The Cycling Life

 Janey turned 18 last month.  I would have pictured myself writing a post about that, talking about her becoming an adult, reflecting on her childhood.  I found myself unable to do that.

It hit me today what made it so hard for me to write about the milestone in Janey's life.  It's the lack of forward motion in her life, and ours.  Janey changes, all the time, but the changes are cycles, for the most part.  There are many Janey modes---very happy Janey, talkative Janey, sleepy Janey, crying Janey, quiet content Janey, no-sleep Janey, manic Janey---and there have been, right along, since the regression and start of her autism, when she turned three.  Days today, with the exception of her being older and bigger, could be days when she was 3, or 7, or 12, or 15.

I'm sure some who know Janey will say, and probably rightfully so to some extent, that that isn't true, that she's made progress. And who is to say what progress is?  But at a very basic level, she hasn't.  I think we've learned about her more, we understand her more, we know so very well what makes her tick, how to best respond to her varying states, how to keep her happy more of the time than not.  But progress?  I'm really not sure there has been much of that.

Does it matter?  In some ways, no.  We aren't holding Janey up to some standard that just doesn't work for her.  We aren't working toward a goal that will never happen.  She won't hold a meaningful job, she won't live on her own, she won't get married or have children, she won't drive a car or read books or go to college.  Much of progress is working toward goals.  The kids she started school with are going to college now, preparing for careers, maybe meeting their future spouses.  The progress they have made over the years has led them to this point.  I don't think it was ever in the cards that progress Janey made would do the same---so does progress matter?

The last few days have been in the mode of one of Janey's toughest personas.  She is not sleeping, she is crying half the time, she is pacing and volatile and demanding.  But we know it won't last.  She will pass into another mode---maybe the sleeping all the time mode, or the cheerful but quiet mode, or the rare very talkative and happy mode.  That's the flip side of cycling rather than progress.  Progress, if you think of it as permanent change, could mean that tough behaviors will never go away, and we have learned that with Janey, if you wait it out, they do, at least for a while.

I think why it's hard for me to admit to myself, why a 18th birthday sum-up was something I couldn't write, is because in some ways, we as autism parents are sold a false bill of goods.  I don't think anyone is doing this on purpose.  It's more how we are as a society, and so maybe it's automatically the standard we apply to kids with autism.  We believe that with the right education, the right attitude, the right therapies, the right parenting, the right foods, the right medical care, the right everything, our kids will progress.  We tell that to new parents with autism. And for some kids, it happens, and they attach a causation.  They assume the progress is because they did the right things.  But I'm here to say---that might not be the case.  You can do everything right, and your child might still not be toilet trained at age 18.  They might not read.  They might not talk any more than they did as a toddler.  They might not be able to do basic tasks of adulthood like walk to a store by themselves and buy something.  On the other hand, you might do nothing that is supposedly the right thing to do.  You might be the most hands off autism parent in the world, and your child might undergo a total "cure".  I honestly, truthfully have come to believe that's the nature of the autism beast.  There's a natural history of each person with autism, one we have very little control over.

So---what's the deal here?  Today, because of lack of sleep and days of trying to keep Janey from crying, I feel pretty down.  But overall, I don't think the message is totally a negative one.  I think it's one of acceptance, acceptance that goes beyond the lip service sometimes given acceptance.  Janey is amazing.  She's one of the coolest people in the world, one of the most interesting people, one of the most fun people.  She makes me proud every day.  And that isn't because of progress.  It's because of who she is and always has been.  That doesn't mean life with her is easy, or that we don't need a lot, lot more help that we usually can get.  It means we value her for being her, not for meeting goals or checking off milestone boxes.  

Happy birthday, Janey.  Welcome to adulthood.  It might not look like most people's adulthood, but it's just as valid, and valuable, and we celebrate the memory of your childhood and look forward to knowing you as an adult.

Why does success have to mean progress?

 Facebook lately gives me some memories to browse every day.  I've been on the site for 12 years now, and it's fun to look back at what was on my mind four, seven, nine or more years ago to the day.  Yesterday, it dealt up something cute Janey said 12 years ago, when she was 5..."Don't put your fingers in ice cream!  That's NOT funny!" which I reported I didn't know the origin of.  I had a chuckle, but then started to think about how such random and funny utterances come up now and then from Janey, and that I'd still be surprised and happy to hear her say something like that today, all these years later.  She hasn't progressed in her speech.  She ebbs and flows, but her talking doesn't get better or worse much as the years go by.

For a minute, thinking about her lack of speech progress depressed me.  She's had so many years of school, of speech therapy, of ABA, of just hearing us talk to her.  Why hasn't her talking gotten better?  Why hasn't she made any progress?

And then I started to think---why is the only measure of success with kids like Janey that they progress?  Why are IEP goals always about reaching the next level?  Why do people (us included) hang on cool things she says to see if they are heralding a new era of talking?  Why does the fact that Janey stays steady with most skills not make us happy? 

Progress, it strikes me, is how we separate groups of kids with autism.  All kids diagnosed as being on the spectrum start out behind in some area.   But the ones we call "high functioning" or "mild" are the ones that learn new skills, that come close to climbing up to the norm, that get with the program quite literally.  Those like Janey, who mostly have a steady state, are by the very fact that they are the opposite of these successes considered failures.  Not that anyone would say that, not that it's what we think as parents, but if you look at measurable progress and there is none---what else would it be called?

What if that wasn't how we measured kids like Janey?  What if her occasional bursts of speech, her momentary shows of understanding we didn't know she had, were just seen as part of her autism?  What if we didn't hang onto the idea that she should be progressing?  What would we use instead to measure success?  What would be our goal?

Happiness.  Pleasure in daily routines.  Connections to others.  Just being herself, and having herself accepted as a meaningful member of society.  That's another way to measure success.

If I use that as my yardstick, I think Janey is a success.  She is happy much more of the time than she is sad.  She enjoys her daily routine---the bus ride, school, coming home to a meal made by Tony, watching her familiar movies, taking a car ride, jumping up and down, running in the driveway.  She has connections to many people---more than I do, probably.  She is loved at school and home, she has fans out in the community---she's a bit of a celebrity at the grocery store.  She is herself, always.  As for being accepted---well, we accept her, her school accepts her, our neighbors accept her.  Wider society---that's still a work in progress, the kind of progress I'm talking about here, and one that isn't her job but the job of said wider society.

I'm asked every year at her IEP meeting what my vision is for Janey.  If I were totally honest at these meetings, I'd say just one thing---happiness.  Let her be happy.  Give her reason to be happy.  Put supports in place so she is happy for all of her life.  That's success.

Reflecting on progress at the Whole Foods

At times, progress with Janey can feel glacially slow.  It can stop for long periods, or even go backwards.  However, yesterday morning during a trip to Whole Foods, I realized that Janey has made a lot of progress in the past years, and even just over this summer.

It started with the car ride, and the music in the car.  Earlier this summer, we were going crazy with Janey's constant need to have us switch songs.  We would hear about 10 seconds of a song, and she'd say "Music, please!  Music!" which meant she wanted us to go to the next song.  We decided to gradually stand our ground on a few songs here and there, just calmly saying "I really like this one!  I'm going to listen to it!"  Then after that song was done, we'd switch as much as she wanted to for a while more.  It was surprising how quickly she got used to listening to songs that weren't her total choice, and actually liking some of them.  On this ride, I played a song list of songs from the early 80s, my high school era, and Janey seems to like that era too.  She rocked out a lot and I was very happy!

Janey at the Whole Foods

At the Whole Foods, I realized as we went in that I really don't hold Janey's hand in stores any more.  She's never been much of an eloping threat.  She doesn't run away from us much.  I still always hold her hands on the sidewalk or in parking lots, as she isn't as aware of car danger as I wish she was, but in stores, she does extremely well just walking on her own.  It makes it easier for me, and more fun for her, I think.

I told Janey before we went in that she could pick out some salami.  That's her biggest treat, the extremely expensive salami rack at the Whole Paycheck.  She picked out some very thinly sliced kind that I think if you stuffed it all in, you could eat in one bite, at a cost much closer to ten dollars than five, but a promise is a promise.  And I realized she totally understands now that you have to pay and get out of the store before you eat.  We used to wait until the very end of the trip to get her treat, and then if Tony and I were both shopping, we'd buy hers separately and go right out for her to eat it, but she happily this time dropped it in the cart and didn't mention it while we shopped.

As we walked the aisles, Janey started singing "Oh Susanna"  I love to hear her sing, and she wasn't at all loud, just tuneful.  And we got looks, but not really stares.  Or maybe I'm made progress too, and I don't see things as stares.  We got a lot of smiles, and I felt proud of Janey.  I'm almost always proud of Janey inside, but this was a different kind of proud, a feeling like "Sure, she's different, but she's also so cool, so pretty, so interesting, just a neat kid"  I was on a bit of a high, just thinking how wonderful it was to be walking the store with so few worries about Janey.

We checked out, Janey still being patient, went out to the car, and I asked her if she wanted the salami in the car.  She said no, so I put it with the rest in the trunk.  On the way home, she asked for salami about three times, but each time, when I reminded her we'd have it at home and that it was in the trunk, she accepted the answer calmly.  We got home, and she ate her salami in about two seconds flat.

Janey's reserved look, like at the Five Guys

Today, Freddy and I took Janey to Five Guys for lunch.  Janey looked nervous as we got there, and said as we got out "Whole Foods?"  I said today we were going to a different place, and she didn't fight it.  She said "no" at first as we were at the door, but we coaxed her in, saying "You can have peanuts and french fries!"  She wasn't exactly thrilled to be there, no big smiles or anything, but she sat and eat and behaved.  Thinking about that, it's almost a bigger deal than the Whole Foods, that she would do that well at something she didn't prefer.  She did a whooping kind of scream a few times at the end, not her angry scream but more like a "I just feel like making noise" scream, and we reminded her to be quieter, and she listened and did.  I again noticed looks, but didn't feel they were stares.

It's been a long summer.  And a hugely hot and humid summer, a lot of the time.  But for the first summer in a while without summer school, seeing Janey the last few days, I do think there's been progress, behavioral progress especially.  It's a wonderful feeling, seeing that.

School starts two weeks from today.  I'm still keeping close tabs on that special day.  But I don't feel desperate or close to breaking, as I've felt some summers.  My Janey is growing up, and our journey together, to mutual understanding and compromise and acceptance, is marching on along with the years.

Autism Ten Years In

Janey, age 13---Ten Years In

Last month, the tenth anniversary of Janey's diagnosis with autism passed unnoticed.  I realized it a few days ago, and I had a thought.  What if, on that December day in 2007, I'd been able to have a glimpse forward to now?  What would I have thought?

I will be honest and say I might have been quite discouraged in some ways.  Janey talks now probably less than she did at the time she was diagnosed, and far less than she did when she was two, before her big regression.  Her academic growth has been very, very slow.  She doesn't read, or write, or add or subtract or reliably do things like identify shapes or colors.  She is not fully toilet trained.  She still needs a huge amount of help with self-care.  In short, if you look at measures like standard IQ testing or academic achievement or potential to live an independent life, she is not one of autism's success stories.  That would be a hard thing to have known in advance.

However, in some ways, I think I would have been quite encouraged.  My glimpse forward might have landed on any of quite a number of happy times just this past weekend.  Maybe I'd have seen us all watching Weird Al videos, together on the couch, laughing our heads off.  Maybe it would have been the big Thai take-out feast we had as a pre-back to college treat with Freddy, Janey joining in with huge smiles and her usually adventurous appetite.  Or I might have just seen one of the many times Janey's engaging manner and enthusiasm for life improved our days.

While talking to my friend Michelle about these thoughts, we touched on what I think many out there have realized.  There are different kinds of autism.  I truly don't think it would have made a huge difference what we did in terms of Janey's speech and academic development.  I see other kids that are in the same program as her, kids who started at a baseline like hers or in some cases, far lower, and who now read with ease and speak in a way very close to typical.  However, Janey has something that I don't think all kids starting where she does develop.  It's hard to put my finger on.  It's not really social skills, or ability to engage with others, but it's a personality that in some ways is very unlike the stereotypical vision people have of autism.  In that way, she has progressed.  I would hope if I were able to glimpse forward, I'd have seen that---the spark, the joy, the humor.

When Janey was first diagnosed, fear and hope battled in my mind.  I had hope that she would regain all her speech, that she would somehow progress to the point she left autism behind.  I had fear that life for her would be a joyless life, that she would never be happy---and because it's very true that a mother is only as happy as her saddest child, I would never be happy either.  Now, ten years later, it is fair to say I have far less hope about Janey's potential for typical progress.  However, the fear is also much less.  The Janey that exists today is not defined by what she can't do.  Of course I fear for her future, often, but I also delight in her joys.  In many ways, I have changed more in the ten years than Janey has.  Even if I had been able to look forward, I would not have looked at Janey with the same eyes I do now---eyes that see her for who she is, a valuable, special, frustratingly but steadfastly complex and unique. 

Here's to the next ten years.

Baby Bubbles

It's hard to explain exactly, but lately we are seeing something in Janey that is new and wonderful.  She is talking a little more, but it's not just that---it's a change in how she seems, in how she connects.  It's not there all the time, and it can be hard to describe, but when we see it, Tony and I look at each other in amazement.

I'll try to describe the latest incident.  Janey came home from school the other day very upset.  It seemed she was in pain---she was grabbing her belly and twisting around a bit.  It looked to us like gas pain, or pain from constipation.  We eventually gave her some Tums, hoping to help her feel better, and after a while, she did seem to feel much better.

As we were lying down with her at bedtime, we were talking about the Tums.  I said to Tony "I think they work by taking big bubbles in the stomach and breaking them down into little bubbles, so they can get out"  I wasn't talking to Janey, or doing what we sometimes do, talking to Tony in terms we thought Janey would understand, so she could listen indirectly.  Doing that often seems easier for her than talking to her straight on---it's like there is less pressure, so she hears without feeling pressured to respond.  But that's not what I was doing right then.

Right after I said what I said about the bubbles, Janey pointed to her belly and said "Baby bubbles?"  She said it exactly like most people would reply, in a questioning voice, like she was looking for confirmation she understood correctly.  Tony and I looked at each other in amazement.

This might not sound like a big deal to someone who doesn't know Janey, but it was something in several ways we have hardly ever seen.  First, she responded with appropriate timing---no delay.  Secondly, her tone was right on---not echoed sounding or sing-song or anything else, but just questioning.  Thirdly, she used a word we hadn't used, "baby" instead of "little"---so she wasn't quoting or repeating, she was using a synonym to clarify.

It's this little kind of thing we are seeing more and more of.  Janey seems to be, for the lack of a better word, tracking our speech more.  She seems to be following what we say and processing it in real time.

Another story---kind of a funny one.  Janey's uncle Joe often asks her "What's my name?"  It's something he did with all three kids when they were little, as a way of making conversation.  With Janey, he's been asking her that for years.  She replies or not, depending on her mood.  However, the other night, Tony was out with Joe and Janey in the car and I got a call.  Tony said "Are you sitting down?  You won't believe this"  What had happened was that Joe asked Janey, for maybe the ten-thousandth time in her life, "What's my name?" and Janey replied "You forgot your name?"

That answer---wow.  We joked that she must have been sitting on that reply for years, waiting for the right time.  It's an amazing reply to us---it shows she understand the meaning of the word "forgot", that she gets that someone would ask a question to get information, and most of all, it breaks away from a script that has been years and years in the making.

For a long time, Janey's speech didn't progress.  Our theories of why it suddenly is---Janey's having a good year of school and a good year of health.  Things have been steady and fairly upbeat.  She has a great team at school---a terrific teacher, an ABA worker we get super reports about, and a speech therapist we met her at IEP meeting that seems to get Janey in a way that we haven't seen in a speech therapist for a long time.  Those elements together, along with Janey herself maturing and learning, seem to have prompted progress where we hadn't seen it for years.

I hope very much this speech and understanding trend continues.  I am not being pessimistic but rather realistic in saying it very well might level off or regress after time---we've seen that pattern often.  However, knowing that she CAN talk and understand in the way she's been showing---it's wonderful.  It will keep us working.

In the larger picture, I want to get this out there partly to give hope to others.  There is so much emphasis on early intervention, on "crucial stages".  There is always a feeling that the necessary therapy has to happen RIGHT NOW, or never.  Janey is the proof I need to say that isn't necessarily the case.  She's making progress now, at age 12, at a rate we haven't seen since she regressed at 3.  It might not be the kind of progress that you read about, the "miracle cures", the breakthroughs, but it's progress non-the-less, and we couldn't be prouder of her.

The Imaginary Conversation

Lately, I've been imagining a conversation a lot.  It's a conversation with someone who has just had a child diagnosed with autism.  In my mind, the child is a girl, like Janey, and is about Janey's age when she was diagnosed, just over three.  It's not too hard to figure out I'm probably really imagining a conversation I would have liked to have had with someone myself, but either way, I've been giving it a lot of thought.

In my imagined scenario, I've invited the mother (it could be a father, too, but it's a mother in my head) to my house, along with their newly diagnosed daughter.  I'm including her because I want to have a place they both can go that is judgement-free, where there has to be no worries about behavior, and because I know it can be hard to get out of the house alone, and I want this mother to be able to come over.  I make us both some coffee, and we sit down, keeping an eye on the little one, putting on a video if she likes that.  Then I start telling her the four big things I want her to know.

The first is that there is nobody, nobody at all, who knows how this will all work out, who knows what her daughter will achieve or not achieve.  I'll tell her that I know she is feeling scared and also feeling hurried, like she needs to get started THIS MINUTE with some kind of therapy, and that there is no shortage of people giving her their particular ideas what will help.  But I want her to know that I feel most kids are going to be what they are going to be.  It's not that love and caring and attention and help are not important---they are, and they let the child reach the full potential of what they are meant to be.  But nobody knows what that potential is.  As a friend said on my Facebook group page recently, there are kids who start out not talking who wind up in graduate school, and there are kids who are very mildly affected who never progress at all, or even regress.  And in both these groups, there are parents who care and love and are dedicated to their child, but in both groups, there are parents who tried everything and parents who took a more measured approach.  There is no one right way, and there is no route to any one outcome.

With that in mind, I'll say something else I feel is very, very important.  I'll tell the mother to enjoy her daughter.  I'll tell her to delight in her, to have fun with her, to get a kick out of her.  Sometimes, because we are taught to see the autism as something to be fixed, cured, changed, we feel like if we delight in a behavior that might be part of the autism, we are somehow not with the program, we are not being single-minded in our quest to fix this all.  And that is just wrong.  We need to be able to feel joy in what our child is right now.  Laugh along with them as they echolalia their way through a video, enjoy their latest obsession along with them, play with them at the level they are at.  Janey is twelve, and she still loves baby games sometimes---peekaboo, patty cake, "where are you?" when clothes cover her eyes.  And I love playing them with her.  There's nothing wrong with that.  There is nothing wrong and everything right with feeling proud of your child, feeling joy in who she is.

Then I'll talk about the harder parts of it all.  Not to jinx them or scare them, but I'll tell the mother that there will be some very, very tough times.  There will be nights so long it's impossible to think there will be a morning associated with them.  There will be calls from school that shock and chill you.  There will be moments of despair, of feeling that if we can get through the next ten minutes, it will be a miracle.  There will be anger at those who don't get it.  There will be resentment of friends with kids for whom everything seems to come easily and they don't even seem to appreciate it.  There will be tiredness, tiredness so extreme there should be a separate word for it.  There will be frustration, and horrible cleaning jobs, and days that feature absolutely nothing but one strategy to get by after another, until finally the day ends.    I will tell them that during all these times, they will feel extremely alone.  They will think that no-one else in the world has lived this life.  They will look sometimes to the internet for help, and find only cheery, bright stories of progress.  They will look for advice and find that of "experts" who have never been awake all night with a screaming child who can't tell you what is wrong.  And I will tell that mother she is NOT alone.  I will tell her many, many of us have lived this life.  We might not talk about it or write about it much, for many different reasons, but we are there.  I will tell the mother when she feels completely alone, imagine a circle of mothers like herself, the middle of the night autism mothers, all raising a cup of coffee to her.

The last thing I will tell her is the thing most like a directive, like a command.  I will tell her that if her child is physically sick, she MUST insist on the same medical care any other child would get.  I will tell her about a night Janey had a high fever and was shaking enough so it seemed like a seizure, a night we called an ambulance and took her to the ER, a night that the doctor there didn't want to "upset" her, and so did a brief and useless exam, and never once touched her belly, the belly where an appendix most likely had already burst.  I will tell her how it took three days for that burst appendix to be found, leaving her with complication after complication.  I will tell her we could have lost Janey's life because someone didn't want to "upset" her---or in another way of looking at it, didn't want to bother with a screaming and hard to deal with autistic child.  I will tell her that she must tell all doctors that if there is anything they would examine on a typical child, they must exam it on Janey, and we will restrain her if necessary.  We would rather have her upset than lose her.

Then, after that intense talk, after in my mind we are both crying, and that has upset her little girl, and I have apologized for that, and we have laughed together at how much coffee we have had, and she is ready to go, I'll hug her and wish her all the best.  I will tell her that her daughter is amazing, because I am sure her daughter will be amazing.  And as they leave, I will cry to myself a little more, thinking of all they are going to discover together.

Thoughts during the calm

Calm Janey

My friend Julie said to me recently that it seemed like life with Janey was evening out as time went by.  That struck me as a very good way to put it.  The last year with Janey has mostly been a year of evening out.  Her lows are higher, her highs lower, and she spends more time in the middle.  There's still tough days, and still amazing days, but most days are..days.  Which is good.  Which is very good, actually, compared to some of the hard times. Whatever it is---her getting older, her now being essentially an only child as her brothers are both away at college, the right combination of medication, a stable school situations, our changes in attitude and strategies---life with Janey is much smoother than it was a few years ago.

That's why it seems strange to me that more than I have in years, I have been thinking about tough questions.  Why is Janey autistic?  Why, unlike so many kids with autism, has she made so little progress with speech and academics?  Why is it so hard to get help with her?  I guess when we are not in crisis mode, but also not being blinded by exciting new things Janey is doing, there is time to sit back and think, and sometimes the thinking is hard.

I never used to dwell much on why Janey is autistic. A lot of that is because there is no shortage of potential reasons.  Pretty much every time a new idea comes out as to what causes autism, it is something that applies to Janey.  I had a terrible pregnancy with her, with a severe allergic drug reaction at 12 weeks.  Tony was, at age 42 at the time of her conception, an older father.  Genetics can't be ruled out, and auto-immune disease run rampart through both sides of the family.  We live near a busy street, and pollution certainly could be a factor.  I could go on and on.  But still, I wonder. Was there something I could have done differently?

As for why Janey has progressed so little, that's harder to say.  And more heartbreaking.  So, so many little kids that start out at the same place as Janey make so much progress.  They have the same resources and teaching Janey did, and now they can talk easily, can read, can write, can function at a hugely higher level than her.  I love Janey just the way she is, but for her, I wish she had made the leaps some kids do.  The evening out applies to her progress, too.  She talks less than she has at times, her toilet training has regressed to less than it was, she is in some ways more affected by autism than she was at 6 or 7.  I don't know why.  The same question comes up here---was there something I could have done differently?

And why, WHY, is it so hard to get help with Janey?   Why does it seem that those charged with helping children with special needs don't understand children like Janey, children whose needs are fairly extreme, and because of that, children in families that need help so badly?  As an example, over and over this holiday season I've heard about ToysRUs and Target and so on having special "quiet" shopping hours for kids with autism.  And although it probably sounds petty and mean, I think "Bah Humbug"  That is an example of the kind of help that is no help at all to someone like Janey.  She would not be quiet for a quiet shopping time.  She doesn't understand shopping for toys.  She has no desire for toys.  And most of all, taking her shopping is NOT a source of help for us.  It's more stress, not more help. What would be a million times more helpful is if the stores somehow arranged for someone to actually watch kids like Janey so Tony and I could shop.

I know there's money out there to help kids with autism.  I've talked with people working for various agencies.  But the money seems to go into a couple fairly useless areas. It goes into "awareness", or it goes into "family events".  Well, if you have a kid like Janey, you are pretty darn aware of autism.  And if you have a kid like Janey, just getting out of the house with her is tough enough.  It is really not any help to have some kind of event to go to with her unless it is catered to kids LIKE her, kids with high need autism.  And even if it is, that's not respite.  That's not a break.  It might be fun, like going to the Lego playland or the Autism Eats Out events, but it's not really help.  Quite simply, help is RESPITE.  Help is someone else taking care for Janey for a while.  It's that simple.  It's that simple to state, but it's very, very hard to find.

Having the time and energy to think about the larger autism issues is a luxury. I am very grateful things are calmer than they were with Janey, and I knock on wood to hope they stay calm.  Progress or no, respite or not, reasons  known or not, she is a remarkable, wonderful girl---my sweet precious Janey.  I am lucky to be her mother.

Another New Year's Eve, and a look back

I decided to look at my last post of each year since I started this blog, when Janey was 3.  It was an interesting exercise.  A couple things struck me.  One is that I kept, each year, desperately looking for progress, finding signs of it, listing them and then, the next year, without realizing, listing the same things again.  The progress ebbs and flows, but it doesn't seem to really be a forward line.  Another thing is that the end of the year has been a quite tough time a few of the years.

2008 Last Post of the Year Link

In 2007, I'd just started the blog, and didn't really write any year end post.  At that point, this blog was more of a diary. 2008 was a lot the same.  Strangely, what I wrote for the last post there sounds like it could have been written about the past few months---hitting the TV, biting, scratching.  Janey was only 4 then, and so the behavior was easier to handle, but it's a little startling to see it started then, with quite a few years in between that she has less acting out.

2009 Last Post of the Year Link

Janey's love of Christmas music hit that year, and it's fun to read about that.  I was starting to realize how severe Janey's intellectual disability was, and how her talking was very limited.

2010 Last Post of the Year Link

Janey was 6 that year.  It was a tough year, the year she had such a terrible time around June, and we started her on medication.  I reflected about the lack, once again, of a miracle breakthrough, and was starting to see it wasn't ever coming.

2011 Last Post of the Year Link

I was a little more upbeat that year, the year Janey was 7.  I remember that as one of the better years.  I went back to the theme of how limited the progress was, but I also wrote about cute things she was doing.  We were learning to enjoy our little girl as she was, not for what we were hoping she would become.

2012 Last Post of the Year Link

Another fairly good year, when Janey was 8.  I reflected on realizing that I was the one who knew her best, and I was encouraged by her increased understanding of our talking, and her communication, although talking wasn't how most of it was done.  I mentioned toilet training, surely thinking we were finally on our way (we aren't, and I now think we never will be)

2013 Last Post of the Year Link

A very downbeat post.  The end of last year was awful---the whole year was the start of the new reality, that Janey was getting older and things were getting tougher.  She was becoming increasingly unhappy, and I was feeling increasingly pessimistic.

And that brings us to now, 2014.  It's been quite a year, as most of you know.  The two big events were Janey changing schools and her hospitalization.  She switched this year from the inclusion classroom and school she'd been in since 3 to an autism only classroom in an autism wing of another school.  Much of that went fairly well, and in fact the time from about May-October was overall good, with Janey having a pretty nice summer and even going to the amazing Camp Fatima overnight.  However, we will most remember November this year, when Janey's self-injurious and lashing out behaviors increased to the point that she spent 24 days in two hospitals.

Where are we right now?  Right now, today, Janey is in a fairly good mood.  We are thinking her new medications might be doing something, although we've had kind of an off and on pattern of good days and not as good days.  Janey is Janey.  I think less, these days, of progress, and more of just learning how to best be a mother to the Janey I have.  She is an amazing person in so many ways.  We continue to enjoy her love of music.  Just today, we listened as she heard three new songs (we've been listening to a classic rock countdown) and sang them back, all perfectly, within minutes  She and Tony have a special morning routine any day he's not working---bacon and pan-fried vegetables all morning.  She uses the computer with ease to watch videos she likes.  She is getting tall and remaining beautiful.  Yet we are on alert all the time.  We knew at any minute, she might rage and bite us or scratch us.  We know that good days are to be treasured because there will be bad days, and they might be very bad days.  We love our Janey.  We despair over her, often, but we delight in her often too.

Here's a year end picture of my girl, and my year end wish to all of you.  Might you all have a 2015 where the happy moments outnumber the sad, and may you all have moments of true, pure joy in your special children, the moments that keep us all going.  My love to all of you.

A Time Anomaly

Lately, Freddy has gotten very into Star Trek, and we have been watching a lot of episodes of the various shows.  That made it particularly striking when one of my favorite blogs, On the Train With Sophie, mentioned a Star Trek Voyager episode in a blog entry---an entry that made me think and think.  Read it here, if you wish!  The entry is about how in many ways, Sophie stands still in time, while her siblings seem to be in a different time flow--moving on and growing up fast.

In many ways, Janey stands still in time too.  I thought of that this morning.  We can never count on a full night's sleep, and are happy when we get it.  She wakes up wet, and needs a change.  She runs around the house as if she is excited she can finally run.  She comes to us and asks, in a phrase that could easily be that of a two year old "Strawberry milk?"  We tell her "I love you!" and she echoes it back "I love you!" and we are thrilled.  Nothing she does would be unusual in a toddler.  Only her 9 year old body shows that she is no longer two.

We think in this society in terms of progress, moving forward, striving always for the next level.  At school, success is measured in progress, in a line moving up a graph.  When we talk about our kids to others, it's almost always progress we discuss---they are walking!  They started kindergarten!  They are in high school!  They have gotten into college!  It's how we see a life going---it's how we feel we are on the right track.  So how do we deal with a child that doesn't progress in the typical way?

Of course, as I wrote in my last entry, there is progress with Janey.  But in a way, it's lateral progress.  She is refining being at the stage she is in.  She is coming to feel at ease with the level she is at.  And if we let ourselves change our thinking, what is wrong with that?  What is wrong with being developmentally a toddler, and getting better and better and better at it?  She knows how to be at the stage she's in.  She knows how to delight us, as toddlers do, with her sweet talk.  She knows what videos she likes, what textures feel good to touch, what foods she likes and what she doesn't.  She knows what books she likes having read to her.  She knows how to ask us for the basics in her life.

What if we put aside our traditional views of time and development?  What if we accepted that Janey might not move forward?  Please note I am NOT saying that I am going to do this.  I am just entertaining the thought.  In reality, I am still in our current time flow.  I want Janey to progress, because, quite frankly, time also is moving along for Tony and me.  We are getting older.  We will some day come to an elderly stage, and some day, we will be gone.  That is why, I think at heart, parents want their children to progress.  We want to know that when we are no longer around to care for them, they will be able to care for themselves.  Beyond that, I know Janey would be happier in a lot of ways if she was able to progress.  I think she'd love to be able to read.  I think she'd enjoy being able to have a real conversation.  I think she would relish the ability to do more for herself.  But what if we accepted that none of that might happen?  What if we concentrated on enhancing the stage she is in right now?  What if Janey is in a time anomaly?  It happens in the Star Trek world all the time.  They run up against all kinds of time oddities.  I am not literally saying I think that is the case here, but like Star Trek showed us a optimistic view of the future, maybe we can learn from it to accept that time isn't the same for all of us.

One morning with Janey (and thoughts about progress)

Janey woke this morning at six, which is a pretty typical time for her.  She's been sleeping better lately, or I should say she's in a good sleeping phase, as that goes back and forth.  She woke up cheerful and singing, which is the case about half the days, and is more the case if she wakes up after having crawled into bed with Tony and me during the night, and one of us is still in bed.  I think she has a fear of being alone.  She got up and right away started her morning list of wants "Strawberry milk, please!  Toast and butter, please!  I want bacon!  I want oatmeal!"  Breakfast is her big meal, and she ate most all of those!

After eating, Janey wanted some videos, and I put them on, and changed them at her will.  She is less into Netflix lately, probably because we were having some kind of problem with the remote for a while, and it wasn't responding to her button pushes, which made her very upset.  So now she is relaying on good old fashioned VHSs, which don't fail her much!  After a bit of watching, she fell back asleep, which is another new pattern for her.  It makes it a little tricky getting her ready for school.  I put it off until the last possible moment, but she is still very annoyed when I wake her to get dressed.

Dressing goes fairly well, and hair brushing relatively well.  Janey doesn't care for her hair being brushed at all, but she now tolerates.  I say most days "I'm going to be extra gentle today" and if I skip it, she's say "EXTRA GENTLE!" and remind me.  I got her teeth brushed and her coat on and we got out the door.  However, Janey suddenly ran back in and got a book she'd been into lately---a Wo Wo Wubsey book called "A Tale of Tails"  I asked her if she wanted to take it in the car, and she excitedly jumped, happy I'd figured her out.

The ride to school was great, as it's Christmas music season!  We listened to a Boston Pops singalong of modern Christmas songs, which ended with a big doing of "Jingle Bells"  Janey was clapping and smiling and laughing, and I loved seeing it.  She was so thrilled just to hear the songs she knows, and appreciative of the arrangement.  I love seeing her enjoy music!

When we got to school, Janey insisted on bringing the book in with us.  That made me very happy.  It's recent she's falling in love with certain books, and I couldn't be more thrilled.  I have used the methods I used with the boys over the years to try to get her to become book obsessed---having many, many books around the house, always dropping everything if she wants to be read to, leaving books she might like where she'll find them on her own, instead of trying to force her to listen to them, and not treating books like they were made of glass---letting them be as freely used as toys would be (A million thanks to Mary O'Grady Leonhardt, whose book Keeping Kids Reading has inspired me so much so many times---she reads this blog, and it's to me like having one of my idols read it!)  These methods seem to be finally paying off with Janey, and she's developing a huge attachment to some books, and wanting them read over and over.  With the recently discovery she can at least read some, this means even more to me.

Janey walked into the school with a smile, holding her book.  One of the sweet girls from her class saw her and walked down with us to her room, and Janey entered the classroom as happy as could be, book in hand, ready for her day.

On my drive home, for some reason I started thinking about progress.  On the outside, it might seem like Janey hasn't made a lot of progress over the years.  If you went strictly by test results, by speech, by graphing charts, it would look like she hasn't.  She still doesn't talk much.  She still couldn't pass a test requiring basic preschool skills like knowing shapes and colors and letters.  She isn't fully toilet trained.  She doesn't dress herself well.  She requires watching every second.  She is still very, very autistic.

However, thinking about the morning, I realized that there is actually a lot of progress that has been made, in less tangible ways.  From sleep getting a little better, to her tolerating things like hair brushing, to her letting me know she wanted the book with us, to her love of music being ever more shared with others, to her happy entry into the school and her smile at her friend, to just being more consistent, more predictable, more present---the days are easier than they used to be.  She is still very tough.  If you compared her to other kids her age---well, that would be depressing.  She is still intellectually disabled.  However, through her own maturing and our own increasing ability to understand her, she is progressing.  She's making significant progress, in ways that can be felt more than quantified.  An ordinary morning, broken down, is a series of little moments of progress.  You go, Janey!

Gold in the Ocean

I've read there's lots of gold in seawater. It's there, but it would be very, very hard to separate it from the water.  Do we look at the sparkling ocean and think "Wow, it's so beautiful because of the valuable gold it contains?"  I don't think most people do.  They love the ocean for other reasons.  Lately, I've been thinking about this a lot as a metaphor for Janey's brain.  I think there are amazing things inside her brain.  I think she has ideas, music, opinions, sassy backtalk, arguments, words of love and all the other parts of a child's personality that they share with us when they talk.  But getting all that out?  Sometimes it's like getting gold out of ocean water.  To carry the metaphor further, I don't want Janey to be valued for what might be in her mind.  I want her to be valued for what she is right now.

But what if we could figure out a good method to get the gold out of the water, effectively and safely?  That would be great.  I'd go for it.  But say I tried and it didn't work.  Would I think devalue the seawater?  Would I think less of its beauty, and value, and usefulness?  I hope not.

I would dearly love Janey to be able to better communicate.  I dream of it.  I long for it.  But over the years, she has made very little progress in this way.   This was brought home to me today as  I prepared for an appointment we had this morning to start the process of Janey being followed by the autism team at a big hospital.  I was looking over reports and IEPs and notes from years back, and I was struck hard by how I think Janey talked more at 4, a year after her big regression, than she does now.  Her talking ebbs and flows, but it can in no way be seen as a graph going up.  She isn't talking more as she gets older.  I don't think if she ever will.  This is despite lots of speech therapy, great teaching, Tony and my and the boys efforts, ABA, an iPad, everything we can think of.  There's a good chance we will never, ever hear the great things I believe are in her mind.  They may stay locked in there forever, at times letting us have a little glimpse of the treasure, but for the most part, inaccessible.

I want the world to value Janey just as she is.  But the biggest battle I have is with myself.  I need to truly accept Janey as she is.  I'd like to think I do that, but sometimes, I go beyond just hope to pushing, to probably letting Janey know that I wish she would talk more.  For example, last night Freddy was quizzing me on things he'd learned in school.  For fun, he quizzed Janey too, asking her to tell him a number.  We didn't expect an answer, but she piped up "Like, four?"  I was thrilled, and praised her highly.  I then started asking her lots more things, I guess trying to strike while the iron was hot---asking her to tell me a letter, to point to her brother, to tell me a shape, to spell her name, to give me the names of the cats----none of which she answered.  And as I watched her face, it turned from happy to confused to blank.  She tuned out.  I am sure I showed that I was thrilled by that glimpse of the gold in the seawater.  Do I act as excited when she claps along to her favorite bluegrass music?  Do I praise her for dancing around, for smiling, for just being herself?  I need to.  I need to show her that she is valuable not just for her potential, for what she might be have locked away and lost the key for, but also for who she is, right now.

Progress Despite It All

Although this summer has been tough in many ways with Janey, I'm realizing it's also been a summer of huge progress.  The two may be connected.  The last week has seen a big decrease in the screaming and crying, and I'm able to relax a little and take stock of what Janey has been doing, and it's quite encouraging!

First, her speech.  She has been talking in ways we haven't heard before, or have heard only on very rare occasions.  A few examples---the other day, Tony took Freddy and Janey to Chipolte on the way home from getting Freddy at work.  After they ate (and Janey was good for eating, progress in itself!), Janey said "Do you want me to clear the table?"  All mouths dropped open!  That's usually what one of us says after a meal there, but who would have ever guessed she'd say it!  Tony gave her some napkins to clear, which made her very happy.  Another time we were all in the car, discussing our favorite foods (not an uncommon topic in our food obsessed family).  All of a sudden, Janey yelled out "Indian chicken!"  She actually joined the conversation and told us her favorite food!  A few nights ago, she craved some Chinese rice (fried rice) and Tony ordered some.  We all walked to the square near us to pick it up, and on the way home, Janey jumped up and down excitedly and said "I'm almost having Chinese rice!"  I know I've NEVER heard her use a word like "almost" correctly before.  We were thrilled.

Janey has also started to seem to differentiate between family members more than ever before.  Usually in the past, it seemed like we were fairly interchangeable to her.  But this summer, we have been assigned roles.  If  Janey wants Netflix or a video, only I am able to put it on.  But if she wants food, that's Daddy's job.  Last night as I opened the fridge, she sneaked out a jar of mayonnaise, and immediately took it over to Daddy to see if he'd give her some, sliding past my attempt to grab it.  She knew he was far more likely to give in on that one than I was.  She has also been calling the boys by name.  The other day, William came into the back yard where she was playing, and she called out loudly "Hi, William!" which made him very happy!

Janey is also showing an interest in drawing and writing, which is totally new.  She has never drawn anything recognizable, but she might come by that naturally, as neither have I, really!  But I got her a sketch pad the other day, which she was eager to use.  Below is the very first thing she wrote in it...

Yes, it's a J!  I was so happy.  You can see an example of my artwork in this next picture, where I asked Janey to put the mouth on a face...  (I drew the face, and Janey drew the mouth)

I was happy she got what I meant, and added the mouth quickly!

Lastly, Janey is showing signs of wanting more independence.  This one is harder for me to accept.  For her whole life, Janey has held my hands when outside anywhere but in our own driveway or back yard.  She has been just too prone to running away or doing impulsive things for me to let go.  However, lately she is constantly dropping my hand and wanting to walk on her own.  I started giving in, slowly at first, but I'm realizing something amazing---she is staying with me!  She's walking on her own at my pace!  It still makes me very nervous, but she is almost 9, and it makes sense she wants to not always be holding my hand.  She loves to do things like walk along a crack in the sidewalk or run her hands along trees or walls, and now she can do that.  This morning, as we walked to summertime school, we got to a place where we have to walk next to buses.  This is where I usually grab Janey's hand, and as I was about to, she took my hand.  It showed me she is aware of safety and her surrounding more than she ever was, and knew we were in an area she needed help with.

So, despite the very tough times here and there that this summer has brought, I hope, and I shouldn't even write it to not jinx it, but I'm knocking on wood---that at some point in the future we may see the summer of 13 as a turning point.  I hope so---I dream so.

Trying something new to combat screaming

This past week, Janey's screaming has become a huge issue.  Every single time she feels the slightest bit angry, sad, annoyed, impatient or any kind of emotion except completely happy, she has been screaming.  And it's a loud, eye-shattering intense scream.  The kind of scream that is literally dangerous when you are driving, the kind of scream that wakes up sleeping people and scares the cats, the kind of scream that can quickly drive you to despair.  Yesterday afternoon and evening was the worst.  She screamed over and over and over.  She kept asking for videos, and then the minute they were on, if they weren't exactly what she had in mind, or if they weren't at the beginning, or if she had just changed her mind, she'd scream.  She would ask for food, and if we weren't magically able to make it appear instantly before her---you guessed it, a loud, loud scream.  She finally got to sleep, only to wake at 2 and stay up for hours, displeased with us and letting it be known by screaming.  She had school this morning, and the minute she got home, she started the routine again.  By around 4, we were ready to flip out.

I'd been thinking for a few days about trying something new.  I have very, very rarely used ignoring as a technique for Janey.  This is because when a child isn't that verbal, it seems wrong to ignore a way they are communicating.  However, lately Janey's talking has improved a good deal.  I KNOW she can at least in a word or two tell us what makes her mad, or she can if she calms down enough to do it.  And by trying to do what she wanted to prevent the screaming, we were reinforcing the screaming.  This is something that even a year ago, I wouldn't have said.  I didn't think then that Janey was capable of making that kind of connection.  But I am realizing Janey is progressing, and she understands more than she used to.  So I talked to Tony and the boys, and we decided to tell Janey that we were no longer going to answer her screaming.  If she screamed, we were just going to ignore it.

This sounds scarily close to what just a bit ago I wrote about not liking, the "use your words" phrase.  But I really feel there is a difference.  I know Janey can't always use her words.  But she can get across what she wants in many other ways.  She can hand us a movie.  She can lead us to food.  She can stomp her feet.  And most of the time, she can say enough so we know what she wants.  And of course, she can scream.  And if the screaming was a once in a while thing, a sign of truly being very upset, I wouldn't mind it.  But it was turning into her first line of communication, probably because it was working.  We were trying very hard to avoid it, so we were likely doing things quickly to make her happy.

We told Janey about our new screaming policy, in words we thought she'd understand, and then we did a series of roleplays, where Tony asked me for something, I said "not right now" and then Tony screamed, and I ignored him.  Then we did it over, with everything the same but his response being "I am VERY ANGRY at you!" after which I answered "I'm glad you told me that!  It's still going to take a minute to get you what you want, but it's great to know how you feel!"  We overacted heavily, and switched roles around.  Janey watched in delight.

It only took a few minutes for the first scream to come along, and we ignored it---that first time, also saying that out loud "We are ignoring screaming today!"  Janey's scream turned to a happy look.  I think she was testing us.  And she then said loudly "I want BACON!" Luckily, we had bacon, and Tony made it for her.  The last few hours have been quite free of screaming.

I have NO illusions this has solved the screaming problem.  I'm sure it will be back.  But it felt very good to decide on a way to handle it, discuss the way and be in agreement.  It made us all feel a little less desperate.  Of course, we will stay near her if she is screaming out of control.  We always stay near her.  And of course there would be exceptions if she got herself into a state where she couldn't talk or communicate otherwise.  But the whole thing is an illustration that Janey IS making progress.  She IS understanding more.  Or at least I hope she is.  We'll see how the weekend goes.

What I wish I'd been told

I read a blog entry that was highlighted on the Huffington Post recently.  Here is it...  LINK  For some reason, maybe because I'm having a not great day, it upset me a lot.  I calmed down and re-read it, and found there was a lot I agreed with there.  Most of the message that the author wished she had been given when her son was diagnosed was something I agreed with, really.  But with one big exception.  Her dream message says " What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life."

 Well, that is what got me.  It got me because it is like so much of what I've read lately.  It seems to disregard a huge part of the autistic population----kids like Janey.  Kids that DON'T have great potential.  Now, that sounds awful to say.  Janey might have great potential.  I might be somehow squelching it with my poor attitude.  But I don't think so.  I delight in Janey often.  I think she's amazing, she's wonderful, she's astonishing.  But to say she has great potential is not fair to a lot of people. It's not fair to all the people who work very, very hard with her and have yet to unlock that potential in any huge way.  It's not fair to me, who would give anything on earth to see Janey progress.  And most of all, and what really bothers me, is it's not fair to Janey.  It's not fair to say that a child with an IQ that no-one will give me an exact number for, but which I can guess is around 40, a child that still operates in many, many ways on a 2 year old level at the age of 8, a child that unless miracles occur, will need intense life-long care, has great potential.  It's not fair to say her life will "with the right supports" be happy and fulfilling.  Maybe it will be.  But what I've seen of what is out there for adults with her level of involvement is not happy or fulfilling.  It just isn't.  I'll do anything to make her life as happy as I can.  But I'm not going to take on the burden of thinking there is something I could do that I'm not doing that is keeping her from having this life of potential and happiness and fulfillment in the future.

So, what would I have like to be told, back when Janey was diagnosed at the age of 3?  Maybe something like this..

Your child is not going to be one of the spontaneous, amazing cures.  In many ways, 5 years from now she'll be functioning about as well as she is right now.  There will be days that can only be described as from hell.  There will be false hopes, there will be sadness, there will be disappointment and there will be discouragement.  However, keeping that in mind, there's going to be a lot good.  There will be times that you see Janey as just about perfect---whole days when there could not be a more delightful child.  You will realize that her intellectual disability matters very little in the grander scheme of things.  You will love the people at her school, the wonderful care and teaching and love she gets.  You will meet other parents, amazing people, people you will love being friends with, people that will help form your own circle of support.  Don't feel like there are things you should be doing that you aren't.  Trust yourself.  Take care of yourself.  Keep an eye on your own health.  Don't let it go in order to concentrate fully on your kids.  Enjoy your other children as well as Janey.  Appreciate your amazing husband.  Live for the good times, and know the bad times are not endless.  Autism is tough.  It's extremely tough, tougher than you can realize right now. But you are tough too, and you will learn to live this new life.  Give your girl a hug, and love her just the way she is.

Everyone's letter would be different.  And that is the important part.  Don't let anyone tell you what your letter should say.  You'll find out.  You'll make your own way.  There's only one part of my letter that applies to everyone---loving your child just the way they are right now.  And I know that the people I have met through this blog do just that.

Calming Down

Just now, Janey did something she's hardly ever been able to do---calmed herself down (with a little help).  She had just been at the grocery store with Tony, and had seen a cake she wanted.  Tony didn't mind getting it, but in the bustle, forgot to.  At home, Janey asked for the cake, and of course there was no cake.  She had been in a wonderful mood all day, but fell apart at the cake news---I guess she really had quite a craving.  She screamed and cried and looked to be in sadness/hysteria mode.  I went over to her, put my hands on her shoulders and asked her to take a deep breath, and said if she could calm down and ask nicely, Tony would go back and get the cake (he believes very heavily on following through on promises to kids, and he had told her at the store she could have it).  Janey took a minute, looked at me, and said in a controlled voice  "Do you want to get a cake?", her usual means of asking for things.  We gave her a big hug, got on her shoes, and they are now off to get the cake.

It made me realize there is progress.  It's slow, it's back and forth, it's inconsistent, but it's progress.  Her getting upset is no longer always the sure sentence to hours of hell it used to be.  It often still is, but not always.  It's a combination---we are figuring her out and she is figuring us and herself out.  And we'll have some cake to celebrate.

Tired of feeling this way

I haven't written in a few days, because I was going with the old saying---"If you don't have anything nice to say, don't say anything at all."  I don't really have anything mean to say, but I don't have anything nice to say either.  I've been depressed for a bit now.  There are days I feel better, and days I feel worse, but overall, I've had my particular brand of depression, which mostly involves having very little energy and sleeping a lot. And yes, I have a doctor's appt. next week and I will talk to her about it, but it's not the kind of depression that I think much can be done about, besides things I've already tried or am already doing.  It's situational depression.  I'm depressed about specific things, and of course high on the list is Janey.

Not Janey as a person.  I'm not depressed she is herself.  I'm depressed, I think, because I feel like I've missed some boat in helping her.  I think I've been reading too much about autism---just following news leads in my Google news section about autism.  I missed the early intervention boat on her.  It doesn't help me feel better about it that she wasn't autistic then, or if she was, it was a pretty subtle thing.  I remember her PT saying how amazing it was how social Janey was, how much she talked.  I know then she eagerly greeted the PT every day.  I don't think about things like that a lot.  Sometimes I like to almost forget those first 3 years, to tell myself that Janey NEVER could talk like that, because lately, despite all the years that have passed, her horrible regression is upsetting me more than it has in a long time.

The only reason I can figure this is the case is that Janey seems to be in a plateau right now, or maybe even another regression.  Her talking is not good lately.  She is saying less and less, and what she does say is getting turned into shorthand a little.  For example, the phrase I hear most often at home is "Snuggle on Mama's bed!"  It's her response to any kind of upsetting thing happening---a scary part in a show, a reprimand of any kind, or just some impulse from inside that bothers her.  But now she's mushing the phrase together, just looking at me and saying "nuggmamaba" or something like that, like that whole phrase is too much work.  It's like every word costs her a lot of money, and she's a saver.  For years and years and years, when I leave her in the morning at school, she gets told to say goodbye to me, and she just about never does it spontaneously.  Once she's reminded, she'll say "Bye!"  Then someone will say "Bye WHAT?" and she'll reluctantly say "Bye, Mama!" or something Bye someone else, if she's not in the mood to remember the right name to call me.  And lately I'm just wondering those useless questions---WHY?  Why is it so so so so hard for her to learn things?  Why does her talking never really progress?  Why if I look at reports or my own blog from 3 or 4 years ago, is her talking at the same level now it was then, or less?  Why does she still often have crying spells where something is obviously badly bothering her but she can't tell us why?  Why does she not progress?  WHY ISN'T SHE GETTING BETTER?

Isn't it supposed to work that way?  Isn't even autism supposed to follow those rules---you start at one level, and with a lot of work, you get to the next level?  And Janey doesn't.  Or she might in small ways, but not big ways.  And around her, other kids with autism do, other kids with other delays do.  I am confident she has the right teachers, the right therapists.  I am even confident, in my better moments, she has the right parents and brothers, that we are doing the right things, the things that should make her able to learn.  After all, we raised her two brothers so far rather successfully.  I know she has autism, I know she has retardation.  But that should not stop her from being able to learn.  Or should it?  I guess I know sometimes it does.  I've read the rare book that does admit that---that's it all not a guarantee in any way, that some kids don't progress.  But, and I'm letting the inner thoughts out here---why me?  Why Janey?  And of course, the answer is Why Not?

So probably I should have taken that good advice and not written if I don't have anything positive to say.  I'll think of this post as what I guess blogs can sometimes be---a diary other people can read, if they are in the mood to get depressed.  And I'll buck up soon, I promise.

There IS progress...

Sometimes it feels like Janey isn't making progress at all, but lately, I've been thinking about the ways she really is progressing. The ways can be subtle and hard to notice, but they are there.

Reports from school lately are encouraging! Mr. Ken, her ABA specialist, told me this morning he's going to start adding more names to a list where Janey finds her own name, as she's getting better at it, and her special ed teacher wrote yesterday that Janey was doing some great letter identifying! I love hearing things like that.

At home, the big thing I've noticed is how much better Janey listens and follows what we say than she used to. I can tell her "close the fridge and bring me a spoon, and then I will give you ice cream" and she'll do all I have asked, if she's motivated. She will pick up on little parts of what we say. I told Tony the other day I was going to take a shower, and Janey loves to have a shower now and then. She managed a sentence that was original to let us know that---I can't remember it exactly, but it was something like "I want have a shower now"

She also shows good planning very often. She knows what has to be done first before she gets what she wants. Last night, she was very eager to go outside, but was in her nightgown getting ready for bed. She went and found some pants, and put them on, and came to us and said "You want to go outside" Pronoun reversal and all, it was great, although we still didn't go out. This morning, she had a notion it would be fun to stop at the chip store on the way to school. I wasn't getting her ready as quickly as she thought I should, so she went and found two socks and brought them to me. They were unmatched, as our socks often are, but I was impressed she knew she needed socks, and also that she understood numbers well enough to know she needed two. We still didn't stop for chips!

The negative part of me looks at all this and says---yeah, she's seven. She can do things that would be fairly normal for a two year old. But the positive part of me knows they are progress, they are steps that are necessary for her to work her way (and our way) toward things being slightly easier for her.

Some of it, the feeling of progress, can't be captured well in words. She just seems somewhat more self-possessed, somewhat more aware of herself and of the world. Not always---sometimes she still seems completely unconnected to us or anyone else, but fairly often. She is looking older, and acting a little older. I am very proud of her. Nothing comes easily to her, or almost nothing. It's all work, and I need to keep looking for signs that her efforts and ours and the schools are working. It helps to keep us all encouraged.

The Golden Week

For lo! the days are hastening on,
By prophet bards foretold,
When, with the ever-circling years,
Shall come the Age of Gold

Although my faith is not as strong as it once was, and in fact I probably could rightly be termed an agnostic, I do love Christmas carols and hymns. My mother is a church organist, and I grew up with the songs of religious music around the house. The verse above is from a late stanza of "It Came Upon a Midnight Clear", and I have always loved it. Lately, it to some extent describes Janey---instead of "ever-circling years", it's ever-circling weeks. She has a week of crying, a week of manic excitement, a quiet week during which she barely talks, an in-the-middle week and once in a long time, a Golden Week. This past week was a Golden Week.

It's hard to describe to someone that doesn't know Janey what her golden times are like, but if you are around her, you can't miss them. It's striking. During the golden times, she talks far, far more---not echolalia, but actually talking---not full sentences, but just hugely more connected words and phrases. She looks more connected---she looks engaged and happy and, if I might say what I wouldn't want others to say, "normal". She seems to suddenly make leaps forward, as if all the work we do with her at home and at school suddenly clicks into place. It's wonderful.

Friday night was a great example. Tony finally got home from two weeks away on a business trip, and picked Janey up. Right away, she let him know what had been on her mind for those two weeks---Chinese rice! She very badly wanted him to get her some Chinese fried rice, and she stayed on message. When he got home, we all were almost on the floor laughing over how much she made sure he was going to order the rice soon, by asking in every way she knows how "I want Chinese rice! I'll get you some Chinese rice! Let's go to Chinese rice! Call the phone!" Tony looked at the menu and remarked if we ordered more than $25 worth, we could get the free crab rangoons, and Janey added that in----"I want free crab rangoons and Chinese rice!". When the food came, she sat down with all of us and ate the rice like a pro, as happy and as connected as I think almost any seven year old would be. At one moment, all five of us were having one of the free crab rangoons, and I had one of those moments where everything just feels perfect---seeing my family all together, all happy, all doing the same thing.

The whole weekend has been like that. Janey is picking up on what we say, using our words in her own phrases, doing cute things like bringing me my pocketbook and saying "California" when she wants to go someplace (she loves to hear "All the Gold in California" in the car), saying "Hi, Nana and Grandpa" nicely to my parents on the phone, reading with me happily, dancing with us----it's been great.

And I wish, I hope, I dream, as I always do, that this is not just a cycle, that this is THE turnaround, that she will stay this way forever. And because hope springs eternal, I think that it could happen. But it's unlikely. We've had times like this before, and then they end. But the fact that they can happen keeps us all going, I think---our family, her school family and all of us. She's my amazing little girl.

No news good news?

I haven't written in a bit, and mostly, that has been because things have been going pretty smoothly, which shouldn't keep me from writing! I know I should write about the better times too! Janey has been very happy so far at school this year. She seems to fit in very well with her new class. I loved the kids in her old class, but I think they saw so much of the tough Janey times that they were a little wary of her, and also tended to treat her like a younger sibling. These new kids are mostly a little younger than HER, and haven't known her right along, and Janey is actually making friends! She's always had kids be friends to HER, but she is being a friend back! She actually walks off down the hall to her class with other little girls, and plays with them from all reports, and even says their names when prompted, and sometimes when not, at home. It thrills me. She is talking more about school, or more, answering questions about school. She will say what room number she is in, and say "Ms. Allie" when we ask her teacher's name (Ms. Allie is the para that works with her the most, and she is so wonderful with Janey). Ms. Samuels, the regular ed. teacher, says Janey has asked her to play Miss Mary Mack all her on her own (another wonderful sweet person in the room) and the sub. special ed teacher seems great. It's all coming together so well. Ms. Janet, the speech therapist, is just thrilled with what she sees Janey doing this year. It's great to see the happiness she brings to the people she works with, as I think they can see the fruits of a lot of years of frustrating and sometimes non-rewarding word. And at home, it's so exciting to hear actual sentences now and then. Today, when Tony didn't jump up to fill her request, she said "Daddy, I WANT some PASTA!" Later, when the phone rang, she said "That would be the phone" I think she got the wording from Kipper. When I tried to put some pants on her she doesn't like, she said "NO, I don't want the pants!" All three just examples I can remember from today.

Of course, all is not perfect. This weekend, along with the great talking, we were seeing a return of the tantrums and some crying. It made us realize how smooth things have been for a few months. We went yesterday to dinner at my friend Christine's house, and Janey usually loves it there and is well behaved, but last night she was not. She kept demanding things, crying, and at one point threw a toy hard across the room. I am coming down harder on her for things---making her pick up the toy, put it away and say "sorry" to Christine. I think now that I am feeling she is understanding things a bit more, I need to work on the things I have sort of neglected. We for a few years now have gotten her pretty much what she asked for, in terms of food or drink. This is because she talks so little that we wanted her to learn that asking for something verbally is worth it---that it actually has a result. But I think she understands that now, and I am more often saying "Not right now" or "no". Maybe this is bringing on the increase in tough behavior. I am also working more on trying to get her to tell me why she is crying. Mostly I just try to get her to say "angry" or "sad". Last night at dinner I took her outside and asked her if she was sad, and she said "ANGRY" and then added on her own "Angry at MAMA". I asked her why, and she actually answered, and said "NAILS!" I don't know what she meant, though, I hadn't cut her nails recently and I don't know what other nails she was talking about, but it was something to hear anyway.

She is looking older and getting taller. Often now people who don't know her ask her questions like you would ask any six year old. I am never sure what to do. Sometimes I answer for her, sometimes I try to repeat the question in a way she will understand (although it's a shot in the dark to hope she answers at all) and sometimes after a few questions I say "She is autistic and doesn't talk much, but you never know!" just to not make them feel silly for having asked or anything. Sometimes it's a little sad thinking that they are asking perfectly normal questions to ask a child her age, and to me they seem impossibly difficult---like someone asked her yesterday "Do you have school tomorrow?". She has no clue what days are school days and what days aren't, to say nothing of holidays. Or they ask what she likes to do at school, or if she likes school. I look at the 1st graders who she used to be in class with, and it just astonishes me that they can chat away about all kinds of things, and are starting to read and write and add. Even though I had two kids who did those things at that age---it seems seems almost like a miracle that any child can. But we can celebrate her little steps.