Marching to the Beat of a Different Drummer

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As a parent of four young adults- two faced with special life challenges, I’m often presented with rude comments on how I should handle certain situations.

Let me explain and hopefully open your eyes to a corner of the world that you’ve probably never visited.

An exercise in enlightenment, understanding and vast open-mindedness.

Chronological age is not the only indicator of where and what a person should be doing in regards to life’s milestones. This seems obvious, but trust me, it is not.

Many young adults are affected by invisible conditions which prevent them from reaching their full potential and may also make them appear lazy to the rest of the world, putting even more pressure on their already fragile self esteem.

Invisible condition (my definition)- a condition/disorder that is not necessarily obvious to the general public and may not even be detectable in a first hand social interaction with said individual. The person may appear completely normal. However, underlying condition(s) may be absolutely crippling thus preventing this person from being anything from marginally functional to ultimately meeting their full potential.

Examples- ADHD, autistic spectrum disorders, depression, anxiety, bipolar, post traumatic stress disorder, dot. dot. dot.

I live with two excellent examples of said invisible conditions, which in their cases are (at the present time) pretty debilitating. We get through life ONE DAY AT A TIME.

I love my SPECIAL children with all my heart.

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My children, whom I happen to know are misunderstood by society, certain close friends and family members, whom I will stand up for until my last dying breath and probably continue to protect in the afterlife.

Hell yeah.

It goes something like this-

My 19 year old son has pretty profound ADHD. *Note- There’s the ADHD where you take a pill and <<poof>> life is good, functional and manageable and there’s the ADHD where every waking moment is a challenge. I mention this to make you aware that ADHD is not the same on any two people. It’s a spectrum disorder. Your nephews ADHD may be a completely different animal than my sons ADHD. On a similar note, the higher your chronological age, the higher societies expectations become of you, making coping often more challenging as time passes.

KNOW that, APPRECIATE that and most importantly, RESPECT that.

As it rolled out for my guy, he did not grow out of his ADHD, nor did he learn to completely compensate. Every day is a challenge. He has chosen not to take meds, which at age 19 is his prerogative. My feeling is that he needs to manage his life in a way that feels right for HIM.

It’s a slow steady process in which there is no deadline.

I stand supportive pretty much… forever.

In addition, this same adult-child falls on the autistic spectrum. Aspergers presents an infinite number of social hurdles every single day. Add sensory integration dysfunction- another spectrum type condition and you amplify the same challenges by like ten fold.

Despite starting sensory integration therapy at the young age of five, being in sync with the outside world continues to be an every day struggle. Everybody’s brain is different. One of his major sensory challenges include a struggle with proprioception and spatial relationships- knowing how hard to press the gas/brake pedal in a car or how far to turn the steering wheel.

An example of how ordinary tasks that may almost seem second nature for most, may not in fact be simple for everyone.

This is REAL life stuff.

*For anything and everything related to sensory integration, check out the book “The Out of Sync Child” by Carol Kranowicz. Excellent read. My sister and I actually attended one of her conferences awhile back and she was lucky enough to be chosen to be part of the human sandwich exercise. I think she was the lettuce.. which figures because she’s teeny. I would’ve definitely been like the quarter pound burger.

Anyway, if you’ve absorbed the significance of the above challenges, you will most likely be able to better appreciate that things like driving a car, attending college and working are equivalent to an obstacle course within an obstacle course for some young adults.

On a completely different, but equally significant note, the oldest love of my life is afflicted by severe anxiety and panic attacks. No, we didn’t break her, nor did she ask for this or bring it on herself. She’s smart, beautiful and exceptionally talented, but doesn’t accept or acknowledge any of these things.

The current plan is to chip away at the anxiety, so that we may eventually step up the ladder rung to higher level challenges like college course work, getting a drivers license, maintaining a job and nurturing close relationships.

One step at a time.

This is not the portrait of a lazy person. This is a person who is struggling.

So, when you add your two cents that sounds something like- “You drive them to college??? They need to get jobs!! If you don’t force them to take responsibility they’ll never learn… use TOUGH LOVE or I would never tolerate THAT from adult children blah, blah, blah… ” you most likely have no idea what you’re dealing with and/or how unfitting your unsolicited advice actually is.

Let me say to you, in addition to treating those you love with much needed understanding, compassion and respect, first and foremost and even if it means simply just being there, a parental figure or caregiver must most importantly do no harm.

Let that sink in.

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6 thoughts on “Marching to the Beat of a Different Drummer

  1. Leaving comment here as well.

    Comment: I understand some of what you are going through. Our oldest son will likely need a highly structured environment for the rest of his life. In his case we don’t get a lot of push back from people who meet him; his autism is pretty evident and most people are immediately aware that something is not quite NT about him. But we have lots of friends with children or family who fall into the category of struggling with how to help and guide while still fending off the non-comprehension. It’s tough for both parents and children, but compassion is a great ingredient for coping, and moving forward. Best of luck with your children!!! Thanks for linking up with FTSF!

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  4. Thank you so much for your comment and for spreading the word. As a special ed teacher you are appreciated more than you will ever know. Hats off to you for all that you do. You are in fact… an earthly guardian angel to MANY.

    Like

  5. Reblogged this on mommytrainingwheels and commented:
    Being a special ed. teacher, this post strikes close to home. I think most people fail to recognize that just because a disability is not apparent, doesn’t mean that it isn’t real or challenging to those who live with it. It’s important to get the word out: don’t judge a book by its cover. Seriously. Just. Don’t.

    Like

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