Acceptance, Awareness?? All trite terms, and how do we?

I talked in my last blog about the isolation of individuals who are developmentally delayed and of how society as a whole views them and to some extent subconsciously avoids them.  And I don’t mean ‘society’ in the Jane Austen sense of ‘those we grovel at, so we get to be part of the in group’, but merely people whom we naturally rub shoulders with, like extended family, neighbors, church, sports clubs, parks, work.

Last time I also mentioned how we sometimes talk to young adults and adults with special needs as if they were six—in a sort of preachy moralizing tone that goes on and on and bears down on the individual with the aim of generating some level of shame in the individual ... and then last night I was so totally guilty of that very behavior. Ben was taking a bath, and of course we extend the same level of privacy to him that we extend to any other member of the family (or, we try to, but we don’t always succeed).

You see, the issue is that he does not have too much sense of how much shampoo and bubble bath to use (he loves bubble bath!) and we don’t really want to add weekly bottles of Ben shampoo and bubble bath to our grocery budget. So I do monitor the use of supplies by giving out appropriate amounts at the proper times. Or at least, so far, I have not found a better way to deal with this.

What do I behold when I enter, but a bathroom which evidences the remains of a massive tsunami? Totally understandable, really, when one considers that he was playing with all his Matchbox sized Cars II vehicles. :)

Well, it is not the first time I have mentioned to Ben that tsunamis in the bathroom do not come highly recommended. This time I turned up the tone in hopes of generating some empathy for my cause. Problem with us adults when we deal with six year olds is that when we are out to make an impression, we feel that we have to put the emotional stakes high enough that there is a threat/intimidation level present in our message. Once we drive that message home, we forget to quit. Instead, we go for broke—just in case--especially if the kid in question does not respond as receptively as we would expect him to.

Basically we parents don’t always know when to quit. Nor when to employ alternative creative strategies which in the long haul may be more effective. At some level I think it’s called emotional unloading. We are wrought at what we have seen perpetrated at the hands of this ‘kid’, and we need to bring ourselves down from the emotional high, and we achieve this by not shutting up in a timely fashion :P .

One time my daughter got scolded by a lady after church for sharing a laugh with another kid during a church service. My daughter was outraged because the accusation was actually inaccurate (she didn't laugh, she only smiled at the other kid). Kirsten, being my daughter, tried to argue with her, but the lady would rant nonetheless. When the lady finally left, the other girl who came from a family of five and was used to being lectured at  told Kirsten: “Just say you are very very sorry and that you will never do it again, and it will be over a whole lot sooner.” :)

And it was precisely that strategy that Ben used with me last night when I was trying to impress on him the necessity of not flooding the bathroom floor when he takes a bath. “Yes. Ok, I am sorry.” In fact, he is most agreeable, and it's precisely that strategy of "if I agree with her, she will shut up sooner."

All that to emphatically say that what I preach, I don’t always practice as well as I wish I did.

But back to my main concern and discussion about acceptance of persons with mental disabilities. It is a difficult issue, partly because so many of the persons who would be born with, f.ex. Down’s, are selectively aborted. We have effectively purged from our society about 2/3 of such individuals (my rough guess based on some statistics I heard in the Danish news) and as such, fewer of us deal with these persons, and even fewer of us begin to have a clue as to how we should best deal with such persons. (And by no means am i trying to give the impression that I have all the answers... on the contrary, I have all the questions, because I live with this all the time!)

In the 50s and 60s persons who were disabled or mentally ill were more or less incarcerated in group homes, and we saw little enough of them. Now, for the mentally ill, we see a significant number as homeless because they do not know how to deal with modern living. For the mentally disabled or developmentally delayed, we—society—do (does) have the good sense to realize that they do not have the judgment or capacity to live alone, let alone make a living, but integration is not a simple process, and as I hinted at, while we’re awesome with toddlers of whatever stripe of delays, we’re not so successful with adults.

Adults who are developmentally delayed (which is often code for permanently delayed), are ‘there’, sort of, but not really there either. We smile and greet them. We may even give them a high five. Some people (actually quite a few) laugh nervously at everything the developmentally delayed person says, as if he were a cute four year old. Let me put this strategy to rest immediately. At least for my son Ben, there is nothing he hates more than the friendly nervous laugh of a random stranger (or an acquaintance from church). In fact, most of the time Ben says, “please don’t” when people do that because he feels so not included when there is a laugh and he usually internalizes the fact of the laugh and thinks the person is laughing at him, and that hurts him.

My honest feel for what we—society—don’t get is what it means for a person with Down’s of, say 25 years of age, to be an adult. We don’t know how to talk to the person, we don’t know what the person ought to be doing. If we are in America, we also don’t know who should be paying that $150-$300 per day care for that developmentally delayed person after age 21 or 26, depending on the state ( and trust me! Neither does the devastated parents of that developmentally delayed person). But I will save the money and adult care discussion for another day and limit this solely to social interactions.

Adulthood, at least in America (I can’t speak for the rest of the world) is an earned proposition. We rise to a certain level of responsibility. We acquire independence through proving that we are capable of assuming the responsibility. Nobody takes care of us any more. We have fully arrived at adulthood. With that adulthood comes independence and with independence, the respect and the esteem that every person aims for.

How can we bestow adulthood on persons with developmental delays when we as parents can barely muster it for our own late teen and early twenty college students?

Financial independence is the one  (and greatest) measure of adulthood in America.

And yet,  since we bestow legal adulthood on anyone 18 and above, we have to think broader in terms of rendering respect, understanding, and acceptance to individuals who are 18 and over, but who do not meet the independence criterion for adult hood.

18 is an artificial legal line that has been drawn for smoking, voting, military service, and age of accountability for criminal behaviors. If financial independence is the ultimate measure, my son with Down’s will never reach an age where he will be greeted as an equal or respected in his own right. And with him go scores of other persons with disabilities, as well as a slew of college and graduate students who ostensibly could get there, but who are taking the long road to adulthood and respectability.

Can we redefine adulthood without diminishing the expectations of the average typical person to eventually (the sooner the better) reach financial independence and responsibility for his own actions?

Or can we at least define adulthood for the special needs person as having 18+ years’ experience of life in the body and mind that God gave him? And as a result of this, can we choose to try to treat that person with the respect he craves?

Remember, unlike typical adults, the person with Down’s is expecting very little of your interaction with him. He is happy to share a donut or a cup of tea, or merely to be allowed to sit next to you. He does not cringe because you have nothing to say to him. His ability to sit in emphatic silence is something the rest of us could learn from. Silence is part of his life, much of it (and especially my son who is hard of hearing and speech delayed), and so long as it is a pleasant environment, he does not always require any conversation directed neither his way, nor any conversation at all.

 When he wants to talk he will use his electronic device, write on a piece of paper, or simply try to articulate what is on his mind. He expects little of your return talk. If you receive his talk positively (and that simply implies that you listened), he is content that he made a connection. Rarely does he even require a specific response.

I am not advocating anything here that needs to be legal or enforced. I am simply looking for 'awareness' (however trite that term has become nowadays). In particular for those of us who strongly advocate that abortion of mentally challenged babies is so very wrong -- we need to carry that principle through in terms of support of parents who 'choose' (and yes, it is a choice, since Roe V. Wade) to keep their disabled children, such that society is welcoming to these disabled individuals when they become adults.  And that requires some level of re-education as to how to interact with these 'NOT perpetual children-neither in mind nor in body' individuals.