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On my morning commute I usually listen to the day's meditation from this site. I am not an Ignatian practitioner - I don't think it would work for me - but I find it good to at least have some space for guided reflection in my routine.

I have been thinking all week about last Monday's reading, Mark 9:14-29. It's one of Mark's irritatingly cryptic healing narratives, where the disciples are rebuked (with no apparent justification) by Jesus for their lack of faith. That wasn't the bit that grabbed me: what interested me was the description of the symptoms of the child with an evil spirit which "has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid."

Usually interpreters take this to be a case of epilepsy, but as the parent of two children who cannot speak due to autism, it seemed to me that this must also be a possibility. B in particular can get into such a fury with the universe that she pounds on walls or the floor, doing herself damage like the child in Mark's account who would throw himself into the fire or the water - actually both our girls will perfectly happily throw themselves into the water with no regard to their own safety, but for fun rather than in rage. I'm struck by the way in which the child goes into convulsions as soon as Jesus comes into view, just as an autistic person can get deeply upset by new people or new routines. (And I don't know a lot about epilepsy, but I had the impression that it doesn't usually go with speechlessness.)

Obviously it's a bit pointless to diagnose a medical condition reported at second or third hand several decades after it happened two millennia ago, and it is not the point of the story anyway. The point of the story is the cure that Jesus effects on the child, who lies there at first seeming to be dead; but Jesus lifts him up by the hand. The moral lesson is the slightly obscure question of the level of belief of the disciples, and the child's father; in the raising up of the child from apparent death, there is also a clear foreshadowing of Jesus' own coming resurrection, which indeed is made explicit a couple of verses later.

The bit about the child's hand seemed very familiar to me. Both our daughters will take your hand and move it towards whatever it is they want done - a door that they want to have opened, food to get out of the kitchen cupboard, a particular video or DVD to put on. And I found myself wondering to what extent the child was actually "cured". If B were as easy-going and generally happy as U, she could probably still be living with us; if she were suddenly to become as able as U (who is still very very disabled), we would see it as a major advance.

Yet if they were not autistic, they would be completely different people; it would be very different from, say, healing someone who cannot walk, or has been born blind, or has leprosy. Part of accepting our children's situation has been realising that it is a fundamental part of what they are; at a very early stage I became suspicious of snake-oil merchants offering "cures". Elizabeth Moon writes about this from the autistic person's own point of view in her Nebula-winning novel Speed of Dark, and Charlotte Moore gives the perspective of a mother and a younger brother in George and Sam; I quoted her best line when I reviewed her book, but here it is again:
These mysterious, impossible, enchanting beings will always be among us, unwitting yardsticks for our own moral behaviour, uncomprehending challengers of our definition of what it means to be human.
Mark doesn't tell us that the child who Jesus encountered was completely "cured"; just that he went home quietly with his father and (by implication, though not explicitly) started to speak a little. I think any parent in a situation like ours would be profoundly grateful for even a small shift in that direction.


( 4 comments — Leave a comment )
May. 25th, 2008 10:46 pm (UTC)
That was a thought-provoking post; thank you.

I never cease to be amazed at how well you deal with all this as a family. If V and I manage to cope with our future challenges half as well as you do, I'll be chuffed.

I've been struck by how dramatically B can react to certain people at certain times - whether with anger or delight. It's easy to imagine her being frantic at first, then later calming down dramatically and becoming astonishingly responsive and friendly - even both as responses to the same person. And I enjoy wondering how she might have reacted to Jesus.

Nonetheless, as artw would say, and as I'm sure you'd agree: I still think it was a miracle.
May. 26th, 2008 02:19 am (UTC)
I have never asked why B was away from the family and while someone mentioned a second child affected I did not enquire, but here you talk about it so I feel freer to comment. Autism is a difficult and complex problem to find one of your children has, let alone 2. When I moved to my current house I found 2 neighbours with 3 children between them with different but equally serious and affecting problems. It is a group of only 16 houses.

It astonishes me the level of dedication and patience and sacrifice it takes on a daily basis to raise children. The additional requirements and responsibilities on parents when the children need more from the world than usual leaves me awestruck by the energy and attention needed and given. The decisions which need to be made daily are so hard and sometimes heartbreaking.

It is 3 am and I'm not saying this well but can I just say how sorry I am that you have to deal with the additional difficulties you have been given and how I hope for a breakthrough in education which may help both B and U. More, how impressive it is the grace with which you handle it all.
May. 26th, 2008 06:56 am (UTC)
The world would be a much less interesting place without you and your children. It is difficult to say anything supportive or even sensible, after your entry. For what it is worth, it has given me a deeper insight into the world of autism. Feel free to share more of your thoughts with us, if you like.
May. 26th, 2008 07:53 am (UTC)
Guido said it all. However, you can count on me to say something less than sensible, so: Maybe instead of curing them, someday they will find a "cure" for the rest of us so we could visit them in their worlds. Your kids are wildly interesting and it would make for quite an adventure.
( 4 comments — Leave a comment )

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