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Monday, November 9, 2015

In an alternative timeline

I read a lot of books about time travel and alternative timelines and parallel universes and the like.  I don't really believe in any of them, but thinking about them fascinates me and often makes for some very good reading.  Usually, though, I don't put such thoughts to use on my own life, or Janey's life.  This weekend, I did.

I saw several pictures on Facebook on Saturday morning of kids preparing to take the Boston exam school test.  They were kids that started kindergarten with Janey, and it hit me that if Janey had stayed in their grade, if Janey had developed typically, she would have been taking the test on Saturday.  The test determines if you get into one of Boston's exam schools.  Janey's brother Freddy went to Boston Latin School, as did my husband Tony (William also got in, but chose not to go).  Freddy and Tony had a great experience with the school.  It's a special place---the oldest school in America (founded in 1635!)  And it's so far removed from any educational route Janey is taking that it might as well be on the moon.

I let myself spend a few minutes, after seeing those pictures (which were great to see, and I am truly happy and excited to think of kids I know Janey's age going to Latin), what it would be like if Janey were "normal".  More specifically, what would this past weekend have looked like?  Well, we would be nervous about the test.  We'd have taken her there early, to stand in line.  She would have had to go in herself, as the boys did, and we would have gone home and thought about her.  After the test, we would have talked about it, and maybe gone out to lunch.  Then, we would have done what we did in the regular timeline---picked up both Freddy and William at the train station, both of them visiting from college for a bit.  She would have listened to their college stories, and told them her own exam stories.

As I write this, I am crying.  Usually, I don't mourn the Janey that could have been.  It's a useless thing to do.  That Janey doesn't exist.  I love the Janey I do have.  But somehow, I got a vision of that Janey, what she would look like, talk like, be like.  And it made me heartbroken, for a few minutes, thinking about all she is missing.  She is missing so much of life.  She won't just not go to Latin.  She won't go to college.  She won't get married.  She won't have children.  Her life is not going to have the milestones, the joys, that so many people can take for granted.  And I usually would pipe in here, reminding myself and others that she also won't have some of the heartbreaks life brings, but I don't feel like it, right now.  Those heartbreaks are worth it, for the great joys that the things she will miss can bring.

And why?  That's another thing I don't usually dwell on.  But why is Janey autistic, and severely developmentally delayed?  What happened?  I have no shortage of possible reasons, but that doesn't really help.  Why doesn't she progress in the way that most kids with autism seem to progress?  Why, even in her autism program, does she seem so far behind?  What have I done wrong?  I know the answer is that it's not me, but of course, I ask that anyway, in private.  And I guess here, in public.

Most of the time, I can rejoice in the Janey I do have.  But sometimes, I feel life has been very unfair to her.  Not to me.  To her.  I wish I could say "But she doesn't know any differently!  She's happy as she is!"  But she isn't happy, much of the time.  She's not happy at all so often.  She suffers, emotionally and sometimes physically.  She might not know specifically what she is missing out on, but I think she does see that life is more frustrating to her than it is for many others.

And now I will bury these thoughts again for a while.  There are some things you can't think about very often.


Jenny Tither said...

I found your blog a few months ago, read it from start to finish and now read as you post. I love your writing - you are so honest. Thanks for sharing your story.

Suzanne said...

I appreciate that very much, Jenny! I always worry when I really pour my heart out, but I want very much to be honest here. I think that is the best way I can honor who Janey really is. Thank you for reading!

Arial said...

I too have a low functioning autistic daughter, along with three other children. I'm only 24 so it's hard to read what you wrote. She's only 5 and we're still trying everything we can to help her, but deep down I feel that this is it for her. I wonder everyday what caused this, because I always felt that I had done everything "right". I feel isolated when people talk about their autistic children, because they are "improving cognition", and "initiating conversations" while my daughter has never spoken a word and still digs in her diaper. I just want you to know that it's hard to see the good in these situations, but as bad off as you feel she is, I envy that you've at least heard your daughter speak, no matter how imperfect that speech may be.