The Easter Bunny Hunt---A Story In Pictures

The quest begins.

 Those of you who have read this blog much mostly know we don't give Janey chocolate, because when we do, especially after noon, she doesn't sleep.  At all.  Whether it makes sense or not, it happens, and it's why I don't discount anyone's food issues or theories.  It doesn't seem like just a little chocolate could have that big an effect, but still, it does.  However, we make one exception.  There is nothing on earth Janey likes more than a chocolate bunny.  She often asks for them at random times, like the middle of the night in the middle of the summer.  So, for Easter, she gets a bunny.  We usually get it on Easter day, not to have it around the house ahead of times for her to find and eat at the wrong time.

Empty Rite-Aid bunny rack!

We set out this morning to get her the bunny.  The first place we went was the Rite-Aid.  It's where we get prescriptions, so we are there a lot.  The pharmacist said a big hi to Janey, and she smiled at him.  But...no bunnies!  The Easter area was completely empty of any chocolate rabbits.

Picking out salami

So we moved on, to the grocery store.  Janey and Tony often shop there together.  We picked up a few other things we need before we looked for bunnies.  High on the list, as always, was salami, Janey's hands-down favorite food.  Janey picked out some with Tony in the main salami area, and then ran off to a nearby auxiliary salami area to get another kind she wanted.  After we'd loaded up on salami, we got a few other things, and saw a worker who is always so sweet to Janey, and told her Happy Easter.  She has a grandson with autism, and it's always fun to have her talk to us.

Auxiliary Salami Area

Finally, we went to look for bunnies at the grocery store, but again, no bunnies at all!  It was like there was some huge run on bunnies!   Janey saw some Easter cakes that looked interesting near the cashier, but we resisted them.

No bunnies at the grocery store either!

Some interesting cakes

Salami choosing

 We went to the quickest line, and missed going to the line of a cashier who is yet another Janey fan, but we waved to her, and Janey gave her a smile.  Out by the car, Janey picked which salami to first try. 

We continued our quest at the Walgreens, and there, finally, we hit pay dirt.  We found bunnies!  Janey picked out the one she wanted---not the biggest one, but a smaller sweet little guy.  The cashier there didn't know Janey, but was so sweet to her, talking while realizing she probably wasn't getting a response.  She asked Janey to give her a high five, and Janey did.

The whole quest made me happy.  In our little part of Boston, where Tony has lived all his life, where Janey has lived since birth, we feel included.  Janey is part of the community.  She is valued and treated with kindness and respect.  What more could we ask?  Happy Easter to all of you who celebrate it, Happy Passover to those who celebrate it, and Happy Day to everyone!

Finally, bunnies!

Bunny time!

If Janey had her way about holidays...

This morning, Tony left very early to go to New York State to get Freddy and his friend Cheryl and bring them home for Thanksgiving.  This was a change in routine, as I got Janey ready for school and got her on the bus on my own.  Janey never says much in the morning, but today, she said even less.  She went through the stages of getting ready fairly cooperatively, but she kept looking at me with a confused and wary look.  I explained to her as best I could that Daddy was getting Freddy, that he'd be back later, that her brothers were coming home today, that school was going to be shorter than usual (they have a half day), that we'd have a nice big meal tomorrow, that school would start again Monday---all that.  And I thought, as I've had many times, that Janey would prefer there to be no holidays at all.

I don't know that for sure, of course.  But I strongly suspect it.  Holidays, to her, are upsetting changes in the regular routine.  They involve Mama and Daddy doing things they don't usually do, and not being available when she expects us to be.  They mess up the school days and weeks.  They have people trying to get her to do odd things, like blow out little fires on pastry, hang socks up at night, go through many steps to open up something she doesn't want or care about, dress up in odd costumes and go to houses and ring doorbells---a lot of weird stuff.

I think sometimes if Janey was an only child, we'd pretty much have birthdays and Thanksgiving and Christmas be much like any other day.  There are parts she likes, of course.  Christmas music is one of her favorite things on earth, and in fact "Frosty the Snowman" got the only smile out of her this morning I could get.  She enjoys a good cake as much as anyone.  And she'll be glad to see her brothers.  But overall, holidays stress her.  But she isn't an only child, and even if she was, Tony and I are people too.  We'd want some holidays in our lives.

The combination of autism and holidays, or Janey and holidays anyway, bring on two big feelings for me---guilt and sadness.  The guilt comes on, strangely, when I do things to make holidays less stressful for her.  If I don't get her more than a token gift for Christmas, because she hates opening presents and has no interest in 99% of anything material, I feel guilty that she has nothing under the tree.  If I don't take her trick-or-treating, as I didn't this year, I feel guilty that she is missing out on something I loved as a child.  The guilt is foolish, I know, but it's there.

The sadness---that is on me.  It is my sadness.  Janey is not sad that she doesn't fully get and enjoy holidays.  But I am.  Holidays, in a lot of ways, are for parents.  We look forward to seeing our kids pull treats out of the stocking, gather huge piles of candy and sort them, blow out candles as we wipe away tears and think about how fast they are growing up...holidays are the Hallmark moments of parenting.  And I admit---it makes me sad, in a completely selfish way, that Janey would prefer to skip so much of what I want to experience with her.

Thanksgiving is one of the easier holidays.  It involves mostly eating, which Janey certainly does like.  It starts the season of Christmas music, which can never start too soon for her.  She even sometimes likes the parade on TV a bit.  So, we'll try to keep the day as routine as we can for her, while sneaking in bits of the parts she will at least tolerate.

Happy Thanksgiving 2016 to all of you.  I am incredibly lucky to have found this community, and I am thankful for those who read this blog, extremely thankful.

Fourth of July

 Happy 4th of July from Toledo, OH!  It's been a wonderful vacation so far.  The best part, of course, has been getting to meet my friend Michelle and her family in person.  Michelle was the first friend I made through this blog, and her support, advice and friendship over the years has meant more to me than I can say.
 
Lindsey is Michelle's 16 year old daughter, a girl who is much like Janey.  What a remarkable and cool person she is!  She is non-verbal, but that certainly doesn't mean she can't communicate!  I think she said more to me in the first 10 minutes I was with her than many people do in a year.  Her facial expressions and postures and attitude are astonishingly able to say what she wants to say.  One of the coolest things was watching her watch Janey have  a meltdown.  She said with her face "I love this!  Janey is giving them hell!  And it's not me---I'm just getting to sit back and watch!  Go, Janey!"

It's been terrific meeting Michelle's husband, too.  Fathers of our girls are the unsung heroes, and Dan is one of them.  Like Tony, he is fully there for his family, and Janey has taken to him instantly.  And Leah and Jacob, Lindsey's siblings, are amazing kids in their own right. 

And Michelle!  I think we could talk forever and never run out of things to say.  She has lived my life and I hers.  The cool thing for me is she's a little ahead of me in the journey, as Lindsey is older.  When she told me that it would get easier with Janey, I knew she really knew.  She gets the meltdowns and the isolation and the frustrations but more than anything, the love we have for our girls---the overwhelming love.

How has Janey been doing?  Pretty well, overall.  There have been meltdowns and arm biting here and there, and when she's gotten restless there have been a lot of walks and car rides, but she has spent a lot of time at Michelle's house, enjoying their hospitality, and we had a great swim this morning, lots of iPad hotel time, and a lot of doing things we do at home, in different surroundings.  It's making Tony and me feel hopeful that when he retires and we can travel even more, Janey will be up for it.

Today we are going to the Toledo Zoo.  One of our dreams for Tony's retirement is traveling around to some of the top zoos in the country, and Toledo's is one of them, so we are very excited!

 Toledo is great!  The weather has been so lovely, dry and warm but not hot.  The big Ohio skies and farms and friendliness make me proud to be an Ohio native, although Maine of course will always be the home of my heart!

I'll write more about the trip soon---I don't like writing on a laptop, so I'll keep this fairly short.  I hope everyone has a wonderful 4th!

Through the years we all will be together...

Easter Sunday was quiet at our house.  We don't visit family or friends, we don't go out to dinner.  Janey can't be around younger kids much, due to her aggression at times, travel to far flung loved ones is tough, and eating out...well, it's not worth spending a good deal of money to rush a meal, waiting for the meltdown.  So we stay home.  And truthfully, it's okay.  We are loners a bit.  But this year, both Tony and I were feeling a little emotional about our Easter.  It took us until about halfway through the day to realize it was the first year with neither boy home.  Our family felt small.

Janey was in a good mood all day, though.  We had fun early in the day taking a long ride into the city.  We love early Sunday rides, with little traffic.  Boston is a great city, when you take away the traffic nightmares, and we enjoyed driving through some neighbors, like the Little Italy of Boston, the North End, that we don't often see.  We all had some chocolate (Janey's early in the day, to prevent non-sleep!) from huge chocolate eggs that Uncle Pino gave us, and Tony got some of our favorite Gimbel's jelly beans.  It was a fine day, but I was still feeling low.

We aren't very religious, but I certainly wouldn't mind going to church on Easter.  We haven't found a church, though, that we can go to with Janey.  We want church to be a family thing, like it was with our beloved Hyde Park Congregational Church that shut down when Janey was two.  But there is no way on this earth Janey could be at a service, and there is also no way she could attend Sunday School without someone one on one with her.  So, we don't go to church, and that feels a little funny on Easter too.

Looking at Facebook during the day, I of course saw many pictures of kids at Easter gatherings.  I didn't make up an Easter basket for Janey, because she has never had any interest at all in that (or stockings) and because we would end up eating all the candy she didn't want, or she would end up eating chocolate bunnies and not sleeping for a week.  But I decided I wanted to take pictures of Janey for Easter.  I love taking pictures, especially of Janey.  I got out my iPad and used the Hipstamatic app, which has all kinds of virtual lenses and film that it picks at random each time you take a picture.  I adore it.  I took about a hundred pictures of Janey, to see what got picked and how they came out.

While I was in the middle of taking pictures, suddenly and unexpectedly, Janey began to sing.  She often sings a few lines of songs, but it's rare she sings the whole song, although she knows many by heart.  This time, however, she did.  She sang "Have Yourself a Merry Little Christmas", the whole song, in her otherworldly high and perfect singing voice.

I try hard on this blog to portray autism honestly.  Autism isn't a series of miracles, a savant hidden in an unexpected place, a innocent showing us all the way.  But in every child's life, including Janey's, there are a few moments that take the breath of parents away.  Janey's singing yesterday was one of them.  As she sang "Through the years, we all will be together, if the fates allow...", I cried.  And held her close.  She had sung the song, that, if not seasonal, most perfectly captured the mood I had been feeling all day.  For that moment, our troubles were indeed far, far away.

Out of the Blue

We've been on a pretty good run with Janey lately.  She's settled into the school year routine, and has been fairly cheerful for a good long stretch.  It's been nice.  The time change did result in a sleep issue, where Janey wanted to go to bed about 4 in the afternoon and then wake around 1 am for the rest of the night, but that gradually seems to have gotten better.  It's times like this when out of the blue incidents truly can shake us up.

Yesterday here in the US was Veteran's Day, one of the few holidays that don't attach themselves to the weekend, but occur on the same date each year.  So we had the weekend, and then a day of school and work, and then a day off.  That is never a good scene with Janey, but she did fairly well yesterday.  Daddy was home,which is always a plus.  She was very eager to get out of the house, and we went to a few of her favorite places---Whole Foods for some "ham", which is actually a hugely expensive kind of salami she can always find there, and ToysRUs just to walk around and look at toys and find the few toys she already owns and play with them, to the exclusion of the millions of others toys.  So a typical day.  She slept fairly well, and we were looking forward to this morning, getting back in the routine.

All I can think of is that Janey felt today should be a weekend day.  After all, yesterday felt like a Saturday, albeit a strange Saturday after a one day week, so today should be a Sunday.  When it became evident I was trying to dress her for school, she went ballistic.  Every piece of clothing I tried to put on, she violently took off.  She arched her back and screamed at the top of her lungs "DADDY!  DADDY!"  So Daddy came in and tried to dress her, with similar results.  She is strong, and if she doesn't want to be dressed, she doesn't get dressed.  For 10 minutes, we struggled to get her into her clothes.  The screaming was deafening, she flailed out over and over, she was in a fury.  She tried to hit us, she lunged at us, she hit her own head over and over.  Finally, I think she just wore herself out, and we managed to get the clothes on.  Just in time, as I only was able to quickly brush her hair and teeth before the bus arrived a bit early.  I hope very much she stays calm for the day, but who knows?

I took a deep breath after she was on the bus and thought about the whole incident.  I tried to tell myself she's been quite good for weeks now, and that I should not be so bothered by the tantrum.  But I was.  I think it's the out of the blue nature of these fits that makes them so tough.  She goes from calm to absolutely 100% fury and fight in a matter of seconds.  The mind and body have trouble adjusting to that.  And I can imagine how it feels for her to feel that out of control.  The intensity of these episodes are such that I think in most childhoods, they would be something that would happen only once or twice, and be remembered always.  But with Janey, and with many kids like her, they happen often---not on a regular schedule you can prepare for, but suddenly.  It's like if a day was perfectly sunny, and suddenly a tornado touched down and ripped your house apart, and then lifted and was gone, leaving you stunned.

It's sudden explosions like today that make it  hard to ever totally relax as a parent of a child like Janey.  A day can be perfect, but there is always the knowledge it all can very suddenly blow up.  It causes a stress that never completely goes away.  It is a drain on optimism.  It must make life for Janey, even more than for us, feel like a walk in a minefield.

The Mother's Day Card They Don't Make

If you stroll the aisles of your local card shop in search of a Mother's Day card, you will find almost anything you need.  My husband actually gave me a card this year from our cats.  Like that card, many of the cards are made to speak for kids that don't talk, or who aren't likely to pick out a card---which, truth be told, are most kids under the age of 20 or so.  Kids aren't extra known for planning ahead to make Mother's Day special.  That's more the work of husbands or teachers, and I appreciate all the work both those categories do to make sure I get some Mother's Day wishes.  However, the card that I've never found is one to give to the mother in your life that has a child with autism---a very specific card from our specifically special kids.  Here's some of what it would say, if it existed....

"Thank you for all the nights you stayed awake when everything in you wanted to sleep.  I don't know why I sometimes wake in the night, but you are there for me when I do."

"Thank you for changing diapers and pull-ups, and occasionally cleaning up from what happens when they aren't changed quickly enough.  Thank you for understanding that I'll be trained when I'm developmentally ready, not when my age says I should be"

"Thank you for finding your inner tiger to speak up for me when I can't.  Thank you for overcoming your fears and being an advocate for me"

"Thank you for focusing in on me when I am melting down in public, and ignoring the stares around me.  Thank you for finding the strength to keep taking me out"

"Thank you for having the courage to follow your instinct as to what will help me best, and thank you for having the flexibility to change course when what you thought would work isn't"

"Thank you for taking joy in my accomplishments.  Thank you for realizing that a triumph is a triumph, no matter what age it occurs at"

"Thank you for finding a way to communicate with me, however you can.  Thank you for knowing that talking in a conventional way isn't the only right kind of communication"

"Thank you for enduring my tantrums, my meltdowns, my crying, my manic laughter, my rituals.  Thank you for understanding I am doing the best I can"

"Thank you for seeing all the ways I am amazing.  Thank you for secretly thinking, as almost every mother thinks of almost every child, that I am one of of a kind, special in a way that no other child is"

"Thank you, most of all, for loving me---loving me with a love that is fierce and all-consuming and never-ending.  Thank you for being my mother"

And my own voice here---thank you to all the mothers of autistic children everywhere.  You are my sisters.  You are my heroes.  You are my strength.  You are amazing.  Thank you.

Angry At Autism

I want to warn people that I think this blog entry will be a little raw.  It's one of those entries I write more for myself than anyone else, just to vent my feelings.

I am feeling angry today, furious really.  Not angry at any person, or institution, or event.  I'm angry at autism.  I think it's fair to say I hate autism.

In response to the arguments I am making in my own head to that statement---saying I hate autism doesn't mean in any way I hate people with autism, hate Janey.  I love Janey more than I can imagine loving anyone on earth.  And it doesn't mean I don't realize that not everyone with autism has a form of it that would stir up hate.  I wish there were different names for different kinds of autism.  There is autism that makes people a little quirky and interesting, autism that is something a person can and often does feel proud to have.  But if they are able to feel that feeling, they don't have Janey's form of autism at all.

I hate autism for what it has done to my daughter.  It took a sweet little girl, a girl that in most ways was developing normally, a girl that more than one person said to me "Well, at least we know she doesn't have AUTISM!" as if the very thought of that outgoing, happy child having autism was something we could almost laugh about, and within a few months, stripped her of her happiness, her ability to communicate anything but the most basic thoughts, her ability to learn...autism came like a thief and somehow, before my eyes, robbed Janey of so very much.

I hate autism for tormenting my beautiful girl.  I hate it for making her bite herself until she has a permanent scar on her arm, for making her scratch herself so badly she sometimes bleeds, for making her scream a scream of what only can be described as agony, over and over and over, for making her cry sometimes for days for no reason she can tell us, for making her perform useless rituals increasingly frequently, for keeping her from sleeping, for doing things to her that if it were a person doing them, would be rightly called torture.

I hate autism for making learning so hard for Janey, for making it that any testing she has ever had shows her to be severely retarded, although I know, when I allow myself to think about it, that there is an amazing mind locked away somewhere in her brain.  I hate it for keeping her from reading, from doing math, from being able pursue her interests in any depth.  I hate it for taking someone with many gifts and talents and making them unable to use those gifts and talents.

I hate autism for taking away so many of childhood's joys from Janey.  I hate it for taking away any real enjoyment of Christmas, or birthdays, or Halloween.  I hate it for taking away slumber parties and playdates and ballet lessons and first dates.

I hate autism for the what it will do in the future.  I hate it for keeping Janey from ever getting a high school diploma, a college degree, a husband, a family, a first apartment on her own, a life apart from her parents.

I hate autism for making our home life so often a living hell.  Janey doesn't make it that way---autism does.  Autism keeps us from vacations, dinners out, visiting friends as a family.  Autism will take away any years Tony and I might have had of a leisurely retirement.  Autism will make me terrified of getting old, of not being on this earth to protect and care for my precious, precious girl.

Maybe I am not supposed to say I hate autism.  Maybe I am not supposed to be angry at it.  But substitute any other name for autism in this post, and imagine NOT hating it, NOT being angry at it.

I love Janey.  I hate autism because I love my daughter.  Janey's wonderful traits, and she has many, are not part of the autism.  They are what the autism has somehow spared.

Tomorrow we have our big, big IEP meeting.  I will write about that, and I will try to be less emotional than I am today.  But for now, I am allowing myself, until Janey gets home and I put aside any emotion to give her the best night I can, to give in to hatred.  Just for today.

Analyzing My Sadness

As I wrote about recently, we have pretty much come to the decision that Janey needs to change schools to attend a specialized autism program.  It's a hugely tough decision, for us and for her current school, and everyone is working on making sure we are doing the right thing and doing it in the right way.  Everyone is working to do the best for Janey, and yet, still, I am very sad.

I am sad because I love her school.  I love the people there.  It's become a home away from home for me, for the past 14 years.  When I drop off Janey, I talk a little with people I've known for many years.  I care about them, and truly love some of them.  It's a wonderful school.  But---I know that isn't what is the most important.  The most important thing is that Janey be in a place that can best help her be happy and live up to her potential.

This morning, the sadness hit me very hard.  It was "Dress Up in Green" day at her school.  Although they can't come out and say it, it's for Saint Patrick's  Day.  There are many, many Irish families at Janey's school---probably close to half the families, so it's a big day there.  I dressed Janey up for it, and thought about how much I enjoy things like that---special dress-up days, field days, the excitement of a school just before Christmas, the days that are a little out of the ordinary.  And then I thought about how in an autism school, those days will probably not happen.  Kids with autism often don't like changes of routine.  They like predictable days, not special days.  And I thought about how Janey didn't care a bit about dressing in green.  She doesn't know what St. Patrick's Day is.  My sadness was just for myself.

However, when we got to the school, there was a special surprise.  A bagpipe player was playing for the kids as they entered the school.  Janey walked straight over to him and started lightly touching the bagpipe.  The sweet player showed her parts of it, and talked to her so kindly.  Then he played another song, and the smile on her face was one of her incredible, overwhelmingly wonderful smiles.  She held my hand and started to dance.  As we walked down to her room, she was as happy as I've ever seen her.  And I thought---it is not totally just me that I am sad for.  I'm sad that she won't experience the everyday surprises that a "regular" classroom holds.  She won't be around other children that are living a more typical childhood.  She will be with people that care for her, I know, but there is something given up, too, something hard to define but something important.

This sadness---it doesn't mean we are making the wrong decision, I don't think.  But it's very real.  I have often thought how one of the biggest joys of being a parent is reliving the parts of your own childhood that were special.  When we think back on childhood's special moments, we don't normally think "It was so special that my days were predictable.  I have such special memories of regular school days"  We think about the time we got a huge bag of candy for Halloween, the classroom parties, the field days and the shows and the bus rides to meets and the snow days and the graduations.  At least I do.  I want Janey's life to have those moments.  I want her to be surprised by bagpipers.  That is what is making me sad.

Why, why, why, why, why?

That is what I have been asking myself about Janey's crying and screaming, constantly.  There is supposed to be a reason for this kind of extreme sadness and anger, something I should be able to figure out.  But with Janey, the best I can do is guesses.  I reckon to say it's probably the best anyone could do.  Here are some of my guesses...

Guess One--- Janey is bothered by the holiday change of routines.  She is especially bothered by an inconsistent schedule.  She knows, at some level, that we go to school for five days and are home for two, and that on the school days, Daddy goes to work, while he's home on the weekend.  During vacation, that is thrown to pieces---there is no school, and Daddy seems to appear randomly---he took off Christmas week, but then had to go back to work, but then it was New Years' Day, now another work day.  School was supposed to be tomorrow, but it's already been cancelled due to the coming storm.  There is no explaining all that to Janey.  On top of that, William is home, for winter break from college.  I am pretty sure Janey had no real idea where he suddenly disappeared to last September, although we have taken her to see his college and room several times.  And now he's back, but in her eyes, who knows for how long?  I even was gone one night, for my semi-annual night out with friends, not coming home until after midnight, which I am sure in Janey's eyes was another scary disappearance.  Of course, we explain all these things to her as best we can, but her level of understanding is very limited (and visual calendars and aides beyond her).  

Guess Two---  Janey hurts in some way she can't explain to us.  I don't think that is the case, but it's possible.  When the screaming is terrible, sometimes we give her Tylenol in case she has a headache or some other pain she can't explain, but it usually has no effect.  She has no fever, no signs of illness, and when I ask her to "point to the hurty place", which is something she seems to understand, she points to nothing.  She can sometimes stop the crying suddenly for an hour or two, and show no signs of any pain.  She gets sick less than anyone I know---almost never.  I don't think it's pain.

Guess Three---  Bad dreams.  Janey is not sleeping well at all.  She seems to be resisting sleep, and not sleeping deeply at all.  I wonder if she is having bad dreams, which are making her scared to sleep.  I am a vivid dreamer, as are her brothers.  I can't imagine how scary it would be to have a bad dream and not understand it's just a dream.  I've had dreams as young as Janey and younger that still scare me to think about.  I've tried talking to Janey about this, about "videos in your head when you sleep" and asking her if she "saw a scary video in her head" and telling her that was a dream and not real.  But I have no idea how much of that she understands, and if she does, there isn't a whole lot I can do about it.

Guess Four--- Winter.  Janey loves to be outside.  But it's been bitterly cold, and snowing a lot, and she just can't spend the afternoon in the back yard as she does in the summer.  Exercise is very important for her, but like a lot of things for children with special needs, not easy to come back.  We are going to look at special swimming lessons, but even that will only be something like an hour a week at most.  The house closes in on all of us in the winter, and I am sure that affects Janey.

Guess Five--- Frustration with her limitations.  I have no way of knowing how much Janey understands about herself.  I wonder if she is able to think far beyond what she can express, and if she is just plain fed up with that.  She showed recently that she can read at least some, and I do truly feel she has untapped potential.  That would be incredibly frustrating, and maybe she is just showing us that the only way she can figure out how to.

Guess Six--- No Reason.  That is sometimes my leading guess.  I don't know if there is any reason at all for Janey's screaming and crying.  Or I should say, any reason that is controllable.  Her bad spells, and indeed her good spells, seem pretty random sometimes.  They come in, last from two to six weeks or so, and go away.  I don't know enough about what cyclical mood disorders would look like in an autistic child to say for sure, and I am not convinced anyone else does, either.  This is in a lot of ways the scariest possible reason, because it means there isn't a lot we can do.  Maybe there is a change of medication, but I have come to realize medication is a guessing game in a child like Janey---a guessing game with pretty high stakes.  If I felt sure she would be helped by a new or higher dose of medication, I would be very open to it, but that is always sometimes to be taken very seriously.  And there are no guarantees it would help.

And so we are left with guessing, and hoping.  There isn't anything else we can do.  I think sometimes people outside the world of special needs think there is some number you can call when it just all becomes unbearable---that I can say "Okay, this is just too much.  I give in" and I can call that number and all kinds of wonderful help I've been for whatever reason resisting taking advantage of will kick in.  The truth is---that help doesn't exist, not in any coordinated or accessible or affordable way.  So we just keep on keeping on.  We don't have a choice, frankly.  And the love we feel for Janey, for all our Janeys, is every bit as strong as the love anyone has for their children.  That is how we do it, when people ask how we do it.

We simply choose to forget

I've been trying for the last few days in my head to write a year end post that was cheerful, that summed up Janey's progress for the year, that sent out a message of hope and looking forward.  I can't.

The song "Memories" keeps going through my head unbidden, with the line "What's too painful to remember, we simply choose to forget".  That's what I wanted to do with last day of the year post, chose to forget what is painful to remember.  But Janey has been screaming for two days straight, just barely interrupted now and then for a few moments sleep.  I am exhausted, done for.  I have no idea what is wrong, and it's most likely it's just the demons that haunt Janey on a regular basis.  This effect is enhanced by the irregular schedule of the holidays.  Tony was home last week, but he had to go back to work yesterday.  Janey didn't take that well.  He's at work today again.  He'll be home tomorrow for New Years, which almost makes things worse, as she will get used to him home and then---work again.  She is supposed to go back to school on Friday, but they are predicting a big snowstorm, and that probably won't happen.  I feel at the end of my rope, at the end of my resources.

Yesterday I did a brief ride to take Freddy to a friend's house.  Just being out of the house for that little time felt like a treat.  I started thinking about how my world has gotten very small.  I love the few places I can take Janey.  We had a couple very nice evenings at friend's houses over the vacation.  But those are rare.  Mostly, on a regular day, there is no place to go with Janey.  The winter is even worse than the summer, because with the 10 degree weather outside, even when it's not snowing, there isn't the backyard or park option.  I look at Facebook, at friends' kids, going to outdoor events, playing sports and having sleepovers and going to parties and taking road trips, and at times, my jealousy overcomes me.  That's not a kind thing to admit.  I had those days, when the boys were young, but now, my life feels very, very small.  I sometimes fantasize when Janey is screaming the night away about the years long ago when the world was open.  I think for some reason about one night, when I lived in Orono, Maine, after finishing college, while my boyfriend then was in graduate school.  I had written a letter, and I walked to the end of our short street to mail it.  The sun was setting, and I had a sudden moment of elation, thinking how my whole life was in front of me, how I could go anywhere and do anything and be anyone.  I didn't often think like that, even back then, but that moment somehow has stayed fresh.  Now, I see only a very narrow path, a very closed world.  I will care for Janey until I die.  These might be the easiest years, with her in school and afterschool. Even that might be ending soon.  The school might no longer be able to handle her.  They might want to move her, and the one haven I currently have, with a place I know and love, with people I trust to love Janey, might no longer be able to care for her.  I am feeling, frankly, overwhelmed and scared.

And so this isn't a cheerful post.  It's an honest post.  I want very much to go into the "Memories" mode, to tell you all the good of 2013, to delight in my girl.  If I can't do that, I want to go into "good autism mother" mode, and put myself aside and stop my complaining and concentrate 100% on Janey, whether she is screaming or crying or not sleeping or whatever, to not have these selfish feelings of isolation and depression.  And all those failing, I just want to somehow feel hope that it will get better.  That hope isn't strong right now.  Tomorrow, I will try hard to start the year on a better note.  Until then, I'll just close with my most heartfelt thanks to all of you, for listening.

Little Triumphs of Christmas

Christmas has come and gone, and overall, it was a good one.  I was very tense about Christmas this year, as I guess in some ways I always am, but it seemed like more this year.  However, I used a "fake it until you make it" method (a phrase a friend told me that I very much like) and kept plugging away at Christmas stuff, and when the day came, it all seemed to work.

As you can see from the pictures, Janey actually opened two presents, and looked at what was in them.  That was huge for me.  She wasn't that excited, but she did seem to get the process, and was pleased with her nail polish and her plush Sesame Street count---the presents shown here.

You can see she wasn't too into her stocking, but she did take a few things out of it and looked at them briefly!

I think the best part of Christmas with Janey this year was Christmas Eve.  As we almost always do, we went to the house of a family friend.  The picture above is our traditional picture of our kids and the friends' daughter, in front of the tree.  This year, it was going to be a little bit bigger crowd than usual, and we weren't sure how Janey would do.  She did quite well!  She did something she sometimes does when there's a lot of people---she surveyed the crowd and found someone she liked the looks of, and sat on their lap.  In this case, it was the girlfriend of our friends' son, and the girlfriend's mother, people she had never met before.  They were wonderful with her and pleased she picked them, I think!  She did well with the two year old boy that was there, the grandson of the friends, which I had been nervous about---Janey can sometimes be aggressive with younger and smaller children, but she mostly ignored him, although at one point, while we all held our breath, she briefly put her arm around him.  There was one screaming incident there, when Tony had taken her out of the room to calm her down.  Tony and I both realized that how he and I handled that screaming made a different.  We stayed calm and acted like it wasn't a big deal.  I said something like "This screaming isn't uncommon.  It's fairly normal for Janey" and I carried on as if it wasn't happening, and that seemed to relax everyone about it.  We've realized, over time, that how we as parents react to things Janey does sets the tone.

The Christmas Eve night and Christmas day made me realize that Janey is making progress.  It's slow, but it's there.  In little, small ways, she is becoming more mature, and we are becoming better at being her parents.  Some days it doesn't feel that way at all, and if you were watching us from outside, you might not see it.  But we are learning all the time, and so is she.  As we look to the New Year, we feel hope---hope mixed of course with fear, with some sadness, with challenges and with acceptance of the life we have been given, but with hope nonetheless.

Our school goals for Janey

Lately, for various reasons, I've been thinking a great deal about what my goals are for Janey's schooling.  In thinking about them, some are much like everyone's goals for their children, and some are quite different.  It's been an interesting thought process working them out.  I thought I'd post them here, and see if anyone has any thoughts or ideas about them.  If you do, I'd love to hear them!

Our goals for Janey

1. We want Janey to be happy, as much as is possible.
2. We want Janey to be safe, physically and emotionally.
3. We want Janey to learn to the extent she is able to learn
4. We want Janey to be around people who love her and understand her.
5. We want Janey to be part of a community of all different people, not just those with autism. We want her to be around typical kids and adults as well as others with disabilities.
6. We want Janey to be exposed to as much music and dance as possible, for we feel those are her strongest areas.
7. We want Janey to have consistency in her life---to be at a school that she will be able to continue at for many years. We want to minimize transitions in her life.
8. We want others to get to know Janey, in order to enrich her life and theirs. We want to give other children a realistic and true view of autism.
9. We want Janey to be able to experience as many of the normal parts of childhood as she can---holiday celebrations, school programs, classroom jokes and drama and community, playground time, all the parts of public school that we look back on as adults fondly.
10. We want Janey to know she is valued for just who she is.

Trick or Treat or Not?

Halloween was my favorite day of the year growing up.  It seemed just plain magical.  You dressed up, went to people's houses, knocked on the door and they gave you candy.  What holiday in the world could be better than that?  Since we lived in the country, people got around to trick or treat by having parents drive them.  I used to think that the only thing in the world that could make Halloween better is to live in a place with LOTS of houses close by, so you could by walking get to TONS of houses and get tons of candy.  Bringing up my boys in a suburb-like part of Boston, that came true.  I loved every Halloween when they were little enough to go out----here's a picture of them looking extra scary one year!

However, with Janey, it was never as straightforward.  She went out with the boys once she was old enough, and I think I can remember her enjoying it when she was 2---excitedly saying "Treat or treat!" to people but not getting the candy part, which was cute.  But then she regressed, and although we still took her out with the boys for a few years, she was not really interested.  She often wound up in the stroller just observing.  Once the boys were big enough to go out with friends instead of us, I would try taking her to a few houses, and usually, she would pretty quickly balk and cry.  Last year, I took her to just one house, and she was not at all happy with that.  And so, this year, I'm not going to try.

I have to admit that it's hard for me to give up on Halloween with her.  It's hard to admit that she really has no idea what it's all about, that she doesn't enjoy it, that trying to get her to participate is much more for me than her.  She doesn't like to dress up, she is scared walking around in the dark, she isn't hugely motivated by candy unless it's just the kind she wants, and she hasn't got the ability to anticipate the fun, which I think is what makes holidays the most exciting as a child.  I remember counting down the days till Halloween every day of October, and when the day actually arrived, it would just seem incredible that it was there.  I'd daydream and daydream about the candy, about trading with my sister, about the way that bag full of treats smelled.  Janey isn't able to do that, I don't think.  She isn't going to feel left out not going out.  So why is it so hard for me?

I think as parents, we feel somehow like we should be completely altruistic.  We like to think we do things like helping Santa or buying birthday presents or making up Easter baskets to make our kids happy.  And we are right, but we also do it because it's fun, because it's a way to step outside everyday life, because we want to relive our childhood a little.  I don't think we are wrong to do things for our own joy some.  Not at all wrong.  That is part of what makes parenting a child with autism a challenge.  Some of the built-in joys of parenting aren't automatically there.  There are other joys, to be sure.  There are alternate joys, and they are real and wonderful.  But I will admit---I wish tonight I was dressing up Janey in a costume.  I wish she had woken up thrilled that the day was finally here.  I wish she was going to be fighting to keep on going to another street, even when she could barely hold all her candy.  I wish we were going to be negotiating over how much she could eat before bed.  I wish all that, and I will admit it.  I wish it for me, selfishly.  I wish it for Janey, as it's a joy she won't get to have.  I am struggling now to think of a way to close that is upbeat, and at the same time saying to myself "Get over it!  It's a minor issue in the larger scheme of things!"  So I'll let that voice of reason close for me.  Happy Halloween.

Hope and Holiday Blues

First the hope.  Yesterday, we visited a respite house a few towns over.  Janey's first grade teacher had told us about it, and I did an online application and got an email inviting us to visit.  It was wonderful.  The house is on a college campus, and is all set up for being a place for children and adults with disabilities to spend time and have fun.  There is a great rec area, a fantastic kitchen and a floor full of dream bedrooms, for overnights they sometimes have, and a lot more.  And best of all, they actually have openings!  Janey started the tour by freaking out of her mind, screaming hysterically.  So they got to see that.  She calmed down quite quickly once she saw some of the great things they had there, and tried every bed in every bedroom and by the end was hugging the woman who works there who gave us the tour.  We signed her up for two Saturdays this month.  One will be a trip to the Children's Museum, and another to a local beach.  We are holding our breaths---it almost seems too good to be true.  It's exactly what I had wanted, and even wrote about, and it actually exists!  There are scholarships available, but if we can't get one, with a little belt tightening we can manage---it's not crazily priced.  There are 6 overnights a year for girls, and we might even try one of those next month, and there are vacation week camps!  I keep thinking something will go wrong, or Janey will be too much for them to handle, or SOMETHING---it really feels like a dream.  I'll write more about it after the 12th, when Janey goes for the first time.

The holiday blues---that was today.  It's the 4th.  Tony and I felt a little down all day, and talked about it tonight.  Lots of reasons, but a big one is the isolation that having a child with a disability brings, especially on holidays.  Gradually, we have stopped going almost anywhere.  When we used to go sometimes to cookouts or the like with family and friends, it was almost always a disaster.  Janey would get hysterical, and we couldn't stay long.  Most all of our friends and family now also have littler kids around---grandchildren or kids of their own.  We can never be sure how Janey will act, and I think there is fear on both sides about that.  We don't reach out to go places, and we don't get invited, probably because people know we wouldn't go anyway.  Even if somehow Janey acts perfectly, we are still on edge.  We can't ever relax.  Someone has to be following Janey at all times, within an arm's reach, especially at other people's houses or public places. And so we stay here.  And usually, we are okay with that.  We aren't hugely social people.  But on holidays, sometimes it feels a little sad.

We were planning a family trip to a beach tomorrow, but talking about it tonight, we decided to make it just Tony and the boys.  The beach is quite a drive, and once there, it's not like we can all have fun as a family.  I want the boys to have relaxed, fun, happy times with their father (and with me) and if that means us not all being together, it's better than just skipping the outings.

The two themes tie together there.  If the respite works out, and Janey can have fun, and be a place where there is paid staff and volunteers that are there just to take care of her and the other kids, then we can have some time with just the boys.  We can relax a little, but it's bittersweet.  It's not a full family without Janey.  I had a moment just before going into the respite house of an overwhelming feeling of sadness.  I was so happy to be getting a chance to see about the respite we've craved, but it felt sort of...I don't know the word. They start taking kids at 8, and I guess that's because that's an age where you know it's not something the child is going to grow out of.  This is our life, this is Janey's life.  We are at a point where we need more help than just home and school can provide.  And in a way, that breaks my heart, although I am so happy there are wonderful people who will be able to give us that help, and give Janey a great time at the same time.  But it's not normal family life.  Or maybe it is---"regular" kids go to activities and sleepovers.  Janey will be able to also---just with a little more support.  Maybe I think too much about things.  Maybe I am overthinking this.

Either way, Happy 4th of July to all my USA readers, and happy start of summer to everyone!

Halloween

This morning, Freddy told me this is the first year Halloween means nothing to him.  He's a sophomore now, and probably beyond the trick or treating age, or the dressing up age (although some kinds at his school still do, but it's mostly a 7th and 8th grade thing).  As he was commenting on that, his older brother William said "Today is Halloween?" That brought it home.  That age has passed for them.  And that made me think about Janey, of course, who has no idea today is Halloween.  Do I dress her up, although she doesn't much like being dressed up?  Do I take her trick-or-treating, although that has scared her the past few years when I tried it?  Do I give her candy, although chocolate past noon makes her stay up all night long?

A great new blog about a family starting their journey with autism talked about this issue---give it a read here.  It's a tough decision.  It addresses one of the issues that isn't unique to families with autistic kids---how much of what we do with kids is driven by our own needs to recreate parts of our childhood we loved, or to try to fix parts of our childhood that were imperfect?  It's impossible, I think, not to do that at all, but in the case of autism, it's more problematic.  Dressing Janey up or taking her out in the dark to go to people's houses decorated with scary spiders and skeletons puts her in a situation she doesn't understand at all, and one that might totally terrify and confuse her.  Thinking of it that way, it seems like a no-brainer.  But there's that part of me that says "But Halloween is such a special time!  I want Janey to be a part of it!"  Which in her case, of course, means I want to be a part of it, because she won't be, not in a meaningful way.  I want to recreate that feeling from childhood of how it was to have one night where all the rules were suspended---where you could go to random houses, ring their doorbells and get candy.  I remember counting the days, and when I woke on Halloween morning, feeling truthfully more excited than Christmas morning.  I remember my fantasies of someday living in a suburb or city, where I could get to a lot more houses than you could in my rural town, where you had to be driven to trick-or-treat.  And I did live that dream, with the boys, for a few years, before they were old enough to go out on their own.

Autism changes a lot of things in a family.  In the scheme of things, missing out on recreating childhood memories is a very small, selfish thing to be thinking about.  But I do.

Christmas week

I had a tough time with Christmas this year. I'm not sure why. I never really got in the spirit---I would have been just as glad if it had somehow just not happened. I did all right in the end---I got the boys presents they liked, I put up a nice tree, we all had good food and a good day, but I did the bare minimum. No presents outside the family really, no cards, nothing major. I think Christmas depresses me more each year as somehow it really hurts that Janey doesn't understand it. That's my problem, not hers---she's perfectly happy not understanding it. She doesn't ask for toys, or wait up for Santa, or count the days. She knows carols and songs, and that's Christmas for her. I guess that's what we are all supposed to want---a child without greediness---and I have that. But I dream a little of her asking for a special toy, or being excited Christmas morning. As it was, she was completely uninterested in the toys I carefully picked out. She didn't even want to look at them---they were too new. She found an old Barbie and carried it around all day. Today she looked at the box of toys a bit more, and it was interesting watching her. She looked at one at a time, very carefully turning it to all angles to look at, and touching every part of it. Not playing with them, but I guess getting used to them.

This week is tough, though, after a mostly very good fall. Not having school is very hard on Janey---she very much needs that routine. She has fallen into her "wake up crying" routine instead, which is so so so so so hard. Once she gets crying, it's next to impossible to calm her down. She cries out requests---"I want Kipper! I want Oreos! I want milk! I want snuggle on Mama's bed!" and I try to help her, but she doesn't really want any of those, she just wants to feel better, and I can't do that. We got a lot of snow a few days ago, and we are essentially stuck in the house---the boys don't want to go anyplace, and I can't take Janey out in public on my own anymore much---it's just too scary, with her bolting ways and her sudden tantrums.

Janey's 3 year re-eval IEP meeting was wonderful. What a great bunch of people work with her. I was in tears of happiness after the meeting. I truly feel they all care about Janey, and want the very best for her. She is making some progress---painfully slow, as Janey's progress always is, but some. I felt like the woman who does ABA with her now REALLY gets her---she said Janey's vocabulary is very good, but it's actually getting the words out that is the problem, and I am glad she understands that, and is going to work on that. If you can catch Janey in the right mood and just ask her to name objects, she's a whiz. She can't tell you what they do, or show you how to use them, or use their names in a sentence, but she can sure name them.

I think what I need to deal with soon is my own depression. I don't like to admit it to myself, but I don't think I face each day lately with much vim. I dread each day, really. I am becoming more housebound, partly due to lack of money, because most anything I can think of that gets me out costs money, and partly because I'm so damn exhausted from doing all I can for Janey and the boys that I just collapse in my free time, or play Scrabble on Facebook, or read. I am not sure what I can do about the depression. I feel like it's reasonable depression---it's not out of no-place, and no therapist is going to be able to fix things---to give me money or to help with Janey. On the contrary, they will cost money. I feel like I do okay day by day, but when I stop and think about things, I fall apart.

I will include a picture here of Janey by the tree.

Two weeks until six

Janey will be six two weeks from today. Birthdays always bring up a nest of feelings. Every year, I think to myself "Maybe next year she'll know what a birthday is, look forward to it, get excited about it". I think this year I'll stop thinking that. I get with her like people get about getting older---I don't want her to get to be older, because that's just putting her further from where she "should" be mentally. That's a bad thought, but a truthful one.

Presents are another nest of bees. She already got one present, from the very wonderful lady who has volunteered to work with her this summer. It was so nice---a fairy wand that is perfect for her, and wooden bears you can change the expressions of. And of course Janey had the typical gift reaction---freaking out, screaming, throwing it around. And the woman was hurt, despite trying not to be. And I was mortified. And of course within an hour, the fairy wand was her favorite thing ever---she's loved it right to death already. But presents are tough---they aren't expected, they require a reaction she doesn't understand, they are nightmares for her in some ways. As would be a typical birthday party. And that's fine---for her. For me, it's harder. I still hold onto the dream of giving her a little girl party, with some special presents that she will be thrilled about. I dream of getting the American Girl catalog and going through it with her page by page, talking about what we would order if we could, and maybe picking out a few special thing to get, and some Christmas blowing all my money and buying her a doll and furniture and it being something she remembers always....and it's never going to happen. And I need to get over that.

I ordered her presents from a web site I should give a shout-out to, for other parents of autistic kids. It's officeplayground.com They are aimed at little toys for use in offices, but they realize a lot of the same toys work for autistic people. They have all kinds of "fidget" toys, things you can play around with using your hands, like stress balls, Tangles, those toys with water inside that looks like waves, etc. Their prices were good and I ordered her about 10 little toys. I hope she likes them. It felt like a realization. I didn't try to get her typical 6 year old toys, because that's what I wanted to get. I tried to get her something she'd love. I need to do that with as many aspects of her life as I can. She fights such an uphill battle just fitting into this world; I don't need to add to it.

Her birthday is also Freddy's birthday---he will be 13. Maybe that all was arranged somehow---that I'd have another birthday the same day. Who knows? Freddy wishes he had his own day! He's ready to be a teenager---he's been one for a while. It makes both their birthdays very special to me. I'm so lucky to have them both, and their brother William.


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