Newly diagnosed? In other words, has the baby you’re carrying been diagnosed with a medical condition in-utero? So many feelings swirl in reaction to such news.
So, what now? What do you do when you receive such unexpected and challenging news? First, take time to grieve your loss — because it is a loss. The loss of the dreams and expectations you had for your child is an overwhelming reality to face. But fear not, for there are other treasures to cherish that await you. Life is still precious, no matter what form it comes in!
And if you truly feel unable to raise the child, remember that adoption is an option. There are parents who are more than ready to welcome a child with special needs.
You Are Your Child’s No. 1 Advocate
Whether you gave birth, are fostering, or have adopted a child with special needs, educate yourself on your child’s health care issues. Ask the medical staff working with your child to explain his or her treatment strategy thoroughly so that you remain well informed. It is not you versus them — work together. They won’t be taking your child home and caring for him or her on a daily basis, so you need to be a part of knowing as much as possible about your child’s condition. You are the hub for your child’s care team.
Start a notebook or a journal for the questions that may cross your mind and use a binder or folder for test results, educational handouts, and other medical paperwork. You’re going to wonder about a myriad of things, so voice your questions or concerns to your doctor. This journey may seem overwhelming, so as with anything important in life, get organized now.
Learn from Others
If you are a parent or expecting parent of a child with special needs, you are not alone. Do not be afraid to speak to people in support groups created for your child’s condition. They are happy to talk about their experiences, and they are great resources for you learn from. If you are having trouble understanding your child’s condition and treatments, support groups can help clarify them for you. Furthermore, these people will understand your fears, concerns, and roller coaster of emotions better than anyone else.
You can also find information and support through the internet. Sites such as Be Not Afraid provide support to parents experiencing a prenatal diagnosis and carrying to term. The Mighty, another great online resource, features hundreds of stories from parents and caregivers of children and adults with special needs. L’Arche, which features communities of faith and friendship for people with and without intellectual disabilities, is yet another group that you can turn to for advice, comfort, and support.
Caring for Those Who Cannot Care for Themselves
Life is about challenges and obstacles, and we are not guaranteed it will be good or “fair.” It is how you rise to these challenges and overcome obstacles that determine your quality of life. Whether you choose to raise your child, place your child for adoption, or adopt a special needs child, you both can live a full and happy life.
(For a full list of resources for special needs children, click here.)
By Danica R. Vassigh
The author wishes to acknowledge contributing writers and researchers Molly Pannell and Lauren Sumners.