Stress

 We've all seen the articles.  They are all over women's magazines, wellness websites, those flyers in doctor's offices.  Stress is harmful to your health.  But hey, here's some ways to reduce your stress!  I'm looking at one now, filled with gems like deep breathing, practicing yoga, taking a bath, reducing your caffeine intake, learning to say no, and, of course, practicing mindfulness.  Okay.  Yeah.  After I'm done laughing, I feel like crying, the kind of crying that comes from being completely unseen by those who are not familiar with the world of severe special needs.

Let's go over a day with Janey.  We'll start with the morning routine.  We wake her up (that is, assuming she's ever slept, which is a big if).  We determine if the bed needs a complete change, and if she needs a shower due to...you know.  We determine her mood---is she screaming and biting herself?  Or manically laughing?  All this affects how long it will take to get her dressed and ready.  Because---we have to be out there soon waiting for a school bus that might or might not show up within a range of time that is up to an hour either way.  But I'm sure a little caffeine reduction and some good old deep breathing is what the situation calls for.

Then---the "easy" part of the day.  Janey is at school.  Now, we only have to hurry and do all the things that are impossible to do while caring for her---bills, housework, shopping, and oftentimes, sleeping.  In there someplace, we need to do long term planning.  Janey is 17.  There's a lot to be done before she turns 18, and we need to get on that---NOW.  By the time we can draw a breath, the bus is heading home.  We haven't gotten in a bath, or any mindfulness---shoot!  We have gotten in a lot of mind-full-of-stress-ness, though---the worry that never quite leaves us every time Janey isn't within our sight. We love and trust her teachers and aides and therapists, but we don't know how her day is going.  Is she having a tough day?  Has someone else having a bad day of their own yelled at her?  Is she confused, scared, bored, overwhelmed?  Is she safe?  The stress of having a child who doesn't communicate much at all with us---that base level of stress, even on the easiest day, is never, ever gone.

And now, Janey is home.  We are happy to see her.  We hope she is happy to see us.  Some days, she gets off the bus with smiles.  Other days, with screams.  We check if her notebook is written in.  Did she have a tough day?  Did she sleep all day at school after a sleepless night?  Did she have a lot of "energy" (read that as manic energy, pacing and repeating phrases and laughing randomly)?  We hang on every word written, desperate for a glimpse of her life away from us.  

The afternoon and evening.  Janey, even in the best of moods, makes constant demands---"Want to go for a car ride?  Want a shower time?  Want tuna?  Want salami?  Want cheese?  Want Buzz Lightyear?" and the non-specific but highly insistent "I NEED HELP!"  Sometimes, we try the stress reduction technique of learning to say no.  Any no, even after minutes and hours and days of yesses, is met with a scream, some arm biting, stomping.  As we deep breath our heads off, Janey repeats the demand that caused the no, every minute for hours.  The things she asks for, I know, are things to relieve her own stress, stress which I am quite sure is as pervasive and severe as ours.  The warm water of the shower, the music and movement in the car, the videos repeated over and over---she needs stress relief too, and she doesn't know, isn't able to know, how that stress relief works on us---how stressful it is to be her parent, to want to do anything on earth to help her, even as we are falling apart.

Then---bedtime.  Or not.  These days, a night where Janey falls asleep at a reasonable hour and stays asleep all night happens probably 1 out of 3 nights.  The other nights---another 1 out of 3 feature short sleep, with her falling asleep easily but waking at 1 or 2 am to never go back to sleep, or her finally falling asleep at midnight or 1.  The remaining third---no sleep nights.  No sleep at all.  None.  That was last night.  And when Janey doesn't sleep, ain't nobody sleeping.  She constantly wakes us, either by asking for the same things as daytime---"Salami!  Shower!" or by screaming, or by turning on the TV or one of the devices she has, loud and endless..."It's fun to act like animals!  Fancy Nancy! Little Einsteins! Forky! Three Little Kittens!" ... the tunes that play on constant repeat, in my mind even when they are not actually being blasted.

And then it's morning, and it all starts again.

Janey is the love of our lives.  She is amazing, fascinating, beautiful.  And it is not her fault, in any way at all, that the stress of caring for her is...there is so much I want to say here and I won't. And I won't do what I am hugely prone to do, what I am sure many of you are prone to do, to minimize, to worry that speaking the truth of the stress is somehow wrong, to pretend that I'm fine.  I wouldn't do that because I know I'm not alone here, that others are living this life, and that one of the hugest stressors is feeling alone in your struggles.  You aren't.  I'm not.  And with that, I'm having another cup of coffee---today, as every day, is not the day to reduce my caffeine.

Mood Mirroring

Things have been stressful lately.  I won't get into all the ins and outs, but will just say this one source without getting political---if your retirement paperwork is not totally done and then the government shuts down, you don't get any retirement money.  Or any money at all.  We are fine for now, but it's not exactly fun. Add in literally about twenty other issues, and that's us lately.  But we are trying very hard to stay positive, and not just because we are Pollyannas.  It's because our moods so very much influence Janey's moods.

There are strangely many happy eggplant pictures out there.

I woke up this morning, nice and late as Tony let me sleep in, to a happy Janey.  A happy Janey is the most wonderful thing on earth---truly.  I wish you could all see her when she's happy.  Her smile is just plain amazing.  She smiles without any reserve.  When she is happy, any sadness of the past or future seems totally gone from her face.  She looks like you would look if someone told you you had both won the lottery and were going to live forever.  One of our favorite things to do is see her reactions to the little things she loves when she's happy.  One day, Tony told her he was making her some eggplant, in the middle of a happy day.  She replied "EGGPLANT?" in a voice of pure, pure joy and excitement, jumped up, started jumping up and down and hugged him over and over.  Over eggplant.

When Janey is that happy, you'd do almost anything to preserve it.  It's been harder lately to keep the stress out of our faces and voices.  Tony and I started talking just a little, about one of the myriad of things that are worrying us, and Janey saw and heard, and the look came across her face, the tensing up look, the look that is almost fear.  We quickly adjusted ourselves, said what we needed to say in happy voices.  She relaxed.

I can hear my own rebuttal to this all.  Life isn't all happy.  Stress and anger and fear are part of life.  That is true.  But the things that are worrying us are not anything Janey can understand.  They aren't anything she can do anything about.  And, to be honest, her happiness helps us.  It reminds us that life isn't all about our worries.  We need her happy as much as she needs to be happy.  So we do what we can to keep our own cares from her.

The inverse to Janey's happy moods, of course, are her sad moods.  Like the happy moods, not a single hint of past or future happiness remains when she is sad.  She screams and cries like it's the end of the world, because I think for her it feels that way.  She is overcome by her own sadness.  And we are overcome by it too.  It's impossible to feel happy when Janey is sad.  Over Christmas vacation, she was sad a lot.  She doesn't like times without school, or changes in routine.  We loved having her brothers home, and I know she loved seeing them too, but they changed the routine, changed the feel of the house, and that was hard on her.

The mood mirroring works two ways.  It's a feedback loop. We strive to keep Janey happy so we can be happy, we avoid making her sad so we aren't sad.  There's of course much more to it than that, but that's a part of it.  But unlike her, we can control to some extent our outward show of emotions, and we try to do so.  I believe in assuming competence.  But I barely understand the political back and forths, the state health agency constantly making us reprove we are eligible for the insurance supplement we get for Janey, the health complications of diabetes affecting Tony's brother, the school choice system which is complex and scary, the mental health issues that affect family members besides Janey, the need to eat and heat the house while we wait for the shutdown to end...I could literally go on a long time, but I'll stop.  I can't explain to Janey why it's harder for us to stay positive lately.  We can only try to keep her happy.

And in doing so, we can be reminded that when it all comes down to the nuts and bolts, we have a lot to be happy about. I'm not into unicorns and glitter and magic when it comes to autism.  Autism is autism.  You don't need to make it magical or better than the rest of us.  It's what it is---every one of us lives with challenges and strength, and Janey's autism provides some of hers.  But when we see her dancing in joy over eggplant, or a car ride, or a silly dance---we are reminded that the sources of happiness are all around us, if we let them in.  Aren't we all trying to ward off the sadness, to let in the happiness?  So we'll keep smiling, for Janey and for ourselves.

Little Things Add Up To Big Stress

The last few weeks have been stressful.  Actually, based on how I've felt the last few days, they have felt extremely stressful.  There is nothing "big bad" going on, but lots of small stress causers, and they pile up until I feel like I do now.

I think that's the case with a lot of parents like myself.  We live with a base level of stress, most all the time.  When small things get added on, and on and on, it doesn't take much to put us over the top.  The funny thing is, when things are REALLY bad, something kicks in---adrenaline or a hidden reserve or something.  It's still very hard, but more a sadness or anger or worried hard.  Stress, for me anyway, is like the workaday version of those.  It can be just as tough to deal with, or tougher, without being as headline worthy.

What is stressing me, you ask?  Or even if you don't, I'll tell you.  Let's start with the last 10 minutes, after Janey got off the bus but before she started watching a Christmas Madagascar special and kicked me out of the room....

 I sit out in the 95 degree heat, waiting for the afternoon bus home from summer school.  It comes at highly various times, due to highly various Boston traffic, so I wind up often waiting for it a while.  When it does come, Janey gets off the bus and within a minute, turns off both air conditioners.  She hates AC.  It is sticky hot in a way that Boston sometimes gets, an unbearable way.  I suggest she uses the potty instead of the bed.  This displeases her, and she starts screaming.  I take a deep breath and try to calm down, and offer her some chips if she will try the potty.  She calls my bluff by going to where I've hidden the chips, easily finding them and opening both bags.  And then rejecting them.  As I go to clip one bag shut, she somehow hides the other open bag.  As I search for it, she screams hysterically as I have not instantly put on the TV show she asked for at least 10 seconds before.  I stop the hunt, find the show, clip the chips and sit down to write this.

Now an update, 15 minutes later.  After I wrote what comes before this point, Janey changed her mind about a show.  I went over to put on the new show she asked for.  But that was not really the show she wanted.  I was supposed to know that, somehow.  So she screamed a while longer.  I figured out the right show, and she pushed me out of the room again.  I sat down to write and have some of my coffee.  Janey came over to turn off the AC I'd turned back on.  I turned to talk to her, and knocked over all my coffee.  Naturally, it didn't just go on the floor, but instead on Janey's special pillowcase, the one non-human object in the world she cares for, which she obsessively takes off the pillow and puts down various places.  I tried to sneak the pillowcase into the hamper, but she noticed and got extremely upset.  Somehow it having coffee on it made it necessary in her eyes for me to make more coffee.  She pushed me over to the coffeemaker and screamed until I started some.  I started it, and then snuck back over here.

None of this is huge stuff, but in the half hour since she's been home, it's a lot.  And that has been this week.  Getting on the bus in the morning is the worst.  The bus comes to get her any time in a 30 minute range.  Today it was there at the earliest time, yesterday at the latest time.  If we aren't out there when it comes, they do honk, but they have a lot of kids to pick up and can't wait long.  So...we have to go out to wait for it at the earliest time.  Janey tolerates 5 minutes or so of waiting, but then she wants back in the house.  And screams because she can't go back in.  If the boys are available, I have them stay inside with her, but even then, if they look away for a minute, she takes off her shoes, and otherwise makes herself unpresentable for school.  Generally, they aren't available (Freddy works until late and William is currently visiting my parents), so that isn't even an option.  I just have to figure out how to keep Janey from freaking out in the heat while we wait.  Again, not a huge thing, but it's making me a little crazy.

Oh, shut up, Perfect Woman!

Sometimes, I am up to dealing with stress.  Lately, I'm not.  It's the heat, partly, and my health partly.  I don't get into health details much here, not to be mysterious, just not to overshare, but there are currently four different diagnoses I carry, each of which has among the top 2 symptoms "extreme fatigue"  And I am feeling that extreme fatigue lately.  I am feeling every second of my 51 years.  Having a child that needs full time care, who is not capable of self-care and will not ever be, most likely...it's tiring.  And stressful.

The woman in the picture is how I feel like I'm supposed to be.  It's my ideal, one that reality doesn't modify much.  I should be calm always, working on solutions instead of complaining, feeling grateful Janey goes to summer school instead of wishing it was for longer, cheerfully doing the housework while she is there instead of grudgingly doing it and wishing I was just sleeping instead...yeah.  I should be making up a nice chocolate cake instead of writing right now.

This is mainly just a rant. There aren't solutions.  And I'm certainly not alone.  I know you, out there in the wider autism nation, are right here with me in Stress Village.  And most importantly, I know Janey is stressed too.  And like me, she is doing the best she can.  So, we'll keep on keeping on.  55 minutes until Tony gets home.  Not that I'm counting.

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.

Flashback

Janey went back to school yesterday.  It was a good Christmas vacation.  She was happy a great deal of the time, and I think she enjoyed herself.  But she seemed pleased to be going back to school, back to the routine she likes.

She came home in a good mood yesterday, and I think school went well.  But something set her off around bedtime---tiredness or frustration over something she couldn't explain or who knows what.  Suddenly she was screaming and biting her arm and kicking and in a full meltdown.

That's when I said, without thinking, "I don't want to take her back to Bradley"  Bradley is the psychiatric hospital Janey spent time over two years ago.

Tony looked at me in surprise.  Once Janey was calm enough for us to talk, which actually didn't take long, he said "You are usually the one telling me not to jump ahead to the worst possible outcomes"  He was so right.  And I've been thinking about what I said all last night and all this morning.

I don't know what stress flashbacks technically consist of, but I think I had one there.  And I think I have them a lot.  No matter how well Janey is doing, it almost always feels a moment away from disaster.  She can be having the calmest, happiest day possible, and I fear that something will happen and things will go horribly downhill, and we will wind up in a hospital of one kind or another, or wind up getting a call from school that we need to have a meeting, we need to talk about her placement, or that Tony will call me from a ride with her and say she undid her seatbelt somehow and caused him to crash, or that some other random disaster will hit.

Thinking about the whole thing yesterday, I keep somehow connecting it to an article I read, one that on the surface doesn't have much to do with her meltdown or my reaction.  Here's a link to the article...link.  It's about a boy with autism who has won a Rhodes scholarship, after his mother took him out of school and gave up a career in medicine to homeschool him when he was eight.  It's a very nice article, and it's wonderful news, and inspiring.  But for some reason, it bothered me a great deal to read.

I've read plenty of articles about autistic people who have done great things, and they often include a parent's huge devotion helping them along.  I think this one just hit my eye at the wrong time.  Janey did so well over vacation, and I read this just as I was worrying about her going back to school.  There is no way I'm going to homeschool Janey.  I couldn't do as good a job as the schools do, and I need the respite desperately.  What hit me was the devotion of the mother.  Truthfully, I feel I'm pretty devoted to Janey.  And looking at all the parents I know of kids with autism, either in person or through this blog, there is so much devotion out there it's incredible.  But it doesn't all lead to Rhodes scholars.  And I'm not saying there shouldn't be articles about the times it does.  There should be.  But sometimes, despite my better judgement, it makes me feel like I somehow didn't devote enough, or didn't put my devotion into the right ways to help Janey.

Both my flashback and my reaction to the article are parts of the stress that I think most of us parenting children like Janey feel.  No matter how well things are going, we remember when it all fell apart.  No matter how hard we work at being good parents, we can find examples that make us feel like we didn't do enough.  I wish I had a pithy thought to put here, something to reassure myself and everyone else reading this that everything is going to be fine, that we are doing all we can for our kids, that we shouldn't have the fears and doubts we do.  But I don't have a thought like that.  I have only a hope that if you've also suddenly flashed back to the darkest times, if you've read an article that makes you feel like a slacker, that if you have lived this life too, you're not alone.

The tension of a guard never fully let down

The last few weeks, I've been very tense.  It's strange, because, as I've written recently, Janey has overall been fairly calm.  She's had an increase in crying the last few days (jinxes are real, as all Red Sox fans know!), but my tension predated that behavior spike.  As I lie awake at night lately, I think "Why in the world are you so tense?  Why can't you relax?"  Last night, I answered myself.  I said "Think about the last eight years of your life"

In the last eight years---well.  Janey had her horrible regression and was diagnosed with autism.  We had countless days of all-day crying and screaming, many nights with no sleep at all.  The school our children had been attending for many years and the school I thought Janey would go to until age 22 decided they could no longer handle her level of disability.  After about six months at her new school, she went into a crisis and wound up first boarding at Children's Hospital for six unbearable days and then spending three weeks in a psychiatric hospital.  Then, the next year, after three days of increasingly severe symptoms, she was diagnosed with a burst appendix, had emergency surgery and then weeks and weeks in the hospital with complications.  Last January, a bad flu and pneumonia landed her back in the hospital for a few days.  Top that all with life's regular stresses---two sons in college, financial challenges, the everyday this and that and the other thing....well, let's say that if I wasn't tense and stressed, it would probably mean I hadn't been paying attention.

But why can't I relax on days when everything seems fine?  It's because my guard is never, ever fully down.  A day that seems just fine can turn on a dime.  I can get a call from school that Janey is sick, or having a behavioral crisis.  Janey can come home screaming and biting.  We can have one of our occasional sleepless nights.  Janey can get a fever, not be able to tell us why and end up suddenly critically ill.  We can have a day where she is as sunny as she can be suddenly turn, for reasons we don't understand, and just like that we are dealing with a level of chaos some people might not see in a lifetime.

Stress in parents like ourselves is something that is very hard to understand unless you've lived it.  It's the reason sometimes it might seem like we overact to small things.  It's the reason we are not always quick to be excited about what seems like good news.  It's the reason we are often not ready to try new things, go new places, take any risks.  It's the reason some days I have the near overwhelming urge to get into the car and drive---drive far away, away from my life.  I can't and won't ever do that, but if I did, the thing of it is that I am sure the stress would follow me.  If Janey someday lives away from home, I know from hearing about others with autistic kids living away from home that you still can't ever relax.  Things can fall apart fast, wherever your child is.

And so---what can we do?  We can be easy on ourselves.  We can accept that stress, tension, worry, all those, are always going to be part of our lives.  We can treat ourselves when we can to life's little pleasures, without an ounce of guilt.  We can drink our coffee, play our games of Scrabble, watch our mindless TV, read our escapist books.  We can call friends and laugh like crazy over the phone.  We can let sleeping dogs lie, let our child watch that video for the 100th time while we sit and do nothing.  We can stop thinking, pretending and having to present an image that our lives are more in control than they are.  We can accept that we have in some ways been dealt a challenging card, and admitting that doesn't mean we don't love our kids, that we aren't good parents.  We can support each other.  And we can keep on going.  That last one isn't a choice, but some days, it's all we can really do.

Staying sane while being there for Janey

Janey has calmed down a bit from some of the hard times last week.  It seems like PMS played a role, and it's kind of good to know there might have been a reason---so often, we have no idea at all what is upsetting her.

My son Freddy is home this week, and we've been talking a lot.  He's a great guy to talk to!  One talk we had made me reflect on my life quite a bit.  He talked about how when he went to college last fall, it was hard thinking about our lives back home, thinking about how tough our lives can be.  My instinctive answer was "My life is fine!"  Of course, ask me that on a bad day with Janey or a day after no sleep, and I'll give you a different answer.  But I bounce back pretty quickly, and when others have said similar things to what Freddy said, about what a hard life I have, I've given them the same answer.  I'm not being a martyr when I say most of the time, my life is pretty good.

I've been thinking about what I do to stay sane when stress hits, and the last few years, with four hospitalizations for Janey, her increasingly self-injurious and sometimes aggressive behavior, two boys starting college, the challenge of her sometimes not great sleep...there has been some stress.  But out of necessity, I've figured out things to do that help.

If I were giving advice about stress relief, the main thing I'd say is to find something you can do EVERY day, do without leaving the house and something you can cram into whatever free moments you have.  It's fine to get relief from something like hiking or shopping for clothes or going to yoga classes or whatever, but if something involves leaving the house, finding childcare, spending money...many of us with kids like Janey are NOT going to be able to do that thing regularly.



I've got quite a few at home go-to hobbies.  I love words games.  I play a lot of Scrabble on Facebook, and a lot of single player word games on the iPad.  I have also gotten into SongPop recently (a name that tune type game).  I love photography, and I take a lot of bird pictures in my back yard, as well as flower pictures and pictures of Janey.  Gardening is another stress reliever.  I can sneak outside when Tony is watching Janey or when Janey is at school, and something about digging in the dirt and watching seedlings grow is simply amazingly relaxing.  And I read.  I read a very, very lot.  I have a huge list of books lined up to order from the library, and as soon as I get one batch, I order the next, in order to never be without a book!

All of the hobbies I have are low or no cost.  You do have to buy seeds and a camera to grow flowers or take pictures, but once you do that, there isn't a lot more to buy.  Word games are free, and library book reading is too.  And all of those hobbies can be done in a few minutes here and there, stopping when I need to stop.

I am probably lucky I am basically an introvert.  I don't mind spending a lot of time at home or in fairly solitary pursuits.  I socialize on Facebook or on the phone, mostly.  I do wonder sometimes if having Janey has made me even more of what I already was---a little bit of a loner.  But even being social can be, with some adjustments, something I can do within the restraints of life with Janey.  I have an internet full of people to talk with, if I don't mind the lack of face to face.  I can go to support groups, and do at times, where I can talk to people living lives similar to mine.  And I sometimes actually get away, for lunches with friends while Janey is at school, or as I did recently, for weekend getaways when Tony can watch Janey.

Sometimes, the best times are WITH Janey, when her mood allows.  At times, we put on music and dance to it, or order takeout and eat with glee all together, or go for long car rides to see the state, never getting out of the car but enjoying the scenery.  These are all things that Janey loves and we love too.

There are days when all of this is not enough---days where Janey screams all day and even 5 minutes to play Scrabble is not possible, where the garden goes to weed and the camera stays in the case and the books don't get read.  Those are tough days.  As the years go by, I realize that I need to keep myself sane.  If it comes down to grabbing a minute to do something I enjoy or getting that extra pile of dishes done, I often pick the enjoyment option.  Some people might be able to defer fun, but those of us with kids like Janey can't always count on being able to do that.  It is good for everyone, Janey included, if I am happy, and as time has gone by, I feel less guilty about doing what I need to do to be happy.  I hope all of you have found ways to enjoy the time you have to enjoy.

Back from the end of my rope

Last week was school vacation week here in New England.  It couldn't have come at a worse time.  Janey had been in a mood for a few days when it started.  She was on edge, screaming much of the time, not happy at all.  Then, the first weekend of vacation, it got extremely cold, the coldest it's been in Boston since 1957.  It wasn't the kind of weather we could get Janey outside in.  She was displeased.  She spent a few days switching hysterically from one video to another, screaming when we didn't immediately understand her, biting her arm and generally being very, very unhappy.

I had planned for quite a while to get away for a few days during the vacation week.  Tony had taken the week off work, as it's been a traditionally very hard week for years.  I was planning to go up to Maine and visit my parents on Wednesday, and then Friday have a long-awaited special treat getaway weekend at an inn as a early birthday gift from a dear friend (thank you, Julie!)  I was (and am) looking down the barrel of, let's just say, a milestone birthday, which would have been stressing me without any tough Janey times.  And I kept thinking---I can't go.  I can't leave Janey here with Tony alone.  But on the other hand, I kept thinking---I have to go.  I NEED to go.  I felt at the end of my rope, hanging on by a single thread.  Each time Janey screamed, I tensed and felt waves of stress and despair wash over me.  I felt like I couldn't take one more second.  But I kept telling myself "I can't go.  I can't leave Tony to deal with this"  Tony, who I will right now nominate for husband and father of the year, kept telling me I should go, that he would be okay, that he'd manage somehow.  It's hard to even explain my state of mind as I tried to decide.  It wasn't sane.  But finally, after getting Tony to promise that if it was too hard, he'd call and I'd come back, I did go.

And Janey was fine.  Not perfect, but fine.  She often seems to do a little better when it's just one of us with her, because all the attention is focused on her, we think.  Tony took her for lots of rides, changed her videos as demanded, and slept when she slept.

Janey views the sunrise

It took me a little while to calm down once I left.  I took a bus to Portland to meet my parents, and the bus ride helped.  I sat and decompressed, and played word games.  By the time I reached their house, I was much, much better, and by the next day, I felt great (although I woke with a horrible headache, probably from all the days of stress)  It was great to have a few days with my parents, and then a few days at an amazing inn with my friend and her fiancee.

Crescent Beach, Cape Elizabeth, Maine

Tony and Janey came up to the inn on Saturday night.  Tony got a chance to relax hanging out with the friends, and I took care of Janey, and by the time she got there, I was looking forward to seeing her very much.  I felt able to cope again, to think of ways to keep her distracted and happy.  We had several showers in the room's huge shower, baths in the big bathtub, we walked to the empty beach at sunrise, we spent time at the bonfire outside in the evening.  We had fun, because I was able to relax enough to have fun with her.

I learned a lesson, one I've tried to learn before, but I think this time it really will stick.  Sometimes, I really do need to take care of myself to be able to care for Janey.  I don't need to be a martyr to care for Janey, to love her.  We don't have a lot of respite, but Tony and I can switch off at times and allow the other party to get a breath.  And Janey will manage.  The toughest times don't last forever.  They come and go.  And I am much better able to to be a creative, patient mother if I am not at the edge of the cliff.

Now, to face tomorrow's birthday and the start of being AARP eligible.....

No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.

Don't read this if you have a newly diagnosed child or if you don't like negative posts!

As the title says, if you are new to the world of autism, or if you are triggered by anything but positive words about living with someone with autism, please don't read this.  I have been thinking lately about political correctness in writing about autism.  There are things that aren't supposed to be said.  It's not that anyone says I CAN'T say them---it's more I self-edit what I write, but I do this to avoid upsetting people.  I don't want to discourage those with a newly diagnosed child.  Janey's course is not typical.  Most children with autism will make a lot more progress than her.  And I don't want to hurt the feelings of those people WITH autism who read this blog, because the ones that have introduced themselves to me are wonderful people, people I care about.  But after a tiring day like today...well, I kept thinking of a few things I want to say about life with autism, my particular life with autism.

1.  There are days your child is going to drive you crazy, make you cry, make you despair.  There are days that all the positive thinking in the world can't cheer you up.  Some days, you can be the autism super-parent.  Other days, you just can't, and you are going to just get through the day, however you can.

2.  Your child might never be fully toilet-trained, despite all the books and articles and advice and school interventions and timers and special underwear and everything you try.  Your child might be 10 and still in pull-ups.  They might actually pass from pull-ups to Depends type underwear.  I'm talking about you, Janey.  They might just never get it completely at all.  

3.  Your child might sometimes be aggressive toward you.  They might hit you, bite you, scratch you, bend your fingers, really, really hurt you sometimes.  There are many reasons for this, and I do understand the reasons, but when you are at the receiving end of a huge bite, you aren't thinking reason.  You are thinking pain.

4.  It's very easy to get your child evaluated.  It's quite easy to get involved in medical studies.  What is not easy to get is respite or help.  I could have Janey tested every day of the week, pretty much, and between the two insurances she now has, it would be covered.  But no insurance or financial help covers even one second of respite.  I could get people to come in the house, while I'm here, and help with Janey, mostly likely from what I've heard, but I'll say right here---that isn't respite.  That is not what I need help with.  That is like having company, company I need to talk to and entertain and clean up for.  That is more stress, not more help.  

5.  Your life gets very, very restricted.  I talked to a fellow autism mother about this, about how her non-autistic daughter might get a chance to be in a once in a lifetime performance, and all she can think about is "Who would watch my daughter (the autistic one) so I could actually go see her?"  I am thinking that currently about my son Freddy's high school graduation.  One night, maybe 3 hours.  And even that is going to be hard for both Tony and I to go to.  

6.  You will get in touch with the less kind parts of your own personality.  I feel resentment, sometimes, toward people with non-autistic kids.  I feel angry if I don't feel like they appreciate what they have.  I don't feel this all the time, but when I do, the depth of my feelings surprises me.  I don't want to be that person, but that person shows up, unbidden.  

Now, I could go on and on.  But I won't.  All the parts of life with Janey are not nearly this bleak.  I adore the girl, I can say that without a second's hesitation.  But life with her is hard.  It has wonderful moments, I have met so many of you wonderful fellow autism parents out there, I have met far more than my fair share of fantastic teachers and therapists, I have delighted in Janey's uniqueness.  But just saying those things is not speaking the whole truth.  I think about the emails I sometimes get from parents who are very, very discouraged, and I think part of that is the hesitation we all have to speak the other part of the truth.  It's a tough road we travel.  Although I have a near-compelling urge to not end on a negative note, I will, just this once.  It's a very tough road.

After the Blizzard

Janey just took off on the school bus, her first day of school since Monday.  As you probably know, we had a blizzard here this week.  And as you probably can guess, Janey did not enjoy the break in the routine much.

The first few days were manageable.  Tony was home, as his work was closed too, and together we all worked hard to keep Janey busy and distracted.  There were plenty of times of screaming and tantrums, but some better times too---watching videos, reading books and as often as we could, tiny trips outside to see all the snow and to give her a change of scenery.

As is often the case, though, after two days, Janey had had enough.  I think she probably felt she had lived through some bizarre middle-of-the-week weekend, and Thursday, it was supposed to be over.  Whatever it was, she woke up in a terrible mood yesterday.  Before 5 am, she had lashed out at me over and over---hitting me, bending back my fingers, kicking me and trying to bite me.  It was not pretty.  When Tony came to help, she hit him also, which is less common.  Her rage went on and on, and Tony eventually decided to take another day off.  I was upset he was going to miss work, but to be truthful, I don't think I could have handled her all day by myself.

The day was very long.  Janey would have a calm period, but then inevitably, we'd have to say no to some request, and she would freak out.  Or she'd start her "snuggle on Mama's bed" routine, which has become a complex dance of us moving from one bed to another over and over, with rules that are known only to Janey and which I constantly break, causing her to be furious.  I lie down for a minute with her, and then she said "Want to snuggle on THAT BED OVER THERE" which sometimes means I'm supposed to move to that bed, sometimes means we both are, and sometimes means just she is.  I guess wrong a lot.  It might sound funny, but repeated twenty times a day, it isn't.

I'm sure you might be reading this and thinking "Boy, they give in to her a lot".  Well, we don't, really.  She makes requests all day every day, and probably 90% of the time, the answer is no.  But when it's something we CAN do, we try to do it.  However, it's very rare that that actually works.  But what are we supposed to do?  If Janey asks to hear a book, after being told no to all kinds of other things, I try reading her the book.  Of course, I read it wrong, or read the wrong book, or read it at the wrong pace, or say the words a little differently than she is expecting, and she rages.

More and more, Tony and I feel overwhelmed.  Caring for Janey is a two person job at the least---often more.  We are left with very little time for the minimal needs to live.  It's hard to find time to cook, to do chores, to take a second to regroup.

We are pursuing help.  I've taken some steps hopefully to work on the Mass Health mix-up, and we have put in an application for the Lurie Center at Mass General hospital---a clinic we've heard good things about.  We are going to have a meeting at school soon.  We are ready to accept in-home help even if it isn't respite, if we can get that.

But our experience with Janey's hospitalization has left us realizing that the help out there is pretty limited.  When the hospital discharged her with NO help in a discharge plan---well, that was an eye-opener.  We need respite, in whatever form we can find it.  We are open to a private or residential school, if such a thing is possible.  The short school day she currently attends, although it's a wonderful school and is staffed with great people, is not enough for her.  We have realized that in the last month or so.  This current setup is just not working.  None of us are living a life that feels anywhere close to sustainable.  But saying all that is very, very different than actually getting the help, despite what seems to be the perception.  The state agency that deals with developmentally disabled kids has nothing to offer at this time but a referral back to the local autism agency.  They are well-meaning, but offer really only things like occasional parties outings.  Even if the Mass Health is fixed, at this point, they don't cover autism services, nor does our other insurance.  There is simply almost nothing available for help.

That truth--that so little help is available---is something very hard for people not living this life to accept.  I think sometimes people want to think there's all kinds of help we are not taking, out of pride or stubbornness or something.  I think people feel better thinking there is help there which we could get if we REALLY wanted to.  But those of us living the lives of autism parents know the truth.  There is not help, not meaningful help.

I don't want to be discouraging, but the truth is, I'm discouraged.  I'm discouraged most of all for Janey.  She is not happy.  I'm discouraged for my sons, who must deal always with turmoil at home.  I am discouraged for Tony and for me.  Increasingly, Janey's needs are standing in the way of such basic things as making a living, sleep and health.  The stress we feel at all times is indescribable.

And so, after the blizzard, we are left with the reality of our lives.

A Stronger Word Than Stress

As I was thinking about yesterday, I was trying to think of a word I am not sure exists.  What word could describe a feeling that the word "stress" doesn't seem to cover?  What word is there for a day that felt like more than the mind was designed to take?  I am not sure.  But I know if such a word did exist, that many of my fellow autism parents would like to use it, because I know I'm not alone.  We deal with uber-stress on a regular basis.  We all have our ways of dealing with it.  I will write about my day, because other options that start to seem desirable, like hard core adult beverage time or getting in my car and driving thousands of miles away are probably not productive.

The day started with Janey getting on the bus.  She seemed happy enough.  However, as soon as the bus got to the school, her bus aide called to say she had had a very, very tough time during the ride.  She bit herself, hit him, got on the floor of the bus, screamed---all of her routine when she is completely out of control.  He was shaken, and made the suggestion "Maybe she needs to go back to the hospital?"  I don't blame him for having that thought.  I called her teacher, to see if I needed to go get her, and the teacher called back to say she was okay at that moment, and indeed, she made it through the day, with a few screaming periods, but she made it.  Needless to say, however, I spent the whole time she was at school on tenterhooks, waiting for a call that things had gone badly south.

After school, we had an appointment with Janey's psychiatrist.  This was the appointment that Bradley Hospital made as a followup.  They had said it was for the day after we got home, but something got messed up along the way, and it was actually a week after we came home.  When checking in for the appointment, I happily took out our brand new MassHealth card, the card that I had thought Janey qualified by means of being disabled, the card that would help us with co-pays and therapies and from many of the stories of hype I'd heard about it, would basically open a world of help up.  I had always resisted getting this card.  Partly it was that I didn't want to ask for help, but partly it was because I have a huge fear of bureaucracy.  But I was reassured it was a GREAT thing to apply for, nothing but good, and when the card arrived, I allowed myself to feel hopeful.

Well, the staff tried to add the card to Janey's record.  They made some calls and then looked at me with huge alarm.  I didn't totally understand what they were saying, but basically they said the card was for PRIMARY insurance, not SECONDARY, which seemed to make a huge difference.  We already have primary insurance for Janey, our family Blue Cross, and this state insurance was supposed to be a supplement, but from what they were telling me, it had been processed somehow as "family assistance" and that meant we had two primary insurances for her, which from the looks on their faces, was a Very Bad Thing.  They said I needed to immediately call the number on the card and get everything straightened out, or Very Bad Things would happen.

So I went into Janey's appointment feeling terrified about that.  I think the psychiatrist could see we were at the end of some very long rope.  He asked how Janey's behavior was since coming home from the hospital, and we basically said it was pretty much no better.  We wound up discussing a new medication, the long considered "mood stabilizer"  I won't get into the whole ins and outs of it, but basically there seems to be quite a bit of conflict in the psychological world about what would usually be termed bi-polar disorder, and whether it possibly might be something Janey might have.  I am not up to thinking about all the debate, but I will say it's long seemed like Janey has manic times and depressed times.  At this point, we are ready to try something new.  How she is right now is not a way I would want her to have to live long term.  So---we will be trying this new medication.  It will require careful monitoring at first, and I have to say at this point my hope levels aren't great, but we will try it.

So---after all that fun in the day---a breakdown on the bus, a huge insurance snafu and a new possible diagnosis for Janey of a major psychiatric disorder---I thought I would cap off the day with trying to call the Mass Health people.  Of course, there was a half hour hold, and of course, once I got someone, and again was on and off hold for half an hour, the phone somehow got hung up.  I was on the cell phone, and I don't know if it was me or him.  But that truly did add a needed final touch to my day of the word beyond stress.

All that was left was Janey screaming a lot at night off and on, and hitting me hard a few times.  She fell asleep about eight.  Tony had been out getting William home from college.  The day ended listening to my two amazing boys joking around and discussing world events.  I was able to fall asleep by pushing aside until today the day's worries.  I listened to them talk as I drifted off.  Even the toughest day has moments that are golden like that, and I need very much to keep remembering that.

Autism Mothers Aren't Chosen

If you are the mother of a child with autism, the news lately is a little tough to hear.  I don't want to and won't comment on the recent horrible happenings involving mothers of autistic children, because I am not in a position to do so.  And that is my point here.  Mothers of children with autism are not a homogeneous group.  We are not a single type.  We are not chosen.  We share something very major in our lives---we are the mothers (and fathers, but society and the news seems to focus on mothers) of a child with autism.  But aside from that, we are all very different people.  We react differently to many things in our life, including the stresses of raising our children.

When I read about the mothers that break, I feel like I am supposed to have some inside insight into them.  I don't, really.  It is like when I read about any crime or horrible event.  I figure there are so many factors involved that I simply can't know or understand that I really don't know what happened.

Right around the time Janey was diagnosed, I was on the jury for a high profile murder trial, of a foster mother whose foster child was killed.  We eventually found her guilty of manslaughter.  I can tell you that after hearing all the evidence, and after much, much thoughtful deliberation, the amazing people on that jury felt for everyone involved---most of all the child, of course, but also the foster mother.  She was not a demon.  She made extremely poor decisions, and she paid for them.  But the experience left me realizing that we usually have no idea what life others live.

The only autism mother I can truly speak for is myself.  And I can only speak for myself at the moment in time I'm in.  I know there have been moments of despair, and my thoughts at those moments always went to escape---my own escape.  I thought of getting in the car and driving away and never coming back.  I thought of escaping into death, my own death.  Those thoughts were fairly rare, but they happened.  What helped me out of those moments in the abyss---knowing I had a family who loved me, knowing that there is always a hope for a better tomorrow, and often---Janey herself.  That is the biggest one---how even after the toughest times, my delight in her can make me happy like nothing else.

Autism mothers aren't chosen.  They are parents.  The idea that somehow they are special, different, miracle workers---those are dangerous ideas.  They are dangerous because of the expectations they create.  IT IS NOT OUR JOB TO FIX OUR CHILDREN.  That thought is what I think causes more despair among parents of children like Janey than any other.  We all have read about amazingly devoted parents who "cure" their kids.  Maybe this has happened, once or twice in history.  But most of the time, the children that get "cured" would have done so anyway.  I truly believe this, with all my heart.  I don't talk about it a lot, because it is not my story to tell, but my older son could be the subject of one of those "cured" fables.  I didn't cure him.  I am not going to cure Janey.  It IS my job to do what is the job of any parent---to give her a good life as much as I can, to love her and cherish her, to feed her and clothe her and see that she gets an education.

When the world understands that autism mothers are not a special, exalted breed, but just parents who have been dealt a more challenging hand than most, I think society will be more inclined to help us.  When the world understands that autism is not some mystical, mysterious state of being, but is more like diabetes or cystic fibrosis or other childhood conditions---not the fault of a parent or a child, not something a parent or a child can cure, not something that makes a parent or child better or worse, but a condition that requires help and services to deal with, I hope that help will be provided.  It will not prevent all tragedies, even then, and that is because every person, every child, every situation is different.  Please remember that when you hear the news.

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.

Stress Times Ten

Just a brief entry here.  The past few weeks have been stressful.  Tony, my husband, is a federal employee, and therefore has been not working for the past two weeks, with no end in sight.  I don't generally let money issues stress me, but just having our routine changed and the uncertainty is stress enough, and the lack of pay is not fun.  We had two appointments last week regarding Janey.  I'll write more about them when I can, but they both upset me in different ways.  Janey had an off and on tough week.  This weekend, however, has been great with her, but unfortunately not with her brother William.  William called on Saturday and said he was homesick and wanted to come home for a while from college.  We went to get him, and it was apparent after a short time home that his anxiety level was unbelievably high.  He's having a very tough time adjusting to campus life.  He's made a good amount of friends, but Brandeis is a very different environment that he's been used to in his urban high school or at home with a loud Italian family.  I went back to campus with him yesterday and spent some time, and even I felt like fleeing from the quietness and the intense and focused social interactions.  William is committed to staying in college, and we are going to support him all we can.  But I have a feeling it's going to be a rough ride.  He worked so so hard to get into a very good school, and it's breaking my heart he is feeling so sad and overwhelmed.

And so we go on.  As with all of you out there on this journey of special needs parenting, or indeed parenting at all, we put one foot in front of the other each day and go on, because that's what we have to do.  We go on with hope that tomorrow will be easier, that our children will be happy and thriving and living the best lives they can.  My religion has left me, for the most part, but there are no atheists in foxholes, and I prayed a bit this weekend, to whoever might be listening, to keep my kids safe and happy.  I truly can ask no more in life but that.

Total Janey Time

Starting this week for a while, Tony has arranged his schedule at work so he can do the afternoon pick-up of Janey.  That is so wonderful it's hard to describe.  The drive back and forth to school has become increasing tough over the years.  I'm into my 14th year making that commute, through busy parts of Boston, with crazy Boston drivers, and lately, more often, a passenger that is disruptive, my Janey.  I feel myself re-energized just knowing I don't have to do that drive twice in a day.

I've decided, when Janey does get home, it's going to be Total Janey Time.  I've always thought one of the most important parts of the day as a parent is when kids first get home from school.  It's one of the reasons I haven't worked outside the home.  Kids need to reconnect after school, even older kids.  They need someone to listen to their stories, someone to take their complaints, someone to feed them.  I've loved being able to be that someone for the boys, and I've realize that has been missing with Janey, mostly because by the time I get home with her, I'm done for.  I often pass her off to Tony and rest a little, and she often gets crazy.  So as a trade-off, now she's going to get my best when she gets home.

What is Total Janey Time?  It's doing things with her that she loves, without trying one bit to make it a teaching time, a molding social skills time, a time for anything but fun and comfort.  It's what I've realized Janey is requesting when she constantly requests to "snuggle on Mama's bed"  And it's what I often don't do.  I seize on time with her to try to either teach her something or work with her on behaviors, or just try to do something with her that's MY thing, not hers, like reading a book or coloring.  Total Janey Time means snuggling her, playing the little games she loves with her, singing to her and just letting her be her.  We play Creep Mouse, we put our faces close together until it looks like we only have one eye, and I say "you only have one eye!" and she laughs, I sing clips of songs I know she loves, like "I went to the animal fair" or "John Jacob Jingleheimerschmit"  I don't try new songs or new games.  I clap her feet together and sing "chicks and ducks and geese better scurry", which I did once when she was about 3 and which she instantly loved for some reason.  We say our little routine "Let's talk about how much I love you!  I love you a..." and she says "million"  I say "I love you more than..." and she says "chickens!"  It makes no sense, but it makes her happy.  It's bonding, it's fun.  It's also about like you'd play with a toddler, and that is why I sometimes resist it.  It seems like it moves nothing forward.  But why shouldn't she have a time each day that's for HER?  She lives in a world she often doesn't understand, a world that I am sure is startling and stressful for her so often.  We all have things we do to center ourselves, to get back to feeling relaxed, and Janey needs that too.

After the first few days of this routine, Janey came in the door, and raced as fast as she could to "Mama's bed", a huge smile on her face, waiting to start the routine.  That was wonderful.  It's a huge reminder that we all need a time and place to feel completely accepted as we are.  It is what I think often gets left out of the day of a child with special needs.  We all want to help them learn, to help them understand and relate to the world around them, but that's a lot of work for them.  They need as much as any of us do to just have downtime.  I'm going to try hard to give that to Janey more consistently.

Tired, just...tired.

Lately I've been very, very tired. It could be a health issue, but I don't think so. I think it's more likely mental exhaustion, maybe masked depression. I know there's nothing more fun that reading about someone else's depression---big sarcasm alert there, of course. I try very hard to stay positive, and on the outside, and even to myself, I can feel that way a good deal of the time. But then there's the tiredness. It's the kind of tiredness where I can sleep what I think is a good eight hours, but then during the next day, I can't think of much else but napping. I can't get work done, or concentrate on much. It's a little much.

This article talks about stress and fatigue in mothers of autistic kids. It's very true. I can't say it's like being a combat soldier---that's probably going a little far. I don't worry about being shot at all the time. But it's a 24 hour a day job. The two extra hours of caregiving a day seems a little low to me. Every single hour except when Janey is at school is an hour of caregiving, and the intense kind. If Janey is out of my sight for more than half a minute, I am alert and going off to find her. It's literally never-ending. At any point, she might decide to cry for hours, and that is a lot like when a baby has colic, I realized the other day. I had two babies with colic, and I found a book about it in which a Vietnam vet said it was worse than anything he's experienced in Vietnam. Again, I don't think it was that bad, but it was pretty hard. It's a child you love so much crying, and you don't know why. When it's colic, it's for couple months. When it's autism, it's forever. When Janey tantrums and cries, I almost always don't know why. And you can't do what they always say to do if you are overwhelmed by a colicky baby. You can't put her in a crib and walk into the next room for a few minutes (not that I ever much was able to do that with babies, either). You have to make sure she doesn't hurt herself, or wreck the house, or try to go out the door. Even when she's happy, the alert doesn't go down. She tries to eat anything. She gets notions to throw things. She gets so happy she gets crazy-happy and can fling things around in excitement.

Writing this, I can understand my own tiredness. But understanding it and letting myself give in to it and rest are two different things. Something in me tells me I have to be productive, that just resting is not an acceptable way to spend time. The opposite impulse, to get the rest I need, overwhelms me often, and that creates guilt. I rest, but I don't relax, as I feel guilty all day I'm not getting more done.

I don't have a solution here. It feels good to write about it, to work it out in my mind a little, but I know it's not going to change any time soon. Maybe that's all I can do---keep writing and reflecting, and possibly someone out there in the similar situation will know they are not alone.