CurlyI am, by nature, a person who has to have answers, who has to understand why and how things come about. Sometimes my questions come across, even to me, as whines, but that isn’t what they are – for the most part.
Take, for example, my grandson’s autism. He is an Aspie, short for Asperger’s Syndrome, his section on the autism spectrum. I long ago accepted that he has this permanent condition. I am beginning to accept that he might never learn how to get along as an Aspie adult in the predominantly non-Aspie world, a world that doesn’t want to make room for the “imperfect” (note the sarcasm in my voice, please) among us. It pains me to think this, but I see evidence of the possibility; probability, more accurately.
For instance: he attends a social program designed to help Aspies (and others on the spectrum) learn to cope with the rest of the world. This program closes its doors at a certain time with no admittance if a client is late. The purpose of this rule is to help the children learn to follow rules, to be punctual and to be considerate – all useful attributes for the work place, as well as school and home. Besides all that, it takes a while to get the kids settled into the program’s routine each day, and latecomers delay and disrupt the routines. So, grandson is very conscious of getting out of the house and down the street to the Amazing Kids’ Club on time.
As I was getting ready for work yesterday morning, about to leave the house, grandson calls.
“Nanny, I don’t know what to do,” he begins breathlessly. “The fire alarm is still going off and I can’t get back in to the apartment until it stops and I’ve got Curly with me and I have to go to Kids’ Club. I can’t be late and Mom’s in Lebanon at the VA Hospital.” Heavy, fearful breathing almost drowns out the words. “Can you get my cat? Do you have to work today?”
I tell him that I can’t help him with the cat (his therapy pet) and ask if he thinks it will be okay for him to take the cat with him to the club. Is Curly in his carrier?
“I can ask Mr. B [club director] if it’s okay to have Curly there. I don’t know what to do. Should I call Mom?”
He is trying not to panic; I can hear it in his voice. He tells me his mother won’t be back from Lebanon until late in the afternoon.
It didn’t occur to him to call Kids’ Club about his situation, to see if he could arrive a little late because of the apartment building’s rule that no one is allowed in until the fire department gives the all clear. He didn’t think to ask if he could leave his cat with a neighbor until he or his mother could get back. He was afraid his mother would be angry if he didn’t go to Kids’ Club as he was supposed to do, and afraid that Mr. B would either be angry, too, or wouldn’t allow him in. Grandson looks forward to Kids’ Club, a bright spot in his day. He was confused and anxious. He can’t think clearly or rationally when situations arise that are not in his routine. Just one of the curses of this neurological disorder he endures.
My grandson is almost 19 years old and over 6’4” tall; extremely intelligent (most Aspies are, by the way); a gentle, loving, kindhearted young man who tries to help others however he can; who frequently behaves like he is only 10 years old. He doesn’t fit well in this world.
No, that’s not right. It is the world that doesn’t fit in well with him. The world could adapt. It looks like he might not ever be able to do that.
So, I want to know why? Not “why him,” which is whining. Just why? What is this condition and why haven’t we any more answers, or help, or funding for research, or programs to assist the families and their Aspie kids?
I hope I am wrong about his ability to adapt. Many Aspies can learn to compensate for their brains’ wiring problems and do quite well in this narrow-minded, unforgiving world. It is my fervent plea to the Universe that Grandson is one of those, and that I can live long enough to be of use in that quest. And that we who are not Aspies can learn to fit into their world.
Maybe then “why?” won’t matter so much.
Take, for example, my grandson’s autism. He is an Aspie, short for Asperger’s Syndrome, his section on the autism spectrum. I long ago accepted that he has this permanent condition. I am beginning to accept that he might never learn how to get along as an Aspie adult in the predominantly non-Aspie world, a world that doesn’t want to make room for the “imperfect” (note the sarcasm in my voice, please) among us. It pains me to think this, but I see evidence of the possibility; probability, more accurately.
For instance: he attends a social program designed to help Aspies (and others on the spectrum) learn to cope with the rest of the world. This program closes its doors at a certain time with no admittance if a client is late. The purpose of this rule is to help the children learn to follow rules, to be punctual and to be considerate – all useful attributes for the work place, as well as school and home. Besides all that, it takes a while to get the kids settled into the program’s routine each day, and latecomers delay and disrupt the routines. So, grandson is very conscious of getting out of the house and down the street to the Amazing Kids’ Club on time.
As I was getting ready for work yesterday morning, about to leave the house, grandson calls.
“Nanny, I don’t know what to do,” he begins breathlessly. “The fire alarm is still going off and I can’t get back in to the apartment until it stops and I’ve got Curly with me and I have to go to Kids’ Club. I can’t be late and Mom’s in Lebanon at the VA Hospital.” Heavy, fearful breathing almost drowns out the words. “Can you get my cat? Do you have to work today?”
I tell him that I can’t help him with the cat (his therapy pet) and ask if he thinks it will be okay for him to take the cat with him to the club. Is Curly in his carrier?
“I can ask Mr. B [club director] if it’s okay to have Curly there. I don’t know what to do. Should I call Mom?”
He is trying not to panic; I can hear it in his voice. He tells me his mother won’t be back from Lebanon until late in the afternoon.
It didn’t occur to him to call Kids’ Club about his situation, to see if he could arrive a little late because of the apartment building’s rule that no one is allowed in until the fire department gives the all clear. He didn’t think to ask if he could leave his cat with a neighbor until he or his mother could get back. He was afraid his mother would be angry if he didn’t go to Kids’ Club as he was supposed to do, and afraid that Mr. B would either be angry, too, or wouldn’t allow him in. Grandson looks forward to Kids’ Club, a bright spot in his day. He was confused and anxious. He can’t think clearly or rationally when situations arise that are not in his routine. Just one of the curses of this neurological disorder he endures.
My grandson is almost 19 years old and over 6’4” tall; extremely intelligent (most Aspies are, by the way); a gentle, loving, kindhearted young man who tries to help others however he can; who frequently behaves like he is only 10 years old. He doesn’t fit well in this world.
No, that’s not right. It is the world that doesn’t fit in well with him. The world could adapt. It looks like he might not ever be able to do that.
So, I want to know why? Not “why him,” which is whining. Just why? What is this condition and why haven’t we any more answers, or help, or funding for research, or programs to assist the families and their Aspie kids?
I hope I am wrong about his ability to adapt. Many Aspies can learn to compensate for their brains’ wiring problems and do quite well in this narrow-minded, unforgiving world. It is my fervent plea to the Universe that Grandson is one of those, and that I can live long enough to be of use in that quest. And that we who are not Aspies can learn to fit into their world.
Maybe then “why?” won’t matter so much.
7 comments:
And we want nothing more to make it all right.
There seems some hubris involved when we call a condition a problem, as though being outside the established and undefined regular, that which is expected and acceptable, is in some manner a thing to be pitied, if not found shameful. Our fellow travelers just don't seem so broad of perspective at times.
My fave coauthor has muscular dystrophy. He wobbles a lot, and does more so each year. I should be so disabled as he. His productivity is tenfold mine. He spoke once of watching his grandmother trail her fingers along the wall to keep her balance and perspective as she walked. He does the same now. Not so long ago, I caught myself doing the same. Accommodating some condition in some manner to keep us moving. We are all headed there, some faster than others.
Stephen Hawking does not consider himself disabled. Taking what he's given this world and comparing it to what I have given this world, if anyone in that dyad is disabled, he is me.
Still, you received that call. You were asked for help. You knew the young man had to figure it out. You let that happen, no matter the feelings welling within you. You will do it again, and in doing so, you will improve matters, except for maybe that under-arching of wanting to do more.
I hope you had a taste of something healing later that day.
BTW, Curly is a Good Kitty, and there's a minor itch just a touch under that fuzzicaled chin that needs some extra attention from the pad of your right index finger. You know what to do.
Human variation. The intelligent one who focuses so intently upon one thing, and comes up with an innovation so world changing, his close genetic relatives have a huge evolutionary advantage.
And in a less structured, less time intensive society, he would be allowed to simply get on with things as he sees fit. A little odd, but with an arranged marriage, he'll be fed and dressed. The Absent Minded Professor is a very old trope. Often beloved.
I met my friend with Asperbergers when he was 19. Twenty years later, and the change in him is remarkable. Even at about 24, he'd made huge strides. He built online friendships, since none of his oddness shows through in his writing. He has more social life than I ever had. His other health problems are much more of an issue.
I don't have any answers, I just know how strongly I identified with him, with a fire alarm ringing and an animal he was responsible for, a situation he hadn't bargained for and a rising sense of panic. I can't tell you how many times I've just flunked it when unexpected situations arise, or not foreseen things I should have, and how I've berated myself afterwards and come to the conclusion I must be simply incompetent. Some things get a bit easier, others don't.
That's not to make light of his condition or the problems it presents, but the world really is a difficult place for so many of us in different ways. I'm still waiting to feel like a properly qualified adult. People can indeed be harsh and judgemental, but they can also be more understanding and prepared to care for one another than we expect. He may well find his way, a good one.
Very lovely cat!
I note the word "imperfect" returning like a boomerang and I recall your comment on Jana's plight. The word presumes there is such a thing as a perfect state. We are all defective in some way or another and it behoves us to acknowledge the fact. In my case increasing deafness which to the non-deaf is often equated with stupidity. Ah the irony: to be different is to be stupid.
Everyone:
Thank you for your comments. As usual, they make me think/rethink what I've written. I always learn something from the exchanges.
you write so movingly about this ....
i share your outrage and your tenderness. it's a poignant piece and you convey the reality with amazing empathy. keep writing. this is advocacy even if it doesn't feel like it sometimes.
I can really relate to this as you know. I have had similar experiences with my own son. There is a grieving process that takes place, for what might have been before the acceptance for what is settles in. They seem to be able to adapt to some degree, but not completely.
If only the rest of the world could try to understand them.
Post a Comment