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Early intervention critical for special needs child Initial diagnosis provokes denial from parents

THE common reaction that the initial diagnosis of ‘Special Needs’ provokes is denial. It is difficult for families to accept that one of their own may find it  challenging to cross milestones that are  easy enough for others, and they may mourn their child’s lost potential for a long time. In recent times, however, ways have been found which may help support these ‘special’ individuals maximize their overall development.

Early intervention is a comprehensive system of programs and resources designed to meet the physical, intellectual, social and emotional needs of early childhood. The importance of early intervention, which can be as physical, occupational as well as speech therapies depending on the needs of the child, cannot be denied because we know that the first few years of a child’s life is significant, it provides the foundation for self -esteem and a child’s view of the world. Earlier the diagnosis, greater the chances of helping the family ‘accept’ and understand that treatment is available to help the child lead a more ‘meaningful life’.

Arab Times spoke to Dr Linda Graves Fouke, Christelle Khalife and  Rana Hadi of Hope School for Special Needs about the importance of early intervention in maximizing possibilities of a ‘special needs’ child leading  a productive life in his family as well as in the  society where he belongs.  Early Intervention helps the family understand that their child is not an isolated case and as such there are many others undergoing the same struggle they are  and that their child’s challenges makes their triumphs sweeter and that these weaknesses are often accompanied by amazing strengths. 

Question: What is meant by early intervention in special needs children?
Linda: Early intervention refers to programs or services in schools or early childhood centers which help babies and toddlers with developmental delays or disabilities. Early intervention focuses on helping such babies and toddlers learn the basic skills that typically develop during the first 3 years of life. These include physical (reaching, rolling, crawling, and walking); cognitive (thinking, learning, solving problems); communication (talking, listening, understanding); social/emotional (playing, feeling secure and happy); and self-help (eating, dressing).

Q: How early is this early intervention advisable for it to be effective?
Christelle Khalifa (Speech Therapist): You can start an early intervention program, as soon as a child is diagnosed with a special need.  This can take place from birth to 3 years old. The idea is to intervene as soon as possible while the brain and body are rapidly growing. For example, when a child is born with Cerebral Palsy or Down syndrome, the diagnosis is known from birth and the early intervention should start at that time. Even when a child is born premature, early intervention can start while the child is still in the incubator using basic stimulation such as light, touch, sounds. There are other disabilities such as autism which can be identified  at the age of  one or two when delays in a child’s social behavior and language skills becomes apparent.

Linda: In fact a very recent study dated November of last year  from the National Institute of Health has revealed the earliest sign of developing autism ever observed-a steady decline in attention to others’ eyes within the first two to six months of life.
Rana Hadi (Occupational Therapist): In cases where diagnoses are clear such as DS (Down syndrome), early intervention starts at birth. As for other cases, early intervention starts from 0-3 years or as early as the child is able to be diagnosed.

Q: Is it true that earlier the intervention, the preparation  is better for the child  to lead  a normal life as  he/she enters school?
Linda: Absolutely. Time is the critical element here. In some instances where a disability is detected from the moment of birth, neonatal treatment or therapies can be started immediately.
Christelle: Of course, because early intervention may help prevent or correct any developmental delay, so children are not held back later in life.
Rana: Yes it is true, early intervention will hasten the learning process and will help the child overcome difficulties.  In children with special needs, most skills are acquired through repetition and therapeutic enhancing; therefore early intervention is fruitful and will be a great factor in determining the child’s pace of development.
 

Q: How can a parent who has no experience of such matters, make out that something is wrong, and help should be sought? At times, the parent does realize there is a problem but at a much later stage.
Linda: We all know women have that special quality of “intuition” that alerts her to something that others around her may not see or feel. She knows something is not right or, on the other hand, she knows something is not wrong about her child. In either case, a professional diagnosis should be sought, and I would say, a 2nd opinion, as well.
Christelle: It is true that not all parents have experience of such matters. Here, they might compare their child’s development with other children from their family or friends. Then there is the pediatrician who may notice some signs of delay and refers the parents to the appropriate therapists for assessment and diagnosis. Not to forget that these days, Media is playing an important role in raising awareness for children with special needs just like you are doing in your newspaper.
Rana: The common scenario usually with those parents who cannot tell the differences, is that one close family member or a friend will drop a comment that will be an eye opener or as Christelle said, the pediatrician will talk to the parents about this issue. Usually, things go faster at this stage as the parents will start surfing the net or seek professional help to rule out the situation.
 

Q: What in your experience is the first reaction?  Is it denial, which is natural enough for a parent?
Linda: A parent receiving “bad news” about a child for any reason is bound to be distraught initially. But knowing from birth that a child is disabled or limited in his capacity to learn has a more profound impact in my opinion. The dream of raising a child to achieve success and   have a healthy family of his or her own is cut short. Worries about the baby’s future exist from the beginning. One moves through the stages of grief only without the death - shock and denial, pain and guilt, anger, depression, acceptance and hope, and finally moving on to find solutions and help for the future.
Having a supportive spouse and family members as well as professional help is important.
Christelle: Parents may have different reactions during this traumatic period. It is true that one of the first reactions is denial.  Parents may say: “This cannot be happening to me, to my child”. Fear can be another immediate reaction: Fear of the future, fear of society’s rejection. And there is sometimes a feeling of guilt “Maybe it’s my fault, maybe I did something wrong”.
Rana: It depends, if the parents have discovered on their own that the child is in need of help, they will be past that stage, but if they were  approached by someone else, it is most possible that they will be in a stage of denial.
 

Q: Can this delay in seeking help be detrimental to the child?
Linda: The sooner therapy begins after a proper evaluation and diagnosis of a child, the better. It is now common knowledge among early childhood educators that by the time a child is three years old, 90% of their brain has been developed. The quality of learning environments for babies and toddlers is critically important.
Christelle: Of course delaying intervention is undesirable for the child. Any delay may affect his emotional, social, educational, physical and language development
 

Q: Do you think seeking professional help is important to diagnose the child’s disability?
Christelle: Yes sure. For example, if a child is diagnosed with cerebral palsy, the occupational therapist will help the child  to develop the maximum degree of self-care and functional independence and the speech therapist will work on feeding and vocalization, and in some severe cases  the speech therapist will teach the child use of  Augmentative and alternative communication.
 

Q: Studies have shown that the earlier the child is submitted to therapy, the most effective would be the treatment approaches.  Human development and learning is fast during the preschool age so diagnosing any disability at this age can be a determining factor in making treatment a success. Do you agree?
Linda: The first five years matter and last a lifetime. Neuroscience (the scientific study of the nervous system) provides compelling evidence that early experiences impact brain development and can have a long-term effect on learning and behavior.
Christelle:  Yes, I agree! Most of the brain development occurs in the first 3 years. The brain is flexible (plasticity of the brain) and is capable of reorganizing and adapting to new information. Early intervention can rewire brain development and can make new connections and therefore develop neurological system. For example, studies have shown that by the first year, parts of the brain that differentiates sounds become specialized to the language the baby has been exposed to, but at the same time, the brain has already started to lose the ability to recognize different sounds found in other languages. This can explain why it is more difficult to learn new languages as we grow older.
Rana: We all know that human beings in general have to go through the normal milestones in order to develop their systems.  This development sometimes starts as early as conception. Therefore any delay in this development will hinder the general outcome for a human being. Early intervention will help compensate any missing time and will facilitate paths for improvement.
 

Q: Moreover, different disabilities show different symptoms. Can you just go through them?  Why don’t we start with autism first? What would be the first symptoms of autism?
Linda: Symptoms of autism spectrum disorder (ASD) vary from one child to the next, but in general, they fall into three areas:
* Social impairment
* Communication difficulties
* Repetitive and stereotyped behaviors.

Children with ASD do not follow typical patterns when developing social and communication skills. Parents are usually the first to notice unusual behaviors in their child. Often, certain behaviors become more noticeable when comparing children of the same age.
In some cases, babies with ASD may seem different very early in their development. Even before their first birthday, some babies become overly focused on certain objects, rarely make eye contact, and fail to engage in typical back-and-forth play and babbling with their parents. Other children may develop normally until the second or even third year of life, but then start to lose interest in others and become silent, withdrawn, or indifferent to social signals. This is in very general terms.
 

Q: Is the symptom for Down syndrome different?
Christelle: Sure, because it is often based on common physical signs such as:
* Decreased or poor muscle tone
* Short neck, with excess skin at the back of the neck.
* Slanted eyes
* Flattened facial profile and nose
* Small head, ears and mouth
* Wide short hands with short fingers
* A simple deep, crease across the palm of the hand
To  confirm the diagnosis, a blood sample is analyzed to determine the number of chromosomes. In addition, Down syndrome can be diagnosed during pregnancy.
 

Q: What about ADHD?
Rana:  ADHD (attention deficit and hyperactivity disorder) is a disorder in which students can lead a normal life and may not show any physical symptoms that require help. Although signs of hyperactivity may show up in early age presented in a poor attention span and sleeping disturbances. If ADHD is ruled out, the earliest we intervene the faster and more efficient the outcome will be, for both the family and the students. This includes specific  teaching and learning strategies.
 

Q: Is bipolar disorder considered a special needs disorder?  Is anxiety, bipolar disorder or autistic spectrum disorder difficult to diagnose at an early stage?  In these ailments, the child looks and behaves normally isn’t it?
Linda: No it is not. Bipolar disorder is a serious mental illness. It is also called manic-depressive illness. Children with bipolar disorder go through unusual mood changes. Sometimes they feel very happy or “up,” and are much more active than usual. This is called mania. And sometimes children with bipolar disorder feel very sad and “down,” and are much less active than usual. This is called depression. Anxiety is a milder mental health issue.
Autism is a group of developmental brain disorders, collectively called autism spectrum disorder (ASD). The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment, or disability, that children with ASD can have. Some children are mildly impaired by their symptoms, but others are severely disabled.
Similar to bipolar disorder, the causes and cure for Autism are not known. Research suggests that both genes and environment play important roles.
 

Q: Why is early diagnosis important?
Christelle: Diagnosis is very important to identify the child’s disorder according to the signs and symptoms he shows. It helps us as therapists know the prognosis of the case. But in my opinion, Diagnosis sometimes gives a label to the child. What is more important is to assess the child in all areas of development and analyze the causes of symptoms. We deal with each case differently because we are working with individuals, not with a label.
Rana: Only correct diagnosis is important. Unfortunately, in most cases we will find a child far away from his condition, but worst comes to worse when the child is stigmatized and labeled with something that is far away from reality. Diagnosis is only important if it is correct as it helps in expecting the prognoses and detects signs and symptom that affects the general level of performance.
 

Q: Early intervention for children with a disability is made up of therapies and services. What are the different services and therapies available to  these children?
 Linda: Assistive technology (devices a child might need such as a walker or a dictation machine)
Audiology or hearing services; Speech and language services; Family Counseling and training; Medical or nursing services ; Nutrition services
Occupational therapy; Physical therapy and Psychological services
 

Q: Linda, what are the early intervention therapies provided by HOPE School of Special Needs?
Linda: More and more of our youngest children are coming from nursery schools in the area that recommend a special needs program for the child. The issue could be behavioral or cognitive or both. Our 3-year-old program concentrates on strengthening speech and movement development as well as behavioral strategies to enhance social relationships. We apply an “active learning” model in our teaching program that incorporates a fast paced daily routine with lots of positive adult-child interaction from the classroom team, the speech and occupational therapists, as well as the athletic, Arabic and religion departments.

Q: Can early intervention therapies be provided at home or is it better to avail the facilities in a controlled environment like a special needs school?
Linda: I have always advocated a strong school-home partnership with regard to the education of children regardless of age and ability.  Because parents are a child’s earliest teachers, it is vital that parents start the learning process before a child is even ready for school. The more a parent seeks specific training on a particular program or teaching strategy to continue the therapy at home, the better it is for the child.
 

Q: What should one look for in an early intervention programme?
Linda: I would want to look for a school or center that has good “curb appeal” — well designed with children in mind, bright and cheerful, with a friendly atmosphere starting at the front door. That’s a door you’re going to go through 180 days a year, so it should be inviting. Next I would want a tour of the school to look at the classrooms, the corridors, the cafeteria and the playground. Does it have a warm and caring atmosphere? Is it safe and secure? Is Administrative staff aloof or engaged with staff and other parents? Finally, set up an interview to ask questions about specific therapies and staff qualifications.
 

Q: Does an early intervention programme include parents?
 Christelle: Parents play an important role in the early intervention program. They provide valuable information about their child’s history, interests and abilities during the assessment because the child might perform tasks at home but not at school in the therapy sessions. They also take part in setting up the goals to work on because they might have different goals as priority. In addition, they take part in implementing strategies and suggestions of the therapist in their daily life, and this will make a difference in the child’s progress.
Rana: Usually in the first few years, a child is very close to the parent, and therefore they should be taught to take advantage of any situation and turn it to an educational experience. Parents can provide a very positive impact and play a major role in the development and therapeutic implementation of their child.
 

Q: Can you share some case studies where early intervention has led to positive results?
Rana: I work with a Down Syndrome  child  who was born in June. When we first took him he showed poor muscle tone, poor head control and an inability to follow a moving object.
We started at the age of 4.5 months. He is now able to roll back and forth independently; he has developed head control, and now grasps a rattle in his palm. He smiles at mom and the therapist to express happiness.
 

Q: Where do you seek early intervention in Kuwait?
Rana: There are  some special needs nurseries in Kuwait.
Christelle: Home based therapy for small children is very good. It is easier for infants to be treated at home, but when the child is two years old, he/she can be sent to  a ‘school environment’.
 

Q: Is there a website where people who need help can get information?
Rana: Not that I know of.
Christelle: In Kuwait, information spreads by word of mouth.
Linda: One can go to the Public Authority of the Disabled for more information for a list of approved special needs schools and other institutions.
 

Q: I have heard that these facilities are very expensive in Kuwait.
Christelle: Yes, they can be expensive especially for the expatriates. 

biographies

Dr Linda Graves Fouke
Principal, HOPE School for Special Needs, 2008-present, Doctorate (1983) and Masters (1981) in Educational Administration, Teachers College, Columbia University, New York, New York MS (1970) and BS in Education, Indiana University, Bloomington, Indiana.

Christelle Khalifa 
Masters Degree in Multidisciplinary Studies with concentration in the area of Special Needs: University of New York Bachelor degree in Speech Therapy, Lebanese University, Beirut Worked as Speech Therapist at the Conductive Education School - Kuwait (2004-2007) Working at Hope School for Special Needs- Kuwait (2007 till present)

Rana Hadi
Specialized in Sensory Integration Dysfunction from USC and WPS California Bachelor’s degree of Occupational therapy - University of Jordan Amman Fulltime OT at HOPE School for Special Needs 22 years of working experience in Jordan, Saudi Arabia and Kuwait.

By Chaitali B Roy
Special to the Arab Times


By: Christelle Khalifa, Dr Linda Graves & Rana Hadi

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