Monday, February 06, 2006

A HOUSE MAY NOT BE A HOME (Even if it has Cable TV)

A story from Elmont, New York caught my eye the other day. The county opened a new group home for adults with autism. For me, this story brought a lot of feelings to the surface about why so many parents of autistic children ⎯ including me ⎯ insist on using various interventions to [choose one: cure our children; heal our children; alleviate negative dysfunctional aspects of our children’s autism; ameliorate the comorbidities associated with our children’s autism].

In the last six months or so, I have heard from so many adults on the spectrum that live full and meaningful lives. So I realize that the interventions my wife and I elect to use with our son are not necessary for all autistic children.

I hear time and again how “all” children eventually improve and learn to communicate and interact with the world around them. I want to believe that so much, but there often seems to be a question about how far any particular autistic child can go without interventions designed to counteract a probable trigger of the autism.

The story from Elmont focused on one family of a 24-year old man who moved into the home with great excitement. His mother noted that the residence “looks like a real home.” She didn’t say it was a real home: only that it looked like one. The young man’s father made a comment that made me wonder how he views the limitations on his son’s life: “He’s got cable, everything he needs.”

This is going to sound harsher than I really want it to, but I want my son to grow up with more to look forward to than something that looks like a real home with cable television. I want him to build his own life and to have his own home, not just be able to live in a house.

Am I making a value judgment? Absolutely! And I would never presume to make such decisions for that young man in New York and his family. This home will probably serve his needs quite well, and it may even be the best solution for his family. It will provide a modicum of independence. For my son, though, I want nothing less than full independence. I want him to have the freedom to tell the entire world, including me, to shove it.

The decisions my wife and I make today on our son’s behalf may well determine whether he achieves that full independence. In making those decisions, we have to carefully consider both physical risks, and the risk that we may be altering his human uniqueness in some way. It is an awesome responsibility that is not to be taken lightly. But making those kinds of decisions is what parents do.

8 Comments:

Blogger Kristina Chew said...

Take this group home and shove it?

Though if that is "independence" for Charlie, I can live (and die) with it. But certainly not a "lookalike" home and "cable TV." There will be books and music and there will be lots of friends and relatives, and Chinese holidays to celebrate, and trips to the ocean and daily swims and bike rides. There will be conversations.

As it happens, Charlie has been imitating his dad saying "take no lip." Or prisoners, or what some might say is "everything he needs."

2/6/06, 10:40 PM  
Blogger Kev said...

Not only a value judgement Wade, but you're making it based on the opinions of the parents alone. No one seems to have asked the man himself what he thought. Possibly because they feel that if he can't talk, he can't communicate.

2/7/06, 1:44 AM  
Blogger Wade Rankin said...

Kev,

The article wasn't real clear, but the young man seemed capable of communicating quite well, and he was apparently happy to be going to the group home. But why wouldn't he be content if that is what he has been raised to expect as his best opportunity in life.

Please understand. Everyone connected with this story seems to have the best of intentions. I'm sure that, as group homes go, this one is a dandy. But don't tell me that autism is just a different cognitive wiring if so many autistic adults have to live in an assisted setting.

As I said, I'm not making a value judgment for this young man and his parents. But I will make it for my son, and without apologies.

2/7/06, 6:55 AM  
Blogger Derek's Mommy said...

As a parent would want for their children to graduate high school, go to college and get a degree vs drop out of school and mooch for the rest of his/her life, I think the same can be said for wanting a child with autism to live to full potential.

Take my oldest for example, not on the spectrum, at 14 if I've just accepted and not molded her behavior she would hole herself up in her room and read. Not that reading is bad, but had I not given her the opportunities to work as a volunteer at the zoo, or play soccer, or join girl scouts, she probably would not have. She'd drop out of school most likely, and just spend her life reading anime books. You have to mold and shape behavior because you are the parent and that is your job.

The same goes for Derek, if I do not mold his behavior how will I know if he can say full sentences, how will I know if he will want to play soccer. If I had not changed aspects in his life he'd happily be sitting on the couch right now watching Baby Einstien on repeat, only getting up to spin in circles and run his head into the carpet and scream loudly until we figured out exactly what he wanted.

To me that is unacceptable, I'm doing my child an injustice to not intervene and mold and shape his behaviors.

2/7/06, 4:52 PM  
Blogger Anne said...

Do you think our kids will put us in group homes for old people? If so, I hope they have Cable TV. And a high speed internet connection, too. And books and music, of course. The friends and relatives would be nice but, be realistic, you know how that goes.

If my son has his own place, maybe I can move in with him. This makes it imperative that he not move into military housing, a monastery or seminary, a kibbutz, commune, collective or other group living situation. Because I detest group living. I really do.

Yeah, he'll have his own place. That's the plan. I'm hoping he won't be having that many dinner parties for me to ruin with my geriatric ranting. "I take no lip, you sons of bitches! And who stole my glasses this time!!"

I am so looking forward to this.

2/7/06, 10:28 PM  
Blogger Wade Rankin said...

Okay, let’s try this again, just to make sure everyone is clear. I have nothing against group homes. As far as group homes go, this one sounds very nice. What I am saying is I want my son to have options. I want him to have his own place, his own friends, and his own life.

Anne, I think we’re saying the same thing here, but that happens so damn rarely that I can’t be sure.

2/7/06, 10:36 PM  
Blogger SquareGirl said...

Wade, after teaching a classroom of children all diagnosed on the spectrum, I remember thinking, "who ever came up with THIS idea?" To many people this makes perfect sense..."grouping" people together with similar disabilities, rather than looking at other more inclusive possibilities, usually for convenience...I think there really needs to be a paradigm shift in order for people to see that EVERY child's, every persons needs are INDIVIDUAL. I have come up with what I believe would make this happen...every individual should either be a parent of a child on the spectrum or spend at least an entire year with a "group" of people diagnosed on the spectrum before they are allowed to express any opinions about the appropriateness of "group" placement.

2/7/06, 11:18 PM  
Blogger ballastexistenz said...

The main trouble I have with the reasoning, a lot of this, is that... group homes, and larger institutions, are not inevitable. This has been shown time and time again -- even the most severely disabled people can live in their own places. The main trouble is that there's this whole model of support that says it has to be done a certain way and that's throwing a bunch of people together.

I am very lucky in that I am benefiting from the work of many advocates, including parents, who have been working since before I was born, to make sure that people like me don't need to live in group homes. If they had instead only been working to make sure that their own children would not turn into the sort of people who usually get put in group homes, I would not be living in an apartment.

There's an unfortunate tendency to equate "group living" with "more support" but it doesn't actually work that way. That's just the way the funding goes. That's unjust, and people work to change it.

In my home state, without what amounted to a near-mandate that people like me be able to live in our own places, I would have been "placed" in one of the "highest level" (as in, "most care required for residents") kinds of group homes. I knew people who had no communication system beyond a few words or signs (if that), who lived in their own places. I attended (and collapsed at :-/ ) the housewarming party of a friend who communicated entirely through body language and had finally gotten her own home. She showed everyone around and was very excited (she'd been living with her brother, who talked about her like she wasn't there and insulted her regularly in her presence).

As long as people promote the idea that a certain "degree of disability" means "having to live in a particular kind of living situation such as a group home", then it will be that much harder for people like me, or my friends, to live in our own homes. So while I suspect I understand your reasoning, I can't agree with it, since people like us will always exist (no matter how many cures are attempted), and we will always need real homes, not just when we're brought up to a certain standard of functioning that a lot of us will never hit.

2/8/06, 6:06 PM  

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