Finding a way to communicate with AAC

In honor of March’s Disabilities Awareness Month, I would like to shed some light on how someone with a speech disability finds a way to communicate.  

It is a fundamental right for everyone to express themselves by using whatever tools they have. As they grow, they learn better ways to communicate, and their tools evolve.  

For people who have dysarthria (a difficulty in muscular control to make speech sounds, which can be due to the central nervous system not developing properly while the fetus is in the womb, a difficult birth, or an accident later in a person’s life).  We need to find a way to communicate that is appropriate. Using an AAC device (Augmentative and Alternative Communication device) is one way to communicate with others. Usually, a person from someone’s circle of family, friends, teachers, or a therapist will help you find a speech pathologist who knows about AAC. The speech pathologist will talk with you and your team to get a feel for how you communicate currently, and your dreams of how you want to communicate in the future. Then you will be evaluated to find the best communication device match for your needs, skills, and hopes for the future.    

So, now you have picked a communication device. What should you do next?  For this article, I will be addressing the new AAC user. If it hasn’t been offered, ask for a trial period with the communication device. Trial periods are good because they will give you a chance to take a communication device home and see if you will use it. During this time, play with the device. Learn where to find as many words or messages as you can. Talk to yourself with the device, and when you are ready, talk to the people you feel most comfortable talking to. Make the device your own by programming your favorite sayings, likes, jokes, and things about you that you want ready to say when you need them. If you get to the end of the trial, and think this isn’t the device for you and want to try another device- that’s ok. There Is nothing wrong with that, after all, you have to live with the device. 

Suppose you need your medical insurance to help pay for your communication device. That is okay! After all the paperwork has been submitted: you will likely have to wait three to six months until your communication device arrives.   When you finally have your communication device, go to town and make the device your own. Program all the phrases you think you will have to say repeatedly to new people or want to say often. Don’t do what I did, by leaving your communication device’s voice off. Leaving it on will help it to become a part of your normal self. While learning to use your device, please be patient and kind to yourself. It will take you time to master your device, but one day you will have a conversation with a sister or stranger, and suddenly you will see that all your work has paid off.

I had my lightbulb moment when I visited my sister on a beautiful weekend. She wanted to be outside working in her yard. She said I was welcome to sit outside and enjoy the lovely day, as long as I didn’t try to talk. If I talked to her, she would have to stop her work and pay attention to what I was saying.  I agreed to her terms. Before we went outside, I had my sister put the loaner device on my wheelchair. I said I needed to get my practice time in for the day. As it turned out my sister and I had a relaxed conversation with the aid of the communication device. My sister didn’t have to stop her yard work once to figure out a difficult word.  She was 100% on board with me getting a communication device after that amazing talk!  

If you are out in the community and a stranger wants to know, “What’s that thing that looks like a computer on your wheelchair?”  In my experience, strangers will walk away when I look down to type my reply to them. Our eye contact is lost, and they may become nervous standing there. They might even think I have returned to playing my game, and they will simply walk away. So, I have a comment like the following: “I am not ignoring you, I am working on a reply for you. So, stay with me if you can.”  it is also within your right to ask people to stop touching your communication device.  Simply say, “Please, don’t touch my AAC device. I wouldn’t touch your phone, so please give me the same courtesy.” 

One last thing. Never call yourself non-verbal. You are verbal if you can put together a sentence by writing, typing, or signing. If you experience 98% of people not understanding your natural voice, you are non-speaking.   In my way of thinking, nonverbal means having no way of communicating with the people around you. If you know someone who exhibits frequent behavior outbursts, they might benefit from seeing a speech pathologist.  Maybe there is an AAC device that could help them.

Why I Vote

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I want to express to you why I take the right to vote very personally. It always feels like some part of my daily life is in jeopardy when it’s time to vote.  If a measure is approved or fails, that could have a devastating impact on my life. Like for instance, a few years back, Oregon voted for an increase in rental properties, I had been happily living in an apartment with the help of a steady rotation of Direct Support people. It wasn’t long after that election that I was asked to choose between coping without DSPs at night, or moving into a house with another person who was in the same situation that I found myself in. I had to go with option B because being left alone most nights seemed like a disaster waiting to happen. Like for example, falling, hurting myself, and being stuck and in pain for hours until my next DSP came. Moving to the house meant losing some of my independence! 

Equally as important as the topics mentioned above, is keeping healthcare coverage for pre-existing conditions available to all people like me who live daily with disabilities. Healthcare is vital to everyone, I know. However, healthcare for people with disabilities is always being tossed around like a hot potato that no one agrees on how to prepare it. Typically, people who have disabilities don’t make near enough money to afford healthcare on our own; we wish we could. However, if we make over a certain amount of money, we will lose some crucial funding that makes it possible to have 24\7 DSP care. Still, there are other people with disabilities who cannot work at all, but everyone has a purpose for living in which there shouldn’t be a question over providing funding that would allow people to live safely and with all the services they need. After all, those of us who have disabilities couldn’t control being born with it. On the flip side, at some point in time, the average person can’t help getting into some accident or if a health issue springs up which gives them a disability for the rest of their life.  

I understand that it’s hard to vote for something you don’t fully grasp on the ballot!  It is tremendously hard for me to decipher the measures, too. That’s why I go to websites like the League of Women Voters (LWV) or Disability Rights of Oregon (DRO),  https://easyvotingguide.org. These websites are loaded with tons of helpful information, while not trying to push you to vote one way or the other. If you feel uncomfortable with having a family member, friend, or a DSP help you fill out your voting ballot; you can call your voters precinct and request that someone from that office come and assist you to vote. The precincts have tablets that have ballots on them, so if it’s easier for you to use a tablet rather than paper and pen, then ask for it. You can even vote online, but you need a printer linked to your computer so that you can print out your ballot, sign the envelope, and mail it.  

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As a woman I see the right to vote as a sacred act and my civil responsibility as a citizen of this nation. The Nineteenth Amendment, which was passed by Congress on June fourth, 1919, and rectified fourteen months later on August eighteenth, 1920, gave women the right to vote. Rectify means to adjust or to make right.  This is the one-hundredth anniversary of the Nineteenth Amendment. Our foremothers and forefathers worked tirelessly to make it possible for women to vote!  As a woman, and in honor of the nineteenth Amendment, I encourage every woman to vote so that we can preserve our precious right and honor to make our wishes heard!   

I want everyone to vote like our lives is depending on the outcome of the election because I believe every vote matters. 27% of people voted for our current president but only 55% of voters voted that year. Which means 45% of voters did not vote for one reason or another. 

Please join me in ensuring that our voices are heard through exercising our right to vote on November third. Make sure your ballot counts by mailing it at least a week early.

Soaring Authenticity

I had the great pleasure of seeing the movie, The Peanut Butter Falcon in the theater when it came out. However, due to reinjuring my hand (which I will address in an upcoming post), I’m just now able to get back to typing. I believe this very, very low budget movie is a great demonstration of how in just the right circumstance, two people can connect in random ways that form lifetime bonds. In my opinion, Zack Gottsagen, who plays Zak in the movie, and who actually has Down syndrome should have been nominated to win an Oscar for his outstanding acting! Instead, he made history at the Oscars by announcing the Nominees for the Live Action Short Films with his co-actor.  I thought it was a nice way to recognize Zack’s work on The Peanut Butter Falcon. 

Issuing a minor spoiler alert here!

The Peanut Butter Falcon had a lot of pertinent themes running through it. Zak was a man with Down syndrome in a nursing home where he knows he doesn’t belong. His parents most likely had grown too old to take care of him. That’s what happens a lot of the time; it’s that old’ circle of life thing.  Zak dreamed of running away and living out his dream of becoming a wrestler. He had a hero that he wanted to go see and hoped to get into wrestling school. However, the caregivers at the nursing home couldn’t see Zac’s vision. To Zac, the risk of following his dream was preferable to knowing that he was stuck living where he didn’t belong, despite hearing from his caregivers that his dream was silly and unrealistic in a dual effort of keeping Zac safe, and their job secure. When people with disabilities have the opportunity to do something that might potentially pose a level of risk, and the people in their life support them in the adventure, they are allowing that person Dignity of Risk.

Already labeled a flight risk, Zak with a little help from his much older roommate pried open the bars that were on his window. He escaped by stripping off his clothes and lathering up his body with oil. He squeezed out of the hole he made and began to walk away in nothing but his underwear. I kept wishing that he would have thought to have thrown at least his shoes out the window. However, he was on a mission, and getting away was his top priority. To be fair, the story takes place in the Deep South, where dressing less is better.  He managed to get to a pier without being noticed. He hides out in a boat under a tarp. Meanwhile, a man named Tyler is trying to run away from the trouble he got into. He gets in the boat and speeds off with Zak in it. The speeding boat makes Zak sick, and that’s how they meet.

Tyler isn’t happy with his stowaway. At the first chance, he parts ways with Zak. However, Tyler is drawn back just in time to rescue Zac from a bully who makes him jump into the river even though he clearly says he can’t swim. From then on, Tyler is with him all the way to meet his hero, because he can see Zac’s driving force and determination. On breaks from their journey, Tyler helps Zak to learn different skills like swimming, shooting at targets, and training to become a wrestler. Little by little, Tyler gives Zak clothing.

Zak had a friend in Eleanor, who worked at the nursing home. It’s a generally accepted concept that caregivers and those they care for shouldn’t form “bonded friendships.” Let me just plug-in here; humans that see and work around each other a lot tend to form friendships, that’s just how life works.  The home sends Eleanor out looking for him. She finally catches up with them. To keep her from taking him back to the home, Zac throws the keys to the van into the river. Eleanor joins the two in their trek, more so to keep a close eye on Zac. Eleanor and Tyler have several discussions on how Zac should live his life. Eleanor believes Zac, needed to live somewhere he would be looked after, while Tyler believes that wherever Zac lives, he should have a life that he liked living. Little by little, Zak tells her about his adventures and she sees how confident he has become.

Movie facts:

One of the most impressive aspects of the movie is how authentically Zac’s character was portrayed. Most everyone that he interacts with talked to him with respect and a natural ease; which most people with obvious disabilities rarely observe.  In fact, on July 30th, 2019, the Ruderman Family Foundation honored The Peanut butter Falcon feature film with Its Seal of Authentic Representation for accurate depictions of people with disabilities. The Ruderman Family foundation is a family business that recognizes that people with any disability should be included in society. They have done research and have learned how to respect everyone’s ability, or at least that’s what I gleaned from my quick study of the foundation. The Seal of Authentic Representation seems a big legitimate deal.

The movie was made specifically for Zack, when the directors of the film visited the camp he was at, and he stated that he was interested in becoming an actor. They incorporated his hopes and dreams into the movie.

When Tyler asked Zac, “what rule number one” was, Zack ad-libbed his reply “Party!“

I highly encourage people to check out The Peanut Butter Falcon.  This modern day version of Huckleberry Finn. You will fall love with the main characters. You will also enjoy the scenic background of the movie.

Emergency Preparedness For Red Sky, or Lack Of.

Emergency preparedness or lack of.

When the 2020 summer wildfire hit too close to my home, and my neighborhood was placed in an evacuation zone, everyone seemed to be holding their breath just waiting for the go command.    
  

We didn’t have a vehicle at that time, so we had to borrow a van from another group home that wasn’t in danger of being evacuated. The van was loaded with all our go bags and the supplies we needed and sat in the driveway all ready to take us somewhere safe if there was a need.   

When there is a lot of smoke in the air, the sky will turn an orangey red.

The whole situation was eerie and scary!  The sky was tinted ominously orange and red for days!  It felt like I was on a different planet. I have never lived in an evacuation zone!  It was so smoky that I couldn’t go outside for, well it felt like forever. I like to have the freedom to go outside and get some air when I don’t feel so good; fresh air just does wonders for my health and mood. Being trapped inside the house that I had spent most of the year in due to the pandemic; it felt extra oppressive, and like all the walls of the house were caving in on me!    

I heard a tip on the news. They said that if your house started filling up with smoke, place damp towels around the garage door and door seals that lead outside. When the house started to feel smoky, I instructed one of my DSPs to place wet towels along the bottom of the garage door. Not to toot my own horn, but the air quality improved greatly in the house.   

I didn’t think to contact my caseworker, and she didn’t reach out to me during this stressful time. I wish I had reached out to her!  Maybe she would have given me a list of emergency resources.  Maybe she would have had been the voice of reasoning that would have pushed the program manager to evacuate before level two became level three thereby avoiding a mad rush to leave our home. Being that we had a borrowed van, we had no idea how all three of our power chairs would fit in that van. I am sure that two power chairs would have fit in the van nicely. Getting that third power chair in would have taken some grunt work. I think it was quite possible that one of us would have had to leave their power chair behind.   

When we were raised to level two, be prepared to leave status, I thought why we don’t just leave right now!  However, the real question was, where would we go, and who would pay for the lodging?  All the hotels and motels were already packed with all the people who had been evacuated.  I believe the plan was to go to the agency’s art studio, which was in downtown Portland. It would have been cool for five minutes, and then uncomfortable the remaining of the time  
  

The real question hanging in the air was if we were evacuated and had to spend multiple nights somewhere, where would we sleep?   I share a house with someone who is prone to getting pressure sores if they stay in one position for too long. They sleep on a special air mattress that somehow adjusts the air pressure. I don’t know if any thought went into our sleeping arrangements if we were evacuated. Or perhaps we stayed put because of my house mate.   

I always have a bag of clothes packed and ready to go. My medicine should be easily snatched and packed at a moment’s notice.  My go bag wouldn’t feel complete without a couple of games and books.  I figure what better way to spend an anxious time than by playing games, and getting minds off anxious thoughts?  I also packed my communication device and work computer.  Who knew how long we would have been gone, and I wanted the ability to be productive workwise while I was away.  I don’t know how realistic that was considering a lot of set–up needs to happen to get my communication device and computer to work together. I needed the space to set it up, and a little prayer because I’ve never attempted to link my communication device to a laptop before.  If I had a computer savvy DSP working with me, I felt I could somehow get it to work. However, I had no idea which DSP would be with us.  

Thank goodness the call never came!  However, it is a good idea to have a go-bag ready to go in case you ever must flee your home in a hurry!  It would be good if we could all stay calm during these stressful times. Just remember to breathe slowly in and out whenever you start to feel overwhelmed and lean into whatever gives you your inner peace!  You will have a story to tell after you have made it through the storm.  

For more tips on preparing for emergencies, check out the OHSU University Center for Excellence in Developmental Disabilities website for the Emergency Preparedness for People with Disabilities Resource Hub: https://www.ohsu.edu/university-center-excellence-development-disability/emergency-preparedness-people-disabilities     

Here Is a Peek at What I Do!

Photo by Blaque X on Pexels.com

In my work as a Communication Consultant with the University Center for Excellence in Developmental Disabilities (UCEDD) at OSHU, I teach providers how to communicate with individuals with disabilities. This past May I had an awesome opportunity to co-teach a class of physician assistants with my boss. We spent two days with them. The first day we talked about what qualities we want to see in future doctors.  In the next class, we set up a series of role-plays where several actors and I had mock appointments with various reasons for the visits. For my “appointment,” I used my experience with carpal tunnel syndrome to make it more authentic.

It is important for the students to hear directly from someone like me, a woman with a disability who has experience talking with doctors. Right after each role-play, we had time to talk about what went well, and what could have gone better. I was able to offer advice from personal experience. It’s important for providers to have the real experience of communicating with people with disabilities, rather than just talking about it in a classroom or reading a textbook. Communication looks and feels different when you’re in the moment with someone like me who uses assistive and augmentative communication.

To give a picture of what this looks like: Before every appointment, I pre-program messages into my communication device about why I am there, as well as any questions I have for the provider. If for some reason they ask me a question that I don’t already have a programmed answer for, I have to type it out. This can take a while, up to 5 minutes or more. Learning to be comfortable with that silence is something you can only get by learning from a real person.

Alternatively, sometimes to speed up the conversation I will ask my Direct Support Professional (DSP) to translate for me. This brings its own issues; by taking this route, I risk the provider speaking only to my DSP instead of me. (However, in the first visit, I inform the provider that they should speak directly to me, with my DSP serving as a communication tool.) The students were able to experience all of the complexities involved when communicating with a device or with an assistant. By the end of the second day, I was exhausted but felt like I really put in a good day of work. I love the opportunity to teach!

Why Direct Support Professional Jobs Are Important

My DSP and I out for a walk.

March is Developmental Disabilities Month.  Keeping that in mind, I am highlighting the importance of Direct Support Professional(s) or DSPs in my life. In the past, I have referred to DSPs as my “personal assistants,” which is my favorite way to refer to them.  In my opinion, “personal assistant” sounds hipper and rolls easier off the tongue. However, the universal and widely recognized term for these wonderful people, who give so much of their time towards helping people with disabilities, will probably always be “caregivers.”

DSPs are of great value in my life because they act in many ways like my arms, hands, legs, feet, and sometimes voice. They help me take care of my most basic needs, such as cooking and then feeding me my meals.  Not forgetting that after the meal is done, they have to clean up the kitchen. However, that is just the beginning of a long list of tasks they help me with every day. Some tasks occur multiple times throughout their shift, like assisting me in the bathroom, which includes helping me transfer on and off of the toilet–plus the paperwork, and washing of hands that usually happens when someone uses the bathroom.  They help me bathe when I want to. They help me with dressing, brushing my hair, and pull it back so it is out of my face, but still looks nice. They help me brush my teeth, and floss. They must help me trim and file my fingernails; I simply can’t function well if my nails are jagged, torn, or too long!

DSPs clean my home, and wash/dry my clothes to my specific desires. They help me up when I fall.  DSPs help me get out of the house for some much needed recreation, mostly clothes/retell therapy.  Oh yeah, DSPs also help my housemate. It’s odd! He is more independent in that he can do more of his self-care, and entertainment preferences. However, he needs more help managing his health care.  Sometimes I feel his health needs become all consuming, and my needs are put aside for a bit. I’m sure he has had the same thoughts about me encroaching on times when he is waiting for some assistance.

DSPs help me take care of my cats. I have two, Donka and Helga.  I’ll ask my DSPs to feed the cats while I hang out in the kitchen, so that I feel a part of the process. Donka is a diluted calico, so she is very temperamental.  She doesn’t like my jerky body movements, and will not let me pet her. When Donka lets one of my DSPs love up on her, I’m thrilled she’s getting attention, but I’m openly jealous about it!  I want Donka’s beautiful green eyes gazing lovingly at me and not at the DSPs. I couldn’t handle being a mom to a human child. My heart would break a little every time I watched a DSP helping her/him do simple everyday tasks, things that a parent should help their child learn to do.

These eyes can melt hearts!

Ying and Yang!

 

DSPs help me communicate from time to time. Because they’re around me 8 hours most days, they learn my unique dialect.  Sometimes DSPs will help me make business phone calls and talk on my behalf. Other times they will assist me with interviews. For example, the other day I had a brief meeting about an issue that needed my input.  I wanted to devote the day to writing, and not talking to a stranger, so I had my DSP help translate for me. Did I take the easy way out? Yes, but sometimes I just have to use the tools that will save my energy for my writing.  My DSP did a fabulous job with translating, and keeping my stress level low. All a part of the job.

DSPs work long hours, with low pay, few raises, and few breaks. They are likely to be overworked, because when DSPs call out for a day, there are few other DSPs on call.  People end up working double shifts, because not enough DSPs are trained to work at different places. Just imagine relying on someone that you have never met before, walking into your home, and YOU needing them to help you in the bathroom.  It would be awkward, because before anything can happen, you first have explain what exactly you need help with. Now imagine that YOU are unable to communicate. It would be a stressful situation, wouldn’t it? While DSPs have a basic grip on their job, each individual they help has their unique personalities and ways of doing things. Both DSPs and individuals served certainly benefit from a little training.

DSPs have to help me when I’m sick, and in turn they have gotten me sick.  We’re in each other’s personal space a lot after all, so it’s bound to happen that we will share each other’s viral illnesses. We also share lots of laughs and fun times, too!  DSPs give me their time day in and day out, which allows my family and friends to lead their own lives.

Clearly, DSPs play an important role in my life. I am in control of my life, but I couldn’t be without the amazing support of my DSPs!   Please consider raising their wages!!!

What politicians should consider, at least every now and then, is if something life altering happened to you, can you imagine the scenario.  If that life altering circumstance left you no longer able to take care of your own needs, how would you want your life to look?  What support would you want in your life?  What support would you need?  Would you want a new person helping you frequently because the wages are not enough to support them or their family?    What if you had a child with a disability, what would you want their lives to be like?  Please consider that we have to rely on DSPs to maintain our health and safety, but they do so much more than that.  They become a person I can count on.  I hope you will consider raising wages for Direct Support Professionals.  Thank you for considering my request.

The Ganglion Cyst Was Not the Problem

I noticed a ganglion cyst on my functional hand around January of 2017.  It didn’t hurt much; only when I bumped it just right.  It just looked like I had a semi-squishy bubble on the palm of my hand that numerous people offered to pop, to which I kept discreetly refusing their kind willingness to solve my problem.

In November, everything changed.  I started waking up to a numb and tingling right hand and arm, with what felt like pin pricks, like when some part of your body is asleep until you wiggle, and the tingling fades away.  In my case, the numbness lasted a good part of the day!  I stopped doing my transfers, because I couldn’t feel the grab bars.  At least I had some good sense not to risk hurting myself. As the day wore on and the numbness eased up, I would help do more of my transfers. By night, when I went to bed, I was able to fully transfer myself onto my bed.

I was in pure agony!  More than once I declared I wanted to chop the whole arm off. Since I was in such misery, I went to lots of doctors’ appointments in search of answers.  I finally found a doctor that would remove the cyst.  However, he first sent me to be tested for carpel tunnel syndrome, because he was concerned I had pain when I shouldn’t have had any. The doctor reasoned, “Why not take care of both issues in one surgery?”

The test was a shocking experience, literally.  Involving electrodes and wires, and an eye-roller comedian of a doctor.   It was determined with one jolt; I indeed had carpel tunnel syndrome, but he had to finish the testing process. The doctor did confirm my suspicion that cold temperatures aggravated the carpel tunnel syndrome.  He also said something that I didn’t want to hear.  I likely have carpel tunnel in my left wrist, too.   He didn’t test the left wrist, because it wasn’t prescribed.  I will cross that bridge if it comes.

After receiving an official diagnoses’ of having carpel tunnel syndrome; it felt like everything went into hyper drive! The last few preoperative appointments flew by, and bang; I had a date scheduled for the surgery.  Exactly one week before the operation, it dawned on me that I wouldn’t have any way to communicate with new personal assistants (PA’s) should there arise an occasion where we needed fill in staff.  So, I quickly contacted my speech pathologist and told her my concern, and she set me up with an alphabet eye gaze board, and a stack of blank grids to fill in my own communication needs. She would have helped me more if I had given her more time.

Note to all AAC Users: If you are scheduled for an operation that will put you in a position where you cannot access your AAC device; make an appointment with your speech pathologist.  Come up with a sure way to get your thoughts out while you are healing!  My PA’s were not motivated to help me create a new communication system, since they mostly could understand my speech!

My hand before the surgery,

See the lump?

June 14^th dawned despite my misgivings.  The doctor’s confidence that he could help me, gave me hope.  Even so, I was second guessing needing this surgery all the while they were prepping me for the surgery. For every protest I had, my sister kept reminding me how miserable I was November through January, and that I did not want to go through another season in pain!  I couldn’t argue that point.

The operation went smoothly.  It lasted all of four minutes.  My sister didn’t even have time to settle down in the waiting room before they were calling her back.  I was relieved the surgical team saw no need for a breathing tube during the surgery.  My recovery time was so much easier without it.  I was on my way home within two hours.

Waking up after surgery.

 

One bandaged hand.

Home and obviously in pain!

Having surgery meant for a period of three to four weeks I could not use my right hand, the hand I do everything with.  I could not type, wipe my nose or mouth, or use the TV remote. I could not readjust my left hand/arm when it contorted and cramped up, which totally was a pain, because sometimes I asked my PA’s to help uncurl my arm three or more times an hour depending on how agitated or uncomfortable I was. A few times, the PA would be busy helping my housemate; I just couldn’t take the pain in my left arm anymore, and I had to wrangle it back into submission!  Each time I did my “readjusting” I would imagine my stitches busting open, and blood oozing from the bandage, but in reality, such a thing never happened. The mind picture stopped me from doing this stunt often.  Instead, I would try to breathe through the pain.  It totally sucked not being able to pick at my nose.  Come-on, everyone does it!

Lets get the stink off already!

Bandage covered!

I needed a way to get my PA’s attention when I was in bed, or when I needed to get up.  A few years back I acquired a doorbell when I was sick, but it was useless in bed because there was never a good place to put it.  The night of my operation, I was in no mood to be messing around with the crucial placement of the doorbell.  In a flash of inspiration, I had my PA tape the doorbell on one of my throw pillows, and then I had her place the bell on my body pillow which I  keep as a barrier between me and the wall.  Necessity is the mother of invention, and my bell system worked for me.

With lots of time on my hands, pardon the pun, Hulu and Netflix were my best friends during my recovery period.  With their help I binged watched shows like; New Girl, Schitt’s Creek, The Good Place, and an assortment of my favorite movies.  Three or four episodes would run before stopping, and it was often timed where I had a meal or had to use the loo.  Miraculously, I was able to zone out, and gave my hand the rest it needed to heal.

First time seeing the scars!

Hand wigging out after being freed.

I got a little peeved when my physical therapist was shocked to find out I had not been using my hand after the stitches had healed.  I wanted to reply, “At my last session you said I shouldn’t use it.  Make up your mind already!”  At the same moment, I was mentally bringing my palm up to my forehead, thinking of course the stitches have healed!  You don’t have to be fiercely protective of your hand anymore!

If I hadn’t had an actual concern that the ganglion cyst was causing me pain, and therefore causing damage, I probably wouldn’t have sought out medical help. I thought the cyst was the cause of my pain.  When it was really the carpel tunnel that was causing all the pain.  Over six months later, and into winter nonetheless, my right hand and arm are relatively pain free.  Somehow I thought my having cerebral palsy would somehow work against the effectiveness of the operation.  I am happy to report that so far, it has not!

 

My Experiences with School Aides

I was asked awhile back to write about my experiences with school Aides, so  here is my viewpoint.

My school was 17 miles away from home.  A thirty-five minute drive in my family’s car. However, by school bus it was close to a two hour ride one way!

I went to a school called Holiday Center. The school was created for children who had physical disabilities.  The grades ranged from kindergarten on up to the sixth grade.  Normal classwork would be conducted; while individual students would be pulled out of class, and taken to therapy sessions. The therapies included Occupational Therapy(OT), Physical Education(PE), Physical Therapy(PT), and Speech. I loved PE because it was fun and games with my peers, plus I loved the teacher. However, the other three therapies I gradually grew to resent, because I didn’t much like keeping an eye on the clock so that I could leave a interesting class, to go to a labor intensive therapy session. I was always torn between classwork and therapies; both in which would eventually lend me skills I would need in the future!

Holiday was attached to a grade school. of which we had the use of it’s library, gym, and stage for Holiday’s school productions, (my favorite times of year).  Eventually, my class moved into  the school, so we could fully experience be emerged with other “normal” peers.

I haven’t gotten to the main focus of this post yet, which are school aides.  School aides were the backbone of Holiday. They were the teachers extra set of hands.  They kept the schedule running smoothly. They were also there to assist the students with their personal needs.  Such as helping with bathroom breaks, with lunch, helping us pick out library books, and goodness knows what else.

They became invested in their students lives. Often becoming a sounding board to their students . Once when I was convinced my parents were crazy for insisting I needed to get braces to straighten out my teeth. My school aide picked up something was troubling me, and got me talking. By the end of our conversation she helped me to see the benefits of the torture coming my way, and even how lucky I was to have parents who saw that I needed braces!  To this day, I’m grateful for the aides I had at Holiday Center, for they encouraged me every step of the way.

Maybe at times the school aids were a little too intrusive.  They were in consent communication with our parents.  They knew the contents in our backpacks, so no surprises ever could occur.  Above all that, I was convinced I was an old soul at heart, therefore I preferred talking to my aides and teachers, rather then most of my peers.  This lead to a social awkwardness I still struggle with today!

My biggest goal while at Holiday was to be “mainstreamed” into my neighborhood school system.  This dream only happened after I agreed to stay at Holiday an extra year; so I could be prolific at using the communication device that was determined I absolutely needed to be successful at my new school.  Which, in all honesty, I was nowhere close to being great at.  The device looked like a  calculator.  Every word, phrase, and letter had a three digit code I had to memorize.  It had a male robotic voice, that didn’t jive with me at all.  What was it’s greatest downfall?  It’s lack to store my own phrases, and school work.  If it had those two capabilities, I could have made it work.

My graduation speech should have tipped me off that the device wasn’t well matched to my needs.  I spent about two hours programming the speech into  my communication device.  I was keenly aware of  the fact that if the device were to be.turned off, the speech would be lost.  There wasn’t a lot happening in school that day, so I decided I needed a breath of fresh air, and went outside.  When I wanted back in; I waved  at someone to let me in, and that’s when my hand fell ceremoniously on the device’s on/off switch.  I swore my first blue streak, and ran to my speech therapist who quickly helped restore my speech just in time.

Interesting enough, my two school districts feuded over who had the rights to my device.   Mom calmly but  firmly said, “You promised my daughter she could go to her neighborhood school, if she had this device. She is taking it with her.  We will gladly return the device when she’s no longer using it!”  The battle was dropped.

After my first day at my new school, the second I got off of my quickest bus ride ever; I burst  into  tears.  It was the hardest day of my life!  I had what I wanted, going to the same school my siblings went to, having some of of teachers say, “Say, are  you so and so’s kid sister?”  I literately knew no one.  I endured stares, and awkward moments,  while finding all my classes before the horrid bell rang.  I wanted to give up, and go back to Holiday where everybody knew me, and felt like  family.  However, I could not give up with just one day under my belt!

I only had  an aide a couple of times during the day.  Both were in modified study halls, plus scheduled bathroom breaks.  The rest of the time, I relied on my peers.  They helped me with  getting my books  out of my backpack and to the right pages, taking notes for me, and handing in homework.  They even helped  feed me my lunches.  Knowing myself the way I do, I would have stopped eating the moment my classmates stopped.

I didn’t have a female version of Kenneth “Speechless” hanging around constantly to interfere with peer bonding, and that was priceless, and I wouldn’t change it for the world!  However, sometimes I felt like a burden to my peers.  They didn’t walk into school starting 7th grade thinking they would be volunteering to help me at different times during the next six years.  However, I’m so grateful some my peers were willing to help me!  Go, Canby Cougars of 1988!  You rocked!

P,S.  In my Junior year, I ended up giving the communication device back to Holiday Center.  Instead I opted for a laptop computer, and a little device that typed  out ticker-tape messages.  Both devices served me about eight, years until I begrudgingly admitted that technology had improved enough that I felt I could be successful at using.

Health Care: It Should Mean Something To You!

What does health care mean to me?  It means quality of life!  It means being able to go to the doctor and dentist when I need to. It means living in the home I do, and being able to have 22\7 personal assistant care. It means being able receive the tools such as my power chair,  communication device, eye glasses, strategically placed grab bars around the house,  shower chair, and manual wheelchair; all of these things make me as  independent as I am.

It was clear I had a disability from the traumatic birth I went through. The real question of just how disabled I was had to wait and be seen until I grew. However, the doctor told my parents that there was an institution called Fairview that I could go to. My parents didn’t give it a thought, and kept me at home.  All through my childhood my mom was able to get me the help I needed when I needed it. A contact of mom’s got me seen at Shriner’s hospital, Shriner’s sent me to Child Development and Rehabilitation Center, where I received my first physical, occupational, and speech therapies. I was born the year after the Higher Education Act of 1965, and that ensured that I received “financial assistance” for the special equipment I needed to get my education.

I believe that without my family’s support and the timely medical care I received early in my life: I wouldn’t be the person I am today!  I also know that if people are not personally disabled or are attached to a person whom who is living with a disability,  they may  not understand the importance of specialized health care for individuals who have disabilities. Be aware, be involved, be an advocate!

 

Praise For “Speechless”.

I should have sang this past Fall’s new show on    the network ABC:   ‘Speechless’  way before now. However, the episode I recently watched,  entitled “D-I- ING” had me laughing so hard I was crying and my belly hurt from being in such stitches. I just can’t stay quite any longer!

First off, “Speechless” is a half hour comedy about a family. There’s the parents and three kids. The oldest kid JJ has CP.  The Premier kicked off with the mom announcing to the kids that they were moving to another in a long line of schools. This school was going to be different in the fact that JJ would have a full-time aide who would read his communication board for him, and thus he’d have audible  voice. The thought that ran through my mind was, why didn’t JJ have a communication device that had voice out-put?   I quickly reflected that it’s up to the individual’s preference as to how they want to communicate, and maybe JJ feels more connected and communicates faster when people read his board with him pointing to the words he wants with his laser pointer  Not to mention the fact that JJ uses the laser pointer in numerous ways; he’d be lost without it!

JJ’s family seems over-the-top; especially Mia, his mom.  However, she’s just passionately fighting for the rights and services her child needs?  Parents who have children with disabilities should be praised for knowing their child’s  needs.  Not have the school administrators cringe at the sight of caring parents marching down their halls in determination.

Take for instance, on the kids first day at the new school, Mia was disappointed to find the only entrance into the school JJ could use was a ramp at the back of the school.  Oh, how I can relate; I’ve entered plenty of buildings through egress of back door ramps made solely for the ease of taking  out garbage.  Just after all three of her kids entered the school via the “back door”,  Mia who was complaining her son had to enter school via the garbage ramp, seized the perfect opportunity to teach the principal a lesson.  Out came a janitor (Kenneth) with a cart that held half landscaping supplies and  garbage.  The crazed mom played, Trash Or Person with the principal.  First she pretended to shake Steven Hawking’s hand, then she preceded by holding up objects and asking if they were trash or person.  When Mia asked the principal if she was trash or a person, she was so overwhelmed by Mia, that for a second she didn’t know how to answer.

Things I like about the show;

When JJ’s new aide turns out to not be the “right fit”.  JJ finds someone he likes, gives him an impromptu interview,  and hires him.  His choice of an aide was accepted by everyone involved; much to the chagrin of Mia, who got off on the wrong foot with Kenneth.

I love that JJ’s siblings are always around and willing to read his board for him.  Also, when his ill-fitted aide questions JJ’s input in his family’s conversation.  His dad off-offhandedly took a second to correct her, that JJ’s comments were wanted and appreciated.

Things I have trouble believing about the show:

I never had my aide come home with me after school or on the weekends, except on rare occasions for some milestone party. The fact that JJ’s school aide helps out at the family’s home is pure luxurious fiction on the shows part!

JJ’s family always seem to be around to read his comm board. My family didn’t do that. However, often when I was totally immersed in typing a school report, or my own personal journal, I would be startled to feel hot breath on my neck as members of my family read my words over my shoulders.

JJ’s family uses his disability as an excuse to act slovenly.  I don’t understand that, at all! My family never did that!

It’s a half hour show, geared for fast pace, funny story lines.  Sometimes it takes me a whole half hour to communicate a thought.  JJ’s rate of .communication is way too fast for someone who accesses his communication device via an inferred laser head-pointer.

However, everyone needs to understand this point; every episode of Speechless has two or more nuggets of truth in them.

In the episode, “D-I- ING”, the family is shopping at a new store for them because its the only store that carries an ingredient that  Ray (JJ’s brother) needs for a graded school project.   Well, as it turns out Ray accuses Mia of dinging the passenger door to the car she parked by, and they’re  thus occupied bickering over that.  Jimmy (JJ’s dad) sets out to prove to Dylan (JJ’s sister) that he can deliver on a promise, and the pair team  up in that quest.  JJ is left alone to gather his portion of the shopping list.

During his time in the store, a number of people asked JJ if he had a license to drive his power chair. Right after the first person asked JJ that question Dylan bet JJ on how many people would ask that same question.  The only person who caught JJ’s eye-roll after asking that question was the guy behind the meat counter.  Then he acknowledges his fop aw, and JJ accepts his apology.  The next second meat counter guy witnesses someone else’s greater mistake.  A fellow shopper, engrossed in talking on his phone, absentmindedly uses JJ’s chair controller to move JJ out of his way.

JJ who suddenly finds the offending shopper’s grocery list in his lap, schemes to be a real obstacle to the shopper. JJ’s antics are totally unrealistic at times, but non-the-less I was right there rooting JJ on. Where was Kenneth in all the mayhem the family was causing? He was there managing to save the day.  Pun intended!  Just watch the show already!