A little piece of heaven

A while ago I promised another parent that I would write a little bit about what I’ve learned regarding how to make computers accessible to young children with special needs. I don’t know too much as we haven’t spent too much time on this, but I though I’d write about what I know!

Making Computers Accessible to Kids with Severe Motor Impairments

* To allow kids to use switches with a compuer, a switch interface is needed. This plugs into the USB of the computer and allows the child to press the switch to “click” – instead of the mouse. It doesn’t allow them to move the cursor around – just to click – so it can only be used with software / sites that are cause & effect oriented where the child just presses the switch and something happens on the screen. Here is an example of a switch interface:

Don Jonston Switch Interface Pro 5.0

* If a child doesn’t have too much motor control, an arm support can be used. This will support his hand over the switch so all he has to do is press. Here’s an example:

Zoncoarm

* Kids who have more motor control can use a joystick. Here’s an example of a good joystick:

Roller 2 Joystick

This website has some other good joysticks that can be used.

Games that the child can play

* Start the child with simple cause and effect games. Some games have been especially created for children with special needs for use with switches and incorporates skills like scanning and sequencing. Here are a few examples:

One example of a good cause and effect game is Wheels on the Bus. This was created by SoftTouch. The child clicks on the mouse and something happens. A few other good cause and effect games were created by Linda Burkhart. RJ cooper also has a few. Judy Lynn also has some wonderful games for kids.

* There are some websites where a child can play and learn basic skills like the alphabet, cause and effect, etc:

bbc.co.uk/cbeebies/

www.poissonrouge.com

Starfall

PBS Kids

Fisher Price

Nick Jr

Sesame workshop

Orisinal

Noggin

* At Target, Wal-mart, Best Buy, etc. there is a section for software games. If you go to the preschool section, there are many different choices of age appropriate games for our kids to play with. If they can use a joystick – fabulous! Without use of a joystick, you will have to play with them and help them navigate through the games. This website shows a great selection:

Softwareforkids.com Preschool

Softwareforkids.com Toddlers

We’ve used Reader Rabbit with Nathan, as well as Caillou and Jump Start.

Using the computer to teach communication skills

* Intellitools is another method that can be used to start teaching a child how to communicate, if the child is non-verbal. You can use pre-existing overlays or create your own. Speaking Dynamically Pro is another similar software that is easier to use for beginners.

* Here is some information that another mom posted that I think will be helpful here:

Devices:
http://www.prentrom.com/eco
http://www.dynavoxtech.com/products/v/

Languages:
http://www.blissymbolics.org/moodle/
http://www.vantatenhove.com/showfolder.php?id=52

Dr. Janice Light webcasts:
http://aac-rerc.psu.edu/index-16147.php.html
http://aac-rerc.psu.edu/index-10925.php.html

Now if you take only 1 thing from this post, it should be this:

http://aac-rerc.psu.edu/index-16147.php.html

This presentation completely blew me away. It shows how she taught kids not just how to communicate but she helped them become fully literate using augmentative communication. She is a huge advocate of starting as early as possible with kids that have speech difficulties.

In the presentation she shows videos of a child with severe CP who becomes fully literate within 1 year of starting to use augmentative communication. I was blown away! It’s very inspiring.

This week will be my “communication” them week so I will post about the dynavox as well so you can see what an actual device looks like and how it works, as well as how we’ve customized it for Nathan.

I’ve spared you my philosophical posts for some time now but since I’ve been on retreat for 3 days, I can’t help but feel contemplative.

It wasn’t long ago that I felt broken down and like I would never find help for Nathan. And it was at that moment of being broken down that we received the help and guidance we needed. And through a series of divine interventions we found CME Medek, and specifically, Ramon Cuevas. And tonight as I watched Nathan squatting to stand over and over and lifting his trunk up by himself and starting to align his head correctly, I was just inundated with gratitude. I can’t tell you how AMAZING it feels to have found something that you know can help your child, after traveling the world and being disappointed by one thing after another. My search is over, my worry is over. I know I have done the best for his physical development. If he doesn’t change from CME Medek, then it’s just not within his capacity. But from what I’ve seen, I’ve little doubt that he will not change – I’ve already seen him change. Soon I will write a post about the changes I’ve seen.

So now that I’ve got him in the best possible hands in the whole wide world when it comes to his gross motor development, here’s what’s going on in our lives:

We are planning and getting ready for a long trip to Santiago, Chile to see Ramon. We are thinking of spending 2 months there, working with Ramon as often as he can see Nathan.

We are wondering how to pay for the above mentioned trip. If you, dear reader, know me directly, you know I’m a “fly by the seat of my pants” kinda person. I’m doing that by committing to this long trip to Chile but I feel compelled to do it. I’m trying to figure out how to do a quick fundraiser, or ways of getting the help we need.

I have started thinking/focusing on Nathan’s ability to communicate, which at present is non-existent. We have tried many low-tech methods, and none worked. So now we are in the process of trying out a Dynavox Vmax with Eyemax. I almost have the settings ready and will post a video of Nathan using it soon. I cannot tell you what an overwhelming experience this has been. When we got back from Canada I found myself with 2 boxes with almost $20k of equipment ready for Nathan to use – without having ANY IDEA how to use it. I allowed myself to fall into a whirlwind of anxiety…now I have to become an augmentative communication expert. Fortunately Nathan’s speech therapist insisted that I need to keep it simple, which was a big help. So hopefully soon Nathan will have a computerized voice. More on this soon (next week – promise!).

We are getting ready for Nathan’s IEP and educational goals etc. I am in the final stages of deciding what to do but I am still leaning towards a combo of going to the special needs preschool 3 days a week, and the waldorf preschool 2 days a week.

Also, Mary, Nathan’s nurse, and I have been trying to figure out how to transition out of treating Nathan like a baby. Mary has been on my case for a while now that I treat him like a baby and as a result he is spoiled and immature. So together we have been trying to figure out ways to treat him differently. We are talking to him like we would a typical 3 year old. We are giving him choices like we would a typical 3 year old. I am doing my best to stop hugging and kissing him all day. We are trying to teach him discipline and to help him understand that sometimes he has to do things he doesn’t like. We have been working on new activities that he can engage in that are more age-appropriate, despite his limitations. It hasn’t been easy! But we are figuring it all out.

Finally, we conquered the biggest challenge of all – Nathan’s CME Medek home program. When we started it on Monday, it was a disaster. Nathan screamed bloody murder and refused to do the exercises. I had a total breakdown as I panicked, thinking Nathan would lose everything he’d gained in Toronto and we would have this awful battle twice a day every trying to get him to do his exercises. On Thursday, after 3 days of this, while Nathan was screaming bloody murder, I couldn’t take it any more and literally walked out the door and got in my car. I went to a meditation center to try and calm myself down. And during the meditation I had an idea. What if we tried doing his CME exercises with other kids around? So that night I took him to his cousin’s house and I did a few exercises there..and guess what..it worked!!! He was so excited that he stood, balanced, pulled up, etc. So the next morning we did his morning session at the park…it went well. Then in the afternoon we kidnapped his cousin Gabriel and brought him to the house..again, Nathan did GREAT! So now we have our magic formula – he has to be in a different setting. He is sick of doing stuff in the confines of the house so we have to be creative about finding ways of getting him to enjoy the exercises. Tonight I did his session while his cousins were over and playing video games..he did very well! So now I am confident that we can maintain him until we get him over to Ramon in September.

Well that’s enough for now. Thanks for stopping by and reading my random musings!

Here is a better view of the role of the winbo in our house:

I know I know this goes against what the swing is for…but he LOVES it! It’s his favorite way to be on the wingbo!

And the best thing of it all is…. he’s also being therapized! Swinging is GREAT for vestibular stimulation!

We swing him from side to side, we make him go in circles, we push him backwards and forwards, we make him left up to work on head control, we get him to play with toys…

It’s been the BEST addition to our repertoire thus far!Oh and for all of you observant people…you might’ve seen the big DYNAVOX box in the corner… watch for a few videos and posts about it!