Struggling a bit

The last three or four days have been tough ones for Janey, and for me.  She's been crying a great deal, more than in ages.  We had decided to take her to the doctor today if she wasn't better, not because she seems sick but just because it's so hard for her to tell us if she is sick or if something hurts, but today is a big improvement, so we are waiting on the doctor (doctor's visits being hellish when she's not happy).

We really don't know what's up with Janey.  Our best guess is boredom.  Summer school is over and regular school doesn't start until September 9th.  Janey doesn't like there not to be school.  She enjoyed summer school a lot, from all indications.  She likes activity and movement and going places and doing things.  Tony is doing his level best to take her for a lot of car rides, which is what she asks for day and night between tears, but the second we are home from one car ride, she starts crying for another one.  The car has over 100,000 miles and is showing signs of starting to be unreliable, using a lot of oil, but besides that, constantly being on a car ride is just not a realistic way to live.     (Picture is Janey on a better mood day)

Even before this recent crying time started, I was feeling pretty depressed, more so than in probably years.  Like Janey's crying, I'm not sure why.  Nothing in particular had changed. I think some of it, also like Janey, was feeling let down after a great time.  I went for almost a week to see my sister-in-autism-parenting, Michelle, and her family.  It was a great trip, even with a 17 hour train ride out and another back (I don't fly!).  I relaxed so much!  It was great being with Michelle and her family---partly because I think only another autism family totally gets the life, and partly because of how much I love Michelle and all of her family, how much fun they are to be with.  Coming home was hard.  Not that I don't love my family more than anything, but returning to regular life after a really great break isn't easy.

Janey turned 17 last week.  It was a good birthday, one of the first times I felt like she kind of got the birthday thing.  She readily said she was 17 when asked, she requested it be cake time and blew out her candles with glee, she loved us singing to her---it was a very nice day.  Her birthday, as most of you know, is extra special because it's also her brother Freddy's birthday.  He turned 24.

Even with the birthday being a good day, birthdays are another thing that sometimes hits me hard.  As Michelle and I talked a lot about, once your child is pretty much no longer a child but an adult, it's time to accept certain things just are the way they are.  I am working to accept Janey will never be fully toilet trained.  She will never talk in a way that is truly communicative.  She will never learn to read.  She will never be able to be unsupervised.  She will remain much as she is---functioning at a toddler to preschool level for life.  May the future prove me wrong about any of this---I'd love to be wrong.  But I am not wrong. 

I try very hard not to let myself get depressed or in a self-pity spiral.  This isn't out of some feeling that I have to deny my feelings, or some Pollyannaish delusion.  It's for a couple other reasons.  One is that knowing myself, I do better if distracted.  Letting myself go to dark places feeds on itself.  If I make myself stay busy and chipper and active, I feel better.  The other reason is that if I give in to depression, stay in bed all day, feel unable to do things, there's still Janey.  Someone still needs to care for her.  And Tony and I are the only ones that are available for the job, so any time I don't feel up to it, it's Tony's job. My mood and depression affects others, by putting an undue burden on Tony and leaving Janey with just one caregiver.  The conventional wisdom which says all that stuff about having to care for yourself first, having to put on your oxygen mask before your child's---well, that ignores reality.  Lots of things sound great in theory, but theory doesn't do much when faced with a screaming, crying daughter.

And so---what do we do?  We do what all of you do.  We get by.  We wait eagerly for school to start.  We take Janey for as many rides as we can.  We comfort her as best as we are able.  We trade off sleep, we trade off eating, we trade off moments to recover.  

I can't give in to depression, but I can admit to it.  It's a tough life.  It's tough for Janey, and it's tough for us.  Love to all of you out there living a similar life.

 

Freddy's college graduation, and why I'm not there

Today, my younger son Freddy graduates from Skidmore College with a degree in computer science.  It hasn't been the easiest road for him, and I am incredibly proud of him.  And I am also very, very frustrated, because I can't be with him.

Most days, I keep a positive attitude.  It's important to me to do so.  Janey means the world to me.  I love her more than I can possibly express. She has brought us so much joy.  That being said, there are times when the whole autism parenting life is so tough that I am overwhelmed completely.  Today is one of those days.

There is no-one who can care for Janey today, to make it possible for Tony, William and me together to be at Freddy's graduation and celebrate his success.  There is no respite---not on regular days and not on special days. There are several people who would have loved to be able to watch Janey, but that just were not up to the task, and honestly told me so.  I appreciate that.  The last thing I would ever want is someone caring for Janey that would be overwhelmed by doing so.  There are other people who would have been able to care for her but that live far away---I'm thinking of many of you!  But in reality, there is just not any respite.  Even today.

We thought about taking Janey and all going.  But a quick think-through of that killed that notion.  Janey would last about 5 minutes at most at the graduation. Then, one of us would have to take her outside, walk around with her. This would keep her happy maybe for 10 more minutes.  Then, she'd be upset, screaming.  The person watching her would, to say the very least, not be having a good time.  The family inside at graduation would not be able to concentrate and honor Freddy.  They would be thinking about how it was going with Janey.  Or, we could have gotten a hotel room for a few nights, to have a place to stay with Janey.  If that hadn't been extremely expensive (it's racing season in Saratoga Springs, and even a very cheap hotel, especially on graduation weekend, is insanely high priced), it still would have resulted in a long period of time in a room trying to keep Janey happy, and not seeing the graduation.  If one of us wasn't going to see the graduation anyway, it might as well be at home, with the resources we have here.  Tony missed Freddy's high school graduation.  At that time, Janey was in the hospital recovering with many complications from her burst appendix.  So---it was his turn to get to go to the graduation.

And I'm here, at home.  And Janey isn't happy.  She wants to go for a car ride.  I have taken her outside repeatedly to see there simply isn't a car here to ride in.  That doesn't matter.  If she wants a ride, there should be a car.  She is miserable.  There is no explaining to her that it's Freddy's day.  That is not something she understands.  She repeatedly says to me "Put on shoes!"  "Get jacket!"  "Get pocketbook!".  She tries in vain to get me to see that she needs her car ride.  And I am tired.

I've been sick for the last week.  It's a very slow recovery.  But like the car, that doesn't make a difference.  Janey doesn't get I'm sick.  I am exhausted.  And realizing, for the millionth time, how lucky it is that Tony is retired now.  We are broke, and we probably always will be from now on, but there really wasn't a choice.  Neither of us were going to last with him still working.  The years of little sleep and little down time added up.  It's incredible, still, that the two of us at times can sit down and watch a TV show alone, while Janey is at school or asleep.  And if this is life from now on, so be it.  But on days like this, it is hard to not reflect on the toll autism parenting has taken on our lives.  NOT that Janey has taken.  That autism in her particular form has taken.

I don't have solutions.  In thinking about writing this post, I wanted to close with ideas for making things better and easier for Janey and for all of us.  But I don't know how.  It would take an overhauling of our whole society, and at this point in time, that's beyond a pipe dream.

So, I asked myself, why write about this at all?  Why upset those who rightfully might feel that I should not explore the negative side, the negative feelings that this day has brought to me?

And I answered myself---well, why do I read memoirs?  Why do I avidly read about other lives?  For one of two reasons.  I read to hear about a life unlike my own, to better understand what it would be like to be someone else---someone affected by war, or by blindness, someone who grew up in a very different culture or family, someone living a life I'm not living.  I write to share our lives with others.  The second reason I read memoirs is to read about people living a life LIKE my own, to feel less alone.  That is the second reason I write here---because I know I'm not the only one living this life, and I want to be honest about my life to let them know they are not the only one.

All my love today to Freddy, my graduate.  I know you understand why I'm not there, but I hope you also know how much I wish I could be, and how much I love you, and William, and Janey.  Always.

Frederick David Amara, my dear son

None of the above

I used to be a big fan of women's magazine quizzes.  You know the type.  They give a scenario like "Your doctor has told you that you need to lose weight.  You..."  A.  Don't even bother to try, because losing weight is impossible  B.  Go on a starvation diet until you have lost the amount he wants  C.  Start eating a healthy diet full of fruits, vegetables and whole grains.   You all know what the right answer is supposed to be, and picking it can give you a good feeling, a feeling of superiority to those people who might pick A or B.

In real life, it isn't always quite as clear.  I kept thinking about that yesterday.  Let me pose the question to you all...

It's the third snow day in a row.  Your twelve year old daughter with low functioning autism is very unhappy.  She has spent much of the day screaming.  She didn't sleep well the night before, and you finally get her to lie down with you on her bed for a possible nap.  As soon as you are lying down, however, she said "Do you want cheese?", which means she wants you to get up and get her cheese from the refrigerator.  You are bone tired, and she is perfectly capable of getting the cheese herself, and you say to her "If you want cheese, you go get it and bring it to me"  She reacts by screaming loudly and kicking you.  You...

A.  Start screaming back at her, telling her you are just about at the end of your rope, and that she needs to stop acting that way, and you are so tired of it all, and....so on.

B.  Overcome your aches and tiredness and get up and go get the cheese, knowing that might be the quickest way to get past this whole bit.

C.  Tell her calmly she can't kick you, and that you are going to walk away to let her cool down, and that when she does, you'll talk about the cheese.

You probably know what the answer is supposed to be.  However, A and B are pretty darn tempting, in the moment, and I may or may not have picked one of those choices yesterday when confronted with this very scenario.  However, I eventually accessed my inner magazine quiz self, and picked C, the "right" answer.  Janey's response?  As soon as I'd gone into the next room to let her cool off, she found a bag of chips, opened it and threw chips all over her bed, crushing the chips as she did so, so the bed was covered with chip crumbs.  I stood my ground and stayed away, figuring that chips can be cleaned up.  So she upped her game.  She ran to the TV and started pounding it with her fists, something she knew I couldn't ignore.

So...what next?  What't the right answer there?  Before you decide, keep in mind that Janey is as tall as I am now, and as strong.  It's not easy for me to physically stop her from doing things like the TV pounding.

The answer is that there isn't a right answer.  It's a "none of the above" type situation.  As happens fairly often in this life we are leading with Janey, we pick the least harmful wrong answer.  What I did was tell her to stop hitting the TV and I'd get the cheese, which I did, and which she ate a bite or two of before resuming her screaming.

I woke during the night last night, my mind racing.  I kept thinking "I'm not equal to this task.  I don't know how to keep going.  This is just impossible"  I finally woke Tony and we talked, and I calmed down, and woke up this morning ready to keep on trying.  I know in my heart I'm doing the best I can, that there really isn't any correct answers for some of the challenges we face as a family.  But boy, could we use some respite, some help, some something. Until then, we'll keep going, because that is always the default answer---just keep going, because there is really no other choice.

Mining for Positives

After I wrote that title, I pictured Minecraft, a game Freddy used to be into, and how you can mine and find gems.  I pictured a gem called Positive, a sparkly and bright one, that is very hard to find, so you have to look hard for it, but it's also very useful to find.  That is how it's been looking for positives with Janey the past few days.

We were so hopeful a few weeks ago.  Janey was off all medication, and we really saw no change from when she was on it.  She was smiling a lot, and recovering slowly from her surgery and hospitalization.  But starting about a week ago, things went quite strongly downhill.  

The screaming has been the toughest thing.  Janey has always screamed off and on, but lately, it's a different kind of setup.  Things will seem calm for a few minutes, then she will ask for something she wants.  If I can't give it to her that very instant, she screams---a loud, piercing, hysterical scream.  Then she bites her arm, badly.  Then, sometimes, she tries to hit me, or anyone else who is around.  

In looking for positives, I must say these episodes are pretty quick.  They are super intense, but fast.  They start too quickly for me to start giving positive reinforcement for not getting upset---sometimes she starts screaming as soon as she asks the question, if she knows the answer is no.  And if the fits go on very long, it's been working lately to say "Can you try to calm down?" and just waiting.  She does try, and she does calm down.  For a few minutes.  Until the next fit.

The screaming has essentially trapped us in the house.  We can't take Janey anyplace at all.  Tonight, Tony tried taking her to the grocery store, someplace he's taken her for many years.  It was always a positive routine for the two of them.  However, after they had picked out just a few items, Janey did her extreme screaming and arm biting.  They had to leave.  If you are thinking "Oh, lots of kids have tantrums in stores.  You just have to wait them out!" then you have never seen Janey's screams.  They are the screams of nightmares, and the arm biting is an added touch of horror.  Every single eye in anyplace we are turns to us, and if we stay, it will only happen again a few minutes later.  

Yesterday was one of the longest days I've ever had.  Tony and both boys were at work.  Janey was not happy.  I would say she had a screaming episode about every 10 minutes, all day long.  I tried everything.  I tried reading to her, coloring with her, singing to her, giving her a shower, playing toys with her, sitting with her watching TV, cuddling her, listening to music with her---nothing pleased her.  She wanted to "Go to Maryellen's house!"  She loves Maryellen, but if we actually go there, she is happy for about 5 minutes.  And then, when we leave, on the way home, she again says "Go to Maryellen's house!"  It's just something to ask for.  It's not really what she wants.

Janey hasn't been to school for a long time, since late May.  That's probably one of her longest stretches in years without school.  Summer school starts Monday.  I am hopeful it will help, but not confident, really.

We started the medication again today.  We didn't want to, but the intensity of Janey's unhappiness told us that what we wanted wasn't really the issue here.

It is getting harder and harder lately.  I have to admit it.  I sometimes truly feel scared, and I know I feel depressed.  I do see a therapist, but I haven't been able to go since Janey got sick---there is no-one to watch her.  However, although I certainly like having someone to talk to, it isn't going to change the situation any.  I am more and more aware there is not any help but school.  It doesn't exist, not for kids like Janey.  

I will mine for positive at the end here.  I cut Janey's hair out of desperation the other day, because after the long hospital stay it was quite tangled and she wasn't happy with brushing.  I think it came out not badly for a completely non-professional haircut.  Now a quick brush is all she needs.  It's little tiny things like that that are all we can really do to make our lives easier.  So here's a picture of Janey's new 'do!

Allowing ourselves to feel sad

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

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

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

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

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

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

The days it all catches up to me

Once in a while, I have a day like today.  Today, I just couldn't get anything done while Janey was at school.  I napped.  I watched a little TV.  I sat mindlessly at the computer.  I made myself do the things I had to do.  I got Janey ready for school and took her there.  I mailed some packages.  I folded some laundry.  But beyond that, I felt like I was dragging around a huge weight.

I imagine this is depression, in a way.  Janey is having a medium-tough time lately.  She's been doing some things like scratching herself and biting the place on her arm she likes to bite, and she's been doing a lot of screaming.  She has been sleeping somewhat irregularly---not as bad as it's been, but not good.  She is not talking much, and when she does, she's running the words together, so it's hard to understand her.  She has not gotten over Kipper being taken off Netflix, although we found it on Amazon, but she can't quite access that on her own.  I haven't seen a lot of smiling lately.  I haven't seen my happy Janey in a bit.  And it all wears me down.

I tell myself, and I know in my heart, that most any mother would have days like this when dealing with a child with serious disabilities.  But when the weight comes over me, I don't think completely straight.  I don't tell myself to just let it all go for a day, to give myself a day to just feel it.  I feel angry at myself that I can't get things done.  I feel like a failure for my lack of energy.

I say this all not to just be a downer, but to talk to others out there that I know, from the years I've been writing here, feel the same way at times.  I am going to try to give myself permission to sometimes feel overwhelmed.  I'm going to try hard to accept that some days are going to be given over to feeling what I honestly feel---overwhelmed, discouraged, scared, tired.  The internet isn't always a welcoming place to such feelings.  So many blogs, advice pages, news articles---they are full of solutions, of ideas, of forward motion, of encouragement.  And that is great.  There are days I need that.  But some days, I think I need to accept that being Janey's mother is a very tough gig.  And if you are reading this and you are also struggling with negative feelings---let's make a pact to just let ourselves feel them, once in a while.

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.

Christmas Blues

I know I'm not alone in having a hard time with Christmas.  Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds.  But I'd dare to say it's harder for parents raising autistic kids than it is for most.  I've been feeling it a lot this year---a very lot.  I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way.  I've been trying to figure it out---why especially Christmas?  I think it boils down to the isolation autism brings.

"Christmas is for children".  That's a phrase you hear a lot, and something I believe.  Once you are an adult, your main role is giving a great Christmas to your kids.  But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas?  That is Janey.  I am quite sure I could skip the whole bit and she wouldn't care.  I could not have a single present for her under the tree, and she wouldn't even notice.  I could not have her hang a stocking for Santa, and it wouldn't bother her a bit.  It makes it all feel a little meaningless.  I will still have presents for her and a stocking, of course, but who am I doing it for?  I guess it's for me.  In a way, she might be happier if I DIDN'T give her a present or have Santa come.  She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then.  And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for?  (especially if you aren't very religious, and I am not)

All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes.  It's yet another part of life that autism steals from both Janey and me.  Writing this, I feel sort of petty.  I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot.  So why is it so hard now?  I can't really explain.  Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst.  Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is.   Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life.   But a big part of it is sadness for Janey.  I am sad she can't anticipate Christmas.  I am sad that presents scare and not delight.  I am sad she will almost certainly never have children of her own to give a Christmas to.  I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine.  I am sad for all that Janey will never feel or experience.

It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas.  I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey.  I hope you all have found a way, and that you find joy and peace this year and always.

The week I won't forget

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

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

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

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

Trapped

Readers of this blog have told me that they like it that I am honest.  I do always try to be honest, but I also try to not be constantly downbeat.  I've been wanting to write today, but resisting, as I feel like I've been too negative lately.  I tried hard to wait until I felt more positive to write, or to filter out the negative and write only about the positive---how Janey went to the respite house for 6 hours on Saturday and seemed to do fairly well, how there was slightly less crying this weekend, how today she got a good report from summertime school.  However, I'm going tonight to one of my reasons I wrote about recently for blogging---to be a sort of diary, to use when I am needing to write it all out.  So here goes---

I'm feeling incredibly trapped lately.  Not trapped in the way that I want out of my life, or marriage, or any of that.  Trapped literally in the house.  This trapped feeling comes from how incredibly hard it is to take Janey anyplace, at least on my own, and how her needs keep me from getting away for any significant time.  I am feeling like the walls are closing in, and a lot of factors are working together to make it near impossible to kick that feeling.

Part of it is it being summer.  I grew up in Maine, where summer is the glory of the year.  I even then wasn't a summer person, but I spent nearly all my time outside.  I walked in the woods, swam in the ocean, read in a cluster of tall grass, went on little trips to the beach or to get ice cream (which living on a peninsula meant usually a drive to Rockland, a good half hour to get there), walked to the candy store 3 miles away---I was on the go.  That is the kind of summer I wish my kids could have.  My boys do, in the urban way.  They are very good at using public transit, and they can get wherever they want by bus and train and subway, and they do.  But Janey?  Taking her anyplace is so tough.  Today after school, I wanted so much not to just go home.  But Janey has been in screaming mode, and thinking of a place to take her was an impossible task.  Sometimes she will tolerate the grocery store, but we didn't really need groceries, and quite frankly, that wasn't what I had in mind.  I considered a park or playground.  Playgrounds just don't work, as Janey is now considerably bigger than playground age, and with her noises and lack of ability to socialize, it turns into a starefest, and Janey doesn't enjoy herself anyway---not worth it.  Boston has a lot of nice parks.  The problem there is dogs.  A nice park attracts dog walkers, and Janey is terrified of dogs.  Quite a few times, I've tried a great park near us, and wound up just dealing with a screaming Janey or a paralyzed with fear Janey.  Most of the dog owners are nice enough, but many of them also ignore the leash laws and let their dogs runs free, and if a dog runs up to Janey, despite how many times the owner might tell us that Sparky wouldn't hurt a flea---Janey doesn't understand that.  Restaurants on my own with Janey---ha.  We don't do restaurants.  Stores---almost never good. And so we came home and for the hundredth time, went into the back yard.  Where Janey does fine for a bit, sometimes half an hour, but then she screams, or decides she wants her clothes off, and that is over.

Part of it is also the social isolation that autism brings.  When the boys were little, I often got together with friends and their kids.  The kids would play, the friend and I would talk.  It was great.  But Janey has no friends like that.  And I feel like I've gone from having friends that I could spend time with to having friends that I rarely see, because both the friends and I understand that a visit with Janey involved is not a visit.  It's a shared child care time.  Janey will destroy their house, find anything non-childproofed, scream, wet on their floor, grab food---I wouldn't have me over either.  I talk to friends on the phone, but the long leisurely get-togethers---they never happen.  I miss them.

And part of it, I need to admit, is me.  I don't feel up to the challenge of taking Janey places.  I am tired all the time, from her not sleeping.  I can't run fast enough to catch her if she got away.  I have a very hard time with the stares, and the stares always happen.  It is easier, at least physically, to mostly stay home.  But mentally, it takes a toll.

This afternoon, I felt I just couldn't stay home another minute.  I begged Freddy, who wasn't working, to go with us someplace, any place.  Freddy wanted to shop for shoes.  So off we went.  As soon as we got in the store, Janey started crying and screaming.  I tried hard to ignore it.  I walked her around, had her look at mirrors, talked to her.  But the screaming got louder and louder, and it was impossible for us to shop, to say nothing of anyone else in there.  We left within 5 minutes.  In the car, I opened up to Freddy more than I usually do about how discouraged I felt.  I try not to do that with the boys, ever.  They need as close to a normal life as they can get.  But I felt bad for him, not being able to do such a basic thing, I felt bad for Janey, being so tortured by whatever demons torture her that she couldn't tolerate a normal store and I felt bad for me.  I mostly, at that moment, felt very bad for me.  Which I'm not proud of.

I long to put Janey in the car and drive---drive to some faraway place.  My fantasies don't allow me to drive away on my own.  I can't do that.  But I wish I could take Janey and escape this house, this life, even for a day or two.  I wish the autism was something I could leave at home, not for good, because Janey's autism is part of her.  But for a few days.  I wish I could have just a little, little, little vacation from the autism, for Janey and for me.

The day after not sleeping

The day after?  A day that feels like a lost day.  Janey wakes at 7 am, ready to go.  She is a little grouchy, but not severely.  She has a cheery ride to school, listening to her favorite song lately, The Battle Hymn of the Republic, at least until we get to a version she doesn't like, which causes her to scream like she's in agony.  We are almost at school anyway, thankfully.  I warn her teachers about her lack of sleep, in case she gets sleepy, but I know she probably won't.  I go home, and through sheer force make myself do the minimum I need to do---some laundry, some dishes, some packing things to mail.  I wouldn't even do those, but the boys have activities all the time that require certain clothes, and when I slack off, they have desperate mornings looking for what they need.  I try to keep my nap at a minimum.  Napping lately makes me depressed.  When I wake up, I feel disoriented, like someone has stolen time from me.  Tony picks up Janey and brings her home.  She is in a bad mood.  She eats a lot, as she has been lately, but as of right now, 7 pm, doesn't seem sleepy.  I don't know how that is possible.  She was up from 11 pm to 3 am.  My mind is a hazy cloud.

When we have days and nights like this, the task of raising Janey feels almost impossible.  It feels like it will defeat us.  I have to make myself keep the good times in mind, the times that Janey is happy and fun to be with and although vastly different than most girls her age, not necessarily tougher to be a parent to than any other child.  Those times are great.  But when we are sleep deprived and Janey is crying or hysterical or manic, those times fade in our mind and all we can see the present and the future, the present so tough we can barely go on, the future looking far from bright.

I don't like to be discouraging here.  I know people read this that are just starting their journey of autism parenting.  My story, our story, is not everyone's story.  Sometimes I am tempted to leave out days like this in telling our story, but that is not honest. I don't think it's fair to Janey, or to the other families out there, to pretend or to be a Pollyanna.  Hopefully, the truth tomorrow and in many days in the future will make for more upbeat reading.

Sleep, Depression and all that jazz

I'm starting to think that if I want Janey to do something, I should just say here on this blog she never does it, because then she will.  I said the other day she never naps, so of course a long nap of hers about ruined this weekend.

Friday night was a little tough.  There were meltdowns, which I wrote about, but I did practice what I preached here and got her calmed down and sleeping.  For a while.  She was up about 3am, ready to party. She hasn't done too much night waking lately, but when she does, well, it's not easy.  I'd say it's almost like torture.  I feel desperately tired but I have to make myself stay awake, to keep Janey safe.  I do everything within my power to try to get her to sleep, but if you have a child who has no desire to do things just to please you, who understands what you say only some of the time, who has an inner motor which goes off at its own times---trying to get them asleep is about as successful as trying to herd cats.  Janey alternated between crying and hysterically laughing.  We did what we often give in and do and put on Netflix, and let her watch some TV, which allows us to sometimes drift off for a minisecond if we are sure she's engrossed, but no longer than that, or she'll go into the kitchen and toss stuff around, or suddenly get a notion to jump on Tony or me, elbows out, poking us hard.  Even if none of those things happen, after a while something triggers a desire for a snack, and she starts demanding "I want ketchup!  I want sauce (tomato sauce)!  I want noodles!  I want chicken!  I want purple ice cream (which is what she calls all ice cream now)!" For variety she throws in a few "I want to go outside!  I want snuggle with Mama! (which always sounds so promising but only lasts a few seconds before she hops up again)  I want shoes on! (which means she wants to go someplace in the car)"  We say the right things---we don't eat in the middle of night, we are all going to sleep right now, it's not time to get up---but saying them, truthfully, does less than no good.  And so we exist in a zombie-like state until she falls back asleep, which she did about 7, and then she woke up again about 8.  

Usually she's up for the day, but for some reason, not Saturday.  She lay down about 11 and slept right until 2.  We tried to wake her half-heartedly a few times, but to be perfectly frank, it was pretty relaxing having her nap.  We had 3 hours of Saturday to do what we wanted with---of course, within the house and boys allowing.  When she got up, though, she was not in a good mood.  It was a fussy afternoon and evening, until she got back to sleep about 8 (no matter what, she goes to bed about 8.  Now watch that not be the case tonight).  And yes indeed, she was up at 2am.  We gave in pretty much and just got up with her.  We watched TV, including at around 4 a very interesting nature show about Australia.  Janey drifted off around then, and we were back to sleep until about 7.

That's a long story of sleep and not sleep---you are probably asleep now reading it.  And it has induced in me today a huge bout of depressed feelings.  When I have a few nights like that, I get NOTHING done the next day.  I don't get laundry done, work done, cleaning done, dishes done, anything at all.  Tony does a little better, and he has been a saint today---cooking and taking Janey to the playground and all that.  And I sit around and hate myself for being so tired all the time.  I try to reason with myself---I say all the right things---that anyone would be tired after a few nights like that, that just getting up and taking care of Janey every day is work enough, so on and so on.  But I hate days like this.  I hate feeling like a loser, like someone who barely has the energy to crawl to the couch and crochet all day.  I hate the mess around me that never gets cleaned up, because I never have the energy to do it.  I hate my medical issues that make me even tireder---the latest fun additions there are Sjogren's Syndrome  and Undifferentiated Connective Tissue Disorder, which I won't get into the details of because my mother always taught me that no-one wants to hear all the details of your medical issues, but you can click on the names for a link if you are interested---but they both have the side effect of severe fatigue, as does my thyroid disorder.  And yet I still feel like a lazy person for being tired, a hypochondriac although I have blood tests with concrete numbers to show I do have a reason for being so exhausted, beyond just being 47 and caring for a toddler in an 8 year old's body.

This isn't my best written entry here, I know.  I am rambling a bit, probably because I can barely keep my eyes open.  But it helps to write.  Thanks for listening, if you've made it this far!

Tired of tired, impatient with patience

Janey is asleep now.  She fell asleep, today as yesterday, at 5:30pm.  Far too early, as that means she wakes around midnight with lots of middle of the night energy.  And although Tony trades off with me, and we get her back to sleep after a few hours, the night is not restful.  The nights are often not restful.  Janey almost always ends up in bed with me,  She is a bed hog, and she kicks.  She has no notion of personal space, and she thinks nothing of elbowing me hard to get where she wants to be.  I don't think I ever sleep solidly at nighttime, not for years now.  And I'm tired.  The tiredness is awful now.  I have a doctor's appointment in a few weeks, and I have some big questions for the doctor.  The last round of thyroid testing I had showed my thyroid was not working well again, but she chose to not raise my dose of replacement. I take a pretty high dose, and I guess there is a max to it, although I'm not at that yet.  But I'm noticably more tired than usual.  I am feeling at the point where almost everything feels like an effort to do.  And when you have an 8 year old who is dependent on you as much as a toddler would be, as well as two teenage boys, that is not a good way to feel.

With the tiredness comes a lack of patience.  I am usually a patient person, with a very, very long fuse.  I am skimpy with praise for myself, but I feel I can say I'm more patient and less likely to lose my temper than most people.  But that is being tested.  Today, several times, I snapped at Janey.  I rarely do that.  I know she is generally doing the best she can, and the things that she does that make me annoyed are not her fault.  But today, I wasn't able to not snap at her.  It was mainly over her just not responding to what I said.  I asked her to come over to get her pullup changed and her clothes on.  I asked again, and again, and again.  The fifth time, I yelled.  She looked startled, and did come over.  Later, when it was time to get her coat on, same story, and again, after a bit, I yelled.  Freddy said "You are getting upset with Janey today a lot"  It was noticably not like me.  It's not how I want to be.  But on days like today, I just see no end, no rest in sight, never.  I still need to do so much for her that most 8 year olds would do with ease.  I can't tell her in the night if she wants to be awake, she has to take care of herself.  I can't do anything but watch her when she is awake, in the daytime or nighttime.  I got distracted today with the exciting joy of putting up some charity calendars I bought at a thrift store.  It probably took 2 minutes, but that was long enough for Janey to find a huge glass and pour a whole 2 liter soda in it.  Of course it overflowed, especially when she stuck her hand deep in the class for some reason.  She was soaked, the soda was wasted and I just felt like giving up.  The whole time, I was in audio range of her, as she talked to herself.  It's not like I'm running down to the neighbor store to buy things.  This is when she is right there in the next room, but I guess next room privileges are more than I can have right now.

So, we go on.  We dread the phrase "I don't know how you do it", because I don't know how I do it, either.  I do it because, really, what else can you do?  We all do it, the tribe of autism mothers.  No matter what ways our views might differ, we all are together in doing what appears to the outsiders to be not doable.  It's reminding me of cartoons, where when a cartoon guy runs off a cliff, he's fine until he sees what he's done and looks down, and then he falls.  I guess we shouldn't look down.  We should just keep running, and not realize there is no surface below us, a lot of the time.

The worse screaming night ever

Yes, indeed, last night wins the price, and the competition was stiff.  In terms of intensity, it was the worse screaming night ever.

The last few days have been building up to this award-winning night.  Janey has been crying off and on, having fairly rough nights, crying in the car and in the evening as I wrote about yesterday.  Yesterday morning, she was tough but not impossible.  I managed to grocery shop with her, and although she wasn't happy as I dropped her off at school, she wasn't that bad, relatively. 

I got a call about 3:15 from Janey's regular ed teacher that she was having a rough day and we might want to pick her up early from afterschool.  The teacher was great---she said it wasn't an emergency and Janey might be fine, but she was just having a tough time.  Tony had planned to come home early and get Janey to give me a break from the car crying, so we decided the minute he got home, he'd head to get her, resulting in her being picked up about 45 minutes early.

When Tony got to the school, Janey was very happy, as she was outside running around.  But he said before they even reached the door of the school, she started crying.  And she screamed all the way home in the car.  Although Tony certainly had believed me as to how bad the car crying was, he got to live it, and he was shaken.  He's the world's best driver, unlike me, but it was still very hard for him to drive with the loud screaming.

I heard Janey in the driveway the minute they got home.  She screamed as they got out of the car, she screamed as they came into the house, she kept on screaming.  She screamed for about three hours straight. Now, I don't mean mild crying or whining or even loud crying.  I mean screaming, the kind of screaming that would not be at all out of place in a horror movie.  Absolute all out no holds barred screaming.  So loud that talking was impossible.  

While she screamed, she ate.  She ate everything Tony cooked in a vain attempt to calm her down.  She barely stopped screaming while swallowing.  Once in a while, she spiced up the screaming with a screamed phrase.  Mostly, it was "You've got to stop that!" which Tony had said at one point in the car.

At one point, we asked ourselves whether we should go to the emergency room.  It was that bad.  And we might have, had we thought it would do a single bit of good.  But it wouldn't have.  There isn't anything they could do that we couldn't do.  That is the sorry state of mental health services for children in this country.  Here's an article which was in today's paper that addresses that somewhat---  link.  If Janey had been physically sick, we would have had access to the best care in the world, minutes away.  But for her kind of sick, mentally sick, there is no care.

After hours, Janey screamed her way to sleep.  She had calmed down a tiny, tiny amount before that.  She is still asleep, and I hope with the strongest hope possible today is better.

So---what caused this?  That is something we will probably never know.  Janey can't tell us.  I doubt she knows herself.  My theories?  Very few.  One thing that has been in common the last few nights is that at some point during the tough night, Janey urinated a huge amount.  I think she might be holding her urine at school, not wanting to wet herself.  Anyone would take her to the bathroom if she asked, and they do take her regularly on a schedule, but when she isn't ready to go at those times and wants to go another time, she would have to ask, and  with the relative lack of toilet training skills and talking skills, that isn't something that she does easily.  Two of the nights, she used the potty, last night, she wet in her pullup.  I really don't know if that's it.  She could be feeling overwhelmed about something.  She could be hearing sounds in her head.  She could be on the verge of a breakthrough, as   was commented here yesterday.  She could be physically sick, although I don't think so.  She could be any number of millions of things she has no words to tell us.  

It breaks my heart to have Janey so sad.  It also breaks my heart that the boys were not able to  have any semblance of normal family life last night.  William had his first college interview.  That would be a great thing to be able to talk to him about, to celebrate.  But we heard little bits and pieces between the screams.  That isn't fair to William.  But not much about this whole gig is fair.  Not to us, and not to Janey.  Not to anyone.

Anything but Crying

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

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

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

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

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

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

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

Tired of feeling this way

I haven't written in a few days, because I was going with the old saying---"If you don't have anything nice to say, don't say anything at all."  I don't really have anything mean to say, but I don't have anything nice to say either.  I've been depressed for a bit now.  There are days I feel better, and days I feel worse, but overall, I've had my particular brand of depression, which mostly involves having very little energy and sleeping a lot. And yes, I have a doctor's appt. next week and I will talk to her about it, but it's not the kind of depression that I think much can be done about, besides things I've already tried or am already doing.  It's situational depression.  I'm depressed about specific things, and of course high on the list is Janey.

Not Janey as a person.  I'm not depressed she is herself.  I'm depressed, I think, because I feel like I've missed some boat in helping her.  I think I've been reading too much about autism---just following news leads in my Google news section about autism.  I missed the early intervention boat on her.  It doesn't help me feel better about it that she wasn't autistic then, or if she was, it was a pretty subtle thing.  I remember her PT saying how amazing it was how social Janey was, how much she talked.  I know then she eagerly greeted the PT every day.  I don't think about things like that a lot.  Sometimes I like to almost forget those first 3 years, to tell myself that Janey NEVER could talk like that, because lately, despite all the years that have passed, her horrible regression is upsetting me more than it has in a long time.

The only reason I can figure this is the case is that Janey seems to be in a plateau right now, or maybe even another regression.  Her talking is not good lately.  She is saying less and less, and what she does say is getting turned into shorthand a little.  For example, the phrase I hear most often at home is "Snuggle on Mama's bed!"  It's her response to any kind of upsetting thing happening---a scary part in a show, a reprimand of any kind, or just some impulse from inside that bothers her.  But now she's mushing the phrase together, just looking at me and saying "nuggmamaba" or something like that, like that whole phrase is too much work.  It's like every word costs her a lot of money, and she's a saver.  For years and years and years, when I leave her in the morning at school, she gets told to say goodbye to me, and she just about never does it spontaneously.  Once she's reminded, she'll say "Bye!"  Then someone will say "Bye WHAT?" and she'll reluctantly say "Bye, Mama!" or something Bye someone else, if she's not in the mood to remember the right name to call me.  And lately I'm just wondering those useless questions---WHY?  Why is it so so so so hard for her to learn things?  Why does her talking never really progress?  Why if I look at reports or my own blog from 3 or 4 years ago, is her talking at the same level now it was then, or less?  Why does she still often have crying spells where something is obviously badly bothering her but she can't tell us why?  Why does she not progress?  WHY ISN'T SHE GETTING BETTER?

Isn't it supposed to work that way?  Isn't even autism supposed to follow those rules---you start at one level, and with a lot of work, you get to the next level?  And Janey doesn't.  Or she might in small ways, but not big ways.  And around her, other kids with autism do, other kids with other delays do.  I am confident she has the right teachers, the right therapists.  I am even confident, in my better moments, she has the right parents and brothers, that we are doing the right things, the things that should make her able to learn.  After all, we raised her two brothers so far rather successfully.  I know she has autism, I know she has retardation.  But that should not stop her from being able to learn.  Or should it?  I guess I know sometimes it does.  I've read the rare book that does admit that---that's it all not a guarantee in any way, that some kids don't progress.  But, and I'm letting the inner thoughts out here---why me?  Why Janey?  And of course, the answer is Why Not?

So probably I should have taken that good advice and not written if I don't have anything positive to say.  I'll think of this post as what I guess blogs can sometimes be---a diary other people can read, if they are in the mood to get depressed.  And I'll buck up soon, I promise.

What a difference a few days makes

Janey had a very tough stretch around her birthday. From about Tuesday to Saturday, much of each day was taken up by hysterical crying. It was awful, for her and for us. We really had and have no idea what was wrong. This kind of stretch seems to happen about three or four times a year. Thankfully, and knock on wood, the length of the stretch seems to be getting gradually shorter over time. But it's still almost impossible while it lasts. And then Sunday, Janey woke up happy. And she's been happy, most of the time, today also. I hope it lasts. It tends to, once she gets out of the sad stretch. She's not manically happy, just regular cheerfully happy.

And of course I would guess I'm not the only one thinking this sounds a lot like manic-depression, or bi-polar disorder, or whatever it is called now. Whatever it is called, I've read it is no longer diagnosed in children. And I guess I'm kind of glad of that, in a way. I don't need any more labels for Janey. I hope by the time she is an adult, she doesn't get these spells. But the fact remains that something sometimes makes her very sad for a while, and something sometimes makes her manically laugh all day and be very wound up and wild for a while. Whatever it is, it's enough of a pattern over the last 5 years so we can kind of recognize the moods coming on and going away.

When Janey gets happy after being sad, it's wonderful. We appreciate her all the more. Tony and I look at each other many times a day and we are both thinking the same thing---if she could be happy, nothing else matters---the autism, the retardation, the lack of skills like toilet training---none of it. She can be the most delightful child on earth. Tonight she was thrilled to "help" Tony with laundry, thrilled to eat a supper of hot dogs and cabbage slaw, thrilled to watch a Disney video WITHOUT singing that she had never seen before. Earlier today, she said to Tony "I want soda!" and he said "I want soda too" and then just to be funny, "I want soda three" and she said without missing a beat "I want soda four"! This afternoon, she said "I want to go to Va-Vere Beach, but that's silly. Maybe the weekend" I've never heard her say "weekend" before. I know she was quoting me, but it was still great to hear.

I wonder all the time what is in Janey's head. What drives her moods? What does she think about? How can I help make sense of the world for her? I just don't know. I'm going to keep trying to figure out, though.

Thoughts about depression

I don't know if depression is the right word for what I often feel. It's not depression of the kind that comes out of no-where. It's depression that sneaks in quietly, evaluates the facts and settles in for a long stay, never completely taking me over but eating away at the edges of my mind. A quick search for "autism" "mothers" and "depression" turned up this article. It's 5 years old, but not much has changed in the world of depressed mothers. I like it very much, because it politely says what I often think---it's depressing to be the mother of an autistic child because it's just plain a very, very hard life with no relief in site. It's not some complicated to figure out thing, as the study mentioned in the beginning of the article thought. It's what the author of the article says---the social isolation that having an autistic child breeds, the lack of sleep, the monetary problems from not being able to work or from medications or treatments, the battles to get your child what they need, and most of all, I think, the future not having relief in site---the knowing that until the day I die, I will be responsible for Janey.

I'd add a few to the article---the tension that the autistic child creates in a household, that leads to everyone being on edge and more prone to fighting, the endless cleaning up of the messes the autistic child makes, the media finding a new way every day to point out how you inadvertently caused your child to be autistic, the few unkind strangers who make going out in public a minefield, the sadness from not ever being able to give your other children enough time, the worry about what is happening to your non-verbal child when you aren't with them...I probably could go on for a good long while.

And so I don't think it's strictly right to call what other parents and I often feel "depression". I call it more...a logical reaction. Tonight it is feeling that way, anyway. Back to trying to be upbeat next time, I promise.

Crying, Depression

Janey has had a tough 4 days or so. She has been doing a lot of crying---not all day long crying, but crying bouts that last hours. She has been waking up crying and going to sleep crying, with some calm times and some crying times in-between. I have no idea why. I rarely do. Summer school is going well, things are pretty calm at home, but still, she cries. The best way we deal with it is get a lot of food into her fast. It often seems hunger related. Or get her active--take her out someplace, although that is not always possible at 6am or 10pm.

And I realize that when she cries, I get depressed. I get hopeless feeling. I can't deal with it well at all. I just get a feeling that there is no end, no cure, nothing I can do to fix anything. As I've said before, it's like colic in a baby. You can't make them happy. You can't console them. You just have to last it out. But with Janey, is the lasting it out going to be the rest of my life? On depressed days, I don't see a way it won't be. She makes small bits of progress, but if I am honest with myself, not big bits. She knows a little more academically, but her ABA specialist has seen that some of it has been lost this summer, even with his great continued ABA. I don't know how next year will be in school. She is not truly talking much more than years ago. There are bits and pieces here and there, and she is understanding more, but her speech is still so limited.

And of course I might not be seeing things clearly. That is what depression does. I don't know if this is really what people mean by depression. Somehow I picture depression as a wave that hits you for no reason. There is a reason here. But it seems to affect me like people say depression affects them. I slow down. I can't think quickly how to make things better. I feel trapped, hopeless. I would do anything to make things happier for Janey, if there was anything I could do, but most days, there isn't. It's like a weather system. It sweeps in and then sweeps out. You have to ride it out. Hurricane Janey.

The Political Incorrectness of Negative Emotions

I've been reading a book to review for Amazon called When We Were the Kennedys. I haven't finished yet, but can already say it's a great book. It comes out in July, if anyone is interested. Anyway, although it's not the major point of this memoir, the book talks about the author's sister, Betty, who "in those days was called retarded". As I bet most parents of kids with what we now called special needs do, I compared her to Janey. She was higher functioning (another now term) than Janey---she went to a regular class, although she in no way kept up with the other kids, she could answer questions and write her name and knit a little.

What struck me about it all was how it was then (in the early 60s) okay to express that having a child like Betty was in a lot of ways very, very hard. It was okay to think of it as a tragedy, in a lot of ways, and for other people to feel sorry for the family. It didn't seem like people were told to see Betty as a blessing or as a treat from God for being good parents (although the family was very religious and did seem like very good parents). Betty was loved, but it was not presumed that she was somehow sent to teach everyone lessons in tolerance and love.

Today, I think there's a huge amount of pressure to think positively about disabilities. And that is good, in a lot of ways. I wouldn't want people seeing Janey as a tragedy, or people just shaking their heads and assuming that there's nothing that can be done for her. But in other ways, it puts a huge amount of pressure on parents. It isn't even politically correct in most cases to say truthfully that Janey is retarded. "Retarded" is a bad, bad, bad word. You can say "developmentally delayed" or "cognitively challenged" or terms like that, but the problem can be that no-one quite knows what you mean. I still think often of when one of my oldest friends, that doesn't see Janey often, was shocked when she realized how behind Janey was. She had equated autism with what a lot of people do---someone quirky and brilliant. And I said the bad word. I told her---Janey is retarded. I feel guilty writing that, like I'm being horrible. But it's true. It's a negative word, but why is that unacceptable? It's not a blessing that Janey has so much trouble learning. It's not a test, it's not a puzzle to be figured out. It's something that is wrong with her brain, and makes it very hard for her to learn. I don't see that as a positive thing.

If you do a quick read of a lot of blogs about disabilities out there, you can see the pressure put on parents to be positive. I think there's a lot that doesn't get written down. Or maybe I'm the only one. But I don't think so. I love Janey, I often delight in Janey, I find her fascinating and adorable and I in many ways love being her mother. But all that being sad, I have huge amounts of sadness, anger, discouragement, depression and frustration over how life with her is. This morning is an example---she screamed from the time she woke up, she fought getting dressed and her hair done with tooth and nail, literally, she kicked things around in the car, she ran away from me in the schoolyard, she tossed her shoes away as I tried to get her into her classroom. I don't feel positive about that. I feel worn out, discouraged, depressed. I feel those feelings for myself, and even more for Janey. I worry about her life. I despair when I think about her when I am someday gone.

There was so much about the past treatment of people like Janey that was awful. There was no special education, there was little understanding and life for the Janeys of the world was bleak. I'm certainly in no way at all wishing it was then. But I do wish it was still okay to not be positive now and then, to openly say "This is extremely hard. This is not fair to any of us". And so I'll say it.