Small Victories - Listening to Adult Preemies
Mary Lou Dickerson gives advice to parents of preemie children, based on interviews with adult preemies.
I've always been interested in prematurity; I was preemie myself and my daughter was also born premature. In my book, Small Victories, I wanted readers to hear the voices of preemies who are now adults so I interviewed as many as possible. This newer generation is more apt to have multiple disabilities, and less vision loss. So the challenges are somewhat different. However, it is important to learn from the lessons of adult preemies who have gone before.
What I would tell preemie parents of today is that they are not alone. Other parents out there are struggling with the same issues. They can also learn about resources they can take advantage of. In the book, each adults preemie gives parents advice. They can listen to the words of the adult preemies and draw their own lessons
When you are in the first few months after your child is born - be assertive. Consider yourself part of the medical team along with the doctors and nurses and gather as much information as possible.
One of your biggest tasks is breaking down your own isolation as your child starts to mature. There are are support groups out there, take advantage of that.
If your child has any disabilities, learn as much about these disabilities as possible. If you can find older children or even adults who have these disabilities who can share this with your child, that can help as well.
I would say that your expectations for your child are incredibly important in shaping how well your child will do. So many of the people in the book talked about their parents expecting them to go to college, even if they had some pretty serious disabilities. They made made the assumption they would go to college and pushed themselves. For the issue of main-streaming versus institutions, if the resources are there, main-streaming is the preferable choice. It helps to find something that they can excel at and feel good about, they can cling to this while striving for independence. Even when things seem bleak, they return to this success.
An overriding theme from the interviews is to treat your child as normally as possible rather than being overly protective. Being overly protective can be a real disservice to your child. Lastly, take care of yourself. It is important, but its a hard lesson, especially for moms.