Parents of special needs children face stress and anxiety daily. There’s really no way around it. From the moment we realize our children are different or are diagnosed a wall of tension crashes down on us.
Life becomes filled with questions of the unknown. What does this diagnosis mean for my child? Will he ever have a semblance of a normal life? Will she have meaningful friendships? Will he ever be able to talk? Will she ever walk? Who will take care of him if something ever happens to me? Will she ever be able to take care of herself? What if I fail him by not advocating for him enough? What if I can’t protect her from harm? What if he gets out of the house and we can’t find him? Will she make it through the surgeries she needs? Will I be able to do all the things he needs me to do? How are we going to pay for all the services she requires? Will he be taken advantage of?
The list goes on and on.
Every day is filled with anxiety. From the moment our children wake up and even into their sleeping hours, we worry.
There are times that we hover over them while they try something new. There are times that we fight with them to try something new. There are times that we fight with them to keep them from harming themselves. There are times that we check on them at night to make sure they are still breathing.
When in a new place we must be aware of everything that is going on around us and instinctively look for dangers to our children. We monitor exits to make sure our children don’t escape the safety of a designated area. We watch how our children interact with other people so that we can step in if they become too grabby or aggressive.
We worry about judgement from parents of “normal” children. We see the stares and sometimes the disdainful looks. We worry that you think we are less than because our children have special needs and even worse, we worry that you think the same of our children. We know that there is no possible way you could understand what it’s like for us and we feel alienated from you. It can feel like living on a totally different planet sometimes.
We are in a constant state of hypervigilance – trying to be ahead of whatever may happen that could threaten our child’s wellbeing. Because of this, we are exhausted most of the time. Our kids will more than likely never grow out of their condition. We will still be their parents when they are beyond their teenage years. It wears on us.
We hear things like, “I don’t know how you do it” and don’t want to admit that there are times when we aren’t as good at it as we think we should be. The pressure on us to do everything just right is immense. The stakes are higher for us. We keep on pushing forward though. There is no choice because we love our special babies.
Thankfully, there are delights to special needs parenting that we get to enjoy that those with typical children don’t get to experience. They will never understand just how special and heart-melting a simple smile or a hug from our kids can be. They will never know the bliss of watching our children with Cerebral Palsy or hypotonia take their first steps. They will never know just how much our heart can bubble over when our children with speech delays say, “Mama” for the first time. They will never understand the happiness we get when our children accomplish something that the typical child can do seemingly instinctively.
These triumphs do not take away the stress, but they sure make our lives worth the struggle. Taking care of a special needs child is challenging even on the best of days but our children are worth dealing with whatever life throws at us.