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Born with a disability

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All prospective parents hold an idealised vision of their baby in their minds.  To be told that your child has been born with a disability shatters that image in an instant and can be incredibly difficult to come to terms with and accept.  Emotions such as shock, disbelief, anxiety and despair may wash over parents receiving such news, and translate later into grief, shame, guilt and depression.  These emotions are normal, and completely understandable.

Learning of the Disability

Modern ante-natal screening processes are very adept at identifying potential problems in a growing baby.  In most cases a disability, or the potential for one to develop, is identified early in the pregnancy.  This gives the parents options.  Talking to a specialist about what the identified disability means for your baby as he grows, and the implications for his life after birth, can allow parents to make informed decisions about how to proceed.

Most medical establishments can and will provide detailed information about most conditions, and put parents in touch with relevant support organisations.  Here, you can talk to parents who have gone on to give birth to their disabled baby and are happy to share their experiences. Parents can also receive the support and understanding of those who truly understand their predicament.

Confirmation Testing and Diagnosis

Further testing can generally be done to identify specific details of your baby’s condition, and lead to a more precise diagnosis.  This can help doctors decide on the most appropriate form of ongoing care for you and your baby, and prepare them for possible premature birth, and special care arrangements that will be needed when your baby is born.

It is important for parents to understand what tests are being conducted and why, and any risk factors involved.  Parents should always feel able to ask questions, and receive answers that are honest.

born with a disability

Adjusting to the New Reality

Adjusting to the fact that your ideal-baby scenario will not now play out can be terribly traumatic for parents.  There is a recognised emotional process that most parents will go through, which is very similar to that experienced by those who have suffered a personal loss.  In a sense parents of a newly diagnosed disabled baby are feeling the loss of their hopes and dreams associated with a healthy baby image, and so this similarity is not surprising.  The process may flow as follows:

Shock – emotions fluctuate from despair to unrealistic optimism, and physical outbursts may provide an outlet for pent-up frustration

Denial – avoidance of reality is a common reaction in these circumstances, and parents may manically search for a cure or alternative treatment that simply does not exist

Anger – the “Why me?” feeling can stimulate anger in parents, who may seek to lay blame for their baby’s condition at the door of anyone, but particularly those associated with the medical profession.  Doctors generally understand that these feelings are not personal, but rather an expression of the deep distress being experienced by the parent

Resignation – parents temper their optimistic hopes and become resigned to the fact their baby has a disability.  This is a dangerous point in the emotional rollercoaster, as it can lead to feelings of despair and ultimately see parents sliding into a depressive state.  The intense burden of responsibility that parents may feel can be overwhelming, and they may feel unable to cope.  Support and encouragement at this stage is vital

Acceptance – not just of the situation, but also of the baby as a whole person, as one to be loved unconditionally in the same way as would a healthy child.  This is the ultimate goal in the emotional turmoil.  It may take a long time for some parents to arrive at this point, and some may never get there.  An acceptance of your baby’s condition is enough to ensure the necessary care is provided, and no parent should ever be made to feel guilty if they find reaching unconditional acceptance difficult

As your baby grows, at birth, and at many stages thereafter, many parents will again revisit different stages of this emotional process.  It is the path to coping, and perfectly normal.

Getting Support

Once you start looking, you quickly realise that for any possible disability or condition you can imagine there is a support network already out there.  The internet is a great source, and local face-to-face groups are not uncommon for some of the more common disabilities.  It is important to remember that you are not alone in dealing with the fact that your baby has a disability, and reaching out for help is the first step towards creating a new and happy reality that embraces your baby for who they are, not what you hoped they would be.

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About Cally Worden

About Cally Worden

Seasoned freelance writer Cally Worden lives with her family and dog in a quiet corner of rural France. A love of the outdoors, and a fascination with her children's ability to view life with fresh eyes provide the inspiration for much of her work. Cally writes regularly for various websites and UK print publications on subjects as diverse as parenting, travel, lifestyle, and business, and anything that makes her smile.

Website: Cally Worden

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