April Group Discussion

Any ideas for our next blog post?

Christopher: I want to ask everyone what they like to do for fun. It would be good to talk about how some of the things I do are just loops and not really something I like. Like I listen to kids music a lot but I mostly hate it. Part of my brain gets stuck in the routine of it. It is a  loop only. For my own real enjoyment, I like to listen to rap. 

Joe: I have similar loops for me it is Barney. I like how you explained it like part of the brain gets stuck. It is like part of my brain finds comfort there but most of my brain finds it annoying. Really I like watching documentaries. 

Dylan: Loops are hard. Only ever feel an omen or something of loops. Like I have a sense they are starting. I get anxious. 

Maudey: I have lots of loops. I really love music but sometimes I really get stuck on a certain sound or part of a song. I have to play that part over and over or pause and play a bunch. It is annoying like Joey said. 

Joe: Yes lots of the time I don’t want to be doing them. I say the word french fries a lot but it is a loop. Most of the times I say it I don’t actually want them. 

Dylan: It is hard that our spoken words are not always accurate. Sometimes the thing I want to say gets lost on the way to my mouth and something else or nothing comes out. 

Jack: Yes lots of my speech is unreliable. It is always good to check on the letter board because there I am always accurate. 

Maudey: Most of my speech is loops. I always have lots to say please don’t think all I say is accurate unless I say it on the board or my ipad. Sometimes my loops are a lot but I like when people loop with me because it helps me feel connection.

Joe: Verbal loops can be hard because it is tough to tell if it is accurate speech or a loop. Maudey is interesting because it is usually easy to tell a loop from purposeful speech but maybe that is because I know her so well. 

Dylan: I also will speak mostly only to answer a question. It is hard for me to use my voice unless the other person starts first. 

Can you explain why that might be?

Dylan: That is what others would call initiation challenges with my speech. 

Maudey: Getting back to what Christopher asked about what we like. I love audiobooks or when someone reads to me and taking walks and dance parties. I love meeting new people. 

Christopher: I love how you all talk about your verbal loops. I am truly a non-speaker, meaning that I don’t really have any speech so it is interesting to hear about. 

Rose: Happy other people get frustrated by their loops too. I like these talks because they remind me I am not alone. Challenges make me feel alone but then you remind me you are all in them with me. I love that we have community. I really really really make myself crazy with these loops. I am embarrassed by them. It makes me sad my body challenges me like this. Have you all had days like this too?

Alex D: Rose, you know I have days like this too. Challenges have a way of making you feel alone. Challenges try to break you down. How we always find the strength to get through stuff like this is really exceptional. I feel you are stronger than your loops. I get through by telling myself I believe I can get through. Happy to say I know you can get through too. Always proud of you Rose. 

Maudey: I am thinking without just explaining loops this may be confusing for some people. Loops are not purposeful things. Bodies with apraxia don’t have a lot of control. 

Can you explain apraxia for anyone who doesn’t know?

Maudey: Apraxia means our brains and our bodies have broken communication with each other. For someone with apraxia like me by body does not listen to my brain a lot. Loops are things my body does without permission from my brain. Loops can also be patterns you get stuck in. Like listening to kids music you don’t really like, like Christopher said. 

Christopher: Maude that was the best description of apraxia ever. 

Alex D: Awesome explanation, Maude. My loops are so frustrating. I repeat things I hear on TV. I hate when people comment on it. I like listening to your verbal loops, Maude. I think it is cool you use them to converse and connect. Mine embarrass me but I pride myself on holding them inside when I can. It is knowing that I have control that gives me strength. Even though I don’t have it always. 

Christopher: I hear you about being embarrassed, Alex. I am self conscious a lot. It is better now because so many people know the real me now that I can share myself through spelling. 

Jack: I think we all respond to our loops differently. I am sure that we are all differently able to control our bodies. I am sure that we are all empathetic towards them. I mean that we are all very understanding of each others loops. That helps. It is community. 

Joe: Mind over matter. It is getting easier for me to feel I have control over my body. I am working hard on it. Jack I love that we are a community that understands loops. 

Rose: It is so hard to have this OCD. It hurts my mind. It really is discouraging to have a body so out of control. Joey, how did you get more control? I want that too. 

Joe: Rosie the answer is I can not say. I tried it all so I don’t know what did it. Try all the things you can. Massage, therapies, workouts, it is all helpful. I still have bad experiences with control but it is getting better. 

Rose: I am sad today, even tired to have this OCD that is not me, not my true self. I believe in this: I am in here. My body takes over, but my brain is me. I am in here. I am in here. It is a bad many days. I will happily get through. I am strong. I am stronger than the OCD. 

Maudey: Rosie that was so beautiful. Sometimes I feel discouraged by my body when it does not cooperate. I know you are stronger than the loops. It is good we are here to encourage each other on bad days. You believe in me and I believe in you. 

Anything else to add?

Alex D: Feels like we said it all. I think we should end it on what Maude said. It is perfect. 

Jack: No edits. I think we should end on Maudey but I never responded to Christopher’s question. Christopher, I love the beach. Surfing and swimming are the best. 

Rose: My answers were so real and honest. I really want to keep them that way. I love that Maude had a perfect ending too. Really love it. Challenging but honest. Won’t it help people to read challenging but honest things? Lets keep it all even though it is scary to share.