His Eyes Say it All - End of the Trial!

Well….We are at the end of the 5 month trial with the Tobii Eye-Gaze system to help Raymond with communication.  Today he has his last two appointments, one with his amazing speech therapist, who without her, none of this would have been possible.  The other assessment appointment is connected to the ‘decision maker’, I guess you could say.  This has been the most trying experience.  I mentioned the “ups and downs” in my last post…and it really applies to this whole experience in our attempts to help Raymond communicate.  I am going to keep this post quick….as it is also Ray’s last day of summer school and I promised to bring some goodies to the last day party.  I do want to share some video progress that Raymond has made. 

In the very beginning, we were told that we needed to show that Raymond could use this device with 75% accuracy.  Some days are good and some days are rough.  On some days Ray will start out in therapy really well, doing 50-70% accuracy for the first activity, then fatigue will hit and his accuracy will drop to 20-40%.  He has to overcome all the complexities of his conditions also, like nystagmus and poor head control.  Even for a typical person, try using your eyes to move the mouse around on the computer screen….it is not easy. 

So here are some examples of what Ray has been able to do the past month.  Just to explain, we judge accuracy by including a few choices that are desired and some that are “not” desired, which is why you will see on the screens a paper clip or a pen.  I am sorry about adding so many videos, four of them are under 1 minute, the last one is the latest and it is just over 2 minutes. 

Look at what Ray can do:

Ups and Downs…but what an amazing UP!

Last Friday, July 6^th was a crazy day, as always.  Raymond had gone to summer school that morning then off to Physical Therapy.  For the past year, he has shown a desire to crawl, so his amazing therapists took an old “walker”, removed some parts, took a towel and fixed it so that Raymond could lie face down in the towel in a crawling position.  One of us helps him to place his hands and move them, as he can not move his arms forward by himself.  Then one of us will be in the back guiding his feet and knees forward, he will then push with his legs to propel himself forward. Raymond has increased the distance he can move in the “crawler” from 25ft up to 120ft and it takes him about 20-30 mins with quick breaks to catch his breath.  Some days he does really well and will hold his head up as he is moving forward…and other days he is very tired and just “hangs” in the oddly fixed-up contraption.

So on Friday, as we were placing Raymond into the “crawler” he started pushing off with his legs.  As I asked…”Should I get his hands?”…the therapist told me to wait and see what he could do by himself.  OFF HE WENT!!!!!  We have learned to never underestimate Raymond‘s abilities, I should have know it was time for another surprise.  He was pushing with his legs, as he could not use his hands, they were back by his knees, but he was moving….ALL BY HIMSELF!!!  The therapist was just making sure his feet were not getting caught in the base of the self-made crawler.  I pulled out my phone to catch this on video….we were all in shock at what he was doing. I only got 45 seconds of video, darn it, I have not cleared off my phone and there was not enough storage. But if you watch the video, you can see how it started.  What I didn’t catch on video is that Raymond went the entire 120 ft by himself in 5 minutes!!!!! 

Here is the video:

What an “UP”!!! On Saturday came a “down” as Raymond had 4 seizures, each one getting a little bit longer.  It is not easy to anticipate Raymond’s days as he will take one step forward then two steps back.

Well, we were hoping we got the seizures under control again….then came Monday, summer school, an amazing hour of speech therapy (that will have to be a different blog), then off to PT.  I began to tell our other therapist the amazing events of Friday.  I was afraid he would be too tired to pull that stunt again Well…..AMAZEMENT AGAIN!!!!  Even though he was tired….off he went by himself for 90ft. Here is another short clip:

I love Phil. 4:13 “I can do all things through Christ who strengthens me.”  Thank you Lord, for giving Raymond a desire to “never-give-up” and for sharing your strength, Lord as you always roll, walk and crawl right next to him.

Holland

It is a relaxed Saturday morning, and as I was getting our sweet Raymond up…the process takes quite awhile to prepare his medications, do his treatments, get his G-tube feeding supplies prepared and so on.  As he was smiling at me, I started thinking of Holland.  Why Holland you ask?  Years ago when Raymond was a baby, we were given this story “Welcome to Holland” to help us understand the new world of having a child with special needs.  We kept this posted on our fridge for a long time….and when something out of the norm would happen…we would just say…well, we are in Holland now.   

But this morning, I was thinking of others who might be experiencing similar feelings because their children or a family member has had to deal with an unexpected disability due to an injury or illness, and they suddenly find themselves in what might feel like a different world.  This story might help one look at the beauties of life that one might not see if they focus on where they wanted to be, rather than where they are……

Welcome to Holland

- by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland!”   “Holland?!?”  you say.  “What do you mean Holland?  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”  But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay. 

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.  So you must go out and buy new guidebooks.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.  It’s just a different place.  It’s slower paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills.  Holland has tulips.  Holland even has Rembrandts.

            But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there.  And for the rest of your life you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned.”

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.  But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

                                                                                   

Just have to Believe!

Please forgive any spelling errors, as it is late, but I promised to let you know about Raymond’s appointment.  Thank you all for your prayers!!!!  Well, down to LA we went, Big Roman, Raymond and I to meet with the therapists for the evaluation of Raymond’s use of the eye-gaze communication device.  I said in an earlier post that on some days Raymond will do very well and will select items with his eyes when requested by his local speech therapist with 60-75% accuracy, but some days he just struggles.  At home, we have been working on giving him choices regarding his needs, wants and activities.  Over the last 3 months, he has definitely had more “good” days than “bad”.  Also, as requested, we have raised the bar on the expectations and added difficulties to test accuracy for a device that Raymond has only used for 3 months of his 13 years.  Today in LA he really struggled to match items on the screen or select items when asked by the therapist that he has only worked with 3 times now.  He was not able to show the 75% accuracy they said would be required.  So, they are not able to recommend a purchase of this device at this time, but will suggest to the insurance companies possibly getting “another” trial.  But tomorrow, we have to send the device back to the Tobii Company, they only rent it for 3 months, and our 3 months was up last week.

We will wait for the evaluation report and see what the insurance companies decide….in the mean time, we will start to look into various grants.  The therapist sent us home with at least 3 possible grants that would cover assistive technology devices for communication.  When we got home….we continued to offer Raymond choices since we have one more night to use it.  I had to take a video; I wish Raymond had shown this ability earlier today.  Please watch it if you have a chance, it is a real short video, 41 seconds.  When you watch the video, you will see 3 items on the screen; the item in the middle is a picture of a paper clip, which is supposed to be an “incorrect” selection to test his ability to access proper choices.  Also in the video you will see a “red dot” appear on the screen when Raymond is focusing his eyes on the picture to select it.  In the video, Raymond is expressing a need that you and I have everyday….. 


 

We believe in Raymond, as so many of you do also.  We will continue to work very hard towards giving Raymond the ability to communicate.  Mark 9:23 “….If you believe, all things are possible to him who believes.”

Update for "His Eyes Say it All"

I can not thank you all enough for your support and prayers for Raymond and his ability to use his eyes for communication.  I am sorry that it has taken me so long to post an update to what has happened.  Last Tuesday, we were preparing for Raymond’s evaluation with the eye-gaze system on the next day, when we got a call from the Tobii Company, the 3 month trial which was supposed to be over on the 10^th, had been extended until the 16^th.  The request for the extension came from the team in LA evaluating Raymond; they wanted to make sure we would have time to meet with the company rep to ensure we had a really good calibration for Raymond’s eyes.  So, we have had the device for one more week.  We drive down Tuesday morning, May 15^th for his evaluation now, and the device is set to be returned on Wednesday.  We are so grateful for all of your support; I know those prayers helped give us just a little more time.  The new calibration the rep was able to get on Friday is working well for Raymond. 

Last week, I put four pictures of options on the screen for Raymond and asked him what he would like to do….Go Outside or Watch TV, I also put “undesirable” items on the screen to test his accuracy (Example - a paper clip). He hit the paper clip once, after I handed it to him, he smiled and just looked at me….I said “Is this what you wanted?”  He looked back at the screen and selected the picture of outside, the computer said “I want to go outside.” So we started towards the back door, he started giggling before I got the door all the way opened.  While outside, we played with the dog for awhile, then came back inside.  Back to the computer we went, and again I asked Raymond….”What would you like to do now...go back outside or watch TV?”  Right away….he selected “I want to go outside” he hit the selection 3 times in a row.  Again came the giggles and Ray’s big brother Roman joined us outside for a game of catch.  We went outside a total of 3 times that night, all per Raymond’s requests. We only stopped because it was dinner time. 

Will you please continue to join us in prayer for God’s will for Raymond, that if it is His will for Raymond to be able communicate with this device, that God will strengthen Raymond’s abilities and help him to have a good day for his evaluation?

The picture below was taken after the boys were playing catch, the ball was still in Raymond’s scoop, he was having a blast with his brother.  I know Raymond has so much to tell us….you can see it through his eyes.

His Eyes Say it All!

I would like to give an update to the posting from last summer, “Keep on Amazing Us Raymond”. And this time I am posting with a request. Raymond, now 13, with his profound hearing loss, has only been able to hear for the past 7 years after receiving a cochlear implant. Raymond is so social, but he is non-verbal and it is difficult for him to communicate with us other than with smiles, giggles, verbal sounds but no words, upset faces or tears and so on. To communicate with Raymond it takes a lot of guessing. In that last post, I talked about an assistive technology device that used Raymond’s eyes. Well, we got the device in March on a “trial” basis. We have now had it for 3 months and have been working diligently with him at school, at home and in speech therapy. It is a computer screen that has sensors that track his eye movements and uses his eyes as the mouse to make selections. Using a computer is COMPLETELY FOREIGN to him, since we can’t even be sure how much language he understands yet.  After the first month of using this eye-gaze system, he was selecting items with 20%-30% accuracy, after the 2nd month, he was up to 40%-50% accuracy. We started giving him choices for his needs like bathroom needs, and choices for activities he wanted to do. Raymond has selected pictures with his eyes and with this device told us he wanted to read a book, play with toys, get into his walker and watch TV. Imagine a teenager telling us he wanted to watch TV…this is AWESOME! This system is amazing and he is showing progress in using it, but that progress might seem small for some, but it is HUGE for Raymond! Here’s the kicker, the insurance companies referred us to a therapy team in LA to evaluate Raymond. The team down there is amazing and has been recording Raymond's progress, but before the insurance companies will consider approving a purchase of this “Communication Device” they want to see Raymond’s accuracy up to 70%-75% by next week! Raymond is soo close, on a good day he can score around 60%-70%, but he sometimes has bad days where he struggles to get his eyes to do what he wants them to do and the percentages are less. I have attached a short video of Raymond using the eye-gaze system with his speech therapist on a simple ‘cause and effect’ exercise. I have many more videos….been taking them like crazy…I will have to post those later.

I don’t usually ask for things, but will you please pray for Raymond? With God, all things are possible. Will you please join us in prayer for God’s will for Raymond, that if it is His will for Raymond to be able communicate with this device, that God will strengthen Raymond’s abilities and help him to have a good day the day he goes for his evaluation?

Isaiah 64:8 “You are our Father; we are the clay, and You our potter, and all we are the work of Your hand.”

Thank you…..Susan

Boys Being Boys – January 8, 2012

I giggle right along with Raymond every time I watch this video. But just about one hour before I filmed this, Raymond scared us really badly. He had a very bad choking spell and was gasping for breath. Lil’ Roman saw him first and got our attention. We all gathered to help him and calm him, Raymond was really scared and so were we. But after some relaxing on the couch, back came our Raymond….laughing so cutely as his brother Roman tumbled on the couch. We just wanted to share this playful moment with our two sons. Lil’ Roman is such a great brother to Raymond.