special needs dad chronicles

honesty, hope and healing for Special Needs Dads and those on their journey

Brave New World

I have mentioned before, everything has changed. Don’t despair. You will make it. Everything is not lost, but everything has changed. How you eat. When you sleep. If you sleep. How you vacation. Your job. Your priorities. Everything.

An example is the familiar cookout. Old friends coming together over drinks. The jokes used and reused are still funny, but comfortable and comforting, like a pair of old slippers. The thick plumes of charcoal smoke shooting from grills. Children laughing and splashing in the pool. You can find yourself sinking back into your old life.

And you might try it once, but, ultimately you can’t go again without taking your new self with you.

You can’t go, because you can’t enjoy yourself. You find it harder to relate. The base of sharing is nil.

When your 8-year-old is not toilet trained. When you have to keep him strapped in a wheelchair so he won’t strike out or flail at another kid. When you have to constantly monitor him so he won’t hit his brother for the 1,000th time and you have to counsel that brother when he says he hates his brother because he has special needs, well, that makes it hard to hold your solo cup and nibble at your burger and engage in talk on football, or work or join in the last discussion on technology or pop culture.

Your world is not completely centered around your special needs child, but it is affected. Easy jocularity, complaints of having to change a one-year-old diapers and hearing about how someone loves Ricky Gervais (despite his disdain and condescension of the special needs population), makes it hard to engage or relax. You feel the ebb and flow of the conversation float over you and see yourself stuck on a sand spit watching it all. You can still fake a laugh, extend a hand and grab a cold one, but it is all a joke. And not a funny one. Because the joke is the event when everything with your child seems so terrible and out of place and the joke is how you feel inside which has the capacity to make you feel like a joke.

Only at the end of the night, when you are home on the couch and your family is in bed and the house is quiet can you relax. With the sound of stale laughter still in your ears, you swear to never do that again as you reach for solace in the bottom of a bottle.

Impotence in the face of adversity…and yet…

I grew up as a Preacher’s Son moving from city to city every few years and that in itself is a book I wrote that might see the light of one day.

The one thing I learned – rather harshly – was I could fight my way through anything. Enemies. Obstacles. You name it. I could use my will, my mind, talent, hard work and self-discipline and could carve a niche, find my place, raise myself up from the constant new kid status and defend my insecurities.

In junior high and for a few years in high school, it was basketball. I could channel my anger onto an asphalt court and use hours upon hours tossing a worn ball to a tired hoop to make something of myself. Eventually, I honed my game enough to find acceptance on the playground courts and earn a spot on the roster at two high schools.

When I quit sports, I began playing guitar. Again, if I was frustrated, I could practice and practice and, over time through blistered fingers, write songs, learn scales and, eventually, turn up the distortion and play loud performing in venues. Again, I could channel that anger or frustration constructively, instead of destructively. Music, like basketball, became my catharsis, a place to take anger, frustration and depression and turn it into something else. And, by it, making – in my mind – something of myself.

I used those same ideals through college when I felt challenged academically. I used them at work to climb my way up the ladder. I might fall down – heck I fell down many times –   but I would get up and I would eventually triumph. That was the chip on my shoulder. A chip, but also a motivation, a defense against my seen enemies and my unseen ghosts of the pasts and as a motivation it worked.

Through time, I honed off the hard edges of the chip. Through Grace and Love given to me by God, through lessons taught by my wife and by friends, I wore off many of the jagged edges, but the impetus, the genesis of who I am in regard to this ‘fighter mentality’ was born 30 years ago and had become as much a part of the fabric of my being as the color of my eyes.

Then A was born

For the first time in my life. Ever. I could not change the situation. I could not work hard enough to replace the part of his chromosome that was missing. I could not outsmart it. I could not outthink it. I could not outwork it (I say that again to emphasize the mere frustration of it) I could not out-anything it. At the time, I felt I could not do anything to help the situation.

Self-defeat. Deflation. Depression. And the main word that surfaced in my vocabulary for the first time in my life:   Impotent.

It was the day that I learned that I had nothing to give in many ways, and, at the same time, I had to give all I had to everything outside of myself to make the situation better.

It was the day that I learned that faith went to unimaginable depths and that talk of fate and destiny take on a different shade of meaning when they cease to be abstract.

It was the day I decided to work harder than ever before at what I could control, but at the same time I had no idea what I controlled anymore.

It was the new beginning

The framework of my life had been altered irrevocably. I had been transported to not only a different planet, but a different solar system where the very reality of physics and gravity had shifted under my feet.

I suppose it was the day faith died…but faith was reborn…even a seedling in a pile of was a day when things became more real…Politics, sports and entertainment sank into beyond paltry distraction…everything changed…. Time to get to work…it was time to figure out what I could change….

Find your outlet

I cannot stress enough how important it is to find a healthy outlet. An outlet for your anger, frustration. An outlet for a way to not only channel these swells of emotions, but also to find an outlet for escape. Pure escapism in itself is tempting. A quick drink, a TV binge, the desire to plunge into any easy sedative to ease the stress and pain is always there. But I recommend something stronger. More constructive.

Like what? Exercise for example is a great fighter against depression. You’ve got these emotions and the best thing one can do is channel them. I find that exercise not only provides a good way to release any pent up emotions, but, of course, it is healthy as well.

Art is another option. Yeah, I know not everyone is an artist per se. (I love making music and it saves my life some days). But even flinging paint against a canvas and then setting it on fire is better than simmering in unresolved emotion. Art is wide open to interpretation. And that leads me to landscaping. Hate gardening? Okay. Well then find some trees that need cutting down. And use an old axe. And don’t be afraid to unleash a yelp when you fell the tree. Trust me, you will feel better for it and the neighbors can get over it.

There are tons of other outlets that I won’t cover, but my point is find something constructive for a distraction, a release, an escape. Hiking. Golf. Woodworking. Otherwise, the temptation is to sit in your despairing state or, worse, turn to quicker and easier means of pleasure to ease the pain on this journey.

Get to work, get to work

You can change. You can’t change the world.

In regard to my post on feeling impotent in the honesty section, there is a difference between feeling and reality. And the fact of the matter is, after time, you will need to act.

You can’t add a chromosome or work overtime to fix a developmental delay, but you can learn all you can about your child’s issue.

You can read all you can about advocacy. You can become a bulldog in fighting to get your child everything he or she needs in terms of therapy and care and medicine.

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