Not Defined by Autism

There's a saying about autism that is very true---"If you've met one person with autism, you've met one person with autism"  I've been thinking lately how the word "autism" can mean very little, even when modified by the sometimes politically incorrect low or high functioning labels.  This fact was brought home to me strongly when I tried taking Janey to a vacation event run by the local autism agency.  It was an animal show---or I think it was, as we couldn't actually stay for it.  After a half hour free play time, which Janey tolerated because Tony came with me and stayed with her every second, all the kids were supposed to sit on the floor near the man showing the animals.  I was amazed that most of them did.  Janey, however, did not want to be there any longer, and showed that vividly by kicking me in the face.  I got the message and we left.  I felt extremely low for that ride home.  If Janey couldn't fit in in a crowd of kids with autism, where in heck would she EVER fit in?

After lots of thinking, I realized that was a harsh conclusion for me to come to.  Janey has a unique personality.  ALL kids have unique personalities.  But in picking "autism" as the word to describe Janey, only a little part of who she is gets highlighted.  She IS autistic---she's been evaluated at least three times and meets the criteria for that diagnoses.  But she's more....

Janey is VERY easily bored.  That fact came alive this vacation week.  Neither of her brothers were around, and Tony worked half days.  Although I did my damnest to keep her entertained, Janey hated this week.  Janey likes activity, movement, noise, excitement.  She doesn't need a lot of down time.

Janey has next to no patience.  If she asks to do something, and I don't do it immediately, she freaks out.  If she wants to snuggle, she wants to snuggle RIGHT NOW.  If she craves a walk to the ice cream store, it has to happen IMMEDIATELY.

Janey has a hair trigger.  This relates to the first two.  If Janey is bored, and if she wants to do something to relieve that boredom, and I don't do it immediately, she lashes out.  I was hit over and over and over during this vacation week, almost always because I wasn't doing what Janey wanted to do.

Those are three mostly negative facts of Janey's personality.  Here's some positive ones...

Janey enjoys being out and about.  She doesn't have a real craving for routine.  This is where the standard view of autism doesn't much serve Janey.  Her happiest day this vacation was when Tony and I took her for a long drive to parts of the state we hadn't seen before.  Just seeing the scenery, stopping here and there for a bite to eat or a run at a scenic turnout, resulted in a super day.  She did get mad at one point when she wanted her shoes off and that didn't happen immediately, but overall, the day was a dream compared to the other vacation days.

Janey is passionate and enthusiastic about things she likes.  If you have a view of kids with autism being self-contained, you aren't picturing Janey.  When music comes on that she likes, her excitement and joy are completely infectious.  She goes into a state of total happiness.  Last night, she discovered "The Pink Panther" on YouTube, and her hysteria over the antics she was seeing was something else again.  She can get excited beyond belief at pesto, at Chinese food, at TV shows, at seeing someone she loves.  She loves things hard.

Janey has a wonderful sense of humor.  She likes nothing better than the whole family being together laughing at something.  One way to get her out of a bad mood is to put on a funny show or movie we all like and laugh loudly at it.  She says things that I think are designed to crack people up, and she loves it when people laugh.  The other day, at the ice cream store, she got chocolate milk instead of her usual ice cream.  The clerk commented on that, and Janey said "I totally need a drink!"  The whole place fell apart laughing.  I swear Janey knew what she was doing.

I imagine that every parent of a child with autism could write something like I have just written---aspects of their child that define them, outside of the ones that autism dictates.  It's why what works for one child with autism might very much not work for another one.  It's why I have a hard time sometimes with advice that is general, advice about "what works for kids with autism" Janey's particular blend of attributes makes her who she is, not her autism.  She's a challenging kid----there's no question about that.  But I don't think it's her autism that makes her challenging, any more than it's her autism that makes her such a firecracker.  She's Janey.

Thanksgiving 2014

It's hard to remember too many specifics from Thanksgivings of my past.  Thanksgiving isn't usually a day that stands out in memory---the best Thanksgiving seems like the ones before it, in a good way. However, I don't think I'll ever forget Thanksgiving 2014---waking up without Janey here, driving to visit her, coming home without her.  I also won't forget it because of how grateful and thankful I feel.

It was strange to wake up this morning to a house without Janey, as it's been strange for the last week. Everything seems oddly quiet and calm, and I have been waking up after sleeping all night long, something that has rarely happened in the last 10 years.  I miss Janey horribly in the morning, though.  It feels wrong to have her gone.  I have my morning coffee, but somehow it feels unearned.  I've cut back to one cup most days, which is a huge cutback.

Freddy went to see his last Thanksgiving Day football game as a Boston Latin student, and we had a non-eventful morning---no kids TV, no Janey asking for bacon, no monitoring her movements and anticipating her moods.  I am trying hard to accept the respite and to let myself enjoy it, knowing she is safe and cared for, and for brief periods of time, I am succeeding.  But it's been so long that our life has had her as a focus, everything feels a little empty.

We had a Thanksgiving meal for 4 around 1.  We are not big eaters of traditional Thanksgiving Day fare---we had a roasted chicken, but with purchased turkey gravy, and some strawberry shortcake.  We said what we were all thankful for, but didn't have Janey to coax to say something.

After we ate, we drove to Providence to see Janey.  Every time we get to the hospital, I feel a knot in my stomach.  It's not because it's not a nice place, because it is.  I think it's just the feeling of going to see my child at a psychiatric hospital.  It feels like I have somehow stepped outside of the world I know, and entered a different world.

Janey was very happy to see us, all four of us.  She hasn't seen William for a long time, since he was at college.  She gave us a huge smile, and we went to her room.  We had brought her lots of food for her special meal, and she ate a huge amount of Daddy's pesto, some purple onions and lots of chocolate chip cookies.  We sang to her, and played catch with her Care Bear.  She talked very little today, but seemed very pleased we were there, at first.  Eventually she got tired of being in the room and eager for more action, and when we asked her if she wanted us to say goodbye, she repeated emphatically "GOODBYE!"

We took her out to the staff people, who said they would take her to join her group in the occupational therapy room.  Janey had gotten a bit agitated by then.  She kept grabbing our hands and saying "Take a walk!"  We explained we couldn't, but her friends there would take her for a walk.  She started yelling "Goodbye!  Goodbye" but trying to go with us.  The staff distracted her, and we said a final goodbye and left.  My heart was a bit torn up.

And now---Thanksgiving night.  I am going to try to rest and not worry.

It has been a strange Thanksgiving, but it has also been a very good one, in that I know more than ever how much I have to be thankful for.  I have my family---my husband, who has been incredible through all of this, my wonderful boys and my Janey---my girl who has my heart, and both warms it and breaks it so easily.  And I have my friends---and I count all of you reading this as my friends.  You have been INCREDIBLE.  Your support, here and on my Facebook page, is what has kept me going many a long day.  You have made me feel like sharing my story has helped YOU, when it is YOU who has helped me.  My dear friend Jamie has reached out to get help for me with bills and expenses---something I never, ever expected but I am very, very grateful for.  I have talked to many of you, in person, by phone or by email or Facebook message, and you have supported me so hugely.  So many people I've never met in person have shown their caring for my family and me.  I know more than ever that there are so, so many good and caring people in this world, and I am very thankful for that.

I wonder what Thanksgiving 2015 will look like.  I hope Janey is happier, calmer and most of all we are all together, that Thanksgiving and every Thanksgiving from here on for the rest of my life.