Does it get easier?

Lately, I've told a few people with young autistic kids that it gets easier.  I've always thought the hardest age is around 4, and from that point on, it gradually does seem not quite as tough.  However, I don't like to tell people falsehoods, and I spent a long time  yesterday trying to figure out in my mind----Does it really get easier?

In giving my answer, of course I need to say I have only my own experiences to go by.  Janey is not typical, even with the autism world, I don't think.  No child is typical, but Janey has not really followed even the autism guidelines.  She has not "improved" significantly since she was diagnosed, in terms of speech or academics.  She is on the low end of the spectrum, so that has been my experience.  My other child originally diagnosed with autism is also not typical, as I think he was a wrong diagnosis, but if he wasn't, his improvement is far beyond what you'd usually see, in that he hasn't been on an IEP since 5th grade and will graduate this June with an over 4.0 GPA.  So maybe I am not the person to ask if it gets better, but I will answer anyway!

And my answer is yes, but not for the reasons you might think.  I don't think it gets easier because the child themself gets easier.  I think that's what I used to think, and of course they do, in a lot of ways, maybe more for other people than me, but they do.  But what really makes it easier is that you settle into your life, you find the right situations for your child, you change your definition of "easy."  It feels easier, although it might not, from some unreal strictly mathematical viewpoint, it might not be.

You settle into the life.  When a child is first diagnosed, it seems like an acute illness.  You feel like you have to do something NOW (and the media and some of the autism community feeds into this).  You feel there is not a moment to waste.  You are rushing around, finding a program, setting up appointments, finding a school, making big decisions.  It's hectic and scary.  Then you are transitioning into all the programs you set up, and anyone knows most autistic kids don't like new places or new experiences.  It's a confusing, scary, terrible time.  But jump from that age, around 2-4, to age 8, where Janey is now.  Unless you've been extremely unlucky, your child is in a school you like.  You've settled on an approach to the autism, you've met other families hopefully, you are an old pro.  Your life is not as hectic, and your child is not starting some new program every other day.  It's the comfort of routine.

The other part is a little harder to think about.  But I think it gets easier because you start expecting less from your life.  Nobody wants to think this.  We don't want to think that our child with autism is going to change our whole life, but like it or not, they will.  When you make the jump from first diagnosed to around age 8, you have already changed your life.  You no longer expect things to go smoothly, and when they do, it feels wonderful.  You have probably pared down your friend list to those who at least try to "get it", so you aren't dealing with people who are unwilling to accept your new reality as much.  You have changed your hobbies and cooking and work life and every other part of your life to accommodate your child.  It's the new normal. And when a day goes well under the new normal, you feel good about it.  You delight in little things that in the past would have gone unnoticed---drinking a full cup of coffee uninterrupted, the delightful 90 minutes a video takes to play out when you get to read a book, your child saying something new or not reversing pronouns or getting half dressed by themselves or using the potty.  Littler things can make you thrilled.  I'm not being a Pollyanna here.  I've read that after hugely good or bad fortune in a life, most people eventually return to the same level of happiness as before the fortune, and I think that's true.  You start to have a normal life again---a new normal, hugely modified, but it doesn't feel that way.  It just feels like life, most of the time.

So yes, I think it does get easier.  Or at least it FEELS easier.  And that's about the same thing, really.

My imaginary trip into Janey's mind

I try all the time to figure out what Janey's mind must be thinking, to get a better idea what it would feel like to be her.  Lately, I've been using analogies of a library or a computer to try to get her unique way of thinking.

The library first----I picture myself walking into the library that is Janey's mind.  The first thing I notice is how many books there are.  There are books with lines from pretty much every video she's seen, every song she's heard, every conversation she's been present for.  There are books all over.  So, I try to look up a subject I want to read more about, and notice that there is next to no cataloging system.  No computer guides, no card catalogs, no librarians at the desk to guide me.  There is maybe a very general guide up on the wall to the rough area the books I might need are, but that's all.  So I wander at random, hoping to find what I need.  Frustrated, I mutter out loud "Where's the books about kings?"  Suddenly, a pile of books appear before me.  They all contain information on kings---there's one about We Three Kings, one about King Friday, one about the King of Joke-a-Lot, one about Burger King.  None of them might have what I'm exactly looking for, but I can recite a lot of lyrics, or suddenly get hungry for onion rings, or request a video out of the blue.  While I'm trying to figure out what to do next, there's a noise I don't expect.  Maybe it's a fire alarm, or a truck outside, or a crackling paper far away, but I hear it, and it distracts me from any more looking.  It's very distressing, not being able to find what I want, and I give up and cry.

Or the computer.  Janey's mind is a computer with a huge hard drive.  It's crammed full of hard info---as much raw information as any 8 year old would have, and more than many.  However, there are several problems.  The processing speed of the computer, the ability to connect and manipulate and interpret the data, is hugely slow.  It's like a 286 motherboard with a 1TB hard drive.  There is also only the most minimal of search engines.  It works like the old ads for Bing search used to, in making fun of Google---you search for "cat", and get all cat information from anywhere "The Cat in the Hat!"  "Cats at my house!"  "The Cat that Looked at the Queen"  "Cattails!"  It's also very hard to add certain kinds of information to the computer.  It has trouble storing pictures, much preferring audio files.  The greatest strength of this computer, though, is its music files.  They play more smoothly than almost anything else. The computer freezes up often when you try to do too much at once, and needs rebooting.  And programs that work one day might not the next, depending on what subroutines are running.  The computer is prone to viruses---if you type in commands in a harsh tone, or let it run too long, or vary the power, it just won't work.

These are guesses.  I don't know if either of these analogies are anything like Janey's mind, but I think they might be.  I use them to try to figure out how best to help Janey.  The crucial thing both mind models need is a better working search engine.  I need to figure out how to let Janey access what she knows.  I need also to minimize noise or viruses or anything that will slow down her systems.  I need to let her make use of the areas that she has in excess---to help her use her auditory memory and musical memory to help find information, and I need to find a way to help her increase her visual skills.  I need to try, slowly and gently, to do some construction and organizing at the library or some upgrading with the computer, to help her still be the same Janey I love, but to build on what she already has.

My autism resolutions for 2013

I am not big on making New Years resolutions.  I don't ever like to delude myself, so I don't like to make ones I know I won't keep.  That's just a setup for feeling awful about yourself, I think.  But I've had some thoughts about what I want to do in 2013 in regards to Janey, and in regards to autism in general.  Four ideas, to be exact....

1.  Delight in Janey whenever possible.  There is so much hard about raising Janey, so much that is tiring and overwhelming.  But there is also a lot that is wonderful.  I am lucky that way.  I am going to try very hard to delight in her, when the opportunity presents itself.  I'm going to enjoy her singing, her amazing smile, her delight in little things, her eccentricities, the rare moments her talking comes through, the multiple moments that she uses the speech she has to get her point across.  I'm going to enjoy dressing her up, and giving her foods she loves, no matter how odd, and showing her off.  I'm going to sit more with her watching her favorite shows and laughing along with her to them.  I'm going to find more music she likes and listen to it with her.  I'm going to read her or tell her the kind of reading she enjoys---poems and fairy tales and rhyming books.  I'm going to let myself just plain have fun with her.

2.  Be easier on myself when the autism parenting gets tough.  Somewhere along the line I got the message in life that you must always carry on, keep going no matter what, don't allow yourself to wallow or admit being overwhelmed.  I don't think that's serving me any more.  If Janey doesn't sleep all night, and I have to sleep most of the next day, I'm not going to spend the day cursing myself and trying to stay awake and get things done.  I'm going to admit to myself that Janey is one tough kid.  She's a kid that overwhelms people like her doctor in just a 10 minute visit.  She's a kid that very few people, without the training in fire Tony and I have had, could handle at all full time, without breaks, without help.  She's a delight often, yes, but she's very, very autistic.  She's a toddler in a 8 year old body.  She require constant supervision.  If I need to rest and spend a day doing nothing more productive than playing Scrabble and reading, I am going to tell myself that the rest of the time, I work a job that respite workers get paid good money to work, and I deserve a day off once in a while.

3  Speak up about autism issues more.  I don't know how often I bite my tongue when confronted with someone advocating the latest "cure", when someone suggests I should find a babysitter so I can "get out more", when someone says that if I really tried, Janey could sit nicely at a table, use the toilet consistently, when people tell me how special diets, intensive ABA programs, Floortime all day long, getting a dog, going to Mongolia to ride horses, swimming with dolphins, etc, might be just what Janey needs.  I admit not everyone has told me those things personally, but they are all out there in the world of "autism cures".  Often, I just smile or say thank you.  I don't step in. I don't comment on Facebook conversations that I see that are pretty much attacking other autism parents for not trying this or that.  I keep the peace.  I feel a little guilty about this. I dare say I know more about autism than someone who once read an interesting Reader's Digest article about it, and I should not be afraid to speak up.  If it's hard for me to do, I can think about my friends with autistic kids, especially those just starting out on the good ol' Holland trip, and speak up for them.

4.  Treasure my fellow autism parent friends.  I thought a lot about the past year last night.  I thought how few people get my life, about how I have noticed that after spending time with our family when Janey is with us, often the invitations to spend time together don't happen again, how I always have my guard up when people are around Janey, how I always watch what I say, how she acts, how I'm always prepared to flee if she gets difficult.  How it's extremely isolating being her mother.  And then I thought about the people I know get it.  I thought especially about the first friend I made through this blog---that's you, Michelle!---and although we haven't met in person yet, how the few times I've talked to her by phone and the emails we've shared and the Facebook statuses we can read from someone who really, really does it have kept me going on many a tough day.  I hope to become real friends with anyone out there who reads this and can relate to it.  We have to be there for each other.  I realize more every day how important that is.

With that, I'll start 2013 with optimism and a smile, and with love to everyone sharing this journey.

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.

Strange Attractors

Although Janey will often ignore things that you want her to focus on, once in a while, she is strangely attracted to certain objects.  She will find them wherever they are, and will resist all attempts to keep them away from her.  This year, it was one present under the tree.  It was for Tony, and was wrapped in the same paper as many of the other presents, was a simple box shape, was nothing that stood out in any way.  But as often as I put it back under the tree, she took it out, held it and then moved it to a new place.  She didn't try to open it---she just was drawn to it in the wrapped form.  Today, I realized Tony never opened that present, because by Christmas it was no longer under the tree.  It's no longer anyplace that I can locate.  It's very possible that it wound up in the trash, as sometimes that is a place Janey puts objects she is interested in.  I got a brand new pair of sneakers a few years back that she took a fancy to.  I only wore them once before one of them disappeared, and despite a housewide search, was never seen again.  I think it had that same fate as the present.

Lately Janey has been drawn to my camera.  I tell her "THAT'S A NO!" in a loud voice whenever she gets close to it, but usually if she grabs it, she just holds it.  I had no idea she actually knew how to use it, not until a few minutes ago, when I heard a tell-tale "swoosh" sound it makes to imitate the old time sound of film being advanced.  Janey was standing next to me taking a self-portrait.  I took it away, spoke to her firmly, but couldn't resist seeing what she had taken.  Several of the picture were of her finger firmly pressed against the lens, which is just the reason she can't use the camera, but 3 or 4 were pictures of herself.  That impressed me a little---she knew how to turn on the camera, knew she needed to turn it around to take a picture of herself, and even kind of how to frame the picture.  I might get her her own heavy duty kids camera.  In the meantime, here's a few of the self-portraits...

Christmas night

So Christmas 2012 is almost over.  As is almost always the case on Christmas night, I feel a little let down.  There's such a buildup to Christmas, and it's over so fast.  But it was a very nice one.  We had a great day, and gave the kids more presents than we usually do---we are usually very restrained in that, but I decided this year to put more focus on getting them, especially the boys, things they wanted and needed.  It was fun.  We had a huge amount of special food, a great visit last night with our dear friends for Christmas eve, Janey and I had as much Christmas music all year as can be imagined, and overall, it was a very good Christmas.

The picture is Janey watching the Christmas karaoke VHS we watch every year at our friend's house.  It's kind of a joke with the kids now, as it's very hokey, and has very cheap visuals, and does strange versions of each song, and then once they've done the long, long song, a screen comes up that says "Now everyone sing!" and we sing it all over again.  Lots and lots of laughs, but lots of fun singing together too.  Janey had been napping, and woke up when we were singing, and she was in heaven---it was her dream to wake up to a room of people belting out Christmas music!

Still, with all this being said, there is sadness for me at Christmas.  I don't think it will ever totally go away.  Janey has no real awareness of the holiday traditions.  She doesn't get Santa, she doesn't have any curiousity or interest in her presents, she can't count the days until Christmas, she isn't sad it's over because in most ways she didn't really understand it was here.  She was manic in the night, laughing hysterically for hours, probably because we weren't careful and forgot and let her have lots of chocolate milk, and chocolate and other caffeine is the one solid food connection I've ever found with her---it makes her crazy way out of proportion.  She cried at points today.  We were all exhausted by afternoon, but we couldn't nap, because she had to be watched.  She had pullup issues.  She was, basically, herself.  And she always will be.  She is delightful, sweet, interesting, but she is also autistic and intellectually disabled.  She is never going to get Christmas the way I dream of.  Like so many things, it's my dream, not hers.  It's my sadness, not hers.  But my latest way of thinking is to admit the sadness, and try to move on from it.  It makes me sad that she doesn't understand Christmas.  It makes me very sad.  But Christmas isn't her getting it.  Christmas is, in the words of the Grinch, a little bit more.

A Christmas Present for you!

Here's a present for you, my dear readers!  It's Janey giving you a Christmas Panettone!  For those of you who didn't marry into Italian families, a Panettone is a Christmas type sweet bread, with raisins and glaze.  I am not that huge a fan of them, but they are sort of like fruitcakes or cranberry sauce or candy corns---holiday foods you just have to get whether you like them or not.  Janey is in love with the boxes.  She spent a lot of time yesterday doing very, very rare pretend play with them.  She'd bring a couple boxes (one empty, one still with the bread) over to one of us and hand it to us, then we were supposed to give it back to her and say "Here's a present!  Merry Christmas!", and then she'd take it to someone else.  A pretty basic game, but a great one to see her playing, maybe getting ready to actually open and perhaps even break a smile at some of the presents for her tomorrow.

Merry Christmas to everyone, or Merry other holidays if you don't celebrate Christmas!  I can never be sure how many people actually read this, but it's always amazing and hugely thrilling to me that anyone does.  I appreciate the chance to write here and share my thoughts, and I hope anyone reading this has a wonderful day tomorrow.