A dream of a race

The other night, I had a dream about a race.  In the dream, as often in my dreams, I was a very good runner (in real life, I simply can't run at all).  The race was being held in a Nordic kind of place, on a snowy road.  I was near the lead when we came to a very steep hill.  I told myself I'd get up it fine if I kept my eyes closed, so I didn't notice I was on a hill.  That strategy was going well, but for some reason I opened my eyes, and I couldn't go on.  So I turned around and ran the opposite direction.  I felt unsure about this, wondering just what the procedure was for running a race backwards.  I stayed close to the edge of the road, as to not get in the way of the runners going the right direction.  The dream ended after I got back down the hill, still running.

I'm a heavy dreamer, with almost every night featuring dreams, usually even more complicated than this race one.  But the race has lingered in my mind, and I'm starting to see it as an analogy of my life with Janey.  Not that I think my mind was thinking up analogies in the night, although who knows?

The running with my eyes closed part, to keep from realizing what a steep hill I was on...well, I do that a lot, figuratively.  One way is by not being around typical kids Janey's age much.  Of course, I know that most 14 year olds can talk well, read well, are fully toilet trained, are starting on the path to adulthood.  But by just not thinking about that, I can keep from comparing Janey, and comparing is one of the few things I can say very strongly not to do.  I keep my eyes closed in other ways too. In a way, I also don't compare my life to other 53 year olds like myself.  Maybe of them are starting to see the light at the end of the tunnel of childrearing.  They are seeing grandchildren, going on trips, looking toward retirement perhaps.  They are able to do such things as eat out for dinner.  They can attend college graduations without needing to worry about childcare.  They are at a different stage of adulthood than I am.  But if I don't think about that, don't compare, my life seems, well, just my life.

When I do open my eyes, at times a despair washes over me.  I feel, like in the dream, that I can't go on like this.  I am overwhelmed.  So mostly, I just don't think about the parts of my life which have so much left the mainstream.

Then---racing backwards.  Being on an opposite path, running the same race but in the other direction.

Life with Janey, as it races on, is often like an opposite race.  We aren't preparing her for college.  We aren't thinking ahead to her life on her own.  We are preparing to care for her for always, and if we look to the end of the race, it's a scary thing.  There is not much of a set path for an opposite race.  Sometimes it does feel like we are on the edges, staying out of the way of the regular racers, the ones heading steadily to the goal.

But in the dream, I recall seeing how lovely the snowy path was, even as I ran it in the opposite direction of the other runners.  That, too, is true.  I've followed the news of celebrity college cheating with a bit of a feeling close to snugness.  I don't have to worry about that.  I read about parents struggling with homework.  Janey doesn't have homework.  I hear about the pain of breakups, the worry about girls out on their own, the body image issues...and I can feel truly glad those aren't part of my life.  Not glad for Janey, missing the highs that go along with those lows, but glad purely selfishly for me, for the more intensive but vastly different parenting she requires.

I often like to search for an image to go with my posts.  I tried and tried to find a picture that looked like the hill in my dream.  I wish you could record dreams---maybe someday soon!  But until then, I'll include a picture of Janey I took this morning.  I guess dreams are like lives.  You never can quite see what another person's dream is like.  You can never quite live another person's life.  We can just live our own, and do our best with the particular path we are following.

Open Letter to Staring Lady

Dear Staring Lady,

I was the woman sitting next to you in the fast food place that will remain unnamed, in the somewhat snooty suburb that will remain also unnamed.  We were both with our husbands and one daughter.  Your daughter was about three, a very cute and obviously bright little thing.  My daughter was 13.  She was the one you were staring at.

You know, you forced me to admit I've been lying, to myself and others.  I have been saying that staring doesn't bother me any more, that I don't even notice it.  But I guess what I really meant was some kinds of staring don't bother me.  Little kids staring?  No problem.  The kind of staring that also includes a smile, a look that says "Your daughter is beautiful and interesting.  I see she might also have some kind of disability.  I'm pleased to see her, and kind of fascinated"   That kind is okay too.  But your kind of staring?  Just plain old gaping, openly and for long, long moments?  No, I'm not okay with that.

The thing is, we don't often eat in public.  But we decided to try it, today.  And we were thrilled at how well Janey did.  She was wonderful.  No screaming, no running around, no outbursts or tantrums.  She was happy.  She sat eating her food with joy.  In line, before that, she was so happy she jumped a bit, but not in a way that would affect anyone else.  As we told her over and over, we were very, very proud of her.

But you stared.  You kept looking at us, and not with a nice look.  It was a look that seemed to say "Why are weird kids allowed to be out here when I'm trying to have a meal with my perfect family?"  Maybe that isn't what you were thinking.  But you sure fooled me.

You know, I can judge too.  I didn't stare, but I listened.  I listened when your little girl got upset because you got her grilled nuggets, not ones with breading.  She wasn't used to that.  She said "These aren't nuggets!  They are CHICKEN!"  I thought that was pretty cute.  But you insisted she eat them.  She got upset.  I was thinking "What's the big deal?  Who cares?  You have a daughter that can talk, that can express opinions.  Enjoy that!  Get her some regular nuggets if that's what she wants!  Or at least say something to her to let her know you understand change can be tough.  Don't you get that it's amazing, it's a small miracle, it's something to treasure, that you have a child who talks so easily?"

I could understand your staring a little more if Janey could possibly have been bothering you in any way.  But she couldn't have been.  She sat there and ate, much more nicely than your little girl.  Okay, it was obvious we had to help her with a few things.  It was obvious, probably, that she was developmentally not where most 13 year olds would be.  But is that something that is so bizarre, so creepy, that you need to STARE ALL DURING OUR MEAL?

It's funny.  The rudest people, the people most prone to staring, seem to be the ones that have lives that on the outside look enviable.  We don't get stares much in the convenience store near our house, the one frequented by an eclectic mix of folks, few of them looking like your suburban ideals.  In fact, there and in the stores in our section of the city, Janey gets mostly smiles, sometimes hugs, sometimes high fives.  Or she gets no notice at all, which is fine too.

You could have smiled at us, even once.  You could have talked to Janey.  You could have glimpsed at her subtly, if you had to.  You could have ignored her completely.  You had a lot of options.  But the one you chose sent a pretty powerful message.

As your child whined about her nuggets, Tony and I tried to ignore you and talk.  Our conversation ambled to somehow talking about how in cartoons, if you get on a scale and you are very heavy, the pointer on the dial of the scale pops off and spins around in the air.  I said something like "whoa-whoa-whoa-whoa", imitating a spin, and spun my hands around.  Janey loved that.  She started saying it too and spinning her hands---not loudly, but hilariously.  We all had a good laugh.  We enjoyed that moment a lot.  I dare say, we enjoyed it a lot more than you were enjoying lecturing your three year old on healthy eating.  I hope you never have a child like Janey.  You might think that's a kind wish.  It isn't.  You'd be lucky to have a child as much fun, as fascinating, as beautiful and as special as Janey.  Stare at that, lady.

Sincerely, A Proud Mother

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.

Sneakers with a skirt

This morning, I put Janey in a skirt.  As I put on her sneakers with the skirt, I had one of those crystal clear flashbacks.  I was in 7th grade, like Janey, and I had worn a dress to school.  With it, I wore sneakers, Keds kind of sneakers that were floral.  At recess, a bunch of girls snickered, and one said to me in the classic "I'll going to tell you the truth even if it hurts" type way, "You really aren't supposed to wear sneakers with a dress or skirt.  I think they look fine, but other people think it looks really dumb"  I hadn't thought of that for many years.  It wasn't any huge deal---it was the 7th grade type of girl stuff, which I am sure I dished out as well as took---but it stopped me short for a minute as I recalled it.

In many ways, Janey's world and the one I lived at her age don't have many interacting points.  She doesn't live a life which is in any way at all like most 13 year olds in 7th grade.  That makes me sad, often, but I don't think it makes her sad.  The last year or so, most of the time she's seemed pretty happy with her life.  We've fallen into a routine that works for her.  She knows the steps to get ready in the morning for school, she gets eagerly on the bus, she comes home and we go to get a snack at the store, she watches some TV, Daddy gets home, we eat supper, Janey and Daddy go for a car ride, they get home, we get ready for bed, she goes to sleep.  That's her days.  On the weekend, more TV, more car rides, more watching Daddy cook, more of the same.

Janey doesn't know you aren't supposed to wear sneakers with a dress.  I guess I didn't either, but she's not going to be schooled in it.  She doesn't care.  She's not going to have many of the small moments of hurt and sadness that the teenage years bring.  She's not going to hear the news and fear from it, not going to have the arching pain of a first crush, not going to have papers or reports or projects due on a deadline, not going to worry about test grades, not going to suffer the lingering sadness of broken friendships.  There is much she's not going to feel, and I have to say---that's not all bad.  When I say I wish she could feel those things, there is part of me that is glad she won't.  Life, typical life, everyday life, has a lot of pain.  

Is it okay that I sometimes rejoice in Janey exactly how she is, that I rejoice in the parts of her that are deeply connected with the autism?  Am I supposed to only feel happy when she is able to simulate normal?  Can I feel happy that she jumps up and down and screams with joy that we say yes to McDonalds?  Can I get teary-eyed at her beauty as she wears the clothes I picked for her, clothes that might not be the style for her age, clothes that are a mother's vision of how I want her to look?  Can I be glad she will always love Tony and me with an innocence that is non-critical, that never tackles the complicated tensions that arise as a child's relationship with parents changes as the child becomes an adult?  Can I look at her, waiting eagerly for the bus, in her skirt and sneakers, with her hair done inexpertly by me, and feel joy in exactly who she is?

I hope I can.  

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.

Better Than Typical

Trying on a cape!

It's interesting that I am a lot more cautious when writing about the extremes of Janey's behavior than about the everyday parts of it.  I'm always a little wary of being completely honest about how bad or how good it sometimes gets, although I always do try to be as honest as I can.  But either extreme is something I know can be hard to read about.  I don't want to discourage those with girls like Janey when I write about the toughest times, and I don't want to discourage them by writing about the best times, either, if they are going through tough times.  However, our one night trip last weekend with Janey was so wonderful I feel like I have to share.  And what kept striking me the most is how I imagine it was far BETTER than such a trip would be with a typical almost teenager...

Last Friday after Janey got home from school, we drove out to get her brother Freddy in upstate New York, at Skidmore College where he was finished with his sophomore year.  It's a trip Tony could and has done alone, but I really felt like I needed a change of scenery, so we reserved a hotel room for Friday night.

Janey was completely happy during the whole five hour drive out (it would be three hours without any stops, but we don't roll that way).  We played music the whole time, and she rocked out to a huge variety of tunes.  I love how open she is to music, to songs she hasn't heard before and songs she's heard a million times.  If it has a good beat and is interesting, she likes it, and lets us know (as she does if she doesn't like it!).  She isn't influenced by what's cool, or not cool, or what we want her to like---she likes what she likes (which was proven by the fact one of the songs she got really into on the drive was sung by Justin Beiber, and our feelings about the song didn't matter to her!)  We all discovered we loved a song by The Lemonheads, Janey let us know she's not into Madonna, we all liked the various Nicktoons songs my Slacker Radio app picked, we had a blast.

In awe of Freddy's dorm

When we got to Skidmore, Janey was just about overcome with excitement.  We don't go a lot of places at night, being very early to bed people, and getting out in the parking lot of Freddy's dorm, seeing his dorm tower and the streetlights, taking an elevator up to his room, trying on a cape that was in a box of give-away castoffs in the dorm hall----it was like we had set her up with the ultimate night of fun and thrills.  I kept thinking about how I would have felt about such a trip at her age, or how the boys might have felt.  It's fair to say I wouldn't have been quite so excited over a long drive with my parents to pick someone up---one with no real recreation or treats involved.

The thrilling elevator ride!

Janey loved the hotel, slept well, had fun at the breakfast, was happy in the car, where she several times looked to Freddy and said "It's Freddy!" in pure delight he was with us again, requested french fries but did fairly well waiting for it to be 11 am so they would be available at a rest stop McDonalds---she was great for the ride home almost all the way, until literally the last few minutes when she was sick of driving, as were all of us.

It's funny---it somehow sometimes seems wrong to delight in the GOOD that having a child like Janey brings, and it shouldn't be.  There is much that is good about having a 12 year old that still adores us, that can get excited without self-consciousness about little things like an elevator ride or a Happy Meal, having a child that wants little more in life than family, music and fun.  When Janey is happy, we are all happy, and I am going to try to stop thinking of that with an asterick, thinking "Yes, she's happy, but although being a typical preteen might be tougher, she is missing so much..."  Well, we all are missing something.  What she is missing might be different, but what makes her happy is different too, and we can delight in her happiness without thinking of it as a "despite of" thing.  We are so lucky to have you as a daughter, Janey.

Tougher, the same as and better

Janey will be 11 soon, and I've been reflecting on what 11 is like for typical kids, what 11 was like for me.  It's not the easiest age for any girl, I don't think.  It's typically the start of middle school years, around the start of puberty and of girl on girl meanness and on starting to notice boys, the age of questioning your parents and figuring out who you are.  I think a lot about ways that life with Janey is, all at the same time, tougher and the same as and better than with most almost 11 girls.

The tougher part is quite obvious, of course.  It's a lot of what I write about.  It's tough to have a girl her age who isn't usefully toilet-trained, who is minimally verbal, who has no academic skills, who screams and bites herself when she's upset.  It's terrifying, as we found out, to have a child who can't tell you the most basic things that are wrong physically---who can have a burst appendix for days that even doctors at a top notch hospital can't easily detect.  It's sad to not ever really know what Janey's life at school is like.  It's very hard that she doesn't have friends.  It's heartbreaking that her future is not going to include marriage or a career or children.  All that is, putting it mildly, tough.

Some parts of Janey at this age are really not that different than having any almost 11 girl.  That hit me this past weekend at the beach.  Janey loves the beach, and she ran in and out of the waves and picked up shells and just had fun in a way that was truly not that different than anyone else her age.  Of course we had to keep an eye on her, but we would be keeping an eye on a typical girl that age in a public place.  Her enjoyment of the beach was not because of her autism, or despite her autism---it was just enjoyment.  When we all sit down to eat Chinese food or pizza, she is no different than any sister in a three kid family.  She grabs her share and we all gobble down.  There are moments when I look at the three kids in the back of the car and think "There's my family!" and don't think for a minute about the autism.  That might not seem like a big deal to most people, but it's a wonderful kind of ordinariness to me.

And there are the parts of Janey at this age that are better than what I think life would be like with a typical almost 11.  Yesterday after school, I put on some Beatles while I did dishes.  Janey was in the kitchen with me, and she delighted in the music.  She delighted to such an extent that she was truly in a state of bliss.  We listened together to "In My Life" 5 times, as she kept hitting repeat, and as tears came to my eyes, she hugged me over and over.  Then we danced to "Birthday", the theme song of her shared birthday with Freddy.  I thought about this birthday to come, when my baby will be 11 and her brother Fred will be a legal adult, 18.  I thought of the moments of joy with Janey, and how she will in some ways always be my sweet little girl.  The joy with Janey is pure and overwhelming when it happens.  Those are the moments that keep us going.

Bread and Salami

I read a book recently called "My Baby Rides the Short Bus".  It was a collection of essays about raising children with various special needs, although most of the kids had autism.  It triggered a lot of thinking for me, and went along with something that had been brewing in my head.

Going back a bit...In general, Janey has been much happier this week.  The medication seems to be helping, and I hope some of the new things I'm trying are helping too, like the positive reinforcement to the extreme.  Whatever it is, I am VERY happy about it.  But realistic, too.  She often has honeymoon periods on a new medication, or a new dose, or a new classroom, or anything new.  Eventually, her moods cycle around again.  But I have to enjoy right now while I can.

I wrote earlier about Tony trying to take Janey to the store and her freaking out and screaming and him having to leave with her.  When that happened, he was buying her some salami, her favorite food right now.  For the next few days, she asked for salami over and over and over, and I told her each time "We don't have any salami.  Remember at the store when you screamed?  We had to leave before we got salami.  Next time, when you don't scream, we will get salami"

A few days ago, Janey and I went to get William from work at Whole Foods.  We left a bit early, and I decided to try a quick shop with her.  She was excited.  First, she went to the area where the VERY expensive salami is, the kind I think they must fly over on its own plane from Italy every morning to justify the cost.  Luckily, that isn't the kind she likes best now.  We found the moderately extremely expensive salami aisle and got a few packs.  They are organic, uncured, no nitrates, that kind of stuff, but she just likes them because they really do taste great.  Then, we went to look for the bread she likes, a very long thin loaf with sesame seeds that is also very, very expensive (they don't call it Whole Paycheck for nothing)

When Janey spotted the bread, she dashed over to get it.  The look on her face was amazing.  It was pure joy.  She grabbed a loaf and put it in the carriage, and looked up at me with that look---the look that seems to say "Life is absolutely perfect!  I could not possibly be happier!"

Later, reflecting on that moment, I had a thought I've had a few times before.  I thought about how once in a while, Janey's autism gives us moments that we would not get with a typical kid, moments that are wonderful.  And then, because my default emotion is always guilt, I told myself "But what cost to her do those moments come at?  Should I really feel happy about moments like that when they come at the cost of so much to her?  Should I be overwhelmed with happiness that she can have pure joy over getting the bread she loves?"

And I decided---yes, I can feel happy about those moments.  They are part of Janey.  It isn't fake joy she feels.  It's real joy.  And her ability to feel joy like that is something that can only be a good thing.  The fact she isn't thinking at that moment the things most 10 year olds would be thinking,  thinking about how her mother is embarrassing her, or about what other treats she might get, or about all the many things I would have been thinking at age 10-- that doesn't matter. What matters is she has a chance to feel the moments of extreme happiness in life we all deserve.  And I rejoice in seeing her feel that happiness.

This comes back to the book I read in that I noticed that many of the most heartbreaking essays there were written by people whose kids are right at the edge of "typical", "normal" They were about kids desperate to fit in but never quite able to, kids struggling to do work at school they never quite can do, or struggling to make friends or socialize.  They were about children feeling left out and sad and feeling like they were not making the grade.

Of course, I wish so much it's hard to express that Janey was going to have a life closer to the typical life.  I wish she could learn to read, that she could get married some day, that she could have friends she could hang out with, that she could have all the things in life so many of us take for granted.  But she can't.  However, she doesn't seem to wish those things.  She isn't really at the point where she realizes what she doesn't have or won't have.  I don't know if she ever will.  Not that life balances things out---as we all learn as kids, life isn't fair.  But I am glad, in a way, she will be spared the heartbreak some of the children in the book felt.  And I am glad she can feel joy at times.  Especially after her terrifying health setback, I am so glad I was able to see that amazing smile and joy over a loaf of bread.  I will unabashedly, unapologetically treasure that moment.

Pictures sometimes lie

I love to take pictures.  It's a bit of an obsession with me.  Yesterday we went to a friend's lakeside cabin.  We were delighted to be invited, because Janey adores the water, boats and the friend.  I took a lot of pictures, and in looking at them, I thought a lot about how I sort out which pictures I actually keep and look at.

I don't save a lot of pictures of Janey when she is upset, screaming, unhappy, lashing out or crying.  There's a couple reasons for this.  Of course, I want to remember her as happy, and not sad.  Also, I've read a lot of opinions that people feel it's just wrong to post pictures of their kids when they don't look their best.  The argument usually is that it's not fair to the children.  I also, like most people, just like happy or calm pictures best.

But it's striking me lately that pictures lie.  Or they don't tell all the truth.  If you look at all the pictures I have of Janey, it would be very hard to really know her story.  I don't take many pictures of her when she's biting her arm, or hitting someone, or crying hysterically, or screaming.  I take pictures where she looks, for the lack of a better word, close to "normal"

And so, when looking at yesterday's pictures, a lot got left out.  Janey had a wonderful time most of the time, yes.  She was happy in the car all the two hour ride up, she danced with happiness when we got out, she was thrilled to "ride" in the docked rowboat, she had a great time going in a little paddle boat with her father and brother, she ran around in the big yard joyfully for a long time.  But around five, the witching hour, she lost her cool.  She screamed for a long time, and then, when I tried to comfort her, bit me, very hard, on the hand.  On the ride home, she tried over and over to bite Freddy.  We came home a bit discouraged, although the majority of the day was great.

But looking back at the day, the hard parts won't be documented.  And sometimes, I think this does our kids a disservice.  I know when thinking about my life, I don't like it to be whitewashed.  I don't want to think every single moment was joy and contentment.  Is that what we want our kids to think?  Janey's anger and sadness are a big part of her life, but by blocking that out, either through choice or from societal pressure, we are left with a sanitized view.  People would be forgiven, if they didn't look further than pictures, to think autism was an interesting and quirky variation on the norm.

I don't think I'll start taking or post more pictures of Janey when she's upset, though.  I'm not quite there yet.  But I wish that I felt freer to do so, both freer from within and freer from without.

"But there are no services for my typical kid!"

When I write about the lack of help, especially respite, for Janey, an argument pops up a lot.  It's not so much one that anyone has the guts to SAY to me, but one I know people, people outside our autism tribe, might be thinking.  It goes like this "Why should you get help with your daughter?  I have a kid without any special needs, and nobody is helping ME!"

When I hear this, I laugh.  A deep, ironic, non-funny laugh.  Because of course the typical child gets help, and of course the typical parent gets respite.

Let's start right in my own neighborhood, in fact, within walking distance of my house.  I live in a working-class part of Boston.  Not a fancy suburb, just a regular type place.  And if Janey had no special needs, here's the respite I could get at low or no costs...

A community center that holds camps during all vacations, for very low prices

A YMCA with camps, Saturday programs and all kinds of activities

A small theater with vacation and summer programs

A summer program to learn tennis

Summer programs at several nearby school, with academics and field trips

Dance classes, with camps

These are just the ones I can think out without a bit of research.  During a typical vacation, I could choose from lots and lots of places I could walk, and could afford.  I could drop Janey off there and have a whole day to myself, while she had fun with other kids.  And if you think these programs aren't subsidized, think again.  They are heavily subsidized by the city, or by the Boston schools, or by donors.  They are available to anyone.  Anyone but someone like Janey.

Now, if we open it up to the city at large, there's hundreds, probably thousands, more possibilities.  There's the Saturday program I've so often mentioned, for "special needs" kids.  Not Janey, because they have to be able to handle a 4 to 1 ratio.  There are music programs run by the school district, absolutely free summer programs, all day camps.  There are a huge number of programs at community centers.  There are nature camps run by the Audubon Society.  There are so many choices, choices I could actually afford, that I would have a hard time picking.

And what is there for Janey?  There is nothing.  She gets summer school, the incredibly shrinking summer school, which becomes less weeks and less days a week each year.  She goes to regular school.  That is it.

It is an ironic, sad thing that the families most desperately in need of some respite are the same families for which there is none.  So don't say for a millisecond that your typical kid doesn't get services, doesn't get help.  They do.  We live in a society, despite anything anyone might want to think, where Janey is excluded from so very much by her disability.