Learning that your child has a chronic medical condition or will have special needs for life is one the scariest experiences in the world. I will never forget the days I received the genetic test results confirming the diagnosis of Down syndrome for both of my kids.
I opened the envelope while repeating in my head the prayer that I had been reciting over and over for the two weeks prior. It’s a simple piece of paper, but in that moment, it seems to be the heaviest thing you have ever held in your hands. There´s no patience for reading word by word as you know that the only important word that you want to see is “negative”, although in my case, I saw “positive” both times.
At that moment, you don’t think about how different your child may look or be from their peers in the future, you’ll think about those things later. Instead, you contemplate all the possible medical challenges that may come with the diagnosis, and you start freaking out about the great responsibilities that it implies and how on earth you’re going to take care of this little person who will need you more than anything.
After receiving those results, life goes on, of course, and you realize that there are only two things to do when raising a child with special needs:
- WORK ON PREVENTION
- FACE CHALLENGES AND TAKE IMMEDIATE ACTION
Prevention is an incredible asset and it’s all about acknowledging your child’s needs for special, additional attention. Prevention means teamwork from your family, your pediatrician, and the right specialists. It means you don’t want your child to be visiting the doctor because he’s sick. Instead, you want the team to follow his growth closely and be aware of his weaknesses in order to treat them timely before they become a problem requiring additional, potentially invasive, medical attention.
Prevention includes the bad experience of discovering things we would like to avoid sometimes. Many times we want to believe that our child only has a cold, or that the cough is going to get better soon when, in reality, we’re facing something more serious. Acknowledging the challenges means learning from the experience to know how our kids react to certain circumstances and what to do in those cases. Immediate action makes a big difference and can help us avoid tough times that involve hospitalizations and lot of medications.
Maintaining good health is one of the most important parts of raising a child, especially one with disability. Your child needs to be healthy to learn well and take full advantage of the world that surrounds him.
It’s not only the big medical concerns that are important, some stuff that may look insignificant may greatly affect a child´s development. Small things, requiring minimal intervention (prompting to drink more water or having an additional hearing test done that caters to individuals with special needs, for example) can help our children greatly. That´s why it is so important to go an extra step, truly listen to and observe our child, and don´t give up until we are able to identify the problem and correct it. Many times a simple intervention has the power of changing the future of a child. Wearing glasses or getting ear tubes, for example, can open up a whole new sensory experience for a child who was limited in that way.
This is how I handle the medical needs of my kids. I prevent as much as possible, not allowing their already identified issues to grow into full-blown medical problems. Not only do they have a good life, but I feel proud and happy to be an important part of their wellness. As a family, we take good care of each other’s health, happiness, and overall wellbeing because, special needs or not, isn’t that the way it’s supposed to be?