Why We Don't and Why We Should

Reasons why we, the parents of children with low-functioning autism, don't write or talk as often as we might about how tough our lives can be....

Because we don't want to hurt those who share the "autism" part of the diagnosis but not the "low-functioning" part.

Because we know it's natural for people to only have a limited capacity to hear about how hard things can be before they get tired of hearing it.

Because we are too tired to talk about anything.

Because we know it's more politically correct to emphasize the positive.

Because sometimes we are so used to it that it doesn't seem newsworthy.

Because the other people living this life already know how it is, and we think people not living the life generally will never quite get it anyway.

Because we think if we don't put the worst of it into words, it won't quite be as true.

Because we have been taught there is no point in complaining about things that can't be changed.

Because we don't want to hear about "solutions" that don't exist or don't work.

Because we are tired of hearing about all that Temple Grandin's mother did.

Because we feel secretly like we should be doing a better job, and if we were, it wouldn't be so hard.

Because we love our kids so much that it's hard to believe, and admitting how hard our lives are with those same kids feels wrong.

Reasons why we should break the silence and talk and write and shout about it...

Because otherwise, the world assumes autism means Temple Grandin and math geniuses and slightly quirky girls who don't get diagnosed until high school because it's so hard to tell they are actually autistic.

Because maybe, just maybe, if people knew the truth, they would want some of their tax dollars to go toward helping us.

Because when our kids melt down in public, it would help if people didn't assume we were bad parents or they were bad kids.

Because most people could handle the truth.

Because our kids deserve to be written about, to be seen, to be known, as much as all the other kids on earth.

Because of books like the one I read about girls with autism with the line I will never forget "Girls with autism have a very bright future", and the chapter of advice about when our girls get to college.

Because not talking about something means it's an unspeakable tragedy, and our kids' lives are not an unspeakable tragedy.

Because the school system needs to figure out what to do with kids who have had many years of academics and have not learned anything academic.

Because we love our kids so much that we can tell the truth about how our lives truly are in a way that still lets that love shine through.

Because try as we might not to, someday we parents are going to die, and that is the scariest part of all, and it might be less scary if society actually knew our kids, our kids who will someday be adults and will need help that does not yet exist.

Good Friday, an IEP meeting and telling Janey a story

Janey had Good Friday off from school.  We never did, growing up in Maine, and it catches me a little by surprise every year.  

Days like that, single days off that aren't federal holidays so Tony has to work, are hard days with Janey.  This year, though, I realized I was dreading the day less than I had in the past.  It's not that Janey has been in a particularly good mood.  There's been a fair amount of screaming and arm biting lately, for causes unknown.  But I don't feel in despair when this happens as often any more.  I think I finally feel confident that if I work at it, I can calm Janey down, at least for a while.  That's a combination of lots of things, I'm sure---her maturing, the school's hard work, Tony and me gradually becoming Janey-trained---lots of stuff.  Whatever it is, I am glad of it.

The day before Good Friday was Janey's IEP meeting.  I've been to a lot of IEP meetings in my life, more than most people, I'd say.  Every time, I leave feeling grateful for all the people on Janey's team.  They seem to get her, to love her, to truly want her to succeed...they are good people.  

For the first time, though, I'm going to have to probably reject a part of the IEP.  At the start of the meeting, as always, I was asked what my particular concerns about Janey are right now.  I said what's been on my mind lately---that I want a full court press to help Janey communicate, to be able to tell us what is on her mind, particularly in the areas of emotions and health.  I want her to be able to express why she gets so upset, and to tell us if she is in pain.  These are not idle wishes, they are possibly life and death things---thinking about Janey's appendix rupture, and thinking about the levels that Janey's furies and tantrums can reach.  The speech therapist, for various reasons, proposed lowering the amount of speech therapy Janey gets.  No matter how I look at it, I can't see this as a good idea.  She said she felt this would give Janey more time in the classroom to learn functional life skills.  But I feel that we can teach her skills at home much more than we can give her speech therapy at home.  So, I said during the meeting that I will be opposed to the lowering of that service, and everyone was very kind and understanding (and although they can't say so, and didn't say so, I think there was some agreement in the room with my feelings)

Keeping Janey happy on Good Friday, I kept with the theme of trying to help her express herself. After one outburst, as I cuddled Janey to calm her down, I told her a little story---an idea prompted at the meeting by everyone telling me how well Janey responds to being read to (which I wish she did at home!)  I said something like "Once there was a girl named Janey.  Sometimes she got VERY angry and screamed a lot, and bit herself.  Her mama and daddy didn't know why she was so angry, because Janey didn't tell them with words.  Her mama and daddy can't see inside Janey's head.  They don't know what she is thinking.  So when she doesn't say words with her mouth, they don't know what's wrong.  The end"

Janey's reaction was---wow.  I didn't expect it.  She looked at me with a look that said "You don't mean it?  You really can't tell what I am thinking?  You don't know?"  Of course right there, I am saying I DID know what she was thinking, and I don't.  I'm not sure that is what she was thinking.  But the look she gave me was quite something.  It was a look of sudden realization.  I wonder if all these years, Janey just assumed I COULD know what she was thinking and feeling.  I don't expect any miracles from her possible realization that I can't.  But it's a message I'm going to keep sending.

I included the part about words being said by mouth as I think perhaps Janey says words in her head a lot, and doesn't realize they aren't audible to me that way.  Often I'll ask her something, and she looks at me like "why are you asking that?"  To her, what she thinks and what she says out loud might seem the same.

There are areas where I am ready to stop trying.  The OT at the meeting said she isn't really any longer trying to get Janey to write.  They are working instead on stamping her name.  I am okay with that.  Janey has never, ever shown the slightest interest in or skill with using writing utensils.  Her IEP doesn't include any work on learning letters.  That is fine too.  I don't think Janey is going to learn to read, at least not in a traditional way, beyond what I think she can already read.  But speech?  I think, or I hope, that Janey will learn to express herself with more ease.  Perhaps I'm wrong.  Janey's speech comes and goes, but in reality, she has never gotten back to her two year old talking level.  But I have to hold onto that hope, and try very hard to figure out how to help Janey tell us what we need to know.

Happy Easter to all of you who celebrate it!

Being Janey's voice, without apologies

Usually, I deal with viral type controversies about autism issues by ignoring them.  I've always felt that you can't get insulted by things you don't read or hear about, so I usually avoid reading a lot online about autism and autism parenting, which is kind of ironic seeing as I write a blog about those very issues.  But I think of this blog as being more about Janey, a specific girl with autism, than about autism in general.  I love it when it's helpful to others, and I love extremely much hearing from other mothers, but I don't try to speak for the community.  I couldn't do that.

However, I do try to speak for Janey, and I've been surprised that lately, that seems controversial.  It seems like it started with a post on a blog called The Mighty, which (like most special needs blogs except those of friends!) I haven't read.  Someone posted something called "Meltdown Bingo".  It wasn't in the best of taste, and if I had seen it, I think I would have not liked it that much, but then would have moved on.  It takes a lot of energy to get outraged, so I save it for extreme things.  But it seemed to open up a big debate, in which a lot of people said things like "nothing about us without us", meaning nobody should write about autism unless they are the person with autism.

I want to say here---if I've ever insulted anyone with autism by writing about Janey, it was absolutely never my intention.  I would hate to think that I had.  But with that being said, I don't agree that I shouldn't write about her.  I'm pretty sure not everyone with autism would agree I shouldn't write about her, either.  People with autism don't speak as a group.  Some of them, like Janey, can't really speak for themselves at all.  And that is why, of course, I try to speak for her.

It is so confusing to me why someone would say that if Janey can't write a blog herself, she shouldn't be written about.  That just seems---well, mean.  Does that mean that nothing should ever be written except in the first person?  Does it mean that everyone in the world who can't write should never be written about?  Or is this just some special case for autism?  If so, why just autism?  Would it be okay to write about Janey if she had some other issue?  I'm asking these questions theoretically, of course, as I figure if you are reading this blog, you are probably okay with me writing about Janey, but I really do wonder what the reasoning is.

Janey can talk a little.  She can't read, or write, or generally speak in complete sentences.  She is very developmentally delayed---probably functioning at about a two year old level in most ways.  Barring miracles, she will never write a blog.  She will never give speeches, she will never write a book, she will never self-advocate.  But her life is valuable, and her experiences are meaningful.  I share them in many ways because she can't.  I don't write about my sons very much.  They are completely capable of writing about themselves if they want to, and I fully agree that I shouldn't write about them.  But Janey? That is very, very different.

I wonder sometimes if the reason people don't want parents to speak for their kids like Janey with autism is because Janey is not the face of autism that many want put forward.  She is not an inspiring story in a traditional way.  She doesn't have special abilities, she has not responded to assisted communication, she is not making progress in any significant way academically.  But she is a face of autism, just as much as the college graduates with autism or the kids with autism who use letterboards to write books.  She is unique, fascinating, beautiful, interesting---she is a person worth knowing despite how hugely challenging her behaviors and limitations are to us and I'm sure even more to her.  I will be her voice as long as I am able.  She's worth it.

Should I even be writing about Janey?

Lately, I've read a few blog posts and articles that question the whole idea of sharing thoughts and stories about parenting an autistic child.  The gist of them is that it's not our story to tell as a parent---that someday, Janey may want to tell her own story and that she might not appreciate what I've written about her childhood being out there in internet-land.  It's a very valid thought to consider, and I have been thinking about it for a few weeks.  I've concluded that I think it IS valid for me to write about her, and I'll give my thoughts and reasons.

The first thought I had, to be honest, was that Janey will never be able to tell her own story.  I hope I am wrong there.  I hope that Janey does learn to read, to write, to be able to tell me her take on her life.  I hope that extremely much.  But I don't think she will.  I know there are non-verbal people with autism who do communicate very well, through writing.  But I don't think Janey will be one of them.  It's not that I don't think she would ever be capable of that, although I do have my doubts about that.  It's more that she is not very focused on written or visual communication.  She's an auditory person.  She talks probably more than would be expected for someone at her level of functioning in other areas.  She listens pretty well.  She seems to have vast, vast stores of auditory memory---songs, lines of conversation, full movies.  But she has resisted most any attempts to convert this knowledge into written form, or to use a visual communication method.  So maybe she'll dictate her story?  I don't think so.  I haven't ever really heard of an autistic person who was minimally verbal in a truly communicative way at Janey's age who then became verbal in a way that could tell stories of the past, or give perspective into what is inside her head.  I hope I am wrong there, but I honestly don't see Janey being able to tell the world her own story.

Next, I had to consider WHY I write about Janey.  There are two major reasons.  One is to keep myself sane.  Writing is my release, my way to getting through the days, of working through my own thoughts, of being able to face the future.  Quite selfishly, I need to write.  Less selfishly, I need to write to be able to be strong for Janey, and for the rest of my family.  I need to know I can sit down here at the computer and write about my life and Janey's life.  Without that, I think I might give up.  That's the ugly truth.  The other reason I write is to provide support to others with children like Janey.  I think over the years, I've done that some.  I've had people tell me they feel far less alone after reading my blog.  I've had a few people tell me that I helped them go on after tough times.  That means the world to me.  I don't advertise my blog much, and I'm not part of the larger blogging world.  I am not good at that kind of networking.  But somehow, over the years, people have found this blog and have told me it's been helpful to them, and that is absolutely one of the things I'm proudest of in my life.

And so here we get a bit of a vicious circle.  I write about Janey so I can continue to parent her---so I can have the strength I need to be the best parent I have to her.  I write also to hopefully, in some small way, give strength to other parents.  Raising a child with autism is not easy.  I don't think even the most positive parents would say it is.  And raising a child to reach their maximum potential, to maybe someday be ABLE to tell their own stories, is even harder.  We need all the help we can get.  We need support from others that truly understand.  We need to know there's an outlet for all the feelings that this tough parenting gig brings up---sadness, frustration, sometimes anger, sometimes despair and sometimes, yes, extreme pride and happiness.  We need that connection.  Without, I know I couldn't go on.  So in order to give Janey the best chance at a full life, and the little bit of a chance she might someday be able to tell her side of the story, I NEED to tell mine.

We all make mistakes as parents.  If anyone thinks they don't, they are probably making more mistakes than most.  So, if writing this blog is a mistake I'm making, I'll take that chance.  I'll take the chance that Janey will come back some day and hate me for writing it.  If that happens, I will accept that, because writing it would have helped me help her get to the point where she could express that.  I'll keep writing in the hopes one day Janey can tell me if I did the right thing or not.

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.

Progress Despite It All

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

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

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

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

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

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

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

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

Why I blog

If you search for blogs about autism, you find a very lot of them.  However, what you don't seem to find is too many about truly low-functioning autism.  There are some, and of course kids with all kinds of autism do have traits in common, and there is no real set in stone dividing line between high, medium and low functioning autism.  But the fact is I haven't found a lot of blogs about kids that function at Janey's level.  And I think I know why, at least partly.  With LFA, the narrative can get stalled.  What Janey is doing now is very similar in a lot of ways to what Janey was doing a year ago, or two years ago.  She doesn't make huge breakthroughs.  And because of her LFA, we don't do a lot of other exciting things that would spice up a blog, like taking big trips or outings.  We aren't following a radical new treatment regiment.  Janey is not suddenly picking up her iPad and writing books, and I doubt she ever will, although of course it would be wonderful.  Janey is Janey, and that's what I write about.  So why?

Well, for three reasons. 

The first is that writing is my therapy.  I'd write about Janey even if no-one was ever going to read it.  That is evidenced in  the 20 or so diaries I have around the house, which I mostly wrote in high school and college, but some as adults.  I wrote for myself, because writing is how I process things.  The day Janey was diagnosed, I started this blog, and I think I did it in blog online form mostly because I can't even read my own handwriting any more, and I wanted to type a diary.  I'd heard about blogging, and I figured I'd try it.  I didn't tell much of anyone about the blog, and I didn't promote it except in very small ways.  Gradually, it started to get read, and now, it gets read a good deal, which is amazing and wonderful to me.  But I still write in it much for myself.  When I have a tough day with Janey, or a wonderful day, my first impulse is to write about it.  

The second reason---to give Janey a voice.  I hope someday Janey will have her own voice.  I certainly follow with interest news about other people with LFA finding a way to communicate.  But in all honestly, I don't think there is a huge hidden store of deep insights that will someday make up a beautifully written book inside Janey's head.  And my point here is that that doesn't make her life, her ideas, her communication, her voice ANY less valuable.  I don't want to give her a voice to prove that she somehow has hidden stores of miraculous insights.  I want to give her a voice in a way because she doesn't---because there are lots of kids and adults like Janey out there, and their lives are valid.  They have lives that people should be able to hear about.  People can learn from Janey.  They can get insights from stories about her life into what it's like to live with a disability that affects the mind, the emotions, the ability to learn.  They can see that she can be a delight, can be amazing, just by being her.  Hopefully, people will realize that a person's worth is not measured by IQ or future earning potential, but that we all have a value.

The third reason, and probably the most important---to support other parents, and to get support from them.  I don't know how I would have lived through the last 5 years had I not met other parents with girls like Janey, had I not realized that I wasn't the only one with a child like her, had I not gotten the hope that comes from hearing there is indeed a bit of light at the end of the tunnel.  I know there are girls (and boys, but there is less out there as a support for girl) being diagnosed with autism every day, and not all of them are like one misguided book about girls on the spectrum made them seem, very verbal with unlimited futures.  The media tends to focus on girls with autism that are misdiagnosed because they seem so "normal".  But I know there are a lot of girls like Janey, that will probably never pass for what society calls normal.  And there are a lot of parents that love those girls, but are starting out on a tough journey, one filled with crying and screaming and sleepless nights and frustration.  I want to tell them I know how it feels, and I also want to give them hope---not false hope that says "one day your child will be cured, if you do everything right!" but hope that you will still have wonderful moments with your girl, that she will bring you happiness, that one day you will have a time when you think "I wouldn't want her to be anyone else"  And then she will scream all night and you will lose \that feeling for a bit, but it will come back, here and there, and that's enough.  If I can give one parent that message when they need to hear it, that's enough too.

The Grocery List

Tony told Janey this afternoon he was going to take her to the grocery store.  She was quite happy, as she loves going to the store.  A few minutes later, she brought us the little notepad Tony uses for grocery lists.  We told her that was great---she had made the connection between the list and shopping.  But then she found a pen and grabbed the pad, and looked like she was going to try writing on it.  That was unusual---at home anyway, she has little interest in drawing or scribbling or any pencil to paper activities.  Then she stopped, put down the pad and started to scream.  She'd been having a banner weekend, and had been cheery for days, so we were startled.  She yelled for a bit, and then said "GREEN CANDY!"  Green candies are those striped round mint hard candies---she loves those.  And we figured it out, or we think we did.  She wanted to put "green candy" on the list.  Tony right away wrote it on the list, and drew a little picture next to the words, and showed it to her, and she seemed a bit calmed down.

The whole episode brought up a lot of questions and emotions in me.  First, did we interpret correctly?  Figuring out what Janey is trying to say is often a puzzle.  Did she just say green candy because she was trying to comfort herself when she was upset, maybe because she wasn't on the way to the store yet?  I guess I'm a natural skeptic, but I often default to assuming Janey isn't meaning to convey the more complex meanings that some of her actions could be interpreted as.  But assuming she was wanting to write green candy on the list---well, that's a little heartbreaking.  It would mark the first time we were aware of her being aware of her own disabilities.  She knew that people can write things down---the kids in her class write all the time.  And she knew that Tony wrote things on that paper to remind him to get them at the store.  So she got the notepad and then, boom, it hit her.  She couldn't write.  She had no idea how to put green candy on the list.  And that would be a sad moment for anyone.

Or I could do as I would like to do more often---see this as an opening, see it as a good thing.  She was making a cognitive breakthrough---getting what writing is all about.  That's a much cheerier way to look at it.   But it would be more cheery if I felt she was within any kind of reach of being able to write.  She has very few even prewriting skills.  Once in a while, she can make a J, or try at a circle or line, but that has taken years and years to get to, and it's pretty hit or miss.  I should, if I were being less of a negative person, think about technology---how she could use her iPad to make a list, how we could take a picture of the green candies and use them to start teaching more more iPad communication.  But she has shown huge resistance to any attempts at that.  Her calm, happy state lately has come about partly because of my realization about how much she gets stressed by my attempts to teach her---I'm going to write about that soon.  She is much more willing to learn at school, but even there, it's slow, slow going.

So I'll say honestly my main feeling today at her frustration was sadness, because she was sad, and because it seemed like she realized what she couldn't do.  Tony and I talked about how we had almost hoped that day would never come---the day when she realized she was different than other kids, and couldn't do the things other kids can do.  And it might not ever come fully, but today felt like a little bit of that knowledge had hit her, and it's hard to for me to see that, and I am sure, harder for Janey to feel it.

One Man Show

I wish I could remember who is was, but someone at Janey's IEP meeting said that when Janey is not in a responding mood, working with her is like a one man show.  That was such a great line to describe how it can feel when you don't get any responses at all from her!  When Janey gets in that kind of mood, the completely non-responding mood, you can start to feel like a clown or magician or speech-giver working in front of a totally quiet audience.  You have no way of knowing if she's taking in any of what you say.  You can pull out all the stops, do everything she usually likes, and she just looks at you blankly.  That is one of the most frustrating of the states Janey gets into.

It was making me think about the many, many different modes Janey has.  That was a huge theme at her meeting---how inconsistent she is.  A lot of education for special needs is based on not moving on until the child shows competence at a certain level.  With Janey, one day she can blow you away with how well she knows a subject, while the next you'd think she didn't know a thing about it.  It is as extreme as what surprised me most at the meeting---that when Janey is in exactly the right mood, she can write her name "Jane", and in fairly good printing!  I was shocked by that.  On other days, she can't even seem to hold a pencil.

Janey's modes seem to come in groups.  For example, there's the talkative excitable mode.  That is when she seems almost manic---talking a lot but also very, very wild, sleepless, running around, reciting phrases.  Then there's the talkative relaxed mode, which is probably my favorite---when Janey is happy but not wild and talking a lot more than usual.  With the sad moods, there's loud sad, where she screams all day, and soft sad, where she is just not responsive, where she wants to be alone and sleep.  There's cheerful and cooperative, and there's cheerful and "Dennis-the-Menace"  Cheerful and cooperative might not involve much talking, but she will do as you suggest, and will do things like putting on her shoes when we say we say we are going someplace.  Cheerful and Menace is when she pours out bottles of soda or dishwashing liquid, where she runs away from us dangerously but laughing.  There's more moods than that, but you get the picture.

I want to think Janey can always absorb what is going on around, even when she appears to not be.  I've read about a few kids with autism that suddenly in their teens were able to communicate much better than in the past, and they said one of the main things they wanted people to know was that they were understanding what was being said even if they couldn't respond.  So even when Janey is in one-man-show mode, I am trying more lately to explain things to her, to tell her what noises are that she might be hearing, to read books to her, to take care not to say things around her that might upset her.  It can't hurt.

I worry a little about Janey getting bored, if she really can understand much more than she can demonstrate.  What if she can already read, at times, and we are over and over teaching her her letters?  What if she gets everything that is being said to her, and is sick of hearing my voice telling her the same lessons over and over?  But I think it's more likely that when she's in some of her modes, she truly doesn't know the same things she does when she's in a different mode.  Or more---she can't access the knowledge.  That part of her brain library is temporarily locked up.

I think if science could figure out this---why kids with autism can't always access what they know---it would be a huge stride forward in helping them learn.  I hope it's being studied, somewhere.

"I'm just here for the Yo Gabba Gabba!"

One of the interesting parts of having a blog is being able to see stats on it.  I try not to get hung up on them.  I don't really write this blog to get stats, or to count up how many followers I have, or so on.  Mostly, I write it because I have to---because when I am overwhelmed with the life of a mother of a child with autism, I have to write.  I've always reacted to life's tougher moments that way, which is why high school required about 10 diaries worth of writing for me, none of which I hope anyone ever reads, unless you are very interested in hearing about what boys talked to me in study hall or on the bus, with detailed analysis of what they were wearing and what they REALLY were saying between the lines and what a nasty person the new girl they are going out with is...you get the picture.  I write because I am compelled to write.

Lately, however, in looking at the stats for this blog, I see a huge amount of new people looking at it, and almost all of them are here because of a post I wrote about Yo Gabba Gabba, in which I included some pictures.  I guess some search engine directs people looking for Yo Gabba Gabba information to here.  I wonder if they are kind of disappointed by the extreme lack of solid info on DJ Lance Rock and the crew once they get here.  If you are one of those readers, I wanted to just say "hi" to you, and to say---stick around and read a little about autism, if you wish.

You might be saying now "No, sister, I have no interest in autism.  My kid is fine.  Maybe a little seriously into the whole gang of monsters on Yo Gabba, but no autistic!"  And I say---I know.  I have some non-autistic kids myself.  But chances are, whether you have a child with autism or not, if the current statistics don't lie, you are going to be encountering some kids with autism along the way.  They maybe be included in your child's class, or they might be in a special class at their school.  You might see them at the playground, or at the beach, or on a bus.  You might have one as a niece or nephew, or the child of a friend.  But unless you live in a world very unlike mine, you will intersect at some point with autism.  And you might want to learn more about it.  It's a pretty interesting world, if I might say so.  It's also a tough world.  Maybe that glazed-eyed woman in your office is dealing with an autistic child.  Maybe that kid at the grocery store throwing a tantrum is a poster child for the autistic spectrum.  Maybe the boy in the class your daughter is telling you about, the one that only wants to talk about bridges or Thomas the Tank Engine or flags of the nations, maybe they are autistic.  They are out there everyplace!

So, if you happened on this blog but you don't have a child with autism, welcome!  Before I had a child with autism, I read a lot about it, just because it was interesting to me.  The reality of autism is not quite as interesting as reading about it was, but I understand if you are just curious, if you just want to glimpse another way of thinking.  And if you learn a little about what the autistic world is like, all the better!

J is for Janey

This is a picture of Janey's Mother's Day letter to me from school. Her special ed teacher told me this morning that she gave Janey choices in writing it for her, like asking her "Do you like listening to music with Mama or cooking with Mama?" and Janey answered her right away and nice and loudly and clearly, not whispering as she sometimes does lately. That was special enough to hear, but the "J" signature was a wonderful, wonderful surprise for me. I burst into tears of happiness when I saw it. I knew they had been working with Janey on writing a J as a signature, but to actually see it there---wow. There's something about it that is very symbolically special to me. It's like Janey saying "I am here! I did this!" I know I'll treasure that letter forever. Thank you, Jen and Christine!

Earlier in the day, Janey's class had a publishing party, where kids present their writing. It was done this year as a movie, which was very neat to see. It's amazing what kids accomplish during 1st grade. They go in not knowing how to read, and come out able to read and write. Of course, not Janey, but for some reason today, although I braced myself for it to bother me to see, it didn't at all. Janey was in the movie, and she did her best. She finished sentences about what she likes to do. All the kids did their best, and they all were amazing.

The best part of the movie was at the end. The whole class was dancing in a circle. Janey was right in there with them. She wasn't any different than any of the other kids, except for being (in my biased eyes, admittedly!) the best dancer. Then there was a shot of two other girls and her dancing. She was so, so happy, and the other girls looked happy to be with her. Janey was in her element---music and moving around. Those dancing scenes were inclusion at its best. Tony took a movie of the movie, and I will love seeing that scene for the rest of my life---Janey dancing with joy, part of the group but also her own amazing self.

Not all depressing

This entry is for my son Freddy. He recently read a lot of this blog, and had two main comments---"It's all about autism!" and "It's very depressing!". Well, I am not going to do much about the first one---it's an autism blog, not a diary, and besides, all the topics that fill my high school and college diaries are kind of useless when you've been married a long time----boys I like, boys other girls like, girls I hate because boys I like like them instead of me, boys I used to like but now hate but actually secretly still like----you get the picture. No longer appropriate. But I can try to temper the depressive nature of my writing a little. So here's some good tidbits followed by depressing tidbits, and a promise to end on a good one!

Good----Janey is singing more again. The school reported she learned a new song one day and sang it all day, and she is singing songs she heard a long, long time ago back---"Mr. Lonely", "The Pokemon Theme", "Always Look on the Bright Side of Life", "Who Let the Dogs Out?"---she might not have perfect taste, but she has perfect song recall.

Depressing----I am tired of the smell of urine. Janey is wearing underwear most of the time, not because she is trained, but because she only pees 1-2 times a day, and when she does, it soaks through any pull-up type diaper known to man, so underwear is cheaper and more comfortable for her. But every laundry load reeks of urine.

Good---I am feeling grateful for Janey being able to jump, skip, run, climb and overall be quite fit physically. She didn't walk until she was two, and there was a day we didn't know if she'd ever walk. I need to always remember how great it is that she can.

Depressing---Janey doesn't seem to be greeting people or saying hi to them or their names as much as she was at the beginning of the school year. For a while, I didn't have to be her voice when people said "hi". She seems back in her own world a bit more of the time.

Good---Janey eats so well! We went to a Korean buffet, and the server commented on how amazing it was that Janey ate things almost no kids her age will eat---lots of onions, carrots, spicy meat, lettuce, seafood---pretty much everything. She goes crazy at Indian buffets, too. I don't worry about her diet, and that was not the case with her brothers.

Depressing---Progress reports from school about her academics are so nice and cheerful, but the actual accomplishments don't change from year to year---Janey knows the letter A sometimes, can kind of trace circles and write lines, can count but not actually count things, can sometimes tell what her name is if she has two choices and one of them is a name that doesn't start with J---all the same from year to year pretty much, not for lack of good teaching or therapy, but because it just seems very hard for her to learn. I especially don't understand why she has so much trouble drawing or writing. She is good with her hands, goodness knows---she can open anything she wants opened---but she can't seem to write with a pencil well at all.

Good---Janey is happy much more of the time than a year ago. She is a cheerful girl. This week her older brother William is away, so I have to wake her up when I take Freddy to his bus and put her in the car half asleep. She never cries or complains as I bet a lot of kids would---she accepts the change in routine with good nature. Little things delight her, and she just seems to enjoy life much more of the time than she did.

Depressing---sometimes Janey laughs for hours for no reason. That bothers me almost more than the crying. It seems more insane, to be frank. It's like there's a joke she only can hear.

Good---Janey is noticing the cats for about the first time ever, and actually played a little with Polly, pulling a string for her.

Depressing---Janey rarely has any interest in toys, except ones with buttons that make a sound.

And here's the promised good ending....I was away for a night with a friend, and when I got back, Janey hugged me and said "You're my favorite person!" A quote from a Mary Poppins song, but she could have chosen any of hundreds of quotes for that moment, and she chose that one. I will remember that always. Janey, you and your brothers are MY favorite people!

Janey loves to draw

Janey adores drawing. Not really drawing yet, but scribbling, and the scribbles are getting more interesting. I love to have her draw, but she finds ANY writing instrument and ANY surface to draw on. I try to keep all crayons, pencils, pens, etc, out of her reach, but with 13 and 10 year old brothers in the house who also love to draw, it's hard. It feels sometimes like living with a mad graffiti artist. Every day I find more surfaces covered. I have piles of paper out at all time, but she prefers other surfaces. Nothing I say or do makes her stop this hobby. It's getting extremely tiring.


Note from many years later, in 2016---Janey is now 12.  It's hard for be to believe Janey ever liked drawing.  She hasn't drawn in years and years and years.  I think this entry was the high of her interest in any kind of writing utensil on paper.  She doesn't ever have an interest in writing or drawing anything.  It's kind of hard to think about.  I think we assume with our kids, that things will be on an uphill trajectory---that the drawing will get better, the writing will develop, that it all will get better.  Sometimes, it doesn't.  I don't mean this to be discouraging, as for most kids, it does.  But in this particular case for this particular girl, no.