Hearing into Voice

We have so much stuff going on right now I don’t even know where to start! The plates spin and spin as I watch them floating with fascination and wonder.

Communication

So much is moving forward in the field of Nathan’s communication. Dr. Sharon Rogers came over to meet and assess Nathan, and I am IN LOVE! I have been searching for this woman for a VERY LONG TIME. She is kind, smart, very experienced and KNOWLEDGEABLE in the field of AAC. I am thanking my lucky stars for guiding us to her! She wrote an assessment tool called Hearing them into Voice which is absolutely fascinating. Check out her work, she is brilliant.

She came to our house and mostly ignored me completely and focused entirely on Nathan (which was WONDERFUL!). With most people, it’s the other way around – they talk to me and ignore Nathan. How refreshing for someone to address him and treat him as if he is in there, listening and communicating in his own way!

She started by showing him a magnetic board with the letters of his name and having him work on literacy and spelling his name. He was so attentive! Since we have a page on the Dynavox with the letters of his name, he showed off his spelling skills too. Then she asked him to choose a book to read by offering him 3 choices. He picked a book with eye gaze, she read the book to him, and at the end, she pulled out a 4 choice switch to work on reading comprehension. As soon as I realized what she was doing I told her I could program that into the Dynavox in 2 minutes flat. So within minutes I had those choices on the Dynavox. She then asked him questions about the story, for example, Nathan, what was the boy’s name? What did he say? And Nathan could answer her with the Dynavox. The kid in the story said “Boing Boing” which Nathan of course found hysterical so he kept selecting that box and cracking himself up. He also decided to retell the story in his own way – he would first hit the box for “school”, then “gerard” and then “boing boing.” He did this several times. He was trying to say, “At school, Gerard said boing boin.” He had so much fun while saying this too! Finally she worked on color recognition. By that point he was pretty tired and it was time for his snack so he used the device to tell me he was tired and hungry so that’s where the session ended.

I just LOVED how respectful she was of him, and how she assumed competency when approaching him. I am so accustomed to people assuming incompetency – they assume he doesn’t understand, or is not capable, so they relate to him that way. Dr. Rogers assumed competency and treated him as if he COULD answer, and he responded so well to that! I believe kids perceive things, so Dr. Rogers belief in Nathan’s competency helped to make him “rise” to the next level which is why he complied and attended to what she had to offer him.

Dr. Rogers is a big fan of Dr. Janice Light’s work and believes Nathan can become literate, and that he can learn letters and new words QUICKLY. She will be joining Team Nathan and helping us move Nathan towards improved communication and literacy. I am SO excited!

Our team is growing now, comprised of the wonderful Ronna, Dr. Rogers, and soon he will start at the Northridge speech and language AAC clinic. A team that believes in Nathan, in his potential, that he has communicative intent and that he will one day SOON be a functional communicator – a dream come true!

Behavior Intervention

Today I finished about 20 hours of parent training on ABA (advanced behavioral analysis). It is a requirement so that Nathan can receive behavioral intervention services. I had been holding off on this service as I wanted to make sure it was timely and that Nathan was ready for it. Well now is the time.

After working 1 on 1 with a behavior interventionist for 20 hours – I have learned SO MUCH about behavior modification. It is incredibly interesting stuff…fascinating really! It’s all about understanding the reasons for behaviors, and using reinforcers to modify those behaviors. The reason this is so timely is that communication is the cornerstone of behavior. And in Nathan’s case, behavior is the cornerstone of communication. The plan is to create an intervention plan around Nathan’s use of the Dynavox, in order to “ease him” into more functional communication. Right now he has absolute access (ability to use his eye gaze to make selections), but still needs help using it more functionally, for example, to answer questions and to sustain conversations. Imagine a child who chats away, doesn’t stop to listen to other people’s responses, doesn’t answer questions, and just talks and talks and talks away about whatever he wants to say. That’s how Nathan is currently using the Dynavox. We want to modify that behavior a bit so he can learn to slow down, respond to questions, and engage in social interactions. So exciting isn’t it!

Initially I thought ABA wouldn’t be relevant because Nathan has such limited use/control over his body. But once I realized that ABA can be used for skill acquisition, I was hooked, so we are moving forward with this service, which is funded by the Regional Center. Another new member for Team Nathan; another very valuable and essential acquisition to the team 😉

As you can tell much of our energy and emphasis now is going towards Nathan’s cognitive and communication development. Everyone that works with him feels he has SO MUCH POTENTIAL! And I am excited to help our social butterfly find his voice.

I have so much more to share but I think this is enough for today, so I’ll stop here.

Google Alerts

In my post about buying used equipment, I forgot to mention something that helped me keep an eye on used equipment.

http://www.google.com/alerts

I created alerts for the equipment I was looking for, and then Google would email me every day when things came up.

Here’s an example:

site:craigslist.org pony gait trainer

I typed that into Google alerts, and then it would send you an email with any results from that site using those keywords. In this case, here is the result:


http://kansascity.craigslist.org/for/2354187033.html
(great deal by the way if anybody is looking for a Pony gait trainer).

You don’t have to limit the query to craigslist, you can enter simply the keywords and Google will send you any results it finds.

Just thought I’d share this last tip for people searching for special needs equipment!

The era of “So What”

We’ve entered the era of “so what” in the Andrew household.

So what…

…if Nathan never walks – he’ll prance in his pony and roll with a baby on each side of his lap. And when his laps not big enough? Then we’ll all find a way to roll together.

…if Nathan never talks – he can sure chat up a storm with his dynavox. Sometimes when he has it on I feel like turning it off because he chats and chats and chats! (no, I am not serious, I love it!)

….if Nathan is not like a typical kid – he is typical to me, he is the boy I love with all my heart and he is my normal.

…if Nathan can’t play like other kids – he plays in his own way, he loves life so fully, and he enjoys his life more than most humans on this planet!

…if Nathan can’t take care of himself – I find taking care of him a privilege and a joy and I’m so glad I get to! Plus he is so sweet and adoring and just such a pleasure!

So what if Nathan is severely disabled?

With his severe disability comes severe cuteness, severe sweetness, severe gratitude, severe appreciation, severe joy, severe and intense and overwhelming and all encompassing love.

We’ve entered a new era in the Andrew household.

The era of So What.