LOST

That’s what I’ve been watching the past week ever since I discovered all of the seasons are now available online. I’ve watched a few episodes before but never really got hooked. I’m kind of glad I didn’t because now I can just watch as many consecutive episodes as I want without having to wait! It’s a lot like watching the entire Lord of the Rings trilogy (extended version) when you didn’t see the original movies. This being made even more true by the presence of Dominic Monaghan a former hobbit of said trilogy. I’m almost through season 2!

But it also reflects where we are the past few days. Thanks for all of the comments and encouragement, and I expected a lot of positive feedback given the fact that most of you have been beating me over head with a counseling club the past couple of years. Arwyn is willing to go, this is true and good. But we’re still not really going anywhere. I looked at some old journals and found that this business of being marooned dates back to at least 1999! Which happens to coincide with the birth of our first child.

Desmond asked for some special needs child backstory. No, this has not been a theme of this blog although it has been a major theme for Arwyn’s emotional storyline. I actually do have a blog out there that deals with autism and disabilities (she knows about that one but doesn’t read it) but my personal story as a parent still is not a major theme there. It’s sort of a secondary story. It has been a big part of our lives and I think we’ve been dealing with it. But I put the marriage on a higher priority level than any disability. This is easier said than done for any mother I’ve ever met. The children usually are elevated into a position of supreme importance and most other things become marginalized including the mothers themselves. In the process, I had to learn to be less selfish which has been a constant and painful exercise.

The divorce rate for parents of children with special needs is about 80%. For autism it is around 90% according to statics Arwyn has read. The question of “why” has not been sufficiently addressed in the professional literature of either autism or marital therapy fields. It’s not hard to imagine how increased medical costs can strain a marriage financially. Or the stress of raising a child with physical and behavioral issues. However autism lends itself to stresses as far as cause and treatment unlike any other disorder or disability. There are no physical markers. There are no blood tests. There are behavioral rating scales and tests of physical, emotional and adaptive development. Even though everyone agrees this is neurological no one knows exactly the the cause and there is no cure. So it is like there is this mystery thing at work and Arwyn set off to solve it. Mostly without me, even though my education and background are more in-depth in this area. She set off to find the cure. This involved trying a lot of stupid crap. Special diets. Special nutrients. Special therapies. All of it is pseudoscience and all of it is expensive as hell. Our financial hell was mostly fueled by this sort of crap financed by my limited salary as a special education teacher.

As I started to say last post, my response to Arwyn’s deepening obsession with pseudo science was anger and withdrawal. Supportive? Why on earth would I support something that is so obviously fraudulant? It is a long con that always opens with “Just try it! Wouldn’t you do anything for your child if there was only just a chance? Why won’t you just try it? How can you put a dollar amount on the health of your child?”

All cons make use of pride, guilt and fear. With autism, the guilt is already there and so is the fear. All the con artist has to do is fan the flame a bit and then pride takes over when a family who is doing the diet, therapy or other expensive intervention is seen as being more hopeful, more intelligent, more diligent and a better parent than the ones who are not throwing money down the toilet. I might even get a comment or two here from purveyors of crap if I give this an “autism” tag. It’s like the spanking discussion; it’s hard to have a rational conversation about interventions when so much is based on irrational feelings.

Parents of older kids know what we’re just starting to learn: we have to accept our kids as they are. Autism is not the end of the world. It doesn’t have to be the end of marriage. But it frequently is.

If you talk to women, they will point the fingers at the father. He is in denial and can not handle it so he abandons his wife and child. I do see that sometimes, but that is making it seem more simple than it really is. The man might not be abandoning his child as much as his wife. Is it because he wants no responsibility? Not likely since most guys are willing to put forth a minimum of effort if they get married in the first place. But I have seen firsthand the change the mother goes through once she becomes mother. The whole concept of “wife” get thrown out the window in favor of this new role. The guy who is now “father” doesn’t anticipate the role of “husband” coming to an end but that pretty much becomes the reality. Most couples do experience a cascading effect where marital satisfaction declines after a child is born. It involves a fundamental shift in roles and responsibilities and if a marriage is already weak, having a child makes it even weaker. If the child has special needs, multiply that effect by a factor of 4.

Arwyn did admit that she was consumed by the autism world until fairly recently. She can still get caught up in things but she has mellowed on it a bit. Her and I would still have intimacy issues regardless of our child’s disability, so I have not made that a major theme here. We are exceptional and extraordinary because of what we’ve been through. But we haven’t gotten any closer as much as we’ve gotten less hostile which is progress of its own. But we can do so much better if the marriage could just show up on the radar screen for both of us once in a while. The counseling at least helps put it there for an hour or so a week.

D.

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13 Responses to LOST

  1. Kathy says:

    Digger,

    May I recomend “What Women Never Hear” (wwnh.wordpress.com) for both you and Arwyn? It deals with male-female relationships (especially marriage) and sounds very truthful and straight up. It should “step on her toes” quite a bit, and maybe give you some insight into her as well. This particular post made me think of it because on that blog the author has said more than once, “A man marries a woman hoping she will never change, but she does; while a woman marries a man hoping to change him, but he doesn’t.” It also says some stuff about women changing once they have kids and stuff. Reading that blog challenges me to keep my husband as being more important than my children–though they are both important.

    Kathy

  2. Dave says:

    I can’t speak with any experience on the extra difficulties of raising a child with ANY form of special needs, much less an autistic child; but form a cousin, who works in that field, I know that the rates of couples splitting matches what you’ve noted. She tells me that she can think of very few couples that manage to keep it all together.

    I’m hopeful for you though, any improvement is a good thing right?

  3. Xian Husband says:

    I have no experience whatsoever with special needs kids, but I can see why the stress would be bad on marriages. Most divorces happen either in the first year of marriage or the first year after a new child is born as these are the times with the greatest relational stress. In your situation, there’s aspects of that first year after a new child that never went away.

  4. Square1 says:

    You guys have already made progress before you even set foot in the session. You’ve stuck it out. Having demonstrated such fortitude already, I have no doubt greater things are ahead for you.

    As to what Xian Husband said, statistics I have read have said that most divorces happen in the first 5 years after a child is born. 1st, 2nd, 3rd, 4th, doesn’t matter. The adjustment it takes for having another person in your family is huge for everyone. Having children with special needs as you said only increases the difficulty exponentially.

    Perhaps these realizations will give you each a new appreciation for each other. You and Arwyn are both warriors. Both of you have fought for your children, and now you are fighting for your marriage, and now you are doing it together. In some ways, Digger, I am envious of you. Godspeed!

  5. Digger Jones says:

    Arwyn’s not much of a blogger, Kathy, even with things that are high on interest list. And she wouldn’t be much for reading WWNH, even though I’ve looked at it. It contains a lot of what might be considered conventional wisdom but it’s good to be reminded sometimes.

    Yes, any improvement is a good thing, Dave, but like most couples who go to counseling we’re only going after a lot of water has passed under the bridge. No way to recapture time lost.

    XH and Square, you are correct that a lot of divorces happen early on after a child is born. But the second most risky time following birth is after they graduate from school. Any major transition can lead to the cascading effect where marital satisfaction declines. Changing jobs, changing finances or changing health can all precipitate a divorce situation. Think about lottery winners who end up divorced or people who divorce after the death of a child. While we have several risk factors we also have some important buffers not the least of which includes strong faith and an ethic of perseverance by at least one of us.

    D.

  6. tajalude says:

    First of all, I should beat your ass for your Lost comments. My husband ALSO discovered Lost online a month or so back. He has been CONSUMED with watching all of the episodes, and is now officially caught up. He basically replaced watching college football with watching Lost. Anything to get out of homework. Argh. Thanks for making him look normal! 😛

    As for a special needs child… obviously, I have no children of my own, but I do have an autistic nephew (Asberger’s syndrome.) My sister and her husband have been consumed with dealing with how to raise this child, and I can see how draining it can be. I sincerely wish the both of you the best in perservering to raise healthy, strong, successful men.

  7. C-Marie says:

    Obviously, you fight the good fight regardless of statistical information. I don’t have to throw out here what I know or what I’ve read or what I’ve experienced regarding your post – I just want to say how much I admire you.

    *I stopped watching LOST after the first 4-5 episodes – I was becoming quite the addict.*

  8. ds says:

    As the mother of two on the autism spectrum, I admit that I came here and lurked for as long as I did with few comments because the intimate view of a dad in this scenario has always interested me.

    It’s hard for me to read the criticism of your wife over time because in many ways I am probably a lot like her. The exhaustion that goes along with raising kids with special needs is something that can’t easily be described. I think Digger has nicked the surface of the obsession that overtakes the lives of mothers of autism spectrum kids… attempting to unravel the mystery of the disorder. You also go through this thing where when your child is first diagnosed, you are HELLBENT AND DETERMINED to be one of those rare “cure cases” because dammit, you are a good mother and you are damned if this thing is going to steal your child from you. You look at your three year old who isn’t speaking, who is doing all this repetitive, weird behavior and not able to look you in the eye, hug you, or kiss you. It cuts to the core of your motherhood… and womanhood.

    With age comes acceptance but the gnawing at your gut about why this happened to your child never quite goes away.

    And I want to add that when you hear about these grassroots autism movements… they are backed, run, and financed by the mothers. Find a “Walk Now” event and it will be chaired by a mother. When autism convenes on Capitol Hill next month, it will be run by the mothers. What is driving Arwyn drives most mothers of autistic children, and when you are putting ALL your energy into saving the kid… raising the money… beating your Congressman over the head for the funding, I sincerely have no idea how you are supposed to also be reading Dr. Phil or Sarnach or whatever else you are supposed to be doing to please your husband.

    My husband almost stumbling into an affair at work (where he was hiding out so as to not deal with the chaos at home) around the same time I almost stumbled into an affair (with someone in the autism world that my husband was so detached from) was what woke us up. I’m glad we are firmly ensconced now in the 10% that make it work but it is not easy. When it’s virtually impossible to leave your kid with a babysitter, you find yourself tag-team parenting… spending your time with other adults and NOT your spouse… it’s just very, very easy to let that marriage slip.

    I don’t know what my point is with this, exactly – other than Arwyn probably isn’t unique in her handling of the autism over the marriage. The mothers are shouldering the autism burden. We need our husbands and our extended families sharing some of that burden. I just cannot express how easy it is to lose everything in the search to help your kid.

  9. Emily says:

    To be perfectly honest, Digger, I have a lot of sympathy with Arwyn. I don’t know what it’s like to have an autistic child, but I know what it’s like to be a carer. Sometimes it seems like your whole life has been sucked down that particular hole and there is so little of you left and so little energy to dredge out even what there is to share with another person.

    I think the problem of women becoming mothers to the exclusion of all else (including their husbands) is very common. When we have a child, we cross a threshold so fundamental that we can’t just step back over. But I have seen one thing that made me think a lot. It was a comment by Gottman that the only way in which a husband didn’t lose much of his wife when she crossed that threshold was if he crossed over with her. If he avoided the temptation of bury himself in work, or the computer, or the TV, and made sure he was with her every step of the way.

    That must be much harder when you are also crossing the “child with disabilities” threshold, but something to think about, maybe.

    Emily xox

  10. Desmond Jones says:

    Thanks for this, Digger; it really does help me to make sense of an awful lot of what you’ve been saying in the couple years I’ve been coming by here.

    I know that becoming a mother works some sort of deep-down, fundamental change in a woman, on almost an ontological level. From my own experience, fatherhood doesn’t work quite the same way for us men; at least it isn’t so ‘biologically based’ as it seems to be for women. And I can only imagine how a special-needs child just magnifies all those maternal instincts to the virtual exclusion of all else.

    All the couples we’ve known who’ve gotten divorced, have had some huge stressor that, in one way or another, ‘triggered’ the death-spiral of the marriage – a child’s illness, or even death, being two that just leap immediately to my mind. I count it as God’s grace that, when all hell broke loose with a couple of our kids a few years back, we both saw the danger, and said, to ourselves and each other, ‘we may lose our kids, but we won’t lose our marriage’. And that has made all the difference.

    It is probably true that the intimacy issues we are all so familiar with would be there, regardless of the presence of an autistic child. But, it doesn’t make it one whit easier to deal with those issues, I’m sure. . .

    I’m pulling for you both. . .

  11. Chrim says:

    I have a 21 year-old son with autism. I am divorced from his father, not just because of our son but for many, many, many reasons. I am now remarried. The “experts” say the divorce rate for second marriages are higher than first marriages. Add that to the fact we have an adult-child who may live with us forever, then I consider our chances to be in the negative percent range for making it. ha ha

    Yes…my husband and I are having problems. Yes…the majority of the reason is because of my son. Yes…my husband came into this marriage knowing I had a son with autism but I think he’s found the stress harder than he ever imagined.

    I’m no longer the Supermom who runs around trying all kinds of tricks and magic to cure my son. I did go through that phase. It’s an awful thing to hear and read about other children who were “cured” because their parents (usually the mother) gave so much time and effort into making the child normal.

    I did it all…vitamins, therapies, steroids (to shrink the brain and increase blood flow), audiotherapy, visual/sensory therapy, special prism glasses, etc, etc. I fought the schools and went to due process. I took advocates to his IEP meetings. On and on and on…

    You can see how someone can be obsessed if you think if you just tried a little harder you might find “THE CURE.” Then I stopped and decided and I didn’t have anymore time or energy. This was around the same time I realized my husband was having an affair and our marriage was over.

    Anyway…where was I? Oh yeah…I got married again and I think it was a mistake. If my child’s own father couldn’t handle the “autism life” how could I expect a man who has no biological ties to my son to be willing to give up so much. Just yesterday he was telling me he was tired of the constant presence of my son and not getting a break (his biological father has nothing to do with my son or daugher now…he got a taste of freedom and decided he liked not being responsible to his children). My current husband doesn’t want to be stuck with a handicapped child for the rest of his life…he says he’s too young to give up all his happiness.

    Where does that leave me? Sad, frustrated. I fought and did everything I could to be the best for my son who couldn’t fight for himself and it has cost me two marriages.

    I would rather be alone now and not have to feel guilty that I haven’t enough left over for my husband after working, taking care of all my son’s needs and making sure my 16 year-old daughter has as much of a “normal” life as possible. I’m guilty. I think about my children’s needs before my husband’s too much. He’s an adult, he’s intelligent, ambitious and has a great personality. He doesn’t need me as much as my children. I’m pulled between two forces.

    And I’m tired…just plain, dead tired. Tired of giving, giving, giving, giving…

    Sorry this got so long…I guess your post hit a nerve!

    P.S. And yes…we have been to therapy. We even found a therapist who works with families who have a child with a disabilty (she even wrote a book) but I think it was too late.

    Good luck.

  12. Cat says:

    Oh my Digger did you write this post just for me 🙂 As you know I can totally relate to it. I never really understood the quest my friends and other parents go through to make their autistic child normal. Thinking that cutting out dairy or whatever the latest fad is will miraculously make everything alright. BUT even though I never took on the crusade to find the cure. I definitely turned off most of who I am trying to take care of things. I don’t know why we do it, why we forget all of our needs. I honestly don’t have an answer for that. But I know it’s real. I have lived through it and have watched other mothers do the same thing. Time and the inevitable survival instinct is what helped me to start looking for help. To start accepting that it’s ok for me to have a life AND take care of my son. But since just about every parent I know is divorced I have a pretty good idea of what you are up against. And that only makes your determination to stick with this even more impressive.

  13. diggerjones says:

    Almost did another whole post to follow up on this as it seems to have struck a nerve. I think everyone read it with the intention is was posted as not so much accusing mothers but pointing out that there is another side to it. I don’t subscribe to the whole “refrigerator mother” outlook, but it’s easy to see how it could look like that once the maternal crusading to find a cure kicks in.

    What had the biggest effect on shifting my attitude from “cure-based” to more “acceptance-based” was reading blogs by people who are on the autistic spectrum themselves. Those with Aspergers tend to be especially articulate. And they have a lot of resentment against well-meaning people who want to eradicate those with autism from the face of the earth. They don’t see autism as much of a disability as opposed to being something that defines their uniqueness. For them, advocacy looks much different than from the perspective of a parent. That’s not to say we should accept all forms of poor behavior but there is something to be said from seeing things from a different point of view.
    D.

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