When my son was first diagnosed, we tried to talk about our feelings with others. We got a lot of people trying to make us feel better about our plight or giving us advice on how to best cope. What we really needed to hear was “I don't know what’s going to happen, but I’m here with you.” We just needed someone to listen.
It is also hard for parents of children with disabilities to find support with appointments and routine tasks. There are only a few people out there who are capable of handling the structure needed for our son. This has caused limitations for us as parents, such as who we can ask to babysit.
We won’t ask someone to babysit for our kids who doesn't know how to handle our son. An evening where we’re nervously waiting for the phone to ring isn’t relaxing. It’s just the opposite. We know to ask for help only from people we know can support us.
We don’t ask for support from someone who we know won’t help us in the way that we need to be helped. Doing that can leave us lower emotionally than we were before we ever asked for help.
So much about being a parent of a child with disabilities is picking your battles. It’s also about saving your emotional energy. But it’s not just about conservation. It’s about knowing how and when to spend the limited amount of emotional energy we have. This also applies to asking for help and support.
Find the people who you know are going to support you in the way that you need to be supported. Learn how to connect with other parents and create your support system.
From the moment Camila was born, I knew she would change my world. But it was not until third grade when she made the comment “I don’t want to live anymore” that I realized things were not right.