It took about half an hour to figure out why one phone was ringing and the other wasn’t. J was amused by this. He walked past as his tech-unsavvy parents huddled on the loveseat tinkering with the Settings, the Volume, and all other sorts of things that weren’t working. We must have called each phone from the house phone ten times before, after five minutes of struggling to release the iPhone that wasn’t ringing from its protective girdle, it became obvious that its ringer was turned to OFF.
That we closely (too closely) resembled Derek Zoolander and Hansel McDonald during the whole “the files are in the computer” scene goes without saying.
The recovery period for the experience was an after-dinner nap on the couch in the library. The phones were off and in the hallway closet all night, and only Dada’s is now out of the house and (I’m pretty sure) off and forgotten in his bag somewhere…
The weather has been unsuitable for any outdoor activity that doesn’t involve an umbrella and rain boots. Thunder rolls past occasionally, and we go from minimal drizzle to downpour alternately. J wants to be indoors, and he hasn’t expressed any desire to run errands last night or this evening. Tomorrow will be a busy day: the annual book sale for Read Aloud lures us to the great wide world, and J is happy because then he will get his weekly treat of a kosher dog and fries from Five Guys.
Ah, you will be saying to yourself: aren’t they thinking of moving? More books? Well…yes…we have several television sets that are not going with us. Several. I shudder to think of how many TV sets there are in this house, and why. The TV set we use regularly is the one in the dining/kitchen area. We watch while cooking, or we sit on the loveseat to watch a movie or show that is streaming or playing in the DVD player. There is a TV set in the garage (the sound is dead…it requires use of the iPod dock) that we have had for nine years…that is hooked up to the Wii and J’s workout-related DVD player. It gets used once a day. There is a TV that J uses in his TV room, and the one that he has in his bedroom for when he is sick and doesn’t leave his room. And there’s another TV that used to be TGG’s and is just there, plugged in, but never turned on. Of all these we would only take the one we regularly use, and J’s two. The others will either be donated or TGG can claim them. I still think we have too many TVs if we pare it down to the three.
We are looking at smaller houses, and are fascinated by the way they are laid out. People, it seems, have rooms designed around the presence of a TV. We have seen kitchens with TVs in them even though there is a TV in the room closest to them. We saw a flat-screen TV installed in a bathroom, and another in a walk-in closet (granted…that was a walk-in closet the size of a small bedroom.) I’ve asked Dada if it would be practical to have the TV hidden behind movable bookcases. He seemed intrigued and thrilled by the idea. We are, it appears, definitely birds of a feather.
Our hope is to find a house with a good finished basement that J can use for his own space. A bedroom with a window, a nice sitting area, a full bathroom, and access to an area outside where he is comfortable and safe. Space for a nice garden and a chicken coop would be lovely. We are focusing on what would improve J’s life. We know he has a lot that others don’t have, and we understand that his difficulties are small compared to those of others, but…
We recently heard of a young man, in his thirties, who -like J- is in the Spectrum. Like J he is non-verbal, and suffers from anxiety. We heard about him because someone we know needed our advice. The young man lives by himself in a one-bedroom apartment, and he has round-the-clock care. He goes to a day program, and his family visits once a week. The request for advice and guidance came from a person who is paid to be a night-time caregiver. We asked “weren’t you trained for this?” The answer was basically “sort of.”
That type of response is always scary. We feel for the caregiver who is being paid (but not trained,) and for the person requiring caregiving. No one’s needs are being met, are they? If I, who have years of experience dealing with J, have a hard time from time to time in trying to figure out what he wants, needs, is upset about, what must it be like for people who work in shifts with a person who has trouble communicating?
How lucky are we? We have the means (limited though they may be) to keep J living at home. We have the physical and mental capacity to be there for him on an everyday basis. We have gone through rough spots where we’ve been (all of us) on the brink of giving up, and yet…here we are. J lives at home. Home revolves around J. No one (except maybe TGG) has ever resented this. We understand what it means to be J’s parents, roommates, caregivers… We don’t think this is extraordinary, but -apparently- it is not the norm. At least not when the kid, like J, is an adult.
I don’t judge other families’ decision to send their adult children to live more independently if that suits their needs. Some people are better equipped to adjust to semi-independent, supervised, unsupervised living than others. Quite frankly, I think J is better at taking care of what needs to be done than TGG is, but that’s my opinion as a mother. One’s judgement is better than the other one’s, and that with ASD thrown into the mix. Maybe it is because J recognizes his weaknesses and admits them better than TGG does. Maybe it’s because J is more of a follower than TGG is. The truth is that I can tell J “this is what needs to get done today,” and it gets done with a minimal amount of hemming and hawing.
My concern, in general, is that there really isn’t more of a focus on training people to properly and effectively work as resources for those who need this type of service. There IS a need. There will ALWAYS be a need. That funding, training, certification is minimal is what is troublesome. Not every person who has a developmental disability is helpless, and not every person who works with them fully grasps this idea. Communication is key, and there is more training being geared towards de-escalating a situation than preventing an actual escalation. “I’m here to help you” doesn’t mean “I understand your needs.” It means “I have been trained to provide a basic service that might/might not address your needs.”
We know that no one else is responsible for taking care of J. We will always do this as long as we are physically and mentally able, but…it is a rather scary proposition when we realize that, when the time comes, he might be cared for by people who don’t really understand that there is an actual person inside that husk. We are doing our best to find a proper environment, a comfortable home, a balanced lifestyle that will help J thrive, and we frequently stop to think that, once we are gone, he will lose everything that he finds familiar. Not only will WE be gone, but the fact that he is counted as a cornerstone of our life will disappear.
Maybe other people have the right idea? Maybe it’s best to not make life as good as we possibly can for our son? Maybe detaching him from the comforts and solace of home is the best tack to take?
Who needs five TVs? Who even needs three? Who needs the cellphone on all the time? Who needs space for all these things (yes, books are things…don’t go there with me…we could talk about it for HOURS!) when there is a person who has this life going on inside his mind that requires so much attention? We want his world to be a happy one, and we realize how fleeting and dependent on our being there is…
That is a freaky, weird, scary thought indeed because we don’t really do “sort of,” do we? We Yoda this thing…we do, or do not…there is no “try?” And yet I wonder if we have, all along, been terribly ill-equipped for all this endeavor.