Jealousy, Anger, Boredom, Fear....

In my own mind, there is a list of acceptable emotions to have as a parent, especially the parent of a child with autism. Happiness, pride, love, determination, hope, curiosity, amusement, empathy---you'll notice the list is full of positive or encouraging feelings. But there's also a list of feelings I classify as, if not forbidden, at least not to be spoken of much. I'm going to try hard here to be honest about some of those.


Jealousy


In my ideal version of myself, I'm never jealous of other parents or kids. I delight in what Janey can do, and never think about what other kids are doing. In reality, sometimes I am so jealous it's hard to describe. I see other girls her age on Facebook, doing all the regular 13 year old girl things, and I can barely stand it. I look at other mother/daughter relationships, with all their ups and down, and I long for that kind of relationship in my own life. Every child with autism that functions at a higher level than Janey can make the green-eyed monster come out in me. The jealousy isn't all the time, but when it shows up, it's powerful.


Anger


We got a new couch recently. For the few of you that have seen our furniture, you know it was highly, highly overdue. It's nothing fancy, but I had this dream of it looking fairly good for maybe, say, a month. This Sunday, as Tony drove Freddy back to school and I stayed with Janey, against my better judgement, I went to the bathroom while Janey was watching TV. In the few minutes that took, Janey got a bottle of salad dressing out of the refrigarator and, for reasons known only to herself, poured the whole bottle on the new couch. I don't get angry that easily, but I made an exception there. I was furious. Life with Janey presents a lot of moments like the Couch Incident. In some ways, it makes no sense to be angry at Janey. It does no good, I don't think she usually gets why I'm angry, it doesn't do anything but get us both worked up. But having a child who does inexplicable and destructive things on a fairly regular basis---yes, I get angry sometimes.


Boredom


For some reason, this feels like one of the most taboo emotions to have when dealing with your autistic child. I feel like I'm supposed to consider every moment an exciting learning opportunity, a chance to teach and help. However, the truth is, sometimes life with Janey can get boring. Her favorite thing to do with me is what she calls “Snuggle on Mama's bed”. In reality, it's her bed, and it's not usually really snuggling, it's lying there next to each other. My role in this game is to sing little songs and recite nursery rhymes and otherwise carry on a monologue. Sometimes this time feels wonderful, a time of connection between us. Other times, though, I am just plain bored of it. Janey doesn't want me to sing or recite or talk about anything new. She is open to new music in the car, but not when we are snuggling and I'm singing. She doesn't want to talk herself, or be asked questions, or listen to any books except a few nursery rhyme ones and occasionally “Go Dog Go”. I'd say we spend a couple hours a day in this mode. And it gets boring. Very, very boring, at times.


Fear


Recently, there's been attention in the news to the hideously high rate of abuse of those with special needs. I can't read through these articles, but I've read enough. When I think about that kind of thing...well, often I just can't. The fear would overwhelm me. And in the background, there is a fear that never ever goes away, the fear of what will happen to Janey when Tony and I are gone. When I think about her in any kind of situation where she is scared or confused or being hurt or not cared for---the fear is horrible. Add to that the fear that was planted, planted deep, when she lived with a burst appendix for three days without us knowing, the fear of the harm that can come from her lack of ability to communicate well...the fear is always, always there.



There you have it---the emotions that often get left out of what is openly discussed when talking about this special needs parenting gig. It's not an easy job. It's the job I'm committed to for life, and my love of Janey is my pay. But like any job, no matter how well paid, there are days you just want to gripe, to speak openly about the sometimes tough work conditions with others on the work site. Thanks for listening.

Snow Days

We had a fairly good-sized snowstorm yesterday, which resulted in a snow day, and another snow day today to finish the cleanup.  As many of you are all too aware, unexpected days off are not a big favorite of Janey and others like her.  However, the past few days haven't been bad at all.  They have been more...interesting.  

Tony was home yesterday too, as his office was closed.  That was great.  Janey had had a tough week, and I was prepared for a day with lots of screaming and tears, but I don't think I saw either one once yesterday.  She was happy and a little bit manic.  She ate a huge amount, and ran around the house a lot, and danced a ton with Tony.  At one point, she suddenly said "Shut up!" in a loud, jovial voice.  She then proceeded to pace back and forth and say "SHUT UP!" for about an hour.  I'm not sure where she picked that up, but she enjoyed it a huge amount, and so we just went with it.  She asked a lot for car rides, but did well when we told her that just wasn't possible.  I kept having her look out the window, although I don't think she quite got why the blizzard conditions were standing in the way of a car ride.  

Janey is usually fast asleep by 7 or 7:30.  She's big on early to bed and early to rise, like her father.  So when she was still awake at 8, we were a bit surprised.  We took turns lying down with her.  She stayed on the bed, playing off and on with her iPad (which we let her take to bed, as it generally doesn't interfere at all with her sleep) and singing and asking for food (which we didn't give her, as she'd had plenty during the day)  I was with her until 10:30.  She was still wide awake.  Tony took over and I slept until 12:30.  I relieved Tony---Janey still wide awake.  I lay down with her and she looked at me with a hugely happy face, just smiling and staring at me.  My eyes kept closing, but when they opened, there she was, watching me.  I last saw her awake at 1:30 am.  At that point, either I didn't wake up again or she finally went to sleep.

We have a few theories about the sleepless night.  She didn't go outside at all, all day, and maybe the lack of daylight did something.  Also, because she couldn't go for a car ride, a few times Tony took her upstairs to where his brother lives, and she had "butter", which is what she calls Nutella.  Chocolate is often the culprit when she doesn't sleep, although lately that is usually only if it's close to bedtime, which it wasn't.  My main theory, though, is just that she was in one of the moods where she's hyper-alert, and sleeping is hard when you are like that.

Today, she was sleepy.  She woke late and then took a nap.  Tony worked a half day.  She was still peppy, but not quite as much as yesterday, and there were a few more tears and screams.

We noticed, both days, something we often see when Janey is home with both of us for a day or two.  Her talking increased.  On days she goes to school, we hear very little talking in the afternoon or evening.  I think she's tired out, and also, perhaps associates talking with schoolwork, and decides to give herself a break at home.  It's fine, but it's nice hearing more talking.

An illustration for "The Ten O'Clock Scholar

Yesterday, when I was attempting to read her a book and she wasn't interested, I quickly before closing the book asked her to point to a few things in the pictures.  With the air of wanting to just make me happy so she could move on, she quickly and with complete ease pointed to three things---an owl, a blackboard and a bell tower.  All of those are words she's never said, to my knowledge, and words that I'd really have no way of knowing she knew.  I've done quick pointing tests with her like that enough to realize she has knowledge of the meanings of many, many words she never uses or lets on she knows.  I wish there was a way she could use these words, to enrich her ability to actually communicate, but I just don't really know how to help her with that.

Today, we were playing a game we often play, where I recite the start of a nursery rhyme and she finishes, or finishes some of it and waits for me to say the next line, and we go back and forth.  I love having an iPhone, because I can quickly grab a video, which I did.  I posted it on the Facebook companion page to this blog, if you are interested.  It's another example of things Janey knows you would not know she knows.  I would say she knows hundreds of nursery rhymes.  Of course, among the ones I started the film is one I don't think she did know ("A ten o'clock scholar"), but that is a rare thing!  If I've read one to her two or three times, it's in her head someplace, memorized.

So---I hope tonight is a better sleeping night.  I hope Janey continues the happier mood for the weekend.  And I certainly hope the storm predicted for Sunday night doesn't happen, so Monday is not another snow day!

Does autism acceptance include respecting NOT communicating?

I like to think I'm pretty good at accepting Janey for who she is, at celebrating what she brings to the world, at not wishing she was who she isn't.  However, I've never quite accepted one part of her---her limited communication.

Janey's speech is a mystery to me, and to many who know her and work with her.  It's hard to describe how it is.  I use the term "minimally verbal", which I am not sure is an official term.  Janey says a few things readily.  She asks for food and TV shows by name.  She asks to "snuggle on the bed" and for a shower.  She says "want disc" when she wants to hear music, in any form.  That's about it, for communication type talking.  However, she CAN say almost anything, in echolalia form.  She can recite movie or TV lines with precision and expression, for hours on end sometimes.  She can also sing what I believe is any song she's ever heard, in tune and with all the lyrics, although never on demand, just when she wants to.  So it's not a matter of a problem with forming words.

Of course, speech isn't the only way to communicate, but Janey doesn't communicate much in other ways either.  She has shown violent opposition to iPad type speech programs or PECS type picture exchange talking, at least at home.  She has no interest in sign language.  She doesn't like to point out things, or gesture.  She can't hold a pencil well enough to write, and shows no interest in doing so.  She isn't able to type.  Overall, her communication of any kind is quite limited.

And I don't accept that well.  I want her to communicate with me.  I want it very much.

This picture captures the look I'm talking about pretty well.

A scene that has been repeated hundreds of times...Janey and I are doing her favorite thing, snuggling on the bed, the bed she calls Mama's Bed although it's been her bed for years.  She is very happy.  I am singing to her, or making my fingers pretend to be people jumping up and down, or reading her a nursery rhyme book, or often, just smiling at her.  And then I go and spoil it.  I pressure her to talk.  I say something like "How was school?"  Or I start a sentence for her "Today at school I...."  Or when I'm reading a nursery rhyme, I stop in the middle "Humpty Dumpty sat on a wall, Humpty Dumpty had a great....", waiting for her to say "fall.  And hundreds of times, the same thing happens.  Janey's face falls.  She gets a tense, distant look.  She looks scared, anxious.  We have gone from connecting to not connecting, strangely enough, because I am trying to connect in the way I want to connect.

What if I accepted Janey is communicating just as much as she wants to?  That would be a radical thing for me to accept.  But it might also be a realistic thing to do.  Janey's speech has never really improved from the time of her big regression, at age 3.  It's sometimes wobbled---gotten better for a while, and then worse for a while, but it's never stayed consistently better.  And this is despite speech therapy three times a week for eight years now, despite being in a family that surrounds her with talking constantly (none of us are very good at ever shutting up), despite so many attempts to give her alternative ways to communicate.  No matter what I've done, she communicates just about the same amount as she ever has.  So what if I just decided to stop pushing her to do more communicating?

When I think about it, Janey HAS communicated her feelings about the subject of communication itself pretty plainly.  That look she gives me, and the fits she has thrown when we insisted she "use her words", the anger reactions to apps like Proloquo---that's communication, communication I have chosen not to accept, not to hear, because I don't like the answer.  What if I respected what she's told me?  What if I gave her credit for communicating just as much as she wants to?  She CAN talk.  She CAN use an iPad.  If she wants to communicate more, well, she's shown me over and over that if she wants to do a thing badly enough, she does it.  So maybe it's time to listen to her, and stop pushing her.  Maybe eight years of her firmly telling me in her own way that she's communicating as much as she wants to should be enough for me to finally get the message.  Maybe sometimes acceptance means accepting that what our child wants isn't what we want them to want---maybe.

YouTube with ease

A few days ago, when trying to round up all three kids for dinner, I realized that all three of them were doing the exact same thing---browsing YouTube.  That was an amazing moment for me.  Usually, I think of Janey as a whole separate category of the family.  There's the boys, and there's Janey.  That might have been the case even if she hadn't been autistic.  She is a lot younger, and she is the only girl.  But her autism sets her apart even more.  The moments of her just being one of the gang are few.  And they are great.

Last night, I watched Janey on YouTube for a long time, and I was amazed.  She uses it with complete ease.  She doesn't type in things to search for, but other than that, she can pretty much do everything the boys do---skip ads, rewind parts of videos, pick a new video from the ones offered, use the back button, make videos smaller or larger, make them louder or softer---all as easier (or more) than anyone could do.  Her choice of viewing probably isn't typical for a nine year old---she loves The Doodlebops, Busy Beavers (a line of videos designed to teach English to non-English speaking kids), nursery rhyme videos, and my personal favorite, videos of people opening Kinder Eggs---but she watches them as intently and as addict-ly as her brothers do.

So why can she learn to use YouTube so easily and so well, when after 7 years at school, she has trouble naming letters, counting objects, speaking in full sentences, greeting familiar people?  I think the difference is motivation.  She is extremely motivated to use YouTube.  It's highly rewarding---interesting videos she can completely control, millions of them at the end of a mouse.  The rewards are immediate and pleasurable.  Letters?  Not so much.

The other answer is that she DOES know a lot of what school (and I) have worked to teach her, but she feels no need to let us know.  Many people working with Janey have suspected she can read.  I think she can, too---in fact, I KNOW she can read some words, because she can have two videos identical except for the title, and she knows which one is which.  But she has little motivation to read, or to SHOW us that she can read.  I think she might actually actively be hiding it.  Several times, when we were not looking, she somehow got to a video that I don't think was one of the choices along the side picked by YouTube.  I suspect, I really suspect, that she typed things into a search bar.  I have no proof of that, but I have my suspicions.

So, how do we make use of the YouTube watching skills?  That's the big question.  More and more, my inclination is to NOT actively try to make use of them.  She loves YouTube, I know she is learning from it, the videos she watches often are instructional type videos I couldn't FORCE her to watch if she didn't want to---maybe I just need to leave well enough alone.  The past seems to support this idea.  She hasn't learned the things we all have actively been trying to teach her, but she has learned with complete ease the things she wants to learn.  So maybe time actively trying to teach her things is better spent giving her time to teach herself, and the tools to do so.

All of this being said, I will go back to the happiness of the moment of realizing that all three of my kids were enjoying the same thing at the same time.  It was a special moment for me---one that for that moment anyway erased the divide that has always made it Janey and then the boys, and made it instead my three kids, the YouTube addicts.

Reading to Janey

I didn't have a lot of preconceived dreams about what being a mother would be like before having kids, but I had one very strong one!  I dreamt of reading to my kids.  I had all kinds of fantasies about how we'd pick out a huge pile of library books and read them all, and go back the next day and get more, and how I'd have to negotiate about how many bedtime stories I'd read, all the while being secretly thrilled they wanted more than there was time to read.  Well---like most parenting fantasies, this one never came to pass.  I read a fair amount to the boys, but it was never as big a part of their lives as I'd wished, and neither of them read much for pleasure.  And Janey---reading to Janey---well, it's different than what I pictured.  But I'm starting to realize it still can be a great way for us to connect.

The first thing that has to happen with Janey and reading is that she has to love the book.  It's very hard to figure out what books she is going to love.  Her choices seem pretty random to me---a Wo Wo Wubsey book about tails?  A book about a dog encountering different sounds?  A random clothes catalog?  I can pick out a book I'm sure is going to be something she'd like, and she firmly closes it the minute I open it.  I have to go with what she likes, for whatever reason.  Right now, the book she's picked is a book of nursery rhymes, with very simple versions of the rhymes and with embossed pages.  (here is is, if you are interested)

Once we have the book, there's the reading.  But it's never a straightforward, read from beginning to end, read all the words reading.  Instead, after I read a few words, Janey grabs the book and closes it.  Then, if she really likes the book, she re-opens it, finds the part she likes and hands it back to me, saying something like "Humpty Dumpty!" which means I am to re-read that part.  I do, and often she points to it again.  I read it again.  This can go on for 10 or 15 rounds.  After a while, before I go insane, I quickly sneak in another rhyme.  That usually causes the book to get grabbed and shut.  But then, sometimes, when she reopens it, it's to request the rhyme I snuck in.  It has to be her idea.  And so we go on, sometimes for a long time.  We might only read 4 or 5 of the rhymes total, but we read the heck out of the ones she likes, and she is delighted.  She loves hearing them, and doesn't get bored.

I used to get very frustrated by this type of reading.  I felt like all we were doing was sort of a form of echolalia via my reading---I was doing the echolalia for Janey.  But I've tried to get a new attitude about reading.  The point, with Janey, isn't really to read a book.  It's to interact, and when we do our reading routine, we are interacting.  Janey is communicating what she wants to hear, I am spending time with her doing something we both enjoy, she is very possibly connecting the words I often put my finger under as I read with the sounds---she might be learning to read.  And she is happy.  She is getting joy out of a book, and isn't that the point?  I have had to adjust my thinking about books quite a bit.  Books can be like toys, and in fact Janey is much more likely to interact with a book than with a traditional toy.  Wasn't that my dream, in a way?

My mental list of dreams for Janey is not long.  I hope she is happy in life, and safe, and loved.  But I will admit in that list is a strong hope she will learn to read well enough to read on her own, to enjoy reading.  She can read a little---we have seen that despite what I think is her desire for us to not know she can.  But if I ever see her sit down with a book and read it to herself, well, that will be a top ten lifetime moment for sure.

"That's the sad part"

In the car, or during one of the many times a day she wants me to "snuggle on Mama's bed", I often recite nursery rhymes to Janey.  Janey likes to hear them, and frankly, it's sometimes just to keep me alert and not falling asleep, as she can be a poor conversationalist at times.  We've been doing this a lot lately, and the other day, I was reciting "Sing a Song of Sixpence" to her (you probably know it, but if you don't, it's here) and she was singing it back and happy.  Suddenly, though, she wasn't.  She started screaming one line of it---"And down came a blackbird and snipped off her nose!"  Which, if taken in isolation, certainly is a little bit of a disturbing line, but Janey had never particularly noticed it before.  I immediately started my patter "that part is VERY PRETEND!  Birds NEVER snip off people's noses!  That's a very silly part!  It's not true at all!"  Janey started reciting this back, and then saying the whole rhyme, and while she screamed the snipping part, she didn't get too upset by it.  About the third time she said it, after that line, she said in a thoughtful voice "That's the sad part"  I was blown away.  I hadn't used the word sad, and I've never, ever known Janey to comment like that, on something abstract like a nursery rhyme.  I've never really heard her call anything sad on her own, although she'll say "I am sad!" when I ask if she is sad or angry, sometimes.

Of course, it set off a big wave of thinking on my part.  I wonder how much more Janey understands of stories or songs or poems.  Last summer, she got upset when she heard the song "He Stopped Loving Her Today" (this is the post about that)---that's the closest I can remember to this.  It makes me think that a lot of times, when Janey gets upset out of what seems like nowhere, it's not nowhere.  It's something she's just heard, or something she is thinking about or remembering.  We know she gets upset about tone of voice, if she thinks we are arguing or upset, and I know some videos upset her after a number of viewings, when she starts to understand them more, but I hadn't really thought she understood more abstract readings well enough to get upset.

I am thinking lately I underestimate Janey a lot.  I wish I didn't.  To someone reading, hearing about incidents like this, it might seem obvious she has a lot more ability to understand than I give her credit for.  But I write about the exceptional incidents.  There can be days and weeks and even months where Janey gives no sign of understanding things like that rhyme.  I read someplace recently about a mother saying she almost hopes her autistic child doesn't a mind that is hidden and secret, that is understanding everything, and I can get that.  Of course I wanted Janey to do all she can do, but it's heartbreaking to think that she might be in there getting all we say and everyone else says, bored by schoolwork that she has mastered mentally years ago, longing for me to read her some kind of complex literature, and that I'm failing her by not doing so.  I don't think that it's the case.  I think Janey does understand a lot, but I think these moments of extreme clarity are like the nights that somehow you can pull in very far away radio stations, because the conditions are just right.  The receiver is there, but so many other components are there too, a lot of which need to be lined up just right to have those rare moments of radio from far away (if you are interested in this hobby, called MW DXing or AM DXing, here's a Wikipedia article about it!)

So I am going to try to remember that it might be the rare day that Janey is receiving enough to be worried about a blackbird snipping off her nose, or someone stopping loving someone.  I want her to know that I will do everything in my power to keep the blackbirds at bay, and I will never, ever, ever stop loving her.

Responding to delayed echolalia

Most of what Janey says is delayed echolalia. She talks mainly in quotes, from videos, songs, from stories or poems she's heard, and less frequency, from actual speech of parents, siblings, teachers, etc.  It's always been very tough for me to figure out how to respond to her delayed echolalia.  I've read all I can on this, and asked a lot of people with knowledge of autism, and have gotten a variety of answers.  Some sources say to ignore the DE, which just feels wrong to me.  Others say to respond to what it seems like Janey is TRYING to say, for example, if she quotes part of a video about eating, to offer her food or ask if she is hungry.  I've also read I should point out that she is quoting, and try hard to get her to say something original.  None of those idea feel totally right to me, and of course, it's probably a case where NOTHING is totally right to do. 

Lately, I've been trying something new.  If I can identify the source of the delayed echolalia at all, and I can remember what comes next, I respond back with that.  For example, Janey quoted a part of an Angelina Ballerina video to me today about telling a lie, from when Angelina tells people her mother is having a baby when she isn't.  I remembered the quote, and said back "I have to admit, when you tell a lie, it's a whopper.  And a little embarrassing", which is what Angelina's parents say to her after her lie is figured out.  The look on Janey's face was enough to make me think I was on the right track.  Janey looked thrilled, like I was really getting her.  I had let her know I knew what she was thinking about, and I added to it.  Janey then said the next line, which I hadn't remembered, and looked at me eagerly, but I didn't have any more memorized.

I think what happened here is that I gave Janey an idea what a conversation feels like.  She said something, I responded with something that related to what she said and added to it.  She looked so happy, like I had figured out what she'd been looking for.  At this point, Janey's speech is not at a point where real conversations can happen often.  But that doesn't probably mean she wouldn't like the good feeling of having a conversation, and maybe somehow the delayed echolalia is partly an attempt to have one.  This also might be why she loves nursery rhymes or predictable fairy tales so much.  They let her start her version of back and forth conversations.

Of course, I wouldn't be me if I didn't have a lot of doubts about whether this kind of response is a good idea.  Am I just encouraging rote reciting?  Am I losing out on an opportunity to work on REAL speech?  What I've told myself back is that it's been many years now, and Janey doesn't seem to be making a lot of progress toward real speech.  At this point, I think the most crucial thing is to let her connect via talking, to keep her interesting in someday talking more usefully.  If I'm always answering her in a way that doesn't let her feel satisfied and happy, I don't think I'm encouraging her to talk.  As often, Janey is showing me what she needs, I think.  When I respond to her quoted speech with the next part of the quote, she gets a look in her eyes I don't often see, a happy, connected look.  She looks right at me, and looks eager to go on with the back and forth quoting.  I think I'm going to go with this approach for a while, and I might spend more time with Mother Goose type reading, to give her more lines to say back and forth that I am familiar with.  As almost always, I'm making it up as I go along.  It's the best I can do with the unique kid I've been given.

Autism Pride

I just finished a book which was very thought-provoking, "Weather  Reports from the Autism Front" by James C. Wilson.  He writes about his 26 year old son, Sam, who is autistic.  Of all the books I've read about autism, this one was the most tuned into the autism acceptance movement.  The author reads a lot of blogs written by autistic adults, and works very, very hard to give his son the best life he can.  At times, it seems like he does this to the detriment of his own life and, from when his son was younger, to the detriment of his other two children's lives.  Sam comes first, in all cases, it seems, whether he is interrupting the author's teaching, hitting the author, demanding attention during the few times the author gets to talk to his adult daughters, etc.  I felt a little put to shame by his devotion, but I can see where he is coming from.  He also talks a lot about the major autism organizations, like Autism Speaks or ASA, and doesn't like them much, as their focus is very much on fundraising to find a "cure".  I can agree there.  The point I most liked was about how on days like Autism Awareness Day, you would think there would be events for actual autistic people, but instead there are fundraisers, golf tournaments, walks----things to raise funds and awareness, but not to help those of us with lives already affected by autism.

The book also pointed out something I hadn't thought that much about.  When there is talk about finding a cure, or a cause, of autism, that is not really talk about curing the kids who currently HAVE autism.  It's about preventing more children being born with autism, through pre-natal screening, or it's about figuring out very early a child might be prone to autism and preventing it from ever really showing up.  It's like saying "It's sad you are in a wheelchair, but instead of creating curb cutouts and putting elevators in buildings, we are going to work hard to make sure no MORE people are in wheelchairs"  Admirable in a way, but it pretty much makes the person in the wheelchair a sad side note.

I loved it that the author found his son interesting and funny.  Although he says a few times Sam is low-functioning, I guess that would make Janey EXTREMELY low functioning, as Sam can read, was doing regular schoolwork until 7th grade, uses words like "oxymoron" correctly and so on.  But Janey, even without being able to do things like that, is amazing sometimes.  This morning, as she did her random line reciting all the way to school, I was in hysterics over and over with her phrase choices.  One was "Apprehend that criminal!  Wait, he's not a criminal, he's a Care Bear!"  She also says much of the Lord's Prayer now, but inserts a lessor-know line in the middle "Along came a spider, and sat down beside her", which, if you are listening mostly to the rhythm of the words, fits rather well.   We never know what she will come up with next, what song will be her new favorite, what show will delight her next.  I think sometimes we parents of children with autism feel we are supposed to not enjoy the quirky traits, that anything that isn't "normal" needs to be extinguished.  That's an area where I am very with the autism acceptance and pride people.  There are parts of being autistic that are amazing, interesting and unique.

However, I don't think the author, or some of the autistic adults quoted in the book, truly get autism like Janey's.  I hope Janey will be able to self-advocate some day, but I am not sure she will.  I am not going to dismiss the lives of my sons to solely concentrate on Janey.  I think Janey deserves as happy and full a life as she is capable of, but so do they.  And so do I.  I want a world where Janey is accepted, is loved, and is cared for, and where I can feel pride in what she can do, while still admitting how hard what she can't do is for her, and for us.  I guess I want it all.  And who doesn't, for their kids?