Saturday, March 27, 2010


We have been working A LOT with Lil Man's communication lately. I say communication because, just like everything else in our lives, we use a jumble of different things to help him get his point across. He vary rarely has an issue letting you know when he is frustrated or just not happy with something. :)

We have been taking him to Rehab Institute of Chicago for Augmentative Communication Therapy (Roger Ebert also goes here - same clinic). He has only been twice, but already he is showing soooooo much improvement! The last time we were there, they told us we didn't have to come back for awhile. They have given us a modified PECS system to use with him. He has 4 or 5 laminated sheets hooked together with a ring. On each sheet, there are 8 squares, each with a different picture in them. Some are his favorite toys, one is a kleenex (I'll explain that in a minute), others are action words (watch T.V., throw a ball, etc).

The goal is to go through each square and look for SOME consistent reaction from him. Ideally, he would either sign yes or no, or point to what he wanted. With him though, we don't always get that. If he is overwhelmed, you will be lucky to get eye contact. So, we go through each square and look for a reaction. The Kleenex is purposely put in there to check and see if he is just giving a reaction to get you out of his face. So, if he really wants his toy, but reacts on Kleenex - he gets the Kleenex. It weeds out the behavioral control issues from true commuication skills. Not that behavioural control is not communication in itself. Its a little confusing. Sometimes his behavior is the only thing that he has control of in his world.

I am going to be working on getting some new sheets put together.  There are several programs out there for this, but I think it will be easier to take a picture of what we are targeting (specific toy, HIS bed, etc).  Obviously, there are some things we can't take pictures of.  I have lots of pitures of the signs for those things (i.e. hurt, want, all done, etc)  I think I will use those.  It will also reinforce his sign usage. 

They have commuication devices that do the same thing.  When you bush the button/picture, the device "says" what the picutre is.  There are several types out there from simple 1 picture ones to 20 picture or more ones.  Like these.  If you went to the link, you will see they are also very pricey.  Our insurance will help cover one device every 5 or 6 years.  So we have to anticipate what Lil Man's needs will be 5 or 6 years from now. 

The therapists have tried several of these devices with Lil Man.  What they didn't realize before we started trying them out, was that Lil Man doesn't like too many toys that aren't push button/feedback toys.  He likes lights and music especially.  He doesn't seem to care too much for action (like robots, etc). I think it is too hard for him to track.  If left to his own devices, he will self stim with most of these toys.  Anyway, he mastered all but the 20 picture device in a 30 minute session....ahem.

That means that the next step is an actual computerized device.  This will last MUCH longer, is customizable, and also MUCH more expensive.  These are the ones we are looking at.  They kind of look like a huge iPhone. 

We will still be continuing with regular speech therapy.  He does have a few words, and those he does have we would like to be clear to others when he says them.  I don't know if he will ever be able to eat by mouth.  Not so much because he physically can't/won't do it, but because of the reflux.  Have to protect those lungs!

One obstacle that we have to overcome is his brain damage.  This is an ever present demon with regards to his abilities.  On paper and on his MRI's, EEG's, etc, he should be in a persistant vegitative state.  He is literally missing AT LEAST half of his brain matter.  Beacause the O.B. that I had deleted every...ultrasound...the night he was born, we have no idea what he started with.  We don't know if his brain had formed normally and this is mostly stroke damage, or if it formed incorrectly from the get-go and more damage was done from the stroke, crashes, etc.  Either way, he has stroke damage, damage from thousands of seizures, damage from poor perfusion, damage from crashing so many times....Lots of damage through out his brain.  It is VERY obvious to anybody who meets or examines him that he has "re-wired" himself.  There are entire chunks of brain missing that "should" be controlling specific things - i.e. speech, emotion, etc. 

He seems to have a full range of emotions - he is not "flat", doesn't have rages, etc.  He has normal temper tantrums, but they are few and far between and don't last long.  Recognizing others' emotions is a developmental milestone that we haven't reached consistently.  He uses about 10 signs consistently.  He uses about 10 verbal words consistently, but if he learns a new one he will drop an old one.  Every once in awhile he will "parrot" something VERY clearly and may repeat it ten times within an hour.  Come back and ask him to say it the next day, and you will never hear it again. 

He does comprehend most of what is being said to him. If he didn't, he couldn't give you the "evil eye" and do exactly the opposite of what you are asking!  Expressing his wishes without prompting is an issue.  I have done a lot of research on speech, reading, and learning patterns of people with Down syndrome.  For many, speech "kicks in" AFTER starting to learn to read.  We don't know if those typical learning patterns will hold true for him.  "Typical" is NOT a word that applies to us very often!  :) 

This didn't start out as another long post, sorry!  We will keep you updated as we progress.  We welcome any and all ideas that you would like to pass on to us!  Thanks for stopping by! 



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Blogger To Love Endlessly said...

Wow! The OB deleted your ultrasound pics!?!?!

I think using PECS sounds like a great idea. I always like that you plan to take pictures of items specific to your environment.

Have you looked into behavior therapy for lil' man? I'm a behavior therapist (in training fr the last 6 years) and I think he would do excellent with a EI ABA therapist. There's a lot of hype over ABA & autism, but it's really a beneficial method for all diagnosis. Just a thought.

March 27, 2010 at 9:02 AM  
Blogger Heather said...

Around here,we have come to say ... "If only she didn't have that stroke."And it is so true.We see it in her eyes.We KNOW that she knows so much more then she is able to physically do and that she is able to convey to us.So frustrating for her.We too are working diligently to help her communicate.She has a bit over 60 signs.Approximate of course because of her leftside weakness.But she tries so hard.She has no verbal communication.hoping one day that will come.So,while we wait we come up with alternate devices.Mainly signing and soon onto PECS.Visually she has issues so we are even limited there.

She has shown us she understands happy,sad,mad and scared but I am not certain she understands everything we say to her.It is so had to tell.I spend a great deal of time sitting back and wondering ... what is going on in that little brain of her!

Christopher will find his way.As will Zoey and that means we will too.

thsi comment turned out way longer the I intended as well!

March 27, 2010 at 10:55 AM  
Blogger Lacey said...

How can doctors delete stuff that you know you had? I hate doctors. None of our stuff got deleted but they tried to deny throught their teeth until they saw a before and after MRI!
Like Heather said, he will find his way!

March 28, 2010 at 12:15 PM  

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