For some time now I’ve had a dream to built a one to one aphasia / apraxia of speech conversation partner program. I haven’t really come up with a good name for the program but I can see the details clearly.
As time went on, the dream stayed with me; showing up from time to time when I was reading about aphasia awareness or after a group meeting, in my actual dreams and in the times when I lay awake at night and even when I’m trying to meditate. It just wouldn’t leave me alone.
I would tell myself ignore it. Put it out of your mind. It is too big of a dream. Who do I think I am? How could I possibly make it work? Would people even think it's valuable? I didn't share my thoughts with anyone. Then I thought, this is what I used to do at work, design programs, write grants and make it happen..... I’ll spare you more of my self talk for now.
I was finally ready to share it with the world. I tweeted about it. I told a few people about it.
Then I finally decided I would contact someone who could possibly make it a reality. Putting my idea out there was a bit scary, I don’t know why but I did it.
Here's what I wrote to Jen at the National Aphasia Association:
Pilot 1 to 1 Aphasia/Apraxia of Speech support program (name TBD) I am proposing to create a 1 to 1 support program for people living with aphasia (PWA) and apraxia of speech (AOS). As a person who is living with Aphasia and Apraxia of Speech, I know first hand how isolating having these communication disorders can be. I also believe that the best therapy, long term, is consistent practice in order to access neuroplasticity. Having access to real world communication that is highly supportive is important, but hard to find especially when you have aphasia/apraxia. Thankfully, there are many more opportunities for PWA to participate in groups online (i.e. NAA book clubs, Aphasia Resource connections, groups offered by Aphasia Centers) to reduce the isolation. These group activities give PWA interactions with other PWA and offer some opportunity to speak. However the amount of communication is limited due to the number of people on the zoom. This 1 to 1 peer Aphasia program would offer the opportunity for one PWA to communicate with one other PWA on a zoom platform (or some other way if they choose.) In order to be successful, participants should be able to carry on a simple conversation orally and be able to understand simple conversations. Volunteers (members) will register to be matched with another Person with aphasia (PWA). (Note: this is the area which I need a little help with. Should I organize a monthly zoom to introduce the program and get people signed up after? Could the people attending that initial zoom match themselves, find the person that they would like to contact with ? I am part of a stroke TBI pen pal program which matched me with someone who also had a stroke. They only asked a few questions before the match......) The peers will be asked to meet at least once per week. Meetings can be as short as they want and scheduled at a mutually agreed upon time and day. Support is so important. I would volunteer to check in with peer matches. A separate zoom at the end of the month for registered peers could help not only support but offer ideas for communication. it would be helpful to have a speech therapist attend this meeting to offer support and strategies. Eventually this monthly meeting might have guest speakers or offer an activity.
In the past couple of weeks I heard that the NAA in the next aphasia chat will put us into small groups based on shared interests. We can then connect one to one with each other after that. I was so excited! Could it be that my dream could really happen?
If you’re interested and have aphasia, please register and join the chat on Wed June 29 at 12 pm to see what happens.
To listen to the blog post, click on the link below:
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