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    Nicole Gibson

    An Autism Diagnosis Doesn't Change Who Your Child Is

    I wrangled the fine line of how much to share of our youngest daughter’s story, which unexpectedly has become part of our family’s story. Frankly, having a child with a disability in the family impacts the entire family. Something you don’t really realize until you actually experience it. We found out at 14 months our daughter had cerebral palsy — spastic hemiplegia, to be exact. Actually, we found out earlier than that, we just needed our doctor to officially confirm with MRI results. Later, we found out another part of our daughter’s story is that she also has ASD (autism spectrum disorder). News we already knew even before an official diagnosis. I think she was 2.5 or 3 when I hesitantly asked my husband, “Do you think she has autism?” And he quietly replied, “yes.” And that’s when it really became apparent that it was more than CP. But, I have realized along the way — these diagnoses do not define her, but they are part of who she is. And I don’t know why there is a stigma that comes with autism, among so many things like miscarriages and mental health. I never want her to feel shame for any part of who she is. I read over the evaluation results — pages and pages — and all the “red flags” they described made me quietly chuckle. They were describing some of the very things I found endearing about our sweet girl. I’m not saying it’s not hard — some days I feel we are a family in crisis — we are all trying to figure it out together… how to be in each others’ worlds. Being a family with a child with disabilities can feel isolating, stagnant, and like no one really understands. But I see amazing good things happening too. My older girls are learning patience, grace, empathy, compassion, and understanding. They are finding the joys that come with being inclusive. We are simply becoming better humans. I have come to experience a different level of pride that comes with raising a neurodivergent child — pride in seeing your child tackle and accomplish everyday things that we all take for granted. Pride so big it will make your heart swell and burst, and make you randomly cry while driving just thinking how far they have come. For families with children with disabilities who may not feel understood, we stand with you. We understand the complexities that come with going to run a simple errand or out on a family outing. Having to think ahead of the “what if’s” and whether or not your child will experience sensory overload or a frustration meltdown. We understand the mental toll and how exhausting the end of the day can feel. A diagnosis doesn’t change who they are — it just provides more answers and resources. And honestly, these last couple of years have redefined what it is to be “normal.” What even is “normal?” It doesn’t exist to me anymore. Our daughter is an extraordinary child. She has the sweetest smile and I have seen her amazing giggle bring a smile to the grumpiest of people. She is incredibly smart. She is obsessed with lawnmowers, fans, leaf blowers, and vacuums, and I freaking love that about her. She will tell you the same knock-knock joke over and over — each time with the same tenacious effort as if she were telling it for the first time. I am not sure why God thought us worthy of being her parents, but I am absolutely glad He did.

    Community Voices

    Tonight I light every candle

    <p>Tonight I light every candle</p>
    1 person is talking about this
    Keith Meldrum

    Finding the Humanity in Healthcare for Those With Chronic Pain

    Over the last six months or so, I have been thinking more and more about something I believe is fundamentally missing in the healthcare system: humanity. Merriam Webster defines humanity as “compassionate, sympathetic, or generous behavior or disposition: the quality or state of being humane.” It is my opinion that healthcare systems are lacking humanity. I don’t offer this to vilify individual health care providers but rather offer this in the context of healthcare systems overall. With that, in my numerous experiences, I have encountered individual health care providers that significantly lacked humanity and compassion, with most of my interactions ranging from adequate to excellent (the latter being the vast minority). Concerning healthcare systems, I appreciate that multiple factors impact this lack of humanity and while I am not able to offer an engineered solution to systemic healthcare change, if we don’t talk about this, we will never work to change it. I have had dozens of healthcare interactions over the past 35 years of living with persistent pain, as well as a recent and unrelated health diagnosis concerning a rare genetic disease. From this, I have experienced multiple interactions where I was not treated as a person, but solely as the current medical case in front of a health care provider. Often my presence felt like I was nothing more than the vessel that transported my medical condition and symptoms; there was never any consideration to how my health was affected by anything else in my life. The healthcare lens I was viewed through was often extremely narrow. This is not a new observation. Canadian physician William Osler, who practiced medicine in the latter part of the 19th century and early part of the 20th century spoke to this, noting that “it is much more important to know what sort of patient has a disease than what sort of disease a patient has.” The philosophy of patient-centered care was identified over 100 years ago by Dr. Osler, yet healthcare continues to struggle with an appropriate and effective patient-centered framework. In Osler’s time, the standard doctor-centered model considered doctors at an elevated status and “patients did not expect, nor were they expected, to actively take part in the history-taking process, as their health was totally in the hands of their physician.” This concept goes back even further than the 19th century. Voltaire, a French writer, historian and philosopher of the 18th century is quoted as saying that “doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing.” If we fast forward over 100 hundred years, this topic continues to be discussed in modern research. In 2011, Dr. Pankaj Gupta wrote an article about his personal experiences, noting that on his first day of medical school his father said to him “son, always remember that the secret to the care of the patient is in caring for the patient” and only a few years later he found himself referring to the patients he so wanted to serve “reduced to an excellent hemiplegia case or a great hernia case.” Medical schools focus on the biology of medicine while underestimating the importance of the social determinants of health; the problem with this is that misses the totality of people’s pain. Compassion in in healthcare is multi-faceted involving multiple dimensions, including ethical, professional, effective communication, human, spiritual and religious, and patient involvement. The focus of a 2019 paper titled “Compassionate Care in Healthcare Systems: A Systematic Review” concluded that “the improvement of compassionate care through education cannot remove completely the gap between theory and practice, because it seems that clinical environment and organizational values of healthcare system are the largest facilitating and inhibiting factors for filling this gap.” A fundamental principle of healthcare humanity is founded in healthcare provider and patient communication. A good article on history and importance of language in medicine is “Literature about medicine may be all that can save us” by Andrew Solomon and published in The Guardian. The author talks about the importance of language in medicine, noting that “the emerging field of narrative medicine proposes that patients can be treated correctly only when they can tell the story of their illness.” With this long-standing issue, what is a call to action? While I don’t profess to have answers to total healthcare system change, I believe we must focus on a few fundamental factors. We need to provide more healthcare provider training and education in the psychology of pain. I’m not advocating to train them all as psychologists, but rather integrate psychology education into medical doctor training and the training of other healthcare providers, including nurses, physiotherapists, massage therapists and other allied healthcare providers. I would suggest that this training needs to focus on people’s life purpose and meaning, as persistent pain often negatively affect both. Some research has led me to the concept of logotherapy, which is a “philosophy for the spiritually lost and an education for those who are confused. It offers support in the face of suffering and healing for the sick” examining “the physical, psychological, and spiritual (noological) aspects of a human being, and it can be seen through the expression of an individual’s functioning.” I find this concept very interesting as touches on what I feel are foundational to many people’s psychological concerns associated with their ongoing pain, specifically loss of self-identity. One’s self-identity erodes over time as they find themselves losing more of the person they were or the person they thought they could be due to the physical, emotional and social impacts of their pain. I also believe that narrative medicine should be integrated into all health care provider training. It is my understanding that there is no accepted definition for narrative medicine but Dr. Rita Charon, who is credited as originating the field of narrative medicine notes that it is “medicine practiced with narrative competence to recognize, absorb, interpret, and be moved by the stories of illness.” Narrative medicine is paramount concerning humanity in healthcare. People living with persistent pain are very much more than their pain and the only way to effectively explore this with healthcare providers is through meaningful conversations. By encouraging and supporting people to tell their stories, this provides “the kind of contextual richness that promotes and nourishes empathy, prompting a provider to switch from asking ‘How can I treat this disease?’ to ‘How can I help my patient?’” In the past, I have talked about faces of pain and that many people that live with persistent pain adopt different masks, depending on situations. This is not an effort to fool anyone, but more so to get by in day-to-day life including family, work and healthcare. Those living with long-term persistent pain learn to adopt a mask of pseudo-normalcy. Unfortunately, this can cause unintended consequences as it can appear to minimize one’s pain and its effects on their lives. It’s been reported that the relationship between facial expressions and reported pain levels “are at best moderate in healthy individuals undergoing acute pain tests and are generally weaker in patients with chronic pain. The neural systems underlying pain perception and nonverbal facial expression may therefore be largely dissociable.” I would offer that this is one of the reasons why healthcare needs to widen its lens when supporting people living with persistent pain as typical behaviors, such as facial expressions are often not an accurate reflection. While more study is required in this area, research has noted that “as predicted by the psychosocial model of chronic pain, our results also indicate that additional regulatory mechanisms are involved in facial expression in patients with chronic pain who may represent a socially driven adaptation in coping with the pathology.” Over the last 35 years of living with persistent pain, I have received technically excellent care in that the surgeons repaired the trauma and I have received some partially effective interventions. I would offer that some of these interactions have met the definition of therapeutic alliance, but most of my interactions have been reductionist. In all my healthcare interactions, I have never been asked how my pain has affected my life, yet I have been asked countless times to rate my pain on a scale of 1 to 10. People living with pain cannot be viewed only as a collection of their symptoms and their medical history. Healthcare must consider one’s total pain; pain that is “a person’s physical, psychological, social, spiritual, and practical struggles.” To best support people living with persistent pain, healthcare systems need to dismantle the hierarchical model of provider and patient and focus on humanity. This is A Path Forward.

    Community Voices

    I'm new here

    Hi, my name is Clint Irwin. I am a 33 year old male. I was born as a premature identical twin. I was diagnosed with Hydrocephalus at a few days old. Then Cerebral Palsy a little while later. I have Spastic hemiplegia. I was diagnosed with depression at seventeen due to underlying trauma from my childhood and then GAD a couple years ago. I hope this group can be a good support and help me gain new perspectives. Also, maybe help others too based on shared experiences. Thank you for reading.

    9 people are talking about this
    Community Voices

    The Pain of Seeking Pleasure

    <p>The Pain of Seeking Pleasure</p>

    How My Trauma Growing Up With Cerebral Palsy Led to C-PTSD

    Have you ever felt completely alone in the world, like you didn’t belong? Ever had that feeling of being misunderstood and constantly challenged by the society in which you live? Or being shunned and totally rejected by your parents, you know the ones who are supposed to love you unconditionally? Well, if you can relate in any way, you are not alone. Do you want to know what makes me different? I was born with cerebral palsy (right-side hemiplegia) and secondary scoliosis in the 1970s and attended a Special Needs School, up until the education laws in the U.K. were amended. Mainstream school was fraught with needless conflict. My parents were never accepting of my disability, as it appeared my being disabled had brought shame to the family. Invitations to family days out didn’t always extend as far as me, and I was made to stay home alone. I was also made to exercise every day without any time constraints, and as you can imagine, I absolutely hated it! Knowing this, my parents would also use exercise as a primary form of punishment. I could go on, but you get the picture — my childhood was dark. Not surprisingly, I’ve spent the majority of my adult life battling symptoms of complex PTSD. Who the f**k wants to be “normal,” and what does being “normal” even mean? Looking back on it now I’m like, give me (the child) a f**king break. It’s been an exhausting road with therapists who did nothing more than keep the repetition of trauma alive, all but one. I’ve not only managed to survive, but I’ve come out the other side. The strength it has taken to get here today is something that remains hidden. I realized a long time ago that my parents were never going to change, they are who they are and I needed to either accept that or walk away. I learned that focusing on our differences creates nothing more than a chain of separation, and I was not prepared to play party to that! I chose to stay, setting boundaries for my own self-preservation, and have managed to stick to them. From there, I’ve begun the journey of learning my own worth and my insight has enabled me to also help others along the way. It’s important that when we look in the mirror, we don’t see ourselves as being broken in any way, shape or form. We all hold a certain beauty within us and it just takes that one moment to see it for ourselves, unraveling all the misconceptions that have been placed upon us. I don’t blame my parents entirely for their downfalls, as society has a huge part to play in how disability is viewed and thus treated. For instance, it is extremely difficult for disabled children to recognize disability as a positive identity when they are continuously being bombarded with messages of negativity and devaluation on a day-to-day basis. “Will she get better?” “Is there a cure?” “Such a shame.” “Poor thing.” There is also the issue of being the only one in your world with a disability, which can make you feel even more alone, if that’s even possible. May we all stop to think about the impact of our words before choosing to speak.

    Community Voices

    A sense of belonging: battling CPTSD with Cerebral Palsy

    <p>A sense of belonging: battling CPTSD with <a href="https://themighty.com/topic/cerebral-palsy/?label=Cerebral Palsy" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6c00553f33fe98f700" data-name="Cerebral Palsy" title="Cerebral Palsy" target="_blank">Cerebral Palsy</a></p>
    3 people are talking about this
    Becca R.
    Becca R. @beccar

    How I Experience Anxiety With Cerebral Palsy

    Over the last year, I’ve learned the importance of telling my story, as it is the only way someone else can begin to understand what it is like to live with both cerebral palsy and mental illness. Knowing March is Cerebral Palsy Awareness Month, I want to highlight how everyday experiences are different for me due to my cerebral palsy. Because at one point or another in life, everyone experiences anxiety, I will focus on how my anxiety response differs from that of a “typical” person for this article. Everyone has his or her own idea of what anxiety looks and feels like for them. Some people have racing thoughts, and others, like me, have very physical symptoms even as my mind often goes blank from overload. Trying to describe my anxiety to people is difficult due to my different experiences because of my cerebral palsy. I have hemiplegia cerebral palsy, so basically the right half of my body is “normal,” and my left side is affected most due to the location of the brain damage. A few months back, my therapist encouraged me to find words to describe my anxiety to him, but I struggled. So, when given an art therapy assignment to make a worry doll, I crocheted Ares, the physical representation of my anxiety. This helped me immensely to find words I could then use to describe my experience. Each aspect of Ares represents a different manifestation of my anxiety. These specific elements are described below. One of the unique things about my anxiety, and a large reason I wanted to write this piece, is that the left half of my body reacts to anxiety in a completely different way than the right half. Weird, huh? While every part of my body feels different, having half of my body react completely differently than the other is a unique opportunity to be able to communicate the difference between the physical manifestation of anxiety for a “normal” body compared to that of a body experiencing spasticity. As anxiety takes over, I struggle with the ability to breathe and communicate with my voice. This is why Ares has no mouth. Fortunately, if given the opportunity, I often can still communicate to others (especially my therapist) through writing. Usually, thoughts are loud in my head, but I can’t get them out, which leads me to begin panicking and spiraling out of control. When I am unable to let this steam out in a healthy way, I often resort to self-harm, which gradually lowers the intensity of the storm in my head. I can imagine that many people experiencing intense anxiety eventually get drained of all their energy. Anxiety has such immense power over me sometimes that it feels like this black impending doom. The constant (false) warnings from my mind keep me on constant alert and I feel helpless and devoid of all hope. I feel as though I want to disappear. When I struggle to breathe, my entire body struggles to function. The left half of my body becomes completely stiff and feels heavy, like being stuck in concrete. My muscles tense up, and on my left side, they tense up tenfold. The constant muscle spasms are painful and awkward. I can’t move. This is perhaps the most unique manifestation of my anxiety due to my cerebral palsy. I recognize that, because everyone’s experience with anxiety is different, not every person experiencing spasticity will react to anxiety in the same way that I do. I am not surprised, however, that the left half of my body has a different anxiety response than the right half as spasticity is due to abnormal signaling within the brain and feelings of anxiety only add fuel to the fire. Physical conditions can and do affect how people experience emotions and other mental health conditions. Having the words now to describe my experience to my providers is invaluable because they’ve never had clients with cerebral palsy before and now they can see my experience better. I hope that this piece helps others find words to describe their anxiety to others because feeling known and heard and seen are some of the best feelings out there. The Explanation of Ares: Left side body – Grey – My left leg and arm get locked up, feel heavy, and unable to move, frozen like concrete due to constant muscle spasms. Right torso – Green – Green represents the aspects of my anxiety that are specific to the CP as green is the awareness color for CP. Red heart – My heart races and feels like it’s pounding outside of my chest. Black rope wrapped around my chest – When anxiety takes over, I am unable to breathe. Head – Black – Anxiety holds lots of power over me and causes fear. I also feel detached. Eyes – White – I feel isolated and like I’m helpless. Everything has been drained out of me, hence the lack of color. Mouth – does not exist – I am unable to speak when I am anxious. Hazard (!) on back of head – Yellow – The constant alerts my brain gives me that make me believe something is wrong. Right arm – Blue – Represents the sadness that I feel when I feel so powerless. Also, my right side is more physically relaxed than my left side. Right hand – Tan – My only method of communicating is through my right hand. Right leg – Yellow – The feelings of betrayal, and jealousy, how I feel when I compare myself to others, get let down, and feel like I am unsafe. Right foot – Black – Shows how the power of anxiety radiates through my whole body (head to feet).

    Community Voices

    Knowledge = Power

    <p>Knowledge = Power</p>
    Community Voices