{"id":1092,"date":"2019-11-24T21:59:46","date_gmt":"2019-11-25T02:59:46","guid":{"rendered":"https:\/\/web.asph.sc.edu\/aphasia\/?page_id=1092"},"modified":"2021-12-22T09:25:00","modified_gmt":"2021-12-22T14:25:00","slug":"care-partner-corner","status":"publish","type":"page","link":"https:\/\/web.asph.sc.edu\/aphasia\/care-partner-corner\/","title":{"rendered":"Care Partner Corner"},"content":{"rendered":"\t\t
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Featured Care Partner<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Care Partner Corner Features The Jett Family<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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By Tamela Jett
<\/strong><\/em>Imagine.\u00a0 Just for a moment.\u00a0 This moment.\u00a0 No preparation.\u00a0 You are instantly in a different country, a new one.\u00a0 One that speaks a different language from you.\u00a0 Your ability to communicate is limited.\u00a0 Conversations are going on around you, but you don\u2019t understand the language.\u00a0 You want to be a part of the conversation, but you don\u2019t speak the language.\u00a0 You want to read the words that are written around you, maybe it\u2019s even a lunch menu.\u00a0\u00a0 You can\u2019t read the language.\u00a0 You want to write something, anything with words, but you are unable to write in that language. This is the analogy I give when I describe James\u2019s aphasia.\u00a0 He has Global Aphasia.\u00a0 James has trouble understanding all of your words.\u00a0 He also has trouble finding the right words. \u00a0<\/p>

The irony in my analogy – James was in another country.\u00a0 He was working for Cisco Systems at the 2016 Olympic Games in Rio de Janeiro, Brazil as a project manager.\u00a0 He had just finished a thirty day stay, and after a short break at home, had returned for the Para Olympic Games.\u00a0 After suffering a few days from severe headaches James lost the ability to communicate.\u00a0 At first, James was diagnosed with encephalitis.\u00a0 It was a few days later that we learned James had two mini-strokes.\u00a0 I depended on his co-workers and the SOS nurses to keep me up to date. While hospitalized, our phone conversations consisted of James playing songs.\u00a0 Conversations were limited to guessing games of single words.\u00a0 There were so many unknowns with him being far away.\u00a0 Cisco was prepared to fly me to Brazil.\u00a0 An SOS nurse advised me to stay home and get things ready for James.\u00a0 That was smart advice. The struggle to get James back to the States is a story for another day, but it did include a doctor flying back to the States with James.\u00a0 \u00a0<\/p>

I had so much love and support from my family, friends, and coworkers from the moment I received the call.\u00a0 That life changing call.\u00a0 Each day I did my best to keep my emotions in check while in the classroom and at home around the children.\u00a0\u00a0 One of my confessions during those days before James came home is this, one night I sat on my bedroom floor and called my daddy.\u00a0 I told him that I just needed someone to talk to who wasn\u2019t going to cry. I knew the lives of my family would never be the same.\u00a0 I didn\u2019t want someone else telling me everything was going to be okay because at that moment, things weren\u2019t okay.\u00a0 I needed someone that would talk to me in real terms.\u00a0 I wanted truths to my new reality.\u00a0 My new normal.\u00a0<\/p>

When James started seeing the neurologists, they would keep the conversations quick and simple.\u00a0 I had to ask the questions in order to get answers that I really already knew from my own research, but was hoping didn\u2019t apply to James. \u00a0I just hoped \u2013 just needed- to hear that the area in James\u2019s brain that was damaged from the stroke, would one day heal and everything would go back to the way it was.\u00a0 \u00a0\u00a0That\u2019s not how aphasia works.\u00a0 Instead, I was told that he would \u201ckeep getting better.\u201d\u00a0 I knew this. It is true.\u00a0 It gets better.\u00a0 Not overnight but gradually.\u00a0<\/p>

Immediate therapy is critical.\u00a0 Those first 12 weeks.\u00a0 This is what I had been told and read.\u00a0 Over and Over.\u00a0 What James would learn in those first 12 weeks would be the bulk of his learning, but he would continue to relearn for the rest of his life.\u00a0 \u00a0Yet, James did not start speech therapy right away.\u00a0 My mind kept ticking off the days as I knew he was missing out on important relearning opportunities.\u00a0 A retired speech therapist from the school I taught took a class on aphasia.\u00a0 Just for me.\u00a0 Just for James.\u00a0 For us.\u00a0 She shared with me websites and apps.\u00a0 If James couldn\u2019t start speech right away, I was determined to start him on a program at home.\u00a0 I purchased the Tactus App.\u00a0 It was that experience that gave me a true picture of the severity of the damage from the strokes. \u00a0\u00a0It was also that app that began to help him improve his literacy skills.\u00a0 He was able to work on it at home, while I was at work.\u00a0 \u00a0\u00a0<\/p>

Life lessons.\u00a0 PSAs. These are lessons that I have learned that may help others.<\/p>

Finances. One of my stressors was the worry of our finances.\u00a0 With our youngest in middle school and our oldest in high school, how were we going to keep the lifestyle we were used to? I won\u2019t lie.\u00a0 I was worried about how we were going to be able to afford our home without his income. \u00a0James had taken out a long term disability insurance policy.\u00a0 This policy is in effect until he is 65 and supplements the Social Security Disability.\u00a0 Smart planning, James.\u00a0<\/p>

Body parts.\u00a0 Don\u2019t laugh.\u00a0 This is important.\u00a0 Some of the first vocabulary to teach your loved one with aphasia is body parts and the types of aches and pains.\u00a0 Practice those words with pictures or videos. Who would have thought that simple song, \u201cHeads, Shoulders, Knees, and Toes\u201d would be such an important song in communicating?\u00a0<\/p>

Passwords. Know your loved one\u2019s passwords that are important to your household.\u00a0 James\u2019s fingers had muscle memory.\u00a0 He was able to type passwords to his accounts.\u00a0\u00a0 His fingers moved fast across the keys.\u00a0 If he slowed down, he would not have been able to type the passwords.\u00a0 I would stand over his hands as he would retype often so I could get them written.\u00a0<\/p>

Support.\u00a0 It has been important for James to be able to connect with others with aphasia. We have been so thankful of all the support the USC Aphasia Lab has offered.\u00a0 It helps to know that we are not alone.\u00a0 If friends offer help, take it.\u00a0 As a caregiver, mental breaks are necessary. \u00a0\u00a0As a stroke survivor with aphasia, they need to be a part of the outside world.<\/p>

Mental Health Counselors.\u00a0 If I had it to do over, I would have taken my children to counseling.\u00a0 I watched them closely for behavioral changes.\u00a0 I worked hard to keep things as normal for them as possible.\u00a0 I could spend a few extra pages bragging about the great children James and I have raised.\u00a0 You wouldn\u2019t know that they have experienced a type of trauma in their lives (or so I thought).\u00a0 Three years after aphasia had become part of our daily lives, I watched our daughter practice a monologue she had written for a state high school theatrical competition about her experience.\u00a0 It hurt to watch. \u00a0<\/p>

Restaurants.\u00a0 Really?\u00a0 Restaurants.\u00a0 Oh, yes.\u00a0 My PSA is this \u2013 look at the menu BEFORE going to the restaurant or drive thru.\u00a0 Talk about it and pull up pictures.\u00a0 Make semi-decisions on food choices before setting out.\u00a0 You\u2019re welcome.<\/p>

Communication.\u00a0 Have you seen the coach that blows his whistle and makes the letter T sign with his hands?\u00a0 James and I don\u2019t use it as often as we could\/should, but when we use it, it is highly effective.\u00a0\u00a0 When one of us uses that symbol, we both stop the conversation, slow down, and start over.\u00a0 It is understood that the time out is not because we are angry, it is because we are confused by the conversation or what was said was misunderstood.<\/p>

One of the first phrases James began to say after his stroke was \u201cGod has a plan.\u201d\u00a0 He does.\u00a0 God has a plan for James and our family. I am amazed at how far James has come.\u00a0 It didn\u2019t all happen in the first 12 weeks, but James does do or say something that surprises me almost every day.\u00a0 We go to church.\u00a0 We take vacations and go on outings.\u00a0 James is involved in his hobbies, and I\u2019m involved in mine. Our children \u2013 we couldn\u2019t be more proud.\u00a0 Life with aphasia has created a new norm for us.\u00a0 Five years later, I am still calling it our new norm.\u00a0 \u00a0\u00a0Life with aphasia – we are okay. We are going to be okay.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Former Featured Care Partners<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\tMarsha Ryninger and her husband, Marcus<\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

\"\"<\/p>

Tell us your story. How did you become a caregiver\/support partner for someone\u00a0<\/strong>with<\/strong>\u00a0<\/strong>aphasia?<\/strong>\u00a0
<\/strong>On May 1, 2015 my husband had a stroke.\u00a0 I was out of town and when I arrived at the hospital several hours later he could not talk and his right side was paralyzed.\u00a0\u00a0 It was a dark and scary time.\u00a0 We didn\u2019t know what to expect.\u00a0<\/p>

What kind of changes took place in your lives as a result of your loved one having a stroke<\/strong>\u00a0and aphasia?<\/strong>\u00a0
There was an immediate need to contact his employer, arrange for disability, fill out forms, and contact friends and loved ones.\u00a0 This was hard to manage when your world is all of a sudden upside down and you are in a daze.\u00a0 Later changes involved me taking over all the finances, insurance matters, continuing to update friends and family and be sure my husband was taken care of and appointments were attended.\u00a0 More changes came when he was forced to retire because of his stroke and we started over by selling our house in Maryland and moving to South Carolina.\u00a0\u00a0<\/p>

What helped you and your loved one the most as you navigated your \u201cnew normal\u201d after a stroke?<\/strong>\u00a0
Prayer.\u00a0 And friends.\u00a0 People brought meals. \u00a0Friends helped clean the house.\u00a0 Neighbors helped and supported us.\u00a0 Getting into therapy as early as possible is key.\u00a0\u00a0<\/p>

What do you know now that you wished you had known right after your loved one had a<\/strong>\u00a0stroke and aphasia?<\/strong>\u00a0
To get into aggressive therapy ASAP at an inpatient rehab hospital – speech therapy, physical therapy and occupational therapy.\u00a0 That someone would have told us about Aphasia on day 1 or 2. We didn\u2019t even hear the word Aphasia until he was in outpatient therapy a month after his stroke.\u00a0\u00a0\u00a0<\/p>

How did you help other family members and friends understand aphasia and how it affected your loved one?\u00a0<\/strong>\u00a0
By explaining it was his speech that was affected, not his cognitive abilities.\u00a0 And to speak in a normal tone of voice, no need to yell.\u00a0 And even though he could not verbalize his thoughts, he knew what you were saying.<\/p>

What advice do you have for other\u00a0caregivers\/support partners of someone experiencing aphasia?\u00a0<\/strong>\u00a0
Listen.\u00a0 Be patient.\u00a0\u00a0 Let your loved one be involved in speaking to other people and let your loved one talk.<\/p>

Is there anything else you would like to share about your experience?<\/strong>\u00a0
Neither of us would have signed up for this, but it has been a growing and stretching experience for each of us in different ways.\u00a0\u00a0 It has drawn us closer to each other and to God.\u00a0 We have made some amazing friends and wouldn\u2019t trade this for anything.\u00a0\u00a0<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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\"\"<\/p>

We were tipped off our axis catapulted into another sphere to learn a language foreign to us beginning August 8, 2016 when my husband had an ischemic stroke.\u00a0\u00a0\u00a0Life as we knew it shattered!<\/p>

My wife role changed.\u00a0\u00a0Suddenly I became protector, caregiver, supporter, cheerleader for my love and life companion.\u00a0<\/p>

Focused on recovery we laid aside things that pulled us away from first priority of learning to live well within the circumstances of stroke survival.\u00a0 \u00a0\u00a0We have experienced continuing progress through these \u2018after years\u2019.\u00a0\u00a0It would have been encouraging to hear that the rate of forward progression may change, but it can continue beyond the one year \/eighteen-month time marker.\u00a0<\/p>

Sorting through the broken life, keeping salvageable parts while discarding others led us into a new adventure of educating family and friends of changes through conversations, text messages, sharing USC Aphasia Lab Facebook posts, and at first brief interactions that eventually led to good visits.\u00a0\u00a0<\/p>

Following the unfortunate norm some people shy away because they don\u2019t understand how to interact in the new lifescape\u00a0we are creating.\u00a0\u00a0However, because we researched, reached out and explored every available avenue for improvement and recovery we have gained a new ever growing circle of friends and professionals.\u00a0\u00a0We would encourage other stroke survivor families to reach out and learn from each other\u2019s experiences as you recreate the life you now have. Life is different, but it can still be rewarding.\u00a0<\/p>

Daily life can be very frustrating at times. I have learned to be present in the moment, give thanks for the Lord\u2019s mercies that are new every morning, and let the day flow with grace.\u00a0\u00a0Reminding myself to be patient I smile and with a heart filled with gratitude I thank my God for the privilege of sharing life together.\u00a0<\/p>

Van and Dee have been married 54 years and they look forward to sharing many more anniversaries together.\u00a0\"\u2764\"<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t<\/path><\/svg><\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\tAnn Shuler, mother of Megan Hurt<\/a>\n\t\t\t\t\t<\/div>\n\n\t\t\t\t\t

\"\"<\/p>

My daughter Megan, a 37-year old mother of two with a promising career, who was always involved in charitable events, and helping friends in need, had a stroke and resulting brain aneurysm while on vacation four hours from home.\u00a0 She was airlifted to a trauma hospital where she had surgery to coil the aneurysm and a craniotomy to remove a large blood clot.\u00a0 When I first saw her after the surgery I cried harder than I have ever cried in my life.\u00a0 I knew what to expect.\u00a0 My father had a very similar situation when Megan was a one-year old child.\u00a0 He lived for two years after his stroke, but was never able to talk to us again after his stroke.\u00a0 The inability to communicate was frustrating for him and heartbreaking for me.\u00a0 I fully expected Megan to follow suit.\u00a0 I know now the value of immediate and intense therapy.<\/p>

I immediately knew that I would quit my job and take care of her and her children.\u00a0 I would be her caregiver for as long as I could. No question.\u00a0 For four weeks I sat by her side in the hospital and worried what she was thinking as she lay there.\u00a0 Was she wondering where she was, what had happened and where her children were?\u00a0 She has since told me she didn\u2019t remember thinking anything. It now makes sense to me.\u00a0 She had no memory, so there was nothing to wonder or think about.<\/p>

As time passed, she began to show improvement.\u00a0 She had her feeding tube removed and could now eat.\u00a0 She also walked with a walker with help from her therapist, but still could not verbalize her words, which caused her to remain silent most of the time.\u00a0 When she was well enough, I had her transported to a rehab hospital in Columbia. The most important thing was for her to see her children and for her children to see her. I needed to be home and to go back to work.\u00a0\u00a0<\/p>

The intense therapy she received did wonders! When she was released from inpatient care, we made the trip from Chapin to Columbia several times a week for therapy as long as her insurance allowed outpatient coverage.\u00a0 It was there she met Ms. Mary. Ms. Mary gave us information about the Aphasia Lab at USC.\u00a0 I put it aside.\u00a0 I was so busy taking care of my house, her house, my grandchildren and working, I couldn\u2019t even think about it at that time.\u00a0\u00a0<\/p>

When outpatient therapy ended, I could tell Megan needed something more.\u00a0 She needed interaction.\u00a0 She had been such an \u201cinvolved\u201d person before this, that not doing anything would not work for her.\u00a0 She couldn\u2019t drive, and didn\u2019t feel comfortable enough to have friends over because of the aphasia.\u00a0 In fact, she would tell me to say no to anyone that wanted to come over.\u00a0 The aphasia kept her somewhat in isolation for quite a while.\u00a0 That is when I reached out to Dr. Spell.\u00a0 Megan is now gaining her confidence when talking to people, ordering in restaurants and being with her friends.\u00a0 She still does not like to be in a large group of people because of some hearing loss, but I get the feeling she is content.\u00a0 I see a much happier Megan.<\/p>

Before the stroke, whenever I needed to talk, or had something I didn\u2019t really know how to handle, Megan would always say \u201cI got this Mom\u201d.\u00a0 \u00a0Then the day came when it was my time to say said \u201cI got this Megan\u201d.\u00a0 \u00a0 \u00a0Over time my role as caregiver has evolved into mostly taking care of her finances, read and respond to her mail, emails, and phone calls.\u00a0 \u00a0I interact with schools, doctors and dentists for the family. I carry a Power of Attorney with me everywhere I go.\u00a0<\/p>

I believe that my patience and her impatience created the perfect combination to get to our \u201cnew normal\u201d.\u00a0 I would have taken care of everything for her as long as I had a breath, but her impatience set in and she now does most things on her own.\u00a0 I feel like my baby girl has grown up for a second time.<\/p><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Care Partner Resources<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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For a free Aphasia Caregiver Guide, go to the National Aphasia Association\u2019s (NAA) site to download your copy:\u00a0 <\/span><\/span>https:\/\/www.aphasia.org\/aphasia-resources\/aphasia-caregiver-guide\/<\/span><\/a>\u00a0<\/span><\/p>

In this guide, the NAA provides helpful information about aphasia, recovery and how you and your loved one can navigate all that goes with the recovery process.\u00a0 <\/span>Some of the suggested support organizations included in this guide are listed below.\u00a0 <\/span>Neither the NAA nor the University of South Carolina Aphasia Lab officially endorse any of these organizations, but all are potentially useful resources.<\/span>\u00a0<\/span><\/span><\/p>

Caregiver Action Network
<\/span><\/b>http:\/\/caregiveraction.org\/<\/span><\/a>
\u201cCaregiver Action Network is the nation\u2019s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.\u201d <\/span>\u00a0<\/span><\/p>

Caregiver Support Services
<\/span><\/b>http:\/\/caregiversupportservices.com\/<\/span><\/a>
\u201cCaregiver Support Services (CSS) is a non-profit organization with a 501(c) (3) tax-exempt status. CSS was founded in 1997 by Terrence and Eboni Green, a husband and wife team, after the couple recognized that most individuals who provide care for a loved one or client do not know where to start when it comes to gathering and coordinating resources and services.\u201d <\/span><\/p>

Family Caregiver Alliance
<\/span><\/b>https:\/\/www.caregiver.org\/<\/span><\/a>
\u201cFounded in the late 1970s, Family Caregiver Alliance is the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. FCA, as a public voice for caregivers, shines light on the challenges caregivers face daily and champions their cause through education, services, and advocacy. The services, education programs, and resources FCA provides are designed with caregivers\u2019 needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving.\u201d
<\/span><\/p>

National Alliance for Caregiving
<\/span><\/b>http:\/\/www.caregiving.org\/<\/span><\/a>
\u201cEstablished in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues.\u201d<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

Featured Care Partner Care Partner Corner Features The Jett Family By Tamela JettImagine.\u00a0 Just for a moment.\u00a0 This moment.\u00a0 No preparation.\u00a0 You are instantly in a different country, a new one.\u00a0 One that speaks a different language from you.\u00a0 Your ability to communicate is limited.\u00a0 Conversations are going on around you, but you don\u2019t understand […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-1092","page","type-page","status-publish","hentry"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/web.asph.sc.edu\/aphasia\/wp-json\/wp\/v2\/pages\/1092","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/web.asph.sc.edu\/aphasia\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/web.asph.sc.edu\/aphasia\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/web.asph.sc.edu\/aphasia\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/web.asph.sc.edu\/aphasia\/wp-json\/wp\/v2\/comments?post=1092"}],"version-history":[{"count":40,"href":"https:\/\/web.asph.sc.edu\/aphasia\/wp-json\/wp\/v2\/pages\/1092\/revisions"}],"predecessor-version":[{"id":1834,"href":"https:\/\/web.asph.sc.edu\/aphasia\/wp-json\/wp\/v2\/pages\/1092\/revisions\/1834"}],"wp:attachment":[{"href":"https:\/\/web.asph.sc.edu\/aphasia\/wp-json\/wp\/v2\/media?parent=1092"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}