Disability Stuff

08/06/2024

Hi everybody this is Jessica Posting on my disability stuff page. I had a wonderful day at camp. We did music, games and coloring. What did you do today?

I had a very stressful morning. My service dog Mac threw up all his breakfast. I felt anxious and I wanted to stay home to keep an eye on him. He is my baby and my service dog. Did you ever have a dog that got sick before? what did you do? Thank you for reading my Facebook post.

08/01/2024

Hi ! It Is Jessica. I am Wanting to post something on Facebook today. I take medicines for seizures daily. I take epilepsy medicine. I try not to get frustrated. sometimes I do not want to take it in the morning but I have to. And it's not easy for me to accept it. I need a lot of guidance to take it. I need a lot of help to take my medicines. Can you tell me how you feel about this post?

07/30/2024

Today I want to post something on my page. Today I want to talk about how I feel about being a disabled person. Today is Tuesday and it it's a lot for me to get up in the morning but this is the last Tuesday of ESY 2. I just want to talk about my disability and how I get around from day to day. I need a lot of help With personal care needs. How do you feel about needing help? Does anybody feel alone? I don't want to feel alone that's why I post this on my page. Do you ever feel alone or out of sorts if you do can you tell me why?

07/25/2024

Hey Facebook community! What is everybody doing this summer? Thank you

07/24/2024

Hi everybody this is Jessica practicing Voiceitt and sharing to Facebook.

I want to post something on Facebook today. . I want to talk about my disability. And how I feel about people taking care of me. I would like to educate people on how to treat people with disabilities. I want them to understand how to treat people. How do you feel about this post?

I want to know how you guys feel about me posting this on Facebook. please let me know.

07/22/2024

hi everybody this is Jessica writing a Facebook post from Voiceitt. I did want to share how grateful I am for a community on Facebook! I just want to keep our community going. how do you feel about it? What is everybody up to on the weekends?

07/17/2024

Hi everybody, I use an app called VoiceItt 2 that translates my speech to text and I can use it if someone is having trouble understanding what I’m saying. It does a good job understanding my speech but I wish it could integrate with the texting app so I can text people.

Siri on my iPad doesn’t understand my speech as well.

My question is does anybody have any suggestions for a way for me to use an app that could help me with this? It would have to work with my iPad’s texting app since Siri is not an option for me. I could really use some advice on this topic!

07/16/2024

Hi everybody, these are my 2 angels, I wouldn’t know what to do without them! Especially my special angel, Mac!

Mac helps helps me when I’m upset and Jack makes me laugh just by being himself 😊

07/05/2024

I just posted this on my personal page but wanted to share here too…

Hi everybody, I have some exciting news! Me and my classmates applied and got accepted to speak at an Adult Transition conference at CHOP on October 21st! I don’t have all the details yet, but I have a speaking part about personal care and how important that is for people with disabilities like mine.

Anyone have any tips for me about how to prepare and not be too nervous? Thank you!

05/28/2024

I Hi my Name is Jessica I want to post about life here at school. I am trying to get therapy dogs into school. Do you have any suggestions on therapy dog organizations? please email it to me thank you

The reason I am doing this is because I want it it be an easier transition into the residence for the younger students. I know that it is very hard to be away from home and with new peers. I want to make it easier. From my personal experience, my dogs have always brought me a lot joy and comfort.

04/02/2024

hello I'm Jessica I want to talk about my disability and how I am coping with it day by day and how i am dealing with it. I get very frustrated by my technology as it sometimes does not work. Right now, I am trialing Voice IT to help me write my posts for social media. It is doing good but has its moments. I have no more patience with my technology at the moment. I want to have more patience with myself because I don’t right now.

Does anybody have any inspirational poetry to share or any advice?

03/11/2024

Hi everyone. I’m sorry I haven’t been keeping my page updated but here’s a little update. I am still fighting my pain from having both my feet operated on. During my 2 week recovery at home, I read a book to keep my mind off of my pain. Here’s a quote from the book “No F@@@@ given” by Sara Knight that I like:

“Asking Can I control it? Is the standard by which you measure whether something is worth your worried - and what, if anything, you can do about it.

If you can accept that the sky is blue and water is wet and macarons are a disappointing and borderline fraudulent as a dessert, you can accept te things you can’t control.

You don’t have to like it; you just had to accept the reality of the situation.”

Some days I can’t control my emotions and pain but I’m trying to accept that I’m in discomfort right now. It’s just not easy right now. I’m glad I have my “pain buddy” to help me along (Mac).

02/17/2024

Hi friends, I’m in the Girl Scouts and part of the HMS troop. I am selling cookies if anyone is interested.

Through this site, you set up to have them delivered to your door. There is a shipping cost, unfortunately, but it is convenient!

Please order through my site, here’s the link:

That's right! You can order your favorite Girl Scout Cookies from me online, all while helping my troop and I do great things in our community and beyond! Check it out.

02/14/2024

I want to talk about my upcoming surgery. I’m feeling like I can’t walk right. This will help my anxiety level . I want to get it done before I age out of AI DuPont. I’m feeling scared to move on to adulthood. This means I will have to find adult doctors and I don’t want to have to go through that long process. My mom has recommendations from my doctors for new specialty doctors for adults living with cerebral palsy and other differences.

01/01/2024

Hi everyone, has anyone ever used a compression pump? It’s usually used on legs and is for circulation problems. I am currently looking for one so if anyone has any recommendations please send them my way. Thanks!

12/31/2023

Hi Facebook friends, I’m sorry I haven’t posted in a while, but I have an interesting post.

I went to StretchPlex on Concord Pike this past week. I’ve been there twice now and I really like it.

My leg muscles are very tight, I have high tone and sometimes muscle spasms that get worse at night. This means my legs hurt like heck a lot! This is probably a result of removing my baclofen pump. But, no way am I going back to that!

I have to find a better way to manage my spasticity in my legs. I was desperate for some help and relief so I decided to give StretchPlex a try.

I found Mathew (owner of StretchPlex) and he assured me over the phone that he could work with me. I was a little nervous because of my disability, but Mathew made me feel very comfortable.

He has been able to stretch my legs and help me relax. Going to him makes me feel better and it helps me sleep better at night. Mathew has been wonderful and accommodating!

I would recommend StretchPlex to anyone who has tight muscles anywhere in their body and needs some help or relief. It makes a big difference for me and I like feeling that way.

I plan to continue going as long as I can! Here is a link:

Whether you're looking to join a gym, try a new fitness class, or receive personalized care from our team of skilled therapists and trainers, our Concord location has something for everyone.

11/28/2023

I want to tell you about how difficult it is to take care of a disabled child. It is very difficult to take care of somebody who has a disability or difference. I think I need to recognize the people who take care of us. I think we need to advocate for people that don’t have coverage. I want to recognize my parents for helping me when I didn’t; have nursing coverage. I appreciate it because some people don’t. And I just want to recognize it. }

11/13/2023

Hi Social Media friends,
Don’t take offense to what I am saying but it is real. I am talking about nursing coverage. I depend on nursing coverage for a medical need and if I have a seizure without a nurse then I won’t get the help that I need in a timely manner. I like to educate people on nursing care because a lot of people don’t have nursing and that is very sad. I just want you to be aware. Unfortunately, there are not enough nurses or PCA’s for the amount of people who need it. I feel very fortunate that I have nursing coverage.

Make sure you appreciate the care that nurses and PCAs give to you. As an individual with disability stuff going on, I need to start posting more on my page. Does anybody have any positive or frustrating topics that have happened to them that they want to discuss!

10/14/2023

Hi Facebook friends, I want to share a link to a vacation house rental that is fully handicap accessible.

It’s in Orlando, Florida, about 15-20 min away from Disney World. It has a ceiling lift to help me get on and off the potty and get in and out of bed. The bed is like a hospital bed that raises and lowers and the head lifts up etc.

There is also a lift to get in and out of the pool and hot tub. There is a bath chair for showers too (have to bring your own sling).

The kitchen is accessible, you can pull your wheelchair under the stove and sink. You hit a button and the cabinets come off the wall and lower down for access if you’re sitting in a wheelchair.

There are 6 bedrooms and 4 bathrooms. 2 of the bathrooms are fully wheelchair accessible.

This is my favorite vacation spot because it has a lot of accommodations like home.

The cost is reasonable for a week, it’s really a great deal! I’ve stayed here twice and would definitely like to go back again.

I’d recommend this for anyone who needs these accommodations and also wants to go to Disney…who are very accommodating too!

A stunning wheelchair accessible villa with adaptations including hoists, wetroom and private pool

09/09/2023

Hi everybody, this summer has been a blur and mixed bag. There was a scary event and a surgery and recovery (had my baclofen pump removed, thank God because it almost killed me!)

But, there was some fun too. While recovering from my surgery, I did a lot of painting, a lot of couch time snuggling with my buddy Mac, and I ended up going to Lake George on Labor Day weekend. Lake George was a surprise because I was supposed to be at Mary Campbell center, but the s**t hit the fan and I ended up having to be discharged because somebody got Covid.

Even though it stunk to be discharged, I really liked seeing my family up in lake George, I haven’t seen them in a long time.

Tomorrow I will be dropping my stuff off at school to get ready for my 2nd year of residence. I’m ready to get out of the house and have a break from relying on nursing every day, day in and day out.

There are some new faces at HMS this year, I’m very nervous to meet them. But HMS is my home away from home. I feel very comfortable and safe there. I have my own people amd community there and I’m very excited to see them, especially my boo boo (which means LaTonya and Alicia).

I’m excited to start back leading adaptive yoga with Rachel and to see Keziah. I’m also excited to see my friends.

I hope everybody had a good summer. What did you do this summer? Tell me if you did anything cool!

08/07/2023

Hi my Facebook family, I just want to give you a little update on myself. I have been having a time of it lately.

Unfortunately I was in the hospital for 12 days. I had a 40 minute long seizure. I had to go on an ambulance to the ER and all this stuff happened. After I came out of my seizure, I was writhing in pain for a while until they started giving me the heavier meds that basically sedated me.

Then a few days later I lost my memory for a few days and didn’t know who I was, where I was or why I was there. I was sad and out of it.

I had the whole gamut of testing to figure out what was going on. It turned out to be all due to my stupid baclofen pump! The first part I actually went through withdraw, which caused my seizure, then I had too much causing toxicity, which is when I lost my memory and all that.

I am done with this pump! I am having it taken out this Friday. Good riddance!

Then after I got home, I ended up having a UTI, which stinks and my antibiotic is tearing me up!

I don’t know if anyone else has a pump, but did anyone else ever have this issue? If so, can you share your experience?

On a positive note, Mac was my hero. He was with me almost every day. And if I didn’t have my parents I probably would not be here right now.

07/19/2023

Hi everybody, I wanted to share a recent experience that was at first not good, but turned out good.

Last weekend, we went to the pool and I was really looking forward to going swimming. But, after we got there we found there was an issue with the lift that helps me get into the pool.

We asked the people working there to help fix the issue but there was a lot of confusion about how to fix it.

After a little while of all this, I was getting into the “yellow zone”, which means I was feeling anxious and upset because I couldn’t go swimming.

But, we lucked out because the CEO happened to come to the pool that day and just happened to walk by us and asked if everything was ok and if we were having fun. She had no idea of our issue that was currently happening.

She got involved immediately after hearing my story and worked to figure out what was going on and how to fix it. Ultimately, the issue couldn’t be fixed that day, but the CEO made sure the part needed was ordered immediately.

She then offered to take me into the indoor pool and I ended up swimming inside and still had fun. The CEO swam with me and hung out for a while with me and my family. She was very nice and accommodating to my needs.

The next day she contacted us to confirm the part was ordered and the issue should be fixed by this weekend so I can go swimming outside like I was really hoping for.

She turned my frown upside down 😊

Has anyone had a similar experience? If so, tell me what happened!

07/17/2023

Hi social media friends,I want to talk about a couple of things that I find therapeutic. Adaptive yoga is very very therapeutic. Recently I was able to start adaptive yoga at my school. Adaptive yoga is led by me and Rachel for the whole school every Friday which helps me when I’m feeling sad.

I want to talk about how painting is therapeutic. Today I was painting with my cousin (see pics)from South Carolina. Painting is very therapeutic for me. Hugs also make me feel good and I like to hug my cousin. My cousin is helping me post this and I appreciate her help and I am very grateful that she came over to paint with me so I want to capture this moment.

07/02/2023

Hi my friends

Today I want to post an article about self love. I wanted to share this article because it stood out to me not just because I’m disabled but everyone could use self love. It’s a different perspective on self love and check out the “3 peace’s”. Reach out if you would like to discuss the article.

The three tenets of radical self-love

06/22/2023

Hi social media friends. I am frustrated because I want to get out of the house but I can’t. Hopefully when mom is off tomorrow I can get out of the house. I’m at a breaking point because I’m sick and tired of being in here! I’m home from school this week and mom/dad still have to work so I’m bored. This is why I’m posting to get my frustrations out. I want to put a positive spin on this by saying I get to see my parents more but it’s boring while they are working. I have to take deep breaths!

06/16/2023

Hello my lovely friends! Today I wanted to talk about mental health. It has been a crazy week. Starting off today, I was very concerned for my pca who was not feeling good. Then, I attended and performed in the bell choir at graduation. Graduation was emotional but I had emotional support. I am very thankful for social workers! Make sure you talk to someone about how you are feeling. If you need me I am here! Have a good 3 day weekend! I am going to do my best to post this weekend!

06/04/2023

Hi my social media friends. Today I wanted to talk about what it’s like for me to have a meltdown. So here it goes, last night I had a brief meltdown that my “Angel” helped me with. While I was having my meltdown (Crying spell) I was outside of our van and Mac was in the van. He barked (alerted) to get my parents attention so that they would get him out to sit with me and calm me down. Mac provides deep pressure to my chest (DPT)and licks my face to calm me down. I had a busy day and felt out of control and overwhelmed which triggered my meltdown. I am very grateful for Mac, he is my Angel! I just wanted to give you a little window into my world

05/21/2023

So I am having a debacle with nursing. Finally after 5 months, an agency reached out to us for night/weekend nursing to fill the shift we need. Now I am having an issue with my insurance getting the authorization handled in a timely fashion. And I’m not happy about this! We don’t want to lose the nurse while we are waiting but understand she doesn’t want to work for free either. It is going on week 3 of dealing with this. The insurance requirements suck and it just seems like they make it so difficult that you give up, which is what I think they want. I feel this is ridiculous! It would be great if the insurance folks had to live one day in my world. Then they would approve more quickly the needed services.

05/16/2023

Hi Friends! Sorry I have not posted in a bit as I am planning my upcoming support group. I do have this article to share! It it called ‘I love and hate my disabled body-and it is ok.’ I have very similar thoughts of loving and hating my body.

Tracy Cohen was diagnosed with cerebral palsy at the age of three. She shares her complex relationship with her body as she deals with her disability.

04/11/2023

Hi Social Media People! Today, I am going to share something that I am doing next week. I am running a support group. The first segment of the group is radical acceptance. To me, radical acceptance is the idea that you can’t change that you are in a wheelchair but you can change how you respond to it. The activity that I am going to do is have all participants write on a piece of paper what frustrates them. After we have a discussion about what radical acceptance means to them, we will rip up the paper and put them in the bottom of the flower pot. We will plant flowers over it. The flower will represent growth, radical acceptance, change, and positivity.

What does radical acceptance mean to you ?