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Parenting Children with Special Needs Blog

08/16/07

But What If She Never Gets Better

Posted by : Julie in Parenting Children with Special Needs Blog at 01:22 pm , 952 words, 217 views  
Categories: Daily Frustrations

I’m just finding time to catch up on the firestorm of responses that Nancy has garnered over on the Reactive Attachment Disorder blog about her daughter Amy. Having known Nancy and Amy and the whole family for several years now (and provided respite for them a few years back), I know that Nancy has both intense love and a realistic view of Amy.

I also know Nancy has an uncanny knack for saying out loud those thoughts that the rest of us try to push back into the dark recesses of our brains. Thoughts about parenting, love, attachment and failure that not many people want to look squarely in the face.

And for that, apparently, Nancy is vilified. I’m always amazed at how angry Nancy’s posts make some people. Perhaps it’s because I know her and Amy, know how much she loves Amy, know that Amy knows her mom loves her, and know how little Amy does for herself. Perhaps it’s because I’ve seen the two interact and seen that Nancy does indeed treat Amy with warmth, while still trying (against lots of odds) to hold her accountable for the choices (or in her case, non-choices) she makes in her life.

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So what are people so angry about? Well, I can only surmise that they are angry because Nancy is voicing their fear (and it’s become an reality for her) “What if my child never gets better?” Most of us who are living with traumatized children have asked this question (usually in a secret dark place in complete silence). On most days, I refuse to let myself go there.

As I was walking the dog last night, I let my mind wander on our day. It had not been a very good one. LuLu had been agitated and snarky all day. She had threatened me and Kay more than once, and I had replied with anger…because I was tired and fed up. Now I can usually bounce back very quickly from my own angry mood and rationalize that LuLu “can’t help it”. But instead my mind began thinking about what the ultimate end of LuLu’s “can’t help it” might be. My biggest fear (I’m about to say it out loud) is that an adult LuLu will injure or kill someone in a fit of rage or that her threatening behaviors will get her into a situation where someone else will kill her (this is even more likely).

As my mind rested on this scenario, I tried to imagine what it would be like, as her mother, for LuLu to meet either of these ultimate fates. And I realized that I would feel an odd combination of sorrow, guilt and relief. Yes, I said relief.

The thing that makes parenting children with mental and emotional challenges, or children who suffer from the effects of trauma, attachment disorder…however you classify it…so much different than parenting healthy children, or even children with physical handicaps, is that sense of relief that the parents feel when the child’s fate is finally sealed, and the parent is no longer responsible for and waiting for the final outcome. That inevitable, horrible event that you had imagined all your child’s life had finally come to fruition. To those outside of this type of parenting, saying you would feel relief in the face of a tragic ending is tantamount to admitting you’re a cruel, heartless parent.

But I know I’m neither cruel, nor heartless. I’m only looking for an endpoint, for a time when I won’t have to be on duty 24/7 or worried about exactly where my child was, what she was doing and how long until she blew out of that situation. And in that way, I’m pretty sure Nancy and I have much in common. Although the likely scenarios we envision as our children’s fates may be different; the realization that is a high probability (if you’re placing bets) that they are not going to live “happily-ever-after”. And let’s face it, regardless of what our cognitive brains know (i.e. we went to the ends of the earth for our children), we still question ourselves. Did I do everything I could? Did I try hard enough? If only…

As Shakespeare would say, “therein lies the rub”. That fear of failure as a parent always gets in the way. As much as I tell myself I’m doing all I can, the truth is, that when LuLu is grown, everything I’ve done, everything I’ve sacrificed, my whole life’s effort may not have been enough to save her from some violent fate. Nancy, too, did all she could, and, at least at the present time, it looks as if it has not been enough to keep Amy from bombing out at life. When other adoptive parents read this, it strikes fear into their own hearts. If this can happen to other parents, parents who look like they truly have poured love, time, effort into their children, then could it happen to me? Could I “fail”?

Truthfully, I must tell you that if you measure your success or failure by whether your child gets better or not…yes, there’s a high probability you will fail.

And even if you try hard not to measure your own success by how your children turn out, you will still have those days where their failures will seem like your failures, and where you truly wish that the end of the story would just come…regardless of the outcome…so that you can feel that sense of relief.

Comments, Pingbacks:

Comment from: BEACHLADY [Member] Email
Well said!

Great post!
PermalinkPermalink 08/16/07 @ 14:07
Comment from: Nancy Spoolstra [Member] Email · http://attachment-disorder.adoptionblogs.com/
Oh, Julie. I'm losing it here. You said it so well. Especially this part:

" ...the parent is no longer responsible for and waiting for the final outcome. That inevitable, horrible event that you had imagined all your child’s life had finally come to fruition."

I can't tell you how hard I fought against us ending up exactly where we are. I guess I don't have to tell you -- you know. And yet, here we are.

I know there is still a chance she can "join" our family some day, as in participate in life. Many tell me not to despair. But I also know what horrible things inevitably lie ahead until and if she figures things out, and it is nearly impossible not to be angry, hurt, scared, incredibly disappointed, and every other possible feeling, knowing that I will have to allow that to unfold. It just stinks, in a huge way.
PermalinkPermalink 08/16/07 @ 14:15
Comment from: mmarschner [Member] Email
Having one of those days, and you've said it. Great post
PermalinkPermalink 08/16/07 @ 14:31
Comment from: AdoptionBlogs Editor [Member] Email · http://editor.adoptionblogs.com
Anyone who reads Nancy's blogs can see that she loves Amy and only wants the best for her - to include being able to competently care for herself one day when Nancy and her husband are unable to.

When people condemn others for trying to get their children to stand on their own two feet, they are simply showing their own ignorance about life.

What parent doesn't teach their physically able child to walk? Vilifying a parent for trying to be a good parent is just plain stupid.
PermalinkPermalink 08/16/07 @ 14:40
Comment from: Faith Allen [Member] Email · http://hoping.adoptionblogs.com/
I know several abuse survivors who have told me that they had to hit rock bottom before they starting becoming responsible adults. They were so angry about their abuse histories, and they were willing to stay dependent financially forever until the purse strings were cut. They have told me that the greatest gift they received was their parent's or guardian's confidence that they could take care of themselves, even when all evidence was to the contrary. I am not talking about people with physical handicaps -- I am talking about people who were traumatized as children but were physically capable of taking care of themselves but choosing not to, doing thing like spending the rent money on junk.

When we continue to bail out other adults, we are sending them the message that they are not capable of fixing their own problems. We create a dependency that is not healthy for them. I know one abuse survivors who was evicted twice before she figured out that she was going to have to figure out how to take responsibility for her own life. She says that this was a very painful time in her life but that she is now grateful because it led her to being a responsible adult today.

As for what we pour into traumatized children mattering -- Yes, it matters, even when we do not see the results we hope for. Your love plants a seed inside of the child's soul that can blossom later in life. Maybe it won't blossom at 18, but the seed is there to blossom when she is ready.

Hang in there, Nancy.

- Faith
PermalinkPermalink 08/16/07 @ 14:54
Comment from: John [Member] Email
In dealing with people driven by intense compulsions, there is an old saying, 'Baby them and bury them'. If they are never allowed to reach their bottom, their compulsion will destroy them. Just exactly what Faith is talking about. I have a 22 year old with many disorders, addicted to crack, and living on the street. My challenge is to not do for him what he must do for himself. It hurts, and there is no known end point. John
PermalinkPermalink 08/16/07 @ 15:49
Comment from: Justmemom [Member] Email
Well, not anyone.

"When people condemn others for trying to get their children to stand on their own two feet, they are simply showing their own ignorance about life."

At my church I often see parents with their grown (and aging) mentally-challenged children. Thankfully these parents just don't don't expect their children to just stand on their own two feet.
PermalinkPermalink 08/16/07 @ 15:51
Comment from: Faith Allen [Member] Email · http://hoping.adoptionblogs.com/
Justmemom,

There is a difference between a mentally-challenged child, such as someone with a very low IQ or with a severe case of schizophrenia, and somebody who has been traumatized as a child but is both physically and emotionally capable of living a responsible life. For those who have the ability to care for themselves, we do them no favors when we keep them dependent upon us.

I like the analogy of the butterfly breaking out of its cocoon. If you "help" a butterfly along by opening the cocoon while it is struggling to get out, it weakens its wings, causing permanent damage. However, if you allow a butterfly to struggle to break out of its cocoon on its own, it strengthens the wings, making it a much stronger and healthier butterfly. When we continually bail out adult children who have the capacity to care for themselves, we are like the person who rips open the cocoon.

I speak from experience. I was SEVERELY abused as a child, but I found a way to become successful and responsible in my life despite the trauma, and I did this by learning how to take care of myself. I have a close relative who stayed dependent upon others, even into her thirties. It was not until I, as well as other relatives, stopped pulling her load that she figured out a way to lead a responsible life herself. It was painful to watch, but it was a loving choice that I made. I was not showing much confidence in her ability to make good choices when I was mailing her checks all the time. It was when I trusted her to have the intelligence to figure out how to lead a responsible life that she finally started making changes.

- Faith
PermalinkPermalink 08/16/07 @ 17:23
Comment from: mariah [Member] Email
Exactly, Faith. I'd forgotten the butterfly analogy.

Lisa, you wrote,
"When people condemn others for trying to get their children to stand on their own two feet, they are simply showing their own ignorance about life."

I nearly DIDN'T let my two youngest stand on their own two feet. And it nearly did us all in.

John, I hadn't heard "baby them and bury them." I'll have to remember that, too.

PermalinkPermalink 08/16/07 @ 17:52
Comment from: SunnyAndrsn [Member] Email
Working in community based residential facilities, we allow people to live life as completely as they are able to do safely. As such, that often means allowing mentally challenged adults to stumble and fall (figuratively, not literally) so THEY can find their limits. With just a little encouragement they push themselves in a way our RAD kids refuse to do.

With our RAD children, I can talk until I'm blue in the face, and I can rescue or "helicopter", as the Love and Logic folks would say until I'm exhausted. While all of those things would indeed show love, It would also cause more limitations and in effect, cripple them.

I wish they could learn with just me saying "don't do this, or do that". I have a child like Nancy's Amy, and my words simply do not work. He HAS to find out for himself...and he rejects my love and advice at every turn. If only loving them to health worked. Instead, up is down and down us up with our kids.


PermalinkPermalink 08/16/07 @ 18:35
Comment from: Faith Allen [Member] Email · http://hoping.adoptionblogs.com/
"If only loving them to health worked."

I believe that allowing an adult child to fall on his face and then learn how to pick himself up **is** loving him. Whether or not he finds health is his own choice. By the time he reaches adulthood, you have done all you can. The rest is up to him.

I greatly admire all of you parents who pour so much love into your RAD children.

- Faith
PermalinkPermalink 08/16/07 @ 18:44
Comment from: nancyderen [Member] Email
In the adoption training classes I took, they talked a lot about how the best outcomes are strongly related to the parent having realistic expectations. It can be so hard to strike the balance of working hard for the best possible outcome, while also working on being able to accept different outcomes and not setting expecations that will lead to failure. Am I expecting too much? Am I expecting too little? For me, trying to set high expecations but not having my happiness invested in them works best, and may be a little easier in my situation because I chose to be a special needs parent, so I knew perfectly well going into this that it would be a lifelong responsibility (of course, I have family members who think that means I should never express any frustration because I "asked for this" - yeah, right!). To me, "happily ever after" just means that my daughter will be able to feel happiness, give back to the world in some way (this could be volunteer work, part time work, or just relationships), use her talents in some way, and have satisfying relationships. It doesn't have to be anything more specific than that. I hope she continues to heal and reaches her full potential and has a very happy and satisfying life, but I try not to make my mind up too rigidly about what her potential is. I think it is important for parents of kids with special needs to see "happily ever after" much more flexibly than other parents. I've worked with lots of profoundly disabled people who were very happy, and who gave back to society through their impact on those around them. Not living up to our culture's standards of "productive member of society" does not mean failure, in my opinion. I also have the fear of my daughter being harmed violently due to her behavir, or harming another person, and I don't mean to minimize these fears, but I also think it is important to keep in mind that many people with all kinds of special needs live very happy lives. And many people's hormones and brains do mature enormously in their 20's, and many people achieve things no one ever thought they could. And, the "end result" isn't the only measure of success- the journey is very important. It sounds like Lulu and Amy and all the kids of people who write here have been given so many wonderful family experiences and memories, and that alone is a success, however the kid does or doesn't seem to make use of the eperiences.
PermalinkPermalink 08/16/07 @ 19:41
Comment from: NCOZADD@aol.com [Member] Email
Your quote, "Truthfully, I must tell you that if you measure your success or failure by whether your child gets better or not…yes, there’s a high probability you will fail.

And even if you try hard not to measure your own success by how your children turn out, you will still have those days where their failures will seem like your failures, and where you truly wish that the end of the story would just come…regardless of the outcome…so that you can feel that sense of relief."

Oh.... I wish that I were as articulate as you. Your words brought tears to my eyes, and speak exactly of how Love Muffin and I try hard to cope with our RADish.
PermalinkPermalink 08/16/07 @ 21:59
Comment from: Faith Allen [Member] Email · http://hoping.adoptionblogs.com/
All of you RAD parents need to remind yourselves that you are NOT responsible for "breaking" the child. That responsibility lies squarely on the shoulders of the people who did. Not every broken soul can be fixed, and you do not have the power to do the fixing -- only the child does.

(((((((( HUGS )))))))

- Faith
PermalinkPermalink 08/17/07 @ 04:47
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