Finding out that your child has a disability is challenging for any parent. That is why it is recommended that you seek the counsel of professionals to help you cope.
Parents are sometimes left temporarily paralysed after finding out the news, which more often than not prevents them from taking any action. But there are ways to survive this. There are also warning signs, treatments and relevant information out there that are available for families and children undergoing such difficulties. Let’s first look at some of the more common disabilities.
This disabling birth defect occurs when the tissue surrounding the developing spinal cord of a fetus doesn’t close properly. There is no known cause to prevent Spina Bifida or a cure.
Under normal circumstances, the neural tube forms in the developing baby in the first few weeks of pregnancy, and closes by the 28th day after conception. In babies with Spina Bifida, an area along the lower end of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones that make up the backbone.
There are different types
- Spina Bifida Occulta
- Spina Bifida Cystica
- Meningocele and
Folic acid intake has proven to be helpful in preventing Spina Bifida. Folic Acid can be found in: Whole Grains, Dried Beans, Leaf vegetables and Fruits and in Folic Acid supplements that can be bought from the pharmacy.
Ongoing therapy, medical care, and/or surgical treatments may be needed to prevent and/or manage complications throughout the individual’s life.
Down syndrome or Down’s syndrome
Closely associated with the disability category of intellectual disability – this genetic disorder is also the leading cause of cognitive impairment. It is diagnosed when a person has 47 chromosomes instead of the usual 46. It has a few known causes, but a cure is yet to be found.
Maternal age: The most common risk factor for Down syndrome is maternal age. As a woman gets older, so does her risk of having a pregnancy with a chromosome abnormality.
Family history: Parents with a history of Down syndrome in their families, or women with Down syndrome themselves, are at risk of giving birth to a baby with the disability. Prenatal screening is available and a formal diagnosis through risk tests can be carried out before mom gives birth. This will help the expectant mother make preparations and arrangements in case of complications.
Symptoms range from mild to severe and include:
- Mild learning disorders
- Developmental delays
- Characteristic facial features (small ears, small nose, short neck, white spots in the eye(iris)
- Low muscle tone in infants
Regular health checkups should be scheduled for other conditions that arise as a result of Down syndrome, such as visual impairment, infections, hypothyroidism and obesity amongst others. However, it is important to note that children with Down syndrome should not be excluded from family life or be ignored,as they too can live full productive lives.
Hearing loss is more common than we think. It can happen at birth or when children are of school-going age. Early detection is critical to avoid frustrations and to help avoid confusion.
- No reaction to your voice or those of others
- No reaction to loud noises
- Doesn’t coo or babble by 9 months of age
- Slow to develop language
This is a group of disorders that involve brain and nervous system functions such as movement, learning, hearing, thinking and seeing.
The severity of the impairment varies from clumsiness or a mild limp to immobility requiring use of a wheelchair. Countless surgeries may be required, while with some children respond well to physiotherapy.
- Delayed or no accomplishment of motor milestones, including rolling over, sitting, crawling, or walking
- Decreased muscle tone or increased muscle tone (the muscles may be too stiff or too relaxed)
- Poorly coordinated movements
- Persistence of immature reflexes
This lifelong development disability makes it difficult for children to interact or communicate. Sensory stimulation may cause children with autism to over or under act. Children with the disability also have trouble relating to others.
Early Signs Warnings
- Mostly avoids touch
- Rocks/ bangs head
- Has not tried to utter words by 16 months
- Fails to point or look when others point out an object
- Can’t maintain good eye contact
- Makes little attempt to communicate
- Develops language and then stops talking
- Makes no attempt to acknowledge parents or others
The degree of visual impairment ranges from partially sighted to totally blind. It is highly recommended that children have a regular eye test, especially before entering school and throughout their school years, so that problems can be detected early.
- Any change in the normal appearance of the eye
- Constantly crosses eyes, but most babies do that from time to time
- Squints or closes one eye
- Constant teary and cloudy eyes
- Blinks or rubs eyes frequently
- One eye drifts in a different direction
- Poor hand-eye coordination
Cleft lip and Cleft palate
This is a physical deformation which can usually be fixed. This disability presents itself at birth with a split lip and/or palate. This disability makes it difficult for children to drink through a straw, talk, breathe, smile and often leaves children as social outcasts, as it affects the child’s appearance. It may also cause ear infections. This is also the world’s fourth most frequent birth defect.
Treatment usually involves surgery to close the lip and/ or palate, and is ideally performed during the first year of a child’s life. Operation Smile in South Africa send’s volunteers to help perform this operation is areas where treatment is not easily available.
Learning disability also referred to as learning difficulty or learning disorder, is an umbrella term used to refer to children or adolescents who, despite average or above average intelligence or cognitive potential, struggle with one or more areas of learning.
A learning disability is usually more apparent when a child starts formal schooling. But because children often compensate for their learning difficulties they may have average or above average intelligence. However, as the work load increases, so then does their disability show.
- Trouble with numbers
- Letters, speech, language disorder, coordination, motor skills or memory.
- Low verbal intelligence
- Difficulty understanding and carrying out instructions
Types of learning disabilities
- Verbal learning disabilities
- Auditory Processing Problem
- Reading, spelling, communication, expressive disorder
- Non-verbal learning disorder
- Visual perceptual disability
- Motor planning problems or dyspraxia
- Problems with attention and concentration
- Memory disabilities
- Planning and organisational disabilities.
With early identification and intervention, along with a cooperative attitude between school and parents, the prognosis for a child with a learning disability is mostly positive. Early identification can prevent or limit frustration and failure in school, as well as associated emotional, social or behavioural problems. Intervention usually includes:
- Individual or group remedial lessons by a trained remedial teacher
- Occupational therapy for children with NLD, motor disabilities and visual perception disabilities
- Physiotherapy for NLD and motor disabilities
- Speech and language therapy for children with specific language difficulties and auditory perception disabilities
- Social skills groups and behavioural management for children to help them to cope with the social and emotional difficulties which may arise from a learning disability
- Education for family members on the ramifications of learning disabilities and the effect on family functioning
- Homework tutors to assist with individual homework sessions
How to cope
Coping with your child’s disability is not easy and cannot be achieved overnight. But the sooner one accepts the condition, the sooner they can learn to live with the disability. Here are some suggestions on how.
- The best way to understand your child’s condition is to research and read about it as much as possible.
- Make sure that your doctor or the referred specialist and ask all the questions you need to know. It is probably a good idea to write the questions down beforehand.
- Be ready to receive help when people offer, and try not to feel sorry for yourself.
- Do not forget to look after yourself; eat, rest, take a bath or go out for a walk to clear your mind for a bit. You are better use to your child when you are feeling positive.
- Never get so absorbed that you neglect your other children, they are just as important.
- Counseling is the best way to help parents cope. There are also places and people to go to for the necessary help.
- Support groups are a great way to remain positive. It is always comforting to know that you are not alone.
Finding out your child has a disability is not a life-sentence. Parents shouldn’t blame themselves, but should rather educate themselves on the best options available for their child. There are resources out there, that can help to make this new reality easier for both you and your child.
Operation Smile South Africa (Cleft lip and Cleft palate)
+27 (0) 21 481 9103
+27 (0) 76 293 6835
The Association for Spina Bifida and Hydrocephalus, South Africa
+27 (0) 31 466 3600
Disabled Children’s ACTION Group
+27 (0) 21 797 5977