Which area to tackle first?

[Bookworm4]

In short, DD8 has dyslexia, writing struggles, and low processing speed (single digits on the tests for processing speed).  For background, she has already been through VT and the most recent follow up she was doing well.  A few struggles, but not enough to warrant more VT.  We started Barton and are plugging slowly away in that.  We had our first OT appointment last week for the handwriting struggles and I could see some improvement at the end of the session, but I'm not convinced it will carry out into daily life yet due to a variety of factors.  We only have 5 more sessions of OT anyway. 

 

Here are things I know I need to work on, but am struggling to know the best order to tackle them and thought some of you may have some great advice and experience.

• Heathermonster's IM
• RMT exercises and other exercises for retained reflexes (I am certain ATNR, STNR, and possibly a hand reflex are retained as well as possibly a few others that I haven't finished testing)
• Rapid Naming activities - like OhElizabeth's RAN/RAS sheets
• Focus Moves activies
• Possibly the writing 8 exercise from Diane Craft (debating on this one)
• Possibly some gross motor and sensory activities per OT recommendations, but we haven't been given anything yet in this area.

I realize that there may be some overlap.  If I say that I will do them all every day, I am afraid that I won't follow through well.  If they should be all done each day, I would like to start implementing them incrementally.  That said, I'm not certain which I should tackle in which order.  I feel like I should start on the retained reflexes first and then add in more, but I know some of the other things may help with integrating reflexes as well.  I brought up retained primitive infant reflexes and see acted like she'd not heard of them before and asked me how they would impact DD so I don't feel confident in asking her about it.  Do you have a recommendation?

[PeterPan]

If you KNOW she has retained primitive reflexes and your OT knows squat about them, I'd really question why you're wasting your limited # of visits on that OT.  I wouldn't.  The reflexes are probably affecting the handwriting too, since they affect vision, core, how your head turns, etc.

 

Most of the remaining stuff on your list is OT stuff.  I would focus on the retained reflexes and the RAN/RAS worksheets.  Decide on the rest later.  She's probably not ready for metronome work yet anyway.

[Bookworm4]

If you KNOW she has retained primitive reflexes and your OT knows squat about them, I'd really question why you're wasting your limited # of visits on that OT.  I wouldn't.  The reflexes are probably affecting the handwriting too, since they affect vision, core, how your head turns, etc.

 

Most of the remaining stuff on your list is OT stuff.  I would focus on the retained reflexes and the RAN/RAS worksheets.  Decide on the rest later.  She's probably not ready for metronome work yet anyway.

 

I should have clarified a little more about the OT.  The visits are limited by the OT location, not insurance (there is a limit with insurance, but not that few).  The only reason I haven't pulled out of it yet is because I watched the whole thing last week and I know it worked on things that DD needs, but I haven't figured out the best way to implement some of that at home yet nor do I know what it actually worked on in her body.  The session was 45 minutes.  The first 30 minutes were on gross motor and sensory type of activities.  Then there was a game played (which we own) that dealt with fine motor and then only around 10 minutes or so of writing (she only traced a 3 word sentence and then copied it on the line below).  That said, by the time DD got to the writing, her posture was better and she was able to keep a hand on the bottom of the paper rather than holding her head up.  There was enough difference that I figured it's working something that she needs, even if it's not all areas.  That said, I question if it will carry through outside of the sessions, but don't know how to get a good sense outside of just a "wait and see" option.  We've been battling different illnesses since that appointment that went through multiple people in the house so I haven't had her do a formal handwriting lesson with me since that appointment.  I will see tomorrow how it goes when I make her work on some handwriting.  However, even though her posture was better and the writing in general a little better, she still hyper extended a joint in her index finger and I am curious to see if the OT has anything to do related to that this week.  Maybe it will be a waste of time & money, but maybe it will help something...I don't really know yet but am hoping to get a better idea this week at our appointment (because I would rather not waste time and money there if it won't benefit enough). 

 

Thanks for the tips about which you'd focus on first.  That makes sense.

[PeterPan]

Oh, that makes sense!  And I agree totally that when you have complex situations more is more better.  And many people use multiple therapists over time.  They each have their strengths and what they have learned.  It sounds like you had a good session!  Did she give you some homework or things to do during the week?  I would definitely ask.  And what typical kid activities she could go into that would also help.  For instance, if that session was helping her posture, then core is weak, yes?  So then would she be safe to go into a beginning gymnastics class?  That would be tons of core.  

 

Is she having sensory issues as part of her school work?  I'm setting up a sensory box for my ds.  I tried, but the behaviorist has me stepping it up a notch.  There's a lot of this stuff they can teach you to do at home.  Sensory doesn't just poof in 5 sessions, lol.  There's a lot of coping and bringing in strategies.  

 

On the metronome work, it's good, but just see where she's at and what is in-reach. My dd could do the metronome work and advanced with it quickly.  My ds couldn't even do a simple clap without going into hyper-clap.  Just really different starting points!  So just see.  

 

It sounds like her core/tone issues are her biggest challenge right now.  There really is that kind of triage, where you have to pick a few things to work on.  Are you planning to swim for the summer?  Has she done or can she do swim lessons?  A known side effect of retained STNR is a good kick for swimming.  It makes it hard for them to turn their heads, but their kick will be really good!  Or the opposite can happen I think I've read.  Anyways, for my ds it was the amazing kick and not turning his head comfortably.  So we did the reflex exercises and put lots of time into swimming!  It has turned out to be a strength for him, even if he is low tone with a scad of labels, lol.  Our YMCA has year-round swim lessons.  With his issues, that slow, plodding pace allows him to be successful.  Just a thought.    :)

Edited May 3, 2016 by OhElizabeth

[Bookworm4]

Oh, that makes sense!  And I agree totally that when you have complex situations more is more better.  And many people use multiple therapists over time.  They each have their strengths and what they have learned.  It sounds like you had a good session!  Did she give you some homework or things to do during the week?  I would definitely ask.  And what typical kid activities she could go into that would also help.  For instance, if that session was helping her posture, then core is weak, yes?  So then would she be safe to go into a beginning gymnastics class?  That would be tons of core.  

 

She didn't give me homework.  I asked about it at the beginning, but she said that she would try to find the types of activities that DD needed to thrived with to know what types of activities to suggest at home.  She said it wouldn't be like VT though where our VT gave specific exercises to practice during the week.  I am going to ask her again at the end the next session since she'll have worked with DD twice at that point.  DD would be fine doing gymnastics...she did it while she was in VT a couple years ago.  We stopped due to a variety of outside factors at the time and haven't been able to start back up again yet.

 

Is she having sensory issues as part of her school work?  I'm setting up a sensory box for my ds.  I tried, but the behaviorist has me stepping it up a notch.  There's a lot of this stuff they can teach you to do at home.  Sensory doesn't just poof in 5 sessions, lol.  There's a lot of coping and bringing in strategies.  

 

I don't really know on the sensory items with the exception of light sensitivity and her loud voice most of the time.  The OT was the one who mentioned sensory.  I need to ask her more on this.  I am making a list so I don't forget during the session.

 

On the metronome work, it's good, but just see where she's at and what is in-reach. My dd could do the metronome work and advanced with it quickly.  My ds couldn't even do a simple clap without going into hyper-clap.  Just really different starting points!  So just see.  

 

I will give it a try and see.  She seems to be more on beat than she was a couple years ago (she used to hyper clap or just always be way off beat), but still struggles to keep a beat.  She is saying she wants to learn to play an instrument.  I could tell her that working on metronome work is something we need to do before she can start on an instrument. 

 

It sounds like her core/tone issues are her biggest challenge right now.  There really is that kind of triage, where you have to pick a few things to work on.  Are you planning to swim for the summer?  Has she done or can she do swim lessons?  A known side effect of retained STNR is a good kick for swimming.  It makes it hard for them to turn their heads, but their kick will be really good!  Or the opposite can happen I think I've read.  Anyways, for my ds it was the amazing kick and not turning his head comfortably.  So we did the reflex exercises and put lots of time into swimming!  It has turned out to be a strength for him, even if he is low tone with a scad of labels, lol.  Our YMCA has year-round swim lessons.  With his issues, that slow, plodding pace allows him to be successful.  Just a thought.    :)

 

I was debating this week how much swim to do this summer.  At a minimum, there will be lessons and some free swim time.  She had one session of lessons at YMCA during the school year and loved it.  DD mentioned wanting to be on swim team in our local pool (YMCA is in the neighboring city), but I am trying to figure out if swim team would be best or if it would be better to have extra regular lessons and get a swim pass to go swimming multiple days a week.  Swim team has 2-3 hours of practice 5 days a week plus a meet once a week.  I have been told this swim team doesn't turn people away, but I don't know if that will have changed since last year.  I was debating if I should bring it up to the OT and see if she saw any concerns with swim team.

 

[PeterPan]

I think the best way to decide on swim team is to visit their practice and see for yourself.  The swim team at our Y is fabulous, but it requires some things my ds isn't ready for.  He'll stretch, but once I saw it I knew it was better to keep him in classes a little while longer.  There's some reading on a whiteboard expected to see the structure/plan, and he's dyslexic.  It's NOISY, very noisy.  They yell directions from the side of the pool, and he doesn't always notice or look up.  (as in he doesn't notice)  

 

But yes in general swimming is good!  But I think you will know which way to go when you see the class.  Our Y does summer classes 4 days a week, so it can be a lovely summer.  If she enjoyed her other class, all the better!

 

Yes, that's some pretty serious EF issues you've got going on if she's got the hyper-clap.  I did hand-on-hand and just started off small.  Like we'd chant through the alphabet or count backwards from 20 or...  You don't want to overwhelm her if she's not ready to do Heathermomster's instructions.

 

That's kind of odd that the OT doesn't want you to do anything at home.  Don't get me started on the Therapy Dieties.

[Bookworm4]

I think the best way to decide on swim team is to visit their practice and see for yourself.  The swim team at our Y is fabulous, but it requires some things my ds isn't ready for.  He'll stretch, but once I saw it I knew it was better to keep him in classes a little while longer.  There's some reading on a whiteboard expected to see the structure/plan, and he's dyslexic.  It's NOISY, very noisy.  They yell directions from the side of the pool, and he doesn't always notice or look up.  (as in he doesn't notice)  

 

But yes in general swimming is good!  But I think you will know which way to go when you see the class.  Our Y does summer classes 4 days a week, so it can be a lovely summer.  If she enjoyed her other class, all the better!

 

Yes, that's some pretty serious EF issues you've got going on if she's got the hyper-clap.  I did hand-on-hand and just started off small.  Like we'd chant through the alphabet or count backwards from 20 or...  You don't want to overwhelm her if she's not ready to do Heathermomster's instructions.

 

That's kind of odd that the OT doesn't want you to do anything at home.  Don't get me started on the Therapy Dieties.

 

That makes sense.  I didn't think about having to read the white board to trying to listen to instructions being yelled in a noisy place...I don't know that either of those would have good results at the moment.  I will have to find out more.  There is a number I can call.  They don't start practice for a month.

 

The hyper-clap was more before she did VT.  She can control her claps more now (she can clap syllables, clap the alphabet, etc.), but can't clap to a beat correctly yet (but she's closer to a beat now than 2 years ago).  The metronome in VT was sort of pointless for her at the time, but it may have been partly her age (she was 6).  The VT stopped including it in home practice after a while.

 

The OT gave of us a list of activities that we could do at home, but it's a few pages of various activities listed and not something targeted specifically for her at the moment.  A local friend feels like other OT's at this location to a better job than the one assigned to us, but you don't get to pick which OT you work with really.  I'll see how things go this week at this point.

 

[kbutton]

A lot of OTs are convinced that retained reflexes integrate themselves through their activities and other activities of daily living (I've had them tell me this). Even our vision therapist has been surprised at how kids who've had all the right kind of nurturing (encouraged to have tummy time, not held in carseat carriers everywhere, time spent cross crawling, etc.) are having issues with motor problems and reflexes. Ideally, yeah, they do integrate through activities. But more and more people are realizing that sometimes they do not integrate without direct remediation. Our OTs tested reflexes by seeing if the kids could do certain things, not by doing reflex tests directly--basically if you can do xyz, you must have integrated reflexes. The idea is that certain things have to be in place before other things will work (sensory in place before other motor stuff, etc.). They also readily acknowledge that my kids have skills they "shouldn't have" that are out of sequence! Those ideas don't work together--they are totally the opposite trains of thought. The reality is that my kids could do certain things with monumental effort. They didn't realize it was monumental effort because that's how it's always been for them. After work on reflexes, the effort required is far less than monumental. But they could do the task regardless even if they did it poorly. My understanding is that retained reflexes used to be more rare or at least thought of as more rare and thought of as stuff that kids with cognitive or serious developmental impairments had, but kids who were relatively typical did not have.  

 

I would ask the OT if she will work directly on the retained reflexes. 

[Bookworm4]

A lot of OTs are convinced that retained reflexes integrate themselves through their activities and other activities of daily living (I've had them tell me this). Even our vision therapist has been surprised at how kids who've had all the right kind of nurturing (encouraged to have tummy time, not held in carseat carriers everywhere, time spent cross crawling, etc.) are having issues with motor problems and reflexes. Ideally, yeah, they do integrate through activities. But more and more people are realizing that sometimes they do not integrate without direct remediation. Our OTs tested reflexes by seeing if the kids could do certain things, not by doing reflex tests directly--basically if you can do xyz, you must have integrated reflexes. The idea is that certain things have to be in place before other things will work (sensory in place before other motor stuff, etc.). They also readily acknowledge that my kids have skills they "shouldn't have" that are out of sequence! Those ideas don't work together--they are totally the opposite trains of thought. The reality is that my kids could do certain things with monumental effort. They didn't realize it was monumental effort because that's how it's always been for them. After work on reflexes, the effort required is far less than monumental. But they could do the task regardless even if they did it poorly. My understanding is that retained reflexes used to be more rare or at least thought of as more rare and thought of as stuff that kids with cognitive or serious developmental impairments had, but kids who were relatively typical did not have.  

 

I would ask the OT if she will work directly on the retained reflexes. 

 

During our initial evaluation the OT noted that DD could do certain tasks, but that it must be taking more effort than it should.  She didn't look at all areas though at the time.

 

Yesterday the OT said that she just thought that DD needed to build some core, shoulder, arm, and hand strength and to do activities that will strengthen those areas.  She also thought we should try cursive to try to help make handwriting more automatic. 

 

Maybe I'm wrong, but I don't think cursive is going to "fix" her handwriting struggles and suddenly make handwriting more automatic.  After 3.5 years of working on handwriting and she still draws letters as much or more than writing them fluidly, I don't see how switching to cursive is going to suddenly fix that part of the struggle.  Yesterday she said nothing about the strange pencil grip during the activities either.  This OT may do well with certain types of struggles kids have, but at this point I feel like for DD that she would be better off with me working on the retained reflexes and doing other activities - whether it's a jungle gym, trampoline park, or gymnastics - than continuing to spend the time and money with this OT.

 

[Lecka]

Cursive practice did help my son's print.

 

It helped him to make continuous movements as he wrote.

 

It is not the only thing he did, but it did seem to help.

 

It does not make sense to me, either, that working on letter formation with cursive would help with letter formation in print, but I was told that.

 

If you want to look at it, a program she used with my son was Loops and Other Groups. It is one that is this way.

 

It had some good ways of working on letter formation with him.

 

If you are not feeling confidence with the OT, then it is a feeling to listen to, I think.

 

My son still has dysgraphia, but the work on letter formations did help and did help his handwriting to be (comparatively lol) more automatic.

 

With him, even tiny progress can have a huge impact on his frustration level and feeling of ability and mastery, so I do count it as worth it in that way.

 

But in another sense, his handwriting did not improve as much as I had hoped for.

 

He is back doing cursive practice again now, several years after that round of OT, and he is making some progress again. He is doing primitive reflexes some, too. They are a lot newer in our area, and I don't think it makes someone bad if they are not doing them. But if it is what you want, then it is what you want.

[texasmama]

My son's fabulous OT for 8 years told me that most OT's don't want to work on sensory/primitive reflex issues.  Most want to focus on the fine motor skills like handwriting.  My son received OT from ages 3-11, and he had retained primitive reflexes until age 10 in spite of the direct work.

[kbutton]

During our initial evaluation the OT noted that DD could do certain tasks, but that it must be taking more effort than it should.  She didn't look at all areas though at the time.

 

Yesterday the OT said that she just thought that DD needed to build some core, shoulder, arm, and hand strength and to do activities that will strengthen those areas.  She also thought we should try cursive to try to help make handwriting more automatic. We were told that, but it didn't carry over into making anything easier for the long haul--we had some short-term gains. Now that the reflexes are better, the core strength is helping.

 

Maybe I'm wrong, but I don't think cursive is going to "fix" her handwriting struggles and suddenly make handwriting more automatic.  After 3.5 years of working on handwriting and she still draws letters as much or more than writing them fluidly, I don't see how switching to cursive is going to suddenly fix that part of the struggle.  As others have said, it can help. Yesterday she said nothing about the strange pencil grip during the activities either.  This OT may do well with certain types of struggles kids have, but at this point I feel like for DD that she would be better off with me working on the retained reflexes and doing other activities - whether it's a jungle gym, trampoline park, or gymnastics - than continuing to spend the time and money with this OT.

 

 

My older son didn't have fluent writing, and learning cursive did help his print, but he was taught ball and stick printing, which is as not fluent as any kind of writing could ever be--you pick up your pencil over and over. Now he uses a fluid print technique (more like Italic print in movement). He still has dysgraphia. His brain, his language, and his hand don't quite sync up, but all of it is better and fairly functional (just not fast).

 

My younger son learned a simplified cursive from the get go. It took him forever, and then it became more fluid. Then he hit a brick wall and NOTHING was working for handwriting (this is post-OT). Then he had his reflex work. It was like flipping a switch, and the cursive that had been learned and stored was set free. It's still not as easy for him as for some kids, but I think he may lose his dysgraphia diagnosis at some point.

 

So, consider cursive, but if you think reflex work will help, I would do it if at all possible. Do you have a plan or therapy for that? There is a LOT of variation in the therapies, and I think some kids respond to some therapies better than others. I know ours was consistent with things I"ve seen on pinterest, but it was done in a certain order, and a certain level of competency was expected to move from one activity to the next, and then the previous levels were practiced with distractors and metronome. I've seen many of the activities in that sequence used as stand-alone strategies, and I really think the sequence and careful moving from one to the next made a difference for my son.

[Bookworm4]

Thank you all for sharing and for the advice.  Interesting enough, Lecka, the cursive Loops and groups is the same one the OT mentioned.  Listening to all of you share how cursive helped as well as DD has been asking me to teach her cursive a few months (I held off because I had heard about the struggles that dyslexics often have with learning cursive), I will start working on that with her.  It is nice to hear how much it helped your children over time.

 

I have a few other thoughts/questions related to the responses.  I will be back to respond more another day when I have more time and have had some sleep.   

[Lecka]

I am not sure how much this is built-in to Loops and Groups, but my son had a story to help him remember the shapes (I think). He spent a lot of time going back and making big arm movements. He made big swooping shapes on a dry-erase board. It was going back to pre-school type ideas for helping kids learn letter formation with big movements, etc.

 

And, it did help. But I can't oversell it, he had improvement, but it is not as much as I hoped for (at all).

 

He had other gains from OT then in other areas I wasn't expecting, bc he was working on crossing the midline, and that did help him.

 

That was a few years ago, and now he is in OT again and he is doing retained reflexes at school.

 

But a couple of years ago I don't think anyone in my town had gone to RMT training. It is really a pretty new thing here.

 

I liked Loops a lot for my son, though.

 

I think he is more severe than a lot of kids, so I think if he made progress ---- a lot of kids would make even more progress. But just that he made some progress is actually pretty high praise from me.

 

You haven't mentioned accommodations, and I don't know her age, but typing may be in the cards, and learning to type may (or may not) also be a little more difficult for her.

 

You can ask the OT if she has any suggestions for a typing program (as a data point) or if she has any suggestions for accommodations.

[Lecka]

I am not sure how much this is built-in to Loops and Groups, but my son had a story to help him remember the shapes (I think). He spent a lot of time going back and making big arm movements. He made big swooping shapes on a dry-erase board. It was going back to pre-school type ideas for helping kids learn letter formation with big movements, etc.

 

And, it did help. But I can't oversell it, he had improvement, but it is not as much as I hoped for (at all).

 

He had other gains from OT then in other areas I wasn't expecting, bc he was working on crossing the midline, and that did help him.

 

That was a few years ago, and now he is in OT again and he is doing retained reflexes at school.

 

But a couple of years ago I don't think anyone in my town had gone to RMT training. It is really a pretty new thing here.

 

I liked Loops a lot for my son, though.

 

I think he is more severe than a lot of kids, so I think if he made progress ---- a lot of kids would make even more progress. But just that he made some progress is actually pretty high praise from me.

 

You haven't mentioned accommodations, and I don't know her age, but typing may be in the cards, and learning to type may (or may not) also be a little more difficult for her.

 

You can ask the OT if she has any suggestions for a typing program (as a data point) or if she has any suggestions for accommodations.