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Sunday, March 2, 2014

OCD and LFA....combine for frustration...

Lately, it's becoming more and more obvious to Tony and me, and probably to almost anyone who spends any time with Janey, that she has Obsessive-Compulsive Disorder, OCD.  I don't normally like to play psychiatrist and do freelance diagnosing, but I have more than a passing familiarity with OCD, and it's getting pretty hard to miss.  Combining it with Janey's low-functioning autism and her intellectual disablity---well, let's just say things have been a little tough lately.

How does the OCD show itself with Janey?  Her particular brand of OCD seems to be the arranging brand. Here's a good explanation of that... link.  Janey needs to have certain things in certain places.  The biggest example of this is the remotes.  To watch TV, we use a TV remote and a Wii remote.  The Wii remote accesses Netflix and Amazon Instant.  Janey needs the Wii remote to be on the lower left corner of one table near the TV, and the TV remote to be on the lower left of the other table near it.  She will adjust them many, many times an hour, to make sure they are just right.  Another example is people's legs.  She cannot stand crossed legs.  If anyone in the room has crossed legs, she will go over and physically uncross them.  If they re-cross them, she'll uncross them again.

The odd part of these needs is that openly, she doesn't get upset over things being out of place.  She just "fixes" them.  This from a girl that can scream for an hour over not getting cheese cut as quickly as she wants...  But the OCD needs seem different, somehow.  She seems to just feel they have to be fixed, with a minimum of fuss and with infinite patience for our lack of understanding.  It's like it's her job---arranging things in a world that is constantly un-arranging them.

The most annoying need Janey has OCD-wise is lights.  They need to be turned off or on, in a system that is hard for us to figure out.  As best as we can figure, usually they need to be on in the daytime and off in the evening, but back on in the middle of the night.  This is pretty much the opposite of what we want.  I can't tell you how many times I've been trying to read something in the evening when Janey starts her light patrol and turns off the light.  I turn it back on, and within minutes, even if she's not in the room when I turn it on, she's back to check, and off it goes.  If she wakes in the night and the lights are off, she gets up and turns them all on, often waking us all up in the process.  She does this quietly and efficiently---no fuss, no screaming.  Just determination.

Touching certain objects is part of Janey's OCD also.  If you follow her around the house on her light patrol, you see that she needs to touch the same places each time.  Most especially, she is very focused on touching the side of a certain bookcase.  I am sure she touches this area hundreds of times a day.

A big part of OCD is the feeling that something will go very wrong if the rituals are not followed.  There is no way for Janey to explain to us what she feels will go wrong, and I don't even know if she can consciously form a definite worry, or if she just feels the compelling need for things to be put right.  But I suspect that very often, when she gets upset out of no-where, it's because she is somehow not able to perform a ritual or put right a wrong she feels needs to be righted.

It seems particularly cruel to me that fate has dealt Janey OCD---a disorder that my family seems to have a gene for.  It's hit us over and over (including myself).  But in Janey's case, more than even usually, the urges must be confusing and overwhelming.  I think she's dealing with them as well as she could be expected to do, but it breaks my heart that she has to deal with it at all.

5 comments:

Hillary K. said...

We have the same situation. My girl is 21 however and I need to let you know--it gets better! Well, it CHANGES. But with time, love, patience and the development of coping skills (both yours AND hers) the load will lighten. Baby steps...sending gratitude and strength to you.

Suzanne said...

Thank you, Hillary! I love love LOVE hearing that it gets better---or changes, anyway! That is very comforting to hear. I like how you said both her coping skills and mine. That is something I've noticed---even when Janey can't or doesn't change her behavior, it feels easier after a while, as we learn to cope and deal with it. Thanks for reading and commenting, and best wishes to you and your daughter!

David Fee said...

I hear a lot about autistic kids with rituals but my daughter doesn't seem to have any obvious ones yet. She leaves lights on or starts yells "turn it on" or "turn it off" whether the light is on or off. She doesn't seem to understand what on or off means. I read somewhere that OCD people want to control petty things because they can't control the larger changing world around them. There's safety in an immutable order.

Janet Singer said...

I'm so sorry that you daughter has to deal with OCD in addition to her other challenges. You sound like a great mom and I look forward to following your blog. I will keep you in my thoughts and wish you and your family all the best.

Lucy said...

My 9 year old daughter with autism can't tolerate crossed legs either!