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Friday, October 28, 2016

Thank you, Janey, for being such a cool kid

Last night, Janey, Daddy and I had the probably ill-conceived idea of ordering Thai take-out from a town four towns over, on a rainy and traffic-filled evening.  You were up for it, because you are always up for a ride in the car.  You were excited just to be going someplace with your parents.  That's not something every twelve year old girl would be, my sweetie.

I did your hair while Daddy ordered.  I put it in strange Pippi Longstocking braids, because it's so thick and curly that braids stand out to the side.  Then I clipped them together on top.  It looked very elegant on you, Janey, but then again, you always look beautiful.  I told you how lovely you looked, and you admired yourself in the mirror.  You aren't going through that stage a lot of girls do, where you put yourself down.  You know you are beautiful.  I love that about you.

In the car, we got caught in traffic.  But you didn't care, because we were listening to music.  I was using my Slacker Radio app to find many, many versions of "King of the Road", a song you love and I love and my parents loved growing up and in fact a lot of people growing up liked, because it mentions Bangor, Maine, and not many songs growing up ever seemed to know Maine existed.  You don't love it for that.  You love it for the beat, the rhythm, the pacing, whatever it is that makes you able to pick out great songs and enjoy them.  When the versions I played strayed too far from the original, you said "Music, please, music!" letting me know that I wasn't playing Music with a capital M.  You know what you like, and you have great taste.  You mostly like the Roger Miller version and the Randy Travis one, and those are the best, I agree.

On the way back, we played another song you love---"If I Were a Rich Man" from Fiddler on the Roof.  There, I found a version by a woman with a Cyrillic name, a jazzy version without words, instead just repeating the "dabba dabba dabba do" type scat to the tune all the way through.  It's something I would have never listened to, but you loved it and asked for it over and over.  By the third time, I liked it pretty well too, and so did Daddy.  You aren't influenced by anyone else.  You like what you like, and that is great.  We all moved to the beat in the car, driving in the dark and rain, our own little world.

At home, you tried all the Thai food, because you always try everything.  You are an adventurous eater, far more than I am.  We watched "Family Feud" on the old game show channel, and you didn't object or cry for your own shows.  I think you're even getting to like Richard Dawson.  Without us really noticing, you are gradually allowing Daddy and me to do the things we enjoy more and more.  You are growing up.

When you were tired, you said "Snuggle on Mama's bed?" which is what you say every night.  Mama's bed is actually your bed, but we know what you mean.  I lay down with you as you played a little iPad and then fell asleep.  It was your usual bedtime, around seven.  You sleep when you are tired, and you are usually a good sleeper.  Daddy and I stayed awake about another hour, and then we went to sleep too. You're a morning person, like your father and William.

Janey, I know it's very unlikely you'll read this.  You can't read, and if I read it to you, I don't know if you'd understand most of it or not.  And that doesn't matter.  That doesn't make you less interesting, or beautiful, or opinionated, or cool.  I won't pretend it is always easy helping you live the best life you can.  It is hard, a lot of times.  I won't lie and say I don't wish sometimes life would be easier for you, or for us.  But you are one incredible kid.  I love you, Janey.

Wednesday, October 26, 2016

Arm Biting

One of Janey's most consistent challenging behaviors is her biting of her own arm.  It's always her right upper arm.  She raises it to her month and bites the same spot.  It happens any time she is upset, and many times when she's not really upset, but overexcited or wound up in other ways.  The bite varies a lot in strength.  It can range from almost more like sign language with no real biting at all to actually biting down very hard on her skin.  She almost never breaks the skin, but she bites hard enough so she has a permanent hard area of callus where the teeth hit her arm.

The biting started quite suddenly when Janey was around eight.  One Friday, she came home from school with a bruised area on her upper right arm.  We had no idea what it was from until she got upset that weekend and started biting herself right where the bruise was.  From that point on, it's happened at least once a week, sometimes once a day, or hour, or in the worst times, a minute.

I think the biting is sometimes a release, a way to let off tension, and it's sometimes a way to communicate anger or annoyance at us.  When it's mild, I can see just ignoring it or using it as a starting point for discussion---"You are biting your arm.  Do you feel angry?"  However, when it's more severe, it truly hurts her.  This past weekend, when she was crying, I asked her if something hurt, and she said "Does your arm hurt?"  When I asked her to point at the hurty place, she pointed right at the biting area.  It made me feel a huge wave of sadness, thinking about her causing herself pain.

I have very few ideas for stopping the biting.  We've tried a lot of things---an ace bandage over that part of her arm, calling her attention to the biting and asking her to stop each time we see it, behavior plans here and at school, any number of millions of different bite toys, chewable jewelry, fidget toys, even bite-able toys meant for dogs.  Nothing stops the biting.  It seems like part of the whole routine for her is feeling the teeth on her skin.

Why does Janey bite her arm?  I have some theories.  One is that she learned she couldn't bite other people.  It's sad to think she then turned to herself.  If she feels angry enough to bite, and she knows biting other people will cause a big huge scene she wants to avoid, she bites herself.  In thinking about that, I've tried a few times making a big scene when she bites herself, but that hasn't seem to work at all.  Another theory is that the biting has become a habit, like nail biting or hair twirling or something.  But it doesn't happen when she's just bored or doing nothing else.  I've never seen her bite when she wasn't at least a little upset.

Searching the good old internet for ideas about biting is as often not that useful.  It so often seems everyone giving advice goes to their own corner and gives advice based on their own theories.  And often, the "expert" advice seems to assume that the parents have never tried a thing.  Ignoring her?  Figuring out the cause of the biting?  Giving her something else to bite?  Gee---neither her school or us have ever thought of anything like THAT!  It's very frustrating.

A problem with the biting beyond it hurting Janey is that it seems like self-injurious behavior is where a lot of programs draw the line at working with kids.  It's one of the most common questions I've seen on screening-out type applications.  And I can understand that.  It's a scary, awful thing to see at its worse, and I am sure sometimes there's also a worry that we as parents will think that Janey was somehow hurt by someone other than herself.  But it leads to more isolation.

Like with so many other areas of autism, we just keep doing what we can do about the arm biting.  We cobble together various ideas.  We try to keep her happy, which is the best way to keep her from biting.  We talk to her about it, and hope she understands some of what we are saying.  We work hard to calm her when she's upset or overexcited.  And we offer our ears, ideas and thoughts to anyone else dealing with seeing a child they so love hurt themselves.

Monday, October 24, 2016

Trying to radically accept myself

Although I fall far short, my favorite philosophy in parenting Janey is radical acceptance.  I want to accept her as who she is, not try to change her.  I want to delight in her special qualities, without the special being a "special" as seen in "special needs".  I want to be frustrated with her as who she is, not who society feels she should be.  I want her to be herself.  I read a good blog post about this today (read it here) and it got me thinking a lot.  I want to radically accept Janey, but lately, I'm having a very hard time radically accepting myself.

Last summer, I spent a day being researched upon by the Framingham Heart Study.  If you don't know about them, it's worth following the link to find out more.  My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study.  It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan.  Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know.  About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.

That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests.  It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis).  Basically, that means my liver is inflamed and scarred by means of something other than alcohol.   It's a strange disorder.  No-one knows exactly why you get it, and there is no treatment.  It's just---there.  Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.

There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome.   The result is a kind of tiredness that is hard to even explain.  I wake up fine, and I'm fine for about three to four hours.  And then I get tired---so tired that I almost always have to take a nap.  I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.

As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself.  I hate the tiredness.  It makes me feel like a lazy loser.  I get so little done.  I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse.  As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness.  I don't have to hate myself for it.  I can do what I want to do for Janey.  I can radically accept myself"

It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying.  That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to.  If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home.  My health issues are part of me.  They are part of what I need to accept.

I debated whether to write about all of this here.  But I write about Janey, and I want to be similarly open about myself.  It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.

I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago.  I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too.  It's a work in progress.

Saturday, October 15, 2016

The season titles and other communication breakdowns

I'm lucky that in many ways, I'm able to communicate with Janey.  Her understanding of what we say is far better than her speech.  I can tell her something like "go in your room and get a shirt, then get your shoes, and we'll put them on to go for a walk" and she will understand and, if motivated, do what I've asked.  She can ask us for food she wants, for rides, for the bathroom.  She uses gestures to tell us things like "get out of this room so I can watch my show!" or "move your legs so they are in a position that's acceptable to my OCD!"  But sometimes, some concepts and ideas just don't seem possible to explain to her.

A big one that has been a problem for years now happens when Janey wants to watch a video on Amazon Prime TV.  The way their interface is set up, if they have multiple seasons of a TV show, there's a season title block at the start of each season.  This block is the same size as the TV show blocks, and you can highlight it like you do a show.  However, clicking on it doesn't do anything.  It's just something saying "The following episodes are from season two" or whatever.  

Janey is bound and determined to watch the non-existent shows that she thinks are associated with the season titles.  She'll gesture wildly to show me she wants to watch "Season Two".  I've been working hard on teaching her to use the remote to get the shows she wants, and although she's not very into it, she'll try in this case, moving the cursor to the season title and clicking the "A" button.  Of course, nothing happens.  And she starts screaming.

I have explained every way that I can possibly think of to tell her that these aren't show, that they will never be clickable, that they just tell what season we are in.  Frankly, I don't think she'll ever get it.  She doesn't know TV shows come in seasons.  She doesn't get why some blocks would lead to a show and others wouldn't.  She simply thinks for some reason of our own, we aren't letting her watch those shows, and she wants to see them.

This might seem like a little thing, but it's an example of one of the very hardest parts of raising a child like Janey, for her and for us.  We can "assume understanding" as much as we want, we can explain with words and pictures and social stories and charts and examples and all kinds of things, but if it's a concept that is simply beyond her, it doesn't matter.  It's like if understanding string theory somehow came up in daily life for me.  I've tried very hard to read about it, I've watched shows about it and thought about it, but I don't get it and I never will, I daresay.  Thankfully, I don't need to, for regular daily life, but the things Janey doesn't understand do come up all the time.  She asks for chocolate milk when there's none in the house.  She wants to go for a car ride at 3 in the morning or during a snowstorm.  She wants to watch "Hercules" when it's no longer available for streaming or even to buy on Amazon.  She wants to wear her Crocs in the winter.  She wants to not get her hair brushed.  And with all the issues like that, I've done absolutely everything I can to help her understand why she can't, but I truly don't think she is able, cognitively, to grasp the concepts needed.

It's not really autism that is the problem here.  It's Janey's intellectual disability.  Not all kids with autism have an intellectual disability, and sometimes, it seems like it's fashionable to think none do, that it's simply we as parents or teachers or caregivers aren't understanding how to communicate.  I'm sure that's sometimes the case, and maybe often, but sometimes, it isn't.  I feel strongly that to respect Janey is to be realistic. It is not respectful of who she is to deny parts of her disability.  Being intellectually disabled in no way makes her less.  I won't get political, but anyone who uses the old term "retarded" as an insult is not someone I want to deal with, ever.  It's not an insult.  It's not something unspeakable that we have to pretend isn't the case.  It's reality, just like it's reality that there are things I don't have the capacity to understand or do that other people can do.  It's not respectful of me to deny that, and it's not respectful of those who might try to teach me to say they just aren't teaching right.  It's reality.  And it's hard, sometimes, but it's the truth.

Tuesday, October 11, 2016

What I can't stand about the mother in "Speechless"

I've only watched the first two episodes of "Speechless", and I don't plan on watching any more. I'm glad that TV is showing someone like the son on the show, in a wheelchair and without verbal speech.  That's not my issue with the show, although I do wish sometimes they'd show someone with trouble communicating that went beyond verbal speech.  The boy on the show has a lot to say and communicates very well, and of course is also funny and sassy and outgoing and so forth.  And there are kids like him---great kids that I've met, very bright kids and adults in wheelchairs that deserve to be seen as the cool people they are.  My issue with the show is the mother.

If you have a child with a disability, there's pretty much only one personality you can ever have if you are being portrayed on TV or in a movie.  You must be a tireless, relentless, fierce, single-minded, aggressive, angry and over the top advocate for your child.  You must be ready to put everything else in your life on a back burner, including your marriage, any other children you might have, your friends, your hobbies---all of it---in order to devote every single second toward the child with a disability.  You are supposed to fight everyone and everything in order to get the best life for your child.  Everything and everybody except your child is a potential roadblock, and you must be ready to mow them down to get what your child needs.  The result will be, of course, that by the end of the movie or run of the TV show, your child will either be "cured" or will be living the best possible life they can---of course doing things that experts said they could never do, of course surprising everyone with how far they have come, of course making you proud and making it clear that the ends justified the means.  The mother on "Speechless" is that kind of mother.

In real life, somehow it must be that mistakes are made here and there when handing out children with disabilities.  Sometimes, instead of the fierce mother they are supposed to get, they get someone like me, someone who avoids confrontation if at all possible, who is not comfortable demanding anything, who regularly takes her eye off the prize and doesn't follow through with every chance to "fix" her child, who is in fact often not even exactly sure what it is she should be fighting for, if she were inclined to fight.

When talking to a friend about my feelings toward "Speechless" and how I didn't find the mold of the fierce mother, she asked me "Well, what is it you think Janey didn't get because you aren't that way?"  That was an excellent question, and the answer was...really nothing.  Of course occasionally I do wish there were programs for Janey that don't exist, but in terms of what she really needs, she has always gotten it.  I am very lucky that way.  I have to thank the Boston public schools for that.  I've had nothing but excellent teachers for her, nothing but caring administrators, aides, therapists, ABA workers, bus drivers...I've been incredibly lucky.  I can't quite say that's been the case with medical issues, but with the schools, I've somehow been able to get by without ever once having a screaming match at a meeting, or even anything close.

Of course, I do know that I've got some advantages.  I speak English, I'm fairly good at understanding the system, I am able to attend meetings without fear of losing a job, I have transportation, I can read---I don't take any of that for granted.  I know and have met mothers that care for their children every bit as much as I do, but because of various issues, can't work within the system as I do.  I think about Tony's mother a lot.  If she had had a child with autism, she wouldn't have known where to start.  She spoke very little English, she didn't drive, she didn't understand the US school system---she would have been lost.

In an ideal world, everyone would have had the great experience I've had with their child's schools.  We don't live in an ideal world.  I know part of why I am able to not be the fierce mother is because of the work of fierce mothers that came before me, that demanded their children get an education at all.  I respect that very much.  However, I think the media has something to answer to in putting out there a stereotype of a fierce mother.  I think it leaves many parents ready for fights that don't have to happen.  It also gives a huge advantage to those with the means and skills and money to hire people to fight for them---lawyers or advocates or the like.  It's why recent investigations in Massachusetts showed a huge gap between what kind of services kids in rich vs. poor school systems get.

My strong feeling is that schools and parents should be a team, working together to give children what they need.  I'm extremely lucky that is what I have experienced.  But if I relied solely on the media to get an idea how I should view the school/home relationship, I'd see it as a battle with the school on one side and me on the other.  And because of this, I think sometimes schools are expecting every mother to be ready to fight that battle.  They might be waiting for demands from parents, and many parents are ready to make those demands.  I feel in many cases, that is how resources are handed out---by seeing who demands them.  That infuriates me.  It makes me sick, really.  What about the parents who don't demand---because that isn't their nature, or because they simply have barriers to understanding what they even COULD demand?  It is horrifying to me to think that their children might not get what they need while the children of those who know how to play the system do.

I'd love to see a TV show where special educators and parents work together, where the incredible dedication and hard work and love of both are shown.  I'd like to see a mother I could relate to in the media, a mother who isn't fierce but still fiercely loves their child.  I'd like to see some teachers and therapists like the ones I've known, like the ones I met with today at Janey's school, who care about my child deeply, who provide her with the best education they can (and provide me with the respite school gives me).  I'd like to see a child on TV with Janey's kind of speechlessness.  Until then, I'll avoid one-dimensional portrayals of special needs mothers.

Saturday, October 8, 2016

Thinking about Rosemary Kennedy

I just finished reading "Rosemary--The Hidden Kennedy Daughter" by Kate Clifford Larson.  It's a very well written and fascinating account of the life of Rosemary, the eldest daughter in the family that included JFK and Teddy Kennedy.  My mind is swirling with thoughts about the book and her life.

There were really two lives of Rosemary.  One is before she had a lobotomy, one is after.  Before, she was what I'd call mildly intellectually disabled.  Certainly she could do many things Janey can't---read at a 4th grade level, write letters, talk quite well---she functioned well enough to be presented to the Queen of England without anyone realizing she had a disability.  But then, as she entered her early 20s, mental illness started to complicate her life.  She became angry and aggressive, and it became harder and harder to accommodate her needs.  Tragically, her father decided to have her undergo a lobotomy, which went horribly wrong.  After that, Rosemary was severely physically and mentally affected. She did recover slightly in some ways, and occasionally did speak in sentences, and although she lived out her life in a house on the grounds of a nursing home, cared for by devoted nuns, starting about 20 years after the procedure, she did quite often visit her family and was part of their lives, until she died in her late 80s.

Several things struck me very much about her story.  One of them is how even having all the money and power in the world wasn't able to substantially change her functioning.  Sometimes I think "if only I had the money to get Janey the very most cutting edge care, all the devices and lessons and private schools and aides I could imagine..."  But in reality, I truly feel that most of us, Janey and Rosemary included, learn what they are able to learn and do what they are able to do if they are loved and given the chance.  You can make sure they learn what they are able to learn, but you can't really change what that level of ability is.  When I look at other kids I've met at Janey's schools, I see that.  Some make tremendous progress.  Some don't.  They are given the same kind of teaching, the same kind of opportunities, but in many ways, we are all going to be who we are going to be.  And that's not a bad thing, necessarily.  It leads me to what Rosemary didn't seem to get from her parents---acceptance.

Rosemary was moved from school to school, from program to program, in hopes of making her "normal".  When I look at what she was in her early life, I have to admit I think I'd be thrilled if Janey was able to do the things she could do.  But I don't think it ever was considered to just work with what she had, to say "let's find a way to give her a good life with the abilities she has right now"  I wonder if that had a part in her lashing out eventually.  I think about what it must feel like to be constantly pushed to do or learn things that are beyond one's ability.  If someone decided to spend all their time trying to teach me calculus, or even legible handwriting, or gymnastics, or hairdressing, or a number of things I can't do and I honestly don't think I'm capable of doing, I can't even imagine how upset I'd feel after just even a few hours.  If this went on for years, I think I'd be very, very ready to lash out in any way necessary to get it all to stop.  I don't blame her parents.  In many ways, they were ahead of their time.  They wanted to give Rosemary the best life they could, and in their time, that would be by making her not disabled, and like so many desperate parents, they did everything they could to try to do that.

There's a fine line, of course, between teaching someone what they CAN learn and not pushing them to do what they CAN'T learn.  I know it's sometimes impossible to know where that line is.  But I think our kids let us know.  Janey learns eagerly, when she is able to.  I have to trust her enough to believe that she isn't trying NOT to learn.  I have to believe that the fact she can't read or usually talk in full sentences or be completely toilet trained after many, many years of working on those things means that to some extent, there is a reason she can't learn those things.  It's not giving up to admit that, I don't think, any more than it's not me giving up that leads me to say I'll never be a mathematician or a gymnast or a hairdresser.  It's a matter of deciding whether to go with strengths or not.

In the end, although Rosemary's life story is very sad in a lot of ways, I was hugely touched by something her sister Eunice, founder of Special Olympics, said in a speech in 2007 "Tonight, I want to say what I have never said before: more than any one single individual, Rosemary made the difference"  She was referring there to her influence on her brother's presidency, but in many ways, the fact that she was part of a hugely influential family who devoted much time and energy and money to helping the disabled means that she made a difference for probably millions of lives.  She mattered, as does Janey, as do all our daughters and sons with disabilities.

Monday, October 3, 2016

"Participate effectively and maintain a safe environment"

I took Janey to a parade yesterday, along with my friend Maryellen.  I don't think Janey has been to a parade since she was three or so.  Overall, she loved it.  Parades pretty much have Janey's favorite features---music, dancing, being outdoors and able to move around and be loud if desired, all that.

For me, a few parts of the day were bittersweet.  A dance troupe played a huge part in the parade, a troupe from a big local dance studio.  I'm not a dance person, but I am pretty sure if Janey had followed a more typical course in life, she'd have been involved in dance.  She's amazing, in that she instantly copied every dance style she saw during the parade and did her own dance at the side of the street.  She got many smiles and waves with her high enthusiasm and her moves.  It was something watching her, doing something I couldn't do for the life of me.  As I watched the literally hundreds of young girl dancers go by, I kept thinking "Why isn't there a place for Janey among them?"  I found a list of dance programs in the Boston area for kids with autism.  I'm glad there are some, but like I've found so often, they aren't for Janey.  Here's what one of them said is a requirement for participating--- "Students must be able to participate effectively in lessons or classes and maintain an environment that is safe for themselves and others."  Yeah.  Janey isn't going to participate "effectively".  She would probably not "maintain" the environment they are looking for.  She would love the class, she would probably learn, but as several of the five for so programs explicitly said, they are looking for "high functioning autism" kids.  And sometimes, I get mad about that.  They have every right to accept who they want to, but damn it, I wish there were programs that said something like "We will work with children at any level of functioning, if they have a love of dance"

I felt encouraged by much of Janey's behavior during the parade.  She's still been in a bit of a manic phase, and the weekend was trying at points, with her often going over the top from excitement to anger and screaming.  But a few years ago, I would not even have attempted something like this parade, even with the wonderful help of Maryellen.  As we walked toward the parade route, Janey ran ahead of me a bit, and I felt so happy she is able to do that now, and I know she will stop when I shout out to her to do so.  She's able to have that little bit of independence, which is a very nice thing for a 12 year old.  She stayed with us at the parade without having to have her hand held, and she seemed to understand that she needed to not go into the street where the parade people were.

There was one moment, though, when I was quickly reminded that I need to always be on guard with Janey.  Maryellen had an umbrella, as it was drizzling.  Janey wanted to hold it, and we think to twirl it on the ground.  Before either of us completely realized what was happening, she moved close to a couple small children and started wildly flinging the umbrella around.  It could have very easily poked and hurt the kids.  We grabbed it, apologized and folded it up.  But she is so fast that it's scary.  Sometimes I'm almost lulled into relaxing for a minute when we are out and about, and I just can't.

Janey watching the parade is in many ways a metaphor for what increasingly frustrates me about life for a child like her.  She can watch, she can enjoy, but she can't really participate.  She dances on the sidelines.  And even on the sidelines, I can for a few minutes just feel like she's any other parade watcher, but if I let my guard down, things can suddenly turn.  I can't ever relax.

Because I am always arguing back and forth with myself, I'm of course thinking "She doesn't know she isn't participating.  She is happy dancing on the side."  And that's true.  Fine.  But imagine Janey belonged to almost any other distinctive group of kids.  And imagine that the group she belonged to was a group simply not welcome, not included, in basically everything.  In the past, we might have said "That's just the way it is.  It's too hard to include that kind of kid.  They don't need to be included to be happy."  Well, sometimes I have a radical idea that Janey SHOULD be able to be included in ANYTHING that other kids are included in.  Or at the very least, if there is an activity that is said to be for kids with special needs, or even specifically autism, that it should include ALL kids with autism.  Sure, it would take some doing.  But why not?  Why can't it be that way?

I do live in the real world.  I think often of Janey's old school, which tried harder than anyplace to live that dream of including all kids, and in the end, wasn't able to do that for Janey.  And thinking about that, even after several years, can make me cry.  I don't have solutions, or answers, really.  I accept, at many levels, that in the real world the challenges of Janey's behavior do leave her out of the mainstream.  But sometimes, I dream of a world where she's truly and totally included.