Children with Special Needs

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This is a completely wrong perception. Due to incomplete media representation and lack of subject inclusion in school education, most people have no idea about the true meaning of this term. Can anyone imagine that people with food allergies or having G6PD deficiency (destruction of blood cells associated with eating fava beans) or suffering from cancer fall under the umbrella of having special needs? You could easily be one of them without even knowing. The definition of “special needs” is very broad and it encompasses a huge number of diagnoses. Children with special needs may have mild learning disabilities or profound mental retardation; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The term “special needs” stems from the extra medical, therapeutical or learning help that the specific condition requires. It is commonly defined by what a child cannot do- by milestones unmet, foods banned, activities avoided and experiences denied.[1]
 
To facilitate the terminology, one can classify the problems of a special needs condition leading to medical, behavioral, developmental, learning and mental health problems. It is important to note that there are several diseases that might fall into one or more of these categories, therefore the classification is not conclusive.
 
Medical problems:
Children with medical problems often require numerous tests, long hospitalization, expensive equipment and accommodations for disabilities. This puts a burden on family members, as they often need to deal with crises situations, uncertainty and worry. These include serious conditions like cancer, heart defects and muscular dystrophy. Chronic conditions like asthma, food allergies and obesity also fall under this category. This is in addition to congenital conditions like cerebral palsy and dwarfism.
 
Behavioral problems:
Children with behavioral problems require specialized strategies that are tailored to their specific abilities/disabilities, as they do not respond to traditional discipline. Accordingly, parents should be very flexible and creative. Examples of these behavior issues include ADHD and dysfunction of sensory integration.
 
Developmental problems:
Down syndrome, mental retardation and autism are examples of developmental disabilities. It is often very challenging to parents to provide the needed special services, therapy, schooling and inclusion in society.
 
Learning problems:
Children with learning disabilities like dyslexia and Central Auditory Processing Disorder struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and avoid self-esteem problems and behavioral difficulties. Parents of learning-challenged children need to be persistent both in working with their reluctant learners and with the schools that must provide the help these children need.
 
Mental Health Problems:
When a child suffers from depression or anxiety, the whole family is often put on a roller coaster of mood swings, crises and defiance. Here it is of utmost importance to get the right professional help in order to be able to make vital decisions concerning therapy, medication and hospitalization, if necessary. 
 
As soon as sensing that a child has a special needs case, parents have to take serious action immediately and not leaving the matter to chances or until the condition reveals itself. Early intervention can often help reduce the effects of the case by making parents aware of how to deal with it. A child with cancer, for example, can even be completely cured, if he/she gets the proper treatment before the disease spreads. Accordingly, following these steps is of utmost importance:
 
1.      Getting a diagnosis
This is the very first and most important step according to which the necessary measures will be taken. 
 
2.      Getting a second opinion
In some cases, conducting a few tests can determine the diagnosis. However, sometimes the right diagnosis is not a clear cut decision, especially if the case requires a lot of judgment and interpretation by the doctors. That is why getting a second opinion might be necessary. Parents should feel comfortable and accept the diagnosis. If not, then getting a third and fourth opinion can provide a wider picture. “I spent six years going to the USA to get consultation on my daughter’s condition, which was diagnosed as cerebral palsy. Only in the seventh year, the doctors found out that the diagnosis, on which we had based the treatment for all those years, was not right. The disease that she has is very similar, yet different and very rare”, said T.A.
 
3.      Grieving
Parents have right to mourn the fact that their child will not enjoy the perfect life that they wished for. In the beginning, parents are overwhelmed by the feelings of loss, guilt and fear. This is actually very healthy, since this initial shock is the driving force behind accepting the situation and rebuilding hopes for the future. 
 
4.      Reading, reading, reading
Reading about the child’s condition gives a better picture, as parents will be more capable of understanding and dealing with the special case. In addition, this will reduce their sense of loss and will guide them on how to start.
 
5.      Seek the support of family, friends, and other parents of special needs children
Not all friends and family members will have the capability to deal with a special needs child the right way, but their psychological support is of great help to parents. Other families with special needs children having similar cases are often more than willing to share their experiences so one would not feel alone. They will also aid in finding information about the services and schools needed.
 
6.      Build a service databank
This includes contact numbers of hospitals and doctors that can be contacted in crisis situation, as well as equipment sources, therapists, schools and the like.
 
Life is always challenging for both special needs children and their parents. In Egypt, it is rather extra-challenging due to several obstacles that are not easily solved: 
 
Medical services are not up to the standard
One of the biggest problems facing special needs cases is the poor standard of medical services. There are not enough good, qualified doctors who can provide a proper diagnosis. “You can go to several doctors here and each one would give you a different diagnosis”, complained T.A. “I once went to a dentist with my daughter who had cavities and needed a mouth guard badly. Although he wrote on his sign that he specialized in special need cases, he hadn’t heard of my daughter’s disease before and he did not have an idea of how he should handle her.” M.L. sadly tells the story about her experience saying “It was obvious that my son had some kind of abnormality. He had trouble talking and his eyes looked very weird. We took him to six doctors and each one told us something different. A brain surgery was performed, but his condition remained the same. ”Lab results can rarely be trusted, unless you have a connection to the owner or somebody working there. Even simple tests like full blood picture can show different results if the sample is taken to different labs. Cases that require thorough, complicated tests like chromosomal or genetic studies encounter a lot of confusion with respect to diagnosis and assessment. 
 
Poor nursing and maid services
Nursing and maid services are an equally serious problem here in Egypt. Some children with disabilities cannot act independently and constantly need professional help. Unfortunately, nurses here are unqualified and could easily be categorized as maids. Yet, they consider themselves experts believing that it is beneath them to serve the child and his parents. Although maids do not usually refuse to obey orders, they, like nurses, lack the knowledge of how to deal with special needs children.
 
Expenses
The high expenses associated with certain special needs cases can become a heavy burden to parents. These expenses include schooling, therapy, hospitalization, medication and equipment. Families with low income might find it difficult to provide the special care that their child needs. The deficiencies of cheaper public hospitals do not need mentioning.
 
Stereotypes
Due of limited or unfair media representation and wrong, long-established beliefs, a lot of people, especially among lower, not-well-educated classes, build the stereotype that special needs people cannot be integrated into society. "In a park one child approaches another to play with him. Immediately the mother of the first child grabs him and tells him not to talk with the second child anymore. When asked why she did that, the mother answered that she’s afraid the second child would infect her son. With a look of shock on his face, he replies, ‘but mental disability is not contagious’ ".[2] Some parents are ashamed of how their children look like. They are afraid of what people might think of them. M.D., who works as a school cleaner, tells the story about her mentally retarded niece saying “Her eyes looked popped out in very strange way. My brother and his sister used to put a bandage on them when going out. Otherwise, they kept her at home so that nobody could see her until she passed away at the age of seven.”
 
On the other hand, well-educated, upper-class people seem to be more understanding. “I’ve never faced a problem with my daughter”, said T.A. “Sometimes people stare a little bit too much, but otherwise, they are usually understanding and helpful. Only young children often lack the understanding of how to deal with a special needs kid. Sometimes they can be even mean.” This is where the role of media and education has to step in to spread more awareness about special needs people, the different cases or diseases, their success stories and how they can be integrated into society.
 
Difficulty to move around
It is extremely difficult to walk around in Cairo, even for a healthy person. The pavements have bumps and are too high. For people with disabilities using wheelchairs or walking aids, it is almost impossible. Ramps are mostly unavailable or too small. “Even the best sports clubs in Cairo do not provide good accommodation for children with disabilities”, pointed out T.A.
 
No available information
Over the past ten years, special needs services in Egypt witnessed a great improvement, however, there is little available information regarding these services. Parents often have to exhibit a lot of effort in finding information about schools, doctors and therapists.
 
Most people do not know what the term “special needs” truly means. It is of utmost importance to correct people’s perception concerning this issue, teaching them how to deal with special needs children and how to integrate them into society so that they can be as independent as possible. This requires education and awareness campaigns from the media side as to serve the community. To help the children and their parents lead a better life, medical, nursing and education services should be given greater attention than this.
 
The coming issues will serve this purpose and have detailed descriptions of the most common special need cases and how one can help.
 


 
[2] El Sirgany, Sarah. Unfair Media Representation. The Daily Star Egypt: 3 July, 2006.
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