Communication and Independence

Communication in its many forms is really the key to success in being independent.  It is how you gain information, it is how you socialize, it is how you access your environment.  You need communication – whether it be oral, with a computer, rapid prompting or whatever.  It is essential for independence.

Being a successful “on the spot communicator” is still difficult to me and I often think I present myself as someone who has “no clue” as to what is going on around me.    I have difficulty communicating.  I realize it, but to become independent in life, it is a challenge I am willing to work on.  I work on it daily, learning new motor plans for typing and trying to get comfortable enough to just sit down and type without someone next to me, prompting me to keep going.

I have a lot of anxiety about communication.  For many years, I had no way of expressing myself.  I had wanted to, but could not, so I shut down.  When I finally started to type, I had so much anxiety over it.  I was afraid that I might say something in the wrong way.  I still have that fear which is why I prefer to have someone sit with me while I type.  Sometimes you will see the person’s hand on my back.  This isn’t because they are prompting me in any way.  It is a comfort thing for me.  I want to know and have a tangible sign that they are with me, that they see what I am writing and that it is acceptable. 

I am slowly starting to get over this fear though…

I do type more and more on my own.  These blog entries, for example, I type on my own.  They take weeks but I do type them independently.  Someone is in the room with me, but he is not touching or prompting me, just helping me with some of the editing.

This is a big step for me. 

At this point, I just want to reach out to all those people who may have something to say but can’t because of motor planning issues, because your voice doesn’t work right with your breathing – these are all physical things.  They do not affect your mind.  You have a great mind and push forward to let people see that and know that.  I was lucky enough to have a supportive family.  I am hoping that just having this blog out there in cyberspace, that a caregiver of some kid who can’t talk will see it and begin to understand that just because you can’t talk like neurotypical individuals, it does not mean you do not have something to say.

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4 thoughts on “Communication and Independence

  1. Paul,
    I have read every one of your posts as soon as I get the email updates. I love to read your perspective. It is the only blog I read consistently. Thank you! I hope that doesn’t pose any more pressure on you, as your communication is beautiful and a useful part of the conversation.

    I am a parent of a non-neurotypical child, he has Sensory Processing Disorder. Through your writing I see things about my son that I would have never seen. Your commentary about needing someone present is very different from my perspective, yet very helpful for me to hear as my son craves comfort from presence as well.

    I can’t thank you enough for the time you put in on this blog. I don’t truly know the effort it takes you but I can appreciate how inspired I feel after every one of the posts you have written. This helps me be a better parent to a non-neurotypical child, and we both thank you profusely.

    As a constant learner, I feel like I should want to learn more about sensory process disorder, but I can’t find the right space to learn it in. Your communication of the topics helps me find different ways to learn about it, and some of this content is never expressed fully in print as the human touch is often left out of textbooks.

    Thank you.

  2. Paul, thank you for your very interesting blogs. They are very helpful in understanding what you are going through and all the hard work you are doing to open the eyes of others.

  3. Hi Paul,
    I am a mother of 22 girl and she is learning to type independently since introduced rpm in 2014.
    How long it took you to start to type independently?
    It would be great to know more about your feelings around you first time started to type and what have you typed by then? My daughter is 22 and she spells that autism is the feeling of loneliness. She wants to talk but she says /spells that she does not have words to say things. She is beautiful and she would be grateful if you want to e mail her. Would you be interested to be her penpal?
    krystyna ( elizabeth’s mom)
    Liz’s website with her paintings :
    http://www.lizsartdesign.com

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