"How was school today?"

Shortly after Janey started K0, which here in Boston is what they call public preschool for 3 year olds, I asked her one day after picking her up how school was.  She said "We did music with Mr. Tim.  We sang a snowflake song"  I was a little doubtful, as it seemed early in the year for songs about snowflakes, but I asked her to sing it and she sang a little.  That's all I remember about that conversation.  I wish I remembered more.  It was the only time Janey was to ever tell me about her day in school.

Writing that, I'm crying a bit.  I don't like that much to think about Janey pre-regression.  Her regression was late and severe.  It started a bit before she started K0, a class she was in not at all on an IEP or in special ed, but that she got into because Freddy was at that time in 5th grade in the same school.  The first day of school, I mentioned to the special ed teacher in the classroom (as it was an inclusion school and each room had both a regular ed teacher and a special ed teacher) that I was starting to have some concerns about Janey, and I asked him to let me know if he saw anything that made him share those concerns as he got to know her.  It was only about a month into the year when he said he did, and it was a couple months after that that Janey was formally diagnosed as autistic.  During those months, she lost nearly all her speech.  It has never returned to the level it was when she was two.

I am very grateful that Janey does speak verbally at all.  I know it's something never to take for granted, something that so many mothers of children like Janey would love to hear, to hear a single word ever from their child.

It's still hard, though, to think about when Janey talked more.  Usually, I just don't.  I don't watch, ever, the few videos we took of her talking.  Even though I don't watch them, I wish we had taken more.  You don't think about that.  You don't think that the chattering of your two year old might be something you never really hear again.

During our cross country trip, during which Janey turned three, just before starting the K0 class, we stopped at the Custer National Battlefield in South Dakota.  In the gift shop, Janey saw a family with a girl about her age.  She walked up to them and said "Hi!  I'm Beautiful Janey!"  We still laugh often at that.  She had been hearing from relatives we visited on our trip all the time how beautiful she was, and I guess she'd internalized it pretty well.  I remember that moment so vividly.  It was another last, the last time I remember her ever introducing herself.

Another time, shortly before the trip, Janey started singing "Elmo's got a gun..."  I asked her where she had heard such a thing, and she said "Freddy showed it to me, on the internet"  There was a Sesame Street parody video featuring that song, and Freddy owned up.  That was the one and only time ever she told on her brother.

For a long time, I thought Janey's speech would some day come back to where it was when she was two.  It ebbs and flows, but it's never come close to that level.  Sometimes I read old blog entries and realize that it's not as good now as it was when she was around 6 or 7.

Janey knows a lot of words, words that seem stored and that come out only on rare occasions.  A few days ago, I was reading her "Go Dog Go", her favorite book, and for some reason I asked her what the dogs on the boat on one page were playing, and she said easily and quickly "A banjo" which was completely correct.  I had no idea she knew that word, or other words she's used in that same context, to answer a direct identification question---"raccoon", "drawbridge", "crab", "volcano"---to name a few I can think of.  But in daily life, she uses mostly one sentence, modified slightly for what she wants..."I want cheese.  I want soda.  I want snuggle on Mama's bed"

Every day, every single day, when Janey gets off the bus, I ask "How was school today?" Every day, she doesn't answer.  I don't know if she ever will again.  And I wish, like the old song, I could have saved time in a bottle, and could hear again that one time that she did tell me how her day was.  I wish that a lot.

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.

When Janey was diagnosed

When reading accounts of parenting children with autism, the moment that the family receives the autism diagnosis is almost always written about in detail.  I was reading a few such accounts lately, and it struck me that, although Janey being diagnosed was certainly a fairly major point in the timeline of our lives, I don't remember it as being quite as stark a blow, as frozen in time a moment as often seems to be the case.  I didn't remember the date until going back to the first entry of this blog---it was Saturday, December 8th, 2007.  Janey was three years and almost four months old.

I started thinking tonight about that time, and it became clear to me quickly why it seems a bit of a blur in memory.  It was a horrible time, in many ways---I can say Janey's diagnosis was one of the least troubling parts of the months around that time.  The month before, in November, I had been put on a jury of a murder trial, an incredibly sad murder of a four year old boy.  It lasted three weeks, putting a huge strain on everyone emotionally and logistically.  Janey had started 3 year old preschool in September, half a day, at the school the boys had both gone to, as a regular, non-special-ed student.  So someone had to get her in the middle of the day at school.  Tony missed a lot of work.

While I was on the jury, in the middle of the testimony phase, my sister's fiancee died suddenly.  He had been recovering from heart surgery related to Marfan's Syndrome, and it looked like all was going to be okay.  Getting the call that he had died---I can't even think about it, ever, without crying. The sadness I felt for my sister, and the incredible frustration that I couldn't even go to the funeral, couldn't be there for her as I wished I could without disrupting a huge trial----it is with me still.

Other factions were stressing us strongly during this time.  A very close friend from childhood was going through a family crisis that I won't get into except to say it was the worst family crisis you can possibly imagine outside of a death.  The boys were in 5th and 7th grade, both having a somewhat tough year.  Tony's office was on the verge of closing, and he was looking for a new job within his organization.  And in the background, always, there was the creeping realization that something was happening with Janey, something terrifying.

Janey, about a year after diagnosis

I wish I could remember more about the year Janey was two.  If I had known it was the last year she would talk easily, the last year I'd have a conversation with her, the last year she'd seem truly happy---well, I can't write much about that.  I just wish I'd recorded every minute of that year.  Then again, maybe it's good I didn't.  I have never been able to watch the few videos we do have.

The August before Janey started preschool, we took our three week cross country driving trip.  I've written about that before.  I had started noticing some signs of withdrawal, of odd behaviors, in Janey that June, but it was during the trip she seemed to slip further away.  The day she started school, I asked the special ed teacher in the room (her school was an inclusion school, with a regular and a special ed teacher in each room) to let me know if he had concerns about her.  It was, of course, during the middle of the trial, on an afternoon we had off, so I was able to get her at school, that he told me he did have concerns---quite major concerns.

And so---we got on the fast track to have her seen at a clinic.  She was evaluated (after I filled out realms of paper and did lots of phone interviews) by a developmental psychiatrist and a developmental pediatrician.  And that was the day, that Saturday, that they told us she was autistic.  We got a formal report later on, but by that point, they didn't need a lot of time to see what was pretty obvious, so they told us the same day they saw her.

I don't remember the rest of that day.  I don't remember crying, although I'm sure I did.  I don't remember what we did after the visit.  I don't remember much.  Maybe that is why I started the blog, three days later, to start recording what was happening, to not let it slip away like the first three years of her life seem to have in my mind.

In some ways, maybe it was good that her diagnosis came in the middle of such a stressful time.  Maybe it let us not focus on it.  But I think it also didn't let it quite sink in.  For a variety of reasons, I don't think I truly believed it.  I think I thought we'd have some tough years, sure, but I think there was a part of me that felt it all was a mistake, that I'd play along but not really buy into it all.  Maybe that was my way of coping.

I'm going to write soon about what I wish those early days after her diagnosis had been like, and what I'd do if I knew someone going through early days like that.  But for now I will stop, because I want to come back to the here and now.  I'm glad many years have passed from that time, and our lives are calmer.  I'm glad I will never have to relive 2007.  I'm glad to be here, in 2017, living today's life.  Very glad.

Fictional Moments in Autism Parenting

Before I became a real, live parent of an autistic child, I used to read a lot of books about children with autism.  They formed kind of a sub-genre of parenting books, and I found them compelling.  It's a lot harder to read them now, although I sometimes try.  What makes it hard is that those books all seem to contain some elements that are sorely lacking in my life.  Here's a few of those moments (of course overstated and with fictional therapies, but indulge me!)

The Doctor Denial Moment

"Although little Florence was slipping every day more deeply into the abyss of autism, when we took her to our trusted pediatrician, he patted her on the head and said 'She is just fine!  Every child develops at their own rate!  You are over-anxious parents!'  It took thirty-one more visits to doctors, specialists and finally calling in some favors for her to be seen by the world's most celebrated autism guru for her to finally be diagnosed"

Janey's autism, when it hit, was apparent to strangers on the street.  No-one ever called me an over-anxious parent, although I would have loved to be called such.  She was diagnosed as soon as we asked for her to be evaluated.  There was no question.

The Immediately Choosing a Therapy and Having the Money to Pay For It Moment

"As soon as Florence was diagnosed, we did some research and decided the Colpepper-Smythe Regiment was the therapy that would be her savior.  Although it cost two million dollars a year, and required flying in therapists every week from Albania, and completely remodeling our house, we had faith it was all worth it.  I must admit it was a little bit of a financial stretch.  We had to forego our yearly upgrade to the latest diamond-studded car, but that is how much we cared"

When Janey was diagnosed, we let the school she was already attending know, asked for an IEP meeting, and when it was held, agreed to the very reasonable course of therapy they recommended.  We didn't seek outside therapy, because all of us were selfish and enjoyed eating too much to absorb the financial stretch of giving up food that outside therapy would have required.

The Breakthrough Moment

"After two years of around the clock therapy, without the slightest sign of progress, suddenly there came an amazing moment.  Florence looked at us, said with a smile 'I'm all done being autistic now!', read 'War and Peace' aloud to us and went to the computer and applied for extremely early entry to Harvard, all at the age of four.  It was then that we knew our faith and devotion had been rewarded"

Janey has yet to have a breakthrough moment.  She has lots of amazing little moments, and we love them, but none of them have "cured" her.  In fact, in many ways, she's very similar to how she was at age three, when first diagnosed.

The Passing for Normal Moment

"We decided to put off Harvard for a few years, to give little Florence a chance to enjoy a normal childhood.  We enrolled her in the local pricey fancy private school for completely normal kids, and we knew it was working when her teacher, who we had never told the sordid secret of Florence's early brush with autism,  called us and said 'Of all the normal kids in Florence's class, she's the most normal of all.  I'm saying this to you for no reason in particular, but she would never be mistaken for a child with autism, not THAT super normal girl' "

Janey is not going to have a moment like that.  I am not selling her short to say that.  I no longer preface remarks like that with saying "short of a miracle".  Janey is autistic.  She is going to stay autistic.  That is the reality of her life and our life, and I am gradually starting to feel that hoping someday she will be "cured", she will be "normal" is like hoping some day she will no longer be Janey, and Janey is here to stay, and I love her.

20 years of motherhood

Twenty years ago today, I became a mother.  I did so in dramatic fashion, with my son William entering the world two months early by emergency C-section after my pre-eclampsia had reached life-threatening levels, both for him and for me.  He weighed three and a half pounds, and I spent the first day after his birth in intensive care, with a dialysis machine on ready if my kidneys didn't start doing their job.  Luckily, they did, and luckily, William was out of the hospital in 3 weeks.  Today, we were with him at the moment he officially turned 20.  He is tall, smart and fun to be with, a sophomore in college.  But 20 years ago, we couldn't see the future, and we were terrified.

I think this start to motherhood affected me deeply.  From the very first minute of being a parent, I was taught that things don't always go as planned.  I never had even a minute of parenthood that wasn't coupled with that knowledge.  As William grew, and as his brother Freddy was born, I always felt a little on the edge of a cliff.  I never quite let my guard down.  When scary things happened, like both boys having asthma that at times led to rushed trips to emergency rooms, when Freddy screamed for the first three months of his life with colic, when we dealt with the ins and outs of parenting, I often felt surprised at how well most things did go.  My boys grew into themselves, discovered passionate interests, made us laugh with their insights and humor---I realized I loved being a mother, even if I was often holding my breath, waiting for what might come next.

And then came Janey.  And I realized that things don't always happen in an instant.  They sometimes happen slowly.  They take unexpected routes.  Our main worry about Janey for her first three years was her delayed physical development.  She finally walked after her second birthday.  She was talking quite a bit by then--in slightly odd ways, but well enough so that even though she was closely followed by Early Intervention for her physical delays, there was never even a suggestion of speech therapy.  It was when she was about 2 months shy of 3 years that I first had an inkling, a creepy feeling that something was changing.  Over the next six months, a little each day, she lost ground.  By the time she was diagnosed, at 3 years, 4 months, I was prepared.  I had had those 6 months to realize what was happening.  By that point, there was really no question.  She barely spoke, her eye contact was almost gone, she stared at her hands for long periods of time, she cried suddenly and fiercely over things none of the rest of us could figure out.

Her diagnosis didn't feel like a surprise.  I think I had been braced for something like that from the moment I became a mother.  The fact that she has progressed very little over the years, that she is most definitely on the lower end of the spectrum, that although she delights us every day, strangers on the street can and do see her autism at a glance---it somehow feels like something I saw coming that day 20 years ago.

Despite that, or maybe even because of it, being a mother is still the most wonderful part of my life.  Every day, my kids delight me and surprise me.  Every day, they amaze me.  When I think that I am the mother of three children, that I have raised three unique, fascinating, extremely cool kids---well, I sometimes still feel like I did 20 years ago---amazed and stunned that it has all happened.  Motherhood doesn't come with any promises.  It doesn't come with any sure paths, with any guarantees.  But it comes with rewards, so many rewards, and hugging my 20 year old son tonight while my other son and my daughter laughed and watched---that was one of the best ones.

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.

Growing out of autism?

This article is one of many that have been in the news lately about a study showing that some children grow out of autism, lose the diagnosis.  It's a study in the early stages, as they haven't yet talked about what was done differently, if anything, with those children, or some ways the children might have been different from other autistic kids from the start.  But it certainly caught my interest.  In some ways, my life is a laboratory for that study. My older son was originally diagnosed as autistic, and now is in no way autistic.  And Janey, of course, is severely autistic and I am pretty sure always will be.

You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this.  The study only accepted diagnoses from experts in autism.  Both my kids were diagnosed by fairly well known leaders in the field, so that counts.  But there are huge difference between them, and were from the start.

The big, big, big difference is cognitive ability.  Janey is intellectually disabled.  There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed.  She didn't walk until she was 2.  Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids.  She even was/is delayed in physical ways---she didn't get teeth until after her first birthday.  William was never cognitively delayed.  He spoke at an incredibly early age, and he was obviously quite a bright kid from the start.  I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.

Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't.  It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey.  We may have used that to react differently to him. I don't think so, but it's possible.  Janey blindsided us at age 3.  She has early intervention, but it was only for her walking delays.  It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.

The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert.  I think he had a collection of traits that made him appear autistic.  Part of that is just personality.  It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz.  He's a hard worker, and he gets very involved in what he loves doing.  That showed up early.  He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things!  And as you grow up, having the ability to get very into things isn't bad.  It is what makes experts, professors.  It's probably what has resulted in most all great inventions and steps forward in history.  I think autism is something that shouldn't in some ways be diagnosed until around age 7.  Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment.  They should.  But do they have to be called autism that early?  By the time a child is 7 or 8, it will be obvious who is autistic and who isn't.  Janey is autistic.  There is zero doubt there.  William isn't.  There is zero doubt there too.

The other message I want to put out there is that I didn't do anything magical to make William not autistic.  I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that.  I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life.  He was the one that changed.  I didn't make him change.  That sends me a message about Janey.  I am doing the best I can for her, but I don't think there is some magical key that will unlock her.

I look forward very much to following this study as more information comes out.

Does it get easier?

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

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

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

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

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

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

Intellectual Disability...Finding out what I already knew

Tony and I had a meeting yesterday with the developmental pediatrician that tested Janey a few weeks ago.  She, like many people before, hedged on giving us anything like an IQ score, but she told us that on the tests she did (which were actually for kids younger than Janey, as tests for her age would probably be totally unusable)  Janey tested as low as she could, beneath the 1st percentile.  She said at this point Janey could be diagnosed as having, in addition to autism, an "intellectual disability".  Which means, to use the older phrase, retardation.  She said that can't be diagnosed before age 7, which is part of why it wasn't diagnosed before.

So...well.  I already knew that, of course.  But hearing it still wasn't a great deal of fun.  I know Janey has skills the test can't test, but overall, I know it's correct.  The doctor said Janey can't be expected to ever read for meaning, to do much of anything ever academic, and that spending much time on academics is a bit of a waste of time for her.  She thinks Janey needs a different school placement.  I don't agree there, for now.  Janey will stay where she is at least until after 5th grade.  But I do appreciate getting a longer term view of what can be expected.  Which, frankly, is not a lot of progress.

I don't mean to sound like I'm giving up on Janey.  I know what the movie or book or dramatic response should be.  I should say "I'll prove you wrong!" and go on to work tirelessly with Janey every second, right up until the day she graduates from medical school.  But that's fantasyland.  I will never give up on Janey, but I live in realityland.  I can see it's extremely hard for Janey to learn.  I am devoted to her---to giving her the best life I possibly can within her limitations.  I don't think it serves her to try to make her be what she isn't.  I want to work to her strengths, and she does have strengths.

For some reason, all this has been making me think about religion, and how I wish sometimes I could be more of a believer.  This is partly because when I read other blogs, it seems like it's such a help to many parents of autistic kids.  I keep thinking about the phrases "God only gives you what you can handle" and "God has a plan"  I know those aren't Bible quotes, but they are said a lot by people that are believers.  I feel like whoever doles out challenges, God or fate or whatever, has given me a lot more than I can handle, or maybe I should say handle well.  You handle what you get, because what choice do you have?  But no-one gets my best.  I can't be the parent I want to be to any of my three kids.  I can't be the wife I want to be, or the friend I want to be, or the community member I want to be.  And if God has a plan, in some ways that makes me less likely to be a believer.  It seems like it would be a mean kind of God who would make plans that involve making a little girl autistic and intellectually disabled.  I know it's supposed to be part of a bigger picture thing.  But I don't think that's the God I would choose to worship.  I hope I am not insulting anyone saying this.  I have the hugest respect for people that believe.  I truly wish I did.  I can't make myself.  I wish I could.  All I can think of to keep a possibility of faith alive is that maybe it is part of God's plan that I don't believe right now.  And it's a little convoluted!

So, we go on.  Nothing has changed.  I heard what I already knew.  Janey is who she is.  I love her, as Mr. Rogers taught me to say, just the way she is.

Baby Einstein, Julie Clark and "crucial early years"

Janey is a huge fan of Baby Einstein videos. I am not. She loves the music, the toys, the soothing voices, the silly puppets, the whole bit. She's way past their target age, but of course not developmentally that far past, although somewhat even there. We let her watch them, including some in French I bought by mistake at a yard sale.

In every single Baby Einstein video, the founded of Baby Einstein, Julie Clark, gets on and talks about how great she is. Of course, not literally, but that's the message you get. She has two adorable blond girls, who are on the videos a lot, and she says in her sweetie-sweetie voice essentially that if you use her entire line of products, your child will be perfect. Again, not literally. She actually talks about how they are used to INTERACT with your child. Parents are shown interacting, which mostly seems to be pointing to the TV while a baby stares at it. Sure. Like those parents aren't hurrying into the kitchen to make up a cup of coffee and have 10 minutes to read the paper while the kid is entertained. Or maybe they aren't. Maybe THAT'S why I've got an autistic daughter! And of course that kind of message is the hidden one. You want your kid to be NORMAL, don't you? And not just normal, but BETTER than normal? Here's a shortcut way to do that!

And that gets to something that has been bothering me lately---the whole notion of those "crucial early years" And especially as that concept relates to autism. I see articles all over about how to diagnose autism in very young kids, so you don't miss those early years to work with them and make them "normaler" It bothers me for a couple reasons. One is that Janey was a late bloomer when it came to autism. She was not diagnosed until she was 3 years, 4 months, and although I might have been terribly wrong, I don't think she showed serious signs until just before she turned 3. She was discharged from Early Intervention at 3 with few concerns---she has been in it for her motor delays only. There were little oddities, of course, but she was certainly not a slam-dunk, anyone could see it autistic child until that age. So we missed a good potion of those "crucial" years. And then I took what was probably a slacker approach. She got an IEP, she started therapies, but I didn't do a full court press. I didn't insist on 25 hours of ABA a week. She was not even in a full day preschool for the first 2 years (although I was angry about that, but chose to leave her at the school I loved instead of move her to another one where she would get a full day). I didn't ignore her autism---you can read this blog that started right after she was diagnosed if you want to decide for yourself---but I didn't go as all out as I could have.

And why is that? Partly because I was just not sure that I believed any one approach deserved that much of her time. I think ABA is good, done well, which it took us a long time to get done well (thank you, Mr. Ken!). I think strong teachers are good (thanks to all of you!), but I just don't think there is any one thing that needs to be done in huge amounts to "fix" Janey. It's partly that I think it's both too late and not too late. It's too late because although I am not sure what caused Janey's autism, I am pretty sure it's something that happened when I was pregnant, or long before that, when some autistic little genes came together somewhere in Tony's and my ancestors. It's not too late because I think one of the hallmarks of autism is a delayed learning period. Janey still learns new things all the time. It's slow to see, sometimes snail slow, but I see her using words she hasn't before, I see her becoming closer to being toilet trained, I see her accurately "reading" her videos to see which one she wants, I see her asking more easily for what she needs, I see her catching balls and running like a champ and getting excited when I tell her school is in 4 days.

I don't think Janey is going to catch up, to be "normal". Of course, I dream of it. Of course, I hope I'm wrong. But I don't think it's fair to her to spend her whole childhood in pursuit of that dream. If she can be happy, if she can enjoy life, on the days I see that dream within reach, she is living a valid life right now. Despite what I think Julie Clark would say.

1 in 88???

The big news today of course is that the CDC says autism is being diagnosed even more often than before. (here's the article) I have two reactions, both based of course as anything I say here on my own personal thoughts and feelings.

First, I don't think the rate of autism is truly rising as fast as they say. I think the rate of autism being DIAGNOSED certainly is, but there's a difference. My evidence here is my own children. As I've talked about before here, my older son was originally diagnosed as autistic, later, at age 4, changed to Aspergers. As the years went by, the diagnosis seemed less apt to me. At around age 8, he was in a couple studies, and testing during both showed he didn't at that time meet the criteria for Aspergers. Of course, autism spectrum disorders are supposed to be for life, except in rare cases. Those cases are the kinds books and movies are made about, where incredibly dedicated parents (or Jenny McCarthy) do everything in their power to "cure" their child. That wasn't me. I'm dedicated, but not that focused. William got good quality inclusive special education help and therapy at school, no ABA, no diets, no miracle cures. He just, in my eyes, didn't actually have Aspergers. He was a preemie, he had a strong and unusual personality, but he wasn't on the autistic spectrum. Today, William is 17, the top student in his class, a pretty decent guitar player and a very, very cool person. He's quirky, but we're all quirky. He has not had any special services at school since 5th grade. None. But the state still considers, if they have statistics some place, that he is autistic. We still get mailings from the Department of Retardation for him, which I hide and which I have tried and tried to call and have stopped. He's looking at some Ivy League schools---a stretch, but not an incredibly big one. I don't think he needs those services. But yes, he'd be counted as one of the 1 in 88.

And then there's Janey. I don't need to tell her whole story. But she's one of the one in 88, and rightfully so. Knowing the two of them fairly well, as I can say I do---it's a huge world of difference. About as huge as I can imagine. Aspergers, however, even for people that really do have Aspergers, is grouped right along with autism. Kids like the son of a close friend, who is probably the single brightest person I've ever known, are grouped with Janey. This paints a very confusing picture for the general public. Is autism someone like Janey, or is it something else entirely? If you can only get services to help your high functioning kids, kids that might very much indeed need help, by calling them autistic, would you? I guess I did, once. I didn't call him that, but I didn't know any better, and I accepted him being called that, something that now that he's old enough to understand, upsets him a great deal when he thinks of it, although I wish it didn't.

So that's my first thought. My other thought---if this is true, if somehow the rate of autism keeps going up and up and up, what are we going to do about it? It's a horrible emergency, if it's true. If one in 88 kids is going to need help in life like Janey is going to keep, then there's going to be a HUGE cost. A monetary cost, but also a huge cost to families. I know how having a child with autism affects a family. I love Janey with all my heart, more than I can possibly say. But she is tough. Very, very tough. And I have a supportive husband, great older kids, a wonderful school system with fantastic teachers and therapists---I have all that. If I didn't, I don't know how I'd do it at all. And if there are really that many kids out there with autism---well, the nation is in for a shock.

I worry about the short attention span of causes. If autism is rare and something fascinating and interesting, celebrities and all will jump on the bandwagon and help. But if autism is common and wearing and no longer a novelty, I can picture a backlash. This is the case whether these kids have Janey-type autism or Asperger type autism. I can see public skepticism, public boredom. It's how the country works. For a while, everyone thought about Haiti all the time, or Japan after the earthquake, or New Orleans, or so on. Then, gradually, they fall out of the news. and although there are still dedicated people working for those causes, people's minds can only seem to hold so much caring at a time. I worry about that. Because all these autistic kids aren't going any place.

And so I'll do what seem to always do---think extremely locally. So locally that the local place is my own house, my own family. I will be there for my own little 1 in 88.

What if I knew from the start?

I just finished a book I really liked---"The Year My Son and I Were Born" by Kathryn Lynard Soper. It was about the first year of her son's life. He has Down Syndrome, and she wrote so honestly that it was truly moving. She had a very hard time dealing with the diagnosis, and depression partly resulting from it. One point she made that really hit me was about decision making---how if you make a decision about your child based on what you know at that time, and using the facts and your emotions and your knowledge of your child, even if it later turns out it was the wrong decision, you can't regret that, because it was the right decision for you when you made it. In other words, second-guessing is a useless emotion. I need to keep that in mind---that's powerful stuff.

The other big thought the book set off in me was wondering what it would have been like to know from the time of Janey's birth that she had autism. How would that change things? Would it have been better, or worse? I can think of things both ways. It would have been heartbreaking, and I think it would have made the first year a lot harder, as I would have been dealing with a lot of emotions at the same time I was just trying to get through that first year of babyhood, which is hard in any case at all. But I could have started sooner with any kind of early intervention for autism, which might have helped (and might not have helped). If Janey's development had been the same as it actually was, except I knew she was going to regress, it would have been heartbreaking in a way to watch her talk in ways I would have known she'd never maybe talk again. I think a lot about a doctor's appointment when Janey was just turning two. She had it along with Freddy, since they have the same birthday. It was Freddy's turn first, and Janey spent his whole appointment trying to catch our pediatrician's eyes and connect and flirt with him in that two year old way, and at one point he said "Well, at least we can say she's not on the autistic spectrum!". I can't think of that moment, ever, without crying. He was looking for signs she was, due to my older son William at one point being diagnosed as on the spectrum, and even LOOKING for signs, he didn't see any. And about a year and a half later, no-one would be able to look at Janey and NOT see she was autistic. So maybe ignorance was bliss in those early years. We worried a lot about her, but it was because she wasn't walking. You can see it in pictures of her---you can almost see the month she started showing the signs. Her eyes change. Like my eyes are changing right now from my tears.

Janey is doing very, very well the last few days. She is doing some fantastic talking, and greeting of people, and connections. I should be writing about that. And I will. But right now, I think I'll take a little nap. I need it.

A few minutes later

I've given in to TV. I am desperate for a break. Janey is watching Sesame Street. I justify this by the fact she did say PBS Kids---she asked for TV! Sure. I am guilty all the time---about everything.

Everything is happening fast. I got a speeded up apointment last Sat. with a team of a psychiatrist, developmental pediatrician and speech pathologist. They all agreed---Janey is autistic. They think there is more, though. She might be having seizures. She might have a brain abnormality---she had an MRI at 18 months to try to figure out her late walking---she finally walked at 2. Her heart sounds like it's in the wrong place in her chest. We see her pediatrician today. I haven't seen him for over a year. This is partly because Janey is very healthy in terms of the usual things---no colds, fevers, throwing up---she is extra healthy. Also, I was having a year of denial. After Janey started walking, and was talking more and more, I decided she was fine. And she pretty much was---until a few months ago, when her talking took a nosedive and she started acting more and more oddly. She started preschool in September, not as any kind of special ed student but as a regular ed preschool kid at the inclusion school her brothers went to. She is in the same classroom her younger brother was in 7 years before. It didn't take long for the teachers and therapists in that classroom to realize they had a special ed kid hiding in a regular ed label there. I had hoped somehow they would never guess. Mostly because I hadn't let myself guess yet.

People all care. People have been wonderful the past few days. It helps a lot. However, I still feel very alone. They aren't responsible for Janey---I am. I am the one sitting here writing while she runs around the house saying "A pie, a my, a pie, a my, see, a lee, see, a lee" She loves rhyming. But it's not fun rhyming---it's instead of speech, not a great phonics tool to help speech.

I am tired of autism already, and it's only been 3 days.