After a Down Syndrome Diagnosis: How to Prepare
When Denise Schlaud first got the news that her baby had Down syndrome, she was devastated.
“I did not jump for joy,” says Schlaud in a letter she wrote specifically for other special needs parents. “Who would? I am certain that most mothers are not delighted to hear that their child has special needs. I wasn't in good shape for weeks. I couldn't eat, sleep, and I cried several times a day. My tears were hidden from everyone.”
Parents like Schlaud who receive the diagnosis that they didn't expect go through an emotional journey of disbelief, grief and, at last, acceptance.
But beyond preparing for the difficult emotions that can come with a diagnosis like Down syndrome, many parents will also need help navigating the practical journey of preparing for a baby with special needs.
From parents who have been down the road of a Down syndrome diagnosis, here a few helpful tips and resources:
- Chasing Hazel. Chasing Hazel is a blog about a mom of two beautiful girls, one of whom was born with Down syndrome. She runs a blog about her life and her Down syndrome journey, and on this page, she lists many different resources, from national foundations to personal blogs of fellow special-needs parents.
- Get a notebook. In the swirl of emotions that will go on during your pregnancy, it may be difficult to remember all of the different types of testing and information that you will encounter. Even if you can't remember what the doctors are telling you, it may be helpful to take notes or enlist the help of a family member to jot down specific details so you have it at your fingertips when you are ready to process the information.
- Download the New Parent Guide to Down Syndrome. The National Down Syndrome Congress has an entire resource page dedicated to expecting and new parents facing a Down syndrome diagnosis.
- Practice self-care. One of the practical tips that the NDSC suggests is ensuring that your self-care is a priority during pregnancy. Even something as simple as taking time out for a massage or to enjoy the summer sunshine on your face can make a big difference in caring for your mental and physical health.
- Find a pediatrician who specializes in Down syndrome. It may be helpful to line up a pediatrician who is very familiar treating children with Down syndrome or even one who specializes in the disorder.
- Connect with other parents. Connecting and supporting each other is key. You can find other parents dealing with the same emotions and difficulties as you at the Down Syndrome Diagnosis Network online.
Whatever steps you take to prepare after your baby's diagnosis, remember to give yourself time to grieve, connect with support, and move forward to meeting your baby.
As Schlaud says, “It's going to be alright. In fact, it's going to be more than alright. I wish I could fast forward you 10 years. I can truly say I love her just the way she is. On the day she was born, I did not ever think I would feel that way. Lots and lots of emotions are coming your way, but it really is going to be OK.”