A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON TEN: A Look at Chronic Grief

OBJECTIVE: Being alert to signs of grief and chart your ups and downs for a week
READINGS: “After the Tears: Parents Talk About Raising a Child with a Disability”, Robin Simons.
Not a new book but a classic that addresses many issues, including chronic grief.

Grief is a very sneaky creature. We think about the term “grief” when someone dies. Grief is equated with mourning, with deep sorrow. When someone dies, the intense grief passes and then something will trigger a memory or a thought of the missing person.
With a child with a disability, there is a kind of death – the loss of the “typical” child. Maybe the loss of a child we had imagined; one who could play and socialize with ease, have lots of friends gathering at the house, converse with ease and throw a rare temper tantrum.

That sneaky creature called “Grief” lurks somewhere deep down inside and wells up at the least expected times. The trigger for grief to re-emerge could be a song, it could be someone we see on the street, it could be a scene in a movie.

The grief is a reminder that our lives and that of our child/children are not the way we had planned and hoped. My belief is that I can and should allow myself moments of despair. I think in order to move on to the next challenge, you have to go straight through the grief. There is no going around it. Cut through it, move through it, acknowledge it or it will bubble up more often.

Certainly life passages and rituals trigger sadness. And there are so many, once we start thinking about it:

Entering kindergarten
Riding the school bus
Each and every transition to another level or grade
Driver’s license
Prom
High school graduation
Religious milestones such as Confirmation, Bar or Bat Mitzvah, Communion
Looking at colleges with a sibling…And on and on and on…

And what about most days when grief is not surfacing?

I can only speak about my life. Each of you could write your own “war stories.” For me the hardest aspects of daily life are the following:
Unpredictability. Some days he seems to be alert and attentive and cooperative; the next day for no apparent reason- or the next hour perhaps, the “window” that allows us to connect closes shut- or should I say slams shut, in his case, as he can be very loud.
Moodiness. You will see more than the adolescent garden-variety.
Lack of self-motivation and inability to self-organize, initiate and plan. My son is unable to make any coherence out of his life. Each event or experience is in isolation. I feel as though we are on a never-ending roller coaster. We go up and down over and over again.

But the very best and most constant and delightful aspect of life in the trenches is his sense of humor. Humor often works with us to deflate anger. For a young man with a social communication disorder and with what I suspect is chaos in his brain, often he comes out with the funniest and wittiest statements.

I have learned the hard way that I cannot meet his fire with fire. The argument –whatever it may be - will escalate on his end. I try to use a calm voice and repeat myself. I give him plenty of space. Like any young man his age, he does not want advice or interference from his parents. The only problem is, unlike typical young adults his age, he really does need it. But we realize that there is little more that can be learned from us. He needs to be more out in the world, learning with support and with peers. Where could this happen? I don’t have the answer right now… In fact, there are no easy answers.