You now know your child’s diagnosis. This is the beginning of a journey. The journey does involve grief. You will grieve the loss of the perfect dream-child you thought you had. You will struggle to accept the reality that this child is different; this child is special. You will stumble along in the dark, afraid of an uncertain future. Yet you can hardly conceive how this child will ultimately transform your life, reshape your character, and change your entire perception of the world.
Parents of special needs children need to prepare and fortify themselves for this undertaking, the way one would prepare for a long journey. You would not travel overseas without making arrangements, packing, getting enough sleep, etc. Nor should you expect to face this tremendous challenge without proper reinforcement.
Seek Counseling or Therapy.
You need a safe place to discuss your feelings and be heard. Seeing a therapist is not a sign of weakness, it’s demonstrating a healthy ability to nurture and empower yourself. Counseling sessions can help you put your emotions in perspective and help you feel renewed. Ask your religious leader or social worker for recommendations. Your personal physician can also make suggestions. Often close family members will know a good therapist.
Seek Support from Other Parents of Disabled Children.
(See my blog entry “Finding Support” for links.) Talking to other parents facing the same disability can be tremendously reassuring. You will see that they are surviving, and you can too. They also might have advice about specialists or programs they’ve tried. And you might make lifelong friends.
Schedule Time Off.
Ask family members to help baby-sit. Contact the local Parent Training and Information Center near you, or ask your physician specialist about “Respite Care” for parents. With certain complex disabilities, a qualified nurse or child care worker can come into your home and provide childcare. Often times this is free or partially refundable. You need to be able to have leisure time to catch your breath. This is vital.
Approach things one day at a time.
The process of grieving and coping takes time. Feelings of sorrow and frustration are completely normal. Don’t look into the future and assume the worst. Your child will probably surprise you. Take things day by day, and deal with each issue as it arises. Soon things will become more routine, and although life will never be exactly the same, it will become manageable, hopeful, and in time, even joyous.
Seek Spiritual Nourishment.
Remember that the child of your dreams never really existed. This is the child God intended for you to have, and in time you will discover that she is a greater blessing than that imaginary dream child could ever have been. I promise this child will stretch your soul. But do expect some growing pains along the way. Turn to your faith, whatever it may be, and trust in a higher power to sustain you.