MG4D Parenting a Special Needs Child Part 2

Dear Friends,

The Beginning...

While we are all different in the details of our personalities, how we approach things, what we like and what we dislike, there are common things among us that we share, and often on deep levels. When you strip away the lines and walls that divide human beings, we find ourselves on a level playing field where we all are pretty much looking for the same things. We need to be sustained through air, water and food. Our human bodies must be cared for, and our minds seek to solve the problems that bring discomfort or pain.

One of those threats to our well-being is fear. If you gather in a room filled with parents of special needs, disabled, and challenged children and ask them what their first reactions were to learning their child was affected, you hear a room full of different answers. Some are very angry. Some are heartbroken and tears easily flow. Some are determined to make the best out of a very hard situation. Some express exhaustion and an inability to feel they can deal with anything more. I've heard people say that their faith has been strengthened and they thank God for getting them through the difficult days. I've heard others express a rage toward God and a determination to put belief aside. There are those who will search the ends of the earth for help, information and understanding for their child. And then there are those who just want to go home, close the door and be alone. That's just a start, ask twelve people and it's pretty certain you will hear close to twelve differing responses.

In talking to special needs parents there is one common thread that seems to come out in every conversation I can recall, and that is fear. Among many initial reactions to a diagnosis on your child, there is most often the presence of fear. We humans are no strangers to fear, and it comes on a multitude of levels. And most often for parents of a special needs child fear presents a growing, living list of unanswerable questions:

What does this mean for my child?

What is going to happen to my family?

What is going to happen to me?

How will I cope with the demands on me?

How will I pay for all of this?

How can I work and pay bills and take care of my child at the same time?

What will my friends, family and neighbors say?

Will my marriage survive this?

If I am single, would anyone even want to marry me now?

What happens next?

We fear the unknown, because no matter what we try to do we can't see that far ahead in any situation. I've kind of self-concluded that people who say they “fear nothing” are either delusional or have nothing to fear. Victor Hugo remarked that “Courage is not the absence of fear, it is the mastery of it.” When each of us feels fear, we look for ways to solve it. We want to escape those things that cause us fear, but there are things in life we cannot escape. A diagnoses on our child is not a momentary thing, we will not wake up tomorrow morning to discover it was all a bad dream. We will not reach a moment when we can sigh and say, “the situation is over.” Our lives are irrevocably changed from that moment on. And yes, we do fear what is ahead for us, and how we will get through it.

Is it fair to put us all in the same boat, and say that fear has such a strong impact on us? I mean, is it really fair to say that a parent who has an autistic child feels similarly to a parent whose child has cerebral palsy? From my own experiences as a special needs parent and the many parents I've talk to, I would say “yes.” While dynamics change and circumstances are unique and individual, in the beginning we are all just people on that level playing field until we get the game change. From that moment on everything is different and we have to wonder what comes next, and fear becomes our regular companion.

Understanding that we all fear unites us as people, it opens the door for deeper communication and not everyone wants to admit to fear, and that's ok. I wouldn't argue that, ever. But I do think it's safe to conclude that most of us do fear what we cannot control, and we fear the unknown that we cannot see. So among the many things that special needs parents face in the beginning, fear really is a very common thread.

I wrote this essay with these purposes in mind:

– It's okay to feel fear, most of us do, you are not weak and you are not failing when fear hits you.

–  Understanding that fear is common to us all allows for healthy support and encouragement.

– Knowing our friends or family members going through the beginning of a diagnosis may be struggling with their fears enables us to be supportive and understanding.

–We are not defined by what we fear, it is only a small piece of the picture, it does not have to overwhelm us.

Are you a parent of a child with special needs? What is something you deal with as you parent your child? We invite you to leave me a comment here.

My Best,

Brian Wulf