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mamashark

Talk to me about Transitions

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We're having an uptick in behaviors around transitions, and while we are in the process getting some things to implement some suggestions from the OT, I wanted to see what you guys use that work for your kids who struggle with this.

We used to, in the fall, have difficulty getting him out of the house. We've since developed a daily routine that involves leaving the house almost every day for "regular" things that never or almost never change (weather last week really screwed us up) so that routine has helped a lot. Anything outside of that routine is hit or miss, though. And now it's transitioning away from the fun things he's doing and getting in the car to come home that is becoming more difficult.

In fact, it took me 30 minutes in the parking lot yesterday to get him to buckle up to go home after OT. At the end of the session, my son became non-responsive because he couldn't manage the transition to leave. In a typical moment like this I take a lot of time and a lot of stares from strangers while I wait and talk to him (mirroring his emotions tends to help some) and give him choices (and using the time timer, which I didn't have on hand this time) and work our way towards the transition (usually the car so I can leave wherever we are). This time, the OT was like, I'll take time out of my schedule to help you get out the door. In the end he OT had this smug "I helped" look on her face and I'm thinking, great, you rushed my non-responsive kid in the midst of a mini-meltdown out the door and now I'm being held hostage in the car with my other kids quiet and patiently waiting for his behavior to abate so we can drive away. He has to calm down from these fits before I can leave because no one has been able to give me a safe option for buckling him that he cant undo and without my husband to drive so I can physically sit next to him and keep him buckled, there's nothing else to do but wait.

I realize that he didn't sleep as well the night before, and that he hadn't eaten super great so far that day, and that he has a cough, so it's possible he's coming down with something, but as legit as these triggers are for him, I also realize that I need better strategies for these difficult transitions. 

BTW, these moments have reduced dramatically - what used to be behavior that I dealt with several times a day, has slowly worked its way over the past year to a couple times a week. I just feel like I need some tools to work on the transition moments. Even if it's a slow process, I need to work towards something! The play therapist claims that what they are doing together should help with transitions, and honestly, that might be why we've seen the improvements we have seen so far, but in the meantime I need some tools!! 

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How old is he and is he verbal?

If he can communicate fairly well, I suggest using the Ross Greene Explosive Child approach and see if that helps.  

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36 minutes ago, Pen said:

How old is he and is he verbal?

If he can communicate fairly well, I suggest using the Ross Greene Explosive Child approach and see if that helps.  

He's 6 and he's very verbal when he wants to be. The SLP won't even work with him because she refused to do more than the CELF-5 with him and he's able to pass that well above age level. I just haven't had the energy to find one who is willing to look deeper for me.

I'll look into the Explosive Child and see what I can glean from that, thanks!

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https://www.marybarbera.com/video11/

This is a great article.

I am going to add, I have a thought that he may be getting overstimulated in OT and need a break or a fun activity.  If they are focused on getting a lot done this can be a factor.

Another idea is to have a slower transition with a pause in the waiting room.  Does he want to snuggle with you a minute or something.

Another idea is to have a high-value transition item that you can keep in the car, but — ideally you may have something that can be doled out as positive reinforcement for staying buckled.  Depending.  

Another idea is look at what you are transitioning TO and make that a nice transition.  Maybe stop at a park or something.  

Another idea is to make a schedule and show it.  An option is to have something on the schedule you can do if there is good behavior.  Know your child, and I would NOT do this if he might be coming out of OT overstimulated.  Then a break or lower-demands or something during OT are really what are needed.  

Another strategy can be giving kids something to carry or some responsibility.  Holding the door, stopping at the curb — these can be responsibilities that give kids something to do and get their hands busy.  It can make the walking part a little more structured.  

I do think there is a real chance this is a stress reaction of some kind related to OT and maybe OT needs to be adjusted.  It’s not always on the kid to change.  Sometimes it’s on the environment, which — in this case would be OT.  

She sounds like a little too much of a fixer.  Fixers are really good but sometimes they can be a little impatient or overly focused on their agenda of goals.  They can want to get through their targets.  Well ———— getting through targets is really important, but sometimes what is realistic isn’t a super-high number.  

I have had some wonderful experiences with OT, and one bad/inappropriate when the woman just did not really know how to work with my son.  It’s something to be open to considering.

The other thing is transitions can just be hard.  It’s not always a sign of a big problem or something to fix, to have a more emotional child who needs a bit more on the emotional side. There is a balance at least.  If it’s something where taking a little more time and going slower would help, that is okay.  

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It is really great to track also.  

I am a pretty behavioral person, so I don’t mean track just eating and sleeping and look for a ton of connections there.  Yes look for patterns or days where sleep was particularly bad.  Or if it’s always bad maybe you are looking at addressing sleep.

But anyway — demands are something to track.  Is OT high demands, maybe too high demands.  Is it when there are things in a row and overall car time adds up.  Is it more on days when the routine has more changes in it.  

You can also do things like track all your similar transitions and look for things that contribute to good transitions. 

Also remember to take a deep breath and be ready to be patient and nurturing.  Without an effort, it is very natural to expect to have a difficult time, and this can mean we may be less patient or.... breathing shorter which can make our kids breathe shorter if they co-regulate to us.  Nobody is perfect, but it can be worth it to try to notice, it can be better than it would be otherwise.  If you are doing this you also need to take a stress break later in the day.  

Edited by Lecka
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Really unless you are really suspecting food sensitivities or a sleep problem, then — there are a lot of other reasons besides food and sleep.  And sometimes there isn’t a reason for one particular day.  But patterns are worth trying to figure out.  

Just the way you said the OT after bringing him out, casts suspicion on her not being super-attentive to his regulation needs while he is in with her.  And she could be really good!  But sometimes really good people aren’t a good fit.  It’s too bad but it can happen.  

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It is also a pet peeve of mind when some people think everything is sensory.  Sensory demands are only one type of demand.  They are important but they are still only one type of demand.  

Edit:  if it’s known for a certain kid that it is basically all sensory for them — okay, that is different.  But it’s too simplistic for many kids who are being challenged by many different kinds of demands. 

Edited by Lecka
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I liked the Bright and Quirky Conference talk by the author of this book, though I’ve never read the book itself:  Getting to Calm, The Early Years: Cool-headed Strategies for Raising Caring, Happy, and Independent 3-7 Year Olds https://www.amazon.com/dp/0990430618/ref=cm_sw_r_cp_api_i_XZAwCbFYVXZ7W

Whereas I have read and successfully used Ross Greene Explosive Child approach.  Google him, and in addition to books , you’ll find website with lots of information.  

 

With th my son at that age in addition to pre-announcements of transitions to get him ready, we specifically used to take some extra time between therapy session and driving to play a game such as chess (which he discovered as a chess set in waiting room of a therapist ).   Also had snacks along that he could have.  

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Lecka, thanks for your thoughts, I have been pondering the OT stuff since it happened, because this is the second difficult transition after OT (two sessions in a row).

One thing the OT told me the last time was that when I am able to get babysitting and thus join the session, he's more anxious than when I'm in the waiting room with the siblings. Which is kind of funny because she is NOT happy with the fact that I can't get babysitting for my other 3 kids more often (dude, I'm a homeschool mom to 4 kids, it's not like I can just dump all the kids at school and do whatever I want!). 

We also, long story, but she wanted us to use the ILS focus system but there was a massive breakdown in communication (not going to say they lied, but it might boil down to that from my perspective...) and when my husband and I put our foot down and said no, she said ok, we'll do the calm and prep program during sessions for free. Then this last session she told me, "he's on session 9 already! This means he's basically completed the program and we'll start over when that happens! He's making tremendous progress!" (that sounds like a flag to me - like the progress in a listening program is replacing observation of actual progress?) She's also told me that the multi-sensory input from the headphones was the cause for him to improve in a motor skill/task during the same session - which may very well be so, but it is also possible that she was able to scale it back and give him practice so that he was then able to do better by the end of the session.

I don't know. I'm pleased with some aspects of the OT (her ability to scale difficulty level up and down on the fly, listened to my concerns/goals and put MY goals into her plan) and displeased with other aspects (communication, follow through, communication, consistency in skills presented, communication...)

I hate to turn this thread into an evaluation discussion of the efficacy of this particular OT, but I do wonder how I should proceed. I am having difficulty getting my thoughts into coherent words about what I want to see change/shift for OT and we have agreed to 4 more weeks (at twice a week) before we stop, at which point I am planning on taking a break (and likely not going back due to communication issues... did I mention I'm not happy with communication?). 

She did email me with thoughts about the past two transition difficulties and her suggestions for going forward include:

  • A weighted blanket during the fine motor task, which she ends each session with, to help him calm after gym time. ((My thought on this - he's hated all weighted blankets/pets I've tried with him in the past and he much prefers compression - I might just have him wear his compression shirt to all OT sessions))
  • She wants to talk to me about using the brushing protocol again ((she is calling it 'informal' because she's not specifically trained in wilbarger protocol - I did this protocol about a year and a half ago now and it made a huge difference in his ability to accept any touch. He went from recoiling against touch to accepting hugs and willing to sit on laps, etc. I'm not sure one way or another what I think about restarting this.))
  • She wants to create a transition routine with choices for him to make at the beginning of the session and a requirement that he follow those choices at the end of the session to address the specific aspect of the transition from OT to the car.

I will say that her email did show me that she is accurately seeing the anxiety/ocd/rigidity in his behavior that I am seeing, so at least we are seeing the same things. But she did not say anything about the possibility of the demands of OT being too much for him or any mention of disregulation.

Other things we're implementing per her suggestion - Today I am finishing putting together a "calming box" with a few fidgets/bubble timer/other mindless things for him to mess with as he calms down from an emotional outburst. I am also hopeful to use this box as a preventative measure when he begins to get disregulated in other settings and needs to take a break. we already have a "calm down closet" space for him with a sensory bin, body sock, lava lamp, etc. for him to utilize when he wants "alone time" and he uses it with great success at home. This new box will hopefully be a travel kit.

We have an iPod coming in the mail tomorrow, and we are going to try a picture scheduling app (as recommended by the OT), and put the time-timer app on it (since we use those timers regularly for transitions at home), and some calming music for him to choose, etc. for an easy take it with us picture schedule/timer/calming tool. My husband said the kids he works with in his school utilize technology similar to this and that he thinks it would be beneficial.

I have opportunity to observe the next OT session, so that will be interesting, (not be a part of - but observe through a window set up for parent observation). 

I also have opportunity to have a half-hour parent session next week if I want to in order to discuss progress/goals so if I want to change something, that will be the best time to discuss it. Like I said, I'm just having some difficulty organizing my thoughts about what I'm seeing and what I would rather see.

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36 minutes ago, mamashark said:

We have an iPod coming in the mail tomorrow, and we are going to try a picture scheduling app (as recommended by the OT), and put the time-timer app on it (since we use those timers regularly for transitions at home), and some calming music for him to choose, etc. for an easy take it with us picture schedule/timer/calming tool. My husband said the kids he works with in his school utilize technology similar to this and that he thinks it would be beneficial.

This works great for a lot of kids. 

37 minutes ago, mamashark said:

She wants to create a transition routine with choices for him to make at the beginning of the session and a requirement that he follow those choices at the end of the session to address the specific aspect of the transition from OT to the car.

We did this as a way to learn to use a schedule.  It can also be a way to be really concrete about choices.  This is a good thing to do, but here is my opinion.  This is a way to teach using and following a schedule, it can help to implement your iPod schedule stuff.  Because -- yes, some kids get on board with these on Day 1.  For other kids it is a long process to get on board with the whole schedule thing.  It was a long process for my son, but it is a great thing to be working on.  For my experience with a kid not so on board..... it needs to have a lot of real choice, real fun, real preferred activities.  Otherwise it is just another thing he maybe isn't that in to, that when he sees it he may think "oh no, not this, I hate this."  

Okay, so anyway..... I do not at all see that as something that is going to address transition issues in the next month, unless the "demands" issue is also addressed.  That is, if there is a demands issue.  I am just guessing.  But anyway -- this is a long-term strategy for a lot of kids (though great for kids where it works on Day 1 ------ and is his primary issue maybe anxiety?  because this is maybe a Day 1 fix then.... if it's more that it is noticed he doesn't transition well, then no, this is probably not going to be any kind of Day 1 fix).

But it is great for learning to follow a schedule.  It is also great for introducing choices and letting kids see that they will get to make some choices ----- but there may need to be actual preferred activities as choices, not just therapy choices.  

So I think she is right to think it's good, but I am doubtful that it is going to work really fast, and I also doubt it will address too high of demands if that is an issue.  

A schedule can also really help kids to see that reinforcement is coming soon, whether this is a choice or a preferred activity that is on the schedule..... and this is something that can be really helpful about schedules, too.  

But schedules are making things visible.  What is ON the schedule is still a pretty big part of it.  You can't take a schedule that isn't working great, and make it visual, and expect that to solve every problem. 

Also, it depends on "how" a kid is rigid, but my son was rigid in a way where he did not want to make the transitions in the schedule when it was time to make them.  So he hated schedules for a while even when they were a goal.  This isn't every kid and some kids take to them a lot better.  But I am mentioning it.    

 

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4 minutes ago, Lecka said:

and is his primary issue maybe anxiety?  because this is maybe a Day 1 fix then.... if it's more that it is noticed he doesn't transition well, then no, this is probably not going to be any kind of Day 1 fix).

Yes, his primary issue is definitely anxiety. And when I have tried to use a visual schedule at home it has been helpful, but limiting in that the pictures I had printed were never the right thing, or the specific transition I needed scheduled was just not fitting, or some other related reason...thus I am hopeful that an app will give me more flexibility there. But I think that maybe you're right, what is ON the schedule needs to be a big part of the fix. I went back in the OT eval and goals and see that the underlying assumption of his anxiety is "impaired tactile processing". Which I could see before, but I'm also seeing that tactile processing improve (he's able to tolerate an increasing number of clothing textures, for example) and I'm NOT seeing an improvement in anxiety, AT ALL. In fact, we've seen his OCD type anxiety symptoms INCREASE over the past 2 weeks along with a severe disruption to the schedule because of weather and illness. 

14 minutes ago, Lecka said:

Also, it depends on "how" a kid is rigid, but my son was rigid in a way where he did not want to make the transitions in the schedule when it was time to make them.  So he hated schedules for a while even when they were a goal.  This isn't every kid and some kids take to them a lot better.  But I am mentioning it.    

We do have this issue when I try using the time timer out of the context of a regular routine. So for example, if I randomly set the timer for 10 minutes, expecting him to transition from a preferred activity to a non-preferred activity at that time, it's not going to work. So I will watch for this with working on a schedule too. 

 

21 minutes ago, Lecka said:

I do not at all see that as something that is going to address transition issues in the next month, unless the "demands" issue is also addressed.  That is, if there is a demands issue. 

So if I'm understanding you here, what you're saying is that if the demands of OT are too high for him, all the schedules in the world won't help him transition better on day 1, because the schedule doesn't resolve the high demand issue. I'll have to think more on that and see what I can notice next time at OT when I can observe. I need to start tracking the difficult transition times to see what I can figure out.

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Fwiw anxiety here helped by b-vitamins and meditation. Meditation helped by watching Star Wars where some Jedi use it.  Your son may be too young for the Star Wars part. 

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4 minutes ago, Pen said:

Fwiw anxiety here helped by b-vitamins and meditation. Meditation helped by watching Star Wars where some Jedi use it.  Your son may be too young for the Star Wars part. 

 

Thanks for this and OMG what a brilliant idea to learn meditation by watching Jedi use it in Star Wars! He's TOTALLY too young for Star Wars, we can't even get through a single episode of veggie tales...but I might have to see if I could find something similar in usefulness.

We are a hair's breathe away from his pediatrician prescribing meds for the anxiety, and believe me we've tried a variety of supplements. I'm currently grappling with a variety of options, both mainstream and not, because to a big degree the anxiety is getting in the way of the other developmental stuff. 

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For me personally the top supplements in re anxiety have been B vitamins in general, and particularly Inositol.  And zinc.  

There are probably books or films for younger children that could help with making meditation seem positive and show what to do.  It doesn’t have to be long.  1 minute can be a big help.  

I just remembered that at that age my son responded well to 2 Mr Rogers videos.  Both had things about self calming.  I can’t recall titles.  We had the DVDs and played them pretty often.  Also a same picture book over and over was soothing.  Also a daily nap was necessary. And frequent high protein snacks then and still.  

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And we had  a  Babar the elephant yoga thing.  

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BTW the Bright and Quirky Conference talks are still in till 10 tonight— you might get some ideas there too.

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Using a visual schedule can have different meanings to it for different kids.  For kids who are anxious, it can let them see what is coming up, and this helps reduce anxiety.  For other kids, and my younger son would be more this way, it is a way of showing "this thing you like is coming up," and this would provide motivation for him to make it through a less-preferred task.  It was a really concrete way to show that after the less-preferred task, the more-preferred task was coming.  And "task" is a generic word, it could be a snack, it could be anything on the schedule.  Or it can be a bit of both.  

Okay, so a visual schedule can be set up different ways.  

It can be set up to include choices for the child.  Choices can be motivating for a child.  It can be set up to include reinforcement (something the child likes), embedded in the scheduled, by FIRST doing a less-preferred task, and THEN doing a more-preferred task.  This is a "first, then" strategy, there are "first, then" cards.  It is a whole big thing.  

But all of that stuff is not necessarily going to be included for a kid who only needs to see a schedule in order to know what is coming up.  

So ----- it is a support that can be a lower level support, or it can be a medium level support.  

Some kids only need a pretty low level of support.  There are kids who only need a visual schedule, but don't need the extras.  They can adapt, and all they need is a visual schedule.  

Okay, so ------ let's say this low level type of support is tried, and it seems like it works.  Then that is good.  Then it seems like the child is being supported appropriately.  

But let's say it doesn't go that well.  What does that mean?  It doesn't mean "well this child is being difficult because we tried this support and it didn't work out great."  It never means that.  It can mean:  the child needs more support;  the child needs help to learn to use the support;  the child needs more time to learn to use the support.  

Now -- if you think of some kind of schedule that would be preposterous for your child, then it is obvious ------ providing a visual schedule will not magically make your child able to follow that schedule.  

Sometimes the schedule itself needs to be adjusted, by adding in more preferred tasks, more choice, etc.  

Or maybe there is a big non-preferred task that is wreaking havoc.  Maybe that non-preferred task has got to be addressed in some way.  This could be -- limit it, drastically increase supports around it, make therapy goals around it, etc.  But if that is the case, the schedule isn't going to make that quit being an issue.  

It's the same if your child is overstimulated.  Then ------ why is your child overstimulated.  You have to take steps back sometimes, to answer that question.  

You can't really start with your child being overstimulated, not care why, and just go ----- okay, starting with this child, at this moment, let's ignore why he has gotten to this point, and just move forward as if the past hour didn't happen.  I mean -- you can in the moment.  But afterward, you probably want to go "hey what was happening that caused my child to be so overstimulated, and how can we change that, so next time, he doesn't get so overstimulated in the first place."  You have to look at things across the whole day.  And -- when there is a problem in transitioning, then looking at what happened right before the transition, is something to look at.  I am *just guessing* that your child is overstimulated or otherwise not regulated when he comes out of OT, and that something needs to change while he is in OT to keep him from getting so overstimulated or unregulated.  I am *just guessing,* because it could be something else.  But it is some guess to make.  

Something else to think about is:  how does your child do other times he is away from you?  It sounds like the therapist thinks he does better when you are in with him?  Okay, there are at least two things that could be going on here off the top of my head.  One, your child is anxious away from you.  How does that fit with other times you are away from him?  At home or away from home?  With siblings or without siblings?  Etc.  Two, you may be providing supports of some kind to your child, that you are not really aware of.  You really could be providing some kind of support.  Then that is maybe a "lack of support" kind of issue.  Maybe you are noticing things the therapist isn't.  It is possible.  

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Some people report that physiotherapy sports tape on children’s backs is calming.  Or tinted glasses if light is an irritating factor.  Or soothing  transition music .

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 I just saw your other post.  

I would encourage you to consider anxiety medication.  I have known a lot of people whose kids did well with it.  I have known kids as young as 5 to start.

I think it is very worth considering.  

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If you had said in your original post that anxiety is a known factor and medication is being considered..... 

I think that is a top thing to consider.  It just is.  

I think you can see what other supports are needed, how well OT goes, etc, with medication.  All of those things would still be considerations.  But you could see how your child does with medication.  

I am going to see if I can find an article about connections between sensory sensitivity and anxiety.  

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7 minutes ago, Lecka said:

Something else to think about is:  how does your child do other times he is away from you?  It sounds like the therapist thinks he does better when you are in with him?  Okay, there are at least two things that could be going on here off the top of my head.  One, your child is anxious away from you.  How does that fit with other times you are away from him?  At home or away from home?  With siblings or without siblings?  Etc.  Two, you may be providing supports of some kind to your child, that you are not really aware of.  You really could be providing some kind of support.  Then that is maybe a "lack of support" kind of issue.  Maybe you are noticing things the therapist isn't.  It is possible. 

Ok this - this is highly possible. He is very much anxious in most settings when I am not with him. He will not even go back with the OT without me walking him back, still. He is highly anxious about separating from me in other settings. I'm so sick of well-meaning adults telling me to just leave him and he'll adjust. I finally have the teachers he works with regularly to a point where they have stopped suggesting that. And yes, It is HIGHLY possible I am providing supports for him that I do second nature, while he is in the session. The OT wants me to join and participate and I wonder if the little things I say or do support his regulation in ways that she doesn't notice. I am going to watch for that and make notes of things I would have said/done instinctively while watching through the 2-way glass to see if there's some support missing there.

12 minutes ago, Lecka said:

But let's say it doesn't go that well.  What does that mean?  It doesn't mean "well this child is being difficult because we tried this support and it didn't work out great."  It never means that.  It can mean:  the child needs more support;  the child needs help to learn to use the support;  the child needs more time to learn to use the support.  

 

I am learning this about a lot of things. It's like learning a new rule book for kid development/function. Thanks for explaining all this so thoroughly!

4 minutes ago, Lecka said:

I would encourage you to consider anxiety medication.  I have known a lot of people whose kids did well with it.  I have known kids as young as 5 to start.

Yes, and I believe my Dr. agrees with you, my own psychologist agrees with you. Here's the thing, I have a lot of opinions and gut feelings about various things. For example, the diet we're following. It was a gut decision and we have seen it be hugely beneficial. I really do feel like I need to address the anxiety bit, but my gut feeling after listening to the Dr. describe the prescription options to me (and her perspective was as a parent of a kid similar to mine who is now in college and she used these meds with him) my gut just says that isn't the right option. I don't know why, I can't explain it, but there's something about those prescription options that feel wrong for our situation. I'm not sure what the "right" option is, but those aren't it at the moment. 

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1 minute ago, Lecka said:

If you had said in your original post that anxiety is a known factor and medication is being considered..... 

I think that is a top thing to consider.  It just is.  

I think you can see what other supports are needed, how well OT goes, etc, with medication.  All of those things would still be considerations.  But you could see how your child does with medication.  

I am going to see if I can find an article about connections between sensory sensitivity and anxiety.  

That connection - sensory sensitivity and anxiety - is the basis for what the OT is doing with him. 

I am just really conflicted about the meds. We are currently using L-Theanine (per the dr. as a tier 1 medical intervention for anxiety) 3 times a day and from my perspective, it "takes the edge off". So I'm reading and thinking and researching a next possible step when the L-Theanine we have runs out. One option I've considered is increasing the dosage. One option I've considered is Prozac (feel really unsettled about this, this is the "tier-2" option from the dr.). One option I may consider is cbd oil ("tier-3" option from the dr.). I'm just not sure at this point.

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If there are things you would instinctively do/say that you notice when you watch, I think that means you are usually providing supports!  

Providing supports is good.  It is good for kids.  

It can be good to try to figure out what those supports are, though, because that is how you can identify issues, tell other people about what supports are effective, etc. 

 

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980623/

Okay, I did find this by googling.... but this is kind-of my understanding.  

It's NOT known that for ALL kids, treating sensory will result in improvements in anxiety. 

It is observed that some kids will have anxiety improve with treatment of sensory.  

It can also be observed -- that when any one piece improves, it can lower the amount of total stress on a child, and then other areas will improve.  And sensory can be stressful.  This isn't enough to say "they definitely, always go together."  

So anyway -- I have an opinion, that if working on sensory helps a child's anxiety, then that is great, that is wonderful.  But I also have an opinion, it doesn't always help that much, and it can be hard to really tell, and it can be hard to know, even if it does help (unless -- it is just dramatic) it is hard to know if is was a direct kind of help, or if it was a lessening of overall stress.  

I don't know the wording, but it's like cognitive load.... if anything can lessen the burden of total cognitive load, it is going to help.  That doesn't necessarily mean that whatever that thing was was the only problem, but it does mean the improvement happened overall.  And sometimes having a little improvement with 5 different things can add up to a total big improvement.

It's kind of a question of:  is there only one thing going on, and it's pretty serious..... or could there be 5 different things going on, at varying levels.  It's really hard to know.  

When a child is feeling anxious, it can be one big thing, or it can be the total of a lot of little things.  

I don't like it when people who think everything is sensory think that everything is sensory, explain everything totally by sensory, don't consider alternate explanations, don't consider things that could also be helpful in addition to sensory, etc.  It is a pet peeve of mine.  

But I think to know what it will be for a specific child, it takes trying things, and being open.  

I think too, for parents, comfort level needs to be very high.  We have to follow through on things, and it is hard to follow through on something where there is not a comfort level.  I think that is being realistic, if you have a gut instinct against something, it's not going to be good to try.  But maybe over time some things will change, and maybe you will be more comfortable with things you aren't now, or maybe you will get a better idea of why you had a bad feeling.  

Anyway -- I understand there is a theory that sensory sensitivity is a cause of anxiety.  I think it is for some kids, but I don't think it is for all kids, even when there is sensory and anxiety.  I don't think it is known yet.  I think it is a theory that makes sense, and it seems pretty obvious to work for some kids, and helping sensory is also obviously a good thing to do, but I don't think it is always the solution that some people think it is.  I just do not.  

I think it's also really easy to have a passive view of a child, as just something that some sensory thing happened to or not, and it leaves out a lot of other kinds of approaches or supports, that aren't all about sensory.  It can limit the variety of supports or approaches that are used.  

 

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There is other stuff out there besides sensory and medication, also.  

Some are:  change the environment to be less stressful, provide supports, behavioral intervention (this includes desensitization from what I understand -- increasing exposure to something in tiny amounts that aren't too stressful), cognitive-behavioral, meditation, exercise...  

https://www.socialthinking.com/Products/The Incredible 5-Point Scale - 2nd Edition  This can be used for anxiety.  

http://www.5pointscale.com/smart_ideas.htm  This shows the anxiety curve.  

Those two links are something that was used in the school district we used to live in, and I have seen presentations about them.  It has stuff on this about noticing signs of anxiety, etc, and these are the kinds of things you might be doing, and other people might not be aware of.  

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Honestly I think with a lot of homeschooling parents (I do not homeschool), they are providing really good supports, and then, people see the child *with* the really good supports, but don't realize, and then the child presents as doing so well without supports, and then less supports or lower-level supports are seen as all that is necessary.  

Where if the child was recognized as receiving a lot of supports already, and doing okay or not-so-great, then more or higher-level supports would be seen as necessary.  

And how messed up is it, if this is the case, that the OTs solution is to have you come in the room and provide those supports?  

The thing is, it IS a good solution.  But it's also not quite identifying things that maybe another person could do or be aware of.  And it's also taking *with you in the room* as your child's true capability, and *without you* as an aberration, when maybe *without you* is his true capability, and *with you* is how he does when he is well-supported.  

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40 minutes ago, mamashark said:

Here's the thing, I have a lot of opinions and gut feelings about various things. For example, the diet we're following. It was a gut decision and we have seen it be hugely beneficial. I really do feel like I need to address the anxiety bit, but my gut feeling after listening to the Dr. describe the prescription options to me (and her perspective was as a parent of a kid similar to mine who is now in college and she used these meds with him) my gut just says that isn't the right option. I don't know why, I can't explain it, but there's something about those prescription options that feel wrong for our situation. I'm not sure what the "right" option is, but those aren't it at the moment. 

You seem to have a very good gut instinct, fwiw! I also think you do a good job of putting words to those gut concerns even if you aren't sure what to pinpoint as the problem with trying meds right now. Just to encourage you in that regard! 

I would be leery of the OT wanting to do an unofficial brushing protocol if you've done an official one already. So, I have two different experiences with my kids on this issue. One definitely needed some things integrated with brushing and some other OT stuff. The OT had to try a number of combinations of things to get a response, and the brushing protocol was super effective. He had some reflexes that needed integration, but we mostly knew they were there due to how it looked when things came together--outright looking at the reflexes didn't show a lot on the surface. But, wow, when those things slipped into place, they were Big Deals. 

My other kiddo, who has more traditional anxiety, seemed to have integrated reflexes for a long time because he didn't react to certain things. Well, he had some areas where he was so behind (but yet had splinter skills) that he had to have more development before signs of unintegrated reflexes emerged (he has a connective tissue disorder that we didn't know about then, so his whole body has a different sensory experience from the norm). 

Anyway, sometimes you're just waiting for data to show up and validate or explain that gut feeling. Sometimes things get fixed by stumbling into the next thing. You are doing a good job, and I encourage you to keep checking your gut. 

Sometimes though, it's gut plus misinformation. Example: I was rightly concerned about anxiety with my kids. I knew some of it was sensory. However, I also had absorbed the message that ADHD stimulant meds provoke anxiety. I guess they can. But in my kids, they lessen anxiety because my kids can control themselves better. Lesson learned on getting enough data points and on talking about my areas of concern effectively rather than letting worry make me delay effective treatment.

So, maybe you need to ask more questions about the anxiety meds, and your gut hasn't caught up to that yet--it's stuck on the problems and there is something it "needs to hear" that it hasn't heard yet. 😉 But your gut is still good and still reliable! 

12 minutes ago, Lecka said:

It's kind of a question of:  is there only one thing going on, and it's pretty serious..... or could there be 5 different things going on, at varying levels.  It's really hard to know.  

When a child is feeling anxious, it can be one big thing, or it can be the total of a lot of little things.  

I don't like it when people who think everything is sensory think that everything is sensory, explain everything totally by sensory, don't consider alternate explanations, don't consider things that could also be helpful in addition to sensory, etc.  It is a pet peeve of mine.  

But I think to know what it will be for a specific child, it takes trying things, and being open.  

I think too, for parents, comfort level needs to be very high.  We have to follow through on things, and it is hard to follow through on something where there is not a comfort level.  I think that is being realistic, if you have a gut instinct against something, it's not going to be good to try.  But maybe over time some things will change, and maybe you will be more comfortable with things you aren't now, or maybe you will get a better idea of why you had a bad feeling.  

I think it's also really easy to have a passive view of a child, as just something that some sensory thing happened to or not, and it leaves out a lot of other kinds of approaches or supports, that aren't all about sensory.  It can limit the variety of supports or approaches that are used.  

Lecka always has good advice! I do think it can be both/and and not just one thing. 

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Of possible interest below—from googling zinc and anxiety  and copying a few links.    May do same with inositol 

(I am personally inclined to look at what might be low that are required nutrients for function and to try to optimize that before treating symptoms.  I think that theanine, Prozac,  etc treat symptoms rather than meeting possible low levels of vitamins or minerals) 

 

Jul 10, 2017 · However, for those suffering from Obsessive Compulsive Disorder ... (B6), folate (5- MTHF), vitamin C, zinc, magnesium, inositol, and taurine are ...
 
 
by M Piao · 2017 · Related articles
Abstract. Mood disorders have many forms, from anxiety attacks, depression, Obsessive Compulsive Disorder (OCD) to Post Traumatic Disorder (PTSD). ... It was reported that zinc deficiency induces depression, while supplementing with this mineral improved mood as well as cognitive function.
 
 
by AJ Russo · 2011 · Cited by 24 · Related articles
Feb 7, 2011 · Patients were asked to rate their depressive behavior such as; irritability and anger, lack of ability to focus/concentrate, racing thoughts, trouble sleeping, light sensitivity, migraines, OCD behavior, intrusive thoughts, overall anxiety, disorganization, panic, obsessive behavior, and overall anxiety.
 
 
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Googling “inositol anxiety ocd”  a few links:

by J Levine · 1997 · Cited by 216 · Related articles
Side-effects were minimal. Since serotonin re-uptake inhibitors benefit obsessive compulsive disorder (OCD) and inositol is reported to reverse desensitization of serotonin receptors, thirteen patients with OCD completed a double-blind controlled crossover trial of 18 g inositol or placebo for six weeks each.
 
 
Jul 10, 2017 · A promising finding, inositol is an effective natural therapy for OCD ... Furthermore, a study on mice indicated a reduction in anxiety where ...
 
 
It has been used by some individuals to reduce anxiety; chemicals in the plant may interact with the .... Inositol treatment of obsessive–compulsive disorder.
 
 

Inositol often impacts the performance of the neurotransmitter serotonin. The serotonin levels are very important regarding anxiety and depression. ... This revealed inositol was an effective treatment for a variety of anxiety disorders including panic disorders, OCD and anxiety.
Carrying out the compulsive behaviors tends to ease feelings of anxiety, while repressing compulsive behavior causes stress. Several integrative interventions, such as N-acetylcysteine, glycine, and inositol have been shown to reduce OCD symptoms in clinical trials.
 
 
Feb 23, 2017 · Anxiety, Panic Disorder and Agoraphobia. Based on ... In one study, patients with OCD took 18 grams of inositol or placebo daily for six weeks.
 
 

Oct 10, 2018 · Inositol may be beneficial for many anxiety disorders. ... attacks, agoraphobia, and symptoms of obsessive-compulsive disorder

 

Of possible interest below—from googling zinc and anxiety  and copying a few links.    May do same with inositol 

(I am personally inclined to look at what might be low that are required nutrients for function and to try to optimize that before treating symptoms.  I think that theanine, Prozac,  etc treat symptoms rather than meeting possible low levels of vitamins or minerals) 

 

Jul 10, 2017 · However, for those suffering from Obsessive Compulsive Disorder ... (B6), folate (5- MTHF), vitamin C, zinc, magnesium, inositol, and taurine are ...
 
 
by M Piao · 2017 · Related articles
Abstract. Mood disorders have many forms, from anxiety attacks, depression, Obsessive Compulsive Disorder (OCD) to Post Traumatic Disorder (PTSD). ... It was reported that zinc deficiency induces depression, while supplementing with this mineral improved mood as well as cognitive function.
 
 
by AJ Russo · 2011 · Cited by 24 · Related articles
Feb 7, 2011 · Patients were asked to rate their depressive behavior such as; irritability and anger, lack of ability to focus/concentrate, racing thoughts, trouble sleeping, light sensitivity, migraines, OCD behavior, intrusive thoughts, overall anxiety, disorganization, panic, obsessive behavior, and overall anxiety.
 
 
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I was just thinking of this, and got a sinking feeling, but.... your child right now, at the pediatrician, wherever, that you are there with him..... could be coming across as a child *with no supports* who is, possibly, getting supports from you.  It is hard to know, but -- it is possible that you are providing a level of support that might be provided by a 1:1 aide in a school setting.  I have a child who used to have a 1:1 aide.  I provided a lot of support when he was not at school.  When it sounds like parents are providing a lot of support -- it's impossible to know, but it is possible that can be even up to the amount of support a 1:1 aide would provide.  

And guess what..... at school they would want to know what support I was providing at home.  *They* definitely thought I was providing support at home, probably equivalent to a 1:1 aide.  

And the doctor will know this even if -- I am just there with my son.  Because I have that extra information, the doctor will take that in, and not just assume my son is getting no particular supports beyond maybe a little more on the parenting side.  Really -- supports ARE just more on the parenting side, but that is not how a lot of people think about them.  They think they are special things that parents could only do if they had special training (or something).  

Anyway -- I do NOT think that all problems will be solved if you just tried medication.  I actually don't think that.  It comes across to me more like maybe more supports etc. would still be needed even with medication, even with some improvement from medication.  That's my opinion.  

But if other people think it's not that serious, don't recognize the supports you are providing, etc, they might think *just* medication would be the main thing, and not be thinking about things the same way.  

And then -- I know this happens.  Sometimes people have an attitude "in a year or two the parents will try medicine," and they can have an impression like this is a kid who will do great with medication and wouldn't necessarily need more.  But -- that is just a guess.  And it's probably not as good of a guess if they are also not aware of supports you are providing.  

If you are really honest with them and they really see everything you see with your child, then I would not think that.  But it is really easy for things to be kind-of glossed over in an office with a child who is doing well because the parent is there.  

I hope not, but it is possible I think.  

Edit:  Really -- I think sometimes people are just waiting around for parents to try medication, and -- it's like they just don't see think of other things, that they would think of otherwise.  

Edited by Lecka
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If you could catch just one approx 30 minute (or the first 10 minutes) of a Bright and Quirky talk, I’d recommend the Laura Markham one, day 2, I think.

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1 hour ago, Pen said:

If you could catch just one approx 30 minute (or the first 10 minutes) of a Bright and Quirky talk, I’d recommend the Laura Markham one, day 2, I think.

 

Why is that even though others like Ross Greene have great techniques, you can read those in books .  But the way Markham talks and smiles, her general affect,  comes through in the audio visual presentation in a way that to me seemed very special.  

 

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I just rewatched it myself—at about 19 minutes in Markham talks about transitions. 

 

Another speaker spoke of need for PDF:

playtime, downtime, what was F?  Anyone remember? Freetime?

 

anyway, with a lot of visits, a lot of therapy, sometimes there isn’t much time for playtime and downtime and whatever the F was.  

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My now just turned 17 yo just arrived home.  He has come a long way from when he was 6. But transitions are still hard. I’m not sure details are relevant, but some things that help:

1) I remind myself that his behavior is not about me.

2) there’s food in the oven almost ready

3) he’ll get some downtime by taking a shower 

4) I’m not going to object to electronic downtime because I know he uses it to unwind, especially music, and asmr

5) I expect he’ll go down to the basement to lift weights , which is a good playtime / downtime activity for him

 

 

if I were dealing with what you described I might just plan a 30 minute transition into the day after OT.   Maybe snack and story time that all of your children could gain from....  Maybe a nap in car time before driving home...

 

maybe something special to do that occupies hands and mind during the ride (something on an iPad perhaps that is special for during ride home ?  Or something tactile, if safe for in car? An etch a sketch?)  and helps to work on calm and sitting still...

Edited by Pen
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We started meds for anxiety at age 5.  Best parenting decision we ever made.  Totally changed the life of my child and the life of our family.  We should have started them 18 months earlier than we did, but I was reluctant to put such a young child on psychotropic medication until we pretty much hit a crisis.  

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8 hours ago, Terabith said:

We started meds for anxiety at age 5.  Best parenting decision we ever made.  Totally changed the life of my child and the life of our family.  We should have started them 18 months earlier than we did, but I was reluctant to put such a young child on psychotropic medication until we pretty much hit a crisis.  

But the side effect list is scarier than what we live with!!! I have a dr. appointment already set up for him in 2 weeks. I'll try to make a decision by then. I am also am concerned about the stories of kids who just can't come off of them. (Well, I guess that's adults too) .

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I am really not an expert, but I wonder if you are hearing about a lot of different drugs and conflating them?

There are definitely drugs with serious side effects, that are pretty common.

There are definitely drugs that have a few kids with some side effects.  

But I am surprised to hear you have heard many stories about anxiety medicine being a problem.  

Is it possible people are not using medication names, and they aren’t giving the medication you think they are giving?  

It makes a really big difference.  

I think two weeks is really fast to go from a gut feeling against it, to trying it.  I don’t think you need to put that stress on yourself.  

But if you think it is anxiety then I think it just is what it is, this is a recommended treatment for some kids, and it can really help some kids.  

I do think it would be good to discuss your concerns with your doctor and find out exactly what medication would be recommended.  Ask about what your doctor says about side effects.  Maybe ask your doctor about a source of information she thinks is reliable.  

I am just going to be blunt.... I hear like what you are saying you are worried about, with Risperdal.  Risperdal is a big deal.  It is the right choice for some kids, but it is a big deal.  

For ADHD medication, I have heard lots of concerns about kids not eating enough, and needing to plan meals around when they take medication.  I have heard several concerns about a medication or dosage not working out and having a frustrating experience trying to find a correct dosage.  

For anxiety medication, I have never heard anything bad like that.  Caveat:  for young kids.  I wouldn’t say this with adults, but the adults are taking more heavy-duty medication and seem to also be taking a lot of different medication — I have major concerns here, but it is night and day to anything I have seen or heard with elementary school age kids.  

Really what I think is — I am reading your posts and I have a personal impression like..... for a support level, do you think your child could be in public school Kindergarten, and make all the needed transitions through the day, with just a visual schedule?  If you do think this... I think something is not a good fit with the OT, or OT is just really hard, or something like that.  If you don’t think this, I think you are kind-of getting suggestions assuming that support level.  If you’re actually providing more than that support level, you need a little higher level of suggestions.  That is just how it comes across to me, but it is really hard to know.  If you don’t have a sense like your son would be able to make it through the day in public school Kindergarten, then do you have any paper trail to reflect that?  If not — that is what it will come across like, and that means — a lower level if support is needed.  

I could be really off on this, but to me — having to calm down after OT doesn’t fit into making transitions super-easily throughout a Kindergarten school day.  

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7 minutes ago, Lecka said:

For ADHD medication, I have heard lots of concerns about kids not eating enough, and needing to plan meals around when they take medication.  I have heard several concerns about a medication or dosage not working out and having a frustrating experience trying to find a correct dosage.  

 

And to be honest, we have this experience in our history with our eldest daughter. We had issues with her not eating, and with a dr. not listening to our concerns and about having to change . dosages and finally ditching the meds entirely because of anxiety and the dr. basically telling us that if we wanted her to calm down and be able to focus, the anxiety was just what we had to deal with. Bum deal. So we said no thanks and we do other stuff now that works *enough* for homeschooling. She could do public school if we needed to with minimal supports, it would just take a lot out of her. 

10 minutes ago, Lecka said:

for a support level, do you think your child could be in public school Kindergarten, and make all the needed transitions through the day, with just a visual schedule?  If you do think this... I think something is not a good fit with the OT, or OT is just really hard, or something like that.  If you don’t think this, I think you are kind-of getting suggestions assuming that support level.  If you’re actually providing more than that support level, you need a little higher level of suggestions.

Support level - I do not believe that he would be able to make it through a day of public k. There are absolutely people who think he could, but the two with degrees after their names don't. The psychologist told me we'd need an IEP for public K, and that homeschooling is a better idea. The pediatrician flat out told me to homeschool, but part of that was because she said one-on-one support is always better than what the school can offer, even in the most intense placement settings. The OT has not voiced an opinion on the matter except to be impressed at how much I'd already implemented prior to coming to her. (I can't tell you how many times I'll ask for advice on an issue, tell her what I already do, and get the response "you're already doing everything I can suggest in that situation.) Well-meaning random people in our lives are of the opinion that "it might be a difficult transition at first, but that's what the public school teachers are trained for, he'll adjust", so we realize that "adjust" means different things to different people and without degrees behind their opinions, they don't count.

I get to observe OT today, so I'm curious to see how that goes, and will be speaking to the OT about difficulty/support levels afterward.

I am doing research on inositol and might try that as a next step option prior to meds and see how that combined with the picture schedule works. I will say the psychologist a year ago wanted him to have a picture schedule for every day, and I've fallen off from doing that this school year because of the work it took to keep it up. I'm hoping the ipod schedule app helps make it simpler.

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19 hours ago, mamashark said:

 

Thanks for this and OMG what a brilliant idea to learn meditation by watching Jedi use it in Star Wars! He's TOTALLY too young for Star Wars, we can't even get through a single episode of veggie tales...but I might have to see if I could find something similar in usefulness.

 

Our pediatrician recommended a book called Sitting Still Like a Frog. It's readily available on Amazon and comes with a CD that has short calming meditation exercises. For awhile, my kids would all listen to a section at bedtime. The CD has many exercises that just require sitting and listening and breathing, etc., and each is just a couple of minutes long.

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9 minutes ago, mamashark said:

And to be honest, we have this experience in our history with our eldest daughter. We had issues with her not eating, and with a dr. not listening to our concerns and about having to change . dosages and finally ditching the meds entirely because of anxiety and the dr. basically telling us that if we wanted her to calm down and be able to focus, the anxiety was just what we had to deal with. Bum deal. So we said no thanks and we do other stuff now that works *enough* for homeschooling. She could do public school if we needed to with minimal supports, it would just take a lot out of her. 

 

I'm sorry this happened to you. It seems to me that this experience is the fault of the doctor, not the meds themselves.

When we started ADHD meds, we went through five, I think, different types/brands of meds over several months before we landed on the right med at the right dosage for DS. Our pediatrician listened and was patient and called us after hours to discuss options and was willing to work with us until we found the med that worked the best with the least side effects. Since then, we have a new pediatrician (we moved), who also listens and has made adjustments as needed over time.

Sometimes finding the right doctor can be as hard as finding the right medication.

 

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5 hours ago, mamashark said:

But the side effect list is scarier than what we live with!!! I have a dr. appointment already set up for him in 2 weeks. I'll try to make a decision by then. I am also am concerned about the stories of kids who just can't come off of them. (Well, I guess that's adults too) .

The side effect list is scary, but it's a list of things that can possibly happen.  Most are pretty darn rare.  We were dealing with a child who had a panic attack if I walked into a different room, which was annoying and constraining.  When we started medication, we realized how pervasively the anxiety had been effecting her.  She really had not learned any new skills from age 2 to age 5.  She was an extremely precocious two year old, so at age 5 she still looked normal, but I had been kind of alarmed at the lack of progress.  She started learning again when we started meds.  She started interacting with other kids socially.  Before, she wouldn't really play.  She looked much less autistic when we started meds.  That was probably the biggest surprise to me.  It didn't change her personality, but it did allow her to be with other people more like she was one on one with me.  The entire family was much less stressed.  We all slept better.  She ate better.  I hadn't realized how paralyzed she was by anxiety until it lessened significantly.  

And we have taken her off of them a couple of times to see if she still needed them.  She does.  But it's not true that she "couldn't come off of them."  It's better to taper slowly and gradually, but at least once it was more of a "just realized she forgot to take them for several days, so let's just keep not taking them."  She has never had any problems coming off of them.  It's not as if it makes them addicted.  Not saying it's the right choice for you or your family, but for us, it was a really good experience and we hadn't realized how many areas of life were compromised by the anxiety until it was gone.  

We did briefly try meds for ADHD.  I'm not sure it's an accurate diagnosis, but she does have a processing speed that is really bad, and we were wondering if the meds might make learning easier for her and lessen some of the anxiety that she does still deal with (although it is at a level that we can all, her included, cope with, rather than being crippling).  The non stimulants basically had no effect, and when we gave her a stimulant, she acted as if she was on speed.  It was a shocking personality change and behavior which was very much not like her.  She did process more efficiently, but she was also more distractable, so the effect was pretty negligible.  We gave her one dose of the stimulant and were like, "Nope.  Not doing that again."  We might explore those classes of meds when she's old enough to drive, because I do worry about the effects of her really slow processing speed on road safety, but I don't know if it will work any better then.  So I also understand trying meds and deciding that they don't work for you or your child or your family.  

Edited by Terabith
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9 hours ago, mamashark said:

I am doing research on inositol and might try that as a next step option prior to meds and see how that combined with the picture schedule works.

 

Research more than just inositol.  During anxiety and related I think the emotions and brain activity themselves deplete various vitamins, minerals and related.  

I have had anxiety in my life be extremely responsive to supplementation—but not necessarily just one item supplemented.  

For example, nail biting was a problem for me in times past — when on a good B-complex vitamin plus significant extra inositol and zinc, it’s not like a bad habit to be overcome or resisted, but rather the anxiety behind it vanishes, and l have no desire whatsoever to bite a nail.

9 hours ago, mamashark said:

I will say the psychologist a year ago wanted him to have a picture schedule for every day, and I've fallen off from doing that this school year because of the work it took to keep it up. I'm hoping the ipod schedule app helps make it simpler.

 

Maybe you could work on that with him as school.  It is very important learning to be able to make a schedule, do things for self regulation, etc.

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