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special needs dad chronicles

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

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SURVIVING

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.

 

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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