October 12, 2020: The Unspoken Grief of a Special Needs Diagnosis.
There’s a type of grief that comes along with a life-altering event unrelated to death. Pauline Boss is known for naming it “ambiguous loss” and it’s associated with either a physical absence with psychological presence (divorce, missing persons, miscarriage) or a physical presence with psychological absence (dementia, addiction, chronic illness). It’s the kind of grief that someone experiences when there is a change in a relationship and generally no resolution to the change. When parents receive a diagnosis that their child has special needs, they often go through an ambiguous grief process, and typically don’t know what to do in this unfamiliar or unexpected bereavement.
Finding out that your child has ADHD, Autism, Cerebral Palsy, Down Syndrome, deafness, blindness, muscular dystrophy, sensory processing disorder, etc. can turn things upside down, even if you had already noticed that your child interacted with their world differently than other children.
Every parent implicitly or explicitly has an idea of how things are going to go when their family blooms. There’s an envisioned future that tumbles down when a doctor says the tests they ran confirm there’s a name for your child’s challenges. So many questions arise…What does this mean? How/why did this happen? Do I have what it takes to be the parent my child needs? Will they walk or talk? Will they have friends? So many questions.
The thing that makes diagnosis grief extra difficult is that it doesn’t happen just once. As your child grows and moves through developmental stages, their challenges will be present. Their peers will meet milestones that your child may or may not meet, and your heart will feel that squeeze. You might also grieve if/when your child becomes aware of their differences and asks questions or expresses their feelings to you.
It’s so important to recognize your grief, feel all of your feelings, think all of your thoughts, and find compassion for yourself. Do what you need to do to care for yourself. Eat, sleep, exercise. Cry, growl, space out. Find a group of friends and other parents who get it. And enjoy your child. Love your family. Create and embrace all the joyful moments in parenthood.
If you are a friend or family member of a special needs parent, you can support them by:
- Listening and talking without judgement.
-Extending grace, being compassionate and understanding.
-Offering to help by babysitting, doing chores, making a meal, or taking siblings out.
-Learning as much as you can about their child's challenges.
-Including them and their children.
-Planning fun outings, sharing memes, watching silly movies (humor and laughter keep sanity alive).
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