Docent for a Day

F really, really wanted to volunteer as a docent at our local zoo.  The unfortunate thing is they require so much that he cannot do and are unwilling to really work with him.  So his educational team, who I cannot sing enough praises about, came up with an alternate solution.  His supervising teacher had her special ed class scheduled for a field trip to the zoo.  F could volunteer to be their docent for the day.  So he and his two paraeducators got to work planning the animals he wanted to provide facts for.

Then his AT/AAC team came and prepared the Dynavox for the trip. They added the facts he wanted for each of his chosen animals.  They had great comments for him to use.  It was really created to use the least amount of energy and pack the most informative docent punch possible.  Then it was up to F to learn the pages, practice, and prepare himself. He had about two weeks to do this after the pages were created. 

The day finally came for the trip to the zoo.  F did amazing.  He communicated appropriately with his switches the entire session.  Was a great role model and was well liked by his teacher's students. He appropriately said he was finished when the visit was complete.  He managed all of his respiratory needs well and had few seizures.  This was a huge success for him and quite an ego boost.  He was so proud and so was his team.  We all believe in F and know that he has the drive and will to succeed with his limitations and it takes the right motivation.

I never thought I'd ever see this day that F would have the tools he needed to be a role model for others.  It was always a dream but in his early years he lacked the support of his school district and teaching staff.  Today he's in charge of his education and it's all about being as independent as possible.  

I love you...music to our ears

F's AT/AAC team was here a week ago. They updated his maestro for him. He had wanted some comments for family added to it. One being "I love you".

He's been using the maestro and learning the new format. We've got it set up so that he has a personal speaker for his prompts and then the loud speaker for us. This cuts down in the confusion about what he's saying.

While sitting in the family room with us. He was chatting away and more or less exploring the new comments and then finally it came R hears's "I love you". He checked f's screen to see what it was he said, but this comment didn't show on the screen (an adjustment is necessary). Upon being asked what he said within a few
minutes he repeated "I love you". We were overjoyed. It has taken f almost 19 years to have the ability to say I love you to us. His smile said it all. Our hearts were so full at that moment.

I was telling his speech therapist about it and he beamed from ear to ear with pride. This is a milestone we have all waited a very long time for.

F Investigates the Maestro

His view.  I notice from
this photo the glare.
Glare really hurts his eyes.
Adjustment immediately made.

F up in his chair
ready tostart learning the new
 format of the Maestro. 

Just to give you an idea of what it looks like for F when he is in his wheelchair using his Meastro.  He has been using a laptop with VS communicator.  He was stuck in his room with it.  He couldn't go out into the real world and use it. Finally, all the years of waiting he has a device. I set it up for him in his room.  I told him he should try to turn the TV's off.  I had programed the remotes into the Maestro back in November when we had the trial device (we just saved the file and transferred it to the new one).  He didn't do it yesterday, he just investigated each button.  He also has to practice timing.  He uses a right switch to scan the boxes or columns and then the left for select.  He has an audio prompt in a specific voice with a shortened "label" in a different volume.  That way he knows that's his prompt.  When he selects the voice is in a different tone, it's louder, and the message prints at the top in the area under the toolbar.  So far in a nutshell that his progress. 

This isn't his main screen.  It's a page he went to.
It's just to give you an idea of how it's set up for him.

Part of his technology set up.
I had hoped he'd be able to
turn one of these off
with his device yesterday.
I will need to confirm
remote settings.

It's here! The Maestro is here!

F is super excited. The Dynavox Maestro has arrived. I've got it plugged in for him. I turned it on and tarted the set up process The initial set up screens have a bit of reading to get through. Unfortunately, my daughter has a swim meet this weekend which will take up a lot of my time.

F's AT/AAC team are scheduled to be here Monday to help get him set up.

I can't wait for him to be able to go out into the community for the first time with his own communication.

Your outward appearance does not determine your IQ!

Just because someone is disabled does not mean that they have a low IQ.  An Individual with disability may use a walker or wheelchair for mobility. They may talk funny or even possibly drool. They may look funny and make funny noises. That does not mean they have a low IQ.

I had a discussion with a young woman and her aide recently. She mentioned how people she meets treat her. They get really close and talk to her like they would a very small child.  She is in her twenties.  She has cerebral palsy and uses a walker for mobility.  She lives independently, but needs some assistance.  She attends college.  There is nothing wrong with her mind.

My son is treated the same way.  Why is it that the individuals who interact with him speak really slow and really loud? Sometimes they do not address him at all they only address the speaking individual with him. There is nothing wrong with his hearing. There is nothing wrong with his understanding of the English language.  What is wrong is that he cannot speak due to cerebral palsy.  He can communicate.  He can understand.

Many individuals throughout my son's life only chose to focus on what he couldn't do.  They never really looked or considered what he could do. They never thought what about what he accomplish with switch access. He's very visually impaired, but he can recognizes what is familiar to him.  If he could recognize colors could he recognize symbols.  They didn't recognize that he was quite teachable.

I think it is an inherent desire by all individuals to be treated with dignity and respect as thinking, feeling individuals.  It is in our nature to desire knowledge and stimulation from our environment.  The severely disabled are not objects in rooms, they are people.  People who are watching and observing and thinking.  People who have physical challenges  may have speech that is impaired or difficult to understand, but they are the same thinking, feeling individuals as the rest of the community.  Just as we would like to be treated with dignity and respect and to seek out and build friendships so do they.

Here is something to think about the disabled community is the ONLY minority group that any individual can join at any time.  It does not discriminate against your color or your status in life.  One head injury, one tragic accident, one tragedy can reduce your body to less than fully functioning.

F's Maestro has been ordered! We can't wait!

If you've read about F, you know that he is unable to speak.  He can communicate with yes and no head turns and eye gaze.  He's been using a laptop loaded with Tobii VS Communicator 4 Software with proximity switches on his wheelchair's head rest.  It's an okay system, but I think he's bored with it. He's unable to use that system in real world situations which frustrates him.

Today  I received authorization to move forward with the purchase of a  Dynavox Maestro dedicated communication system for him.  He did trial with a device in November.  It worked pretty seamlessly with his switches.  We also managed to give him the ability to turn the TV off and on with the IR commands.  That was HUGE!!! Not only does this device have communication, but it will assist him with environmental controls.  We are so excited for this device to arrive.  

Forrest has waited a VERY long time to have the support of some type of dedicated communication device.  He was denied the opportunity throughout the early years of his education even though he could use switches with his head.  In fact I tried and tried to get the educators on board with a communication system that would lead to independence, but... they talk a good talk.  That is also a topic for another blog. Right now we are all celebrating a future in independent communication for Forrest.

Here is a link to Dynavox and the device F has chosen. Dynavox Maestro

I will try to get pictures up and give examples of the device, but right now I just had to post how excited we all are!!!