Journal for the Week

One of the things that I have to do during my internship, is write a weekly journal. So I thought that I would share with you all one of the journals that I just wrote for this week. I have had to keep names out and even if they are male female for my clients confidentiality. 

Even though this may seem a little "down" I am really enjoying my internship and love that I am finally beginning to start my case load!! 

             

            Since being here at Matheny, I have not been able to do true music therapy due to the flu quarantine that has been in place. This week it has turned from a full quarantine to a partial quarantine, where green and red zone adults can co-mingle. I have finally been able to start my caseload, but only with clients that are on green and red. But hey, anything is better than what I was doing before. 

            Thinking back on the week, I think that my high point was meeting with my adult individual client. He has been known to be resist to the intern who is not the pretty girl intern. Obviously I am not the pretty girl intern, so I had concerns about approaching him. But when I told them on Monday that we would be meeting weekly for music on Tuesdays, they seemed excited. So Tuesday rolled around and I decided that it was going to be just a getting to know each other type of session. We talked and all, and I asked them “So --- how are you today?” and they got his dynavox (speaking machine) to say, “excited”. “What are you excited for ---?” I asked. They then pointed at me and I figured out that they were excited to have music therapy with me! It made me super happy and relieved that they wanted to do music with me. After this little moment, this made me feel really confident that we are going to have great music therapy sessions together.

             Since being here I have felt pretty frustrated with how the quarantine has been handled. The rules apply to some people and then they don’t to others. But my biggest frustration was last night during open mic night. Right before open mic, I was told that green and red zone adults and children could co-mingle in the dinner room. So I naturally told three of the children on green zone that were super excited about open mic, that we were having it. Then I was told that green zone children could not mingle with red zone adults, which was what I originally thought it was. So the three clients were upset that they couldn’t come to open mic. I was then told that I was only going to have green zone adults and children, so then I had to tell my red zone clients that they couldn’t come. I was very frustrated that every body was told a different thing, and then we had to contact a supervisor and wait for things to start. It all worked out eventually, but I was just super frustrated at that moment.

            After my individual session with my adolescent client, this was probably my low point for this week. I felt after the session that it was utter chaos, and I felt like it may not have been beneficial for them. I felt like this last week after our session, but I put it off saying that it was just the first session and it will be better next week. I know that the client is a little scattered, and benefits from unstructured experiences. But I also feel like I am the client, and they are the therapist at times. I need to figure out a way to get across that I am the therapist, and they are the client. But how do I do this? I have no idea yet…

            Over all this week, it has been great to actually get into music therapy and start my caseload. It is kind of nice to be able to gradually sink into the caseload, rather than jump right in without any swimmies to keep me afloat.  

Who We Serve

    “Matheny Medical and Educational Center is a special needs hospital and educational facility for children and adults with medically complex developmental disabilities.” (Matheny.org).  Matheny serves children and adults with Cerebral Palsy, Spina Bifida, Lesch-Nyhan Disease, and other rare diagnoses. To work effectively with patients with these diagnoses,a thorough understanding of each disease is required.
    Cerebral Palsy is a term that is used to describe a loss or impairment of motor function due to brain damage.  This damage can happen before, during, or after birth, and the severity of the loss or impairment depends on the location in the brain. With Cerebral Palsy, a persons ability to control their own movements, balance, posture, and /or coordination is affected.

There are three main classes of Cerebral Palsy; spastic,  which is the inability to control voluntary movement, athetoid which is the inability to control involuntary movements and have purposeless movement, and combination which is a mixture of both spastic and athetoid. Within the classes, there are four descriptions of the class; monoplegia is where the CP affects one arm, or one leg, diplegia is where both arms or both legs are affected, hemiplegia is where half the body is affected, and quadriplegia is where both arms and both legs are affected. Many clients that have Cerebral Palsy also have a related disorder such as seizure disorder, developmental delay, and vision, hearing, and speech abnormalities.

Spina Bifida is another diagnosis that is prominent at Matheny. Spina Bifida is an abnormal formation of the neural tube during development in utero. According to Merriam-Webster's Medical Dictionary (2013), the neural tube is “the hollow longitudinal dorsal tube that is formed by infolding and subsequent fusion of the opposite ectodermal folds in the vertebrate embryo and gives rise to the brain and spinal cord”. Essentially, the neural tube is like a garden hose, which can be pinched.  Anything below the pinch of the neural tube does not work correctly and only a trickle of information from the brain reaches that area. Fortunately, with current technology, doctors are able to go inside the uterus and fix the abnormal formation. This has drastically lowered the number of cases in the United States to 0.7 out of 1,000 live births.    

There are three types of spina bifida; occulta, meningocele, and myelomeningocele. Occulta usually only affects one vertebrae near the base of the vertebral column, where the neural tube does not close correctly.  Therefore, the plates of the vertebral arch can not fuse together correctly which causes the “pouch”. If this happens low enough down the vertebral column, the person will likely be asymptomatic. In its more severe form, more than one vertebra fuse together. Again, the individual may be asymptomatic for years, however they will likely realize they have loss of some sensations in their lower extremities.

Meningocele is the least common type of spina bifida. This is where the spinal cord is fully intact and some of the vertebrates have spilt and their meninges (cushions) are coming out through the openings. This type of spina bifida can be detected in utero and utero surgery can take place. The individual may suffer from bladder and/or bowel issues, some mental problems, and may have difficulty using their lower extremities.

The last type of spina bifida is called myelomeningocele and is the most severe and most common form of spina bifida. Myelomeningocele “is when the protective membrane of the spinal cord and the spinal cord itself protrudes through the hole in the vertebral column” (Spina bifida information sheet, 2012). When the spinal cord is completely exposed, the risk of infection (meningitis) is very high, so directly after birth, surgery is performed to correct the defect. People that are born with myelomeningocele spina bifida usually have permanent physical disabilities, and may suffer from developmental delays. Another side effects of myelomeningocele is that the child may be born with Chiari II malformation, “when the brainstem and cerebellum drop down into the neck and spinal column” (Spina bifida information sheet, 2012). When chiari II malformation is present, the spinal cord is being compacted which will cause all biological functions to be abnormal such as; breathing, balance, swallowing, and many other symptoms.

Lesch-Nyhan Disease is an extremely rare X-linked disorder and a severe lack or absence of the enzyme hypoxanthine-phosphoribosyltransferase (HPRT). The lack of or absence of HPRT causes a very high production of uric acid and renal dysfunction due to the build up of crystals in the kidneys. Patients with LND also exhibit an uncontrollable desire to self mutilate, and also suffer from neurological abnormalities that resemble cerebral palsy. Since LND is a X-linked chromosome, it is found mostly in males, and females are carriers. There have been less than a handful of women with LND documented, but researchers believe this is due to an extremely rare mutation during development.  

LND is considered a phenotype, “the external expression of a set of genes.” (Anderson, 2013). LND is a phenotype behavior because patients have these behaviors because of the missing enzyme HPRT, and those that don’t have the enzyme HPRT show the behavior. At the age of two, patients with LND will start to exhibit the self mutilating symptoms. This is in the form of finger, and lip biting, throwing themselves, hitting their arms, and heads against the wall. A way that is also self mutilating, is the act of hurting those around them that they care most about. By pushing those individuals away, they are making themselves isolated.

Even though LND patients have this compulsion to self mutilate, they feel pain the same as any healthy individual. They do not want to hurt themselves, and worry about hurting themselves, or others around them. A way to prevent the self mutilation, is to have these clients in safety restraints. These restraints help to put the patients mind at ease, and not worry about hurting themselves. Some other treatments to help these patients deal with their everyday lives are; stress reduction, avoiding disciplines and punishments, keeping the patient busy with different activities, teeth extraction, and ignoring the behavior. When you ignore the behavior, this is the LND behavior and not every day typical behavior. These patients may sound scary, and just plain mean, however Lowell T. Anderson stated it perfectly on her website saying, “It may be more accurate to think of the patients as doing the opposite of what they actually intend.” (Anderson, 2013). LND patients are very social, humorous, cognitively aware of their surroundings, and tend to the needs of others in their lives.

We sometimes label patients by their diagnosis, and can not see past their disabilities. Regardless of their diagnosis, or disabilities, patients are people first, with personalities and some of the biggest hearts that I have ever seen. Matheny is a place where children and adults can grow and have the fullest life that can be offered.

Reference List

Anderson, L. (2013). In Lesch-nyhan disease support group. Retrieved from http://lndnet.ning.com

About cerebral palsy. (2013). Retrived from http://cerebralpalsy.org

Matheny, (2005). Overview of disabilities.

Matheny, (n.d.). Cerebral palsy

Matheny, (n.d.). Spina bifida

Matheny, (n.d.). Neuropsychology of spina bifida

Matheny, (n.d.). Lesch-nyhan disease

McDonald, Eugene, (1987). Treating cerebral palsy, ProEd, Inc.1-2

Neural tube. (n.d). In Merriam-Webster’s online dictionary (11th ed.). Retrieved from http://www.merriam-webster.com/dictionary/neural%20tube

Reck, J. (2001). Basic guidelines of caregivers on use of adaptive equipment and transfer skills, Lesch-nyhan disease. 1-5.  

Retrieved from http://www.matheny.org

Spina bifida information sheet. (2012). Retrived from http://www.spinabifida.net/complications.html

Friendships - KEEP IN CONTACT

This past weekend, I went back down to Virginia to go to my friend/brother Joel's 21st birthday, and to see everyone. It was such an awesome weekend because seeing everyone was the greatest joy that I could have. I thought I would talk about this point in this blog today. 

This internship, is the first time that I have moved somewhere where I didn't know ANYONE! When I moved to Virginia, my friend Maddie from high school also went there. Then I moved around Winchester, but this is the first time I don't know anyone! Moving away from the people I love and care so much about has really taught me that I need to keep in better contact with people. Calling, texting, emailing, skyping, facbooking, twitting, etc. 

I have always been someone that has not kept in contact very well with people. My school of thought is that, I don't need to because my friends and I just jump right back in, like we were never apart. Why should I call or text all the time if this is the case?! Well - when you have nobody that you know where you live, and are starting all over again, you need that support system behind you to keep you moving and encouraging you to do what you came to do. My friends/family are my greatest support system in the whole world! 

I never really realized just how important some of my friendships and my brothers (fraternity) were until I left. I guess that is how it is with anything, you never realize how wonderful it is until its gone. The amount of love that comes from those friendships is nothing that I have ever encountered. I don't really know how to explain it, but its something that I will now always have. 

Point of this blog post - never let those friendship go. Work at them because they matter! No matter how far away you are from those that love you, you will be able to feel their love and support. I know I do, and I tell my friends/family that I miss them, and truly love them when ever I get the chance. 

Week 1 - DONE!

Made it through my first week being an intern...YES! Made it through the orientation and through my manual and all that jazz. CRAZY!!!!! 

So I got to taste my first music therapy experience here at Matheny. Once a week on Wednesday nights, we hold "Open Mic Night" where any patients in the facility can come in and sing what ever they want to sing for other clients. It was amazing to watch these clients just get up in front of each other and just sing their hearts out. It was very heart warming to watch this all happen. 

I also got to sit in on my first group session as well. It was very different from any music therapy that I have done before. The therapy part is very much about getting the client involved, and just being in the experience in itself. It was amazing to watch the therapists here work with the clients and see how each of them are so different in their styles, and approaches in the music therapy session. 

I am starting to get to know the clients, and their personalities. They are all so wonderful and so excited for Sabrina (other music therapy intern) and I to be here. We also got our case load, and I am so excited to start with those clients and getting to know them! 

Even though these clients may not have the communication skills that we are all used to, they are still people and have personalities. Having the background that I have at Double H, has really helped with being able to communicate, and interact with these clients. These are by far the lowest functioning clients that I have worked with, but all of them have the biggest personalities that I have ever worked with! 

In the next coming blogs, I want to discuss the different diagnoses that I will be working with! I knew a lot about some of the diagnosis, but I am learning something new every time I pick up a journal article or read a book about it. 


"Where words fail, music speaks" - Hans Anderson

The Start!

So the time has come! I am now in my 6 month music therapy internship!!! It's crazy to think that it's time for me to be doing this. I thought I was just moving into my freshmen dorm last week?! 

I am a music therapy intern at Matheny Medical and Educational Center in Peapack NJ. We serve clients with Cerebral Palsy, Spina Bifida, and Lesch-Nyhan Disease. If you would like to learn a little bit about Matheny, here is a link to our website: http://www.matheny.org/

What I have decided to do, is try and write a post at least once a week to keep people up to date with what I am doing here. Maybe I will even write more!!! I can not wait to learn more about Matheny, and about the people that we serve. These 6-months are going to be such a learning experience and one that I will never be able to forget.