Advice on handling psych eval?

[eternallytired]

DS9 and I went in for an initial meeting with the psych this week, and she's scheduled us for two days of testing.  I've been trying to handle this like I handle everything else with him: explain exactly what we're doing and why, not make a big deal out of it.  He seemed fine before the appointment, but he was SO anxious afterwards.  Since he has two (nonconsecutive, for good or ill) days with 4-hour testing blocks coming in a couple weeks, I thought I'd ask if anyone has any advice on helping to reduce his anxiety and make the process more pleasant overall.

The psych mentioned that DS might want to take a favorite fidget along because he's very wiggly (swinging his legs for much of the appointment, shifting a lot and fidgeting with his shirt when she was doing some initial evaluations with him)--but we don't have fidget toys around the house because he can just get up and walk around or roll on the floor or whatever if he needs that sensory outlet (input?).  (I take that back: we have a TheraBand tied around the legs of his chair at the dinner table because he could NOT sit through a meal otherwise, and it was driving DH nuts.) I'm not sure if I should run out and get something (wiggle cushion?), or if I just hope for the best.

Any BTDT advice is welcome.  Thanks, all!

[KSera]

As far as fidgets, they are easy and inexpensive to get, so I would probably pick up at least some thing for him to have. I would expect the tester to have things like that there though, too. maybe not because of Covid. I wouldn’t go overboard with finding things to help him stay still though, because you want the tester to get an accurate read on how he actually is. If he can’t stay still in his seat, that’s important information. As far as the anxiety, we were super low-key about it and told them we were going to do some testing to find out how they learn best so that we could use that information for deciding the best ways to teach them. We told them the testing would probably be interesting and involve doing a lot of different kinds of activities. Fortunately, they did find it interesting, which I expected they would or wouldn’t have said that.

[Lecka]

I think if you buy something you would want to think you would introduce it at home before the appointment.  

So if you got a wiggle cushion -- would you be interested in making him sit on the wiggle cushion at home?  For any block of time?  If you honestly don't need/want it at home, it can be an obligation you don't want.  

Also would you take a wiggle cushion to other places he might need to sit?  Church?  A restaurant?  The library?  

These are things to think about for any item!  

Do you WANT to introduce it and keep it in rotation?  This won't matter for some kids, who adjust quickly and easily to things.  For other kids they have to get used to things.  For other kids -- you don't want it to signal something if you are "getting such-and-such out" or "bringing such-and-such" if they associate it with -- only certain kinds of things.  

Then another thing to think about -- is it something you can take to many settings?  

Then another thing to think about -- is it something that some other kids the same age also like?  This can depend, too, sometimes it really doesn't matter.  But sometimes it does matter and is worth thinking about.  

You also want to know that the item is going to help to provide focus, and not be a distraction in of itself.  You want it to be a tool and not a toy.  It can *also* be a toy, but it shouldn't be something where in practice it is something that is played with in a distracting way, if what you want is something where hands are kept busy, or there is something to do, but most of the time there is still active listening while doing it.  

Another issue is -- things that are played with can be really, really good for discussion or listening times.  A lot of times that is the time there is an issue, and not necessarily -- staying seated while writing -- then writing would be using hands.  

So then you want to think about -- what your goal is.  If you think there is going to be time spent sitting and talking, that can mean something different than staying seated but having some input while reading/writing.  

For sitting -- there are a lot of options, yoga balls on chair supports are popular, so are therapy bands.  

For putting in hands -- legos can be popular.  slinkies can be popular.  those are things that would be typical for a 9 year old.

If he puts stuff in his mouth a lot -- that gets into different things and you can look for ideas for things to chew on, some are made to look typical but are things that someone could chew on (a lot go on necklaces).  

Then this is totally separate to some extent ------ it's really possible there will be breaks and you can take a toy for him during breaks.  Some places have a wide range of toys available and some more want you to take in your own.  

My son did testing around that age, and he had a lot of breaks, and he played with a 3d maze ball during his breaks.  That is what he picked out of what the tester had available.  We got him one afterward, but we didn't already have one.  

But there are extenuating circumstances because my son was already known to be someone who needs to take breaks, it wasn't a question "does this child need more breaks than other kids the same age?"  There was already a "yes" answer to that.  

My other son also did testing around that age, he was 9 or 10, and he really was able to sit and go through things without breaks.  But that is not really the kind of thing that is an issue for him.  

So it really depends between kids! 

But I think the comment you got was more along the lines of "if you have something you know works, already, feel free to bring it."  If you don't have that -- then that is part of what they might recommend -- because that is why you are going to this!  

It's not a problem for you to solve before you go, unless you already have something you are using sometimes, and didn't know if you should take it or not.  

I know for my older son, we went to Sonic and a playground after his appointments, and that was good enough for him.  It was something for him to look forward to and then it was fun for him.  He was probably stressed walking out and then feeling better before we went home.  

My other son honestly had a fun time with lots of breaks, but -- I know it was adjusted to make it that way for him.  He already had an autism diagnosis and it was already known he needed breaks, etc.  

[PeterPan]

Not to point out the obvious, but you don't want to do anything differently going into the evals. The psych NEEDS TO SEE this stuff happening. It gives them an objective way to compare his reactions and interactions to what other similarly aged dc do in those settings and interactions. If you change things now, you're screwing that up.

I'm sorry he's uncomfortable, but I think you may find he's more *tired* than anything after the long testing sessions. Most dc find them enjoyable, as they're getting to show how smart they are. 

I would plan something restful after each session and just roll it. They want to see them over multiple sessions to see whether the behaviors were a one-off (a bad day) or whether that's how they consistently roll. So while I'm sorry that it's hard to see your dc anxious or this or that, reality is you WANT those behaviors to come out. Right now the only person possibly seeing those behaviors is *you*. In order for them to get diagnosed, you have to let someone else see them. I'm sorry that's hard.

Have you ever tried a weighted blanket with him? Walmart has them affordably. You could take that weighted blanket and put it on him as soon as he gets in the car. Has this dc had an OT eval to know what his sensory preferences are and what makes him feel good? If he likes *sucking* and oral input, then you could have a milkshake or smoothie ready in a cooler when he gets in the car along with the weighted blanket. He can do that and just rest.

With what you're describing, he probably has retained reflexes. 

Edited August 7, 2021 by PeterPan

[PeterPan]

9 hours ago, eternallytired said:

we don't have fidget toys around the house because he can just get up and walk around or roll on the floor or whatever if he needs that sensory outlet (input?). 

Might be time to schedule an OT eval. See if you can find one who does sensory and who knows how to test/treat retained reflexes. You can test and work on them yourself too. 

https://www.brmtusa.com/what-are-reflexes

https://www.pyramidofpotential.com This is the system a PT did with us successfully.

https://www.kelly-mahler.com/what-is-interoception/

Edited August 7, 2021 by PeterPan

[PeterPan]

9 hours ago, eternallytired said:

I'm not sure if I should run out and get something (wiggle cushion?), or if I just hope for the best.

You mean for the psych to use? Nope. They need to see how his behavior compares to other kids who walk in those doors under similar settings. You take nothing. They need to see what happens. You can tell him basic things:

-some of the testing will be fun

-he may get tired

-he's allowed to ask for breaks

-you know it will be hard/fatiguing and that he should do his best and you're proud of him

What you're going through is all the hard stuff, the valley. You're stressed, you're grieving, and you're trying to sort all this out. Things will look up later, so just be brave and get through it. You've got this.

[PeterPan]

I would *not* add in new calming routines before the testing. Keep everything as it has been (medications, strategies, etc.). The weighted blanket just bring for in the car as you drive home from the testing. If you get it heavy enough (try 12 pounds) it will probably feel instantly zen.

[kbutton]

11 hours ago, eternallytired said:

I thought I'd ask if anyone has any advice on helping to reduce his anxiety and make the process more pleasant overall.

(I take that back: we have a TheraBand tied around the legs of his chair at the dinner table because he could NOT sit through a meal otherwise, and it was driving DH nuts.) I'm not sure if I should run out and get something (wiggle cushion?), or if I just hope for the best.

Any BTDT advice is welcome.  Thanks, all!

I think it's reasonable to do the TheraBand, but I would not do anything new. 

I agree with others that giving him something too look forward to afterwards and some downtime afterwards is the best plan. 

3 hours ago, Lecka said:

But I think the comment you got was more along the lines of "if you have something you know works, already, feel free to bring it."  If you don't have that -- then that is part of what they might recommend -- because that is why you are going to this!  

It's not a problem for you to solve before you go, unless you already have something you are using sometimes, and didn't know if you should take it or not.  

I know for my older son, we went to Sonic and a playground after his appointments, and that was good enough for him.  It was something for him to look forward to and then it was fun for him.  He was probably stressed walking out and then feeling better before we went home.  

My other son honestly had a fun time with lots of breaks, but -- I know it was adjusted to make it that way for him.  He already had an autism diagnosis and it was already known he needed breaks, etc.  

Yes, all of this.

My kids were actually hard to find appropriate fidgets for. OT helped one of my kids with some sensory awareness, but fidgets didn't really help in the meantime. He needed heavy work and being smooshed, and those aren't things that happen outside of sit and do school times. 

When my kids have been tested, they tended to get breaks. 

[eternallytired]

16 hours ago, KSera said:

If he can’t stay still in his seat, that’s important information. As far as the anxiety, we were super low-key about it and told them we were going to do some testing to find out how they learn best so that we could use that information for deciding the best ways to teach them. We told them the testing would probably be interesting and involve doing a lot of different kinds of activities. Fortunately, they did find it interesting, which I expected they would or wouldn’t have said that.

I do standardized tests every year, and I try to treat these the same: "This is to give me helpful information about how you think and learn, so I can be a better teacher for you.  There are going to be some simple questions, and some you won't know at all.  If you knew it all, it would actually not be a helpful test, so don't worry about getting things wrong."  But even though he did really well on the few tasks they had him do with me there (reading a word list, writing a few sentences), I could tell that he was really nervous.

9 hours ago, Lecka said:

But I think the comment you got was more along the lines of "if you have something you know works, already, feel free to bring it."  If you don't have that -- then that is part of what they might recommend -- because that is why you are going to this!  

It's not a problem for you to solve before you go, unless you already have something you are using sometimes, and didn't know if you should take it or not.  

I know for my older son, we went to Sonic and a playground after his appointments, and that was good enough for him.  It was something for him to look forward to and then it was fun for him.  He was probably stressed walking out and then feeling better before we went home.  

My other son honestly had a fun time with lots of breaks, but -- I know it was adjusted to make it that way for him.  He already had an autism diagnosis and it was already known he needed breaks, etc.  

Lots of good stuff to think about in your post--thanks!  I hadn't even considered what potential message I'd be sending by providing the wiggle cushion for certain activities.  I think I'll take your suggestion and figure out a treat for afterwards.

8 hours ago, PeterPan said:

Not to point out the obvious, but you don't want to do anything differently going into the evals. The psych NEEDS TO SEE this stuff happening. It gives them an objective way to compare his reactions and interactions to what other similarly aged dc do in those settings and interactions. If you change things now, you're screwing that up.

...

With what you're describing, he probably has retained reflexes. 

The problem is that he holds it together remarkably well in public, but it all comes out afterwards. I was hoping that if I could ease his stress going in or during the process, maybe he'd be less upset later.  I suppose I just need to brace myself for this to be a rough process.  At least we have an hour+ car ride home each time, so he'll have plenty of time to unwind...

He was diagnosed with retained reflexes at age 4, but when he had an OT eval at 7 they said we had successfully integrated them.  That OT was not as helpful as everyone here seems to imply that OTs are.  She said in her eval (which I had to request from my doc, since she kept saying she was going to sit down and go over it with me and never did over the course of several months) that he likely had sensory issues, given my answers to the survey questions...but she really didn't clarify anything for us.  I'm trying not to get my hopes up that this will be any more useful in the long run.

I'm going to have to schedule a Walmart trip to look for weighted blankets; I think everyone would love them.  (It's funny: since we live in Texas, it doesn't really get cold enough to pile on blankets.  After the freeze we had in February, all of my kids discovered that they LOVE having a pile of blankets on them, but they were too hot to do it beyond that one cold week.  Maybe the weighted blanket would solve that dilemma: a single layer, but all the glorious weight!)

[PeterPan]

1 hour ago, eternallytired said:

He was diagnosed with retained reflexes at age 4, but when he had an OT eval at 7 they said we had successfully integrated them.  That OT was not as helpful as everyone here seems to imply that OTs are.  She said in her eval (which I had to request from my doc, since she kept saying she was going to sit down and go over it with me and never did over the course of several months) that he likely had sensory issues, given my answers to the survey questions...but she really didn't clarify anything for us.  I'm trying not to get my hopes up that this will be any more useful in the long run.

 

So it's a catch 22. It's a voodoo field and they seem to learn exceptionally little in grad school that they actually need to work with our kids. Means it's a crap shoot whether they know anything helpful or not. 

I wouldn't assume the reflexes are integrated or that they were *all* integrated. I think I gave you the blomberg rmt site, so try the list there. I found some that are less common that were bothering ds. Also reflexes can re-emerge or go in and out of integration if that makes sense. It's a really bad thing if that's happening, but just saying it's a reason to test and be *sure* as it can happen.

At this point you'd want an OT trained in interoception or do it yourself. And I'm with you that I have ended up doing most of the work myself after $$$$$$$$ on OTs who helped little, very little. They could be helpful, but the OTs just aren't getting trained in school to BE helpful. It's a total scandal. They're being told to get phds now and they're STILL so generic that they're basically worthless to us. They need certification in autism for OT just like SLPs need specialization. It's a whole controversy.

1 hour ago, eternallytired said:

I'm going to have to schedule a Walmart trip to look for weighted blankets;

Sounds good! Maybe try different weights, like something like a 10, 12, 14. I had thought for a while I wanted a weighted blanket and then when my dd got me one (20 pounds, higher than the 12 pounds I asked for), I found it TOO much. Well then I realized why--the blankets I normally sleep under weigh 12 pounds!! Hahahaha. For reals. So 32 was too much, couldn't even wake up, lol. I only do that if I'm sick or really stressed and need some peace NOW. 

When I went on a trip this week and was in hotels, I just took the little 10 pounder my dd snagged on amazon. Remember, a lighter weight can be folded, so having different weights gives you the flexibility to combine and try things. So I'll take that little blanket (which is really only 8 or 10, I forget, very light) and fold it double for me. I'm not awake to know, but apparently I toss and turn a lot without it. 

 

[PeterPan]

1 hour ago, eternallytired said:

The problem is that he holds it together remarkably well in public, but it all comes out afterwards.

My ds had this issue of behaviors before/after and basically I needed to tell the person what was happening. Also, do some things that will let them see it, like staying to talk.

The psych should be giving you questionaires that will let this stuff show. I hate the GARS. Hopefully they're giving you the ADI-R and some of the better tools. 

[eternallytired]

2 hours ago, PeterPan said:

My ds had this issue of behaviors before/after and basically I needed to tell the person what was happening. Also, do some things that will let them see it, like staying to talk.

The psych should be giving you questionaires that will let this stuff show. I hate the GARS. Hopefully they're giving you the ADI-R and some of the better tools. 

I have no idea what they're having us do.  I feel so lost, but I also feel like my options are limited: I'd go to one of the highly-recommended private practices around here, but we don't have unlimited money.  This is the psych in the same practice as our developmental ped; I'm hoping the fact that he referred us will benefit us with the insurance--still awaiting a cost estimate.  Eek.  Hoping for the best...

Now off to read up on weighted blankets and browse Walmart and Amazon.

[PeterPan]

Well hope for the best! They're doing enough hours to uncover stuff. And I agree with you that sometimes it's better to save money to make the next thing happen, whatever that is. Think positively that these evals will give you a good start! 🙂 

[kbutton]

On 8/7/2021 at 8:26 PM, PeterPan said:

I wouldn't assume the reflexes are integrated or that they were *all* integrated. I think I gave you the blomberg rmt site, so try the list there. I found some that are less common that were bothering ds. Also reflexes can re-emerge or go in and out of integration if that makes sense. It's a really bad thing if that's happening, but just saying it's a reason to test and be *sure* as it can happen.

This can happen with growth spurts or a sudden spurt in brain maturation and require kind of a brush-up. If it's happening more than that, you really need to consider a more global explanation, and connective tissue disorders are one common global explanation. There are a variety of CTDs, but Ehler's-Danlos is one of the more common ones. 

[PeterPan]

4 hours ago, kbutton said:

This can happen with growth spurts or a sudden spurt in brain maturation and require kind of a brush-up. If it's happening more than that, you really need to consider a more global explanation, and connective tissue disorders are one common global explanation. There are a variety of CTDs, but Ehler's-Danlos is one of the more common ones. 

I guess it's a bad time to say it would be easier to sell some kids to the zoo...

[kbutton]

1 hour ago, PeterPan said:

I guess it's a bad time to say it would be easier to sell some kids to the zoo...

Well, some are “zebras.”

[Marissa]

On 8/7/2021 at 7:10 PM, eternallytired said:

I do standardized tests every year, and I try to treat these the same: "This is to give me helpful information about how you think and learn, so I can be a better teacher for you.  There are going to be some simple questions, and some you won't know at all.  If you knew it all, it would actually not be a helpful test, so don't worry about getting things wrong."  But even though he did really well on the few tasks they had him do with me there (reading a word list, writing a few sentences), I could tell that he was really nervous.

Lots of good stuff to think about in your post--thanks!  I hadn't even considered what potential message I'd be sending by providing the wiggle cushion for certain activities.  I think I'll take your suggestion and figure out a treat for afterwards.

The problem is that he holds it together remarkably well in public, but it all comes out afterwards. I was hoping that if I could ease his stress going in or during the process, maybe he'd be less upset later.  I suppose I just need to brace myself for this to be a rough process.  At least we have an hour+ car ride home each time, so he'll have plenty of time to unwind...

He was diagnosed with retained reflexes at age 4, but when he had an OT eval at 7 they said we had successfully integrated them.  That OT was not as helpful as everyone here seems to imply that OTs are.  She said in her eval (which I had to request from my doc, since she kept saying she was going to sit down and go over it with me and never did over the course of several months) that he likely had sensory issues, given my answers to the survey questions...but she really didn't clarify anything for us.  I'm trying not to get my hopes up that this will be any more useful in the long run.

I'm going to have to schedule a Walmart trip to look for weighted blankets; I think everyone would love them.  (It's funny: since we live in Texas, it doesn't really get cold enough to pile on blankets.  After the freeze we had in February, all of my kids discovered that they LOVE having a pile of blankets on them, but they were too hot to do it beyond that one cold week.  Maybe the weighted blanket would solve that dilemma: a single layer, but all the glorious weight!)

When you said he holds it together until he comes home, it really reminded me of when i first realized that i am on the spectrum aspergers, and ADHD but not diagnosed until i was an adult because i was always an honor roll AP student but always had trouble in social situations and anxiety as a result. but i was so good at hiding it via “masking” which is a typical behavior of some kids on the spectrum that they are able to mask their struggles out in the world but when i got home i would take out all my stress in my house with people who were “safe” to act out in.   I Wish i had known that i was on the spectrum because it wouldve saved me a lot of struggles in feeling like i was just flawed but really i am just different 

[KSera]

On 8/7/2021 at 5:26 PM, PeterPan said:

So it's a catch 22. It's a voodoo field and they seem to learn exceptionally little in grad school that they actually need to work with our kids. Means it's a crap shoot whether they know anything helpful or not. 

They could be helpful, but the OTs just aren't getting trained in school to BE helpful. It's a total scandal. They're being told to get phds now and they're STILL so generic that they're basically worthless to us. They need certification in autism for OT just like SLPs need specialization. It's a whole controversy.

 

Yikes, I missed this part before. Do you know what an OT degree involves? I can assure you it’s not a “voodoo field” and that they absolutely learn a ton in grad school. Like every field, there will be some who aren’t that good at it, and not everyone can be an expert in every area. OT encompasses a super wide range of things treated and just as you wouldn’t see a sports medicine PT for acute stroke rehabilitation, it’s a matter of finding the right OT for what you’re looking for. It doesn’t mean they weren’t well trained just because they’re not an expert in whatever specific area you happen to be looking for, though.