Inspiration

Although Daniel does not have Autism, he does have other hurdles to leap that are similar. When some people see Daniel, they first judge him because he is in a wheelchair, then because he is non-verbal. Many jump to the conclusion that he is mentally handicapped. In this case - they are judging him for his outward appearance. Many people won't give him to time to answer, or they don't talk "to him". They assume because he isn't looking at them, that he isn't listening.

I think they are wrong.

Watch this video. Sad but people judged this girl too and look where she is now.

Now, go over and check out her website "Carly's Voice", check around on there and see how smart this girl is.  Heck, I would have to say she has some very profound things to say that we can learn from.

Then there is Chris, who is from Michigan also.  I have had the privilege to "chat" with him a few times on FB.  What an awesome guy.  Very willing to help me get the AAC system for Daniel, and to hook me up with other people who can help.  Chris is a graduate from college, knows a couple of languages, and accesses his AAC device with his feet.  He also drives his power chair with his feet!

Here is another reason NOT to judge a book by its cover...

There are many of these stories I am sure that are out there, about people with disabilities being judged.  And it makes me so sad that there are probably thousands of people out there with disabilities that don't have the opportunity to show what is stuck inside their bodies.  I know people are probably sick of hearing me say this, but I'm going to say it again.  I can look in Daniel's eyes, and I can see he is there, he is understanding me, he KNOWS.  He is just stuck in a body that isn't working for him.  But his mind, its whole, its there and its working.

I wish one day that people who look beyond the wheelchair, or the uncontrolled body movements and see what is really on the inside.  Don't talk to him like he doesn't  understand you.  Just be accepting, that's all he wants.  He just wants to be like every other little boy.

How Can You Help..

But to fall in love with his kid?

Kid loves his arts and crafts time!  (Wonder where he gets that from!?)

His serious look, but still always bright eyed

Uncontrolled laughter equals loss of body control - Runs in the family!

Trial ECO EyePoint

Been a while - in case you didn't know, we were at a private school in Grand Rapids. It rocked! More on that later (yes I hope to get back to the blogging)

While there our PRC guy hooked us up with the Eco EyePoint so we could try it out for a couple days. Here is a short video of our first day with it. Mind you, this was the first time he had used the eye gaze in over 6 months.

What I am trying to do is document that Daniel has an understanding of what he is doing with his eyes, that he can make selections, he can follow directions, and that he needs to get approval for the eye gaze to be successful in communicating because he does not have great control over his arms and hands. It would be an imperative piece of equipment for him to have for his education.
(Can you tell we are in the process of an appeal with insurance?)

Excuse the quality of the video, part of it was done with my phone and then I tried to get another angle with the camera...you'll see I wasn't successful with that little trick!

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Are you ready for summer?

Funny thing to be thinking about when we just got buried in snow right?

I was just looking out into the yard and started thinking about how I'd like to make the yard more "Daniel" ready.  I'd love to get a covered sandbox, a heated pool, and a swingset.  Now that would be a backyard that rocked!  So that of course gets me started and checking  out these swingsets

I am determined to get him outside more this summer. We'll have to figure out ways to keep him cool, like the covered sandbox and the pool, but he just loves to swing.  He'd be out there all day if I'd let him.  So many options, its going to take some time to find the right one, then persuading dad to let us get it and getting him to set it all up!!

Ok, I can dream right?!  I better start saving now!

REMEMBERING

A recent message thread on one of the yahoo groups I belong to had me looking back at videos of Daniel and his earlier years. Ha! that sounds funny since he's only 5.  This one got me teary, but such good memories.

This was his first time in a demo power chair.

Make an on-line slideshow at www.OneTrueMedia.com

He's so small here - pretty good for a kiddo a little less than 2 1/2 yrs old.  Thanks to his awesome therapist - we got his power chair!  Now just need to get a vehicle that can transport it (that's another post~)

A Huge Inchstone

I am sure if you have been a follower of this blog for a while, you know how much I adore getting EEG's done on Daniel (insert eye roll).

You can see examples of why I dread these tests here.

We had to have two different tests done in a two week time period of Christmas break. TWO on different days! UGH

Well we went for the EEG the first week. I decided to take a different method with the trip this time.  I explained to Daniel while I was getting him dressed exactly what we were going to do.  I kept saying "remember last time, you cried because you were scared, but mom and dad still stayed with you" and "remember they stick all those wires to your hair and you looked goofy?".  I was just hoping he understood that regardless of how scared he got or upset that we'd still be there.

Usually when we hit the lobby area, Daniel will start with the whimpering and then when they call us back its the hanging on to me for dear life, then full screams when we are getting him undressed.  I JUST HATE IT.  This time was different, no whimpering, no screams.  The technician we had (we've had tons!) was one that we've worked with before and she knows Daniel well.  When we got to the room she said "OK are we going to sit on mom's lap or do you want to lay down on the table and I'll hook you up?"  He opted for sitting on my lap ;) The only rule was he had to sit still.  

So are you ready for this?  HE SAT THERE ON MY LAP and did not move!  No screams, nothing.  He told her the colors of the wires as she was sticking them to his head. 

Red. Stick on wire. Yellow. Stick on wire. Green. Stick on wire. Purple and so on....then we proceeded to watch a movie and he was DONE!  

I was  beaming!  Lonnie was standing in the hallway saying words like "spectacular, awesome, dumbfounded" It was a completely different kiddo!

On another note, Ms. Techie knew I was worried about the results, so she immediately had the doctor who reads the reports look at it before we left because she didn't want me worrying about it over Christmas.  Well during the 15 minutes I was having a heart attack because I kept thinking "OH Chit, she sees something that's why she is talking to the doctor, oh crap, bad news".  In walks the doctor, well he does show POTENTIAL for  an increased risk of having seizures but we don't show any activity.  WHOOPEE!!! 

Daniel will always have the potential, just because of the brain malformation, but we get excited when there aren't any!  YIPPEE!  An excellent day at the hospital.

Week Two:  VEP/ERG  this involved sedation, putting the wires back on Daniel's head & eye lids,  putting goggles on him that have flashing lights inside.  HATE this test too.  So I did the same thing, explained the whole thing to him.  We get there and we see Ms. Techie - she's doing this test too!  Good for us, because Daniel is familiar with her.  She comes out and says that she is going to try  it a bit different this time since Daniel was so good last week.  UGH.  This time she says  no sedation (which I hate sedating him), we are going to try the Adult test. She has the anesthesiologist and doctor on hand if we need to, but she wants to try this way.  So he again sat on my lap, they hooked all the wires up, turned out the lights and he had to follow lights on the TV monitor for 10 minutes with each eye.  HE DID IT.  Nope a peep of protest.  UNFRICKIN' BELIEVABLE!  

As you can tell I am in awe over the whole experience.  By the way, that test came back normal also!!

I'm actually not dreading the next round of tests in 6 months.  Cross your fingers and lets hope it wasn't a fluke.  A Big Milestone for us...no tears (by Daniel or Mom!)

PICTURES FROM SCHOOL

Daniel with one of his teachers Ms. Andrea

I just added the last one cause I think he's super cute and I love that smile!  He's so proud of himself.