“Honey, Everybody Cries in Speech Therapy”: Tools I Use to Make My Life Easier as a Person with Disabilities

I was about eight months into recovery from my concussion, sitting across from my neurologist for yet another appointment. Every visit I hoped and begged the universe that the doctor would “release” me and say that I was cured and could go back to my normal life. I had just started a new job as a program manager and was excited to challenge myself and dispel the idea that my executive functioning had been damaged and I would never be the “overachieving doer” I was so proud to be. Unfortunately, my neurologist said it was time to go to speech therapy for at least for six weeks. I was so upset; I didn’t know what to say.

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On my pilgrimage home from Reston to DC on the metro (if you’re from this area, you know how insane the commute is), I cried quietly on the metro behind  my sunglasses on. I didn’t want to go to speech therapy or any other therapy anymore! In my head, I was done with all the specialists, all the appointments, and all the endless commuting to said appointments. I was so tired of going to see people. I just wanted to be given that medical release saying, “you’re okay, welcome back to your normal life!”

I had just started working for a new organization and I had to tell my new boss, “Ellie”, that I needed time off work for speech therapy. It was difficult and embarrassing because I didn’t want her to think that she made a mistake in hiring me and that I wouldn’t be able to do my job. It felt like a mild version of “coming out:” having to admit I had an injury and I couldn’t perform as my best self, all while requesting time off as a newbie. Fortunately, she was understanding and empathetic.  As I spoke my truth, I started to sob. I sobbed at this new reality in my life that wasn’t getting better or going away. I tried to catch my breath in the middle of racing thoughts telling me “I’m stupid now, and why would she keep you around?” I cried at the fear this white woman would be like all the other white women bosses I had.

But Ellie was different. Instead, of my fears coming true, she responded with “Hey, I had to go to speech therapy as a kid. I’m dyslexic, and it helped set me up to be a better student.” Ellie was compassionate, empathetic, understanding, and supportive. She was kind and reassured me that I could take the time I needed and that I would be ok. A heavy load came off my shoulders (where all my loads tend to sit), and I told myself it was going to be okay and hey, at least for now, I still had a job.

Enter Speech Therapy

I made my appointment reluctantly and went in for my evaluation. The speech therapist knew what she was doing!

“I can’t find my words. I’m close to the word, but I can’t think of the actual word.” I said.

“Can you give me an example?” She replied.

“I was asking for virtual copies of a PDF at work, and someone snarkily said, ‘You mean electronic copies?’ I do that all the time, and all I know is that getting to ‘virtual’ was painful enough, and it wasn’t even the right word.”

“That’s perfectly normal; most brain injury patients need a bit more help when it comes to ‘finding their words.’ Don’t worry though; it will get better.”

During the evaluation, she nailed down all my issues. My difficulty with reading and reading comprehension, the chaos that my life felt like and my inability to organize it, my shitty memory and how I kept repeating myself and had no idea. How I was writing things every day but wasn’t sure if they were “real English.” Queue the tears! It was overwhelming to admit all the issues I was having so far into my recovery! Wasn’t I supposed to be better? As the independent boss b**** that I knew I was, I couldn’t handle knowing I needed extra support, #AllTheSupport in the different aspects of everyday life. The speech therapist comforted me by saying, “Honey, everybody cries in speech therapy.” With tears running down my face, I started laughing and felt better, immediately, because at least she had a sense of humor and this time, I had caught the joke.

The speech therapist and I worked together for three months. She gave me tools and resources, literally sitting with me and creating document templates I could use at work. She would say “try this and let me know how it goes this week.”  One time she printed out a weekly calendar and sat with me to fill it out, adding chores to the page so I could automate the little things that need to get done and that we waste so much brain power thinking about doing. Your brain is an incredible machine, and it is making decisions from the moment you wake up to the moment you go to bed.

What are we wearing today? Where am I supposed to be today? What’s for breakfast? Did I brush my teeth?

We are constantly thinking and processing things, so to give your brain a break and time to heal, we need to automate as many things as possible she said.

Below are the tools I use to make my life easier. Some are from speech therapy and some I’ve found along the way!

Boring Self-Care: Automation

Check out Hannah Daisy @makedaisychains on Instagram. She has a whole page on “boring self-care,” which are simple things you need to do but don’t like doing, like picking up your meds or getting out of bed every day. I feel like people think about self-care as going on vacation and or anything that requires money like a facial or massage when in fact, you can do things every day to take care of yourself and your needs.

My boring self-care includes doing laundry on Tuesdays because that’s what I wrote down on my calendar. My monthly bills and rent are set up on automatic payments, my credit score and bank statements come to my inbox, and most of my prescriptions are on automatic refill at CVS. The set-up sounds like work, but once you get in the groove, you don’t have to pay attention. I don’t have to go out of my way to make sure these chores are taken care of; adulting is hard, so make it easier for yourself and automate everything! You know that these things are happening, leaving time, space, and energy to focus on things that are more important and that require more brain power, like creativity.*

*Side note: Just so you know, everything The Melanin Collective does, is our very own creation. Every graphic, brazen language, and workshop experience comes from Kaitlyn and I’s heart, mind, and soul! We try to use as much evidence-based information and resources as we can find (and you’ll know what they are because we give credit where credit is due) but for the most part, everything you see we’ve made. The MC takes much time and much energy. We have a vision, and we work towards it, but this kind of stuff requires vast amounts of thought, so the more brain power you have to focus on your goals, the better.

Natural Free Reader (NR)

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For you to read, your eyes and brain need to work together. After the impact my eyes refused to look at the same thing at the same time, so I went to Occupational Therapy and then had to work with a neuro-ophthalmologist to get my eyes to be friends again. Part of my cognitive disability is my brain’s inability to translate all the information my eyes see. Reading is a challenge. I can read just fine, but it doesn’t mean that all the information is captured or processed. I tend to miss a lot of  information from emails, articles, and documents, so I use a text-to-speech app to help my brain process information.

I use NR in various ways. It has different voices that can read to you, and British Peter is my favorite! Anytime I get long emails, texts, articles, or documents, I enjoy listening to them and capture way more information than if I would have just read it on my own.

How I Manage Writing with Cognitive Disabilities

  1. I use NR to read back anything I write. This software helps me catch most mistakes and reassures me that my writing is in English. You’d be surprised how many mistakes you had if you read your writing out loud to yourself or have NR “play” it back to you.

  2. Grammarly: Grammarly is like spell check on crack. You can play with the settings and tell it what kind of peace you’re trying to ride or who your audience is, and it will double check everything from grammar to comprehension and easiness to read. Grammarly can be downloaded to your computer and is integrated into Microsoft Word, it has a chrome extension that can review emails and your writing online, it has a keyboard you can use on mobile, and they are currently testing it on Google Docs.

  3. My 3rd and best tool is Kaitlyn, my Co-Founder, and friend! Kaitlyn is the best copy editor and if you think I’m kidding, send her a message. check out her other business. [insert link to business]

My one critique about NR is that it doesn’t play well with busy websites. If you are trying to read an article where there are ads or pop-ups or just a ton of links, it confuses NR and it will either skip or not read anything at all. Also, if there’s image an image and there is no caption, it doesn’t know what to do and again skips or stops working. Because of this, we were intentional with our website, making sure we were 508 compliant hoping to make it easier for everyone to read but exceptionally simple for those using a reader.

Speech Recognition Software

My speech therapist recommended I use a speech recognition software that allows you to type hands-free and control your computer with the sound of your voice. After some research, I ended up purchasing Dragon Naturally Speaking. It’s supposed to be really cool. Personally, it’s a bit difficult to use, highly sensitive (misunderstands words, doesn’t play well with all mics and you have to have a mic, and automatically switching between commands and dictation), and not very user-friendly. Even the “Help Section” is kind of a pain. I’m trying to stick to it and use it more hoping that he gets more natural, (this blog was mostly dictated, but then I had to go in and format and correct the words it misunderstood), but so far, it’s saving me time and getting my thoughts on paper. Most of the time, I alternate between typing things out and using Dragon, and always go in to format and correct my writing. If they could have videos or a helpful help section that’s easier to use for people with disabilities, it would be so much better!

Blue Light Filters & Apps for Screens

Me, every time I had to use a computer when I had a headache.

Me, every time I had to use a computer when I had a headache.

From the first six months after my accident, I had a headache. Sometimes it was just a headache, and sometimes it was an earth-shattering, my-day-is-over, migraine. It was unbearable and easily triggered. In occupational therapy, I was told to put a blue transparent folder on my laptop. She said she didn’t know why, but it made her patients feel better, and that’s all that matters. Later, I learned all about blue light, and the impact screens have on our psyche and circadian rhythm.  

I use a blue light filter on my laptop and computer monitor like this one. My migraines are under control, but the filter makes sure I’m not damaging my vision, I’m not triggering headaches, and the privacy screen when you’re working outside of your office is a bonus. Most people with glasses have an anti-glare coating on their lenses; this is mostly the same thing. If you don’t wear glasses or you suffer from headaches, or you spend all day on a computer, do yourself a favor and get a blue light filter.

The Blue Light Filter- Night Mode, Eye Care app!

I know people talk about not sleeping with a cell phone or TV in the bedroom. I think that’s a great idea, but I’m nowhere near that phase in my life. I like to look at my phone at the end of the day and see what’s happening on Reddit or on social media. Because of this, I use a blue light filter app on my phone. It’s customizable and easy to use. With the filter on, you’re not tricking your brain into thinking it’s 2 p.m. Your mind and your body know its bedtime, so I read until I get sleepy.  No more sacrificing or interrupting your circadian rhythm, use this and some natural, soft lighting in your house after dark to help you get to sleep faster.

Spire Stone

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Spire Stone is a small tool that tracks your breathing and tells you if you are stressed or anxious. I got it because as a person with a brain injury, everything is more overwhelming than usual. It’s hard to keep up with your emotions and at the end of the day, exhausting. I must spend so much more time focusing on people, what they’re saying, and making sure I’m capturing their message, which it became too much. I was already an anxious person, so the concussion made everything worse. Spire is “like a Fitbit but for your emotions.” It can be clipped to your bra or your waistband, has different vibrations that notify you via an app on your phone about what is going on. The different buzzes tell you different things, but I haven’t learned them or remember what they are, but I can look at my phone see if I’m not breathing correctly, tense, stressed, focused, or calm.

What I didn’t expect to learn was that I don’t know how to breathe or that I’m a shallow breather! Every time it buzzes, I take a deep breath because I know that regardless of the notification, I’m probably not breathing correctly. It serves as a good, physical reminder to breathe and check-in with yourself.

The last thing I’ll say is that Spire is waterproof, and its battery life is ridiculous. I don’t know any device in 2018 that can last for a week or so without a charge. I can transfer my spire from bra to bra, and it doesn’t matter. Eventually, I’ll have to charge it, but it’s not a constant thing like my phone, and I appreciate that. It just makes picking up this habit a lot easier.

Headspace Meditation App

A friend a free 30-day trial of Headspace this past January. I had just left my toxic workplace and the needed time to heal and recover from the negative and traumatic experience. Headspace uses short introductory animated video to explain what you’re about to do. I felt like it was a straightforward and different way to understand meditation than what I had heard before.

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I have been told many times by people that I should meditate, but I didn’t feel that I could sit quietly and not think about stuff. I experienced my first guided meditation during BossedUp Bootcamp with special guest Jessica Leigh Lyon. For the first time, I felt like I had been able to meditate, and she just had a very calm and excellent way of keeping me focused on taking a break. Two years later I have headspace, and again the guided meditations by this ex-monk with an accent are the best thing ever. I already told you about Peter my British Natural Reader, and Andy from Headspace is even better. He guides you through meditations and has been the most calming and relaxing voice. I was able to stick to it for three months or so, and then I fell off the wagon. I’m working now to get back into a routine that includes meditating every day.

What I can say is that in the short time that I used it I can tell I could tell that my brain was a lot calmer, more positive, and generally more content. I was struggling with trauma, but I felt like it was going to be okay and I would be able to get past that.

When I finally explored the entire app, I found the “sleep sounds” or white noise clips that you can play to help you fall asleep. They range from 10 minutes to an hour and successfully help me fall asleep faster every night.

There are a ton of meditation apps out there for a range of prices including free, so don’t feel like you have to use this one! Try a few out and find what works best for you. On Headspace, you eventually pay for your subscription, but I think it’s worth every penny. I always wait for a sale or Google coupons, so I was happy to find a discount code of 40% for a one-year subscription!

WHEW!

I know this is a ton of information but WELCOME TO MY LIFE! These are some of the tools I use every day to be able to function like a “normal” person. Luckily for me, I have found tools and resources to help me curtail the effects of permanent cognitive disabilities. And honestly, regardless of you having a disability or not, I think these are tools that can help you make your life easier.

Now, here’s a recap so you can find what you need more easily:

What tools and tricks do you use to make your life easier or practice boring self-care? Comment below and make everyone’s life easier!

Doris QuintanillaComment