Starting OT on Friday and feeling overwhelmed

[queenie]

I posted this in General Education

My dd is 8. I have just recently noticed when she was running that she was landing toe to heel and she is leaning really far forward. When she is just walking at reg speed it is not as noticeable but when fast walking or running it is very clear that her toe hits first. I don't know how I have never noticed this. She is very very tall for her age and is somewhat clumsy. She is developmentally behind in large motor skills but I just thought that she would outgrow it but now I feel like she should be evaluated but not sure where to start. Any ideas would be greatly appreciated!

 

Update: Our dr. sent us to an OT for an evaluation and we met with her today to discuss what they found. They said that my dd is behind mainly in gross motor skills but also a little in fine motor skills. With the testing they did she was at 4% compared with her peers. The main things they noted were that she doesn't seem to have an awareness of where she is in space, her balance was off, weak upper body and core. With fine motor skills she has weak hand muscles and her pencil grip was off. They recommended that we start doing therapy 1 x/week for an hour and they are also giving us at home things to work on. It is a play based facility and she absolutely loved it. They were so nice and helpful but I don't know anything about OT so I don't really have anything to compare it too. They did not mention dyspraxia but I couldn't think of the name of it to specifically ask. Thanks again everyone for the great advice!!

 

I just wanted to switch which board I was posting on:) and ask a question. The OT said that she did not detect any visual tracking problems and my dd is a great reader but her spelling is way behind!!! She tested on an early first grade level while at the end 2nd grade and the tester said that is was nothing to be worried about especially since she tested at or above on everything else but it just does not seem to be getting better. Could this somehow be related to the above issues? If so, should we take her to the eye dr.? She has been before but everything was fine but it has been 2 years.

 

[OneStepAtATime]

What else are you seeing?  When she reads out loud, does she read fluently?  Or does she have to decode a lot of cvc words?  

 

By the way, others can chime in better with this but normal eye screenings frequently don't catch unusual tracking and convergence issues....

 

Oh, and some types of reading and spelling issues can be vision related but it can also be neurologically based, so vision may not be the issue at all.

 

Have you had an eval through a neuro-psychologist?  

 

Although I don't know if it would help your specific situation, you might consider reading "The Mislabeled Child" by Brock and Fernette Eide.  I found it very helpful.

[Lecka]

I think it is worth at least looking at dyslexia-type reading/spelling, b/c it seems like these things can go together.

 

I think an OT could see a tracking problem, if it was bad, but I think there are other vision problems that would need to be screened for at a vision place.  My son has/had tracking issues and the OT (at school and at the private eval) and the VT all saw the exact same thing. 

 

I think you will be able to discuss things with the OT, and the OT will be getting to know your daughter.  Some things they can tell more after trying things and seeing how kids do, that they don't know from just an eval.  Like -- the eval shows where they are, but not how they respond to the things the OT can try. 

 

My son has had low scores in things and then raised them with therapy (OT and speech).  So that 4% is nothing written in stone!!!!!! 

[geodob]

You wrote that her balance is off, where balance is provided by our Vestibular system.

But our eyes have a direct connection to this, and use it as the primary guidance system for our eyes.

So that with her balance being off, it would most likely have some effect on her tracking, related to how much her balance is off?

 

But improving her balance, would be the best approach.

[GoVanGogh]

Starting therapy is overwhelming! And that feeling continues to come and go, at least for me.

 

Re: 4%

When my son started OT, he tested up to seven years behind in certain skills. When he started PT, they couldn't even score large sections of the eval because he was so far behind. (And our pediatrician laughed in my face when I told him my concerns?!?) The highest PT score for any of the sections was ranked as age four, while child was over 11 years old.

A year in to therapy, some of his scores have come up nearly to age level. It has been amazing.

We know this will be a lifetime struggle with him but it is so good to see the progress and know how far he has come.

With quality therapy, you will see impressive gains.

 

Re: dyspraxia

It is my understanding that the actual diagnosis needs to come from a medical specialist. Our neurologist gave that diagnosis. But a therapist cannot diagnosis, only evaluate and record her/his observations.

Not knowing where one is in space is generally dyspraxia. In the US, it is more often called developmental coordination delay.

It is likely that after they start therapy, they will request more mini evals to refine their therapies and then may suggest going to a specialist for certain things they observe. We have been sent twice back to the neurologist and once to an orthopedic specialist. Each time just gives us a clearer picture of what is going on.

 

Re: spelling and reading

My son reads post-high school level. He spells... Oh, it is too bad to admit. But it is awful.

OT did some visual testing and found that the visual sequencing memory is shot. (Due to location of brain injury) we are doing excercises to improve.

But I have found the most improvement just from working on balance and coordination issues. Seems crazy, but a child that struggles to balance themselves in their chair is expending so much energy just sitting that they can't also think about and apply spelling rules.

Building up hand and core body strength has also helped with stamina so we can actually work harder and longer on spelling.

Muscle memory also goes in to good spelling and that can be tied in to balance/coordination issues.

Lastly... Phonetic awareness... My child can sound out any word but he can't translate how he sounds out words to read in to sounding out words for spelling because he doesn't have an awareness to "how" he sounds out - where his tongue is in his mouth, how his lips move for different sounds.

 

I am also finding that I need to hit spelling from every angle and using every sensory input possible.

We are using:

Switched on schoolhouse for language arts in general (computer based program)

Sequential spelling to work on muscle memory

All about spelling for phonics

 

We also... Bounce a ball while spelling words, lay over a large exercise ball to write words on large drawing tablet on the floor (great for core strength), write large with jumbo crayon on piece of paper taped up on wall, spell with letter tiles (banana grams game plus kids spelling puzzle book is great for this), etc.

basically, have the child write with as many instruments as you can in as many positions as you can.

[Tiramisu]

One of my dd's went to OT on two different occasions with two different therapists and neither picked up the "moderate tracking issue." Both OT's did recognized the 2nd percentile VMI but didn't go further. The developmental vision problem was picked up by the regular optometrist, determined to be tracking and convergence insufficiency by the developmental optometrist, and confirmed by the computer goggles.

 

My dd is an avid reader and solid speller but fatigue affects her comprehension of longer reading passages.

[Lecka]

Oh, dear.  I had 3 people (two OTs, a vision therapist) telling me they saw his eyes jump when he crossed the mid-line.  I guess it was just an obvious thing, they all said they could see it just by looking at his eyes.  The vision therapist also had a thing he put over his eyes that showed his eye movements really specifically, but it came out the same. 

 

Well, I am glad to know that, I will not say "oh, an OT can probably spot that" anymore. 

[Tiramisu]

Oh, dear.  I had 3 people (two OTs, a vision therapist) telling me they saw his eyes jump when he crossed the mid-line.  I guess it was just an obvious thing, they all said they could see it just by looking at his eyes.  The vision therapist also had a thing he put over his eyes that showed his eye movements really specifically, but it came out the same. 

 

Well, I am glad to know that, I will not say "oh, an OT can probably spot that" anymore. 

 

Perhaps an OT that looks for it would spot it. I don't know if our OT's looked for it. Now that I'm a little more familiar with these things I pay a lot of attention to what specialists do, but there's really a learning curve, isn't there? The second time around I paid a lot of attention to the eval and I was not impressed over all. I think I paid more attention to the activities she had dd do during the eval than the OT did.

 

One thing that I noticed at our regular optometrist appointment was that when they did the puff to test eye pressure, he had to do it at least ten times. I didn't think it was going to work at all. It was either because dd or her eyes could not stay perfectly still. I don't know how that plays into things. She's older, not hyper, extremely well behaved (Thank you, Lord! Because not all of them are.) so I wonder what this almost imperceptible jerkiness is and how it affects her vision.

[queenie]

Thanks for all of the info. To answer an above question...she reads very fluently and her comprehension is great but when she is reading out loud she leaves off the last word and when i say something she has no idea what i am taking about because she thinks she said it. when i ask her to read the last word she can do it no problem and if i dont mention it she can still tell me what she read so she is reading the last word silently and doesnt realize it.

 

I also called the ot to ask a few more questions. I asked her if she thought dd showed signs of dyspraxia and she said she can't diagnose but she did not think she had it at all. She said she felt very confident that they would get her up to speed with her peers. I also asked if they tested her retained primitive reflexes and she said no that they didn't find it helpful at her age. She said that she also didn't consider dd a toe walker that her just strikes toe to heel sometimes so that wasn't a concern.

 

So should I go ahead and set up another ot evaluation to get a 2nd opinion? Should that be my next plan of action?

 

Sorry for all of the typos. I am on my iPad and I stink at typing on it:)

[Tiramisu]

Thanks for all of the info. To answer an above question...she reads very fluently and her comprehension is great but when she is reading out loud she leaves off the last word and when i say something she has no idea what i am taking about because she thinks she said it. when i ask her to read the last word she can do it no problem and if i dont mention it she can still tell me what she read so she is reading the last word silently and doesnt realize it.

 

I also called the ot to ask a few more questions. I asked her if she thought dd showed signs of dyspraxia and she said she can't diagnose but she did not think she had it at all. She said she felt very confident that they would get her up to speed with her peers. I also asked if they tested her retained primitive reflexes and she said no that they didn't find it helpful at her age. She said that she also didn't consider dd a toe walker that her just strikes toe to heel sometimes so that wasn't a concern.

 

So should I go ahead and set up another ot evaluation to get a 2nd opinion? Should that be my next plan of action?

 

Sorry for all of the typos. I am on my iPad and I stink at typing on it:)

 

I can't recommend a plan of action, but the neuropsychologist who did our testing could have diagnosed DCD, so that's something to think about.

 

One think I noticed about my oldest one is that I think she often left the last letter off of words when she was writing. It's not exactly the same thing as you mention about reading but there seems to be a similarity. Her scanning ability is also very poor, and I wonder if it's a timing thing. Imagine your dd is reading along and her eyes, her brain, and her mouth and not completely in sync (coordinated) so that her eyes have reached the end and there's a lag as to where the rest of her is in the process. Her eyes are finished with their job so she stops everything without realizing she's leaving out vocalizing the last word because it's too much to keep track of. Anyway, that's just my weird idea. I think that could happen with the type of processing delay that happens with things like dyspraxia.

[Lecka]

Definitely have the OT observe her running, not just walking.  Have your dd run until the thing you are thinking of definitely shows up -- so you know the OT has seen what you are seeing.

 

I would be okay with giving this OT a chance (2-3 months) and seeing what happens.  That is your call though, if you have a bad feeling. 

 

You might think of taking her to an additional specialist -- like a neuropsych eval?

 

But I do think you could be "wait and see" for a little while, it would be okay.  Even if there is more going on -- if this person can address some things, maybe that is okay for a little while. 

 

But if she doesn't see anything with the running, I would not be happy! 

 

The thing is -- your daughter might have been walking really carefully b/c she was aware of being watched.  When she is there more, maybe the OT will see it.  Some things with my son were not apparent with the eval, but as she worked with him, she did see them.  And, I don't think that is a fault of the OT, it is just -- it might take a little time.

 

But if you have got a bad feeling -- do listen to it.  Or a feeling of -- there is more, you could start looking into further testing. 

 

On the running thing -- I would also look for a discussion, and want to be TOTALLY satisfied with it, that it is either an acceptable gait, or that there would be more drawbacks than benefits to trying to change it.  But I would want to be very, very satisfied and feel like we were on the same page. I would not be very happy with an explanation like "she doesn't do it that much."

 

There is a saying "it is a feature not a bug" for some things -- like, yeah, they are a little different, but it is just different, it is not like "let's fix it!!!!"  But you want to be clear if you think that is the situation, not feel like -- actually it does need to be addressed.  But I do really like the "it is a feature not a bug" thing, it is so true!

[geodob]

You said that you: ' I also asked if they tested her retained primitive reflexes and she said no that they didn't find it helpful at her age.'

But retained reflexes will have a life long effect, so that identifying them at any age is helpful.

For an OT, it is useful to do a basic test of the 'reflexes', to rule them in or out as an issue.

 

But with 'toe walking', the Plantar Reflex is the relevant one to test.

It's a simple test that you could do yourself.   I'll add a link with a 30 second demonstration of it.

What you want to look at, is whether the reflex causes the toes to 'fan out and extend upwards'?

Or if they 'turn down', which is termed as grasping movement.

When the toes fan out, this indicates that it is retained.

http://www.youtube.com/watch?v=9nNb32VWA7Q

 

Though you said that she 'doesn't seem to have an awareness of where she is in space'?

Their are 2 sides to this, with a sense of where our body and limbs are in space. Which is called Proprioception.

The other side, is a sense of where their things are, in space around us. Which is Exteroception.

 

Where a difficulty with either or both of these while cause a difficulty with walking and running?

As one informs us where our foot is, and the other where the ground is.

When one has a difficulty with either or both of these?  Vision is used to cope, by simply seeing where the ground and our foot is, as we take each step.

But this way of coping becomes less and less effective, as we walk faster and then running.

So that one uses the toes as a sensor, to locate where the ground is.

 

Perhaps you could try a simple test with her?

Just have her walk across a room or any open space, with her eyes closed.

What would be interesting to observe, is whether she uses her toes to feel for the ground, before putting her foot down?

[PeterPan]

Thanks for all of the info. To answer an above question...she reads very fluently and her comprehension is great but when she is reading out loud she leaves off the last word and when i say something she has no idea what i am taking about because she thinks she said it. when i ask her to read the last word she can do it no problem and if i dont mention it she can still tell me what she read so she is reading the last word silently and doesnt realize it.

 

I also called the ot to ask a few more questions. I asked her if she thought dd showed signs of dyspraxia and she said she can't diagnose but she did not think she had it at all. She said she felt very confident that they would get her up to speed with her peers. I also asked if they tested her retained primitive reflexes and she said no that they didn't find it helpful at her age. She said that she also didn't consider dd a toe walker that her just strikes toe to heel sometimes so that wasn't a concern.

 

So should I go ahead and set up another ot evaluation to get a 2nd opinion? Should that be my next plan of action?

 

Sorry for all of the typos. I am on my iPad and I stink at typing on it:)

Queenie, did you ever sort out your game plan on this?  My dd was "clumsy" and tall for her age, and it turned out her VISION was actually what was causing her seeming clumsiness.  You could, for a moment, give the OT the benefit of the doubt that she's correct and go get her eyes checked by a developmental optometrist, which you find through COVD.  Take your time and make sure you have a good one.  In my dd's case, she didn't have true depth perception, and that, along with the convergence issues, was causing her to wham into things, not be able to catch balls. etc.  Fixed the vision and it fixed it.

 

Our OT was a little screwy too.  Dd has evidence of praxis (inability to imitate is a major clue) and she didn't get the label.  I hadn't heard the OT couldn't diagnose dyspraxia.  If not them, then who??  Neurologist?  I mean, mercy, we've already taken our kids to so many people, let's just go ahead and divvy up another set of labels that only ANOTHER practitioner get get!   :lol:   Whatever.

 

Kids with low tone often have developmental vision issues, so it's perfectly reasonable to go get it checked.  You can do a regular exam with the COVD doc and ask them to *screen* for the developmental stuff.  See what that gets you.  

 

OTs vary, but I agree it's hard for you as the mom to know how to interpret her comments.  OT evals are expensive, so that's kind of unfortunate to have to start over.  If she gives you a write-up, maybe find another OT who will take you using the first OTs write-up and just give you a 2nd opinion/check?  Just call and see.  It's perfectly reasonable to want a 2nd opinion.  You're the cash cow for the OT (with their whole "oh yes, I can treat her and make her awesome" line), and they have no accountability for progress (keep coming, it will work, honest!).  You're the one who has to sort out on the 2nd opinion thing.  If you can get it for the cost of one hour with a 2nd OT, I'd probably do it, just because it would bug me that she blew off the walking.  But whatever, I'm not an OT.  

[GoVanGogh]

Queenie, did you ever sort out your game plan on this? My dd was "clumsy" and tall for her age, and it turned out her VISION was actually what was causing her seeming clumsiness. You could, for a moment, give the OT the benefit of the doubt that she's correct and go get her eyes checked by a developmental optometrist, which you find through COVD. Take your time and make sure you have a good one. In my dd's case, she didn't have true depth perception, and that, along with the convergence issues, was causing her to wham into things, not be able to catch balls. etc. Fixed the vision and it fixed it.

 

Our OT was a little screwy too. Dd has evidence of praxis (inability to imitate is a major clue) and she didn't get the label. I hadn't heard the OT couldn't diagnose dyspraxia. If not them, then who?? Neurologist? I mean, mercy, we've already taken our kids to so many people, let's just go ahead and divvy up another set of labels that only ANOTHER practitioner get get! :lol: Whatever.

 

Kids with low tone often have developmental vision issues, so it's perfectly reasonable to go get it checked. You can do a regular exam with the COVD doc and ask them to *screen* for the developmental stuff. See what that gets you.

 

OTs vary, but I agree it's hard for you as the mom to know how to interpret her comments. OT evals are expensive, so that's kind of unfortunate to have to start over. If she gives you a write-up, maybe find another OT who will take you using the first OTs write-up and just give you a 2nd opinion/check? Just call and see. It's perfectly reasonable to want a 2nd opinion. You're the cash cow for the OT (with their whole "oh yes, I can treat her and make her awesome" line), and they have no accountability for progress (keep coming, it will work, honest!). You're the one who has to sort out on the 2nd opinion thing. If you can get it for the cost of one hour with a 2nd OT, I'd probably do it, just because it would bug me that she blew off the walking. But whatever, I'm not an OT.

Dyspraxia/praxis is a medical diagnosis and therefore has to be diagnosed by a doctor. Our neuro diagnosed but I don't know if other doctors can. Therapists can point out symptoms and advice on what dr you should see, but they cannot diagnosis.

Our therapists were very helpful in us finally getting a complete diagnosis. They did extra evaluations and highlighted the pieces that needed a dr to confirm. (ex: leg length measurement/difference). But they were the ones that spent a lot of time with DS so had a better understanding of what issues DS had and they picked up on many little things that are hard to observe during a traditional exam.

[PeterPan]

Dyspraxia/praxis is a medical diagnosis and therefore has to be diagnosed by a doctor. Our neuro diagnosed but I don't know if other doctors can. Therapists can point out symptoms and advice on what dr you should see, but they cannot diagnosis.

Our therapists were very helpful in us finally getting a complete diagnosis. They did extra evaluations and highlighted the pieces that needed a dr to confirm. (ex: leg length measurement/difference). But they were the ones that spent a lot of time with DS so had a better understanding of what issues DS had and they picked up on many little things that are hard to observe during a traditional exam.

That's interesting, because the ped had wanted me to take dd to a neurologist.  I just sort of assumed it was to confirm the low tone and do mito testing, which I wasn't interested in paying for.  So a neuropsych can diagnose dysgraphia but the neurologist praxis?  If dd has it (praxis), it's mild. It's an issue though, because she can't imitate.  She would like to take ASL, but she gets frustrated by her inability to watch and imitate the teacher.  The OT identified this but then never carried it farther or put it in the write-up or anything.  I just sort of took it to mean the praxis was mild and not significant?  Don't know.  She never said to go to the neuro, though the ped did in the discussion of tone.  I didn't like the ped and didn't go back.  The neuropsych said her motor control for handwriting was not automatic but didn't diagnose dysgraphia.  I know, the whole thing is convoluted, lol. Again, I just assumed it meant it wasn't enough to get a label but enough to show up on their radars.

[GoVanGogh]

That's interesting, because the ped had wanted me to take dd to a neurologist. I just sort of assumed it was to confirm the low tone and do mito testing, which I wasn't interested in paying for. So a neuropsych can diagnose dysgraphia but the neurologist praxis? If dd has it (praxis), it's mild. It's an issue though, because she can't imitate. She would like to take ASL, but she gets frustrated by her inability to watch and imitate the teacher. The OT identified this but then never carried it farther or put it in the write-up or anything. I just sort of took it to mean the praxis was mild and not significant? Don't know. She never said to go to the neuro, though the ped did in the discussion of tone. I didn't like the ped and didn't go back. The neuropsych said her motor control for handwriting was not automatic but didn't diagnose dysgraphia. I know, the whole thing is convoluted, lol. Again, I just assumed it meant it wasn't enough to get a label but enough to show up on their radars.

I am not sure what a neuropsych can diagnosis vs what a neuro can. I just know the therapist can't give any medical diagnosis but can advice on what they observe.

DS can't imitate well, either. And he will argue all day that he is imitating something correctly, even if facing a mirror and can see he isn't.

I thought I read somewhere that muscle tone is always a neuro issue? Even if caused by another medical issue?

We still have not found a ped that has been useful. I am currently looking for the youngest, freshest from med school I can find, in hopes they are up on latest in neuro issues.

[GoVanGogh]

You said that you: ' I also asked if they tested her retained primitive reflexes and she said no that they didn't find it helpful at her age.'

But retained reflexes will have a life long effect, so that identifying them at any age is helpful.

For an OT, it is useful to do a basic test of the 'reflexes', to rule them in or out as an issue.

 

But with 'toe walking', the Plantar Reflex is the relevant one to test.

It's a simple test that you could do yourself. I'll add a link with a 30 second demonstration of it.

What you want to look at, is whether the reflex causes the toes to 'fan out and extend upwards'?

Or if they 'turn down', which is termed as grasping movement.

When the toes fan out, this indicates that it is retained.

 

Though you said that she 'doesn't seem to have an awareness of where she is in space'?

Their are 2 sides to this, with a sense of where our body and limbs are in space. Which is called Proprioception.

The other side, is a sense of where their things are, in space around us. Which is Exteroception.

 

Where a difficulty with either or both of these while cause a difficulty with walking and running?

As one informs us where our foot is, and the other where the ground is.

When one has a difficulty with either or both of these? Vision is used to cope, by simply seeing where the ground and our foot is, as we take each step.

But this way of coping becomes less and less effective, as we walk faster and then running.

So that one uses the toes as a sensor, to locate where the ground is.

 

Perhaps you could try a simple test with her?

Just have her walk across a room or any open space, with her eyes closed.

What would be interesting to observe, is whether she uses her toes to feel for the ground, before putting her foot down?

Re: retained reflexes

 

Our experience...

DS was seen by two neurologists and both identified the muscle tone issues and neuro issues, DS had MRI to confirm brain issue.

A few months into our OT, our regular (very young) therapist was out and DS had a sub. The sub therapist was older, with years of experience. She right away picked up on retained reflexes. She told the regular therapist who then checked the following appointment. She sent us back to neuro. Neuro said no way could DS have retained reflexes and be so high functioning.

We switched therapy facilities around this time.

Within a month at the new place, the therapist questioned me about possible retained reflexes. She then evaluated and observed several. She requested a PT eval and they confirmed more.

We took these reports to two doctors that specialize in pediatric neuromuscular disorders and they both confirmed retained reflexes and used that as part of cp diagnosis.

 

A few things we learned about retained reflexes through this:

1.) in our child's case, it is more that some of the reflexes are too easily elicited. When his balance is challenged (to stand and pose for picture or to stand and read, say, a sign on a museum wall) he has indwelling of thumb on one side. When he has to hold his fingers together (like to hold hand in position to swim) he again has indwelling of thumb. Our neuro was blown away by the fact that DS has retained reflexes and can read at level he does. But sitting and reading in still position doesn't seem to elicit Palmer, stnr or Atnr. When his cerebellum is challenged, though, all bets are off on how his body reacts.

Both neurologists were blown away by the fact that a child could see a pediatrician and not have retained reflexes caught, so neither were actively looking for retained reflexes.

2.) pediatricians know squat about retained reflexes past infancy. I had one ped tell me he had never seen a Palmer reflex past a nine month old, yet he was observing DS with it. He said he honestly didn't have a clue what it meant or what to do about it. I asked why they even check in first place?' Because they are taught to, was his only answer. I then asked, so if a child has a retained reflex at nine month well child appointment, what do you do? Nothing, was his answer. They don't follow up at twelve month appointment? No, they just assume it is integrated by then.

In my honest opinion, that makes the whole process worthless.

There is so much new research on the subject and how it connects to learning issues, yet this dr was totally unaware of this.

[Jennifer-72]

I would also consult a pt if possible. I have personally seen too many people try to tackle gross motor challenges with only OT or PT. While there is lots of potential overlap, we have found having both to be far more effective.

 

If the OT does not feel motor planning is playing a role in your daughters gross motor delay what does she think is causing the delay? Has she suggested you follow up with other doctors or therapists? I find it odd that she would not give you some more thoughts as to potential causes for this and suggest the necessary follow up you need to pursue. That would be a red flag for me with regards to the therapist.