Friday, October 2, 2009

So, why is my heart so heavy?

Leaving the warm, accepting family of folks who attend the Autcom conference every year is hard for me to do. What must it be like for those who are on the autism spectrum and have to return to the real world where so many people they meet every day just don't get it?

Since my return, I have:

(1) spent a couple hours catching up with a dear friend who is still spending time in the local schools, working as a substitute aide or teacher, mostly with young kids who have special needs. Her lament that school staff are overworked and underprepared started the heartbreak process. The teachers and assistants care, they want the kids to succeed, but the cards are stacked against them. There are too many kids with too many needs (and of course not all of them have special ed. labels - there are just a lot of needy kids these days). Many schools are proud to offer "full inclusion" - but in some cases that means there's no place to go when a child is feeling overwhelmed and in need of some down time. Worse yet, too many of those who work with the kids don't have an understanding of the many various sensory issues these kids might be dealing with.

(2) met with a young guy in a very supportive school setting, who is frustrated by the "boring" work he is being given. He wants me to be there with him every day so that he can show his teachers what he's capable of doing. He says he loves school, but how long will that last if his intelligence isn't recognized?

(3) talked on the phone with a parent who lives far, far away. Her son has had two fabulous years at school, using FC for school work, and being fully accepted for who he is. Now he's in a new school, with all new staff, and while they are trying, it's just not working at this point. He's showing his frustration by biting his hand, even lashing out toward others. He's able to use FC at home to tell his mom he's tired of having autism, tired of having to deal with all the struggles that go along with living in his body, tired of waiting for people around him to see who he really is.

And, (4) exchanged email messages with yet another mom (also far, far away) whose daughter has used FC with me in the past, but hasn't had much success using it to express her thoughts and feelings with anyone else. She too is dealing with frustration and anger because life is so difficult when you can't communicate what you are thinking. People around her question the validity of what she has typed in the past, and have no real understanding of her true abilities.

On the other hand, I was able to meet with a friend who used FC just last week to tell me just how depressed he was because things in his life haven't changed fast enough, and he too was tired of living in a body that won't do what he wants it to do. Telling him the various stories of my wonderful weekend with the Autcom folks clearly brightened his outlook, and he kept begging for more. "I JUST NEED YOUR POSITIVE ENERGY EVERY DAY. I NEED TO HEAR MORE STORIES. I NEED TO TYPE ALL THE TIME."

I too need that positive energy every day, and my heart wishes my body could be present for every one of these young people as they go through their day. I don't really need to hear any more stories. I just need to see more people opening their minds and hearts to exciting new possibilities. We are all getting tired of waiting.


  1. It was great to read about your AutCom experience in the last blog and this one.

    Yes, more people do need to open their minds to the possibilities.

  2. Oh, Yes, indeed! We need more people with open minds. What a wonderful world it would be! The possibilities are endless.

  3. Hi friend,
    I share your enthusiasm for AutCom, where anyone is welcome to express themselves in the manner of their choosing, which frequently is through FC. I, too, shared my experience with a friend who is often sad, lonely and frustrated. Although he learned to express his thoughts through FC almost 20 years ago, he is able to communicate very little in his group home run by an administration that simply doesn't believe FC is valid. He doesn't speak, uses only a few signs, and is rarely offered pictures to use for choicemaking. Yet he smiled as I described the many people using FC at AutCom --some as independent typers, some as presenters, some as part of a very warm and accepting audience.

    We both hope that some day he'll have an opportunity to live in a home that will be supportive of FC, but that seems a long way off. Money in our state is very tight, and few agencies are able to provide spaces for new residents. Also,the state is trying to move individuals out of a nearby institution (good move!) into the few openings that do turn up in local group homes that might have a more open-minded view of FC.

    So, I visit him when I can, we chat, and I try to keep his spirits up and his hope alive. Our day will come.