At the Autism Whatever time of year, challenges, hopes, dreams and love

Over the years, writing this blog, my goals have been a few things.  One is to be honest---to write about how I really feel and how my life with Janey really is---to try my hardest to stay clear of any particular philosophy or approach that will limit how I feel I can express myself.  Another is to be respectful of Janey, to do my level best to represent her in a way she would want to be represent herself, if she were able to write.  And third, to give support and encouragement to others---to let them know that it's possible for things to get better even when they seem impossibly hard, to give them a virtual hand to hold when times are tough and to celebrate along with them when our girls surprise and delight us with their triumphs.

It's that time of year again---the time that goes by various names---Autism Awareness or Acceptance or no name at all because it shouldn't be a day, it should be all the time, or whatever.  It always makes me think I should write some kind of summing up post, some kind of meaningful conclusion post.  I had some things in mind, but today turned out to be a tough day.  Janey is not happy.  There's a lot of screaming, a lot of crying.  I am feeling discouraged, and that always makes it hard to stay positive...it makes it feel very fake to stay positive and upbeat, at least in the short run.

Where are we today? Overall, in a fairly good place, despite today's mood.  We had Janey's three year re-evaluation IEP meeting on Wednesday, and it was a good one.  She is making progress in ways she hadn't been for a long time---with talking, with learning skills, with expressing her needs.  Tony and I were very happy, as we almost always are, with the level of caring and understanding those working with Janey showed.  It's an example of this that one area she'd regressed a little in was "attention seeking", and her teacher remarked that is probably because she is almost always getting attention without having to seek it---that she knows more people in the school than most the teachers, and they all want to interact with her---that she draws people in.  That made me very happy, and it's something Janey really does do.  She's got an engaging personality, and we are seeing more and more of who she is as she gets older.

The biggest challenge I see for the next three years, if we look at Janey's life in three year blocks, is providing her with an interesting life.  At one point today, while crying, Janey said "I'm so bored!"  We've never heard that before, and I think it was a quote, but as so many of her quotes, it was used in context.  I asked her "Do you wish it was a school day?" and she said "WISH IT WAS A SCHOOL DAY!" very firmly.  Sometimes it can make me cry to think how limited Janey's life is.  She is nearing thirteen.  When I was thirteen, I started high school.  I had friends and crushes and homework and activities and hobbies.  I worked, babysitting and helping in my mother's store.  I wrote letters and diaries and read hundreds of books.  I walked for hours on the shore.  What does Janey do?  She goes to school and she comes home.  She watches videos.  She eats.  I need to expand her life.  We need to find activities for her, not busywork but activities she will really enjoy and be able to participate in.

Longer term, we need to start thinking about what Janey's life will look like as she becomes an adult.  How do you plan a life for someone like Janey?  At the IEP meeting, it was mentioned that sorting things was good training for sheltered workshop type work.  I have to say---that's not a goal of mine.  If you measure Janey's intelligence with any standard method, I know it would look like it should be a goal, even probably a rather ambitious goal.  But I don't think you can measure Janey with standard measuring tools.

I used to believe that people who said things like "There are many kinds of intelligence" and "IQ is just a meaningless number" were, well, I don't know...not correct.  But my thinking on that has changed radically.  Janey is very, very smart, in ways those tests can't measure.  She is smart in her own ways.  I can honestly say she has intelligence that can't be measured with tests.  She shows it with the song connections she makes, with the quotes that perfectly match situations, with her sense of humor, with her dancing and organizing and sophisticated palate.  I don't look at her, ever, and see a person with limited intelligence.

So---what do I hope for Janey?  I hope she has joy.  I hope she finds a way to pursue her interests and use her talents.  I hope she is able to find the care that she needs for the areas that she needs help with.  I hope she is always surrounded by people who love her and find her interesting.  I hope that she can rid herself of some of her demons, of whatever it is that makes her so unhappy often.  I hope she never encounters cruelty.

And what do I hope for myself?  I am realizing that's fair to ask, also.  I hope I can balance Janey's needs with my own.  I hope I value myself enough to do what I need to do to be healthy, for Janey and for myself.  I hope I am able to pursue my own interests and dreams without that hurting Janey.  I hope for a balanced life, one where of course my most important role is mother---to Janey and her brothers, but that I also am able to enjoy my own passions---that I can garden and read and travel and laugh with friends and have a life that is happy without that taking away from Janey's happiness.

I don't know what to call this time of year.  But whatever you choose to call it, I wish those with lives touched by autism happiness and love.

Staying sane while being there for Janey

Janey has calmed down a bit from some of the hard times last week.  It seems like PMS played a role, and it's kind of good to know there might have been a reason---so often, we have no idea at all what is upsetting her.

My son Freddy is home this week, and we've been talking a lot.  He's a great guy to talk to!  One talk we had made me reflect on my life quite a bit.  He talked about how when he went to college last fall, it was hard thinking about our lives back home, thinking about how tough our lives can be.  My instinctive answer was "My life is fine!"  Of course, ask me that on a bad day with Janey or a day after no sleep, and I'll give you a different answer.  But I bounce back pretty quickly, and when others have said similar things to what Freddy said, about what a hard life I have, I've given them the same answer.  I'm not being a martyr when I say most of the time, my life is pretty good.

I've been thinking about what I do to stay sane when stress hits, and the last few years, with four hospitalizations for Janey, her increasingly self-injurious and sometimes aggressive behavior, two boys starting college, the challenge of her sometimes not great sleep...there has been some stress.  But out of necessity, I've figured out things to do that help.

If I were giving advice about stress relief, the main thing I'd say is to find something you can do EVERY day, do without leaving the house and something you can cram into whatever free moments you have.  It's fine to get relief from something like hiking or shopping for clothes or going to yoga classes or whatever, but if something involves leaving the house, finding childcare, spending money...many of us with kids like Janey are NOT going to be able to do that thing regularly.



I've got quite a few at home go-to hobbies.  I love words games.  I play a lot of Scrabble on Facebook, and a lot of single player word games on the iPad.  I have also gotten into SongPop recently (a name that tune type game).  I love photography, and I take a lot of bird pictures in my back yard, as well as flower pictures and pictures of Janey.  Gardening is another stress reliever.  I can sneak outside when Tony is watching Janey or when Janey is at school, and something about digging in the dirt and watching seedlings grow is simply amazingly relaxing.  And I read.  I read a very, very lot.  I have a huge list of books lined up to order from the library, and as soon as I get one batch, I order the next, in order to never be without a book!

All of the hobbies I have are low or no cost.  You do have to buy seeds and a camera to grow flowers or take pictures, but once you do that, there isn't a lot more to buy.  Word games are free, and library book reading is too.  And all of those hobbies can be done in a few minutes here and there, stopping when I need to stop.

I am probably lucky I am basically an introvert.  I don't mind spending a lot of time at home or in fairly solitary pursuits.  I socialize on Facebook or on the phone, mostly.  I do wonder sometimes if having Janey has made me even more of what I already was---a little bit of a loner.  But even being social can be, with some adjustments, something I can do within the restraints of life with Janey.  I have an internet full of people to talk with, if I don't mind the lack of face to face.  I can go to support groups, and do at times, where I can talk to people living lives similar to mine.  And I sometimes actually get away, for lunches with friends while Janey is at school, or as I did recently, for weekend getaways when Tony can watch Janey.

Sometimes, the best times are WITH Janey, when her mood allows.  At times, we put on music and dance to it, or order takeout and eat with glee all together, or go for long car rides to see the state, never getting out of the car but enjoying the scenery.  These are all things that Janey loves and we love too.

There are days when all of this is not enough---days where Janey screams all day and even 5 minutes to play Scrabble is not possible, where the garden goes to weed and the camera stays in the case and the books don't get read.  Those are tough days.  As the years go by, I realize that I need to keep myself sane.  If it comes down to grabbing a minute to do something I enjoy or getting that extra pile of dishes done, I often pick the enjoyment option.  Some people might be able to defer fun, but those of us with kids like Janey can't always count on being able to do that.  It is good for everyone, Janey included, if I am happy, and as time has gone by, I feel less guilty about doing what I need to do to be happy.  I hope all of you have found ways to enjoy the time you have to enjoy.