Sensory Diet

Okay!  Whew, what a weekend.  Hurt my back and can't pick up my own child...  Sad state of affairs!

So - what the heck is a sensory diet?  By the way, as your OT gets to know your child, he or she should be making suggestions about a sensory diet for your child.  If they aren't - ask.

A sensory diet, as I understand it, is different experiences that you design for your child to be exposed to.  As Christy Kennedy explained it, you spend time figuring out what experiences help your child get into a 'good place,' and you plan time into your day for those types of experiences.  What we're doing, again, is getting our children into a place where their nervous systems are able to take in sensory input and respond to it in an appropriate way - and we're doing that over and over again to make these 'paths' automatic for our kids.  The goal is to help our children be able to respond appropriately to more and more different situations.

So, what the heck does it mean for your child to "be in a good place."  For me, it is particularly difficult.  Nathan is such a good natured child (or low-sensory aware) that he is nearly always behaving in a way that is pleasing to us.  And, he can't talk to tell us when he's uncomfortable or not wanting to do something.  He does let us know both verbally and non-verbally if he feels strongly about something - so, we're getting there.   That part is nice.

The way Christy explained "being in a good place" is that your child is able to listen to and respond to your requests.  The way she does it with her kids is occassionally she'll say something like "freeze!"  or "red light!" to get them to stop their rowdy play.  Then, depending on the age and capabilities of the child, she might ask them a question or ask them to do something - now, these are very small requests.  For instance, "name three colors," "name three cities,"  "what are your favorite three cartoon characters?"  

For us, because Nathan isn't talking and because he sometimes responds to our requests and other times doesn't appear to notice that we made a request at all (is he ignoring?  it's SO hard to tell!), the idea is to watch for situations when Nathan responds to our requests (Nathan, can you pick up your magnet before we close the door?) and then think about what we were just doing together (or what he was doing with the nanny) to figure out what kinds of activities put him in a place where he seems to be able to hear us and respond to our requests.  

Now, I'm sure this isn't going to be easy.  As a matter of fact, it looks to our nanny (Lynne!  you are wonderful!) that Nathan always hears her when she asks him to do things.  It is just that he sometimes ignores her.  Is he ignoring or is he just in a place where he isn't very sensory-aware?  This is going to require some very careful observation on our part.

Our current OT keeps telling me that we need to provide Nathan with sensory rich experiences.  I asked her what she means by that - she tells me that it is exposing him to all kinds of things with different textures; playing music for him; letting him swing; hugging him; squishing him with pillows; and more.  So, I'm thinking of getting bins and filling them with dry beans, rice, and, later with sand for the tactile stuff.  We haven't done this yet - partially because I know we're all really not looking forward to all the vacuuming that it is going to mean.  We do run around with him and squeeze him when we catch him, throw him on the sofa (very soft sofa) and squish him with pillows (he laughs and laughs while we do this) and let him swing every day.  So, I think we're doing a lot of what she is asking us to do -- so why do I always feel like I'm not doing enough!?!?!

Report on The Listening Program.  I got to see Nathan with the headphones on today.  His response wasn't as remarkable as it was last week (both Lynne and the OT, Melanie reported this), but he did gradually become more aware of the room and to us while he had the headphones on.   We're doing to use the music one more week in OT and then determine which program we're going to purchase.   There are many places to purchase this The Listening Program from.  We'll probably make an online purchase and save about $400; but, purchasing online means that the support help we'll be getting will be online as well.  But, $400 is a pretty significant amount of money to pay just to get help from people we can look at while we're talking to them.  Again, this program takes 40 weeks to do - so, we'll be working for a year.  Hopefully we'll see some good results!

Happy playing with your kids!   Hope you can pick them up. :-)

The Listening Program / Special Ed

Okay - I didn't post last night because I wanted to wait until after I met with the DeKalb County evaluation folks today.  Now I feel like I might have too much to post.  If it gets too long, I'll just have to finish tomorrow!

I met with Nathan's occupational therapist yesterday afternoon about The Listening Program.  Here's how it works.  It is 10 cds that the patient (child or adult) listens to 1 time a day for 15 or 30 minutes during the 5 week days.  Weekends are 'off.'  Each cd contains...  I think 4 segments.  With the OT group we're working with, it generally takes 20 weeks to go through the cds from 1 to 10.  Then, they go back through the cds from 10 to 1.  So, overall, the program takes 40 weeks the first time through.

The cds contain 3 different 'zones' of acoustically  altered music.  The first zone is lower frequency sounds intended to target sensory integration overall.  The music is special - I can't give enough info about it - check out The Tomatis Method for info on it.   The second zone contains only music in the frequencies of conversation.  So, very low and very high frequencies have been removed.  This section of the cd's is intended to help with language.  The third zone contains only high frequencies.  This set is intended to help with energy.

I called our developmental pediatrician about this program before meeting with the OT.  He has seen both great and non-existent results with the program.  He said that he would absolutely go for it if we'd seen Nathan react the way that he did on Monday.

Okay, here is my very nominally informed theory (very dangerous ground).  There are so many ways to have sensory integration issues - audio, visual, tactile, vestibular (movement and balance), propreceptive (sense of where you are in space and where your limbs are in relation to your body), smell, taste and more.  Because there are so many different areas of sensory input and senses to have integration issues with, it seems to follow in my nominally informed thinking that the same solution wouldn't work for every sensory system.  So, the same thing might work great for one person and have no effect on another person.  The brain is a very complicated organ!  And, the brain is where all this integration of sensory input occurs.

So, if Nathan responded well (I still haven't seen it - we couldn't get the headphones on him yesterday afternoon - uuuurrrrgh!) to the auditory therapy that The Listening Program is, then maybe his biggest issue at the moment is auditory.  Who knows.  We're certainly willing to try it.

I'm painfully aware of the fact that I'm constantly searching for a silver bullet and that there may not be one.  I can't stop myself.  It's like my brain knows it isn't helpful, and my heart just can't seem to stop.

Okay - very quickly (because I totally forgot that I have sensory integration learning to share - I'll do that next time), the meeting with DeKalb County Public Schools for Nathan's evaluation was interesting.  They were extremely accommodating to us - I suppose because Nathan is so young.  The 'test' was LONG.  2 hours.  Ridiculously long for a 2-3 year old.  We had two people testing Nathan at the same time - a developmental specialist and a speech/language pathologist.  I think they wore him out.  We were sitting at the end of the table with the developmental tester on our left and the speech/language tester on our right - they were sitting around the corners of the table from us.  So, we everyone was quite close.  The developmental tester would be doing something with Nathan, and the speech/language lady would get her stuff set up - right in his line of vision and distract him.  I don't know, maybe that is part of the test, but it didn't seem like it.

Nathan behaved fabulously.  He is such a great kid.  We went an hour past his snack time, and, thank the heavenly father above, he did not melt down.  WOW.

At the end of the test, I asked them what their initial thoughts were.  And, of course, they didn't tell me a thing - really, because they can't.  But, it was still hard to hear!

What they did tell me was that Nathan's eligibility for special education wouldn't be up for negotiation - that he had to score some number (can't remember - 1 or 2?) standard deviations below the mean score in at least two areas in order for him to be eligible.  They also told me that if he's eligible, they will make a recommendation about how they think they can best serve Nathan, but parents have a BIG say in that.  So, while I can't beg for him to be eligible if he isn't, I can say exactly how I want it to go if he is.   I think I can live with that -- well, I might have a different attitude if he isn't eligible!

Deep Pressure and Joint Compression update - we have stopped doing the 'brushing' or deep pressure program with Nathan for now.  He was taking longer and longer to fall asleep at night.  I think it was just a LOT of input for him.  I can say that we've noticed him being more interactive and responding more to our questions and requests of him.  I don't know for sure if it has been that program that has caused these changes - we have a new nanny who talks to Nathan a LOT more in addition to adding in the DP and JC program (too much typing!).  I talked to the OT about stopping.  She was fine with it because we'd been doing it for 2 weeks (the minimum that the developers of the program say it should be used).  I told her I'm not against trying again, but I really think that Nathan needs a break.

Okay - I can't wait to share with you what I learned from Christy Kennedy about Sensory Integration yesterday.  But, it's too much to write now; this is too long already, and it's getting late...

Sensory Integration - wow

Yesterday, I attended the first of a four-lecture series on Sensory Integration given by an occupational therapist, Christy Kennedy, with years of experience studying the brain and working with children.  I'm looking back over my notes trying to figure out what I learned - it was so much information!

I can tell you that I walked away wanting to learn more about brain stem function.  There is a 'thing' (don't know much about what it is) called Hypothalamus that has a regulatory function over appetite.   Interestingly enough, I just worried about this out loud the other evening!  So often, I'm asking myself - "Is Nathan full?  Will he throw it all up if I feed him one more bite?"  You see, Nathan often does not indicate when he's full.  So, I have to glean that information from signals that he gives with his body.  It's hard!  I need to learn more about this hypothalamus thing!  

Just to give you an idea of what that is going to look like - I'm going to talk to my nutritionist and GI doctor.  I'll talk to my pediatrician, I'll go back and talk to Nathan's neonatologists from the NICU.  So, I'm going to get information from traditional medicine.  And, I'm going to also talk to every therapist who I think might have some education around this brain stem thing.  I'm finding that most good therapists will tell me if they don't have a clue about something and will point me towards people who may be able to help me.  THEN, I will be able to take what I find out on the wonderful wide web and maybe understand a little bit of it.

I'm finding that this learning around things that might be affecting Nathan's development isn't easy!  It takes a lot of footwork/phone work, whatever you want to call it. 

Back to the lecture, I also came away from the lecture realizing that a lot of Nathan's little social idiosyncrasies may be sensory integration issues - so, maybe we can help him be more social with some therapies.  

Briefly - we take in information about our surroundings and our bodies through way more than five senses.  Our bodies transmit that information through our nerves to our brain stem where our brain organizes the information and routes it to the area of the body that needs to respond.  Sensory integration issues are about the brain not being able to handle some portion of that pathway efficiently or well.  

She explained that no one's nervous system performs perfectly all the time.  Those days when you bump into everything or drop everything - that is an example of having issues with integrating your senses with your body.   Hey!  We have a real reason for those days when we're having "issues!"  Isn't that great!?!?!  

Christy also said that everything affects how our body transmits these signals.  Diet.  Chemicals in our body can either help or hinder how well signals travel.  Sleep.  We intuitively know that.  How much stimulation you get in any given day.

One big thing I came away with was an understanding of a couple of things that occupational therapists are trying to do.  

First, to build success in sensory responses to make the neural pathways more automatic for a child.  So, visually - the ball comes at you, raise your hands to catch it.   In any system that Nathan might be having issues, we want to help him make those neural pathways more automatic.  That helps my understanding!  

Second, they try to help a child be less (or more - depending on their issue) sensitive to certain stimulus.  By doing this, they can increase a child's capability to learn because they are either less sensitive to distractions in their environment and able to focus easier or more aware of their environment in order to be able to pay attention to something outside of themselves.  

Overall, I came away with a hopefulness that I can actually learn about this stuff and help Nathan.  Yay!

I can't say much more about the lecture; it was too much information!  I do know that a website that I posted a few days ago really made me more aware of different behaviors that might actually be sensory integration issues.  That site is:

http://www.sensory-processing-disorder.com

With Christy Kennedy's permission, I will post her contact information to find out how you might be able to attend her lecture series or gain access to the information in it.  She is in the  Atlanta, Georgia metro area.

A quick report on the Deep Pressure and Joint Compression program we're working on with Nathan, he's making more and more noise; he doesn't seem to be as bothered when his hands get messy; and, he is walking in the grass with bare feet without even thinking about it.  Cool stuff!

An honesty report - I still haven't managed to work the oral therapy program into our day.  Ugh!

Happy home therapy-ing and playing!