Tag Archives: social acceptance.

Featured Spotlight: TeenCP in 2015!

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Hi All,

I do hope your November is off to a good start! I’d like to give a warm thank you to James Randolph of Artiscend, a digital archive spotlighting inspiring stories from artists, musicians & people from all over. This article below is a lovely profile piece on me & TeenCP. I really appreciate how genuine these words come across, especially as they are so personal to me & everyone who has been alongside my internet journey. The power of voice proves to be yet another way to extend our reach beyond amazement!

What is Artiscend?

“Our job is to be the avenue for the talented craftsmen and artists who want to see their work appropriately spotlighted and for the patrons of those artists to have a place to express their appreciation.We always feel like those who deserve it most are those who are appreciated least and we hope to help change that. Musicians can receive direct support from their fans,  Application designers and game developers will have a platform to receive credit and contribution from the technology they’ve created and inspired. Wherever the artists are changing the world, we’ll be there to help them realize their vision.”

Click me: >>>Artiscend Article on TeenCP

Hope you enjoy it, I know I did! 🙂

-Katy

National Siblings Day: TeenCP

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Hi All,

I hope you are all enjoying your week so far, in commemoration of National Sibling Day (earlier this week) I am going to talk about having siblings and what that means to me and CP. I have an identical twin sister, Sara, an older brother, Matt, and a younger sister, Daisy. None of whom have CP—but all of whom fully understand what growing up with CP has been like, just from an outer perspective!

I truly believe that my upbringing as a child has allowed me to be who I am today. With the help of my sibling, my confidence went unshaken, and my fear of judgment drifted away. With the help of my siblings, I was happy and my dream of normalcy came true. However, as children, none of us really knew what CP was. We were too busy playing at our neighborhood park or teaching each other how to ride a bike so we could all keep up with the other kids. I didn’t learn how to ride a bike almost three years later than my twin! But at the time, we all just accepted the fact that “Katy just takes longer to do things with her legs.” It was never something I mentally let slow me down, because my siblings never treated me any differently. As far as I remember they knew that I was slower and less coordinated, but it was just a fact and nothing beyond that at the time. I am so grateful for that, in hindsight. Even up into high school, my siblings and I always did things together and my CP was never an issue that separated me, from them. Whether it was playing soccer or just hanging out and riding our bikes to the beach—I did everything just the same, but at a different pace and that was easily understood by all. I am lucky that my family and I are so close that we have been able to grow up with this special bond, and I think that my CP has made us closer, in a way. Sara and my brother, Matt always looked out for me; they were my “protectors” at school and when we were running around being kids.

In an interview with a UCI college student, Irene Sanchez, Sara remembers: “When I think about growing up with my sister Katy, I think back to us always being together and riding our bikes to school or finding each other when we were apart because I always felt the need to be with her and to make sure she was ok.”

I always felt that, and still do. Whenever we cross a street Sara still makes sure I am beside her, just like she did when we were little on the school bus every morning! I remember one time, my brother Matt saved me from falling off the side of a moving escalator! Whenever we went on family hikes he always stayed behind me in case he had to grab my arm, as I often stumbled around on the loose gravel. I always felt that Daisy is patient with my CP and she understands how it effects me, both physically and emotionally. It is that kind of understanding and protection that I have been blessed with, and the fact that I never had to ask for it makes me all the more thankful for my amazing siblings. To this day, Sara, Matt, Daisy, and I remain the best of friends and we will always be loyal to one another as we continue to grow up and create our separate lives. Needless to say we all love each other very much and are all a part of one another in so many ways.  That is what my siblings mean to me and my CP as I have grown from a small child into the person I am today!

Summer…

Is almost over! Well that flew by, didn’t it? Well Hello TeenCP!

After a nice couple weeks in Michigan with my family, I feel ready to start mentally preparing for the semester ahead. Moving back to the dorms, looking for a new job, and starting school again takes a lot of preparation! I have to use my last two weeks at home productively but still squeeze out that last bit of summer that I can.

Today I really feel the need to talk about the show that I was on, “Live Life, and Win!” if that is okay with you guys. For those of you who don’t know, the show features really outstanding teens and young adults who do something incredible or advocate for a cause that they are passionate about. Having talked with so many new people with/without CP over the past couple of weeks after the show aired has made me realize that we all have a common goal: to be accepted; to feel “normal” loved, supported, and encouraged as we go about our daily lives. And personally, my journey with CP and having this blog had allowed me to see that it was MYSELF who was in need of performing the ACT of acceptance. I struggled– and still do– with accepting my CP because I was so afraid of what every one else thought of me, and my legs, my limp…that I never let it show in social situations. This was all an internal struggle that I notice more clearly now, after having watched myself on television. I tend to put on a strong front so people don’t see that I am insecure about the way I walk. I think it’s what I learned to do in my teen years when we all start to become conscious of ourselves and of others. In the same token, I do my best to not dwell on my CP because I know I won’t be a happy individual if I let my flaws and weak points consume me. People are wrapped up on their own lives; at the end of the day they really aren’t going to notice or judge me about my CP. So every day, I aim to find a balance–a mindset that makes me happy, keeps me sane, confident and able to move forward in my life. I hope we can all learn to do so as we live our lives.

Having watched myself on tv, I was very emotional about it because it was surreal and much more overwhelming that I imagined it being. The show focused solely on me having Cerebral Palsy so much to the point that I felt self conscious about it in the days following–I keep thinking to myself, “Do I really walk that bad?” Yuck! But at the same time I felt SO proud. Who would’ve thought that I would ever be on tv just talking about my life and what I do. I’m only 20 and just doin’ my thing in college with my family and friends by my side. So yeah, it was an interesting experience. I didn’t particularly enjoy watching myself on camera, but who does? It just gives me yet another medium to be able to reflect upon myself where I can learn to grow and become who I am meant to become!

Thanks for hearing me out, I’ve been thinking about all of this for the past week or so and couldn’t quite get myself to put it into words.

Guest post soon to come! Sometimes I am not able to return all of your wonderful emails right away…. but if I may, I’d like to make a request. I’d like to have only teens with cerebral palsy email me about guest blogging. I having decided this because my aim for TeenCP is to provide a place where young teens/adults can come and support each other through sharing their experiences. I appreciate everyone who is willing to share their personal story about their teen years with CP, but I think it will make it just that more special if we get a good amount of teens on board! Thank you for all of your support and openness guys, I love it. What a great circle we have online here!

Happy last days of August–

-Katy

a Looking Glass into Cerebral Palsy

Hey there!

So I have been feeling like I am much more uneducated on CP than I should be, considering Im affected by it each minute I live! So here’s the deal, I did a little research and here is what I came up with, there are four types of  Cerebral Palsy…I let wikipedia break it down for ya :p I feel like they do a good job of encompassing all the FAQ’s. Hopefully it isn’t too much to take in, feel free to just skim over it…I bolded a few parts that caught my attention, as it applies to some commonalities of CP. I have a few more info to the right colums under “resources” that you maybe want to check out as well. I just thought you might want to go on here to read up on CP, as some other webs are a bit intimidating and hard to sort out. I’m not sure if you have already done any research on your own, nevertheless, this is here… who knows, maybe researching is how you came across my TCP web! 🙂

CEREBRAL PALSY

Spastic cerebral palsy is by far the most common type, occurring in 70% to 80% of all cases. Moreover, spastic CP accompanies one of the other types in 30% of all cases. People with this type are hypertonic and have a neuromuscular condition stemming from damage to the corticospinal tract or the motor cortex that affects the nervous system’s ability to receive gamma amino butyric acid in the area(s) affected by the disability. Spastic CP is further classified by topography dependent on the region of the body affected; these include:

  • Spastic hemiplegia (one side being affected). Generally, injury to muscle-nerves controlled by the brain’s left side will cause a right body deficit, and vice versa. Typically, people that have spastic hemiplegia are the most ambulatory, although they generally have dynamic equinus on the affected side and are primarily prescribed ankle-foot orthoses to prevent said equinus.[11] —-This is the definition of my case!
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  • Spastic diplegia (the lower extremities are affected with little to no upper-body spasticity). The most common form of the spastic forms. Most people with spastic diplegia are fully ambulatory and have a scissors gait. Flexed knees and hips to varying degrees are common. Hip problems, dislocations, and in three-quarters of spastic diplegics, also strabismus (crossed eyes), can be present as well. In addition, these individuals are often nearsighted. The intelligence of a person with spastic diplegia is unaffected by the condition.
  • Spastic tetraplegia (all four limbs affected equally). People with spastic quadriplegia are the least likely to be able to walk, or if they can, to want to walk, because their muscles are too tight and it is too much effort to do so. Some children with quadriplegia also have hemiparetic tremors, an uncontrollable shaking that affects the limbs on one side of the body and impairs normal movement.

Occasionally, terms such as monoplegia, paraplegia, triplegia, and pentaplegia may also be used to refer to specific manifestations of the spasticity.

Ataxia (ICD-10 G80.4) type symptoms can be caused by damage to the cerebellum. The forms of ataxia are less common types of cerebral palsy, occurring in at most 10% of all cases. Some of these individuals have hypotonia and tremors. Motor skills such as writing, typing, or using scissors might be affected, as well as balance, especially while walking. It is common for individuals to have difficulty with visual and/or auditory processing.

Athetoid or dyskinetic is mixed muscle tone — People with athetoid CP have trouble holding themselves in an upright, steady position for sitting or walking, and often show involuntary motions. For some people with athetoid CP, it takes a lot of work and concentration to get their hand to a certain spot (like scratching their nose or reaching for a cup). Because of their mixed tone and trouble keeping a position, they may not be able to hold onto objects (such as a toothbrush or pencil). About one quarter of all people with CP have athetoid CP. The damage occurs to the extrapyramidal motor system and/or pyramidal tract and to the basal ganglia. It occurs in 10% to 20% percent of all cases. In newborn infants, high bilirubin levels in the blood, if left untreated, can lead to brain damage in certain areas (kernicterus). This may also lead to athetoid cerebral palsy.

People with hypotonic CP appear limp and can move only a little or can’t move at all.

***I feel they don’t touch on social development very much… in my opinion, I believe it is one of any parents biggest worries to see their child be socially inept. With that said, it is essential to help integrate children with CP into “normal” activities with other children, in hopes that they will feel as equally accepted, loved, and respected, regardless of their disability or insecurity. However, I do realize that there are serveral more severe cases of CP where social situations cannot be implemented in one’s therapy, or develpment program and growth, due to the severity of his or her CP. So, this could mean the simplest of activities toward progression– from learning how to tie their own shoes, to riding a bike, or painting a picture with their classmates. Anything that creates a healthy source of interaction among children will help the child feel important, and included. Yet in every human being’s life there comes a time when they just need to be told that they are loved and befriended.  Support is HUGE in the development of a child–with or without CP. A child needs nothing more than the love and acceptance of their parents, family, and peers. If you give them that– dont fret, they will grow into the beautiful human beings you always hoped they’d be. There will be times of frustration, confusion, and hopelessness, but you will get through those hardships. See that you really make an attempt to understand that person around you with CP–whether they be your child, friend, brother or mother, and know that that is all you can do. That is all they want. To be understood.***

  • Symptoms

All types of CP are characterized by abnormal muscle tone (i.e. slouching over while sitting), reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

Babies born with severe CP often have an irregular posture; their bodies may be either very floppy or very stiff. Birth defects, such as spinal curvature, a small jawbone, or a small head sometimes occur along with CP. Symptoms may appear or change as a child gets older. Some babies born with CP do not show obvious signs right away. Classically, CP becomes evident when the baby reaches the developmental stage at six and a half to 9 months and is starting to mobilise, where preferential use of limbs, asymmetry or gross motor developmental delay is seen.

Secondary conditions can include seizures, epilepsy, apraxia, dysarthria or other communication disorders, eating problems, sensory impairments, mental retardation, learning disabilities, and/or behavioral disorders.

Speech and language disorders are common in people with Cerebral Palsy. The incidence of dysarthria is estimated to range from 31% to 88%. Speech problems are associated with poor respiratory control, laryngeal and velopharyngeal dysfunction as well as oral articulation disorders that are due to restricted movement in the oral-facial muscles. There are three major types of dysarthria in cerebral palsy: spastic, dyskinetic (athetosis) and ataxic. Speech impairments in spastic dysarthria involves four major abnormalities of voluntary movement: spasticity, weakness, limited range of motion and slowness of movement. Speech mechanism impairment in athetosis involves a disorder in the regulation of breathing patterns, laryngeal dysfunction (monopitch, low, weak and breathy voice quality). It is also associated with articulatory dysfunction (large range of jaw movements), inappropriate positioning of the tongue, instability of velar elevation. Athetoid dysarthria is caused by disruption of the internal sensorimotor feedback system for appropriate motor commands, which leads to the generation of faulty movements that are perceived by others as involuntary. Ataxic dysarthria is uncommon in cerebral palsy. The speech characteristics are: imprecise consonants, irregular articulatory breakdown, distorted vowels, excess and equal stress, prolonged phonemes, slow rate, monopitch, monoloudness and harsh voice. Overall language delay is associated with problems of mental retardation, hearing impairment and learned helplessness. Children with cerebral palsy are at risk of learned helplessness and becoming passive communicators, initiating little communication. Early intervention with this clientele often targets situations in which children communicate with others, so that they learn that they can control people and objects in their environment through this communication, including making choices, decisions and mistakes.

Early Nutritional Support In one cohort study of 490 premature infants discharged from the NICU, the rate of growth during hospital stay was related to neurological function at 18 and 22 months of age. The study found a significant decrease in the incidence of cerebral palsy in the group of premature infants with the highest growth velocity. This study suggests that adequate nutrition and growth play a protective role in the development of cerebral palsy.

Physiotherapy (PT) programs are designed to encourage the patient to build a strength base for improved gait and volitional movement, together with stretching programs to limit contractures. Many experts believe that life-long physiotherapy is crucial to maintain muscle tone, bone structure, and prevent dislocation of the joints.

Occupational therapy helps adults and children maximise their function, adapt to their limitations and live as independently as possible.

Orthotic devices such as ankle-foot orthoses (AFOs) are often prescribed to minimise gait irregularities. AFOs have been found to improve several measures of ambulation, including reducing energy expenditure and increasing speed and stride length. —very helpful!

Speech therapy helps control the muscles of the mouth and jaw, and helps improve communication. Just as CP can affect the way a person moves their arms and legs, it can also affect the way they move their mouth, face and head. This can make it hard for the person to breathe; talk clearly; and bite, chew and swallow food. Speech therapy often starts before a child begins school and continues throughout the school years.

Hyperbaric oxygen therapy (HBOT), in which pressurized oxygen is inhaled inside a hyperbaric chamber, has been used to treat CP under the theory that improving oxygen availability to damaged brain cells can reactivate some of them to function normally. Its use to treat CP is controversial. A 2007 systematic review concluded that the effect of HBOT on CP is not significantly different from that of pressurizened room air, and that some children undergoing HBOT will experience adverse events such as seizures and the need for ear pressure equalization tubes; due to poor quality of data assessment the review also concluded that estimates of the prevalence of adverse events are uncertain.

Nutritional counseling may help when dietary needs are not met because of problems with eating certain foods.

Both massage therapy and hatha yoga are designed to help relax tense muscles, strengthen muscles, and keep joints flexible. Hatha yoga breathing exercises are sometimes used to try to prevent lung infections. More research is needed to determine the health benefits of these therapies for people with CP. –LOVE YOGA!

Surgery for people with CP usually involves one or a combination of:

  • Loosening tight muscles and releasing fixed joints, most often performed on the hips, knees, hamstrings, and ankles. In rare cases, this surgery may be used for people with stiffness of their elbows, wrists, hands, and fingers. —this is what serial casting did for me, yet a more mild, prolonged form of aid!
  • The insertion of a Baclofen Pump usually during the stages while a patient is a young adult. This is usually placed in the left abdomen. It is a pump that is connected to the spinal cord, whereby it sends bits of Baclofen alleviating the continuous muscle flexion. Baclofen is a muscle relaxant and is often given PO to patients to help counter the effects of spasticity.
  • Straightening abnormal twists of the leg bones, i.e. femur (termed femoral anteversion or antetorsion) and tibia (tibial torsion). This is a secondary complication caused by the spastic muscles generating abnormal forces on the bones, and often results in intoeing (pigeon-toed gait). The surgery is called derotation osteotomy, in which the bone is broken (cut) and then set in the correct alignment.
  • Cutting nerves on the limbs most affected by movements and spasms. This procedure, called a rhizotomy, “rhizo” meaning root and “tomy” meaning “a cutting of” from the Greek suffix ‘tomia’ reduces spasms and allows more flexibility and control of the affected limbs and joints.
  • Botulinum Toxin A (Botox) injections into muscles that are either spastic or have contractures, the aim being to relieve the disability and pain produced by the inappropriately contracting muscle. — Did this at age 10, more mild form of aid as well!

A new study has found that cooling the bodies and blood of high-risk full-term babies shortly after birth may significantly reduce disability or death.

Cord Blood Therapy: There are no published randomized controlled trials or meta-analysis of this treatment modality in cerebral palsy. In March 2008 a boy diagnosed with cerebral palsy appeared on the Today Show with his family. The parents noted that he could not walk on his own and appeared to be “swallowing his tongue” at times. He was eventually diagnosed with cerebral palsy and could only walk with the aid of a walker for a short time. Earlier that year he participated in a clinical trial involving his own cord blood that his parents had saved when he was born. His parents reported that within 5 days after the procedure he was walking on his own and talking, something his mother said he was not capable of on his own and it was doubtful he would ever be able to do on his own. They also reported that the doctors also told them that if his rate of progress continues uninterrupted until he is 7 he will be pronounced cured.

Conductive education (CE) was developed in Hungary from 1945 based on the work of András Pető. It is a unified system of rehabilitation for people with neurological disorders including cerebral palsy, Parkinson’s disease and multiple sclerosis, amongst other conditions. It is theorised to improve mobility, self-esteem, stamina and independence as well as daily living skills and social skills. The conductor is the professional who delivers CE in partnership with parents and children. Skills learned during CE should be applied to everyday life and can help to develop age-appropriate cognitive, social and emotional skills. It is available at specialized centers.

Biofeedback is an alternative therapy in which people with CP learn how to control their affected muscles. Some people learn ways to reduce muscle tension with this technique. Biofeedback does not help everyone with CP.

Neuro-cognitive therapy. It is based upon two proven principles. (1) Neural Plasticity. The brain is capable of altering its own structure and functioning to meet the demands of any particular environment. Consequently if the child is provided with an appropriate neurological environment, he will have the best chance of making progress. (2) Learning can lead to development. As early as the early 1900s, this was being proven by a psychologist named Lev Vygotsky. He proposed that children’s learning is a social activity, which is achieved by interaction with more skilled members of society. There are many studies, which provide evidence for this claim. there are however, as yet no controlled studies on neuro-cognitive therapy.

Patterning is a controversial form of alternative therapy for people with CP. The method is promoted by The Institutes for the Achievement of Human Potential (IAHP), a Philadelphia nonprofit, but has been criticized by the American Academy of Pediatrics.[The IAHP’s methods have been endorsed by Linus Pauling, as well as some parents of children treated with their methods.

Ok so that pretty much covers the mechanics of it, I think. Haha… I bolded some stuff I found interesting, as it applies to my life with CP. Seeing as Spastic CP ( I have that!) is the most common, I found this other article:

http://www.indianchild.com/CerebralPalsy/spastic-cerebral-palsy.htm

On a less informative note, I had another soccer game today! It was pretty awesome if I do say so myself. 🙂 I almost scored a goal, except one girl got in my way. My my my it was such an inconvenience. :p I stretcheed really well afterwards, hopefully I’ll stay this limber, otherwise this running will do no good for me in the future. I feel like I have really kicked up the gears lately, I can run about 3 miles now at a steady pace without stopping, I am so happy. 🙂 My parents, a few others ( and my sister!!) are doing a 200 mile relay race from Santa Barbara to Dana Point, alllll down the Pacific Coast Highway for about two days non-stop! It is a 12 man team, and each runner has 3 legs of different times and milage. I am so excited for them to kick some butt! I will be waiting for them here as they travel down the coast. Yay! 🙂 I sometimes wish I could run that much, but it is just too hard on my body and I dont want to risk my health at this point in my life. Trying to be smart about it is all! Life is about keeping everything in moderation.

Hope all is well! Can’t wait for spring break, are you all counting down the days or what!?  Be on soon,

-Katy