Advanced "Welcome to Holland"

I had a rough day yesterday while Janey was at school.  It had nothing to do with her---it involved worry and doctors that don't call back and midlife frustrations and general malaise and so on and so on.  She came home and lifted my spirits immensely.  She had such delight in the everyday afternoon and evening activities---having some cheese as a snack, walking to the ice cream store, hearing music on the way back and dancing, seeing Daddy come home, getting some Chinese food for dinner---it was great.  She even made us laugh with a new phrase.  She asked Tony for a ride and he said "Sure!" and she said "Are you joking me?"  She was a delight.

And for a brief moment last night, as I thought about it all, I was thinking how although she is very different than most 12 year old girls, there are many parts of who she is that are lovely in their differences.  She loves us wholeheartedly.  When Tony got her off the bus instead of me on Wednesday, upon seeing me when I got home she gave me a huge hug, just thrilled to see me again.  She has fun with very small pleasures---a song she likes, a trip to the ice cream store or McDonalds, a video that she's seen over and over.  She doesn't long for what she doesn't have---she isn't asking for Ugg boots or a North Face jacket or whatever else is in right now (and those might be totally out---I don't know, and that's part of it!)  For a minute, I was thinking "it's a different life, but it's a good life!"

Then it hit me---wasn't that awfully like what "Welcome to Holland" says?  Welcome to Holland--a well meant story written by a kind and caring mother about her specific circumstances that has turned into something tossed to every special needs parents as a way of saying "Quit all your griping!"  Of course I am being a little sarcastic there, but that's often what it feels like, like a way those who have never lived the life can say "What's the problem?  It's not the same as most lives, but it's just as wonderful in its own way!"

And I felt angry, really angry.  I felt angry for many reasons.  The big one was that having an afternoon like yesterday with Janey wasn't something that just happened.  It has taken many years to get to where we sometimes are today.  It has taken the dedication of many people---Tony and me, yes, but also many other people---all the people in the Boston Public Schools who have worked with Janey over many years (and they are an amazing bunch of people), the doctors and psychiatrists who have helped us find what seems like the right combination of medications, Janey's brothers, the people in the Hyde Park community like our neighbors and store workers who are happy and excited to see Janey no matter how she acts, my friends, both those I know in person and those I have met virtually, who give me ideas and support and love, the wider autism community who has shared their experiences and advice----it's taken a huge amount of people and work and knowledge to get Janey to where she can have an afternoon like she did.  It didn't happen just by somehow arriving in the wrong country and accepting that I was in Holland and not Italy.

We like feel good stories.  We like happy endings.  What we don't always like is hearing that it takes work, it takes money, it takes resources, it takes tears and false starts and dead ends and heartbreak and sweat and dedication and so much more to get to those happy endings.  And they aren't endings, really.  I've read about something called the "end-of-history illusion".  We as humans often feel like the stage we are at right now is the evolved, end stage.  We see work and change and developments in the past, but we sort of assume the future will be steady, that we have done the work and now we just sit back and reap the benefits, and that is of course not true.  The future will hold as much work and as many changes as the past, most likely.

Our society is set up for people to travel to Italy, not Holland.  A trip to the special needs world is not just a different trip, it's one where none of the guide books help you, one where you have no hotel reservations, one where before and after the wonderful moments you might have, there are many times of confusion, frustration, fear and despair.  There are kind people in Holland, amazing people who do more than you would ever expect to help you, there are beautiful sights, but don't let anyone tell you that it's just another form of Italy.  It's not.

800th Post!

Eight hundred posts.  Wow.  That's over eight years, but boy, do I like to write a lot, and ramble on at times, and most of all, have all of you to talk to and share lives with.

I thought, for fun, my own fun anyway, I'd look at each 100th post---the 100th post, the 200ths, etc., and see what they were about.  So here goes!

Post 100---"Crying Day"

Okay, that's not a cheerful one to start with.  It's about a common theme---Janey's crying.  She was 5 and a half then, and I was discouraged, and dissing the Holland story.

Post 200---"Toys"

Another theme I hit on fairly often---how it's hard to find toys for Janey, and what kind of toys she does like.  I think I obsess over this a little, as I did here when she had just turned 7.  I like toys.  I love toys, maybe, and sometimes the hardest things to feel at peace about with autism or I think any special need in a child are the things you looked forward to sharing with them that are never going to happen.  Janey's not going to beg me for an American Girl doll, or the latest Shopkins, or anything like that, and I don't think even now I'm quite resigned to that.

Post 300---"Why is the Crying So Hard?"

Another crying post!  This time, I was trying to figure out why crying in particular is something I get so upset by, and just can't ever ignore.  Janey was seven and a half here.

Post 400---"Another Day, Another Book"

A little different!  I love to read, and I do a lot of book reviewing, and that other life snuck into the blog here, in the form of an autism memoir.  I don't read as many of them as I'd think I would---I think I need a break from autism when I read, most of the time.  But when I do read a book about autism, I usually write a blog post about it.

Post 500---"Good Night, Daddy!"

A cheerful one, for a change, about Janey telling Tony good night totally on her own.  She was eight and a half.  Whenever something like that happened, you can tell on the blog that although I'm trying not to get my hopes up, I'm still hoping it's the start of a big new change.  I guess it's good not to give up that hope, but now I do try to enjoy those little moments on their own, without projecting what they might mean for the future.

Post 600---"Letting Go of Janey's Hand"

Written when Janey was nine, this one is about the baby steps I was taking toward letting Janey walk without holding my hand all the time.  Unlike the talking breakthroughs, this one has lasted.  Janey really doesn't bolt any more, and I feel pretty safe letting her walk without holding her hand, even on the sidewalk of our busy street.  It's nice to read back about when I started doing that!

Post 700---"What it's like to visit a psychiatric hospital"

Well, that's not an uplifting one.  I wrote it last December, when Janey was 10 and was an inpatient at Bradley Hospital in Rhode Island.  I wrote this one partly just for myself, to remember what the visits were like, and partly because I was so unprepared for the whole hospitalization time.  I hoped (and hope) none of you ever have to go through that, or go through it again if you have before, but if sometime in the future you did (and it happens more than I ever realized), I wanted others to have a little bit of an idea what it was like.


And here we are at post 800, sort of a clip show post!  It's been a long, strange last 8 years, the eight years since Janey was diagnosed at age 3.  I can see me writing post 1800 some day in the future.  Autism is lifelong, and I will write about Janey until I am no longer able to.  I hope that is a long time from now.

Sixteen non-sentimental autism truths

No trips to Holland here.  No Hallmark moments.  No miracles.  No breakthroughs.  No shiny rainbow sparkly sentiments.  Just the truth (as I see it)


1.  You can get by on very, very little sleep if you have to.  Coffee helps.

2.  Don't worry too much about what your kids eat.  I can say from experience kids can eat food off the floor, bites of paper towels, duck sauce, pickle juice like a drink and random car crumbs---all in the blink of an eye when you turn your head---and be just fine.

3.  Kids' videos are boring.  Even the better ones are boring after you see them 100 times or so.

4.  You can learn to clean up "toileting accidents", the kind that would make most people sick for days, with barely a thought after doing it for five or six years.

5.  Don't get too attached to any of your kid's clothes.  They will be chewed on, stained up and ruined very soon.

6.  The things you dread the most will often turn out to be the easiest to deal with.  The things you never thought would be a problem will very often become huge disasters.

7.  People like to stare.  They love to look at any child acting odd.  They don't try to hide it.

8.  There will be a point at some time in your life when you will feel like punching someone for talking about their child's C in math or failure to make the elite sports team.

9.  You will argue with your spouse about petty, stupid, meaningless things, and that argument will turn into a screaming match.  You'll do this because you can't argue with your autistic child, and goll dern it, you need to argue.

10.  You will have very little social life as a family.  People don't invite you back when your child screamed for hours last time you visited.

11.  You will look forward to the first day of school like 10 Christmases combined.

12.  You will have daydreams of your child asking for every toy they see at ToyrRUs, because that involves talking and having typical child wants and desires.

13.  You will at one time or another buy something overly expensive (a therapy toy, an app, a supplement, a piece of electronics equipment) because you've read about the wonders it does for autistic kids.  You will wish that money back.

14.  You will eagerly analyze anything in your child's backpack for the slightest hint of what they did all day at school.  No matter how much information your child's teacher gives you, it will not add up to a tenth of what a typical kid tells you about their day, even if the typical kid is a surly teenager.

15.  Birthdays will be tough.  People asking you what grade your child is in will be tough.  Seeing what other kids the same age as your child can do will be tough.  Heck, a lot of things will be tough.

16.  You will delight in accomplishments that most parents wouldn't even notice.  You will be in tears of happiness over words or gestures or smiles that typical parents would take for granted.  You will have moments when you realize that the child you have is perfect.  Those moments will be fleeting, but they will be so very, very sweet.

The week I won't forget

This past week, this past 5 days, really, have been insane.  Insane in that at least six huge happenings have hit me, ranging from very good to very bad.  I hate being vague here, but most of them are outside of the scope of this blog, or not my story to tell, or not something I can share for whatever reason, but it's been all over the map, starting with Janey reading and including hugely unexpected family news, unsettling health news, a great surprise present, others besides Janey needing my help and moral support and more.  It hasn't been a week I'd like to repeat, partly because I like slow and steady.  I don't like surprises or unexpected news, even good news.  I am left tonight feeling a "what next?" feeling, and I hope the answer is "nothing next".

And in writing this, I might have a partial answer to a the WHY of one of the tough parts of the week.  Janey has started being very aggressive at school, lashing out in physical, unacceptable ways.  It's horrifying to me.  It's literally nightmare-inducing, lots of nightmares night after night.  It's possible she is reacting to all the turmoil that I would have liked to think I kept hidden.  Nothing that has happened has resulted in outward scenes at home or a change in her routine, but I have been distracted, overwhelmed---and Janey always know more than I think she knows.  Perhaps she's reacting to that.

Or perhaps not.  Talking it over with Janey's wonderful teacher, we both were frustrated by the lack of a pattern to Janey's outbursts.  Looking at things from a behaviorist point of view, you want to think that if you can understand the reason why, you can avoid that situation, or work on that situation.  But Janey sometimes truly seems to do things out of the blue.  She can be seemingly as calm as can be, when suddenly, WHAM---she's lashing out.  It's scary to see.  It happens at different times of the day, aimed at different people----kids her age, younger, older, adults---it doesn't seem to have a pattern.  It seems to come from within.

I hope, like so many of Janey's moods and stages, this one passes soon.  I hope it isn't replaced with a crying all day stage, or a screaming all day stage, or a lethargic, progress-erasing stage.  I hope a lot of things.  It's one of those nights when I can't keep up the positive attitude I try so hard to keep up.  Autism is tough, folks.  It might not be in vogue right now to admit that, and there are days when it's not as tough as others.  There are days when it's almost the dream you want---an alternative kind of normal, a different but still great trip to Holland.  But today isn't one of those days.  Today it's a scary, unpredictable and tough ride.

These Happy Golden Moments

The title, of course, is a modification of one of my favorite book titles, "These Happy Golden Years" by Laura Ingalls Wilder.  I hope some day I'll have a whole golden year, but for now, golden moments are enough, and last night, I had two of them, the kind of moments I think of in my head as movie-ending moments---moments that if you wanted to show a happy ending, you could freeze my life at, and you'd have one.  Life doesn't freeze like that, but that probably makes the moments even more of a treasure.

Movie-ending moment one----Freddy and Janey are playing in the back yard.  Freddy is fooling around with a long stick---balancing it on one hand, and then one finger.  Janey is watching him with admiration, really paying attention to him, with the kind of look that younger siblings get when their older siblings do something that looks amazing to them.  I am sitting watching them.  The sun is low in the sky, and it hits a point where it lights up both Freddy and Janey's hair---Freddy's curly mop and Janey's blond straight tresses.  For an instant, they both look like they are lit up from within, a flash-bulb scene of childhood and happiness.

Movie-ending moment two---Janey comes up to me and says "Do you want teat?"  I am surprised.  We are mainly coffee people, although we have tea on occasion, and I had no idea she knew that word.  I ask her to show me the tea, and she goes to the kitchen and first points to the cold coffee in the coffeemaker.  I say "Oh, you want coffee?" and she then points up to a high shelf, where weeks ago we put 4 small teacups she had picked out at the thrift store we loved, bagged together.  We had washed them but then put them out of reach, as they were delicate, and hadn't mentioned them since.  I get them down, and she eagerly takes two and puts them on the table, and leads me back over to the coffee, saying "Would you like some tea?" and finally the dense me gets it.  She wants to have a tea party.  I pour some cold coffee in both teacups, and she hands one to me, politely saying "Would you care for tea?"  I take my cup, she takes hers, and then raises it to me and says "Cheers!  Salute!"  We toast, and we take a sip---hers not actually reaching her mouth, as for the first time, we are playing a pretend game.  We are having a tea party.  And I am crying.

When you first realize that you have a child with significant disabilities---which is different than when they are diagnosed, as it's the moment it becomes real, the moment you realize they aren't going to ever be "cured", the moment you see that you have taken a very unexpected turn and are indeed headed for Holland instead of Paris---you give up a lot of dreams.  I'm not afraid to say that's hard.  I don't dream of Janey getting a high school or college degree.  I don't dream of her getting married, or having my grandchildren.  And for a while, that can feel like despair, like a life of giving and not ever getting back.  A perfect mother would say that's what a mother should do, but I think in real life, every mother dreams of the moments that seem like rewards.  I am here to say that those moments do happen with children like Janey.  There are wonderful moments, Happy Golden Moments, and they are as sweet as moments can be.

My autism resolutions for 2013

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

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

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

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

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

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

Early on Thanksgiving Morn

I had intended to write a post about all I am thankful for today.  That's the traditional Thanksgiving thing to write, and I am certainly thankful for much---wonderful people in my life, great schools, an amazing family, music, books...many things.  But somehow that post was not getting written today.  Last night was tough, not just with Janey but with all three kids---lots of emotions, parent vs. child expectations for family togetherness, the holiday stress, medical issues---it was a hard night.  Not that I'm not still thankful as all get-out, but I thought I'd write a more specific post---about Janey, about being thankful for her.  And I am---with all the challenges she brings, I am hugely thankful for her.

Where to begin?  Maybe when I found myself a bit surprisingly pregnant in my late 30s.  Not that we don't have an idea how people get pregnant.  Not that we didn't realize you don't have to be actively "trying" to get pregnant, just a little not careful.  I won't get TMI (for you older folks, that's Too Much Information) on you here, but finding out on the day after Christmas 2003 that we were expecting child #3 was a big surprise, and a happy one.

And then of course, leaving out all the extremely tough parts of the pregnancy, there was that amazing moment when I got the call about the amnio, the news that we were going to "get our girl", as lots of people put it.  That was one of the peak moments of my life.  I loved having two boys first, but we were ready for a girl.

Leaving out again the hard parts of her birth, the moment I first laid eyes on my Jane was another flashbulb memory, an wonderful one.  She was unexpectably very blond, very light and so, so beautiful!

As Janey grew from beautiful baby to adorable toddler to amazing little preschooler, we had three years without autism.  There might have been signs, but they were subtle enough that early intervention (who saw her because she didn't walk until she was 2), her pediatrician and many other eyes didn't catch it, even though we knew she was at high risk.  I have buried a lot of memories of these early years, and I wish I hadn't.  She was a quirky but fascinating little tiny girl, one who delighted us greatly.

And then the regression.  And the hard years started, the years that continue on.  But still---so much to be thankful for.  Through all Janey has been through, she has retained some amazing traits.  She is physically very graceful---the athlete Tony didn't really get with his boys.  She laughs like no-one else.  She surprises people constantly with her affection, which cannot be bought or bargained for, but is given like an award to those who have earned it.  She adds to our family in so many ways.

I am grateful in a special way for Janey's love of music.  We listen together to songs every day in the car, on the computer, everywhere music lives.  She knows what she likes, and when she loves a song, and we look at each other in amazement at the glory of her favorites, it's the purest, most heart-felt connection I've ever felt with anyone.  It bypasses the autism in her and goes right to the part of her brain that seems to have been never touched by the autism storm.  We connect as equals, or as her my superior, in our love of the music that touches us.

I am thankful I have been given Janey.  She was not the result of a trip to Paris rerouted to Holland.  She is a destination of her own.  For all the challenges, the tough days, the tears, and I will never pretend that there aren't many, I am still thankful beyond my ability to write for Janey, the real Janey, the endlessly frustrating, endlessly challenging and endlessly amazing daughter of mine.

Easy ways to avoid having a child with autism

So you are thinking of having a child, and would like to have one free of autism? Well, you've come to the right place! I've got your easy plan right here! Just follow these instructions and you might well become the lucky parent of the latest autism-free model child!

First of all, you need to make sure you are creating this child with the right person. Take a good hard look at both your pedigrees. Is there anyone with autistic-like tendencies there? Any secret Thomas-the-Tank-Engine lovers? Genetics is one of the possible causes, you know. Assuming that every last one of your ancestors are free from any suspicion of secretly autistic traits, then take a look at the age of the male of your couple. It's a rare case where the woman seems off the hook, but if the male is an older father, it's thought that almost all the new weird genetic mutations that might lead to autism come from his side of the contribution. So you might want to trade him in for a younger model. The other factor you want to check both sides for is the presence of autoimmune disorders, which might play a role in autism. Any diabetes, asthma, arthritis, thyroid disease, lupus, MS, stuff like that? No? All set there? You are ready to get pregnant!

Now there are just a few rules you must follow when pregnant. First of all, don't get sick. Fever during pregnancy is thought to be a culprit. It might be good to isolate yourself all during pregnancy to avoid that. Next, look long and hard at medication you might take. Ask your doctor. Your doctor might say whatever you are taking is just hunky-dory, and then a few years later it's discovered that it isn't. But doctor's orders! So if you take any medication at all, you might want to go back a step and not get pregnant to start with. Avoid being overweight. Avoid getting pre-eclampsia. Avoid being stressed. Avoid getting pregnancy-induced diabetes, or any thyroid problems. Just to be safe, have a picture-perfect pregnancy in all ways.

Now---during the birth. Don't have any birth trauma or lack of oxygen. Don't have your baby prematurely. Hold them right away and let them know how welcome they are. Most people don't believe autism is caused by "refrigerator mothers" subconsciously rejecting their babies anymore, but you know how those things swing back and forth, so avoid ever thinking a single negative thought about the baby.

Now it gets tricky. There's the vaccine question. Science doesn't seem to back up that vaccines or mercury in vaccines cause a problem, but many mothers and blogs and celebrities think it does, so you'll have to decide on that. Make sure the baby doesn't get any infections soon after birth, viral or otherwise. Some people think lately autism is caused by an over-clean environment not teaching the body some early immune responses, so be reasonably casual about germs, but of course, that's subject to change at any point, and if it's later decided dirt causes autism, you'll never forgive yourself. Lack of vitamin D is one theory, so live in a sunny climate. Too much rain could be a problem, so if you get hit with some long rainy spells, move. There's the whole possible diet connection, with lactose and gluten being suspected as problems. Who knows, but why not just never serve any of them to be sure? Early TV could be a problem, so get rid of your set.

And of course, if your child STILL is stubborn enough to show even the slightest autistic trait, you want to nip it in the bud. Have your child screened for autism starting at birth, probably every week will be enough. If you see the slightest sign of it, start ABA about 100 hours a week immediately, until your kid is so normal they could be a model for normalness.

And you know of course this is all very tongue in cheek. I've just been reflecting a lot lately on how the almost daily new ideas about what causes autism must put through the heads of someone determined to do all they can to give their kids a good head start, a nice autism-free life. And the moral is, of course, you can't do that. You could do everything possible known right now, which would result in some crazy doings, and in a few years, it could be determined that everything you thought right was wrong. We just don't know what causes autism. There probably isn't any one thing that causes it. So do what you feel is best. Do what you yourself decide is healthy and reasonable to do. Listen to a good mainstream OB/GYN or pediatrician. Use your own judgement. Don't listen to what bloggers say, including me.

And if, all else failing, you do end up with an autistic child, I'm here to say it's not the end of the world. You aren't a terrible person for somehow not being able to prevent that happening. You are a parent that like many parents from the beginning of time, were dealt a tough hand, but you will deal with it. Your child may not take you to Holland, but they will give you moments of extreme joy along with the hard times. Congratulations on your child, autistic or not.

The Toll on Siblings

I read an article yesterday from The Washington Post about siblings of children with autism (you can read it here), and I was struck by the honesty of the opening section--- a sibling recalling one of the tough moments of life with an autistic brother, and then trying to write the inverse, one of the good moments, and not being able to think of one. That's brave. I think the media subscribes to the same mentally that is taught to us as kids---if something is very tough, you will get rewarded for it. You'll be better off in the long run for having endured it. There are all kinds of hidden compensations. Welcome to Holland for kids. And that's not necessarily the case.

I'll start by saying I do think in some ways, my boys have been enriched by having Janey as a sister. They certainly have compassion for the less able, they have learned responsibility, they feel needed as part of the family unit. And there are those once in a while moments, which they express by taking Tony's and me phrase "Janey's being precious!" They appreciate it when she's being adorable or funny.

But overall, I have to be honest and say that that negatives outweigh the positives. We don't have a normal family life. We can rarely have family outings. We next to never eat out as a family, and we NEVER go as a family to movies, or other such public events. Every single plan must include figuring out what we will do with Janey---can she tolerate it for a few minutes? Who will watch her? Our time is hugely taken up by her. Countless times, the boys need Tony's or my attention and don't get it, or get us saying "Wait till Janey's asleep" They are often called upon to keep an eye on Janey, which is not a casual task---it takes them away from homework, talking with friends, pursuing hobbies. If it's for any extended time, we pay them, but the pay is low for how tough a job it is. We can never, never count on a relaxed family time. It's always dependent on Janey's mood. Our money is limited by the fact one parent must always be there for Janey. There is not a single aspect of our lives that are not affected by Janey's needs.

The article tries to be positive. It says studies show siblings do better in certain situations---in two parent families, when the autistic child is higher functioning or the oldest child, when the family has more money. Those all seem like common sense. I cannot even picture the life of a single parent with an autistic child and a sibling. More money, like it or not, can make almost anything easier. But overall, the article has to admit it's not a Welcome to Holland reality for the sisters and brothers.

And then there's what is hardest to face. Some day, Janey will be William and Freddy's responsibility. They will be responsible at least for making decisions about her, and at most, she might live with them. That's not something I'm forcing on them, that's reality. It's the unspoken truth for many families with a disabled child. They didn't sign up for this. Tony and I did, by having a child. Every time you have a child, you are signing up for whatever you get. I do believe that. It doesn't mean I am going to always be positive about it all, or not rant at times about how unfair it all is. But we chose to have a third child, and she is ours. The boys didn't have a choice.

I wish I had a feel-good conclusion here. I don't. What I am left with is reality. As much as we might believe in the fairy tale idea that it all balances out, that we are all rewarded for our hardships, that we in Holland just are on a different but equal vacation, when it comes to siblings, I don't think that is the case. So I'll just say thanks to William and Freddy. They are amazing boys, incredible boys, doing a wonderful job in life. They are great brothers to Janey. I can't promise them riches or rewards due to that, but I can thank them with all my heart.

An hour's worth of Janey thoughts

1. We are in the car, driving to a Barnes and Noble about 20 minutes away, to get a book for William. I put on my iPod to my big list of assorted songs, and Janey loves that. We have it down---if she likes a song, I repeat it until she stops asking. Today's repeats are "Leaving on a Jet Plane" and "Baby's Got Her Blue Jeans On". It strike me as it has many times that when we listen to music together in the car, we are both happy on the same level. There's no autism between us. We both love to hear what song comes on next, to enjoy a catchy tune. She's my dream music-listening friend.

2. At the Barnes and Noble. I've found William's book and we head to the kids' section, to see if there's a Yo Gabba Gabba book. There isn't, but Janey is happy there for a while. A little girl is dancing on the small stage there, and Janey gets up and dances with her. The girl looks happy, but her mother I think quickly sizes up that Janey isn't "right" and calls the girl away. Another mother is reading to her obviously very bright little toddler. As Janey makes her sounds and flaps her hands, she gathers the boy in tight and then leaves the area. I think how they are reacts to Janey like many of us react to being around someone obviously mentally ill. We are too polite to stare or comment, but we don't leave ourselves open to somehow be caught up in the scene. Although we know logically it's not catching, a part of us still acts like it is. It's very isolating. And I can't help but feel hurt.

3. A few minutes later. Janey runs from me, holding a train from the train table. I yell "JANEY! STOP!" but she doesn't. She runs across the store, luckily not out into the connected mall. She hits a dead end, and I catch her, we walk over to put the train back, and I lecture her and tell her we have to leave now because she ran away. She has her "wild" look on, and is laughing a lot. I think how she probably enjoys the few seconds of freedom, the once in a while being out there without holding a grown-up's hand. And how it can't happen. And what that all means.

4. The cashier smiles at Janey as we buy the book, and says "You look very happy today!" I think about how much little things like that mean to me now, how much I appreciate kind words and friendly smiles.

5. We are in the car home. I think "pretty successful trip", my mind editing out the running away, the parents acting protective, all that. The bar is fairly low for successful trips. I think then about my daydream daughter, the one I had mentally before Janey. We would have looked at all the books, talked about what she wanted to read next, bargained over how many she could buy, debated library vs. bookstore. In short, she would have been a little me. And of course, even if Janey wasn't Janey, that was just a dream. But then, as we listened to more music, I thought about how my daydream daughter and I had never listened to music with the intensity Janey does. I told myself I was getting all "Welcome to Holland", and I laughed out loud. And Janey laughed too.

The Club

As I was walking Janey into school for her last day of 1st grade, I saw a boy I've known since he was a baby, looking very handsome in a suit, getting ready for 5th grade graduation. Then I talked to a mother of twins about her summer plans. After I dropped off Janey, I saw the old principal of the school, and had a good talk with him about the boys. As I was walking to my car, I talked to a few other members of the school staff about their kids. What do all these people have in common? They are all members of the club---the club of those affected by serious disabilities. From the boy with Down Syndrome to the twin in a wheelchair to the principal who is blind, they all are members. And today, for one of the first times, I had a feeling of pride in also being in that club.

Of course, in a lot of ways, pride is a strange thing to feel. It's not a club anyone tries to join. The membership fees are incredibly high. The initiation rites can be life-threatening, heart-wrenching. The meetings don't occur often enough to keep members from feeling incredibly isolated at times. There are not a lot of facilities for us, not a lot of perks or parties or benefits.

But it's all about the members. The members I have met are some of the most remarkable people on this earth. They have struggled for everything they have, for their children or themselves. Contrary to what many would think, they are also funny, happy, cheerful people much of the time. In the popular text talk of today, they absolutely get that YOLO (you only live once). They don't feel sorry for each other or for themselves, for the most part. But they get it. They get each other's lives. They celebrate each other's triumphs, and cry each other's tears.

As I talked to the people I talked to today, I realized I didn't talk to any of them about disabilities. We had some laughs, talked about summer plans, said some goodbyes, caught up. I left the school feeling as I often do after being there---on a bit of a high. As I saw yesterday, not everyone in the world gets what our club members go through. There are many that aren't in the club that do, and in fact many of them, especially the teachers and others that work with our kids, are more than honorary members. But like all good clubs, we have our rivals---those who make fun of us and ours, belittle us, are annoyed by how we might change their routines or talk oddly and loudly or just plain remind them of something that for some reason they don't want to be reminded of. That's part of being an exclusive club, I guess.

I'm not going all "Welcome to Holland" here. If I could go back and refuse membership to the club, I would. But membership, once you are chosen, isn't optional. I'm a lifetime member, and there's nothing I can do about that but be proud to be in a club with some of the most amazing people in this world.

"Welcome to Holland" and autism

If you have anything to do with the special needs community, you have probably been given the "Welcome to Holland" story by some well-meaning person. On the off chance you don't know what I'm talking about, click here.

Usually, when I mention that story, I preface it with "stupid"---the stupid Holland story. I read it over this morning, and that is probably unfair. It's a very well done analogy, for some situations. I just don't think it applies well to autism.

Part of that is that you don't find out with autism right away that you aren't in Italy. You are handed a baby who in most cases seems perfect. It's like you are actually in Holland, but in some Disney type imitation of Italy. You THINK you are in Italy, you start seeing the sights of Italy, and gradually, you realize you're not actually in the real Italy. By that time, you've already made all kinds of Italy plans, restaurants and sights and sounds you are going to see.

The other part is that I feel autism isn't another country. It's not an alternative life. It's the same life, with something taken away. Here, I am talking about lower functioning autism, as Janey has. I know with high functioning autism or Aspergers, there are many people who live wonderful lives---lives outside the mainstream, but very happy and meaningful lives. But I can't help but feel in Janey's case, autism has taken away what she was meant to have. There are wonderful things about Janey, but I think she would have those traits without the autism. She would still be musical, but she might be headed to a career in music. She would still be quirky, but able to explore the varied ideas and thoughts her quirkiness lead her to. Autism hasn't taken us to a different but equal country. It's taken away. I can't accept that a life where Janey cries for hours because she can't explain what is bothering her, where she will most likely never experience the joys of love and marriage and a family, where everything will always be a struggle, is just a different but equal vacation in Holland.

Yes, our personal mis-booked vacation has lead us to meet some wonderful people. It's opened my eyes to a world I wouldn't otherwise have found. But all in all, I find the Holland story as applied to autism to be paternalistic and condescending. It's above all a story about a parent's viewpoint. From Janey's viewpoint, I'm pretty sure if she could say, she'd want to go to Italy if that is where she was booked to go. She'd want the life that most of us take for granted.

What causes autism? And does it matter?

Well, of course it does matter, but by that, I mean does it matter to children and families already living with autism? It certainly matters to those future children who could potentially be prevented from becoming autistic if we knew what was causing it, but in a lot of ways, it doesn't matter much to Janey, or to me, in terms of our day to day life.

That's not to say I don't wonder, but I can't say I think a huge amount about it. That's been hard lately, as every single day, it seems, there's a new article out there with a new potential cause. They can't all be right, or maybe they can---I do think autism is caused in different ways in different kids, and they might ALL be a cause. But that leaves more answers than questions if it's true---which one caused MY child's autism? And it opens up the feeling that I think probably almost all parents of a child with autism have had---"it's my fault somehow" I know rationally it isn't. I don't take the credit for Janey being so beautiful, or my sons being quite the bright guys, or for William being musical or Freddy being a good actor. I don't take the blame for Freddy's health issues or any character flaws either of them might or might not have. So it stands to reason I shouldn't take the blame for Janey's autism, and in general, I choose not to.

But the list goes on---genetics, vaccines, older fathers, close spacing between children, overweight mothers, medication taken during pregnancy, mercury, thyroid problems during pregnancy, pre-eclampsia, ultrasounds, low birth weight, lack of oxygen at birth, diet, autoimmune disease, viral infections, brain defects, rain, too much TV, Tylenol...well, a huge amount of things. A fair amount of the list applies to Janey, making me think it would probably have been more of a surprise had she NOT been autistic, almost. But of course that's not the way to think, and it shows the problems with a lot of those theories---why don't ALL kids with those risk factor become autistic? Obviously there must be more than one factor at work in most cases.

If I personally had to guess about the cause of Janey's autism, at the current time I'd put three factors in the most likely list. First is the autoimmune disorder idea. Almost everyone on either side of our family has some kind of autoimmune problem. This goes along with factor two--preeclampsia. I was severely affected by this during my first pregnancy, and was to a fair extent while pregnant with Janey. My third thought is the severe reaction I had to a blood pressure medication I was given at 12 weeks while pregnant with Janey. These three factors all tie together. But who knows, really? I think most of autism is probably like that---caused by an interaction of factors. This is why I try never to get into the fray of arguments about what causes autism. I think everyone is right and everyone is wrong. Some cases of autism probably are caused by vaccines. Some are caused by genetics, some by birth injury. Most by a mix and match list of many factors.

But the end result, no matter how you get there, is autism. It's like the stupid Holland story. No matter why you ended up in Holland instead of in whatever country you were aiming for, you're still in Holland. I'm content to let the research and battle over what caused Janey's autism fight on without me joining in. My fight now is to give her the most meaningful life I can.

Think about what you CAN do...

This morning, Janey was watching a show she likes, Ni Hao, Kai-Lan. There is a little social message to every episode, and this one included a song to illustrate the point "Don't think about what you CAN'T do, think about what you CAN do!" It made me think about what Janey can do, and reminded me to be grateful for those things.

She can walk---there was a time when she wasn't walking at nearly two years that we weren't sure that would happen. She can see and hear---very well, from what we can tell. She can eat and breathe on her own---I know kids that need help with those things. She can talk a little---not every child with autism functioning at her level or higher even can talk at all. She can hug us and smile and be happy. She can express her needs and wants on a basic level. She can sing and enjoy music. She is healthy. She can dance and jump and splash in puddles. She can look at books. She can pat our cats. There's a lot she can do.

Now, don't worry, I'm not turning into a happy, cheerful, everything is a blessing blogger. That's not me. But from being part of those on the slow boat to Holland (if you travel with me, you know what that means), I've gotten to meet a lot of families with kids that have a lot of different abilities and disabilities, and I know very well that I have a lot to be thankful for. As my friend Maryellen said when I talked to her about this today, that doesn't mean it's easy, or make it easier, but it makes me keep in mind the things I need to never take for granted.

Crying Day

Janey is having one of her famous cry all day days. We don't know why. We've tried all our tricks---feeding her a lot, giving her a bath, me just holding her, etc. It doesn't help that I've been sick for days, and at one point when I was holding her and she was starting to calm down, I started coughing my head off and then throwing up. So that didn't exactly work. Tony has taken her now in the car to pick up Freddy from a party he is at. We are giving a friend of his a ride home, and I guess the friend will get a baptism in fire in autism education. It's an awful helpless feeling when she get like this, for her I am sure and for us. She might be getting sick like I am, but she has no way of telling us that. It's one of those days I don't feel particularly equal to this challenge. I just want to rest and get better, but I can't. William was trying to complete an important application for a summer program, and he could barely hear himself think. It's one of those days I hate all those stupid saying like God doesn't give you more than you can handle. If God handed this out, I think He might want to rethink His method of judging what people can handle. Or the Holland story---if I ever book a passage to France or England or Italy, I better end up there and not in Holland. Holland might be fine, but at this point, I need a vacation and it better be to where I want it to be (if you don't know the Holland story, look up Welcome to Holland anyplace on the internet and you will find the sappy tale) I get feeling guilty, like I don't want Janey to be who she is. But that's not it. I don't think anyone wants to be sad and voiceless. I want her to have a fair shot at life. I want her to be able to tell me why she's sad, and let me try to fix it. And I want the rest of us to be able to live a life where we are not on eggshells all the time, and where there is a day in sight when we can have kids that are grown up and on their own. This is a lifetime thing. It's never going to happen. So some way or another, I have to make the best of it, for all of us. And most days, I think I can, but right now, I am not sure.

When do the compensatory rewards start rolling in?

I think for many years in life I really did feel like if something went very wrong for you, somehow there would be rewards or treats or compensations to balance out the wrong. I think it's because when you are a kid, that sort of happens---if you get very sick, you get some treats like soda you wouldn't otherwise have, if you miss a party at school, you might get a treat at home, if you cry because your sibling gets to go someplace you don't get to go, you might get to do something fun at home. I don't know why I thought adult life would be more that way. I guess it still hits me all the time that it just isn't. Maybe that is where the whole stupid Holland story comes in---you have a child with a disability, and things won't be what you expected, but you will get this whole OTHER bunch of great rewards----meeting all kinds of interesting new people, taking joy in every little achievement, etc. Well, I'm here to say right now I don't feel like I ever made it to Holland. Maybe I am still on the ship or airplane that will take me there some day.

I just felt so tired of being the mother of an autistic child today. We had my friend Fab over and it was great to see her, but I kept being struck by how I could not just ever relax and assume Janey was okay. I let my guard down for just a minute when she was in the kitchen alone, and she smeared her diaper all over. I let her play with the kids and something upsets her and she grabs hold of Fab's daughter and scares her, and me, I hope her daughter didn't realize that Janey was probably about to bite. Janey was happy to see Fab, but called her all kinds of random people's names, including my favorite for her to call other people, Mama. When Janey was upset with me today, she kept calling for Miss Heather, the OT at school.

I don't think Janey being autistic is making my life more rewarding. I probably am supposed to make myself think that, but I don't think it. I love her just how she is, but I can certainly picture a different Janey, one without autism, not that I would love that one any more than this one, but my life would be a lot, lot, lot, lot easier.