Taking the journey together

A diagnosis of disability for your child can be a shock to your family. There is no wrong or right way to process your child’s diagnosis. And like any life change it can be a new and stressful challenge.

Some parents can quickly get on the same page and work well together as a team. Other times, it takes each person a little longer to deal with and accept the new reality.

A diagnosis before birth

When a baby is diagnosed before birth, it often affects the mother differently than the father. She may be dealing with the physical and emotional effects of carrying a baby she now knows has a disability. He may be dealing with his own emotions and struggling to be strong for his wife. They may both have feelings of fear and guilt that they caused their child’s disability. Their hopes and dreams for the child and the family they thought they’d have can seem to shatter under the weight of the diagnosis. 

A diagnosis at or shortly after birth

A diagnosis at birth or shortly after can cause what should be a joyful time to become a nightmare of uncertainty. While mom is recovering from childbirth, dad may have difficulty maintaining his work and family life balance. Understand that each of you may have different approaches to your roles as parents. You will probably not feel and respond to this new challenge in the same way. Try to explain to your partner how you feel. If you aren’t seeing things the same way, ask questions to help you understand your partner’s experience or viewpoint.

A diagnosis later in childhood

When a child is diagnosed later in childhood, one of the parents might have already realized that there were some issues and started to explore the next steps. But the other parent may be completely blindsided. This can cause friction, because the two parents are at completely different stages of understanding and acceptance.

Whenever the diagnosis happens one thing is clear: your relationship will be affected. Knowing this is a necessary first step to overcome your struggles and become true partners in parenting.

Simple tips for maintaining your partnership

  • Communicate—Talk to each other regularly about your feelings and concerns
  • Make your partnership a priority—Set aside time for date nights or even a walk around the block while a family member cares for your child
  • Meet your partner wherever he or she may be—Understand that each of you will handle this differently. Don’t try to force the other person to adopt your perspective
  • Seek professional help when needed—See a marriage counselor or your clergy person. Communication issues can sometimes be resolved with just a few visits
  • Find a support network—Reach out to other families in similar situations 

For those taking the journey alone

If you are a single parent it is critical to build a support network that includes extended family members, friends, therapists, and, perhaps most importantly, other parents who are in the same situation. Your support network can help you work through the stages of adaptation, offer help with medical visits, and care for your child so you can take care of yourself.