I heard it again on Saturday. I hear it at every single vcfs workshop I attend. I hear it in the literature. I hear it on the email lists. Whenever I read about special-ed, I hear it.
The goal is to help the children grow up to live independently.
Now, that is not a bad goal. After all, that's pretty much the goal for anybody raising any child. The particular academics aren't as important as the life-skills. The schoolwork is a means to educating the mind and imparting skills. But knowing how to brush your teeth, write a check, pick up your own messes, and do your laundry is primary. Most kids can catch onto the life skills and still immerse themselves in exciting studies on a wide variety of topics. But some kids have all they can manage in just getting down those life-skills. Special-ed instructors want to remind us of these priorities. And that's good.
Except...
I get tired of hearing how important it is for my child to grow up to live independently, given the definition of "living independently" that the "experts" use. They tell us how a child grows up to "live independently" with the government providing a check for his sustenance, with the government providing financial incentives to businesses to hire the person, and with the government providing a case-worker who helps the adult-child manage his money and remember doctor appointments and learn to grocery shop.
If a case-worker is there, hand-holding, teaching, guiding, then the only "independence" that the adult-child has is independence from the parents. He's not really independent. He's just not depending on family. I'm not necessarily saying there shouldn't be any of that assistance from the government. But WHY is that independence coveted, prized, and extolled, while getting the same help from his loved ones is considered unhealthy?
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Why? I have begun to think, more and more, that it has something to do with the family having something to do with the image of God. You have a community that loves one another and depends on one another and this reflects something that Satan and the world cannot stand. So they have to attack it at every single point and turn - even to the point of saying that a child with special dependencies should be separated (at some point) from the parents.
ReplyDeleteI don't have my thoughts fully developed on this, yet. I just think it must have something to do with that because, if you talk to these people, they really have no GOOD reason for children to move out. It's just... "bad" for them to stay. And whenever people cannot explain their hatred for something that is good, but simply express an irrational desire to destroy that good thing (I know - they don't think of it that way! - but that's what they're doing), then I have to think there's something theological at work.
Maybe it also has to do with the idea of dependence. Being dependent is horrible in our culture. It is not considered love to give and give and give (even to one's own child) and never expect anything in return. Instead, that probably just indicates some psychological problem with the parents are something. In fact, I'm sure they'd twist it around and they (the world) would say that it is really the parents who have a dependency and cannot "let go."
The world cannot look love in the face. It cannot, in any way, say, "Yes, I must rely on you. I need you. I can only receive from you, there is nothing I can give back." When the world sees that, it has to destroy it.
It's even gotten to the point where it is better for a child to never be born than to rely on the parents for their entire lives.
I think that's why...
Wow--what profound observations. I have never really thought about the irony of a culture that discourages and disdains dependence on individuals while simultaneously encouraging and fostering dependence on the government. But I think Nathan may have hit the nail on the head as to the root cause of what is an undeniable fact of our society.
ReplyDeleteIsn't is somewhat parallel to it being "bad" for children to be under the influence of their parents at home and "good" to separate children from their parents in public school where they can be indoctrinated into the ideal that a paid government worker knows what's best for the child?
ReplyDeleteSusan,
ReplyDeleteI have thought about this in regards to Ben's mom. I think she would have done so much better with life if she could have lived with someone that really cared for her. Sadly, her parents are deceased and it doesn't sound like any siblings stepped in to help her. While working with Milwaukee Center for Independence she has been taken advantage of and has had two children that she cannot care for. I don't think this would have been her story if she was in a loving home. (But then we wouldn't have Ben, so that's all a strange thought.) She continues to work with MCFI....but she will never fully be able to live "on her own". She forgets things so easily and needs to rely on others to get around. Perhaps it is good the government is there to "help" as much as it can for people who do not have others to rely on...but the best situation for those who cannot live alone would be to live with a trusted family member (or friend) who really has that person's best interest in mind. It is strange that you may be "going against the flow" to care for Maggie in her adult years...but for those of us who know and love you all, we couldn't imagine anything else.
Hi Susan,
ReplyDeleteMy thoughts are less profound. I see Maggie as a gift to your family. She has made you and Gary better parents and her siblings better brothers and sisters. Think of all of the opportunity you have to give and receive love. Would you be the same people without Maggie? Would you be as creative, or patient, or "Susanish" without Maggie. And she will be cared for and loved all of her life by the loving family she belongs to.
Cathy
Wow! I couldn't have said it better myself, Susan, and then Nathan's comment was the cherry on the sundae.
ReplyDeleteI felt the pressure as soon as our son with Ds was born. Social workers began visiting us daily in the NICU, pressuring us to get him on the waiting list for early intervention, even though the doctors couldn't be sure that he would live to be a month old. And those social workers kept talking about all their programs that would help him "live on his own" someday.
A friend of mine who also has a son with Ds went to a Ds convention several years ago, where she got into two separate arguments with vendors promoting 1) drinking for people with dev. disabilities, and 2) birth control for people with dev. disabilities. The vendors' argument was that it's the dev. disabled's right to drink and be sexually active, which they will do once they begin to live independently of their parents, (which was assumed, of course).
This is a topic that does not get enough exposure. So glad you brought it up.
Yeah, I think Nathan really nailed it as to why our society pushes the so-called independence.
ReplyDeleteI hadn't heard of the drinking for people with dev disabilities, but I had heard of the other. Gary spent a few years on the board of directors of a group home. Man oh man. Apparently sexual promiscuity is a big problem. Nobody thinks that slower people can control themselves, and of course [can you hear my disgusted sarcasm?] they can't "understand" the consequences of their behavior, so we just expect them to act like animals. Sheeeesh. Reason enough to keep a kid from moving out of the house!
We had a number of dev. disabled patients come in for the depo shot, because they couldn't handle taking a BC pill everyday or they'd fidget with the patch until it came off and was ineffective.
ReplyDeleteI'd never heard of anything like that before, and was appalled.
Hi Susan!
ReplyDeleteI have a son with VCFS who is 20 and we are now entering this phase of life.
You said:
"If a case-worker is there, hand-holding, teaching, guiding, then the only "independence" that the adult-child has is independence from the parents. He's not really independent. He's just not depending on family."
I think alot of what you've been hearing about independence isn't so much to drive a wedge between parent and child or make some judgment on the parent. It's a wonderful thing to have parents who care for their children in such a way, but people with disabilities have struggled for years to be treated as anyone else when it comes to the right to determine one's own life, i.e. how to live it and where.
Our son has some significant needs and we currently have guardianship. But, we would love to see him have as "normal" life as any person can have which could mean him moving to a supervised living situation and hopefully at some point to be able to live in house or apartment. It gives them a sense of pride in being able to have their own life away from family.
If a family can give their child the same benefit as the government programs that is awesome, but in some instances, particularly with our son, the maturation of the child can be better when away from a parent or family just as it seems a lot of children gain skills in the mainstream that they would gain if otherwise contained special classes all of the time.
I agree that "living independently" has its downs side as some in the comments have suggested, but unless one has guardianship of someone, at 18 all rights legally revert to the child. Teaching good "independent" skills and the responsibility should start quite early because if the disability of the child is severe, it takes a long, long time to develop it.
"Living independently" and learning basic skills to hold a job is the goal of every IEP (depending on the disability).
There is a program out now called Consumer Directed Services that allows for the consumer to contract his own services and hire and fire attendants. The program is an alternative to the ones run by the state agencies. I live in Texas but I ran across a video that explains it. If you would like to view it, you can find it here:
http://uttcds.org/DADS.html
I agree with your blog about life skills. I think a lot of what you hear about the "living independtly" is political but from the result of years of people with disabilities lobbying to have a right to determine their own future, which they could not otherwise have if they didn't get support independent of their families. When they become adult they want to live as "adult" as much as they can. Does that mean that each should? No. Some may never have the maturity of skills to make good decisions. But, it seems that even those with disabilities do mature enough to want to try.
Many people with disabilities do not qualify for government and rely on their families for the support. They can be "independent" but, as with any child growing up, the problem will come in how much "independence" one feels they have or should have. It's a normal part of growing up for all of us. :)
Hi Jody,
ReplyDeleteI'm not Susan, but I would like to reply briefly, because I think your post actually brings up a very good point. And that point is: what does it mean to live a "normal" life?
I do not believe that normal has to be growing up, moving out of the home, and living independently from family. That is, indeed, what our society thinks of as normal. But that is actually a relatively new concept. For a very, very long time, normal was growing up in the same house as grandparents, parents, siblings, and one's own children. It was a loving, caring community. Sure, not everything was perfect, and not everyone lived this way, but it was not really until the 1900's that this became especially abnormal.
I do not have a child with a disability, but as my wife and I are expecting, and as VCFS is in her family, we know that there could be the possibility of having a child with some kind of disability. That said, I think that our goal will be to teach our children that there is nothing abnormal about living together as a family.
America is all about independence. For us, that is normal. Dependency is abnormal. Even (perhaps especially) if one is not developmentally disabled, being dependent on another person is considered a societal faux pas. You don't do it. It's not right. Everyone should live on their own.
And while we should not condemn anyone for desiring to live independently, it should be noted that this is not how we were intended to live. We were, in fact, intended to live dependently. We were meant to rely on one another, constantly loving and receiving love. Love is *all* about dependency.
Thus the problem some of us have with social workers. They encourage independence, as though dependency is something wrong. For some reason, dependency on the government is not seen as dependency, but dependency on the family is seen as something undesired.
And so, ultimately, I think the points being made here is that if dependency is necessary, better that it be dependency on family than dependency on government if possible.
With all of this said, I am not trying to say that what you are doing with your son is in any way, shape, or form wrong! Far from it! Just that people with disabilities who rely for their entire lives on family should *not* be seen as though they are not living as everyone else. It should not be an abnormal thing. Nor should it be something undesired. Rather, receiving the unconditional love from father and mother, brother and sister is something to be commended and desired and encouraged. Dependency is good. Receiving love is good.
This can happen in many ways. Those who can go out on their own and have their own place and such are truly blessed. But so are those who stay at home and receive the depend on the constant care and love of family - and this is *not* something that should be discouraged. Unfortunately, today, it is something that is discouraged in our society.
I think that this is the key issue here.
Hi Nathan!
ReplyDeleteI do understand what you mean. I think the only thing one can do is teach their child that they have choices that may not be popular with the mainstream. We also need to tell them their options. They can still have "independence" and help from the gov't programs. They need to know that help from us is just as valuable than help from the gov't. We need to help them understand that what we do is the same thing, to some extent, as what is being taught to them by an counselor.
In my circumstance it has been the case that Austin learns better from from a teacher. He is in a stubborn phase and does not want to listen to a parent. This makes life quite difficult when wanting to teach him about life and why I think some of the programs offered are a good thing. It is just scary wondering how your child handles the temptations of life outside the protected environment of home. We have to careful and screen the places our kids go to.