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Wednesday, December 29, 2010

Lines: Drawing Them, Stepping Over Them, Obliterating Them

Community is important; all too often in our lives as special needs parents, we can and are isolated. We are left to our own devices; we are given inadequate guidance, advice, or information regarding our children and their issues. We don't know where to turn and we don't know who to turn to.

Back when our journey began with our son, there was barely an internet; there was hardly any chatter on autism. I've written about those times: the bad books, the bad shrinks, the bad times, all around. It wasn't easy. There were years of fractured days and splintered nights, times I felt like I was barely holding on, and that no one really understood. And there was no help, no break, little hope. It was not good.

So I get it. I do. I have the utmost compassion and empathy for those new parents struggling with this bewildering diagnosis, their child's staggering needs, the confusion, the isolation, the sheer exhaustion. I get the fear. I get the despair. I can close my eyes and be 22 again, with an infant son who screamed unless he was nursing, to be 25 again and have a preschooler who was nonverbal, still in diapers, and preferably naked. I can close my eyes and be 30 and holding my nine year old son in his hospital bed, after his stroke, his right side paralyzed, his speech gone. I remember those months after the stroke when he had to learn it all over again, when we were once again cleaning his bowel movements off the floor and wherever else he cared to go.  I get it.

I get it. I do. It can be incredibly draining to parent children with autism and other neurological disorders. We're ill-equipped to think of ourselves as caregivers past a certain point in our children's lives, and we are often left with no community support, with no respite care, with no one but ourselves to work with our children. And when we have multiple children, the demands increase, especially when each child has an neurological condition. It's daunting, overwhelming, and it can feel like there will never be a light at the end of the tunnel.

And we need to vent. We need a safe place to let it out, our pain, our fear, our frustration, our exhaustion. We need desperately to know we are not alone.

I really do get it. And I get when you are at the bottom of the pit, it's impossible to think there's any other place but the pit. You think it will never get better. You can't remember a time different, and it's impossible for you to imagine how it will ever improve.

And as long as you are in that pit, isolated, alone, and certain in your convictions that it won't get better, it won't.

You may not have put yourself in that pit, but you're there now. And the only person who's going to get you out is you. YOU. Friends can be lined up along the pit, holding their hands down to you, throwing you lifeline after lifeline, but if you don't reach up and grab, you will stay in the pit.

We each of us draw lines, boundaries, that we believe we will not cross until we've crossed them. We may not realize until it's way too late that we've smashed these lines we've drawn, obliterated them out of existence.

We can and should be there for each other, support each other, and we should be able to express when we are in despair, when we are broken, when we need some help.

We must learn to ask for help when we need it, and we need, even as we are mired in that pit, that wasteland that we think goes on forever, to realize that our actions in that pit will follow us out and into the world and into our children's lives.

Our pain does not give us license to hurt or abuse our children. It does not give us license to degrade them or dehumanize them.  These are not lines we can cross.

Our children depend on us, need us, demand the better angels of our nature. We are not perfect and we will fail them, but we can not for their sakes or our own afford to fail them when it comes to respecting their innate value and dignity.

I don't know what the answer is, how to respond, what to say, when I've seen that line obliterated. It gives me tremendous pause. But let me suggest this: if all you see is pain and the pit when you see your child, you've walked up to that line and started stepping across it. It's time you reached out and got some help.

7 comments:

TherExtras said...

I was thinking about Emily's post today - her descriptions of how her son is literal in his thinking. Some adults live in literal-land - more than we might think. I suspect some (if not many) parents might need more than the euphemistic 'lines' and 'pits'. Barbara

KWombles said...

Barbara,

Yes, I think you're probably right about the literal thinking. I'm not sure how to address that, though, without making the piece and the point entirely too raw. And if I did, I'm not sure it would help.

I miss the sense of community I grew up with, the one where food was brought, casserole after casserole, where you sat with the grieving. We can give each other virtual community, but if we cannot find people in our immediate communities, I'm not sure that those in greatest need will get what they need. In person, we can understand more of the situation and more of what's needed; we can act.

We need both this virtual, world-wide community and the real, immediate community, but it's become harder to ask for help, easier to remain isolated within our own homes.

I'm hoping that can change.

Hah, weird humor that I have, we could have a club, closed from the public, The Pit Stop, where folks who are on the edge can come to talk and those who've been there can lend an ear. Hmmm.

Bulldogma said...

I want to join the club! LOL! This holiday season I found myself very much at the end of my rope. I would never for all the money in the world, hurt one of my children... but I did run away from home for a day, leaving the kids with my husband.

The problem I have had is finding someone who I can ask for help. We're on the waiting list to receive respite care so I can get away every now and again, but my own parents won't take my daughter with Aspergers (and other issues) for more than a short time... and only rarely.

Yes - we need a club!

KWombles said...

I don't blame you for running away for a day! :-) Next week, the girls will go back to school, and my son will go back to the day center, so I'll have the three days he's at the center to regroup from the last two weeks. We even got lucky and my husband managed to get next week off. I may sleep the entire time!

We do need a club that's closed to public viewing. Facebook, yahoo or google, though?

TherExtras said...

This past year I have left a comment more-than-a-few-times to the effect of find.help.close. No way can I discern a venting post from someone who is at the edge of a pit just from reading a post.

I do think it is possible to give a recognizable cue (or 2) in a post - something that might literally help someone to know when to seek help. There are probably public ed sites that give screening questions for depression, and suicide prevention (like telephone help lines).

Garnering a sense of community is a worthy suggestion. People who have help from other people tend to feel better. I know this is daring, but SOME people experience a sense of community through a church congregation. And some don't.

A gathering of people who have similar experiences can quickly know how to support one another. But gathering that group (Pit Club) is yet another challenge, eh?

Lately I have been struck by the passion some people have for hobbies - expressed through commitment to a hobby 'club'. Here are some that I have observed lately: genealogy, RVing, fishing, hunting, miniature trains, stamp collecting, gardening. Adults on the spectrum might find social homes in a hobby club. Just saying.

Thanks for letting me go on here.
Barbara

KWombles said...

Barbara,

Go on anytime!

I think church communities can be tremendously helpful for many. We've got a blogger on the directory who writes at http://theinclusivechurch.wordpress.com/.

Hobbies are a great idea, too. I think that many parents close down and focus all their attention on autism and treatments and don't give themselves permission to veg and do something for themselves.

And you're right, perhaps some posts on specific warning signs and some suggestions about how to seek help or decompress would be helpful.

:-)

KWombles said...

http://kctherapist.blogspot.com/2011/01/mental-health-emergencies.html --courtesy Barbara http://www.therextras.com/

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