Tag Archives: cerebral palsy

#CPChatNow Recap- 8/26/2020

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This past week in #CPChatNow was intriguing as always. Members discussed recent accomplishments and life events and their reason for joining Twitter. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

I would like to first highlight some cool things going on in member’s lives. Chris has developed a survey attempting to measure what people think students should learn about disability. Please help her out by taking the survey!

chris developed a survey for her masters project about what students should know about disability

Next, Zach shared his progress in the Race Across Ohio. He has walked 43 miles in 18 days towards his 60 mile goal.

zach tweets he has walked 43.75 miles in 18 days towards his 60 mile goal in the race across ohio canton to cleveland event

Finally, Zach asked what prompted members to join Twitter. Members shared various reasons, but they all centered around community.

zach asks why members joined twitter tweeting he joined because a client required he had social media accounts to use for promotion, but he has stayed because of community. chris tweeted she was doing disability stuff
shira tweeted she joined twitter because of #cpchatnow. tonia joined because of the dancers from so you think you can dance having accounts and she wanted to keep up with them

This brings us to our Extend-The-Conversation Question: What is the main reason you use social media? Please share your answers in the comments.

the extend-the-conversation question graphic. What is the main reason you use social media? There is a graphic of a hand holding a smart phone with a hashtag

Thanks for reading! Please join us each Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 08-12-2020

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This past week in #CPChatNow was bouncing as always. Members discussed adventurous things they had done in the last week, features of architecture, and aspects of their CP they have had to reconcile. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach asked members what adventurous things they had done in the last week. Members tweeted various things that really are not that adventurous, but seem adventurous and risky in this COVID pandemic.

zach says his last few days have been adventurous with a fall at a new library branch and he signed up for the race across ohio. he tweeted that he was ultimately fine after the fall
chris tweeted she got her bacolfen pump refilled. heather tweeted she got an MRI that is rescheduled and she found what she needed at canadian tire

Next, my friend who is an architect happened upon #CPChatNow and we discussed my preference of ramps versus lifts.

i quote tweeted a thoughts of dog tweet proclaiming that stairs are ridiculous. my architect friend asked if i prefer a ramp or lift stating ramps take up space where lifts save space but are ugly and hard to use. i tweeted i prefer ramps because i can use them independently and not get stuck

Finally, Zach asked members what they had struggled to reconcile with their CP.

zach asked what parts of cp people had a hard time reconciling.

Members discussed various difficult parts of reconciling their CP such as other’s perception and physical difficulties:

zach shares he used to be embarrassed about people being different, but regrets from high school allowed him to be ok with being different, chris tweeted they don't tell you about the pain and tweeted she is thankful about her pump, I tweeted I felt like I needed to behave a certain way like walking instead of using my wheelchair

This brings us to our Extend-The-Conversation Question inspired by Chris. What would you tell your younger self about CP? Please share your answers in the comments and join us each Wednesday at 8 Eastern at #CPChatNow.

orange, blue, and green #cpchatnow logo in the upper right hand corner, extend-the-conversation question in green with What would you tell your younger self about CP? below in black, a picture of a white rock with wisdom in black text sitting on a brown ground, #cpchatnow in white text with a green background

-Devin

#CPChatNow Recap- 7/29/20

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This past week in #CPChatNow was festive as always. Members discussed a new book by a disabled author, online dating, and their oldest friendship. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

#CPChatNow always loves to highlight projects produced by disabled creators. Zach highlighted Disfigured: On Fairy Tales, Disability, and Making Space (Exploded Views) by Amanda Leduc.

zach asks if anyone has heard of amanda leduc's book on fairy tales and disability. blemi tweeted that she is intrigued, zach tweeted the book just came out and he bought the book after checking it out from the library.

Next, Chris asked whether people had success online dating and mentioned he was thinking about joining match.com. Members shared various levels of success, but I wanted to highlight people who have had success to show that finding love with a disability is possible.

chris asks if people have had luck with online dating and said he is thinking about joining match.com. i shared that i am engaged after using okcupid with a picture of me and my fiancee.
lorna tweeted she met her husband on match 11 years ago and that it is a good site for sifting out time wasters and matching.

Finally, #CPChatNow talked about something that’s very important, friends. Members discussed their longest friendship and why they felt it had lasted so long.

zach asks what is member's oldest friendships and the keys to maintaining it. kate tweeted she has a friendship of 14 years and she is 22. she thinks the key is being there for each other, but recognizing they can't talk everyday.
paul tweeted his longest friendship is his wife of 20 years who he has known for 21 years. he tweeted the key is they are different from each other, but that makes it work.
heather tweets she and her twin sister are close with a friend they met at age 4. they have been friends for 38 years. heather tweets it never feels like time has passed when they talk

This brings us to our Extend-The-Conversation Question: What is the key to your friendship with your best friend?

extend-the-conversation question in white at the top of the graphic. a picture of two women jumping on the beach with waves crashing in front of a sunset. What is the key to your friendship with your best friend? in white below them with the #cpchatnow white logo in the bottom left hand corner

Thanks for reading and please join us each Wednesday at 8 Eastern at #CPChatNow.

-Devin

#CPChatNow Recap- 7/15/20

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This past week in #CPChatNow was cracking as always. Members discussed various topics like their brags for the day, creating their own podcast, life hacks, and what part of the day they feel at their best.

Zach opened the conversation by asking members what their brag for the day was. He shared that his book is now offered at the library he works at:

zach tweets he spotted his book while working at the library. an image of zach's book on a book shelf between two books.

My brag was advocating to my apartment to finally finish a wheelchair ramp on a sidewalk:

i tweet my brag is advocating to my apartment to finally finish a wheelchair ramp. an image of a wheelchair ramp by a pickup

Travis tweeted about starting his podcast, Off The Crutch.

travis tweeted about starting his podcast, off the crutch. he came up with the name because he uses forearm crutches.

Amanda tweeted a Buzzfeed article with tips for people with limited mobility. This might be helpful for some people with CP.

amanda shared a video from buzzfeed about 35 tips from people with limited mobility

Finally, members discussed what part of the day they felt the best at:

zach asked what part of the day people feel their best at. zach tweets he would've said 7-10 pm in college, but now he said in the morning. i tweeted right after i take a shower, veronica tweeted in the early afternoon.
karen tweeted she feels better at night because she is still sleepy in the morning so she has less balance.

This brings us to our Extend-The-Conversation: What is your favorite part of the day?

the extend the conversation question graphic. a picture of a sunset with a person standing in front of the ocean. extend-the-conversation question in white with what is your favorite part of the day? and the white #cpchatnow logo in the bottom right hand corner

Thank you for reading and join us each Wednesday at 8 Eastern on Twitter at #CPChatNow

-Devin

#CPChatNow Recap- 7/1/2020

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#CPChatNow opened up July discussing a wide range of topics. Members discussed Canada Day, critical topics such as their favorite type of M&M’s, and if it was difficult to obey their limits. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I would like to highlight an important conversation The Accessible Stall podcast had about systemic racism and abelism. You can find the episode here.

i tweet about the accessible stall podcast episode on systemic racism

I also wanted to highlight a recent blog post by co-host, Zachary Fennell, about his experience during the Cleveland UCP Race to Empower.

zach tweets about a guest blog post about cleveland UCP"s race to empower

July 1st was Canada Day and Blemi tweeted that it was very different than the normal celebrations due to the COVID pandemic.

blemi tweeted everything is canceled so she was having a low key canada day at home, zach asks about usual activities, blemi tweeted her hometown usually had a parade and rodeo and there are always family get togethers. zach tweets that sounds like fun and a low key day is good sometimes

Next, talk turned to a very important question, what are member’s favorite M&M’s. This was inspired by some delicious Crispy M&M’s I was enjoying.

i ask what people's favorite m&m's were. chris tweeted peanut or nutella.

Finally, members discussed a common struggle for folks with CP, obeying their limits.

zach asks if it is difficult for people to obey their limits. zach tweets his question was inspired by passing on some sub opportunities at work. i tweet i sometimes have trouble with walking long distances.
chris tweets he does not push his physical limitations and it has been a struggle because he used to resent his cp. he also tweets his immune system has never been strong and all 4 sides are affected so he wishes he could be more physically active.

This brings us to our Extend-The-Conversation Question: What is your favorite candy?

the extend-the-conversation graphic. the orange, blue, and green #CPChatNow logo is in the right hand corner, extend-the-conversation question is above the question in green with the question of what is your favorite candy above a picture of M&M's on pretzel sticks. #cpchatnow is in white text behind a green background

Thanks for reading and be sure to join us each Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow- 6-10-2020

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This past week in #CPChatNow was busy as always, but this week brought new members. Members discussed the Moro Reflex and media representation of CP. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap!

First, members discussed a dreaded part of CP for some people, an exaggerated startle reflex.

amelia asks if a startle reflex is a thing with cp and a german sheppard startled her. i tweeted about dogs and seth tweeted about storms.

Karen tweeted about the name for the reflex, the Moro reflex.

karen tweets some links explaining the moro reflex. amelia tweeted she did not know it had a name. tonia tweeted lots of aspects of cp are rarely discussed

Next, talk turned to different representations of CP in the media. Members discussed the Netflix documentary Crip Camp and various issues of representation in the documentary.

karen asks what people thought of the depiction of cp in crip camp. heather tweets about surpirse of cp being at the low end of hierachy. i tweet about how much of that is how visible cp is
amelia tweeted she was happy to be represented in crip camp, but she didn't feel she could relate. karen tweeted cp comes in so many forms.

Talk also turned to the sadly canceled ABC show, Speechless, and issues related to representation. Members had varying opinions on whether they could relate to JJ.

zach tweets about how some felt they could not relate to JJ"s character. karen tweeted about how CP is so different from each person that many don't use a chair or are nonverbal. karen's main problem was too many subplots. I tweeted my agreement

Karen connected the lack of a ramp in the season 2 finale of Speechless with the abelism highlighted in Crip Camp.

zach tweets about a favorite scene from the season 2 finale when an award show director discovered there was not a ramp. i tweeted about accepting an award in the same situation. karen tweets she won an award in college and was told a ramp would be a fire hazard.

This brings us to our Extend-The-Conversation Question: Have you ever been denied recognition due to physical inaccessibility?

Thanks for reading this week’s recap and join us at 8 Eastern each Wednesday on Twitter at #CPChatNow!

-Devin

#CPChatNow Recap- 5-27-2020

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Hello #CPChatNow! As Matt Hardy would say, the past week in #CPChatNow was wonderful! Thanks for stopping by for this week’s recap. This is your co-host, Devin Axtman, taking you along for the ride.

We will begin this week’s recap by discussing an aspect of CP that is certainly annoying, hamstring stretches. Zach made a video of his different hamstring stretches and shared it in the chat.

zach asking what hamstring stretches people do and sharing his youtube video

Also, Jorge checked in with an update on his plans for graduate school:

jorge shared he applied to UVA, Rice, McCombs, Syracuse, UNC, and wake forrest

Finally, this brings us to a cool story about the invention of an adaptive gaming controller for people with disabilities:

i tweeted a story about an adaptive gaming controller. zach tweeted he is not a gamer, but related to something being annoying as hell like OT

Jen pointed out an obvious issue if people do not play XBOX, they could not use the controller:

jen pointed out that if people didn't play xbox, they couldn't use the controller.

This bring us to our Extend-The-Conversation Question: What common household adapted item do you use?

Thanks for reading and join us each Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 4/22/2020

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This past week #CPChatNow was out of this world on Earth Day! Members discussed Earth Day, trying new things while staying at home, and their thoughts around reopening. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

April 22nd was the 50th anniversary of Earth Day. Jorge asked if folks were enjoying Earth Day.

Jorge asked if people got out to enjoy the earth on Earth day. Veronica tweeted her husband created a sitting area in her backyard where she drinks her coffee.

Next, members discussed trying new things while staying at home during the COVID pandemic. I discussed cooking more while at home and Hailey discussed trying a latch hook kit:

I ask if people have tried new things while staying home. Hailey tweeted about trying latch hook kit, but is worried about her motor skills

Jorge asked about a common topic that is impacted by the COVID pandemic, colleges and universities.

Jorge asks if I think colleges will open up in the Fall. I tweeted I felt it will be a patchwork of plans, but they would try. Jorge brings up the issue of international enrollment. jorge tweets he is applying to several schools.

Finally, Zach asked where different member’s home states are in the COVID pandemic reopening.

Zach asks where each member's area is on reopening. Grace tweets she is relieved Massachusetts is following guidelines and not considering reopening. I tweeted I am nervous that Texas is starting to open. I am nervous about going back to work and am nervous if I will continue to be able to work from home.

This brings us to our Extend-The-Conversation Question: What new things have you been trying while staying at home during the COVID pandemic?

extend-the-conversation question graphic. An image of a green road sign reading discovery with the extend-the-conversation question and multicolored #CPChatNow logo in the upper right hand corner

Please share your answers in the comments and join us each Wednesday at 8 Eastern on #CPChatNow.

-Devin

#CPChatNow Recap- 4/8/2020

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This past week in #CPChatNow was intriguing as always. Members discussed strategies for dealing with the COVID stay at home situation, special education during the pandemic, and finding connections via the CP community and blogging. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

#CPChatNow member Tonia has been sharing concerns related to paying for her laundry. She shared an awesome story of a friend helping her out. This shows the power of community during the times we are in.

Zach asks Tonia how she resolved her laundry quarter issue. Tonia says that a friend with CP sanitized 100 quarters and sent them to her

Next, Zach and I talked about an issue that has been in the news a lot lately, virtual learning and parents. Concerns are even more amplified when you are helping your disabled child with their special education.

zach posts an article about virtual special education and mentions sped students may have advantages with distance learning since they are used to technology. i mentioned stuff has to be accessible for the technology to be used. i also mentioned difficulty of physical and occupational therapy
zach mentions PT by video and parents being stressed. i tweeted i would be nervous as a parent to mess something up and about access to technology stating many of my mom's students don't have access. zach tweeted he has learned many people don't have access to the internet by working at the library

Next, talk turned to forming connections with the CP community. Zach asked about the first people with CP we connected with.

zach asks about our first connection with somone with cp. i tweeted about a person in physical therapy. Tonia tweeted about a girl she met at camp for kids with disabilities at 13.

Next, talk turned to connections created with a common activity, blogging.

zach asks what got other people into blogging. tonia tweeted it was after reading the post of a parent of a disabled child and wanting to offer her thoughts. linds tweeted she was angry about a teachable moment with a coworker. tonia tweeted she feels obligated to teach others while linds says she does not.

This brings us to our Extend-The-Conversation Question: Do you feel like you need to teach others about having CP? Please share your answers in the comments!

the extend-the-conversation question graphic. the extend the conversation question is: Do you feel like you need to teach others about having CP? The multicolored #cpchatnow logo in the upper right hand corner, #cpchatnow on the bottom, and an image of a female teacher with a red book drawing on a chalkboard

Thanks for reading and please join us each Wednesday at 8 Eastern on #CPChatNow!

-Devin

#CPChatNow Recap- 3-25-2020

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This past week in #CPChatNow was interesting as always. Members discussed CP awareness, working from home, and famous people with CP. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

March 25th by coincidence happened to be Cerebral Palsy Awareness Day. Members discussed whether wishing people a happy CP Awareness Day was appropriate.

zach asked whether it's ok to wish someone a happy cp awareness day. heather asked why not. zach tweeted it feels weird and you don't wish someone happy breast cancer awareness. i asked why cp was bad. shira tweeted she did not feel it was good. zach tweeted it has positives and negatives.

Hannah also popped in to wish everyone a happy CP Awareness Day:

hannah said hi and wished everyone a happy cp awareness day.

Talked turned to the effectiveness of a common strategy for raising CP awareness, wearing green.

zach asked whether green is effective to raising awareness. i asked people know CP's color is green, heather tweeted she felt it was unknown by many, zach tweeted that people might notice something was happening if enough people were wearing green

Zach and I discussed positives and negatives of wearing green:

zach tweeted the positives for wearing green are seeing community and the negatives are what is actually learned. i asked about the negatives and he tweeted about the lack of substance in awareness.

Finally, talk turned to a common topic during the COVID outbreak, working from home.

i asked if people were working from home. zach asked if i liked it, linds tweeted that she was going to regardless of the pandemic, blemi tweeted she liked it and i tweeted there seemed to be less distractions.

However, Veronica tweeted about how the recent changes with the pandemic have impacted the availability of her work of scoring standardized tests:

This brings us to our Extend-The-Conversation question: How is CP impacting staying at home?

an orange, blue, and green #cpchatnow logo in the upper right hand corner, extend-the-conversation question in green with 'how is cp impacting staying at home?' below and a picture of a house with #CPCHATNOW in white with a green border behind

Please share your answers in the comments, join us at #CPChatNow at 8 Eastern each Wednesday on Twitter and most importantly, stay home and stay safe!

-Devin