OT assessment and goals

[BlsdMama]

They asked for goals for the insurance company today.

 

What? 

 

I have ZERO idea.

 

The assessment today.  He scored 50% in one area.  5-9% in all others.  Forgive me, I'm reeling a bit.  I honestly was a little blindsided by this.  A lot of talk of vestibular this and spd that. 

 

I am clueless.  This was different than the neuropsych eval.  It was less painful (because we were better braced) but a little shocking as this is a kid that CAN play soccer with sibs, ride a bike fantastically well, run, and play, etc.

 

And it kind of went like this: "We can strengthen him and help with motor skills.  We don't know whether what we do will or won't help with the sensory seeking until we do it and see how he responds."  Ugh.  That being, of course, the reason I really wanted the assessment and therapy.

 

Thoughts?

[Lecka]

There is a thread where we were talking about this recently.... basically, sometimes these "manifests as sensory seeking" things can be more "cured" by OT. 

 

Sometimes they can be more "managed."

 

If they are telling you they don't know which it will be - -they are being honest. 

 

If it turns out to be "managed," don't worry -- there are a lot of things that DO help, they are just things that continue as part of a lifestyle, instead of "one and done."  It is not like "there is no help."  It is just a different kind of help. 

[PeterPan]

How old is this dc?  Honestly, from where I am right now, my advice would be to think MUCH BIGGER than you think you need to.  My ds is like yours, very kinesthetic, in motion.  Compared to himself, just as he is, you think oh he's fine, quirky but fine.  Well you get him in with his peers, his also kinesthetic peers, and the discrepancies become very obvious.  And lest someone say oh, it's just the ASD/ADHD/SPD/keep going with the list of labels and I should just accept that some kids are "that way" well there's a boy in his class who HAS all those labels who, unlike my boy, has been getting OT for a number of years.  That boy doesn't have odd gait and doesn't hold his arms to his sides or not reach out to catch a ball or other things.  That boy is supple and for motor planning seems largely like any other boy on the street.  And he has the SAME LABELS.

 

So guess what this Mama is really upset about right now?  We've got to go back and do some OT/PT work for motor planning, because it's pretty obvious that 5 years of OT gets you a lot further than 6 weeks and that there's a LOT more we could have been doing that I had NO CLUE about because I didn't have the endless bank account to get in the loop for that, kwim?  

 

I don't know what insurance goals are.  It almost sounds like IEP goals.  I can tell you that the OT at the school had a much further vision for what my ds could be capable of with therapy than *I* was capable of seeing, kwim?  And now my vision goes even further, because their vision was merely about access to education, not catching up on his disability so doors would open to him.

 

So does your ds have ANY barriers in those categories that are so low that are going to keep him from doing activities he's likely to want to do?  What kinds of goals does the OT suggest?  I'm just thinking, not knowing the insurance process, that if you have big vision, long-term goals, then that sort of puts the insurance in the corner of needing to PAY for those goals and cover them.  Whereas if you just go in with 6 week, short term goals, then that's all the coverage they're compelled to give you and it's thanks, so long, bye.  And from where I am, I'm wishing I had a money tree to shake to give my kid these things, sigh.  But you can't handle it all.

 

Oh well, that's just where I'm at.  Maybe start by asking them what areas these things that are low are impacting and what the long-term affects are of not treating them...

[Storygirl]

Is it the insurance asking for the goals, or the OT? I would expect the OT to outline a set of goals, not have the parent come up with them.

 

DS11 is a competitive gymnast, but still has SPD, dyspraxia, vestibular and proprioceptive issues, a modulation problem and so on and so forth. I was surprised by the extent of issues that the OT found in the evaluation.

 

I can't answer your question about setting goals, because I haven't had to do that. In fact, our OT did not specify goals but just worked on things with him (I would have preferred some goals, though, so I could see if there was progress). But I thought I'd post to say that it is possible for a child to be athletic and still have multiple issues that OT can address. Kind of hard to wrap your mind around, that a kid can do multiple back handsprings but still need OT for developmental coordination disorder. But true.

[Lecka]

When my older son was in private OT paid for by our insurance, he had insurance goals, but I was not involved with them.  The OT took care of that.  I trusted her to do that part, it was not something where I needed to be involved, anymore than I would need to be at the dentist.  I trust the dentist to be holistic and tell me about the choices that are on my side (as the parent/consumer) and then some other things are not my concern.

 

So I know that my son had that (I think, anyway, it sounds very familiar) but it was a "mentioned to me in passing" thing for me.

 

OhE -- I say this as somebody who is fairly in-the-loop with OT in my town and as somebody who knows quite a few kids (and am around quite a few kids) who have been in OT long-term.  

 

Sure, some kids get the results like you are talking about with the peer child.  Other kids don't.  Kids are different from each other, they don't all have the same progress.  

 

So I really hesitate to say -- if your son had had the same amount of OT as the peer child, he would have the same outcome now.  I mean -- sure, it would be nice.  But it is not realistic.  

 

That is not saying "I don't think it is worthwhile."  B/c I do think it is worthwhile.  But you have to compare your own child to your own child, you can't compare across children.  It would be nice if it worked like that, but it really doesn't work like that.   

 

You have to keep in mind, for one thing, that with the diagnoses you list and say "it is the same diagnosis," none of those diagnoses require jerky arm movements.  That boy may never have had any kind of motor planning problems and may never have had any jerky, non-fluid movements.  My son with an ASD diagnosis does not!  And we think he does not have ADHD in addition to ASD.  And locally SPD is not given as a separate diagnosis when ASD is diagnosed, in general.  So these diagnoses are actually giving a VERY LOW amount of information about what a child's OT scores are going to be like and what their skills are going to be like.  They are all over the place between different kids.

 

OP -- I think you are (hopefully) going to have a follow-up with the OT and be able to ask these questions.  When my older son was in OT, I had a large amount of questions, and I was able to schedule a parent meeting with the OT for 30 minutes or so.  In that 30 minutes, I had all my questions answered, and felt a lot better about everything that was going on and with understanding where things stood and the direction we were going in.

 

We scheduled this for after he had a couple of sessions and the OT had a chance to get to know him a little.  

 

With my younger son, he is mostly sensory-seeking and under-reactive.  Have you had a chance to read about sensory sensitivity yet?  There are different areas (vestibular is one area, it has to do with knowing what your body is doing in space iirc).  There are different options.  It should, hopefully, get clearer as you find out more about it.  Have you filled out or seen a sensory survey or rating scale for him?  For these you answer questions on a checklist and it helps identify his sensory needs.  But there is a learning curve, but it is also not that complicated, once you are used to it.  And the OT will help you figure it out!  

 

I hope, anyway.  

[Lecka]

I am going to add, about the scary low percentages.  

 

Here is the thing:  it is lower than other kids his age, but you will just have to ask and find out, what that means in a real-life way.  

 

My older son exited OT and still has some lower skills.  But are they so low that they ruin his life?  No, they are not.  They are just numbers on a paper at a certain level.  

 

Now -- many, many kids have a lot greater improvement.  But even with a worst-case of some numbers not rising a huge amount..... even then, OTs create work-arounds so that kids can learn skills despite a low score in a certain area.

 

And then -- kids have a way of being flexible and playing to their strengths, too, a lot of the time.

 

It sounds like your son has a lot of real-world skills that are going well for him -- those are strengths, that are not going anywhere regardless of numbers on a paper.  Good for him!  These are his strengths!  

 

But back to my son.... he really can't play basketball with other kids his age, he is too slow to keep up.  But he can shoot baskets!  It is not ideal, but he makes it work for him, he has a friend that he shoots baskets with.  It took a lot for him to get to a point of being able to shoot baskets.  But now if he would rather shoot baskets than play basketball, it is close enough.  

 

He is not a fast swimmer, but he can go in the deep end and he can go off the low diving board and swim to the side of the pool totally fine.  This is also a major accomplishment for him.  

 

So it works out for him.  

 

This is, practically, what some low scores can look like sometimes.  This is a kind-of good example, but still, the numbers can be low but in real-life it can be something that is not that noticeable overall.  

 

And most likely -- those numbers will go up!  At least a little.  And some of them might go up a lot.  

 

My older son had a couple of scores that went up dramatically, and it really helped.  It covered up the areas where he did not make as much progress, or more that the OT could work with him using his strengths.  

 

He is really a child where you would not guess that he has some low scores, and when they were even lower (he had "below the 10th percentile" but they did not tell me numbers specifically), you would not have known, either.  

 

But it is really hard to hear the low numbers!  But they will quit being so big a deal once a little time passes.  They are helping him to get OT services, so that is a bright side.  

[FairProspects]

How old is this dc?  Honestly, from where I am right now, my advice would be to think MUCH BIGGER than you think you need to.  My ds is like yours, very kinesthetic, in motion.  Compared to himself, just as he is, you think oh he's fine, quirky but fine.  Well you get him in with his peers, his also kinesthetic peers, and the discrepancies become very obvious.  And lest someone say oh, it's just the ASD/ADHD/SPD/keep going with the list of labels and I should just accept that some kids are "that way" well there's a boy in his class who HAS all those labels who, unlike my boy, has been getting OT for a number of years.  That boy doesn't have odd gait and doesn't hold his arms to his sides or not reach out to catch a ball or other things.  That boy is supple and for motor planning seems largely like any other boy on the street.  And he has the SAME LABELS.

 

So guess what this Mama is really upset about right now?  We've got to go back and do some OT/PT work for motor planning, because it's pretty obvious that 5 years of OT gets you a lot further than 6 weeks and that there's a LOT more we could have been doing that I had NO CLUE about because I didn't have the endless bank account to get in the loop for that, kwim?  

 

 

Yes, this. We still have the SPD label, but the 3 years of OT were *invaluable* in managing the issues. Ds will always be sensitive and have sensory-seeking triggers, but the motor planning is not noticeable at all anymore compared to peers. And as a parent, I think that is huge for self-confidence and other reasons, especially as we enter the tween years.

[Crimson Wife]

The OT should ask for your input on skills you'd like to target but he/she should be the one writing them for insurance.

 

With the discussion of vestibular stuff, you probably want to consult an ENT to make sure there's nothing going on medically that might wind up causing hearing loss. At the workshop I went to at the oral school for the deaf last week, I met some parents whose kids had progressive hearing loss due to something vestibular-related.

[kbutton]

We had to work on OT goals as well. I think this is somewhat a new thing in the field or a new insurance requirement--I suspect insurance companies use it to keep you from becoming a cash cow for the OT. I found it to be a pain because I wasn't sure what to expect. With vision therapy, it was all laid out, and that was our only therapy experience at that point. In fact, the vision therapy fixed a whole host of things that were wrong that I didn't know would be side issues related to VT, along with stuff we expected to see. It was wild. So, thinking broadly is helpful, it's just that you have to find out what that means.

 

I would find out what kids his age should be capable of doing (and ask what the low/high range is), see what he can or can't do to get some ideas. In addition, I would look at behavioral issues of any kind, prioritize them, and then see if any of them could be traced back to sensory issues. Your OT can probably give you some feedback on these things, but yes, they want to know what's important and measurable to you. It's the only part of OT I didn't really like. 

 

We had some obvious things going on, such as walking into walls when he was tired (on purpose for stimulation). Acting up to create a meltdown so that he could have a release of emotion--this involved some sensory seeking. We had MAJOR sensory defensiveness--if he was touched unexpectedly from behind, he'd freak out like someone was trying to kill him, and he had no control over this. He tried to walk through doorways at the same time as other people--lack of body awareness. He used us like a leaning post. He had no self-regulation or internal organization--he could swing from under-stimulated to over-stimulated almost like flipping a switch, and "just right" was nearly non-existent.

 

My other child didn't have a lot of sensory, but he's clumsy in spite of being seemingly coordinated when he was little. He was not strong at all. He had no core strength at all (would W sit and other stuff like that). He has trouble sequencing motor movements. His hand strength is terrible, which affects writing, cutting, etc. He's slow, sluggish, lethargic. He also tried to walk through doors at the same time as others. He would walk into walls. 

 

There's also stuff like texture issues, not just with objects, but with food. I am fairly certain that I would have benefited from feeding therapy as a kid, and I have a couple of cousins whose diets went from pretty darn good to eats NOTHING once they left baby-food texture behind. This is separate from swallowing capabilities, but it's very sensory-related. Wigging out about smells and tastes would qualify too--my sense of smell as a kid was a terrible problem. It still is sometimes. The opposite is also a problem--being under-responsive to those things can be troublesome too.

 

I hope that gets the ideas flowing.