and jumping on the bed with her last night...I told her the therapist had mentioned it might calm her down and Anna said, "THAT'S not going to calm me down, it's going to do the opposite!" Sure enough, after five minutes she was shrieking, laughing, biting the bed covers, etc. Today I'll have her help me with laundry, maybe vacuum, do some carrying, etc. to see if it works a little better.)

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If you made a big deal about sensory, they likely focused on that. Intake for these places is not always going to be the same. They may really go on a basis of what strikes them as bothering you the most and then go from there. You've talked about a lot of sensory and hyperactivity, and that is what they seem to be focused on.

 

OT is or can be very paitent and quality of life focused, not necessarily diagnostic focused. I think it's moving more toward qualify of life and not moving toward digging and uncovering issues unless the parents ask for that and seek out an OT that does that. You may or may not have primitive reflexes or praxis issues with this, though they are common. I would put the onus on the therapist (gently) to explain her approach. Tell her that you know people who have had these undiscovered issues with their kids, and the only way they knew was through a deeper evaluation than what she seems to have done. Tell her that makes you nervous and that you don't want to work on the surface level of the issue if there is more underneath. Some people find that threatening (no matter how nice you are--some people are much better at giving information in their format than actually listening and answering what you are asking), and she may tell you to find another therapist, so be prepared to have someplace else to seek answers. If she's your only option right now, then you need to be careful about how you ask or simply wait and see what happens over the next couple of weeks. But, we can only go so far in interpreting what she intends to do or her philosophy. If you couch it as "From what others have told me, I expected...but I don't see that happening here...could you explain" could be one way to get more answers.

 

The therapeutic listening calms some kids. It's just a tool. We tried many tools while getting therapy. We were honest about what worked and what didn't, and the therapists tried to evaluate effectiveness as well. Things don't HAVE to be evidenced-based to work--sometimes they just make the kid happy, and that brings it's own synergy to the process.

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Also, if you have just one option or an hour drive, does that mean you are rural? Many professionals in rural areas multi-task, and they are kind of isolated in regard to having someone to talk to and network with about new therapies. If this is the case here, please be gracious even if you end up not liking the therapy. I grew up in a very rural area, and those professionals are just as dedicated, sometimes more so (and sometimes they want to be there and are massively overqualified too). But they have to be all things to all people, and that's a tall order.

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Thanks, I'll ask those questions at our next appointment! I wish I'd gone in more prepared!

 

Yes, we're in a rural area. Surprisingly I was able to get an appointment within 2 weeks of calling, and have been able to set up weekly appointments. There is only one therapy/gym room, and she was the only kid there, no one was there before us, although there was someone in the waiting room when we left. Where do the other children go?? They have 7 therapists too, so I was really surprised that we were the only ones.

 

I was impressed with the therapist we met with, she seemed very nice, very patient even though Anna was all over the place and not responding to requests, and she's been there for 10 years. She and most of the other therapists are SIPT certified. Her daughter also has ADHD (she actually works there, and was playing with Anna while we talked.) So that in itself made me like her even more...All that isn't enough, obviously, but it's the reason I'm willing to give her the benefit of the doubt for now. :)

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The public school kids are crammed into after-school sessions!  I think you have a huge advantage that you can schedule day-time hours. 

 

There may be kids who schedule around pre-school or around other therapies. 

 

It took me a long time to figure out sensory with my son, though we were always doing some good things and having things basically work out.  But it took me a long time and I am still learning. 

 

I think there can be trial and error involved, and also kids change, and something that used to work does not work the same way anymore, for whatever reason.  It seems to be very evolving. 

 

But it has been worthwhile, too, it has been worth some effort. 

 

But for my son he is not primarily a sensory kid, it is just one thing, and I prioritize some behavioral strategies and fit the sensory strategies into the behavioral strategies.  This can have to do with what order we do things in, and choosing to do some things when he is at his best place in terms of regulation.  But it is not only sensory regulation he needs, he needs emotional regulation and other kinds of regulation (I guess cognitive?  I don't even know) and so sensory is just part of it. 

 

It is like -- if sensory is just NOT going well and he is totally wound up or totally withdrawn, then that is a problem.  But the rest of the time - it is not a big deal, and he is mostly in a good sensory place (as he is not primarily a sensory kid). 

 

But he can have other reasons to be wound up or withdrawn, that are NOT sensory, and I do not like approaches that act like sensory is the only possible reason for a child to not be in a "ready to learn" state.  I have gotten that attitude a little bit locally (more from random people than from actual OTs).  And it makes sense, b/c there are kids who have much more severe sensory challenges and that IS the case for many kids, that it IS all sensory.  But that is not my son and so it is not a helpful attitude to me.  But I am happy when other kids are doing very well with something that is meeting their needs :) 

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Many OTs are moms who want to work part time.  I wouldn't read too much into that.

 

Dd's 1st OT had her doing a variety of things (listening cds, vestibular, etc.) before she felt she would be ready for metronome work.  It might be something similar, where it's not so much that she's saying they'll never do IM as that she's just not *ready* for IM yet.  It's just an approach to treatment.  And some OTs will weave it in.  

 

A half hour is not a thorough eval.  Did she do fine motor, the BOT, or any kind of more involved testing?  It may be she's going to do more testing as she goes.  It's sort of an unfolding process.

 

You'll just ask her next time whether she tests for retained reflexes and whether she was planning on doing that...  Some OTs don't really, and some do.  

 

I think it's ok to go to someone, see what progress they can make, let the process unfold, LEARN, and then keep your ears to the ground about other options and other things other OTs do.  Our OT right now is fine, and sometimes I think oh we're going to max out what she can do and then we are HITTING THE ROAD!  I don't think you should stay if you're not making progress, but it's also a progress that unfolds.  One half hour session is not even a normal eval.  That was more like get to know each other, see if you like her, and then she'll get more in-depth.  And I think you can let that unfold, kwim?  Being close is good, and she's telling you a lot of good, standard things.  She may have more tricks in her bag than what you know about.  She's good at telling you thinks to do and assigning homework, so that's good.  

 

It's a process that unfolds as they get to know you.  Our OT that ds has been seeing for a couple months now just yesterday gave me some really good ideas, and I'm like WHY did you not tell me these things months ago?!?!  But the point was, she needed time to understand the situation, for things to come out, and she could help us problem solve.  And sometimes problems are so embarrassing, you don't talk about them, feeling like they're more like you're fault than maybe some clinical issue.  Like if my ds bolts or spends a whole day flying airplanes or spinning, is it *my* fault or is something going on?  And you would think with an ASD label in our mix I wouldn't have a hard time saying it's the ASD, but I do, lol.  It's still kind of embarrassing.  But when it finally slipped out, she had some good suggestions for us, kwim?  

 

So it's a process that unfolds.  Might as well milk this person while you're going, learn and do with her everything you can, and meanwhile make calls to that farther city just to see who you might go to when you've exhausted this person's skills.  But the reflexes, those I would be asking about.  Those are foundational neurologically.  You can test for them yourself if you google to find out how.  

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I've also found that because of high OOP costs for private therapy many parents just rely on what the schools are willing to provide. Those co-pays and deductibles do add up but for our family, we have chosen to make the financial sacrifices necessary to afford them. I'm driving an '04 Toyota with 227k miles on it so I don't have a lot of sympathy when some late-model luxury vehicle-driving mom claims that she "just can't afford" private therapies for her SN child. I keep my opinions to myself, but I'm definitely thinking that I could rearrange her budget to free up some cash.

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That's very helpful kbutton, thank you. I don't think they were planning to do TLP there, she just told me to look it up and said it might be helpful, I assume for home use.

 

She actually recommended we start with tactile activities, then the heavy work, then a little vestibular, and then go back to the heavy work, really focusing for the longest on that work. In the list of activities she had things like wheelbarrow walks, tug of war, wrestling and jumping on the mattress. We've done all of those things and they do make her go into her hysterical silliness mode. She LOVES them, but I've never seen them calm her.

 

 

We didn't see these things help much at first either - it was a cumulative effect over a few weeks, I think, that makes the difference. Now I can "treat" hyperactivity or lack of focus with activities like this (and we try to do at least 10-15 minutes at one time before stopping) and I can see the difference. Also, the first time or two that we tried something new and exciting, she would lack the emotional regulation to deal with it, but then when we go back to it after she's used to the activity, it's more effective.

 

 

Other proprioceptive work does, though...Massages, bear hugs, and recently joint compression, she just loves. So maybe I need to just try out some of the listed activities and ditch those that seem to have the opposite effect? We haven't tried heavy lifting/pushing, I'll give that a try. Maybe the combo of the three types of work will also make a difference, it's definitely worth a try.

 

Our OT has said several times that we have to figure out what works for HER and that every child can react differently to different things. I keep a journal of things we do that help and if I notice something has a big impact, I'll note that and use it again. 

 

 

I'm trying to figure out what they're actually going to do during these appointments, other than let her play which, you know, we could do elsewhere for cheaper. Are they evaluating her while she plays? Or will they actually incorporate mindfulness into it? I was hoping the therapist would give me a better idea of what to expect while we were there, but we went a half hour over today and I didn't have the time to ask.

 

See if you can stand in the session and watch and ask questions while they work together. I don't often get to do that because of my other kids but when I do I'm able to see the purpose behind activities. I'll ask how something is helpful and get great little tips and suggestions to help me at home as well. I'll also see the progression of activities - swing first to calm and bring focus, then a heavy activity, then swinging to calm down again, then sensory like shaving cream or other thing, then end in swinging. My daughter will also tell me little things like, when we get on thus and such a swing, I have to hold my head like this, or we got in that swing again but this time I laid like this. So to her it is fun and play, but the OT is specifically doing things with positioning, etc. that are making a difference to her.

 

I've also been told it's similar to exercise - it's not always what you see right away as much as it is the effect over time. And over time, you see the effect faster. Now I can see her attention start to scatter and do 15 minutes of wrestling on the floor (where she tries to push/pull me over) and when we are done, she is calmer, more organized and focused.

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I've also found that because of high OOP costs for private therapy many parents just rely on what the schools are willing to provide. Those co-pays and deductibles do add up but for our family, we have chosen to make the financial sacrifices necessary to afford them. I'm driving an '04 Toyota with 227k miles on it so I don't have a lot of sympathy when some late-model luxury vehicle-driving mom claims that she "just can't afford" private therapies for her SN child. I keep my opinions to myself, but I'm definitely thinking that I could rearrange her budget to free up some cash.

Dude, which my car would make it to 227K, lol.  It's shy of 150K, a year older than dd, and it needs another engine something (overhaul? dunno).  I keep telling dh the cheapest car to drive is the one you own, but putting money into this one gets touchy.  But we like it and probably will.  Just not sure it will make it to 227K.  :D

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