Sustained Attention, Ritalin and my son

[PeterPan]

Well, I'm not going to say that she doesn't have EF issues, but I'm going to go against the grain and suggest (again, I think) that you find a professional that deals with RAD and start asking some difficult questions. She can have both. 

 

The things you are telling me are strikingly similar to the stuff I hear from acquaintances and friends dealing with RAD.

 Wow, I missed that she's adopted.  Definitely you want all things on the table.  Sometimes you can find a psychologist who specializes in RAD and adoption issues and has extra experience there.   Or maybe just schedule a one hour consult, just to talk it through.  2nd opinions are good.  Things get missed.  

[sbgrace]

Anna's mom, I'm glad you're getting help too! I don't know re: RAD but my son has a lot of parallels. He makes poor/"naughty" choices (as I'll explain below). He's not adopted. And he doesn't make those sorts of choices when medicated, and he really doesn't want anyone unhappy with him.

 

OhElizabeth,

You mention tent. Do you think a smaller area is better than, say, a bedroom? I cleared out his bedroom. I thought I would make it into a place to go. Maybe I need to use a tent or closet though?

 

Am I supposed to be practicing tools like the breathing and that 5, 4, 3, 2 1 calming sequence? I've been practicing those in calm times.

If I have a sensory box like you describe...how would I ever tear him away?

 

Thank you for all the specific links and help on the tools and zones above. I see the flip book page. Wouldn't that be later? We haven't even practiced most of the tools. I also don't know how to know which tools we'd put in which zone..is that up to him? I'm going to look for that facebook page you mention.

 

The chewy tube..that's not zone practice. I just noticed he's doing a lot of chewing on his hands/shirts and found his old chewy tube. Then both of us noticed that it calms him a lot. In fact, it's taken him out of red. He is now seeking it out. Today he was trying to get settled for a subject and spontaneously got up to get it for example. I noticed he also stomped his way over to get it and back (sensory). I believe there is a lot of sensory aspects to his stuff. We can't afford private OT, let alone ABA. He was recently ruled disabled and got a medicaid waver through the state to receive services. This is new. The waiver won't pay for ABA, but they will cover OT supposedly. I don't know how it's all going to work (availability, quality, etc.) but I'm so hoping we can get help. Behaviorist was on the list of therapies too, and I think we need that (more on that below). I have to get assigned a case manager who then makes an appointment to determine what therapies he needs and provide me with lists of providers for that. So we're a ways out from help, assuming there is help available.

 

I will definitely log. That's a good idea. I should have started that long ago. It feels good to have something to do.

 

He wakes up in yellow (wild/excited) often. Ritalin completely takes all that away, which confuses me. What is it then?

 

If I don't do Ritalin, often those wake up yellow days are complete losses like you describe (yellow/red bouncing all day/never regulated). That's part of why I started this thread. I don't get it. I think sensory is probably part of it. But how much I don't know.

 

In that zone he does impulsive, wild things like run yelling into his sleeping brother's room....editing out the church mess up story....He said he felt hyper as soon as he got up there. He was embarrassed/regretful/sorry afterward. I don't know what to think. I will say that he had a big/long/tiring day the day before, and I had to wake him and rush him to get to church.

 

But, generally, he's just like that sometimes. He's erratic and impulsive, and seems to like being wild honestly. But I think he's also dysregulated in those times, because he can't seem to get under control in those modes no matter what and he's quick to go from that to meltdown (and back and forth). I don't know??? It's probably a mix. I'm sure more than half the church thinks he's just poorly parented. It was a really bad day in front of a 100's of people.

 

MomatHawk-- I get what you're saying about patterns that are hard to change. I see that here. I will look at the deescalation thing. We have major meltdowns too, though that wasn't the issue yesterday. Actually, scratch that. He did have a meltdown after church.

 

 

[PeterPan]

Aw SBGrace, that's hard.  I can see why you're embarrassed.  It takes time to get used to owning the ASD label in public and to get people aware enough that they look at you with compassion or a bit of understanding.  If they didn't chew you out, maybe they know?  I would hope/trust they had a gracious response.  I think his behavior is pretty common with ASD.  He's not the only one doing this.  For kids his age and older with ASD, and that's what they're doing.  So if they've met anyone dealing with this, they've probably already seen it happen.

 

That would be wonderful if they'd set you up for OT!  It might help MUCH more than you anticipate.  Some OTs will be trained in Zones.

 

Ok, you can jump around in Zones.  There are lessons close to where I was pointing you where they work on making the books, logging, etc.  You can do lessons from the end, then go BACK to the beginning and do those lessons.  Kuypers recommended flexing it like this.  It sounds like you've gotten stuck.  Go to some of those later lessons, pick one you think would get him moving forward, print the pages for it, and go for it.

 

As far as the space, yeah a room.  He's a big big for a tent.  My ds is only 4' tall, kwim?  Maybe his sleeping room, maybe a spare room. Maybe a closet.  You can collaborate on that.  Main thing is to bring in things that make him feel good.  We spent a week and went through several stores (walmart, dollar tree, etc.) looking for things that were good for sensory.  Then we put it all in a bin.  If he has access to that bin 2-3 times a day as part of the plan, you could use the Time Timer app to help him break.  Transitioning is an EF thing and it's a rough deal with our kids sometimes, sigh.  They get stuck and don't want to get off, even when they need to.  So to work on transitions, that's a good thing, but to set him up so he can probably succeed at the transition, even better.  Like you could agree to use the Time Timer app for him to go to his sensory bin, but say the gig is we stop when the timer app goes off.  And you'll get to go back AGAIN later.  Just work on it.  

 

If he's having that much with the chewing, I would want some of that all the time.  Like don't hide that one thing there, if having that handy is really stabilizing.  That's like my ds' kindle.  Don't even ask how many hours a day that thing is on.  And he'll sometimes have objects he totes around.  Those stabilizing things allow.  

 

For my ds, the OT stuff we're doing gets that overall level chilled enough that then the box is like a help instead of constant necessary intervention, kwim?  Hopefully you'll get a good OT.  For my ds, Therapeutic Listening has been really powerful.  Part of the reason it works is because it stimulates the vestibular system.  Totally calms them down, chilling that sensory seeking.  So maybe if he's chewing so much, maybe that's something to ask for.  Different things are potent for different people.  As you evaluate people, just ask what extras they do like that.  

 

I'm guessing the people in the service get that something is going on.  They don't think you're a bad parent.  That is so far out from the norm, that there isn't a "bad parent of the year" explanation for it, kwim?  Are they accepting of SN in your church?  That's very special (and somewhat unusual) if they are.  

 

Are they going to be taking the ritalin up higher?  

[sbgrace]

Aw SBGrace, that's hard.  I can see why you're embarrassed.  It takes time to get used to owning the ASD label in public and to get people aware enough that they look at you with compassion or a bit of understanding.  If they didn't chew you out, maybe they know?  I would hope/trust they had a gracious response.  I think his behavior is pretty common with ASD.  He's not the only one doing this.  For kids his age and older with ASD, and that's what they're doing.  So if they've met anyone dealing with this, they've probably already seen it happen.

 

That would be wonderful if they'd set you up for OT!  It might help MUCH more than you anticipate.  Some OTs will be trained in Zones.

 

Ok, you can jump around in Zones.  There are lessons close to where I was pointing you where they work on making the books, logging, etc.  You can do lessons from the end, then go BACK to the beginning and do those lessons.  Kuypers recommended flexing it like this.  It sounds like you've gotten stuck.  Go to some of those later lessons, pick one you think would get him moving forward, print the pages for it, and go for it.

 

As far as the space, yeah a room.  He's a big big for a tent.  My ds is only 4' tall, kwim?  Maybe his sleeping room, maybe a spare room. Maybe a closet.  You can collaborate on that.  Main thing is to bring in things that make him feel good.  We spent a week and went through several stores (walmart, dollar tree, etc.) looking for things that were good for sensory.  Then we put it all in a bin.  If he has access to that bin 2-3 times a day as part of the plan, you could use the Time Timer app to help him break.  Transitioning is an EF thing and it's a rough deal with our kids sometimes, sigh.  They get stuck and don't want to get off, even when they need to.  So to work on transitions, that's a good thing, but to set him up so he can probably succeed at the transition, even better.  Like you could agree to use the Time Timer app for him to go to his sensory bin, but say the gig is we stop when the timer app goes off.  And you'll get to go back AGAIN later.  Just work on it.  

 

If he's having that much with the chewing, I would want some of that all the time.  Like don't hide that one thing there, if having that handy is really stabilizing.  That's like my ds' kindle.  Don't even ask how many hours a day that thing is on.  And he'll sometimes have objects he totes around.  Those stabilizing things allow.  

 

For my ds, the OT stuff we're doing gets that overall level chilled enough that then the box is like a help instead of constant necessary intervention, kwim?  Hopefully you'll get a good OT.  For my ds, Therapeutic Listening has been really powerful.  Part of the reason it works is because it stimulates the vestibular system.  Totally calms them down, chilling that sensory seeking.  So maybe if he's chewing so much, maybe that's something to ask for.  Different things are potent for different people.  As you evaluate people, just ask what extras they do like that.  

 

I'm guessing the people in the service get that something is going on.  They don't think you're a bad parent.  That is so far out from the norm, that there isn't a "bad parent of the year" explanation for it, kwim?  Are they accepting of SN in your ct's

 

Thank you for that response! I was hesitant to type what happened. I may go back and edit it out. Yes, the public aspect is hard and getting harder as he ages. The church has been, by far, the most accepting and inclusive experience he's had since we moved here. Anyone interacting will see the disability, and I inform anyone working with him. But those who have only seen him in passing wouldn't have known anything. Well, until this week anyway!

 

I will look at switching around the book. I don't know, though, if we're stuck as much as I didn't know what I was doing the first time through. I'm actually feeling hopeful as we practice. He responds really well to positive feedback, and he's proud of his zones work (I'm really playing up every inch of recognition or response he makes).

 

I don't know. I was going to use the room. But I actually may try to get a tent. He'd probably like to have an enclosed space.

 

I love the idea of the Time Timer. Transitions are a major issues. I like that idea. That could make a sensory box work! It would probably help with other stuff too.

 

 We did private OT until insurance said they would no longer run cover it as a medical expense because he was at compulsory school age. He's also always touching things and/or wanting to carry things. Both that and the chewing seem to be grounding/something he seeks, but they can also be distracting. Hopefully we get OT and they can help me figure that out for him. There is a lot of crashing/bumping/jumping happening too. I'm thinking of trying a sensory diet on my own.

 

Thank you so much for your help on this thread!

[PeterPan]

Chewing gum?  Spry is good.

 

Don't get too bandwagony on the tent thing.  I just had it around, so I used it.  Why don't you ask *him* what would feel good?  Dark is good.  He may already have a preferred space.  Collaborate.  :)

 

Bummer on the OT, sigh.  Glad you're not getting coverage.  You know it's totally whack, but even with tons of gymnastics, etc., my ds was STILL crashing into things.  The Therapeutic Listening and the kinesio taping both seem to help.  Both are good sensory input.  I think anything you do in that vein is good.  

 

It's wild, but with the neurofeedback (Zengar) they do a before and after scan.  His scans at the start are typically very jagged, and then after the session the overall levels have decreased and smoothed slightly.  If he wears his kinesio tape that day, when he goes in the scan will be SMOOTH, totally smooth.  Wild, eh?  Like literally, he seems more zen with the tape and his brain IS more zen!!  And the tape is a cheap thing to try, kwim?  

[Tiramisu]

Sorry. I didn't see this thread until now. But like Storygirl's ds, the stimulant helped impulsivity and emotional regulation most of all. It really has not helped attention as much. For her, the motivation is not there, though. She's a 13 yo and her personal interests rule her mind. She also has a hard time focusing on one thing. It seems to be less frustrating for her to get something done if she's doing two things at once....but it's a lot more frustrating for me just to watch because I can't split my attention easily.

 

Our new med management person wrote out a list of three options for how to use the stimulant and prescribed long and short acting. Once dd's high heart rate is eliminated as a problem, she may even recommend talking a long acting and a short acting at the same time, which sounds strange to me. 

 

Since we stopped the stimulant for a few weeks and then started up again, I am not seeing the very clear noticeable results I saw previously. 

[sbgrace]

Chewing gum?  Spry is good.

 

Don't get too bandwagony on the tent thing.  I just had it around, so I used it.  Why don't you ask *him* what would feel good?  Dark is good.  He may already have a preferred space.  Collaborate.   :)

 

Bummer on the OT, sigh.  Glad you're not getting coverage.  You know it's totally whack, but even with tons of gymnastics, etc., my ds was STILL crashing into things.  The Therapeutic Listening and the kinesio taping both seem to help.  Both are good sensory input.  I think anything you do in that vein is good.  

 

It's wild, but with the neurofeedback (Zengar) they do a before and after scan.  His scans at the start are typically very jagged, and then after the session the overall levels have decreased and smoothed slightly.  If he wears his kinesio tape that day, when he goes in the scan will be SMOOTH, totally smooth.  Wild, eh?  Like literally, he seems more zen with the tape and his brain IS more zen!!  And the tape is a cheap thing to try, kwim?  

 

Gum is good for calming, but distracting too.

Wow in the taping. Is there somewhere I could learn about that myself, or would I just hope I find an OT that knows about it? I would like to try I think. And so interesting the listening helped propioception! We did private pay OT from the point he aged out of first steps until insurance refused to run it through their deductibles anymore. He did do listening therapy with one OT, but she had tapes missing and didn't really seem to know what she was doing. Hmmm...that gives me a lot to think about!

 

Sorry. I didn't see this thread until now. But like Storygirl's ds, the stimulant helped impulsivity and emotional regulation most of all. It really has not helped attention as much. For her, the motivation is not there, though. She's a 13 yo and her personal interests rule her mind. She also has a hard time focusing on one thing. It seems to be less frustrating for her to get something done if she's doing two things at once....but it's a lot more frustrating for me just to watch because I can't split my attention easily.

 

Our new med management person wrote out a list of three options for how to use the stimulant and prescribed long and short acting. Once dd's high heart rate is eliminated as a problem, she may even recommend talking a long acting and a short acting at the same time, which sounds strange to me. 

 

Since we stopped the stimulant for a few weeks and then started up again, I am not seeing the very clear noticeable results I saw previously. 

 

Interesting! That is what I am seeing with the stimulant now--great response with hyperactivity, impulsivivity, and emotional control/regulation but less help with attention. In his case, I think it's the autism that makes his own interests so captivating and his EF so weak that he doesn't focus on the matter at hand well. I don't know, though. I'm sorry she isn't responding as well as she did initially with the stimulant. Is it the same dose? I hope it works out to be as good a response, or even better perhaps with the combining, as she had before.

 

I'm going to call the doctor today to ask about trying 2 split short acting doses. I'm not going to ask to increase, because I'm concerned about potential anxiety and because he seems a bit too sedate on it sometimes. Weird because the step down dose from his current dose did very little!

 

[PeterPan]

The RockTape site has videos, and we're doing it the way they show for your back, with two strips running parallel to the spine.

[Tiramisu]

Gum is good for calming, but distracting too.

Wow in the taping. Is there somewhere I could learn about that myself, or would I just hope I find an OT that knows about it? I would like to try I think. And so interesting the listening helped propioception! We did private pay OT from the point he aged out of first steps until insurance refused to run it through their deductibles anymore. He did do listening therapy with one OT, but she had tapes missing and didn't really seem to know what she was doing. Hmmm...that gives me a lot to think about!

 

 

Interesting! That is what I am seeing with the stimulant now--great response with hyperactivity, impulsivivity, and emotional control/regulation but less help with attention. In his case, I think it's the autism that makes his own interests so captivating and his EF so weak that he doesn't focus on the matter at hand well. I don't know, though. I'm sorry she isn't responding as well as she did initially with the stimulant. Is it the same dose? I hope it works out to be as good a response, or even better perhaps with the combining, as she had before.

 

I'm going to call the doctor today to ask about trying 2 split short acting doses. I'm not going to ask to increase, because I'm concerned about potential anxiety and because he seems a bit too sedate on it sometimes. Weird because the step down dose from his current dose did very little!

 

 

She's on rather low doses. The APN prescribed 10 mg focalin XR which is what she was taking before. And now 5 mg short acting.

[sbgrace]

She's on rather low doses. The APN prescribed 10 mg focalin XR which is what she was taking before. And now 5 mg short acting.

 

She'll do the 5 mg on top of the 10 mg? I hope that gives better response. My son needed 20 mg to really benefit, but we didn't try 15.

[Tiramisu]

She'll do the 5 mg on top of the 10 mg? I hope that gives better response. My son needed 20 mg to really benefit, but we didn't try 15.

 

Eventually, the doctor suggested trying that. For now, we can do the 5 mg short-acting twice a day, the 10 mg  XR only, or the 10 mg am with a pm 5 mg short-acting.

[Kat w]

I have alot of first hand experience with RAD.

Have gone through the classes so we could be house parents ( relief volunteers for the f/t house parents)

Of a HOUSE FULL OF RAD BOYS.

 

I do not see this as RAD.

We adopted a foster teen at 13 who bolted back to the birth family at age 18. ( he's not the one in my signature , thsts my bio son)

 

The foster child was suspected RAD and all of his 6 bio siblings had RAD. we visited them often and were in the trenches with their adoptive families. So. I feel I can speak to this.

 

NOT RAD IMO.

 

Rad is rad. Granted there are varying levels...this does not even strike me in the slightest with even the most MILD form of RAD.

[Kat w]

I'm so glad you ladies were willing to talk about these things.

 

I really learn so much from all of you.

 

Sharp cookies here :)