Thursday, October 2, 2008

Is Jaedon Being, or Doing?

First, thanks to to everyone in Team Jaedon, the people who are pulling for him, praying for him, giving to his project and doing anything else. So far, I have collected $350 towards his present, and have heard from many others who are working on contributing. I'll keep you posted! And speaking of posting...

Sitting on the inside, standing on the outside. That is the classic example of a child who is DOING one thing and BEING something else. With autism, it's so easy to get caught in the trap of valuing externals. There are so many things that are externally 'abnormal' that I'm often tempted to just get them 'fixed'. I remember looking at Jay when he was 2 and saying to him "Just stop flapping your hands! Then, people will stop thinking something is wrong with you." I've come a long way, and have come to value cohesion and consistency: insides and outsides matching up.

Jaedon's biochemistry is different from many other kids. I remember a doctor saying to me to forget labels. He said "If my biochemistry was like his, I would behave that way too!" Now, we work hard on helping Jaedon to grow inside out. Son-Rise ( really focuses on who the person is internally and motivating internal change. The biomedical interventions focus the same way. I know with myself, if I change on the inside, I'll really change, and it will be permanent. Something I work up because of external pressures tend not to be as permanent. Otherwise, I would still be going to the gym every week! So, when you look at Jay, smile, and he smiles back, he means it!

A few days ago, we went to Columbia's medical school to participate in a study looking at kids on the spectrum, and their typical siblings. After several hours of testing, the tester told me we didn't qualify for the study because she couldn't get a high enough IQ score. Jaedon is is difficult to test using the typical instruments available because they require reasonably strong receptive language.

Looking at him with a tester may cause you to believe he doesn't understand what is being asked. I've come to realise that a lot happens after understanding and before demonstration of understanding. A typical example is me asking my husband "Honey, could you get me my purse in the kitchen?" while he's on his computer. It would be foolish to assume he doesn't understand my words when no purse is forthcoming! He could have not heard, because he's busy, he could have heard, and forgotten because he quickly went back to what he was doing, he could have heard,and was thinking about it "doesn't she see I'm busy?", he could be plain unmotivated to move. All are possibilities for the child on the spectrum and I know many of these are true for Jaedon. Without the burden of social pressures, why would he respond to the tester's questions and requests except for genuine interest?

Anyway, on the one hand, this psychologist said she couldn't get the scores she needed, but she did comment on a few things:

- Jaedon has joint attention (he looks at a person, at an object and back at the person he wants to show the object to). Babies 10 months old can do this, and Jaedon has never demonstrated this on a test.
- Jaedon has a warm social smile, reciprocating a smile when someone smiles at him (if he likes you)
- The tester felt he connected with her.
- Jaedon showed emotional strength and stability by being warm and relaxed even at the end of the testing.

These things seem so simple and are taken for granted in typical children, but the tester felt they were a credit to our focus on who he is on the inside.

Another story about Jaedon being. I was out of town last weekend, so he last saw me Thursday night, then Monday morning. I know he misses me when I'm away, everyone says he's different, but when I return, there is usually no major response to me, maybe a smile. This time, I saw him and said "Hi". He enthusiastically said "hi!", grabbed my hand, led me into the living room with him, looked at me holding my hand and shouted "hi" to me seveal times. That was really amazing for me. He was happy to see me! He accessed a socially appropriate feeling and demonstrated it in a socially appropriate way!!! Yeah Jaedon!

So, as we continue, I'm excited by the changes I see in Jaedon every day and on the days I'm not seeing what I'd like, I know Jaedon is WYSIWYG, what you see is what you get! When I see progress, I know the change is really there on the inside!


Sara said...

What an incredible post! I've been part of a Son-Rise program for the last 6 years almost, and it had definitely been the single best thing I've ever done. I am excited to watch your son grow as well!

manika said...

Such a moving piece of writing reflection! I am in tears...tears of joy, tears of memories and connections and even tears of pride ( even in the small portion I traveled with Jaedon on his journey). I learned so much from him and his family. This will stay with me always and Jaedon will always be the representative, the model, the angel of the study. Thank you Jaedon, Simmone, Zachary, Faith and Isiah for showing me the meaning of hope, dreams and determination. Love you Clarke Five!

The Clarke Five said...

Hi Sara! Thanks for checking out our blog! I hear about your great work with Kaegan. It inspired me to build a team of my own. Keep spreading the hope.

Nicolé said...

The 'being-doing' part resonates with me - that's what is defined as 'integrity': your outside/public face being a reflection of your inside/private face.

That's what we all strive/pray to be... people of integrity... and here you are, seeing that as you walk this incredibly mountainous terrain with your son. Hmmm. Something to think about.