CDLS

CDLS is known as Cornelia de Lange Syndrome. This is a genetic disorder. People with this syndrome experience a range of physical, cognitive, and medical challenges ranging from mild to sever. The syndrome has a widely varied phenotype, meaning people with the syndrome have varied features and challenges. Some common medical issues with this syndrome are gastroesophageal reflux disease, heart defects, seizers, feeding difficulties, vision problems, and hearing loss. They may also have Limb differences, including missing arms, forearms or fingers, are seen in about 25 percent of individuals with Cdls. People with Cdls also have very specific facial features such as arched thick eyebrows, long eyelashes, low front and back hairlines, a short upturned nose, downturned angles of the mouth and a thin upper lip, low set and malformed ears, and cleft palate.

There is a foundation know as the Cdls Foundation. The Cdls Foundation has a unique symbol.

This is a near and dear condition for me as I personally know some one with this syndrome. The life expectance of this syndrome differs from case to case. A good many of the people diagnosed Cdls will live well into adulthood, however each child must be evaluated for life threatening conditions such as heart defects, untreated gastroesophageal reflux, and bowel abnormalities. Cdls is a very rare disorder that appears at birth. Males and females are affected and it occurs in approximately in every 10,000 live births in the United States. The Children's Hospital of Philadelphia (CHOP)  have had cases of Cdls. How is Cdls diagnosed? Well it is done primarily through a clinical based exam and this is done on someone showing signs and symptoms. The diagnosis and evaluation are both done by a physician due to there being a need for the diagnosis confirmation and assessing which gene is involved. Cdls while being a developmental disorder that affects many parts of the body in 30 percent of cases the underlying genetic cause of the condition is unknown. Clds can be inherited in an autosomal dominant (NIPBL, SMC2, or RAD21) or X-linked (SMC1A, or HDAC8) manner. This information was found on the Rare Diseases Info. Another organization that has good information is NORD (National Organization for Rare Disorders).

Hearing Impairment

Hearing disabilities can rang from mild to completely deaf. You can be born with this impairment. You can also get it from an injury to the head, and a direct in injury to the ear itself. The good new is there is so much out there to help those people out. One thing you also need to know is that if you are speaking to someone with a hearing impairment you need to look at them directly because they are able to read lips. They can use sign language to speak as well. Some wear hearing aids and others have devices call Cochlear Implants. There are many different types of these implants. This surgery is done for people who who have sever hearing impairment or can no longer wear a hearing aid. People wit hearing impairments are amazing because their other senses are heightened. The great thing is with this implant and other hearing devices this opens a world that most take for granted. Penn State Medical Center Hershey Pennsylvania. There is a process that you have to go through to see if you are a candidate for this procedure. 

This is the finished look of the implant procedure. This is done by an Ear Nose and Throat Specialist and an Audiologist the both specialize in the ear and all the inner workings.

People with hearing impairments from a very you age are taught American Sign Language to help them communicate with family and friends sign language is also used for nonverbal individuals as well. American Sign Language is not completely easy to understand and yes there is a standard language that is taught. The reason it is so hard for people who work with these individuals is because some of them use their own signs because they have used it for so long.

This is the standard Alphabet this is the basic building blocks used in other parts of speaking with your hands.

These are some other basic signs used and can sometimes help while talking and teaching some one to speak with their hands. If you wan to learn more visit the American Sign Language . This is a very complex thing to learn and understand and when used correctly can makes a world of difference to the world of the hearing impaired and no verbal individuals. 

In Home care and what can it do for you. Well let me tell you if you have the right resources. I can help with that. I work with the Intellectual and Developmentally Disabled People but this is only a small part of in home care. We also go into peoples homes and help with personal needs. Some of the needs we help with are house cleaning, laundry, hygiene assistance and this list goes on and on. Some of the places to start looking to get the in help that you may need either for you or a loved one is to start with your local Area Agency On Aging. For those with disabilities a company such as SAM INC can help you out. For Veterans we have services for you as well through the Veterans Affairs Office. Some other advice is to talk to your family doctor about troubles you are having with daily living skills this will also help you to get and be recommended for in home health care services. Some in home health care companies are the one I work for personally and we provide Hab Aid services for the IDD population ( Intellectual and Developmentally Disabled), we also provide those much needed in home services as well. That company is CRI (Community Resources For Independence). There is also PRN ( PRN Medical Staffing) Some Group Home Options are Skills Of Central Pennsylvania. Raystown Developmental Services is another company for group home services if needed. Now group home are in home but they are staffed organized home with anywhere from 2 to 4 people living in the home. Some of the other places such as my company and the other one come into your home and help with things. One other company for Hab Aide Services is Happy Valley Hab Aide

This picture is from Happy Valley Hab Aide Services Face Book PageThis Company is one that plays against the Burnham Bull Dogs Special Needs Team


 Please take this Survey  to help better understand what can be done for you and services that are out there for you.

Scoliosis is another disorder that people suffer from and this can be life long. There are different types of this condition. The different types require different treatments. The Mayo Clinic has done surgeries for different types of this condition. Some of the treatments for this condition may require a rod to be place in the back to straighten out the spin it can also require a fusion in the spine to help as well. There are seven types of Scoliosis. Congenital Scoliosis is a type of scoliosis that you are born with. The Scoliosis Association has some great information in this as well. This site provides support and a wide verity of things to help you understand this condition. Some of the apparatus that can be worn for this condition are braces.

Types of Scoliosis

Adult Brace

                   

Childs Brace

Some other forms of devices are the rod in the back this is and extensive surgery. One type of rod is known as a growth rod used in pediatric patients with scoliosis. The type of rod used will depend on the condition and the age of the patient.

ADD (Attention Defecate Disorder) some kids with this are often miss diagnosed or go undiagnosed. Unfortunately it is yet another disability that people do not know how to handle. Like this and other disabilities a routine is key and while this may be hard it is needed. ADD is some time known as shiny object syndrome meaning that their attention goes from one thing to the next. These children and even adults have trouble focusing on things such as school work, chores, work, movies, games, and every day life. There is another disorder that goes with this is ADHD Attention Deficit Hyperactive Disorder) These disorders often go hand in hand with each other. ADHD is often miss understood and comes with other disorders such as depression and other mood disturbances. Some one with ADHD may feel like this picture or even be told some of these things in the following picture and it can not be more untrue.

Some other words used for people with ADHD you can read in this one as well.

I want people to know that ADHD is a very real thing and it can be handled with some patients understanding and perseverance it may not be your ideal situation but a the same time others live with this every day and would not change it for the world because they love their kids and family members as I do my job working with people with this condition and many others.

What is a Developmental Disability you may ask? It is a wide variety of things from physical deformities to Autism. One thing you also need to understand is that not all of these disabilities can be seen. Someone with dyslexia while this is not an outward visibility it exists for many people. It is a 50:50 ratio for both lefthanded and righthanded people. Dyslexia ranges from number confusion to spelling errors reading things backwards or spelling words phonetically meaning how it sounds. Some other types of dyslexia are found in this link Dyslexia Types. While other disabilities are more visual such as Spina Bifida. This is a spinal malformation causing part of the spine not to close.

This condition can be operable or inoperable and can cause a person to be in a wheelchair for life.

To the DSP's (Direct Support Professionals) out there I know this job is very trying and we work long hours and go through so much. This job is also very rewarding when we get to see a smile on the faces of those we support. The accomplishments they achieve. Such as learning a new task and being able to be more independent. Direct Support Professional this link will let you know what a DSP is.

Direct Support Professional at Work

While I have talked about my job and what I do as an in home Hab-Aid to people with disabilities. I would like to focus on the parents. For parents it is a never ending job. This job gets harder as these days of uncertainty keep growing. The never ending question when can I go back to my day program? Why can't I see my friends? What did I do wrong? Am I in trouble? and these questions go on and on. One thing I have done is reassure them that they did nothing wrong and this will pass. Let them know it is ok to be scared and to talk about their feelings. Tell them that you love them and most importantly try to keep them on a routine. For those with disabilities this is very important. I can relate to some many of these parenting problems. A good web page to check out is Autism understanding. Know that autism comes in many forms from high functioning, to low, verbal, to non verbal. The video below is in YouTube and has good information.

To all out there working with people with disabilities. over the past month I have still been working like everyone else in the medical in home filed. The past couple days have made me smile in this trying time. The person I work with has not only put a new look on life but has made me laugh. Some trials and tributes of her goes as follows. I don't need a hair bath today as she is sitting with her hair in utter disarray. One other comment when asked how she was her response was Chirper. The picture above is from Hometown Sports through out Central Pennsylvania.

This team is so much fun to work with these kids put so much heart and soul into these games. The best part is yes I get to see them every Wednesday for games and even on Sundays so during the August through fall months if your every out and want to see a great game and meet a great group of people that I have the pleasure to work with stop on by we love an audiance. I love my job and the people and once you get to know them you will too.

Good evening all. I wanted to jump on to night and share some of my experiences while working with people with a disability. I have had some good and bad experiences. One of my most memorable moments was when I was having a bad day and my consumer came out and gave me a big hug and patted my head. While doing this she said Awww poor hun. This simple kind gesture made me smile for the rest of the night. Now some bad goes with this job as well you can be hit, kicked, and even threatened. I must say even with the bad I would not change it for the world. A link you may want to look at is the Special Olympics Page. On this page you will find different ways to help people with disabilities to participate in sports. One of the sports they do is basketball.

Two Of Mifflin County Special Needs Basketball Players

The best part of this day way seeing all the althets play and have fun wether the won or lost

Check out the link for Saint Francis College to view more great pictures of not just these athlets but others.

Good morning to all out there who want to learn about people with disabilities and how to change the way that you look at them with in the community. One thing you need to know is that all disabilities are not seen. These disabilities range from mild to sever. This means it could be a learning disability to being completely paralyzed from the neck down. Some things that might better help you to look at is Skills OF Central Pennsylvania. www.Skillsofcentralpa.com  this is a company that I worked for and they do amazing things with people. Another Site that you may want to check out is this downs syndrome  https://www.ndss.org/about-down-syndrome/down-syndrome-facts.