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Sunday, December 30, 2012

Looking back on 2012---what Janey learned, what I learned

The year ending is, of course, making me look back and try somehow to sum up 2012, and figure out what kind of a year it was for us all.  In thinking about it, I do think it was quite a year of progress for Janey in some ways, and maybe more, a year of changed thinking for me.

Janey did some real learning in 2012.  The biggest jump was in her use of technology.  Some of this she might have already known, but I realized she knew it.  She can use the iPad with ease, she can pick videos on YouTube when given a bunch of picture choices, she can get to YouTube from a Google pages with an icon of it, she can, as I just recently figured out, turn on my camera and take pictures.  In today's world, being about to use devices like the ones she can is a good sign.  She also learned more academics than in past years.  She sort of knows some letters and numbers, she will do some worksheets at school, she can write J and once in a long time, kind of write her name, she is more interested in books than in the past.  She is still not even at anywhere near a preschool level in most areas, and she might not ever be, but that is more than the past.  The summer featured a toilet training jump forward, which sadly is not still going on quite as well, maybe with the need for winter clothes and our increasing insistence that she keep clothes on, but she does use the potty at school on a semi-regular basis, and sometimes uses it at home.  In the summer, there were days when she used the potty almost all day.  She also seems very slightly to understand her feelings more.  She is learning the words for sad and angry and happy, and uses them once in a while.  She cried less this year than most---there were still long crying days, but certainly less of them.  She learned to ask for songs in the car by name, and to say "do you like that song?" quickly at the end of a song to ask me to play it again.  She usually comes back when I scream "Janey!  STOP!" if she runs from me.  The mischief Dennis the Menace phase last year has certainly lessened, although it still happens at times.

Of course, there were still a lot of frustrating areas.  I don't think Janey's talking improved at all.  She still uses speech strangely and not that well.  She asks for things, usually with pronouns reversed "Do you want a Kipper video on?" and she repeats things, with delayed echolalia still being the vast majority of what comes out of her mouth.  She almost never answers us.  She still gets frustrated hugely and cries instead of communicating often.  She has gotten bigger and looks more autistic than in the past.  She makes a sound while out in public almost all the time, her "ahhhhh-ahhhhh" sound, and flaps her hands and pulls on her eyes. People pretty much always know now she is "different".  She relates very little to kids her age.  She tries to take off her clothes at home almost all the time.  Her sleep if anything is not as good as it was.  She goes to sleep too early often, and wakes way too early. She puts things in her mouth, more than ever, actually.  Constant vigilance is required to make sure she's not mouthing anything dangerous.  She occasionally hits me, harder now that she is older.  She has days where she makes constant demands, and is furious if we don't immediately obey her.  She is still very, very autistic.  The diagnoses of low functioning autism and intellectual disability are very accurate.

And what did I learn?  I think the biggest lesson I learned was to truly feel and believe that I am the expert on Janey.  The visit with the developmental pediatrician was a turning point for me.  I realized that she did not at all know what was best for Janey, or she decided what she felt was best through a very narrow viewpoint.  I understand Janey as well as anyone can understand her.  I am no longer thinking in any way there is some expert out there who can teach me about Janey, can help me help her.  I don't think such an expert exists.  If one does, I certainly haven't found them.  I don't mean there aren't people who can teach her, can love her, can take wonderful care of her.  There are---her whole school staff, basically.  But in terms of someone who is an autism expert and can tell me how to get more out of Janey, how to "fix" her or modify her behavior or figure out what makes her tick---I am that person.  I am the expert on Janey.  It's a lonely feeling, but it's a freeing feeling too.  I've not ever been the kind of person to search for a cure, but I have believed there are people that have seen Janeys before, that can tell me what her outcome will be, can give me gems of advice that will make her life and my life easier.  I'm pretty sure now there isn't.  Like all kids with autism, like all kids without autism, in fact, she's one of a kind.  And because she's one of a kind out at the edges of the bell shaped graph, each of her traits has less other kids sharing it. People can help me teach Janey, can help me care for her, and can share my love of her, but in terms of understanding her---that's all Tony and me.

I want to add a thank you to everyone who reads this blog.  Your friendship, comments and thoughts mean the world to me.  When I write here, I feel so much less alone, and I hope I have done the same for others.  To everyone in the autism family, and those who love someone with autism, all my heartfelt best wishes for a very, very happy 2013.


Sabrina Steyling said...

Following your blog this year has not only found me a new friend in you, but it has also taught me - about your family, about Janey, and especially about how complex and interesting autism can be. Not having a direct link to anyone with autism myself, I've learned so much through what you write! Thank you for letting me be a part of your world, and I wish you all a happy and healthy 2013!

wellymom4 said...

I love that you write "I'm the expert on Janey." Yes, you are. No one will ever know her like you do. My daughter is 15 and on the higher end of the spectrum and I too have said the same thing to doctors and therapists and family. No one knows our daughters like we do. Thank you for validating that for me. Manuela

Suzanne said...

Thanks, Manuela. It took me a long time to get there! I really believed for years that someday someone would be able to explain Janey to me. We really are the experts on our own kids---all of them, but especially the ones on the spectrum, and even more I think the girls on the spectrum!