When my son, Adam, was born at 35 weeks into my pregnancy with a rare genetic disorder, my husband and I knew life would be different. Over the years, I’ve learned a lot of lessons that I hope can help you.

  • Ask lots of questions. When I think back to when Adam was born more than 16 years ago, there were so many questions my husband and I had. The first was “why us?” While I felt overwhelmed, I learned it was important to talk to my child’s doctors. I asked them to explain Adam’s condition in words I could understand.
  • Find resources that may help your child. At Children’s Hospital of Wisconsin, Adam’s nurse told us to apply for every program we could. This was a lot to tackle. While he recovered from surgery, I spent time learning about local and state resources to help get his future care in place.We applied for the Katie Beckett Program which provided extra insurance so we wouldn’t go into debt. The Family Support Program helped with items that insurance wouldn’t pay for. Birth to 3 made it possible for Adam to get therapies at home.
  • Connect with other parents in person or online. I started a local support group for parents like me shortly after my son was born. Without words of encouragement from other parents and professionals, we may not be where we are today. Today, parents are connecting online through chat rooms, Facebook, Meetup.com, Listservs and more. Parent to Parent of Wisconsin even can match you with a parent who has walked in your shoes.
  • Share your knowledge. Today, I work at Children’s Hospital of Wisconsin. I help connect parents of children with special health care needs to helpful resources. You don’t have to have a job like mine to help people, though. Think outside the box. Start a support group. Have coffee with a new parent of a child with special health care needs. Or, share what you’ve learned about being a parent of a child with special health care needs by leaving a comment below.

~ Meg Steimle, outreach specialist, Southeast Center for Children and Youth with Special Health Care Needs

The Southeast Center for Children and Youth with Special Health Care Needs is located in The Daniel M. Soref Family Resource Center at Children’s Hospital of Wisconsin.


4 things to do if you have a child with special health care needs — 3 Comments

  1. The biggest thing I have learned about my raising my son who was born with a rare heart condition is that we need to look at the accomplishments he has made and not focus on wha he isn’t doing. In the beginning I was so focused on what he should be doing rather than what he was doing. I was very stressed and I know this was why.

  2. You are right Jaimie. We need to remember to enjoy their growing up and the great things they CAN do. Those small or big gains in development or that bright smile from your child makes life so much happier.

  3. Pingback: 4 Things to Do if You Have a Child with Special Health Care Needs | NICU Family Support Blog