Never give up, never surrender–a way of life

So, as many of my readers have commented, I have a pretty busy life, trying to balance the day job with the writing career and still take care of a family and breathe once in awhile, too. Fortunately, as the children have grown up, their special needs have been addressed, for the most part, and don’t affect the day-to-day living situation as much as they did in the past.

That’s a huge accomplishment in my book. Two out of three of the children have overcome their ‘disabilities’ to the point where they can function alongside their peers on a day to day basis and also contribute in the home setting. The Captain is still struggling with his issues, but we encourage him in his therapeutic placement and continue to hope that he will do the same, someday.

Because so many people were asking how I can manage all these things at the same time, I’ve written a post about it for the readers/writers site The Polka Dot Banner.

I left out the part, of course, about how I do all these things because I’m a woman and a mother and we just do what we have to do. The political candidates can bellyache about all those who complain they need help from the government to keep on surviving, but I’m here to tell you that I know a whole subculture of parents of autistic and other special needs kids who bust their butts every day to keep those kids moving forward, no matter what personal sacrifices they have to make. I applaud each and every one of you. Keep on keeping on, even when it seems like no one else is on your side and you’re ready to just lay down and surrender. Don’t. It pays off.

The next day

Most often tragedies come as an event, a moment, after which things are never the same.

In my work life, I deal with these events all the time. Families that were once happy, functioning organisms come to a point where they no longer work. While the buildup may have taken days, months or years, the point where someone decides “No more” begins the end.

The same is true when someone receives a terminal diagnosis, or loses a much-needed job, or suffers the effects of a natural disaster, or loses a spouse, or parent, or child to an accident. Even that diagnosis of autism. From that day, life changes.

That day may be one that you relive again and again, trying to see where you could have done something differently, wanting desperately for life to return to the moment before it became too late.

But in my opinion, that’s not the most important day. The most important is the next day.

No matter what’s happened, or how devastating that is to you, the long-term impact depends on how you greet the morning after. If you wake up with the view that your life is now over, it very well may be.  I know people who, after their spouse died, followed them very soon thereafter, unable to forge a separate existence.

It takes a certain amount of heart, courage and determination to move past these difficult life changes. There are cancer patients who get six months to live and turn it into remission. Hurricane and flood survivors build a new life. Divorce ends one phase of your life and begins another. As the mother superior says in The Sound of Music, “When God closes a door, he opens a window.”

There is a morning after, and a new way to look at your life. Take that chance and fly out that window into what awaits.

Charles Darwin says:

“It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.”

Humans have proven over thousands of years that they can survive. Depends how you handle the next day, and the day after that. You can do it. Believe.

The road to recovery

Sometimes, in talking to people, their eyes glaze over, and I can almost hear them thinking, “Is she on to that autism thing again?”

I confess, I talk about it a lot. I talk about it to clients, many of whom face autism in their own children. I talk about it to colleagues while we’re waiting for hearings. I talk about it to my sisters when we share each others’ weeks, and it seems my tales of triumph and woe go on and on. I write about it here, and I’m grateful many of you understand and let me know.

For all I lecture about making your life about other achievements besides the raising of an autistic child, the fact remains, a family member with autism is all-encompassing. The autistic life flavors every minute of every day. We must remember to give notice to Captain Oblivious that he has a special program at school so the meltdown at a change in routine doesn’t occur. We push and push to get verbal responses out of Little Miss to every question, force her to stay engaged. We stay on top of Ditto Boy’s meds and watch all three for regression, new behaviors, bad behaviors, falling grades, violent outbursts, interaction… anything. All day. Every day. We go to work and wave them off on the bus, but we wait for the phone to ring.

Someone close to me is a recovering alcoholic, sober now for some time, and her continual vigilance on the issue of alcohol was getting on my nerves. At the holidays, she couldn’t come to the house if anyone was having a drink. She wouldn’t go out for lunch if there was a bar. She comes late for visits or leaves early because she has a meeting, and she’s always thinking about the process of recovery.

About a week ago, it dawned on me: we’re the same.

Both our lives are consumed with the awareness of continual threat; for her, that she’ll lose control of the alcohol again, for me, that something will go wrong with the children, something we should have been able to control. Alcoholics Anonymous has twelve steps to recovery; Autism Anonymous has…well. Hundreds. Most of which probably won’t work for every child, because of the diversity of symptoms and causes.

But the successful approach is the same: one day at a time, with constant attention to learning about your issues, and taking the best possible care of yourself, so you can help those who need your help. And my slightly modified version of the Serenity prayer:

God grant me the serenity to accept the child I have been given, so I can teach him what he needs to survive in our world; courage to work for change in the world so that she can be accepted; and the wisdom to know whether the child needs to be changed, or the world does.

The Things We Celebrate

Not so long ago, my daughter came home from school with a stern note from her teacher: she’d kicked a boy in the crotch in the lunch line.

We were ecstatic.

(I can hear all the parents out there cringe. Literally.)

Let me explain. The important part of the story is WHY Little Miss found it necessary to kick this boy. She did it because he was picking on her friend, a boy smaller and younger than they are, and she was defending him.

For your average student, this may not be surprising. For a child with autism to have that much empathy and take action on someone else’s behalf– amazing. Another major step in her emotional recovery.

So we gave her the standard company line on the inappropriateness of kicking her classmates. Then later we all cheered quietly. A lot.