12/29/2010

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.

13 comments:

farmwifetwo said...
This comment has been removed by the author.
farmwifetwo said...

(typo - that changed what I was trying to say)

I had someone ask me why my children were doing so well just before Xmas. Was it because I got started early?

My answer "b/c I refuse to believe they cannot learn."

That frustrates me the most. Yes, I get the fact my youngest will probably never be without some form of care. But to believe he's the sum of his IQ score and that severely autistic children should be ranked according to it so we can build institutions and lock them in it instead of teaching them survival skills - like crossing the road on their own - makes me mad.

I wrote an epic once against bill C-360. Federal funding of ABA - our dealings with that program was... ugly to be kind - and in those 21 pgs I listed where there was funding and services. My ped, the child psych and Community Living all requested to copy those pages for others. Part of you thinks "well if I did it, they should".... but at the same time... I said "yes".

I discovered where to start due to a comment made at a meeting I was at, forth hand between a couple of other people about someone else and remembered, called, got told "wrong county but here's the number you want", called "we'll be there in 2 days what time works for you". Without the Ontario Early Years Ctr and Ont Tyke Talk program.... we too would still be going in circles.

Right now.... I'd just like to get the younger fully toilet trained, not caregiver trained... How can a 9yr old child that enjoys and reads orally with ease Geronimo Stilton, has difficulty answering Wh questions, still be unable to master toiletting?? So, no, it's still not perfect... but we're good.

I had a blog - gone about 3yrs already - and I had to quit for a variety of reasons and one was the inability to vent without being slammed for being a crappy parent. It wasn't the autism parents, it was the adult autistics doing to complaining.

KWombles said...

I've experienced that, too, with Bobby; that there are limits, so we should move on, give up, on certain things. I can accept that he has limitations, but it should be for him to decide how far he can go. We've worked hard to teach him that if he really wants something bad enough, he'll work hard enough to get there. The problem becomes that he's untethered enough in time that he has no sense of urgency, nor any sense that time is passing and he still hasn't reached a goal. He's not unhappy, though, so I suppose it works out well in the end.

Yes, there's so much about our kids that just blows me away; they can do somethings so very well, and others leave me scratching my head. We have days where a particular skill is practiced, but the next day, it's like they never did it before. It makes it endlessly interesting. :-)

I think it's important to share our lives and get support; I think we ought to be able to say when a day is difficult, when we're scared, vulnerable, feeling down, and not be made to feel like a crappy parent. I just think there's a line that when it's crossed, well, it's crossed and that person needs more help than he or she is getting.

I read somethings out there that are just so raw, so over the line, that it shatters something in me. And I do understand; I've dealt with depression, and I've needed a therapist to talk with and medication to help me get back on my feet.

When I read someone who's crossed that line, I think that person needs help, needs a break, needs something more than he or she has at the given time. I don't think the person is a crappy parent, but a parent in need.

There should be a way to help them; I don't know that reading, witnessing, and offering comments is sufficient to that, that it makes the difference they need when they're down there in the pit. And I think that when there are places where all the people are in the pit, it gets really, really dark.

I think today needs to be an easy day with a sweet, sappy book where everyone gets a happy ending.

Thanks for listening, farmwifetwo. :-)

farmwifetwo said...

I had to grin at the "teach them a skill today and it's gone tomorrow". Use to drive me insane... then all of a sudden you realize they got it, that you aren't nagging about putting shoes on the right direction or tops or the fact that the word "I" is the same on pg 1 and pg 2... And wonder what they needed, what did you say yesterday that was different than the 300 days before...

Mine are so very different. Ironically, the child that "passes for normal" is the one that is high behavioural (although MUCH better than he was as a child but now with the tweens in full swing - puberty's going to be fun - NOT!!!), he's unable to entertain himself unless it's electronic or a board game or something, that needs instant gratification, that doesn't like to fiddle or figure things out - think it has a lot to do with the short-term auditory and visual recall issues that are luckily tempered by an amazing long term memory.

Whereas the younger is my fiddler. He watches, he misses little and then he does. Be very careful what you teach that child. He's dangerous online with his love of You Tube - which I personally dislike - and his ease of spelling/reading and knowledge of google... Computer time is supervised.

I've never reached being depressed. I started the blog just as we completely got rid of IBI/ABA (12mths after they started and 4mths after they officially left our house) so the younger was nearly 5. An online friend talked me into it "Lemonade made daily" blog. If I hadn't had that blog that winter, I may have very well tripped over the line. It gave me a tangible place to sort my thoughts, to see that I really was accomplishing something, that the abuses dealt to us by the IBI program really were not appropriate. So instead I simply had a very nasty case of burnout for a few months. The blog lasted about 18mths.

Unfortunately, people need to ask for help and I have found the system can be very unforgiving when you ask for it. Once burnt... I refuse to have adult respite providers in my home b/c of the disaster that was IBI/ABA. Services are so different in different areas - even neighboring counties. I have learned though I can't do it for someone else. I have been accused of being cold, that I should be more sympathetic - this was a teacher who's kids are "normal". Those that deal with it daily - my family support worker from Community Living - will tell you that only 25% of parents truly want the help given... the rest expect someone else to do it for them. Here, I simply give them her phone number and tell them to call her - nobody ever has.

Crap the garbage truck just went down the road... it's Thursday!! Yikes!! Oh well... next week :)

farmwifetwo said...

Crap it posted it, even though I didn't think it would.

KWombles said...

That too large url page struck, didn't it?

I figure if we can ever hit on what it is that clicks for our kids, we could change the world. I suspect it's neuronal connections being made that weren't there before, or myelination happening.

It is nice, though, to realize that things change, that they do progress, they do learn, they grow, even when it feels so slow in coming.

My gardens were what your blog was; I just wasn't always fortunate enough to be someplace my hands could work the earth.

Blogging's good, too, though, most days. I wish, though, that my first active experiences with the online autism world had not been through the war that Huffington Post autism related columns and Age of Autism are. I suspect most people avoid that entirely, and I would have liked that.

I don't think people in the autism community have to war against each other. I think many choose to, but I think it makes things worse rather than better, so I'm glad to see us add blogs and bloggers to the directory, and that most of what I read is supportive and sharing. I just have this bad habit of checking out those angry places.


And, yeah, I suspect you're right; far too many parents just want someone else to do the work.

We've never had respite care; I understand your reluctance to pursue that. The thought of the state intruding into our homes is scary to me, but it seems to be part of the price of asking for help from the government. We've been fortunate that right now, since we aren't seeking any services for Bobby that we just have yearly paperwork to file guardianship-wise and in relation to how we use his SSI to pay for his living expenses.

:-)

Corabelle said...

Thank you for your honesty and your post. If this comment doesnt get posted, thats ok. I just hope you read this.

Ive more then reached full burnout. somehow I keep going, everyday, I could use a break, and I know that every day it gets better. Still waiting for that magical "help" that is actualy helpful.

I love my little boy, and I dont care how hard it is. we work with him through his dificulties
(he had a stroke when he was born so he is still weak on his right side). and glory in his acomplishments. We try our best to treat him like every other child. Yes it's hard, Yes I am angry, Yes I am tired, but I'm not stopping now.

I started blogging this year as an outlet for the things that no one else understands. Being an aspie myself can make this whole situation alot more difficult for me. I have wanted to scream, quit (more then a few times) and some days I feel so alone in this, I just want to lay down and die...but despite the depression, despite how lonely it is. I keep going. Because I know that things will change, And because I wouldnt trade a min without him.

Having the blog, and reading posts from people like you gives me hope, and the courage to keep going. because however difficult it may be, I know that I am not alone, and somehow we have all managed to survive.

Having a "special" child changes your life, more then you would ever think possible..sometimes its good, and sometimes its really bad, but everyday is a blessing, and I wouldnt change it for the world.

KWombles said...

Corabelle,

Your comment means a lot. You're not alone! And, yes, I know it can be so hard, so tiring. I know that, too. ((()))

We may not always have the safety net we could use in our day-to-day lives, but we can work to provide that for each other, here. I know, some days it is a matter of taking it moment by moment, step by step.

I'm on facebook, if you'd like to friend me. Many of the bloggers on the directory are on facebook and twitter, and it's another way we provide support and friendship for each other.

I love the self-professed weirdo in your profile. :-) I think many of us in the autism community are interestingly unique characters.

farmwifetwo said...

K - feel free to delete the extra comments. I'm with you on having service providers and social workers underfoot. My FSW is neither she works for Comm Living which does the disability housing and other services. She's absolutely wonderful. I need her, she's there. I don't, she leave us alone. I never got into the Huffington/AofA stuff. My first book was the Seroussi one, and it did start us on the diet. We never viewed it as a cure, but we were desperate to stop the daily diahhrea and nightmares/terrors - which removing dairy did. I wasn't even on the net for a few more years after that.

Corabelle - my "coulda, woulda, shoulda" list is miles in length. The guilt is even longer. What is different than 9yrs ago when I started out with the elder and 2yrs later added in his younger bro is simply - time. Now it doesn't seem as overwhelming, now I understand how the system works, now I have an understanding of the issues and challenges the boys face daily and long term. Now, I have proof that it can and does get better. Perfect - NO. Better yes. Am I happy about it - no. Think autism is wonderful - no. Do I have to think these things to be a good parent - no.

I don't have to like it. I don't have to think it's fair and no I'm not upset, embarassed etc to say just that.

It is what it is and we'll manage. All I need in the end of each day, is to look myself in the mirror and say "I did my best". Could I have done better - oh yeah, I could become the therapist but right now Mom is what I am. But I won't feel guilty for not being superhuman. Been there... done that.

KWombles said...

FW2, I cleaned the comments up some. I read the Seroussi book, too, and it led us to doing the diet, too, six years ago. wow. It's hard to believe that. I thought at the time that it was helpful, but we went off of it with no regressions. It was good for helping me maintain my weight. It's been nearly two years since we went off of it and I've enjoyed gluten and casein WAY TOO much. Time to get my off my rear and get the weight off. :(

Yup, I know that guilt. It can weigh you down. At first, when we started the diet and believed it was responsible for Bobby finally learning to read, I blamed myself for not trying it sooner.

I like your approach. We don't have to be perfect; we just have to do the best we could and keep trying.

As my Lily's teacher says, tomorrow's a new day; it's all good. It really is a good attitude, each day a brand new start. :)

farmwifetwo said...

It takes me 8hrs to mow end to end across the farm on the ride-on.

Nobody bothers you... and you have a lot of time to think. Cheaper than therapy... and did I mention my FSW... she's been doing this longer than both of us and has been a wonderful sounding board.

Youngest is insisting on pj's. We're going next door to MIL's... not worth the battle. Actually he just went "bye G, bye Dad"... mmmm... maybe he and I will simply stay home.

TherExtras said...

I am terribly confused. I thought I had commented here, but don't see my comments now.

Don't have time to search, but will leave what I brought to leave:
http://kctherapist.blogspot.com/2011/01/mental-health-emergencies.html

Barbara

KWombles said...

Barbara, this piece is cross-posted at the directory; you commented on it over there. :-)