More talking, less sleeping

Last week was winter vacation week here in Boston, the most dreaded vacation of all, at least for our family.  It comes a time of year when there is nothing you can do outside, when the weather is dreary, when Facebook is full of posts from people going away for vacation and if you are not one of those people, and you are dealing with a teenage autistic girl who doesn't care for a change in routine....it's no vacation.

An odd thing we have noticed over the years is that by the end of most any vacation week, when Janey is home with us completely, she talks more. I don't know why this is.  I know she's exposed to more language at school than at home, and she gets a lot of one on one attention there.  But maybe it's having two or more adults around her at all times, trying to keep her happy, or maybe she relaxes away from school like we all do a little, or who knows what.  But this vacation was no exception.

Over the course of a few days toward the end of vacation week, Janey said all kinds of things that surprised and delighted us.  One example---she was looking at my collection of postcards on the fridge.  I pointed to one she was looking at and said "What's on that one?" and she correctly said "a fox".  I then pointed to a cat and a horse, which she also named.  I stopped, as to not quiz her for too long, but she kept going, pointing to another and saying "That is a bear!" (correctly) and then to one with two cats, saying "Those are some cats!"  Perfect grammar, and spontaneous talking!

Later that day, her brother Freddy called.  Usually a perfect way to have Janey be totally silent is to have someone on the other end of the phone that would like to hear her talk.  But this time, she was actually answering Freddy's questions!  She recited her address and phone number, she responded to him singing a song she likes, and then, when I asked her "Do you know where Freddy is?" she said "Freddy is at college!"  Freddy and I were both taken aback.  We've told her that, many many times, but I think that's the first time she's ever said it.  It made me really happy, partly because I always worry that she just thinks her brothers sometimes disappear into no-where.  It was good knowing she knows where he is.

The next day, William called.  Janey wasn't quite as chatty that day, but late in the call, just for fun, I said "Where is William right now? and Janey said, right away, "William is in Chicago!"  We were on Facetime, and I tell you, William's face reflected my own in showing huge shock at that answer.  I KNOW she's never said Chicago before, and I truly didn't think she had any idea where William was.  We were all so happy.

In the middle of those two days of talking, there was, as there always is, a night. I think I'm starting to be able to sense as soon as bedtime comes on nights like that one that something is up.  Janey was just not tired.  We followed our bedtime routine, but she kept jumping up, asking for things, turning on the TV, getting food from the fridge...long past her usual bedtime of 7 or so.  At 10, she was still awake.  At midnight, she was still awake.  At 4 in the morning, she was still awake.  You get the picture.  She slept not a wink all night.

You would think that she'd be tired the next day.  But she wasn't.  She was peppy and lively and wide awake all day.  I figured at least she'd go to sleep early, or at the very least at her regular time.  But no.  She finally went to bed that next night at 9 pm.  She had woken the day before at 6 am.  So she was up for 39 hours straight.

I've written before how Janey once in a while just skips a night's sleep like that.  I think this time was the record time awake, but it's not that uncommon that she's cheery the day after a night without sleep.  It's like her body and mind simply don't need sleep some (thankfully fairly rare) nights.  However, Tony and I do.  We spelled each other, but still, people in their mid-50s don't function with that kind of fractured sleep too well.

I do think there's a connection between the increased talking and the lack of sleep.  Janey's brain is a fascinating thing.  It seems like it sometimes goes into overdrive, into a mode where all the knowledge she has stored is far more accessible than usual.  I can see why you wouldn't want to sleep, if that didn't happen to you that often.  You'd want to stay awake, and maybe your mind would keep you awake.

Sometimes it seems like a huge part of Janey's autism is a brain that shifts between levels of alertness, levels of operating speed and ease, more drastically than most brains.  Any report ever written about Janey mentions that what she can do depends very much on the day.  Some days, she is barely responsive.  Other days, she is so engaged that it's startling.

If Janey ever got to the point where we could both sleep while she's awake...well, that would be great.  I don't think the occasional sleepless nights are going away, and I accept that.  But boy, I don't think even a week later now, Tony and I are much recovered.  Now for some more coffee...

I hate old videos

We are not big video-making people.  We haven't consistently documented any of our kids' lives, but we've done a few video taping sessions here and there.

We did a fair amount the year Janey was two.  Or I remember us doing a fair amount, and I've seen them around.  But I don't watch them.  I watched a bit of one, once.  I started to scream, watching it, and begged Tony to turn it off, which he did.  It was Janey, pre-regression.  She was talking.  Talking as well as any two year old talks, better than some.  There were slight oddities to her talking, but it was talking, fluid talking.  Her eyes were engaged, she was lively and cheerful.  She was pretending to be the singer in a band the boys were making, and if I can recall, she said something like "This is Janey and the Amazing Band!"  Not echolalia.  Regular, creative talking.

This morning, Tony was looking at an old private group he'd created on Facebook, one to keep track of Janey's health issues.  At one point, he'd uploaded some videos of Janey onto it.  They weren't dated, but I would guess she was 6 or 7 in the video I watched this morning.

What I knew, from reading old blog posts and from what I can remember, is that after her big regression at age 3, Janey's talking at one point recovered slightly.  It was in no way up to age level, and I think I'd convinced myself it was about like it is now.  The video showed me I was wrong about that.

The video starts with Tony filming our cats (we had more then---four of them).  Then Janey walks in the room.  She is carrying a frozen pizza.  She says "Want some pizza?  Open it!  I want pizza!"  She sets down the pizza and repeats that, and uses sign language a bit, or her own version, pointing to herself and then opening her hands to show "open"  I say "But what is the magic word if you want something?"  She repeats "pizza!" and then I start it for her---"Ple....." and she says "Please!"  Then, I say "Okay, I'll make pizza, but first, can you say your name for the video?"  She says something I can't understand at first, but then says "I want a banana milkshake!"  I sometimes call her Banana Pancakes or Banana Milkshake as a nickname---no idea why, but I still do.

It isn't just the talking in this video that's far more fluid and easy to elicit than it is now, it's her whole demeanor.  She is more relaxed, more engaged, more lively than I've seen her in the last 3 or 4 years.  She is, to put it plainly and in terms that I hope don't offend anyone, closer to typical, closer to what we call normal.

I fool myself a lot, or pick what I want to think about, or to be easier on myself, simply don't think about things a lot.  I know in my heart Janey's talking is decreasing over the years.  She talks less now than a year ago, much less than maybe 5 years ago.

She is not losing ground in other areas.  She understand more all the time, from what she can show us.  She is able to do more for herself.  She is calmer, mostly (although we had a rough weekend at points, and if I am again brutally honest with myself, we have a lot of rough weekends)  But she is more affected outwardly by her autism than she used to be---I have to admit that.  And it's okay.  It's truly okay.

The latest thing that parents who blog about autism often seem to be called is "martyr parents".  That hurts.  I don't ever, ever, ever want to seem like a martyr.  And I don't feel like one, I don't think I am one, even if I dig into the depths of my soul.  It is my great privilege to be Janey's mother.  I love her more than I can possibly state.  But that love includes wanting her to be able to express herself, to be engaged in life, to be open and able to enjoy what life has to offer.  I can't see her decreased talking, and more than that, her decreased engagement in others, as a positive.

Should I make myself watch old videos, to force myself to see what I don't want to see?  What good does it do?  I don't think that anything I can do, or the schools can do, changes Janey much.  Or that is wrong---what we CAN change at times, and I think we have, is how accepted she feels, how much of her time is spend screaming or crying or otherwise unhappy.  That is less than it was  in the past, for the most part.  But despite many, many years of speech therapy and ABA therapy and excellent teachers and aides and therapists and a family that does whatever we can to help her communicate---as the years go by, Janey talks less and less.  There are moments that stand out, great things she says, but I would say this weekend she said a total of about 5 different phrases.  There was "want to go for a car ride?", "want to snuggle on Mama's bed?"  "want a TV show?", "want a shower?" and "want shoes on?"  She did not answer any questions.  She did not label anything, or comment on anything, or say anything we haven't already heard many times.  This weekend was pretty typical.

I hate old videos.  I hate feeling like somewhere along the way, not just once but at least twice and probably more times, Janey lost ground she had gained.  I think I'll wait another decade or so before watching old videos again.

A long ago worry resurfaces

For the last year or so, every now and then, about once a month, Janey does a very odd thing with her eyes.  Basically, she rolls them up so high you can only see the whites of them.  This seems to happen more often at night and outside, when she's a bit tired.  It's a very alarming and scary looking thing, but most of the time, she seems fairly unbothered by it.  Once in a while, she does get upset.  One time it happened in the daytime, and she was trying to walk around, but couldn't seem to see as her eyes were turned up.  I sat her down and covered her eyes for a bit until she got control of them back.  We have tried to catch this eye thing on video, but haven't managed to so far, partly because it's often dark when it happens.

Janey had her IEP meeting on Tuesday, another very nice meeting, her last one in junior high.  She will be at a new school next year, high school someplace, and it's hard to say goodbye to the great team she has where she is.  I almost forgot in the midst of the meeting to ask if anyone at school had seen the eye behavior, but did finally remember.  Her classroom teacher (one of my favorite people ever, by the way) had seen it a few times.  

Later that day, I got a call from the school.  Janey's leg was jerking back and forth, and she didn't seem to be able to stop for a while.  It had happened twice that day.  I spoke to her teacher and also the school nurse, and both said they didn't think it was a seizure (which of course is our biggest worry).  She recovered from the jerking and was cheerful and wide awake.  Everything I've learned about seizures has said that after one, just about universally, the child is very, very tired and goes to sleep.  This hasn't happened with Janey, with the eye thing or with the leg jerking.  However, by chance, Janey's annual physical was the next day, so we agreed with the nurse to bring it up.

At Janey's physical, we explained about the eye events and leg jerking.  Her terrific pediatrician asked us some questions, and agreed it didn't really sound like seizures, but did feel she should see a neurologist.  She gave us a referral and said we should see one within a month.  As often happens, when I made the call at home, there were no appointments available until about 2 months, at the start of April.  I put in a call to see if this was okay, and haven't heard, so we will go with the April appointment for now.

When I was talking to the pediatrician, I brought up something from very, very long ago, when Janey was about 19 months old.  She wasn't walking then.  She was just barely sitting up, so obviously her physical development was very, very delayed.  We were referred to a neurologist then, and saw one, not at a hospital but at our health plan's office.  It's hard to remember the details of that visit, but she ordered an MRI, which we got.  And then I didn't hear, and didn't hear, and finally called over and over and FINALLY got a call from the neurologist.  

I remember getting that call fairly vividly, although I think I've tried not to think about it over the years.  The house was very noisy when it came in, with 3 kids doing their various things, so I went outside to hopefully be able to hear better.  We live near trains, so of course a train was going by.  And the neurologist had a very, very heavy Russian accent.  I could barely understand her under the best of conditions.  But from what I could hear, she said that the MRI wasn't normal.  She said something about there being gray matter where white matter was supposed to be, or vice versa.

It's hard to understand why it seems like there was never any followup on the finding.  I honestly can't even remember talking to Janey's pediatrician about it.  Her old pediatrician was, well, not great for Janey.  He had been very good for the boys, but by that time, he had risen in the ranks of the health plan and seemed to have little time.  He also just seemed to be overwhelmed by Janey's various needs.  I think what happened was Janey's physical development rapidly got better at that point, and as she headed into the year that she was two, her best year, we all kind of put the strange finding behind us.  Two was her golden year.  She walked, she talked a lot, she was even discharged from Early Intervention.  She was going to be fine.  And then, of course, around age three, the horrible regression happened.

But I did recall looking up what it meant to have gray matter in the wrong place, or white matter.  I found it was a condition called Gray Matter Heterotopia.  There wasn't much info then, and I think I didn't dig too hard.  However, I remembered something that had said that with girls with this disorder, often they start having seizures in their 2nd decade.  That seemed very far away.  Now, of course, we are in Janey's 2nd decade.  So I mentioned the long ago MRI to Janey's current pediatrician.  She looked up the long ago report, and read me a bit from it.  

The report said there was a good deal of gray matter where white matter should be, but not enough to make a definite diagnosis.  It also said there were changes to the frontal lobe, nonspecific changes.

Looking up Gray Matter Heterotopia now, there is still not a huge amount of information available.  Here's a Wikipedia article. LINK    It's hard to read, emotionally, what is out there. 

Janey has had another MRI since that first one, when she was 11, but that one was specifically looking for a possible tumor connected to an abnormal blood reading.  What I've read said that unless the MRI is specifically looking for the gray matter problem, it might not be noticed.

So---something I had put out of my mind long ago is now, of course, back in my mind.  One of the two medications Janey takes is an anti-seizure medication, prescribed in her case for help with bi-polar type symptoms.  But it could also be serving to mask seizures, her pediatrician mentioned.  Is Janey having seizures?  Is this the next thing?  I know seizures are fairly common in autism.  How does the gray matter issue figure in, if at all?  Is there something we should have been doing specifically for all these years that we weren't or aren't?  What is going on?

Amid a season of many worries, this one is hitting me fairly hard, I must admit.  Hopefully, we will get some answers soon, and we'll do the best we can with whatever we find out.  That's what we've been doing, and that is what we will keep on doing.  It's what all of us living this life do.

Assorted Janey Anecdotes

Sometimes the little stories and thoughts involving Janey that I have stored up don't come together into a whole that makes for a good blog entry.  That's been happening lately, so I thought I'd just put them together into an assortment of little tidbits!

#1.  The other day, we were visiting a friend of mine who is in the hospital.  As we waited by the elevator, a doctor walked by.  After he was out of sight, Janey said in a happy tone "A doctor!"  It was a kind of utterance I've rarely heard from her, just an observation, not a request.  I was surprised at that, and that she knew the man was a doctor based on the clues of his clothing and setting.

#2.  We went to the Savers thrift shop yesterday, my favorite shopping place.  While Tony looked around, I had Janey with me as I looked at sweaters.  She was excellent, as long as I kept up what I think of as my patter, a non-stop monologue on what I was doing, remarking on the clothes, asking for her opinions (which were not forthcoming) and generally just rambling.  A woman close to us kept looking at me in a way that seemed to say "Okay, that lady is kind of odd and I will just keep on eye on her" until I saw her looking at Janey and suddenly getting another look I'm very familiar with, the look that says "Oh, I see.  The daughter is not quite right"  I don't like that look at all, but I'm sure I've used it myself.  She followed it by a bright and fake toned "Oh, you are having fun looking at clothes with your mother, aren't you?"  I am not sure what I would have rather had her do.  I am being petty in my mind, but the whole thing bugged me.

#3.  Tomorrow is Janey's IEP meeting.  Since she is 14 now, she has the option of attending the meeting.  Her teacher is going to bring her to the end of it.  I am glad there is a push to include people of Janey's age and up in their own planning, but quite honestly, although it will be fun to have Janey there for a part of the meeting, I am not sure how much Janey will understand of what is happening.  It's one of those cases I run into a lot, where something is in theory the right thing to do but in practice often doesn't play out to help Janey.  But we'll see how it goes.

#4.  I put in the high school choice form.  We put first on the list the school I wrote about that I most liked.  You had to put at least 3 schools down.  I put 6, and listed last the school very close to our house.  I don't know if it was really my last choice, but I don't want it assigned to us just because it's close.  I hope Janey gets into our first choice.  I am telling myself I'm ready for a fight if she doesn't, but I hate a fight.  So I'm just going to keep hoping push doesn't come to shove.

#5.  The other day, it was very, very rainy and windy when it was time for Janey's bus to come home, and the bus tracker app showed that the bus had gone to the bus yard without dropping her off.  We were pretty sure they were really using a sub bus, and that she was fine, but she was about 15 minutes late coming home.  And Tony and I both were starting to feel panic, even though it was not a panic situation.  There is just something unspeakably scary about the thought of not knowing exactly where Janey is.

#6.  Janey loves to watch Tony play video pinball.  His favorite game is one called Funhouse, and the game often speaks the lines "Stop playing with the clock!  You are making me very unhappy!".  Janey's teacher emailed us last week that Janey kept saying those exact lines at school.  The teacher didn't know where they were from.  Tony was very, very happy to think of Janey quoting the game!

#7.  Tony was NOT very happy when Janey started singing along at the Savers to Billy Joel's "Piano Man"  He is not a Billy Joel fan.  I loved it, though.  The background music in stores is something Janey always notices. 

#8.  The pre-IEP reports from Janey's school said she will give her name and address and phone number most of the time when asked.  I know she can do this, but I've rarely heard it.  I was determined to, and kept asking Janey for her address, over and over.  She obviously didn't want to tell me, but I didn't give up for quite a while, until she got upset.  I don't know why I do this.  Partly I guess it's because she talks so little at home, less each year, I'd say.  I want to hear what she can say.  I am not satisfied just knowing she CAN say things.  I want to hear them myself.  I need to stop with that.

#9.  Janey's most common phrase at home is, as it has been for many years "Cuddle on Mama's bed?", meaning she wants Mama to cuddle on Janey's bed.  Cuddling isn't really cuddling, either.  It's laying next to each other as Janey stares into my eyes, looking at me as if I hold some secret she hopes she can figure out if she looks long enough.  She will do this, if I will stay still and let her, for hours. In the past, she usually got bored of me and went for her ipad after a minute or two, but now, she often doesn't.  It's almost always me who loses the staring contest, who gets restless.  I feel guilty about that.  I wish I knew what she was thinking, why the looking at each other is so important to her.  Eye contact certainly isn't an issue for her.

#10.  Life with Janey is absolutely calmer than it was in the past, especially during the tough years from 5 to about 11.  But sometimes, it also feels like there is less of Janey's personality showing through, that she is retreating into herself more, or at least making her needs less known.  As I said, she talks less, but also watches less TV, asks for less car rides, less food, less everything.  Sometimes I despair a bit over this, other times, I try to tell myself she is just a teenager, more self-contained than she was.  I think about this a lot.

#11.  I am glad there seems to be a growing awareness of the need to better understand those with severe autism, those who cannot always self-advocate, those who will not live alone or support themselves, but those who are just as deserving of a voice.  If we are not speaking out for our loved ones, if we are silenced in speaking for them, if we are made to feel that if we don't find a way to give them their own voice, we are not entitled to advocate for them...well, it's a complicated issue, with much caring and love for those with autism in all the differing ideas and voices, but I will keep forever doing both---working to give Janey her own voice while speaking out as best I can for her when she is not speaking for herself.

Mood Mirroring

Things have been stressful lately.  I won't get into all the ins and outs, but will just say this one source without getting political---if your retirement paperwork is not totally done and then the government shuts down, you don't get any retirement money.  Or any money at all.  We are fine for now, but it's not exactly fun. Add in literally about twenty other issues, and that's us lately.  But we are trying very hard to stay positive, and not just because we are Pollyannas.  It's because our moods so very much influence Janey's moods.

There are strangely many happy eggplant pictures out there.

I woke up this morning, nice and late as Tony let me sleep in, to a happy Janey.  A happy Janey is the most wonderful thing on earth---truly.  I wish you could all see her when she's happy.  Her smile is just plain amazing.  She smiles without any reserve.  When she is happy, any sadness of the past or future seems totally gone from her face.  She looks like you would look if someone told you you had both won the lottery and were going to live forever.  One of our favorite things to do is see her reactions to the little things she loves when she's happy.  One day, Tony told her he was making her some eggplant, in the middle of a happy day.  She replied "EGGPLANT?" in a voice of pure, pure joy and excitement, jumped up, started jumping up and down and hugged him over and over.  Over eggplant.

When Janey is that happy, you'd do almost anything to preserve it.  It's been harder lately to keep the stress out of our faces and voices.  Tony and I started talking just a little, about one of the myriad of things that are worrying us, and Janey saw and heard, and the look came across her face, the tensing up look, the look that is almost fear.  We quickly adjusted ourselves, said what we needed to say in happy voices.  She relaxed.

I can hear my own rebuttal to this all.  Life isn't all happy.  Stress and anger and fear are part of life.  That is true.  But the things that are worrying us are not anything Janey can understand.  They aren't anything she can do anything about.  And, to be honest, her happiness helps us.  It reminds us that life isn't all about our worries.  We need her happy as much as she needs to be happy.  So we do what we can to keep our own cares from her.

The inverse to Janey's happy moods, of course, are her sad moods.  Like the happy moods, not a single hint of past or future happiness remains when she is sad.  She screams and cries like it's the end of the world, because I think for her it feels that way.  She is overcome by her own sadness.  And we are overcome by it too.  It's impossible to feel happy when Janey is sad.  Over Christmas vacation, she was sad a lot.  She doesn't like times without school, or changes in routine.  We loved having her brothers home, and I know she loved seeing them too, but they changed the routine, changed the feel of the house, and that was hard on her.

The mood mirroring works two ways.  It's a feedback loop. We strive to keep Janey happy so we can be happy, we avoid making her sad so we aren't sad.  There's of course much more to it than that, but that's a part of it.  But unlike her, we can control to some extent our outward show of emotions, and we try to do so.  I believe in assuming competence.  But I barely understand the political back and forths, the state health agency constantly making us reprove we are eligible for the insurance supplement we get for Janey, the health complications of diabetes affecting Tony's brother, the school choice system which is complex and scary, the mental health issues that affect family members besides Janey, the need to eat and heat the house while we wait for the shutdown to end...I could literally go on a long time, but I'll stop.  I can't explain to Janey why it's harder for us to stay positive lately.  We can only try to keep her happy.

And in doing so, we can be reminded that when it all comes down to the nuts and bolts, we have a lot to be happy about. I'm not into unicorns and glitter and magic when it comes to autism.  Autism is autism.  You don't need to make it magical or better than the rest of us.  It's what it is---every one of us lives with challenges and strength, and Janey's autism provides some of hers.  But when we see her dancing in joy over eggplant, or a car ride, or a silly dance---we are reminded that the sources of happiness are all around us, if we let them in.  Aren't we all trying to ward off the sadness, to let in the happiness?  So we'll keep smiling, for Janey and for ourselves.

"Kitty" or When Will I Ever Learn?

A lot of my time with Janey is spent doing what she calls "Snuggle on Mama's Bed".  It's in fact her bed, not mine, but we do snuggle.  Generally, we just lie there next to each other and talk.  Or I talk, and sing, and tell stories, and read books, and so on, and Janey smiles and laughs.  She talks very little, most of the time, but she's very happy to just be there together.

Sometimes, this snuggle time can start to feel like a one man show.  It's a very well received one man show, but still, at times I feel like I'm running of material, and I wonder if it really makes a difference what I say or do at all.

Last night, after a good long time snuggling, I said to Janey "You know, I know in your mind you are thinking a lot of things, and listening to what I'm saying, and maybe wanting to ask me things, but you aren't saying them out loud.  I can't hear inside your head.  I can only hear things you say. I love to hear you talk.  If you said 'Kitty' right now, I'd be very, very surprised and happy!"

Some background---Janey loves me to act surprised.  I'll often go through pretend emotions while we're cuddling, saying that I'm going to show happy or sad or angry, but her favorite is always surprised.  I'll ham it up, opening my mouth wide and waving my arms around.

For a few minutes after I talked, Janey just looked at me with a huge smile.  And then she quietly and sweetly said "Kitty!"

Of course, I played it up---a huge show of surprise.  She smiled her huge, wonderful smile.

And then, as I so often do, I had to push her.  I said "You know, if you said the name of one of your brothers, I'd be VERY VERY surprised!"

I hate it when I do that.  And I'm always doing it---looking for just a little more, trying to force Janey to prove again what she just proved, what I already know, that she's almost always listening and understanding what I say, whether she shows it or not.

After I said the brothers line, I saw the look that breaks my heart, the look that shows she's shutting down.  Her eyes lose their glow, and look away.  She looks not happy but instead tense, worried.  She sees that now we aren't playing a fun game, but instead are in the midst of quiz time, testing time.

We stayed there cuddling for maybe ten minutes more, and she never did say "William" or "Freddy".  I made myself stay quiet.  Finally, I said "William and Freddy!  That's the names of your brothers!"  But still, she had the tense look.

Why do I do that?  I KNOW she knows her brothers' names.  I KNOW she listens to me.  Why do I have to get it proven to me, at the cost of her happiness?

And of course this relates to the problems with ABA type programs.  They are all dependent on the child having to prove over and over and over and over that they do know what they know.  In a way, they seem especially designed to torment kids like Janey.  I don't think all kids with autism are like Janey is, in her strong negative reactions to being quizzed, tested on what she's already shown to know, but I think a lot of them are.  Once Janey knows something, she knows it.  She's shown over and over that she doesn't forget anything.  But she's not always going to perform on demand.

I'd like to say I'll never make the mistake I made last night again.  I'd like to think I've learned, and I'll stop pushing her to re-prove she is listening.  But I will probably do it again.  I'm a slow learner, and I don't always remember what I've learned, unlike my sweet girl.

Vision Statement

When talking to a friend today about IEPs, we hit on the topic of vision statements.  I had noticed that IEP meetings often start with us being asked what our vision is for Janey's future.  I had thought that was just kind of a warming up question, but in reading a bit, I realized it's required in some states, and used in most.  Here's a link to an article about it.

That got me thinking.  I don't think I've ever planned an answer to that question, which is probably because I don't spend a lot of time thinking about visions for the future.  Maybe that's just me.  Someone once asked me what I had wanted to be when I grew up, and I thought about it and realized I never really had an ambition.  I figured life would happen as it's going to happen, and it has.  That's not all good, of course, but I don't think it's all bad, either.

But what IS my vision for Janey in the future?  I made myself think about it today.  It's tough, because my mind likes to think up scary scenarios.  It goes to places that certainly aren't my vision, unless it's some unbid vision from some dark places.  And maybe that's my problem, the word vision.  A vision is something that seems to be to be given to you.  You don't read poems or old literature about PLANNING a vision.  You GET a vision. 

But if I try to plan a vision, a quote keeps getting in my way, one that I remember hearing for the first time and thinking "Well, that's the most insightful thing I've ever heard"  It's been attributed to various people, but I'll pick John Lennon, and it goes "Life is what happens to you while you're busy making other plans"  There are so many variables, so many surprises, so many detours, that life really is what actually happens, as we plan for a different life, one we never actually live.

Okay---all that said.  But still, I want to try to have a vision. 

Here it is, the honest one, what I really do want for Janey.  I want her to live with Tony and me, until we are gone, until we die or are too sick to care for her.  I want those years with us to be happy years.  I want her to have as much agency as she can over her own life.  I want her to make choices as to how she wants to spend her time, and I want to honor those choices as much as possible.  I want her life to be as free from pain as it can be.  I want her to always be with those who truly love her.  I want her life to continue the best parts of now.  I want her to have car rides with Tony, to snuggle with me and sing Christmas songs together, to watch her favorite movies and dance with excitement, to ask in her sweet voice for bacon or coffee or soup or tomatoes and get them.  When we are no longer able to care for her, I want her to live with one or both of her brothers.

I don't feel like that's what I'm supposed to say.  I think I'm supposed to want more independence for her.  I think there's supposed to be some kind of sheltered work in there.  I think I'm not supposed to rely on her brothers to take up her care.  I think I should include skills like using money, or riding buses, or doing dishes.

Fear hits me here.  Right now, with Janey going to school, I feel able to trust her time away from us is safe and meaningful.  And maybe that could continue, with a group home or a day program or something else for autistic adults.

But something haunts me.  It's a remark by the adolescent specialist we've been seeing, to try to figure out a few physical differences in Janey's development.  At the end of a good appointment, she said "Well, we do want to start Janey soon on something to prevent pregnancy"  And although I should have heard enough to not have been knocked flat by that statement, I was, indeed, knocked flat.  Even though many years ago, Janey's psychiatrist put it more bluntly, telling us "She WILL be abused"  What kind of world do we live in, that because Janey is non-verbal and sweet and beautiful, she WILL be abused?  NO.  NOT ON MY WATCH.

But of course, that isn't my only fear.  Tonight, as I wrote this, Janey was using her iPad.  Or trying to.  YouTube wasn't loading.  Her talking, after some good stretches, is at a low point right now.  And she is tired---her early to bed genes are strong.  So she said nothing.  I was distracted by writing when I thought she was watching videos, while instead, she was endlessly touching a link that didn't work.  A small thing, but somehow it brought up thoughts of her not being understood, of wanting the small things she wants and not knowing how to communicate them, of her either crying in despair or even worse, just silently trying and trying and never getting what she is trying to get.

I have more thought about this, but this is dark enough already.  I'll try to salvage some good from this thought exercise.  The purpose of asking for a vision is, of course, to prepare for that vision, to know what needs to be done to make it come true.  How can we prepare for our true vision---Janey here with us, happy and living a meaningful life?

We can teach her how to access the things she enjoys, like movies and videos and music.  We can work on simple food preparation more, so she can fix herself the meals she loves when she wants them.  We can keep her healthy, free of physical pain as possible, free of mental torment as much as we can.  We can work on coping skills for her for things like waiting, so that half hour she sometimes has to wait for a ride doesn't lead to tears.  We can try, although this is a hard one with our current finances, to prepare for when her brothers care for her, to leave her somehow or other a trust.  We can arrange our house and our lives to give her what she needs and still preserve enough of what Tony and I need so we are all happy, not burnt out.  See---this vision planning works a little!

I have a bigger vision, if I really work at it.  It involves not just Janey, but the whole world of Janeys.  It's a vision of a world that includes people like her, that keeps them safe while giving them full lives.  It's what we've been lucky enough to find in schools for Janey, extended life-long.  I don't see that world happening any time soon, but I can plan for that vision, too.  I can keep talking about Janey's life and her needs and wants and talents.  I can vote for politicians, regardless of the ugly partisan world today, that understand special needs.  I can push in the small ways I am able for a future that better matches the hopeful plans we make when we love our children like Janey.