I had just been to the OB/GYN and it was twins—what a blessing. Then, my daughter had a stroke at 28 weeks. Her brother seemed to develop normally, and at 36 weeks they were born. She went to the NICU and he went to the nursery.
When my time came to leave the hospital, my daughter stayed for a few more weeks but my son came home. It was a godsend to have him there and healthy. Having him to hold and feed helped save my sanity.
He was a great baby—not fussy, very laid-back, happy to be on his own … perhaps too comfortable. I was so busy with his sister I didn't notice as he started missing milestones.
By the time he was a toddler, I knew in my heart of hearts we were facing something more—but I was afraid to admit it to anyone. It wasn't until I took him along on a neurology visit for his sister that someone was brave enough to confront me with the truth: My son had autism. The nurse was very sweet, but also very direct.
It was time to stop making allowances and start getting the help he needed. Getting the diagnosis was a turning point for us. I could no longer deny what was happening with my son. That word Autism —and all that it meant—terrified me. And even if I didn't understand it, it was reality. It became part of our life.
Confirming a diagnosis can be scary. It can be a truth you want to hide from. It can also be the truth that helps you accept that you and your child need help beyond the constant reassurances that everything will be fine.
It is a label that will change everything—from school to doctor visits to how the people in your life treat you. However, at the end of the day it is just that—a label. Your child is still your child. They are not that label.
Once you get a diagnosis, you can work every day with your child to escape the restrictions that the label tries to place on them. Remember, you know your child better than anyone. You can accept the label but embrace your child.
For information on where to start once you get a diagnosis, go to Where Do I Start on this website.
When it comes to your child and their medical needs, there is no such thing as a dumb question. Here’s how I think about asking questions in medical settings as a parent of a child with a disability and a nurse.
Categories: Diagnosis & Health Care