A Tricky Job Indeed: Raising A Son With Special Needs

Willie does best with a regular, steady, predictable routine. Same time everyday to wake, eat, go to school, work, eat, and go to sleep. He is not alone as most kiddos with Special Needs thrive and require this routine.

But Willie craves to go out to dinner, to go on adventures, to join us on our family vacations. After 21 years of parenting him, I am still torn as the shrapnel of such experiences tears my heart apart. But as parents, we must allow him to venture out of his sameness, his routine, his predictability. It is our job to prepare him for the triggers that may just set him over the edge. It is our job to absorb the fallout of his lost emotional control. It is our job to take his hand and lead him through this scary yet exciting path of adventure. It is quite a tricky role to fulfill: parenting the Special Needs kiddo/adult.

On our most recent family vacation, Willie embraced all the dinners out, all the shopping trips, all the wilderness jaunts, but of course had his dark moments as well.  He suffered from the "after-remorse" that accompanies each temper tantrum. He is emotionally intelligent enough to know he has acted like a jerk. He feels guilty for all the names spoken, the yelling, the punches thrown. He absorbs these behaviors into his self-esteem and ends up feeling badly about himself in a deep way.

And of course, these darker episodes resonate and remain with our whole family.  All 5 of us have developed ways to cope, to continue, to normalize a very abnormal situation. But we all wear our scars. As parents, this is our job. But what about the siblings? How OK is it to continually expose them to Willie's meltdowns with all their implications?

So we continue to weigh each routine divergence, whether it be a dinner out or a family vacation. This is a heavy and complicated decision. The trickiest part is that the further you are away from a recent meltdown, the more positive and possible another one of these adventures seems.  And of course, when you have your other kids' well-beings in mind, it is an impossible decision.

For now, the May family trip for the cousin's Bar Mitzvah does not include Willie. We all sigh a breath of relief. Except, of course me and my husband, who after the breath, contemplate all the opportunities lost for Willie. A tricky job indeed.