Silver Anniversary

Yesterday was our silver anniversary, marking 25 years of marriage.  And I was thinking all day that if I'd somehow been able to see the future, and needed to pick out a husband specifically to be my partner in parenting Janey, I couldn't have picked a better man than Tony.

You don't hear nearly as much about autism fathers as autism mothers.  But I'm pretty sure Tony's not the only fantastic autism father out there (in fact, I know for a fact he isn't---here's a shout-out to you, Dan!)  Tony is Janey's rock star.  I'm okay in her eyes, but Tony is her hero.  When he gets home from work, I see a smile that I just don't see any other time.  Daddy takes her for car rides, dances with her, cooks her favorite foods, makes silly voices for her, delights in funny things she says---Daddy is the sunshine of her life.

Almost every afternoon when Tony walks through the door, I say "Thank you for coming home".  He often jokingly replies "As if I have a choice!"  But he does have a choice.  I know that some fathers, faced with the challenges Janey brings (or the more typical challenges that William and Freddy brought) would not come home---would decide that it was all a little more than he bargained for.  And I won't say what I hate to hear---that I don't know how single mothers do it.  I know how they do it.  I know you do what you have to do.  But I will say I can imagine how incredibly tougher my life would be doing this on my own.

I've read that the toughest years on a marriage when parenting a child like Janey are the early years, but I don't think that's necessarily true.  Most people understand that parenting children in the early years is a very intense thing.  But most people also know that it gets easier, that eventually there will come a day when the children don't need to be cared for 24/7, when the children have lives of their own.  That day will not come for Tony and me, or for so many families like ours.  We will take care of Janey for the rest of our lives.  I am not saying this to try to say what a burden it is, how unfair it is, any of that. It is just how it is.  But I don't think many people would argue when I say that does put a strain on a marriage.

However, I think in many ways Janey has given us a stronger marriage.  We need each other.  We need each other desperately.  When Tony gets home, I am thrilled---each and every day.  I am thrilled not always for the reasons you might think of when reading romance novels---I am thrilled because I know I will get a little break, that I can sit and read for a bit.  When we do get a little bit of time alone together, we treasure it.  Yesterday, we had a wonderful day while Janey was at school.  We watched some TV, we went out to lunch, we talked and laughed and reflected on the past 25 years.  I am sure many people do more exotic things for their silver anniversary.  They might take a cruise, or have a huge party, or buy each other big gifts.  But I think we had just as much fun.

I'm not going to say it's all been sunshine and roses.  There have been times when the stresses of our lives certainly brought out the worst in both of us.  There have been bickering middle of the night fights over who slept less, there have been times that we lashed out at each other because we had run out of patience a few toileting disasters ago, there have been arguments over nit-picky things we felt the other wasn't handling correctly.  But in looking back, those moments fade behind the good moments, the moments we together watched Janey do something that amazed us, the times we quoted Janey's latest video obsession and both of us got the reference and we laughed until we cried, the amazing moments when all three kids were together and happy and we couldn't believe we've created the family we have.

To all the fathers out there, indeed, to all the married couples out there living this uniquely challenging life----we raise a cup of coffee in a virtual toast to you.  And to Tony, Happy Anniversary.  I love you.

Hearing myself on a bad day

Yesterday was a Bad Day.  Not the worst day ever, but not a very good day.  I read the news too much, and worried too much, about health care and education and Mary Tyler Moore dying and all else.  I am not political, but it's hard to keep from hearing political decisions and worries and anger unless you are in a remote location with no internet, TV or radio---coincidentally, the location I've been daydreaming about somehow going to.  So long before Janey got home from school, I was not in the best of moods.

Frog and Dog from Word World, feeling like I did yesterday

Janey got off the bus yelling.  It took me a few minutes to figure out what she was yelling.  It was a line from "Word World", one of her favorite shows, over and over---"Who's going to read my book on the radio?"  She was screaming it with the intensity you would usually save for warning people of a fire or flood.  I'm sure it was not easy on the bus driver, aide and other kids on the bus.  She screamed her way in, and I guessed that possibly she wanted to see that episode, and put it on.  She watched it, with not that much screaming, but then it was over and another one came on.  Janey didn't want to see the next one.  Not at all.

Tony says that Janey's screaming often hurts his ears.  I thought this was more of a figure of speech.  Maybe I'm half deaf already, but I hadn't had my ears literally hurt by a scream---until yesterday.  Janey's scream over the wrong show coming on felt like someone was poking an ice pick into my head through my ears.  It was truly ear-piercing.

I tried, and in my mind did a good job with, starting my calming patter with Janey as she screamed.  I said things like I knew she was upset, I wanted her to feel better, the wrong show was over...things like that.  However, I also must have said "I don't like it when you scream"  I know I must have said that, because that is the phrase she started repeating.  At the top of her lungs.  For a long, long fifteen minutes or so.  I hope I didn't really sound like her echoing of me.  If I did, I sounded like, well, someone seriously unhinged.

Finally, she calmed a bit and asked for a snuggle.  I put blankets over us, as she likes, and lay next to her and we sang together a bit.  Things seemed better.  Then---the bed was soaked.

As I pulled the sheets and blankets and everything else off the bed, I must have said "I'm so tired of this"  I didn't mean to.  I meant to...I don't know what I meant to say.  I meant to say whatever it is you are supposed to say to a twelve year old autistic girl who is sometimes toilet trained and sometimes not, and who refused at least three times that afternoon to try to use the toilet.  I don't know exactly what that right thing to say is.  I don't know if anyone does.  But she heard me.  She heard me and started repeating, again in scream mode "I'M SO TIRED OF THIS!"  For half an hour.

When Tony got home, I was pretty much reduced to a quivering, ranting mess.  Often upon his entrance after work, I say "Thanks for coming home".  I mean it.  I know there are men, and women, who would, after the years of coming home to a spouse who is acting like I was acting, would say "to heck with it" and just stop coming home.  Tony is not that man.  I am very lucky.  He took over with Janey and I sat for hours watching dumb shows on TV and trying to empty my mind.

Janey slept well last night, and woke up in what seemed to be a good mood.  I hope school is okay.  Reports are she's been having a tough time there lately too.  Yesterday her teacher said she was singing loudly in the morning, and I could picture it quite well.  I honestly don't know how the other kids in the room can work at all when Janey gets loud.

I don't know how to conclude this.  I wish I could say I'll try not to say things that aren't positive to Janey, that her repeating of them shows she hears negative messages from me.  But honestly, I don't know if I can be that perfect.  I don't know if anyone could, anyone on earth.  Most of the time, I can truly say I do the best I can, and I'll keep doing that, but some days, it's a lot harder than others, and I am sure that goes for Janey too.  Thanks for listening, my friends.

Allowing ourselves to feel sad

Yesterday on the Rarer in Girls Facebook page, there was a great discussion about times when we parents feel down about our children's autism.  It made me think about how at times, it seems like we are being told that we aren't supposed to feel that way---that we need somehow to always stay upbeat, positive and forward-looking, that we need to never stop and feel sad or discouraged.  I find blogs like that sometimes, and to be perfectly honest, they are sometimes tough for me to read, because they make me feel very guilty that I can't maintain that level of positive feelings and optimism.  The discussion yesterday made me think.  I think it's only human, only natural, for us to feel discouraged, sad, down and even despairing at times, and we should not feel like that makes us bad autism parents.

I think back a lot to a day when my younger son, Freddy, was almost 11.  I woke that morning and checked on him, as his asthma had been acting up the day before.  As soon as I saw him, I knew he was in very, very serious shape.  Every breath was a struggle.  His chest was drawing in horribly with every breath.  We drove at top speed to the hospital, and within a minute, he was in a room being treated.  The whole day was like a nightmare.  They couldn't get his attack under control for a long time, and wound up giving him an IV of magnesium sulfate, a drastic measure.  He was admitted to the hospital.  That night, his heart rate showed signs of a possible heart defect.  I remember sitting by him as he fell asleep, still breathing with trouble.  I don't think anyone on earth would think that it was wrong that I felt sad that night, scared, overwhelmed.  Of course I had some grateful feelings---that he was being treated, that we made it to the hospital, that he was alive.  But if someone had said it was wrong for me to think "I wish he didn't have asthma.  I wish this hadn't happened"---well, I don't think most people would think that.  And I don't think most people would say that me feeling that way meant I wished I didn't have FREDDY, that I wished he wasn't himself.

However, with Janey, with autism, people sometimes do think that.  They think that wishing she didn't have autism, wishing that none of the events that autism have caused had happened, means that I wish I didn't have JANEY.  And that is not true.  That is so far from true that it makes me angry to even think about.  Autism is NOT Janey.  Autism is something she HAS.  My own personal beliefs are that autism is an auto-immune disease, in Janey's case.  But whatever brings it on, it's not a choice.  It's not how Janey has decided to be.

Another parallel between autism and asthma is that there is a huge spectrum.  There are people with mild asthma, asthma that has never required medication, that only shows itself after cold or after a lot of running.  Thank goodness, that is what Freddy's asthma had evolved into.  If you have a child with that kind of asthma, you will see it very differently than the asthma that possibly could have taken my child's life.  Janey's autism is on the more severe end of the spectrum.  I can hope and dream and aspire to many things for her, but in reality, they are unlikely.  It's very unlikely she will ever live on her own, or marry, or have children, or hold a job.  I can hope for these things, but in many ways, I think that does Janey a disservice.  It's denying who she is and what she needs to be happy.  And even if those things happen, that doesn't change the RIGHT NOW.  If I had said "I won't take Freddy to the hospital for this horrible attack, because that would be denying that he might someday live a life basically unaffected by asthma"---well, I don't think he'd have been around for the life he now leads.  Being realistic about Janey's autism lets me meet her where she is right now.

The discussion on Facebook talked about the sadness of dreams for the future being changed by autism.  I think this is a very valid reason to feel sad.  It's not unique to autism, but the level of changed dreams is what might not be understood by some people.  The term "dream" might be the issue here.  When I say I feel sad that my dreams of Janey one day marrying, becoming a mother, graduation from high school or college, getting a job will not be met---those are not really dreams.  They are well within what most of us do in life.  It seems paternalistic, judgmental, unrealistic---all those things---for anyone to say we shouldn't feel sad that our children will not do the things that most people do.  It's very different than if, for example, I'd had a dream Freddy would be a famous runner and I was sad his asthma would prevent that.  Most of us aren't going to become famous runners, and although I won't judge anyone's sadness, sadness over a dream like that not coming true isn't the same as sadness that my daughter will most likely never know the joy of being a mother herself.

The bottom line is this, in my eyes---being sad about a child's autism DOES NOT MEAN YOU DON'T LOVE AND VALUE THE CHILD.  I put that in all caps because I AM shouting it.  I love Janey as much as I could possibly love anyone on earth.  But I am sad, so often very sad, about the limits that autism has placed on her.  And I won't apologize for that.

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.

What Is Worse, What Is Better

As of yesterday, Tony and I have been married 22 years.  Anniversaries always for us provoke some looking back and reflection, and as with every single aspect of both of our lives, Janey's autism played a big part in that thinking.

How has autism affected our marriage?  I'll start with the "for worse" part, because I want to be honest.  It's tough on a marriage to have a child with disabilities, and Janey's particular brand of autism has been a huge challenge.  To start with, we almost never get time alone together.  "Date night?"  Don't make me laugh.  There isn't exactly a long line of people asking to watch Janey.  It's too hard for almost everyone.  We are extremely lucky in having William and Freddy.  Yesterday, Freddy watched Janey so we could go out to dinner.  But that was a special gift to us.  We can't ask for them to do that often---it's a huge job.  Janey requires our attention at every moment she is awake and home---one of us is always, always assigned to watching her.  We don't have a lot of time to just be together.  She wakes basically every night, often.  I won't get detailed, but you can guess how that affects a marriage.  And there is the stress---the endless stress that makes it hard for us to be at our best with each other.

But there are "for better" parts too.  We need each other---desperately.  I don't think either of us would ever entertain even a thought of trying to go it alone with Janey.  We have to be a team.  In our particular case, I think autism has also sharpened our shared philosophies.  From the start, we felt that our kids would come first in our lives, and every day, I see Tony putting that philosophy to work with Janey.  I love seeing them cook together, run together, laugh together.  I love hearing his patience with her.  The moments she says something adorable or unexpected, the laughter and happiness we share is something beyond almost any joy I've felt in life.  We also appreciate our boys extremely much.  We realize what an amazing gift children are, and how astonishing every milestone, every graduation or college acceptance or job gotten or A report card is.  We don't take much for granted.

What is the biggest impact Janey has had on our marriage?  I think it's on our view of the future.  There is not an end to parenting Janey.  Not that there is an end to parenting any children, but with most kids, there wil come a day when the day to day parenting is over.  With Janey, that is not going to happen.  Our future includes her.  There is not going to be a relaxed retirement for us.  We are three, not two.  And that sharpens the present.  I think we are more prone to enjoy the little now moments.  When we all are enjoying a good mess of Chinese food, laughing and joking and eating, we live in that moment.  We don't sit and figure out how we are going to afford that retirement home in Florida.  We think about how we are going to enjoy that next cup of coffee.

I've noticed a lot of songs and writing about anniversaries deal with the question "Would you do it all again?"  If we could have looked into the future and seen today, would we have run from each other before ever marrying?  I don't think so.  I am not being blindly positive right now.  I am not saying my mind doesn't sometimes drift to imagining a different life.  But I know how lucky I am to have a happy marriage, to have a husband that I love, to be with a man that has the same core beliefs in life I do.  Janey, as well as our sons, have made our life what is is, and yes, I'd do it again.  With my eyes open, I would do it again.  Here's to 22 more years.

Good Autism Mother vs. Bad Autism Mother

In my head, there's a long-running series "Good Autism Mother vs. Bad Autism Mother".   Any situation with Janey can trigger an episode, one of those staples of sit-coms, the same scene replayed with each mother getting a shot at handling it.  Here's an episode for you, entitled "Janey Wakes Up in the Middle of the Night Crying"

Good Autism Mother Version----

GAM, as I will call her, immediately of course wakes up completely, and rushes to Janey's side.  She is already searching her mind to figure out the antecedent to the crying---what caused it?  Because of course she truly believes nothing is just out of the blue.  Something is MAKING Janey sad, and figuring it out is job one!  While working on that, she comforts Janey "My sweetheart!  I am right here!  I will do whatever it takes to make you happy again!"  Janey keeps screaming.  GAM starts with a huge list of ways to help.  She sings sweetly to Janey.  She rubs her back.  She pulls out a communication program on the iPad to help Janey say what is wrong.  She assesses Janey's possible level of hunger, and fixes her a nutritious snack if there's any hunger possible.  She speaks to Janey in kind, measured, reasonable tones "You seem very sad.  How can I help you feel better?"  If nothing seems to work, she assumes that the problem is that she herself, GAM, has not yet figured out what caused the crying, and that she just has to work harder at it.  She never, ever thinks for a minute about the sleep she isn't getting.  She stays by Janey's side for 2, 3, 4 or however many hours.  She doesn't wake up her husband and beg him to take over.  She is patient, calm, loving.  Eventually, when it's almost morning and almost time to get Janey ready for school, Janey falls back asleep.  GAM doesn't grab some sleep them---oh, no!  She gets Janey's clothes ready, organizes her backpack, does some light housework and then gently wakes Janey up to start the day.

Bad Autism Mother Version---

Upon hearing Janey's cries, BAM pretends she doesn't hear them.  She pretends to be fast asleep, hoping her husband will get up instead of her.  If he doesn't, she yells out quite loudly "Janey!  It's the middle of the night!  Go back to sleep!"  This won't work, of course, but maybe it will wake up her husband so she doesn't have to deal with the whole bit.  He doesn't wake up.  Reluctantly, and thinking over and over how she is very put upon and stressed and nobody understands her life, BAM gets up and goes to Janey.  She says "It's nighttime.  Go to sleep"  She never once even TRIES to figure out why Janey is crying.  She doesn't really care, at this point, when her eyes keep closing from the horrible lack of sleep.  Janey keeps crying.  BAM says "Hey!  How'd you like to watch some Kipper?"  Janey doesn't answer, but BAM takes that as a yes, and puts on Netflix to a Kipper episode both Janey and she can recite fully.  Janey kind of half stops crying to watch the episode, and BAM takes the opportunity to sit next to Janey on the couch.  She knows she can't sleep, because Janey will then tear the house to pieces, but she closes her eyes a couple times.  The night drones on.  Janey is still crying off and on.  Janey asks for soda.  BAM doesn't even consider  that maybe soda is not the best thing for Janey to drink in the night.  She just hopes against hope Janey will drink it and go back to sleep, so she pours Janey a glass.  Janey pours the glass on the floor.  BAM walks away, straight to her sleeping husband, wakes him up rudely and says "I've been up for hours.  Janey is driving me insane.  Take over right now"  BAM doesn't care that her husband has to work in a few hours.  She doesn't care about anything but sleeping.  She goes straight to sleep, leaving her husband to clean up the soda and deal with Janey.  Janey, as in the first version, goes back to sleep right about time for school.

I've got thousands of episodes like that!  But now I have to wake up Janey and get her going for school.  BAM is going to grab one last cup of coffee, though, before GAM takes over and gets Janey through another day.  Both of them wish you all the best of days.

Always open for advice

First, just a note that Janey slept much better last night.  She seems better today---not super happy, but very little crying or screaming.  Thank goodness.

I've been thinking a lot about advice lately.  I've noticed that after things are very tough with Janey, and I write about it, a lot of friends and blog readers (and those categories overlap a good deal!) seem hesitant about offering advice.  I never want to make anyone feel that way.  People often say to me "I know I have no idea what it's like to being going through what you are going through".  Well, that's true, but that's true for anything anyone is going through.  None of us truly know what another person's life is like.  I know that everyone has tough challenges, and everyone has situations that are unique to them.  But that doesn't mean that no one has advice or ideas that might be helpful in another person's situation. 

For me personally, advice is never unwelcome.  I don't do anything in regards to Janey (or in any area of my life) I don't want to do, so if the advice is not something I think will work, I just don't use it, but that doesn't mean I'm upset I got it.  I need all the help I can get.  

I can see how it would be easy to drive people out of your life if you have a child with a significant disability. It's very easy, when sleep deprived and overwhelmed and at the end of your rope, to think everyone else's life is so much better than your own, and to start resenting them.  I never want to be like that.  Janey is tough.  I'll never pretend she isn't.  But I have a lot of wonderful things in my life.  She is one of them.  She is a wonder to me, so often.  And I have a great husband, two amazing sons and many friends so amazing I wonder every day what I did to deserve them.  I have enough to eat, shelter, all the books I could ever read (thank you, Boston Public Library), my hobbies, good health care, and I am living in this amazing information age, where from right at my computer, I can access Facebook, email and the whole world of the internet.  I am lucky in so many ways.

There are days when I feel very alone.  There are days when everyone feels very alone, I know.  But I know I'm not alone, and I am so glad I'm not.  So please, if you have ideas, advice, stories---never ever hesitate to share them.

Happy Valentine's Day, autistic parenting style

Tony and I were married just a little over a year after meeting each other.  In that time, we discussed a few things about what we wanted out of our marriage, mostly to do with kids, but even if we had dated for 30 years, I don't think everything that actually has happened with us would come up.  Sometimes, we talk about our first kiss, and if somehow we had been able to see then into the future.  Would one or both of us have bolted?  We didn't see it all coming---the terrifying pregnancies, twice hearing that autism diagnosis, watching  Freddy struggle to breath more than once, caring for Tony's increasingly sick parents, seeing friends and family members die, the money struggles that never quite seem to get better, our own illnesses and conditions---the insulin shots, the thyroid woes, the high blood pressure and asthma and on and on, the days where Janey screamed for hours and hours on end while we helplessly tried to make her feel better, the struggles and cares and worries that married life has brought us.

And yet, I think I'd do it again, and I think Tony would say the same.  Because for all those moments, there have been moments that were better than we ever guessed life would be.  There's the times we all have laughed as a family until we cried.  There's the pride we have felt watching our boys grow up to be more than we ever, ever could have dreamed of.  There's the joy in our beautiful blond daughter, singing a song that fits the moment exactly.  There's the love we still have for each other.  Tony looks better to me today than he did that long ago first kiss day.  He's grown into a man that I think any woman would be lucky to be married to---a wonderful father, a fantastic cook, a caring husband---a terrific man.

Autism tries a marriage to near the breaking point often.  There are days when Janey has been screaming all day and Tony comes home and I lay into him, screaming at him for nothing, because I've held in the screams. There's the times we fight over petty things, when the fights are really pent up frustrations with the limitations autism has put on our lives---the lack of time alone, the lack of relaxed family time, the endless needs of a toddler in a 8 year old's body.  Autism and its trials have not always brought out the best in either of us.  But despite all that, I don't think I could find someone I'd rather go through all of it with.  I hope Tony feels the same way.  We need each other, more than most married couples need each other.  We literally could not do this alone.

I love you, Tony.  Happy Valentine's Day.

Hitting A Wall

Yesterday, I hit a mental wall.  I took Janey to school, came home, did the usual bit---housework, on-line work, packing things, etc.  It got back to be about 2 in the afternoon, and I started thinking about picking up Janey at school.  It was rainy/snowy and messy out.  I was bone tired.  Most of all, I was thinking about the day before, with the CVS screaming incident and Janey going quite frankly insane in the car.  And I felt a feeling that I've felt a few times before with being her mother.  I was hitting the wall.  I could not picture going out to drive in the slush and dark, picking her up and not knowing if it was going to be another ride through Hades.  I felt like I just literally could barely move.  I sat there, feeling shaky and dizzy.  And then I called Tony, because I am a very lucky wife.  I told him how I felt, and thankfully, his work is a little flexible, although always intense.  He said he could come home an hour early to get the car and go get Janey, if the next day he could go into work 2 hours early, and I said fine.  Then I collapsed into bed, and just lay there, trying to work up the energy to keep the day going.

I am a low energy person at the best of times, due at least partly to a thyroid that went on strike at least 30 years ago and despite me taking increasingly larger doses of replacement, has left for what looks to be a permanent vacation.  That is coupled with being Janey's mother, which is many, many ways is like being the mother of a perpetual toddler.  I am closer to 50 than 40.  Most days, I push through it, because that's what all mothers do.  You don't really have a choice.  And it's your responsibility.  I chose to have Janey, and she is my child to take care of.  But some days, I hit that wall.  I wonder if I can do it.  It's a useless wonder.  I am going to do it, whether I can or not.

But I think about what used to happen, in the past.  In the bad old days, which I in no way want to go back to.  But then, it was not considered possible to raise a child like Janey at home, at least by the vast majority of people.  Kids like Janey lived in institutions, and they lived horrible, horrible lives, most of the time.  I would do anything, including give up my own life, to have Janey not live a life like that.  I am eternally glad we live today and not then.  But I do think, like many things, the pendulum has swung in the totally opposite direction.  Now, so so many parents are routinely doing what was previously considered not possible.  They are caring for disabled children at home, and in many cases, they are getting almost no help doing so.  I am lucky to have Janey in school and afterschool for many hours a day, and then to have a 6 week summer program.  But I know far from everyone has that.  And even with that, I am exhausted.  Tony is exhausted.  The boys are exhausted.  We can never take our eyes off Janey.  Never.  We never know what day is going to feature her suddenly going through some kind of crisis, which will turn our world upside-down.  We live in fear she will hurt herself by doing something she doesn't know not to do, like running into traffic or eating something she shouldn't eat.  And we are all tired.  Society decided that the way children like Janey were treated in the past was wrong, but they didn't settle on any other way to help families raise them.

I don't feel Janey is anyone's responsibility but our own, but I do think if there was a real understanding of how hard life can be with children like Janey (and it's even harder with many children, for sure), the majority of people would want to spend the relatively small amount of our nation's overall budget it would take to provide more direct help to families.  Not the patchwork of programs that somehow can be accessed if you know just who to call and what to say and are blessed with being hugely persistent and not deterred by people trying their best to keep you from using them, which is what most out there is like now, but programs that parents could use without guilt, without jumping through hoops, without begging.  And mental health care absolutely needs to be as available as physical health care.  No parent should have to beg to have someone help them handle their child when they are in crisis.

For now, I feel better, thanks to Tony's help, thanks to school, thanks to Janey for having a few better days. But I'll hit that wall again, and again, and again.  There's no getting around that, and it's scary.

Anything but Crying

For me, there are two states of being Janey's mother.  There's the state I'm in when she is not in a crying spell, and there is the state I'm in when she is.  The non-crying Janey state does pretty well.  I'm far from perfect, but I feel most days like I can be a decent enough Autism Mother.  I accept her, I have fun with her, and I do my best to help her learn and navigate the world.  But when Crying Janey shows up, I don't do nearly as well.  

I've never been great with crying.  Both Freddy and Janey were colicky as babies (Freddy worse than Janey) and it was hell.  Pure, pure hell.  You have this sweet, helpless little baby that screams for hours and hours and hours every day, and you can't do a thing to make them happy.  You start to feel completely useless, like the worst parent on earth.  The best thing in the world is when they outgrow that stage.  

But with Janey, in some ways, she's still colicky.  It's like colic in that most of the time, we have absolutely no idea what sets her off.  We can try a lot of things, but most of them don't work.  You just have to wait it out. The big difference is that she can move around, can throw fits.  A baby doesn't have much of a schedule, but Janey has to go to school---I have to dress her, drive her, pick her up, get her fed, get her to bed---all regular parenting stuff, but when she's screaming endlessly, all very hard to do.  

The last few nights have been crying nights, as you might have guessed.  The car rides home both days were extremely tough.  I hate to drive, and when I have to drive with a sound like a siren from the back seat, the sound of my daughter being completely inconsolable, well, let's just say it's not fun.  I made up a little song the first crying night, partly in hopes that it would distract Janey and partly just to keep my sanity.  It went "Crying in the car makes Mama tired (repeat three times), Please don't cry in the car!"  Janey learned it immediately, as she does with songs, and managed to sing it while crying.  That didn't help much.

When I got home last night, I asked Tony if he could go in early today so he could come home early and be the one to pick up Janey.  Well, I didn't exactly ask him.  I demanded it of him.  I didn't speak in the tone of a Good Wife.  I spoke in the tone of a Very Bad Demanding Rhymes with Witchy Wife.  Tony understood, but I don't like to be like that.  Janey continued her crying most all of the night.  We did everything we could think of to make her feel better---she ate a ton, she used the potty (as sometimes constipation is a crying trigger, once in a while), I held her and comforted her, we turned off the lights and made the house as calm as possible, we used all our tricks.  And still she screamed.  And then I said "I need you to stop crying"  I didn't say it in a Good Autism Mother voice, a voice that is calm and soothing and understanding and endlessly patient.  I said it in a Bad Autism Mother voice, a voice that is letting a hint of the anger and frustration and tiredness and endlessness in.  I don't think Janey noticed the difference, at that point, but I did.  It's not how I want to be.  

I can handle this autism gig, most days.  I can accept it.  I can even sort of a little embrace it, sometimes.  But when Janey cries, and can't tell us why, and it lasts for hours or sometimes days, that is not easy.  That is so far beyond not easy it's hard to even describe.  And of course, the one it's hardest on is Janey.  I feel for her.  I would do just about anything to make her feel better.  And I have no idea how to do that.  

She did eventually calm down last night, and was actually happy by the time she went to sleep. That's the hint of progress here.  She sometimes does calm down before days have gone by.  She was mostly okay this morning, although she screamed a little as I was leaving her at school, but her teacher did a great job with calming her down.  I have to believe it's getting easier.  I have to.

It's all about Daddy right now

Lately, Janey has been going through an "it's all about Daddy" stage.  It's a stage I think a lot of girls go through at about age 4, and as Janey is delayed with most things, it's about the time for it, I guess.  Tony is a wonderful father, and he and Janey have always had a special bond.  We say a lot that she's the most like him, in her basic personality, the part that is unaffected by autism.  She likes to be on the move at all times, she loves cooking and food, she is more athletic than the boys, she just clicks with him very well.  But she's taking it to a new level the last few weeks.  The few days that for some reason Daddy wasn't there when she got home from after-school, which he usually is, she fell apart.  It's hard with her, as she doesn't come out and say "I'm sad because Daddy isn't here", but she asks to do the things they do together, and when I can't do them, or can't do them the way Daddy does, she is heartbroken.  This morning, I felt like for one of the first times, she was understanding he was about to go to work, and she was not happy at all.  A hour or so after he left, she looked at me in tears and said "Daddy!  Have a great day!  Daddy!" which is what he said to her before he left.  I called him at work so he could say it to her again and remind her he'll be home tonight, which seemed to work.

The picture is from a few years ago, but shows well the happiness Janey gets from the games that Daddy thinks up---this time, drumming with cans.

The hard part is when Tony has to be away.  It's hard for all of us, but it's especially hard for Janey.  His current job requires a week or so here and there of training around the country---last year it added up to 5 weeks, which was unusually much, but most years will require some time.  And generalizing more, it's hard for Janey when anyone isn't around that she expects to be around.  The other day, she rode along when we took her cousin Zeben back to the airport.  That was hard, but what was harder is that William got out with him to say goodbye and took the T home, so he wasn't in the car going home.  About half way home, Janey suddenly said "William back!" and started to cry.  I know she thought William had left, like Zeben leaves, and wouldn't be back for a while.  We try to explain, but that is a concept that's a big beyond her.  It must be a scary world to live in, without a mental clock or calendar in her head, or one that seems to work well.  People can just disappear, and although she sometimes knows when they will be back, if that schedule is even a little off, I think she feels very unsure if she'll ever see them again.

I'm very, lucky to have a husband like Tony, and the kids are lucky to have him as a father.  He loves Janey (and the boys) exactly as they are.  Her autism is something that he can, better than I can, look around and past, to just see the little girl he wanted so much, the girl that adores him and is his joy.  Here they are, running together, two of the loves of my life.

Twenty Years

Baring any last minute divorce action, Tony and I will have been married 20 years on Thursday. Those have been good years----years with ups and down, with some serious health crises, with some losses of family and friends, but with more happiness and laughter and good times than bad.

The picture shows us just before we got married. I'd include an "after" picture, but I don't want to scare any people thinking of marriage off with how it aged me! Tony, however, looks oddly the same!

Autism certainly impacts our marriage. It can't help but do so. When you are under constant stress, when you never have a minute free of worry or supervision, when your time together is limited in the extreme---it affects you. At times, it's caused us to bicker over things so little that it would seem crazy looking back. It's caused us to feel like strangers living in the same house when we have done nothing but care for Janey for days. It's caused us to be exhausted, and not give each other our best. But overall, I would say it has made our marriage stronger. Part of that is just that both of us know it would be impossible without the other. Taking care of all our children has been a partnership, I think more so than with many husbands and wives. We need each other badly. Also, the few moments we get alone, we treasure. We don't take our time together for granted!

As with most people that get married, we took a leap of faith. I often think how lucky I got with Tony. Without us ever sitting down and figuring it all out, we have nearly identical philosophies on so many issues. Although most marriage advice writing would tell you otherwise, our children come before our marriage, and I think that has saved our marriage. We have a common goal---raising our kids as best we can. I think we both also are people that didn't go into marriage with a lot of expectations and visions. We didn't even picture the picket house in the suburbs, a perfect little boy and girl, youth sports and Disney trips and the best schools and all that. We didn't look a lot past just wanting to be together and have children. So when things got crazy, as they often seemed to, we didn't feel betrayed. We also share a strange ability to put aside the crazy times when we can. I can't think of how many days have been pure awful which we have ended with take-out Chinese, a funny TV show and a few enjoyable shared moments, and managed to end the day with a smile.

This all sounds pretty sappy and self-satisfied, reading it back, and I don't mean it to sound that way. It's been hard. But it's been a shared hard. I look forward (mostly) to the next 20 years!