Summer without summer school

A couple days ago, it occurred to me I'd barely thought about the fact that Janey wasn't in summer school.  It wasn't just that I didn't regret my decision not to send her---I barely remembered that usually she has gone. 

It's not that everything is perfect, but more that summer school always seemed to add more stress than it took away.  The first day, the bus showed up, although I'd sent back two forms saying she wasn't going, and also answered an automated phone call that way.  That shows about how organized summer school is.  The bus honked---45 minutes after the time the form I'd received (also after saying over and over she wasn't going) said the bus would get there.  I pictured the other summers, waiting out in the hot air for a bus that took forever to come, trying so hard to convince Janey not to go back inside and take off her shoes, trying to keep her calm and not screaming.  And then when she got home in the afternoon, dealing with her being very unhappy, most likely due to a program that just wasn't good.  And getting calls like the one I did last summer, from the only teacher so far I've ever encountered in the Boston schools that just didn't seem to like Janey, asking me if I had any ideas for keeping her from crying all day.  I did have an idea---and it was to take her out of summer school for the rest of the summer.  Next year, I'll try again, as Janey will be in a different program then, a pre-high school one (hard to believe).  But for now, I am quite sure I made the right decision.

What have we been doing?  Not as much as I planned to, as always.  I've tried to get Janey out of the house some every day, and mostly, we have---maybe not to exciting places, but to stores or fast food or errands.  We also do our daily walk to the "ice cream store" for chips.  We play outside after that walk.  Up until this week, Janey was napping a fair amount (and still sleeping at night).  She needs a lot of sleep, and I don't think she always gets as much as she needs during the school year, despite a bedtime of 7pm (which is her choice---not one we enforce!)  She watches plenty of videos, and we snuggle a lot.

The thing we've been doing I love the most is reading.  I've always read to Janey, of course---books are my life, and I love to read aloud to my kids.  But Janey didn't always want to hear what I had to read, or she just wanted the same book over and over and over until I couldn't take it any more.  Her teacher told me about a way she had been getting Janey to pick books and listen to them more, and I have been using a modified version of that.  I pick out three books I'd like to read to her, and ask her which one she wants.  She picks one, I read it, and then I set it aside and show her the other two, and ask again.  I read her next choice, and then lastly read the third one without asking.  Usually she doesn't want to hear all of the third one, which is fine, but sometimes she does.  Then I ask her if she wants any of them again, and often she re-picks the first choice.  Then I put the books back on the shelf.

Today I tried something new---reading her a chapter book.  I picked "Betsy-Tacy" by Maud Hart Lovelace, one of my favorite books and the start of a great series.  She listened a bit, and then did something that I loved.  She said "I want...I want...bones!  Bad!"  I knew right away what she meant.  She wanted to hear a book we've been reading a lot, "Katie Loves the Kittens" by John Himmelman.  The cool thing is that the book is about a dog, but doesn't have a bone or the word bone in it, and Katie the Dog is a little naughty, but no-one calls her bad.  Janey just picked the words to describe the book that related to it---"bone" for a dog and "bad" for how Katie scares the kittens by mistake!  It's very rare Janey forms a totally new request like that, one that shows she understood the book and wanted it enough to work hard to tell me what she wanted!

We've had our share of tough times, of course.  One day, Janey had been napping and Freddy and I were watching something on TV.  When Janey woke up, she wanted her own show and she wanted it RIGHT NOW.  I told her she could watch it when we were done, and she started screaming.  I said "You know, Janey, you are being a little selfish"  Evidently, that was not good for me to say.  Janey screamed loudly for a long time.  I gave her a shower, which usually calms her down, but it didn't, this time.  Then I snuggled on the bed with her, with some screaming still going on.  I did what a do a lot---tried to give her words for what she was feeling.  I said "You know, it's okay if you want to say 'I am very angry at you, Mama!  I didn't like what you did, Mama!' You can even say 'I hate you, Mama!''

Well, that is just what she did want to say, I guess.  She immediately said "I hate you, Mama!"  She said it like she meant it, and I am pretty sure she did.  Then she said it about five more times, in an ice cold, angry voice.

I had a mixture of emotions.  I was very glad she was expressing how she felt!  But at the same time, it was something I've never really heard from her before, and I'm pretty sure never from the boys (there seems to be less of that kind of drama with boys!)  It surprised me that I felt hurt---but that is part of being a mother, especially of a teenaged girl, and it's part of how Janey is in many ways no different than any other 13 year old, especially when they are spending large amounts of time with their mother.

Most of the time, though, Janey still seems to like me fairly well, and although some days I'm quite (extremely) glad to see Tony coming home from work so I can collapse for a while, we are getting through the summer in pretty good form.  I hope Janey would agree with me.

The Family Motto

When the boys were young, before Janey was born, I read a parenting book that talked about the importance of having a family motto, a family mission statement.  I wasn't really sold, especially because most of the examples given in the book were of families developing a motto that spoke to how important high academic achievement, or charitable giving, or constantly striving for excellence were, and unless most kids the ages of mine were far more forward looking than my boys, I didn't buy it.  But out of curiosity, I asked Tony what he would pick for a family motto, and he said "Enjoy Life!"

I've thought often that really is pretty much our family motto.  Of course, there needs to be a background of The Golden Rule type thinking, because if enjoying yourself involves hitting each other or petty crime, that isn't what we are going for.  And I hope we taught the kids basic respect---for us as parents, for teachers and friends and themselves.  But when it comes down to it, life is pretty short, and if you aren't enjoying yourself at least a good deal of the time, something probably needs to change.

What's making me think of this motto lately is a few essays or posts I read by autism parents lately.  (and here I should include a thank you to the amazing mother of Sophie, who has a Facebook page I greatly recommend, "On the Train With Sophie", as I don't do a lot of reading about autism online, and I wouldn't have read the posts unless she had referred to them on her page).  One was a video post by a mother talking about the sadness she felt over realizing her son, basically, wasn't ever going to be typical.  The other was about going to see Elmo on stage, how a mother had to force her son to go and endure the stares of those around her.

I won't put down the mothers involved, or judge them.  It's a long journey with all mothers of autistic children, and we all aren't going to agree or feel the same as each other at every point. 

However, I realized that the motto we made up in a laughing moment years ago has actually helped a good deal with how we view Janey and how we make decisions about and for her.

I've despaired often as I've gone through life with Janey (and life in general, of course) but I don't think I've ever felt despair specifically that she was not ever going to be typical.  Most of the despair I've felt is that she wasn't happy, and that I wasn't happy, all of us weren't happy, because we couldn't find a way to help her be happy.  The fact that she will never go to college, or have a job, or live on her own---I wish she could do those things, because they can be sources of happiness, but they certainly aren't the only route in life to happiness.  More than I'd have guessed, the academic and vocational limitations that Janey has don't really upset me at all.  And that ties back to the family motto.  You can certainly enjoy life without college, or a job, or your own home.  Sometimes those very things bring a lot of UNhappiness.

There isn't any one right way to be happy.  The mother knowing that if somehow she could get her child to go see Elmo, he would like it---well, maybe, but the pain to get there?  There are a lot of things in life Janey might enjoy if we worked hard at getting her there, but is it necessary?  There's a lot she enjoys hugely that she can do right now.  Happiness doesn't need to be mainstream.  Janey loves to ride aimlessly in the car listening to music.  She loves to watch certain episodes of TV shows time and again.  She loves to have her father cook for her.  She loves to "steal" our coffee on weekends.  She loves to take showers.  She loves to eat chips in the driveway while the stray cats try to get some.  She loves to dance with her brothers. So---maybe she'd love Disneyworld, for example.  But first we'd have to get her on a plane, we'd have to get her used to long lines, we'd have to keep her contented somehow while we waited for the special moments she might really enjoy.  Is it worth it?

Of course, there is more to life than enjoyment.  But as a goal, as a motto, I think it works well, perhaps especially for Janey.  There is so much of life that is hard for her, just by being someone living a bit less typical a life than most.  So why not aim for as much of her life to be happy as we can?  Why despair over what she isn't going to do, when we can instead try to make what she CAN do enjoyable for her?

Every Morning is a Triumph

I just got Janey on the bus, at 6:15 am.  As I walked in the house, I was beating myself up a bit.  Her hair wasn't as I'd like it, she had sneaked some onion and garlic chips and her breath betrayed that, she had on two different gloves, her hastily picked clothes were not the greatest look for her...it was not my finest early morning parenting day.  But then I defiantly told myself---NO.  Getting her on that bus at that hour was a triumph.  It was the kind of triumph all you parents of other kids like Janey have every day.

It was a triumph Janey got a full night's sleep, and woke up without protest.  Sleep is not something any of us take for granted.

It was a triumph that I got Janey dressed.  I felt guilty thinking how I should be insisting on her dressing herself more in the mornings.  But doing so would necessitate getting up about an hour earlier.  We are on a very tight schedule every morning, and I'll take her cooperation over her independence when it comes to quick dressing any day.

It was a triumph I did her hair at all.  I know there are a few tangles.  I hate that.  But as I worked to brush them out, Janey screamed and had the look in her eyes that let me know that if I kept going, there was no way on earth we'd be getting on that bus.  So I resolved to brush them out before bed tonight, and I did my unskillful braid hairdo, and we called it good enough.

It was a triumph I brushed Janey's teeth well---twice.  She allows a thorough brushing without complaining.  The second thorough brushing came after she found the chips while I rushed to get dressed myself.  I think she might still have a little onion and garlic breath, but so be it. I am glad Janey eats breakfast at school, but a little chip appetizer isn't a huge deal.

It was a triumph that Janey left the house with a coat, a hat, a scarf and gloves.  The gloves were two totally different gloves, both right hand ones.  They are approximately the 30th pair of gloves she's had this winter.  She doesn't keep track of things like gloves or scarves.  If I were to buy her a matching set every time an old set disappeared, our entire budget would be spent on gloves and scarves.  So finding two to put on is a win, a triumph.

It was a triumph we were on the sidewalk two minutes before the bus arrived, and Janey was happy.  I had to grab my phone at the last minute so I could put on the SpongeBob songs she currently needs while waiting.  If the connection had been down or if I hadn't been able to immediately locate my phone, we would have had a problem, to say the least.

It was a triumph she got on the bus on her own, and sat in a different seat than usual, as I saw the aide tell her to.  She is like Sheldon on "The Big Bang Theory"---she doesn't care for being made to sit in the wrong place.  But she did, without protest.

It is a triumph that she is off to school.

I think those who teach kids with autism understand the triumphs that every successful morning include.  To anyone else out there who might not, when you see Janey, hair not looking perfect, gloves unmatched, hint of chips on her face, when you see that, keep in mind the triumphs it took to get through the morning.  To the other parents like myself---here's a coffee toast to you. May you have many, many small triumphs today.

Little Things Add Up To Big Stress

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

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

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

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

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

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

Oh, shut up, Perfect Woman!

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

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

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

On admitting it's ME who is overwhelmed and frustrated...

We are at Friday of spring vacation week.  Tony is taking today off, which is a huge, huge, HUGE relief.  It's been a long week.  Mostly for me, more than Janey, and that is what I'm thinking about.

Last summer when I talked about how Janey's life had little variety, I was very taken with the insight a lot of you gave me---that Janey might not mind the lack of variety, and in fact might like it.  I think you were right.  Janey takes enjoyment in simple things, and she loves having her days follow a pretty predictable script.  She is able to handle changes more than some kids with autism, but she likes it if the changes are within the framework of a general sameness.  With that in mine, I decided this week I would follow Janey's lead, let her set a routine and go with it.

Janey set a routine the first day and without me reminding her or prompting her, she requested it be followed for the next three days.  This is how it went....First, she woke up about six.  I snuggled with her a bit, we had some breakfast, she watched a little bit of TV.  Then she said "Go to the ice cream store?", which, as you've probably heard, is the convenience store near us.  We did the routine of getting dressed for the day, and walked to the store.  Janey loves this.  I got coffee and she looked for a long time at the chips and picked a bag, we payed and walked home.  Then she ate the chips outside while I had my coffee.  

Next, we went back inside for a little more videos time.  Then, Janey asked for a shower.  I set it up and she had one---washing her hair or not depending on if she needed it.  I let her take as long a shower as she felt like.  We got dressed again, a little more videos and then Janey asked for a car ride.  I suggested a place, which didn't really matter, as she wanted simply to be in the car.  We drove, got out wherever I had said, Janey put up with wherever we were for about five minutes, then asked to go home.  

The huge hug when Daddy gets home

When we got home, Janey screamed because the car ride was over.  That's where the routine still was routine, but not a very fun one.  For the rest of the day, until Tony came home early about 2 (he went into work very early so he could come home early), the routine was to scream and ask for Daddy.  As early as I could do it without it being too long, we went outside to wait for Daddy.  When he got home, Janey acted like she was seeing a returning soldier after many long years.  The smiles and hugs were incredible.  Then they went for the kind of car ride she really likes, long and without destination.

By last night, I was in a mood and a half, and I realized something.  As much as I want to be the perfect autism mother, as much as I feel like my own wants shouldn't matter, they do.  And I was bored, frustrated, hurt, tired.  

The ride yesterday was the last straw.  For the ride, I said we could go to Panda Express.  None of us but Janey like this fast food Chinese food, but she loves it.  However, I didn't realize that she had a routine in mind.  There was a line when we got there, as it was lunchtime.  I don't think Janey had ever experienced a line there before (it's not the most popular place, and is right next to a Five Guys and a Chipotle that get most of the customers) and she started freaking out and pushing people.  I got her to wait, we got our food, we sat down and she quickly ate the beef dish she likes, in about three minutes, and she was ready to go.  I had barely had a bite.  She grabbed the tray and wanted to throw it out.  She was rapidly becoming frantic and hysterical.  I gulped down a few bites on the way to the trash and threw out the rest, as the few other customers stared.

Then, Janey wanted to go in the Chipotle.  I realized that probably every other time she'd gone to Panda Express, it was because the boys wanted Chipotle, and Tony took her to Panda Express instead.  Then, they came over to see us at the Chipotle.  The fact that the boys are away at college and Tony was at work didn't matter.  We were supposed to go in the Chipotle and see them.  I got her into the car, screaming and highly upset, and she spent the rest of the afternoon highly angry.

When Tony got home, I started ranting.  I had done everything I could for four days to make it a week that would work for Janey.  Although I fully understand that she has a need for routine, although I know as well as anyone can that she is easily triggered by changes, I was just tired of it.  I was tired of trying so hard to keep her happy.  I was tired of dealing day and night with screaming.  I was tired of....well, all of it.  

And that's the thing of it.  All of us autism mothers and fathers are human beings.  We do our solid best.  But sometimes, it gets to us.  And that is where it gets hard.  Because what do I do?  There is no break from this.  There is no end to it.  There is no day that Janey's needs won't be overwhelming.  This is my life.

Last week I talked about the lack of programs or activities for those like Janey, with high needs autism.  The truth is, Janey doesn't much want outside activities, I don't think.  I do.  I want the break they would give me.  But the few activities that do exist---classes and therapies and so on---require I be there with her.  And that is just harder than no activity at all, and not worth it for something that in my heart I know she doesn't really enjoy anyway.  It's me that needs variety, and a break, not Janey.  

I got over my rant last night.  I am lucky in so many ways, and one of the top pieces of luck is one heck of a wonderful husband, who is taking over with Janey today.  But I keep being struck by that one thought---parents of kids like Janey are people too.  Sometimes it seems like we are supposed to not be. But we are, and sometimes, we are overwhelmed.

Winter

When I was little, I used to feel upset when people would say February was their least favorite month, because my birthday was in February, and it somehow felt like a personal insult.  Well, I'm finally forced to admit I'm not too big on February myself.  I haven't written for a while.  I've been feeling blue, and winter feels long.

I am sure it's not politically correct to say so, that it's one of those things I'm not supposed to admit, but sometimes, the unchanging nature of life with Janey gets to me.  Her progress lately, if there is any, is very, very slow.  Sometimes it halts altogether, or moves backwards for a while.  With typically developing kids, the changes in their interests or hobbies or friends or activities can move at a pace so fast it's hard to keep up with.  With Janey, that isn't the case.  She watches the same videos, over and over and over, that she did five years ago.  She doesn't have friends.  She doesn't partake in any outside the home activities.  Every day feels a lot like the day before. And of course, much of that is on me.  I should somehow make her life more varied.  But I am not sure how.  It's not like there is a huge list of possible classes or lessons or clubs waiting for her to join, or friends calling to get together with her.  She goes to school and she comes home.

As people have said to me often, it's very possible Janey doesn't crave variety in her life the way others might.  She might be very content with things staying the same, and indeed I think that might be the case. But as this winter wears on, I'm feeling---I'm not sure.  Restless.  Worried.

In the background of all this is the tense feeling political news, the uneasy national mood.  It used to be that the internet provided much of what I needed to keep feeling connected to the outside world.  But lately, it's hard to get online without feeling bombarded with strident differing views of every topic.  I rethink every comment I might have---is this going to set someone off?  I think of myself as mainly apolitical.  What bothers me is not so much any actual players or issues in the political scene, but the tone of the whole debate.  It feels like a "gotcha" kind of game, like an argument that can only be won by being fierce, or angry, or hyper-alert.  And where does that leave someone like Janey?  Where is the caring for those not armed for such a battle?  I had a strange dream the other night, a dream we were somehow at war and Janey had been drafted to fight. I screamed out to whoever was in charge "What kind of world is it when you expect someone like Janey to be part of warfare?"  And that is it.  It feels like there is little place for those who are dependent on others, who can't get out and fight for their rights.

So...we keep on.  We do our best, all of us out there living this life, to give our kids the best life we can.  Janey will come home from school.  I'll ask her about her day, as I have so many hundreds of times.  She won't answer.  I'll try to get her to use the bathroom.  She won't.  I'll end up changing her clothes and her bedding.  She will ask for cheese, for chips, for salami.  I will have them or I won't, she will eat them or she will scream.  She will want a shower, and she will ask to get out of it when she really means she wants the water adjusted.  She will ask to watch Kipper, and then I'll put on the wrong episode and she'll scream.  She will ask for a car ride.  I'll tell her Daddy will be home soon and maybe they will take a ride. I will hug her and tell her I love her.  She will laugh and hug me back, and we will get through another day.  And that is how the years will go on.

CVS Hell

Janey is happy right now, watching TV and cheerful.  Which is amazing, considering our ride home from afterschool today.  The great high school student that often is with Janey at afterschool reported she had a good day, but started crying just before I got there, which is not uncommon.  I think she knows when it's around time for me to be there, and if I'm not there right when her mind tells her I should be, she freaks out.  She was crying hysterically all the way to the car.  I told her I had chips for her, which made her settle for a minute, until she saw they were cheapo Lays BBQ chips, not the Pringles Salt and Vinegar that I am SUPPOSED to have for the ride home.  She pushed the chips away and screamed "CHIPS PLEASE!" It wasn't really the chips, I know, but that didn't help.  She screamed the first 10 minutes in the car at an unbelievable volume and in an unbelievable tone.  I was just barely able to drive.  She stayed in her seat belt, but writhed around so much I thought of a new fear, that she could unbuckle and jump into the front and cause an accident.  I made a decision---we would stop at the CVS for the chips she wanted.

I tried to use it as a bribe.  I told Janey "They don't allow loud screaming at the CVS.  You need to take a deep breath and calm down if you want to get chips"  She tried.  She really tried, but there was just no calming down.  She was too far gone.  I drove into the CVS parking lot and sat there a minute, trying to decide what to do.  Janey would cause a scene.  There was no avoiding it.  I hate being in a scene, hate being the center of attention.  But I needed to get home.  I knew the chips would buy me 20 minutes of quiet driving, not fearing for my life and hers.  So I took the deep breath instead and took her into the store.

It was as much hell as I thought it would be.  Janey was screaming the unearthly scream the whole time.  To add a little more of a bizarre twist, she also occasionally screamed out a phrase I have no idea where she learned "Ashes to Ashes!  Dust to Dust!"  I haven't taken her to any funerals lately, and I can't imagine any of her kids' videos feature that exact phrase, but who knows?  It added just the little touch of seeming possessed that made the whole thing that much more fun.  Every eye on the crowded store was on us.

I decided somehow, through the screaming and the stares, to just pretend Janey and I were alone in the world, and to do whatever I could to get us through the store and keep her calm.  I held her hand, talked to her in a low voice saying things like "I know how scary it is to feel the way you do. Mama loves you.  You are being a good girl.  Let's get the chips.  Let's get in line.  I am right here with you"  I was far more patient and loving sounding than I felt right then, but I figured I could control my part of the show, and the gawkers didn't need to see a crazed mother too.  I was hoping against hope someone would take pity and let us go ahead of them in line, but no such luck.  The woman ahead of me seemed to go as slowly as she possibly could, while repeatedly glaring at me to let me know how much she was being disturbed.  When I finally got to the counter, the cashier asked for my CVS card, and I said as cheerily as I could "I have one, but I can't get it right now!"  Yeah---because if I started searching for it, my daughter would escape and run screaming around your store, lady.  I handed her cash and got out of there.

In the car, as I expected, Janey ate the chips and I made it home.  She had a few more crying spells, but overall, she's over it.

Now, did I do the right thing?  I don't know.  To an outsider, it might look like I was giving in to Janey.  But I don't think I was.  She was upset, but not really about the chips.  The chips were just a part of the routine that wasn't met, and a tool to calm her down.  I needed to get home safely, and that wasn't going to happen unless I did something, so I did.

I can understand why people stare at Janey when she is acting the way she does.  I can't really blame them.  But I wish they would just catch my eye and smile, or at least not be quite so open with the staring.  I would think they would realize that I don't enjoy going in the store and disturbing their evenings.  I'd rather, quite frankly, do almost anything else on earth.  But Janey is a human being, one who, despite her sometimes very tough behavior, is part of the world, the community.  Figuring out how to make that work is not easy sometimes.

Knock on Wood

Janey has been in a good mood for a week and a half now, knock on wood. It started when she went back to school after vacation, and it's been great. She's cried very little and has just seemed to enjoy life a lot. As I've said before, when she is happy, it all seems very manageable.

A friend asked me if she's been talking a lot since she's been in the happy mood. That was a good question, as that's sometimes the case, but not this time. I think often when she talks the most is when she's feeling a little manic. This is more of a calm happy. I do think this is when she learns the most, though. She is calm enough and receptive enough to be taking everything in, although she might not show what she's learned.

The last few rides home from school have been so nice. Two nights ago, Janey said "Do you want to go to the CVS chips store?" which of course means "I want to get chips at the CVS" She rarely talks to me at all on the way home, and I love it when she does. She also asks at the right time, before we are passed the store. She's always very aware of where we are in our drive, which is not the case with her older brother Freddy! I asked "Do you want Pringle chips or Dorito chips?" and she answered right away "Pringle Chips!". However, at the store she saw the Doritos first and changed her mind. I reminded her we don't eat the chips until we are in the car, and she was such a good waiting girl, even when we were in a long line with all kinds of people in front of us that seemed to be using ATMs to pay for the first time in their life. I just felt so proud of her behavior and happy to be having fun with her, getting her a treat.

Last night she thought she'd try again and asked again for a chips stop. I thought that was probably a bit much, so I suggested a stop for ice cream. She didn't answer right away, and I asked "Strawberry Ice Cream YES, or Strawberry Ice Cream NO?" That sometimes works, not often, but after about two minutes I heard her pipe up "Strawberry Ice Cream YES!" She was such a delight getting the ice cream, so excited and happy and well behaved. I had her tell the owner what she wanted, and she said "ice cream!" She ate the bowl completely.

So, among the days that are tough, there are good days. I love it when Janey and I can just have fun together. On days like that, I truly am not a bit bothered by her delays, or by her general autism. It's funny---before you have kids, there's the classic thing that you say "As long as they are healthy" which I think usually really means "as long as they are normal, as long as they are intelligent, as long as they aren't slow" And when you are given a child that isn't those things, you change. You see people getting worked up over their child having trouble with algebra, or not making some special team, or not being on track for a top college, and it just seems...well, silly. And I don't like to say things like that, as I do understand those feelings. But on the other hand, Janey makes me see that just a happy day getting a treat can be all you'd ever want being a parent to be.

I wish it didn't work

Janey has had some great days lately. She's been talking a lot, being adorable, happy, sweet. When she is cheerful, it all seems so much easier. I can feel hopeful---I can feel like the good kind of special needs parent, not the grouchy bad type.

So what does my title mean? Well, the difference in Janey's behavior is connected with us raising the dose of her medication a little. A week ago, we saw her psychiatrist and told him things had been getting increasing tough---more crying, less talking, more tantrums, more not sleeping, etc. He's very conservative about the medication, but he said she might have outgrown her dose and we could raise it a bit to try. We held out a few days, as the medication scares us, but finally gave in. Janey can't learn when she is crying all day, she can't learn when she hasn't slept, she can't enjoy life when whatever inner demons she has are tormenting her. So we gave in. And within a day, we saw the huge improvement.

I shouldn't really wish it didn't work. I'm GLAD it works. The medication doesn't MAKE her talk, or learn, or be happy. It somehow or other calms and quiets down whatever is inside her head that makes it so tough to be happy. It gets rid of "the banging noise" and "the clicking noise" that she once in a while talks about when she is screaming---the noises or voices or whatever they are that torment and scare and dominate her. And I am hugely grateful for that. But no-one on earth wants to give their 6 year old girl a medication that is basically called an anti-psychotic.

But it's great to see what I thing is the "real" Janey---the personality that she has when she isn't tormented. One the way to school yesterday, she did some great talking. An ambulance went by, and I remarked on it. About 5 minutes later, she said "I hear the ambulance!" That's a very rare kind of statement for her---something just commenting on what she's heard, not asking for anything. A bit after that, she said "The CVS!" We were passing the CVS store she loves, and again, just a comment! But then she made the connection and said "I want chips!" as on occasion I've been known to get her some Pringles there. I told her "First school, then CVS" which seems to be the way she best understands waiting for things---she doesn't seem to get terms like "after". Of course, I am a bad Mama and don't always "remember" to stop at the CVS on the way home unless she remembers, but hey---it's less junk food that way. Last weekend, another great talking moment. We were at a roast beef place, sitting by the window (and it's great in itself that she was able to go to a restaurant, even one that is semi-fast food such as this one) and she saw a bus pull up and let people on and off. She yelled out "I want to hop on the bus!" We haven't heard that before, especially the "hop" part! William was with us and of course was thrilled she was showing an interest in public transportation, his favorite thing!

And so it goes on---patching together the best life I can for Janey, doubting myself every inch of the way, but trying to always use as my guiding principle---what makes her able to most live in our world without frustration and sadness?