Being a parent of a baby who is “different”

Some parents learn during pregnancy that they will have a baby who is different, while others only find out at birth or in the hours, days, weeks, or months that follow. In some situations, it’s the parents who notice their baby is different.

Regardless of when you learn of a chronic illness, disability, or other persistent problem in your child’s life, it can be deeply upsetting. After all, don’t all parents-to-be wish first and foremost for a healthy baby?

The need to know

Sometimes it’s hard to make a definite diagnosis. It can feel like these difficult times of worrying and waiting will never end. Receiving a diagnosis often makes it easier to know the best way to act, but this is not always the case. Your intuition and knowledge of your baby are valuable assets.

There are also many advantages to developing a good relationship with all the health professionals dedicated to your baby’s well-being.

Medicine has come a long way in recent years. It is now sometimes possible to identify the cause of a baby’s health problem or deformity. It may be a genetic or metabolic illness, a birth defect, a neurological disorder, or a syndrome. Regardless of whether medicine can help identify the cause of your child’s health problem, avoid falling into the trap of needing to blame someone or something.

Help is available

A baby with health or developmental problems often requires more care and has greater needs. It will take courage and a lot of love on your part. But don’t forget that parents also have needs as they learn to adapt.

There are support groups to help you come to grips with the situation and your baby’s health. Some services may also help you care for your baby. Remember that you just gave birth and still need to rest, despite the emotional strain, errands, appointments, medical investigation, and hospitalizations.

Obtaining a clear diagnosis for your baby is an important step. As soon as you receive a diagnosis, you can put your child on the waiting lists at rehabilitation centres that can help her. Unfortunately, these waiting lists are sometimes long. Various associations provide information and, in some cases, support for families faced with specific health problems. Don’t hesitate to ask questions of the health professionals and parents you meet.

Services differ from one region to the next. You’ll find the resources that suit you best by exploring what’s available. The website www.laccompagnateur.org provides a wealth of practical information that can guide you in your search for information about your “different” child.

Financial support is available. For information on the Supplement for Handicapped Children provided by the Retraite Québec, go to Financial assistance - at birth. To learn more about the Child Disability Benefit (CDB), visit www.canada.ca/en/revenue-agency/services/child-family-benefits/child-disability-benefit.html.

Take the time you need

When you bring a “different,” ill, or disabled child into the world, life becomes very action-oriented. You need to take care of him, stimulate him, give him medication, feed him, and so on.

All these tasks mean you lack the time and energy to simply be with your baby. “Being” with your baby who is different can simply mean spending time massaging him, stroking him, watching him sleep, just looking at him without worrying about his physical care or medication, sharing your sorrow with him, and expressing your love.

Forming a bond with your baby is as important for you as parents as it is for him. This contact without any obligation to “perform an action” will help you come to grips with and adapt to the situation.