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.

Autism Mother Myths and Truths

If I picture, without taking time to think much, a typical autism mother...well, do it yourself.  Just form a quick picture in your head of what you'd think of when you think "autism mother".

It's a strange exercise, because despite being an autism mother myself for a long time now, what I picture doesn't look much like me.  I picture a warrior.  I picture a mother who would do anything, anything at all, to help her child---a mother who fights for her child on every level every day.  This mother works day and night to get her child everything that might possible help them.  She also is completely devoted at home to her child.  She cooks special diets, she fills each day with enriching activities, she is completely accepting of her child while somehow also completely determined to give her child what is needed to live a life as close to "normal" as possible.

That's not me.  It's not anyone, really, or it's very few people.  I've been trying to figure out where the image comes from, and I think it's mostly from books.  Autism mothering books don't seem to be quite the vogue they were for a while, but when they were (I think the heyday was the 1990's), they seemed to follow a formula.  Child is diagnosed.  Mother briefly is overwhelmed and horrified, although of course she knew from the start something was wrong and had to fight to get doctors to see it.  Mother decides on a course of action to "cure" child, and follows that course without rest.  There are some tough days, but then there's a miracle breakthrough.  And at book's end, the child is either completely non-autistic, or they are still a little autistic but only because that autism helps them to have some amazing talent.  Not every book is like that, but a very lot were, and I'm a devoted reader.  Before ever having Janey, I knew just what an autism mother was like, and strangely, all those years later, I still kind of have that stereotyped picture.

What are autism mothers really like?  They are, at least to start, the same as any other mothers.  They aren't specially chosen. 

I can speak best for myself.  I'm no warrior.  I back away from any fight I can, or even any disagreement.  I'm not good at doing anything without rest.  If I knew a way to "cure" Janey, I'd probably be a slacker and not really do it very well.  OF course, there isn't a way to cure her, and that would not be my goal at this point even if there was.  I didn't fight for Janey to be diagnosed.  I didn't want her to be.  I am sure I was in quite a bit of denial, back then, but by the time she was diagnosed, it didn't take a lot of fighting to diagnose her---it was pretty obvious to almost anyone what was up.

However, I would have to say there ARE some traits of autism mothers.  They are traits that we develop, from living the autism mother life.  We don't have them to start, but we have them after some years of raising out kids.

What are they?  Well, protectiveness is one.  We might not be warriors, but we are ever vigilant.  We know how vulnerable our kids are, and we are constantly, every minute of our life, prepared to do what it takes to keep them safe.

Ability to live in the moment is another trait.  We can have a day which most parents not living our lives would consider about the toughest day of their life, and wake up the next morning, and if things are better, we can enjoy the new day.  We've learned things can change on a dime.  I'm willing to bet as a whole we are dealing with less anxiety than most with the whole COVID-19 bit.  We know how to live with uncertainly and stress, for sure.

I'd say most of us have a pretty good sense of humor.  We can laugh at ourselves, and laugh with our kids.  We see life's absurdities, see how what so many people take so earnestly isn't really as important as they think. 

That goes along with the next trait---an appreciation of what's really important in life.  We have come to know that it's not education.  It's not money.  It's not a perfect house, a fancy vacation, an active social life or a high IQ. Our kids teach us that.  The important things in life are the very little things and the very big things.  It's coffee in the morning and a song everyone sings along with.  It's a meal that we all enjoy, it's a movie we've seen a hundred times but still like.  It's running around in the driveway and getting a good night's sleep.  And it's love---loving our kids, loving them exactly as they are, loving them after a day full of screaming or a day full of manic laughter, love filled with pride, love sometimes mixed with tears, but love over all else.

I have to say---the mothers I have met that are living this autism mother life with me (and the fathers too, but in honor of Mother's Day, today is for the mothers) are amazing people.  We have a bond forged by shared experiences, and I would venture to say every one of us is a better person because of our loved ones with autism.  Happy Mother's Day, with much love, to the autism mothers out there.

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.

"I am angry, Daddy"

A few nights ago, when Tony had just come home from work, Janey went over to him and spoke the words in the title---"I am angry, Daddy".  It's hard to describe, but I think many of you are familiar with what I'm talking about when I say those moments are sort of like miracles.  They make you feel like you are in a dream, or living another reality.  For Janey to just go over and say that, and not reverse the pronouns, and state clearly how she felt---well, it's something amazing.

When I think about it, it's also something we have worked hard on, and so has her school.  Both the school and we have worked for years on helping her identify emotions. But still...to have her suddenly say something like that, it always feels unexpected.

I used to read a lot of books about kids with autism, before I had such a child.  Call it premonition, or something.  Now I realize many of those books were selling a bill of goods, not intentionally, of course, but still, they often showed miracle type cures, or else cures that came about by parents so devoted that no-one in the real world could ever copy their methods.  And I know, now, that some kids do change radically.  I'm not saying they don't change as a result of help from those around them, but other kids can get that same help and change much less, if at all.  You aren't going to grow a sunflower from a marigold seed, even if both get the same care.  And getting a marigold is great, not bad, but if you write a book about how you grew a sunflower from a tiny seed and anyone can do that, even those with marigold seeds...you are not quite getting it.

In those books I read about autism, I would often hear of moments like the one where Janey said what she said, and I'd think "There!  They did it!  Problem solved!"  Those of us who have now lived the life now that's not how it works.  Doing something once doesn't mean it will happen again right way, if at all.  I don't expect Janey to suddenly clearly state every feeling she has.  But it's wonderful to know she CAN.

After Janey told Tony she was angry, he did one of the twisted sentences we often do.  He said "What Daddy can do to make Janey feel less angry is....", leaving the sentence open for her ending.  We do that to sort of pre-populate a sentence, so she can fill it in.  And she did.  She said "say 'Achoo, A Sneaker, A Sandal, God Bless You"  That might not sound like it makes a lot of sense, but it does.  Janey lately loves to have us pretend to sneeze, and then to say "God bless you" to us.  And Tony often pretends to sneeze by saying "a shoe, a sneaker, a sandal..."  So, we played that game for a while.

A few days before Janey's big statement, her brothers were here working on their financial aide forms, and Janey was very upset.  I took her aside to calm her down and did some guessing, saying "Janey is angry because Daddy is busy" (he was helping the boys).  Janey repeated but changed what I said, saying "Janey is angry because William is busy"  And indeed, when I let William know she needed some attention, she was much happier.  We are realizing that often what she seems angry about is when we aren't paying her enough attention.  I think we usually used to guess she was angry about more physical things, like feeling hungry or tired or in pain, and it's so wonderful to better understand what she needs from us.

We'll keep on working on feelings.  I want to thank you, Janey, for giving us that great sentence to let us know how you feel.  Whenever you are ready to tell us anything, we will be here to listen.

What I am tired of

I'm tired of being on edge 24 hours a day, 7 days a week.  I'm tired of never, ever being able to fully let my guard down.

I'm tired of cleaning up messes.  I'm tired of changing sheets, always having a huge pile of blankets waiting to be washed, tired of the type of pull-up disaster that still happens way too often.

I'm tired of screaming.  I'm tired of not knowing why the screaming is happening.

I'm tired of reading about possible causes of autism, which all seem designed to make me feel guilty, because it seems like every single one is something I've done or taken or not done or not taken.

I'm tired of rude people that stare.

I'm tired of worrying.  I'm tired of being scared that someone will hurt Janey when I'm not with her.  I'm tired of feeling panicked when Janey comes home from school upset, because I have no idea what might have happened to upset her.

I'm tired of the same episodes of the same TV shows, year after year after year.

I'm tired of not even counting on a full night's sleep.

I'm tired of dreading the future, especially the part of the future that will happen when I am dead and gone.

I'm tired of IEP meetings.

I'm tired of hearing about great new camps or lessons or programs or events that Janey can't be part of.

I'm tired of having to advocate.  I'm tired of having to figure out backdoor ways to get the services Janey needs.

I'm tired of feeling angry---angry at celebrities who have "cured" their kids, angry at politicians who don't even have the slightest idea what life with an autistic child is like, tired of feel-good stories about wonder dogs or magic trips to Mongolia or miracle breakthroughs.

I'm tired of being tired.  Physically tired, all the time, every single day.

Soon, very soon, I'll write about the joys of autism, or more specifically, the joy Janey brings me.  But today, I am tired.

Autism Mothers Aren't Chosen

If you are the mother of a child with autism, the news lately is a little tough to hear.  I don't want to and won't comment on the recent horrible happenings involving mothers of autistic children, because I am not in a position to do so.  And that is my point here.  Mothers of children with autism are not a homogeneous group.  We are not a single type.  We are not chosen.  We share something very major in our lives---we are the mothers (and fathers, but society and the news seems to focus on mothers) of a child with autism.  But aside from that, we are all very different people.  We react differently to many things in our life, including the stresses of raising our children.

When I read about the mothers that break, I feel like I am supposed to have some inside insight into them.  I don't, really.  It is like when I read about any crime or horrible event.  I figure there are so many factors involved that I simply can't know or understand that I really don't know what happened.

Right around the time Janey was diagnosed, I was on the jury for a high profile murder trial, of a foster mother whose foster child was killed.  We eventually found her guilty of manslaughter.  I can tell you that after hearing all the evidence, and after much, much thoughtful deliberation, the amazing people on that jury felt for everyone involved---most of all the child, of course, but also the foster mother.  She was not a demon.  She made extremely poor decisions, and she paid for them.  But the experience left me realizing that we usually have no idea what life others live.

The only autism mother I can truly speak for is myself.  And I can only speak for myself at the moment in time I'm in.  I know there have been moments of despair, and my thoughts at those moments always went to escape---my own escape.  I thought of getting in the car and driving away and never coming back.  I thought of escaping into death, my own death.  Those thoughts were fairly rare, but they happened.  What helped me out of those moments in the abyss---knowing I had a family who loved me, knowing that there is always a hope for a better tomorrow, and often---Janey herself.  That is the biggest one---how even after the toughest times, my delight in her can make me happy like nothing else.

Autism mothers aren't chosen.  They are parents.  The idea that somehow they are special, different, miracle workers---those are dangerous ideas.  They are dangerous because of the expectations they create.  IT IS NOT OUR JOB TO FIX OUR CHILDREN.  That thought is what I think causes more despair among parents of children like Janey than any other.  We all have read about amazingly devoted parents who "cure" their kids.  Maybe this has happened, once or twice in history.  But most of the time, the children that get "cured" would have done so anyway.  I truly believe this, with all my heart.  I don't talk about it a lot, because it is not my story to tell, but my older son could be the subject of one of those "cured" fables.  I didn't cure him.  I am not going to cure Janey.  It IS my job to do what is the job of any parent---to give her a good life as much as I can, to love her and cherish her, to feed her and clothe her and see that she gets an education.

When the world understands that autism mothers are not a special, exalted breed, but just parents who have been dealt a more challenging hand than most, I think society will be more inclined to help us.  When the world understands that autism is not some mystical, mysterious state of being, but is more like diabetes or cystic fibrosis or other childhood conditions---not the fault of a parent or a child, not something a parent or a child can cure, not something that makes a parent or child better or worse, but a condition that requires help and services to deal with, I hope that help will be provided.  It will not prevent all tragedies, even then, and that is because every person, every child, every situation is different.  Please remember that when you hear the news.

My own personal autism awareness wish list

Here it is, World Autism Awareness Day again.  I've been saying to myself what I say to myself every year on this date---I think I'm about as aware of autism as I can get.  However, I've been thinking about what I'd like others to know about autism.  Here's a list of the top four things I'd like the world in general to know.  It's my own personal list---I am sure that everyone with a life touched by autism has their own list, different in many ways, but I can only speak for myself.

Most autism you see portrayed in the media is high-functioning autism.

There is a huge, huge range of abilities and characteristics all lumped together as "autism".  In the past, there was actually a separate name for the highest end of autism, Aspergers Syndrome.  But the powers that be, for whatever reason, have now lumped that in with all the rest.  If you see Temple Grandin, or hear about Daryl Hannah, or even see the often hilarious Autistic Reporter on The Onion, you are seeing very, very high functioning autism.  On the other end, there are children and adults like Janey.  Janey is nine.  She is not toilet trained.  She cannot be left unsupervised for a minute.  She can talk a little, but mostly only in scripted "I want.." sentences or in repeated phrases from videos.  She screams, cries, injures herself and doesn't sleep regularly.  Academically, she functions about at a 2 year old level.  She is autism, as much as people with college degrees can be autism.

I am not looking for a cause of autism or a cure for autism.

There are many, many possible causes of autism.  Janey's autism could have been caused by any number of them.  In our daily life, it doesn't much matter what caused her to be autistic.  And in Janey's particular case, there is not going to be a cure.  I am not sure there ever is a cure for correctly diagnosed autism, but many disagree with me there, and that's fine.  However, I don't choose to pursue a cure for Janey.

Autism affects family life extremely severely.

If you've ever spent even an hour with a child with autism, especially low-functioning autism, you were probably exhausted after that hour.  Imagine that you have that child living in your house, every day, every night.  Imagine that you can never, ever count on a full night's sleep, that at any moment, your child might start screaming or crying or biting themselves or trying to bite you, and that there seems to be no reason for this behavior and no way to soothe them.  Imagine that you can never, ever count on going out in public as a family and having it go smoothly.  Imagine that even close friends who would do anything to help you have admitted they can't watch Janey, even for a few hours.  Imagine that you must sometimes make choices like whether to listen to a sibling tell you about their tough day or follow the rituals the autistic child demands, and if you pick the sibling, you know you'll be dealing with hours of screaming.  Imagine a life that autism touches every single second, every single aspect of.  That is family life with our particular brand of autism.

I love Janey more than I can possibly describe, and that guides all my decisions about her.

It is the most important thing in the world to me that Janey be loved, cared for and valued.  I make every decision about her life with that in mind.  For example, I am not sending her to summer school this year, because I am not comfortable with the program.  I need respite, but more than that, I need to know Janey is safe and loved, just as any parent has that need for their child.  In Janey's case, since she can't usefully tell me what happens when I'm not with her, I have to be ever-vigilant about who is caring for her when I am not there.  At this point, I can't compromise on this---I can't accept less when letting her out of my sight.  Maybe that is my biggest point.  There needs to be quality education, care and respite for children with autism, because they deserve it every bit as much as any child.  Without that, the burden on many families is near unbearable.

To all my friends, to all my readers, to everyone who has helped me through this life, and especially to Janey----Happy Autism Awareness Day!

The books I can't write

Once in a while, someone suggests to me that I write a book about Janey.  It's a flattering thing to hear, and I have considered it now and then.  The problem is, though, that books about autism, like books about other topics, seem to fall into a few categories, and Janey's story simply doesn't fit the categories.  In thinking about this today, I came up with these four types of autism books....

1.  "How I Cured My Child's Autism"  This is the happy ending type of book, a book that you could flip to the last chapter of and almost always find an account of the child going off to a new school, where no-one knows they ever were autistic, and them fitting in completely.  Happily Ever After.  The books starts with a few chapters of the horror of the early years, the shock of the diagnosis.  Then comes the decision to follow a certain course of treatment, chapters about pursing the treatment to the ends of the earth, the days it got discouraging, the day there was finally some kind of amazing breakthrough, and then, as times goes by, an autistic child turning into a "normal" child.

This is not going to happen to Janey.  I used to say, barring a miracle it's not going to happen, but truth is, I don't much believe in miracles.  It's not going to happen.  Janey will be autistic for good.  There isn't a cure out there that will fix her.  I could write this kind of book about my misdiagnosed older son, but I won't, because that's not a book about autism, it's a book about misdiagnosis.   Any book about Janey will not have the traditional autism cure ending, and that right there would cut into the interest the general public would have in the book.

2.  "How The Cruel System Failed My Child"  Not as common a category, but I've read a few.  This book is about terrible schools and uncaring professionals, mean therapists---it's about fighting the system that for some reason wants to not help the autistic child.  I can't write this book, because that's not my experience.  I've had incredible luck over the years with teachers, therapists and just about anyone who has worked with Janey.  They want to help her as much as I do.  I have rarely asked for something from the schools I haven't gotten, and the few times I haven't gotten something, I truly don't think it's because someone was being mean or had a plan to not care.  I think sometimes it's easier to frame the tough life that having an autistic child brings as being caused by outside forces, and to fight those outside forces, where at least you have a chance to "win", than to accept that a child is just plain who they are.  But I've been more lucky than most in Janey's education, and that alone cuts out this book possibility.

3.  "How The Medical Profession Somehow Caused Or Didn't Endorse a Cure for My Child's Autism"  This is a big one, the one about vaccines or mercury or dairy products or wheat or oxygen treatments or pollution or PCBs or high tension wires or any number of other things.  I'm not saying that these things never caused autism, or that diets or other medical cures never helped with autism, but that's not my story.  I don't know what caused Janey's autism.  I don't think it was any one thing.  I think it was genetics, a tough pregnancy, a tendency toward auto-immune problems and an off-shoot of my bad allergic reaction to Aldomet.  But I'm not sure of any of those, and if anything, there are too many possible reasons Janey might be autistic.  I don't have a burning desire to figure out what caused her autism, because I don't think it really matters right now.  So that book is out.

4.  "My Child's Autism Showed Me a Whole New Magical And Poetic Way to Look At Life"  This kind of book uses autism as a starting point, and branches into a beautiful world of discovery, opened up by freeing oneself to see the world through the amazing eyes of the mystically gifted autistic child.  The actual child might be mentioned now and then, but more of the book is poetry, or art, or reflections on the author's one fascinating life, or thoughts on how maybe the child is the one with the right attitude and the rest of us are the ones with the problem.  Well, I can't write this one at all.  I don't think anyone who spend much time with Janey could.  Life with Janey is not poetic.  It involves lots of things that don't lead themselves to creative, eye-opening dreamy interludes.  It involves changing a 9 year old's diaper, waking up 20 times a night to screaming, trying not to get in car accidents as Janey loses it in the car, watching Kipper until your eyes bleed, and getting up the next day and doing it all again.  There are wonderful moments with Janey, yes.  I love her beyond words, yes.  But it's doing a disservice to pretend her life is somehow a life we all should strive to live.  It's doing her a disservice most of all.

The book about Janey, the one I will probably never write, is full of uncertainties.  It's full of working for years for her to be able to write a J.  It's full of devoted people that non-the-less often become discouraged by the reality of Janey.  It has no shortage of theories about her autism, but no answers.  It has moments so beautiful they might make you cry, but also moments so discouraging they would be hard to read, to say nothing of write about.  It's the story of reality with Janey, one of many, many children on this earth that have autism, but also of her uniqueness, the beauty and the tragedy of her life.  It's a book without categories, and I don't feel equipped to do it the justice that Janey deserves.

The Ducks Going Barefoot

I've always been prone to feeling guilty about everything.  My father used to use a phrase about it, saying I'd feel guilty about the ducks going barefoot.  And that's about true.  I feel guilty about things I have no control at all over, about things that I have no need to feel guilty about.  So it stands to reason I almost always feel guilty about some aspects of parenting, and, especially, parenting Janey.

This is coming up in my mind today because it's the first day of after-school.  After-school runs at Janey's school from 3:15, when school gets out, to 5:30.  We always pick her up at 5, though.  Last year, Janey wen to after school every day, and it was wonderful.  She enjoyed it most of the time, and I got a lot more rest and a lot more time to work and do housework and just recover.  I signed her up again this year for every day, and this year, Tony's changing his schedule a little so he can be home in time to take the car and pick her up, which is even better---I only have to do the tough city drive to and from her school once a day.  So why am I feeling so guilty?

Well, I guess it's because I know at least at the start of the year, the school day is long for Janey, and after school will make it longer.  I know she sometimes cries at the end of the day, looking for me.  And I feel in some very deep part of myself that if she is crying, she should be with me.  I was thinking about that this morning, and trying to understand that.  The truth is, I am not much better at keeping her happy than anyone else she trusts and loves.  In fact, I'd say she's usually happier at school than home, as there is more entertainment, more people to take a turn with her, more other kids, a big sensory room---she likes school a lot.  But if I think of her crying at after school and me not being there, I feel hugely guilty anyway.  Maybe it's because I feel like it imposes on people, it makes them have to take care of her when it should be my job.  Maybe it's because with a "normal" kid, a parent probably would be able to comfort her in ways others can't.  Or maybe it's just because crying hits me very hard.

But I've been thinking a lot of something someone said to me, on my Facebook page for this blog.  I wish I could remember who, so I could give them credit!  They said to keep in mind how airlines always tell parents to put oxygen on themselves first, so they can then better assist their children.  I try hard to internalize that.  I do need to stay strong for Janey.  I go in a few days to another rheumatologist, to try to get a handle on whatever it is that I have, but whatever it is, it makes me get very, very exhausted by midafternoon.  I need to rest then.  And of course, like my guilt about the poor little duckies without footwear, I feel guilty about needing the rest, but I do need it, and I will not be any good to Janey if my health gets worse.

I think many parents of autistic kids struggle with guilt.  We see people out there who seem to be doing so much more for their kids---the warrior parents, the totally accepting parents, the 100 hours of week of intervention parents---all of them.  It doesn't really matter that we probably know deep in our hearts that none of these stereotypes completely exist in real life, that many of us are just getting through the days with any crutches we can gather.  We know the autism isn't our fault, and most of us probably know that we are not going to be able to cure it.  We know we've been dealt a pretty tough hand, and we know we love our kids fiercely, but we sometimes need help, rest, respite.  We know all that, but still---we feel guilty.  And we feel guilty about feeling guilty.  I'm going try, just try, to not think about shoeless ducks, at least sometimes.

The credit and the blame

In the bad old days, autism was thought to be caused by "refrigerator mothers", mothers who hadn't really wanted their kids to start with and therefore showed them little human emotion.  I would say almost no-one thinks that any more, thankfully.  Although I think most autism mothers, like most mothers in general, search their memories of their pregnancy and birth and their child's early days, trying to figure out WHY, most of us do know that our child's autism is not our fault.  We didn't cause it.  We might not know what caused it, but it wasn't something we did deliberately or even indirectly.  We don't take the blame, at least on our better days.

I'm wondering, then, why so many mothers feel it is there job to FIX the autism.  We can accept we didn't cause it, that nothing we did made our kids they way they are.  The inverse of that is that although most mothers tried always to do everything right, they were powerless to prevent autism.  However, although we can sort of accept that powerlessness and blamelessness, we can't accept we don't have the power to cure autism.  We feel, somehow, that if we do everything right, if we try just the right combination of therapies or diets or experiences or schools or approaches or medication or supplements or so on, we will fix the autism. We believe in people who say they did just that---people who write books about the miracle cures for their children.  We give ourselves in our minds the power, if we just try hard enough, to fix what has happened.

I am trying hard to not do this.  I'm trying to be consistent.  I know I didn't cause Janey's autism.  I don't know what did cause it.  And because I didn't have the power to keep her from becoming autistic, I also want to accept I don't have the power to overcome the autism.  That in no way means I'm not going to keep working to make her life better, just as when I was pregnant or when she was a baby, I did everything I could to give her the best start I could.

This is where my older son comes in.  He was also at one point, when he was very young, diagnosed with autism.  That was changed within a few years to an Aspergers diagnosis.  When he was 8, testing showed he no longer fell into the autism spectrum.  When he was 12, we stopped having him on an IEP at school.  Last week, he graduated from high school as valedictorian of his class.  He heads to Brandeis in the fall.  This is where I have to practice what I preach.  I don't take the credit for his "recovery"  I think he was misdiagnosed, but even if that wasn't the case, it wasn't anything I did or didn't do that "fixed" him.  He did that himself.  It was what was meant to be.  I am proud of him, but I in no way at all take credit for him.  If I did, it would follow I should take blame for Janey not being cured, being in fact very much the same as she was when she was diagnosed 5 years ago.

I believe in autism acceptance, mostly.  And I think that needs to mean an absence of credit or blame.  Janey is who she is.  She is a full, complete, complex person just as she is.  Talking about credit or blame makes her sound like a project, not a person.  The same holds true with William, my older son.  As tempting as it can be to feel we can really change our children, I truly believe we can't.  We can soften their path, we can give them opportunities to shine in their areas of talent or interest, we can be there when they fall or need our help, but they are people on their own.  I'm not quite there yet, in fully believing that, but I am working toward it.

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.

My autism resolutions for 2013

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

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

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

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

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

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

Autism Awareness Day

It's Autism Awareness Day, and I am thinking about how little awareness really does for anyone. It's great to be aware autism exists, but hey, I'm aware lots of things exist, and that doesn't do a bit of good to people dealing with them. Fire exists, cancer exists, poisonous snakes exist, floods exist....and so on. What I wish---there was a Help People Dealing with Autism Day. Here's some ideas....

1. Offer to watch a child with autism. It's not as hard as you think. Their parents do it almost every hour of the day. Yes, they might cry. Yes, they might show strange behaviors. Yes, it might not be all fun and games. But it might be---our kids can be a lot of fun sometimes. And even if it isn't, think about how much just a few hours of freedom means to the parents. It might save a marriage or save someone's sanity.

2. Really get to know a child with autism. If you are around them, and I'm talking here not babysitting, but with the parents around, sit down with them. Play with them. Don't do this trying to teach them things, or quizzing them to see if they know things. Follow THEIR lead. If they want to hear the same book 50 times, read it to them 50 times. You aren't their therapist or teacher---you can just be their friend.

3. Do something for the sibling of a child with autism. They, like the parents, live with autism all the time, but unlike the parents, they didn't choose to have the child. They love their siblings with all their might, but it's not an easy life for them either.

4. Ask a parents of an autistic child what supplies/books/materials/treats their child might really like. Little things can be so helpful---you don't have to spend much to get something that might be a huge treat for the child, if it's something they are really into.

5. Support public funds being spent on SUPPORT for autistic people---after school funds, recreational programs, housing for adults, respite care and much more.

6. Say something nice about the autistic child. Don't act like they are a tragedy. They aren't. Every parent likes to hear nice things about their kids.

7. Don't,don't, don't,don't, don't offer us information about a "cure". You are not telling us anything we haven't already thought about, and it's hurtful to many of us.

8. Be a friend to the parent---just a regular old friend. Nothing refreshes a parent like doing something fun with a friend.

9. Include the child in events like birthdays or other parties, but understand if the parent decides it won't work out. Most of us parents are very sensitive to how a child will really do at various events, and we will always appreciate the invitation, but we might not accept.

10. Don't assume our child will have special abilities, or that our child is a genius inside, or the child is slow, or anything about the child's abilities. Ask the parents if you are close with them. All kids have special abilities in their own way, but most children with autism are developmentally delayed. We parents know that. We can offer the best assessment of what our child is capable of.

11. If you see a child in public that you think is autistic, and they are having a meltdown, don't stare, or comment, or look disapproving. If there is a simple way you can help, you can try to, or you can just ignore the whole scene, or you can give the parent a sympathetic smile. We've all been there, even with our "normal" kids.

12. Know how any help at all is EXTREMELY appreciated by the parents. You can make a huge difference in their life by helping.

And if you got this far, thanks for caring enough to read this!