The Easter Bunny Hunt---A Story In Pictures

The quest begins.

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

Empty Rite-Aid bunny rack!

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

Picking out salami

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

Auxiliary Salami Area

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

No bunnies at the grocery store either!

Some interesting cakes

Salami choosing

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

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

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

Finally, bunnies!

Bunny time!

Assorted Janey Anecdotes

Sometimes the little stories and thoughts involving Janey that I have stored up don't come together into a whole that makes for a good blog entry.  That's been happening lately, so I thought I'd just put them together into an assortment of little tidbits!

#1.  The other day, we were visiting a friend of mine who is in the hospital.  As we waited by the elevator, a doctor walked by.  After he was out of sight, Janey said in a happy tone "A doctor!"  It was a kind of utterance I've rarely heard from her, just an observation, not a request.  I was surprised at that, and that she knew the man was a doctor based on the clues of his clothing and setting.

#2.  We went to the Savers thrift shop yesterday, my favorite shopping place.  While Tony looked around, I had Janey with me as I looked at sweaters.  She was excellent, as long as I kept up what I think of as my patter, a non-stop monologue on what I was doing, remarking on the clothes, asking for her opinions (which were not forthcoming) and generally just rambling.  A woman close to us kept looking at me in a way that seemed to say "Okay, that lady is kind of odd and I will just keep on eye on her" until I saw her looking at Janey and suddenly getting another look I'm very familiar with, the look that says "Oh, I see.  The daughter is not quite right"  I don't like that look at all, but I'm sure I've used it myself.  She followed it by a bright and fake toned "Oh, you are having fun looking at clothes with your mother, aren't you?"  I am not sure what I would have rather had her do.  I am being petty in my mind, but the whole thing bugged me.

#3.  Tomorrow is Janey's IEP meeting.  Since she is 14 now, she has the option of attending the meeting.  Her teacher is going to bring her to the end of it.  I am glad there is a push to include people of Janey's age and up in their own planning, but quite honestly, although it will be fun to have Janey there for a part of the meeting, I am not sure how much Janey will understand of what is happening.  It's one of those cases I run into a lot, where something is in theory the right thing to do but in practice often doesn't play out to help Janey.  But we'll see how it goes.

#4.  I put in the high school choice form.  We put first on the list the school I wrote about that I most liked.  You had to put at least 3 schools down.  I put 6, and listed last the school very close to our house.  I don't know if it was really my last choice, but I don't want it assigned to us just because it's close.  I hope Janey gets into our first choice.  I am telling myself I'm ready for a fight if she doesn't, but I hate a fight.  So I'm just going to keep hoping push doesn't come to shove.

#5.  The other day, it was very, very rainy and windy when it was time for Janey's bus to come home, and the bus tracker app showed that the bus had gone to the bus yard without dropping her off.  We were pretty sure they were really using a sub bus, and that she was fine, but she was about 15 minutes late coming home.  And Tony and I both were starting to feel panic, even though it was not a panic situation.  There is just something unspeakably scary about the thought of not knowing exactly where Janey is.

#6.  Janey loves to watch Tony play video pinball.  His favorite game is one called Funhouse, and the game often speaks the lines "Stop playing with the clock!  You are making me very unhappy!".  Janey's teacher emailed us last week that Janey kept saying those exact lines at school.  The teacher didn't know where they were from.  Tony was very, very happy to think of Janey quoting the game!

#7.  Tony was NOT very happy when Janey started singing along at the Savers to Billy Joel's "Piano Man"  He is not a Billy Joel fan.  I loved it, though.  The background music in stores is something Janey always notices. 

#8.  The pre-IEP reports from Janey's school said she will give her name and address and phone number most of the time when asked.  I know she can do this, but I've rarely heard it.  I was determined to, and kept asking Janey for her address, over and over.  She obviously didn't want to tell me, but I didn't give up for quite a while, until she got upset.  I don't know why I do this.  Partly I guess it's because she talks so little at home, less each year, I'd say.  I want to hear what she can say.  I am not satisfied just knowing she CAN say things.  I want to hear them myself.  I need to stop with that.

#9.  Janey's most common phrase at home is, as it has been for many years "Cuddle on Mama's bed?", meaning she wants Mama to cuddle on Janey's bed.  Cuddling isn't really cuddling, either.  It's laying next to each other as Janey stares into my eyes, looking at me as if I hold some secret she hopes she can figure out if she looks long enough.  She will do this, if I will stay still and let her, for hours. In the past, she usually got bored of me and went for her ipad after a minute or two, but now, she often doesn't.  It's almost always me who loses the staring contest, who gets restless.  I feel guilty about that.  I wish I knew what she was thinking, why the looking at each other is so important to her.  Eye contact certainly isn't an issue for her.

#10.  Life with Janey is absolutely calmer than it was in the past, especially during the tough years from 5 to about 11.  But sometimes, it also feels like there is less of Janey's personality showing through, that she is retreating into herself more, or at least making her needs less known.  As I said, she talks less, but also watches less TV, asks for less car rides, less food, less everything.  Sometimes I despair a bit over this, other times, I try to tell myself she is just a teenager, more self-contained than she was.  I think about this a lot.

#11.  I am glad there seems to be a growing awareness of the need to better understand those with severe autism, those who cannot always self-advocate, those who will not live alone or support themselves, but those who are just as deserving of a voice.  If we are not speaking out for our loved ones, if we are silenced in speaking for them, if we are made to feel that if we don't find a way to give them their own voice, we are not entitled to advocate for them...well, it's a complicated issue, with much caring and love for those with autism in all the differing ideas and voices, but I will keep forever doing both---working to give Janey her own voice while speaking out as best I can for her when she is not speaking for herself.

Screaming, Shopping and Sleeping (or not)

On Saturday morning when Janey woke up, Tony was working on our state tax returns. Therefore, he wasn't available for the regular Saturday morning routine.  We hadn't really been aware of how much Janey counted on that routine, but she let us know, that's for sure.

Usually, on Saturday morning, Tony makes Janey bacon.  Then he has his coffee and she "steals" it---a game they've played for years.  He says "I hope Janey doesn't steal my coffee!" and then sets it down, with a little black stirrer straw in it, and she does indeed grab it and steals it.  Then he cries, a huge exaggerated cry.  This goes on for a long time.  We've had her her own coffee (hey, she's twelve, that's pretty late for an Italian to start on a lifelong coffee addiction), but she prefers the stealing method.  She and Tony can make a full morning of coffee, bacon, and then cooking whatever else she asks for---"soup" (which is boiled greens), toast, home fries, whatever.

This Saturday, I tried to hold Janey off until Tony could finish.  I wasn't even able to get started before the screaming started.  I was determined to give Tony the time he needed---he was on a roll.  It was a hellish hour or so.  The screaming...wow.  I write so often about Janey's screaming here, but unless you have heard it, I don't think anyone can quite picture it.  It's truly ear-piercing.  I do think both Tony and I have lost some of our hearing from it. And despite many, many different methods I've tried to reduce it, nothing works consistently.  It's Janey way of saying that the situation is just plain unacceptable, and it really doesn't stop until the situation improves in her eyes.  I finally got through the time by her taking an extended shower---she screamed right up to getting in and screamed as soon as she was out.  Once Tony was done, they did their routine, and Janey was quite happy.  It's times like that that result in us usually just doing what Janey needs done.  We are all happier that way.  But we can't always, always do that.

On Sunday afternoon, after a decent enough weekend when the screaming was past, we took Janey out shopping.  That is something we almost never do, except for quick grocery shops.  She has learned to do very well in the grocery store, as long as she knows she'll soon be eating the food she picks out.  But this was a shop to A.C. Moore (a craft type store) and Five Below (a store where everything costs five dollars or below).  We weren't shopping for any real reason---we just both had the urge to browse around.  And lo and behold, it went quite well!

In the ACMoore, I walked around with Janey for a while so Tony could look around, and it was actually fun---not something I've never really found when shopping with Janey much.  She was interested in a lot of things in the store---some decorative feathers, some plastic models of animals, a wooden heart, a letter "J" to decorate----quite a few things.  I asked her a couple times if she wanted to buy things, but I don't think that's a concept she truly gets except in the grocery store.  It makes her cheap to shop with!  She sees the store as a museum of sorts---a place to look at and sometimes touch things, but not take them home.

While we walked around, I thought to myself "You know, I don't think people are staring like they usually do"  So I started taking note, and yes, they still were staring.  The thing is---I don't notice it much any more.  That's a huge change.  I used to be very bothered by staring, and now, I'm so used to it I don't even see it.  I think that goes along with a general shift in our thinking about Janey.  I'm comfortable enough with her just being who she is that I don't really much care most of the time if other people find her stare-worthy.  If I do notice them, I think I often assume (without really thinking, just letting my mind wander about) that they are thinking she is cool, because that is how I am seeing her.  Or I think "it's great she is educating them about the existence of people like her, autistic older kids and adults" (because she looks fairly close to an adult now)  Whatever it is, I'm glad it happened.  We all live in a world partly made up of our own perceptions, and I like living in the one that doesn't notice or mind the staring.

Janey wasn't too interested in the Five Below, but I bought a few things there, including some ChocoTreasures eggs.  I love Kinder Eggs, chocolate eggs with toys inside, but they are illegal in the US, so I'm happy to have discovered there are similar eggs that are now legal.  I bought a few, ad in the car on the way home I did something stupid---I opened one of them.  It was stupid because Janey and chocolate, after noon, don't mix.  She saw the chocolate right away and asked for it, and instead of saying no, I gave her a little, little piece---about the size of my thumbnail.

And then we re-learned a lesson we should have learned long ago----if Janey has chocolate after noon, she doesn't sleep.  I think it's so hard for me to grasp because it just seems not to make sense.  How could that little an amount of chocolate keep her up?  I think it's especially dark chocolate, which this was.  Usually, Janey is asleep by about seven.  Last night, although she was cheery and happy and willing to stay in her bed, she didn't get to sleep until about 11:30.  Which meant, of course, one of us had to be up too.  Tony has to work in the morning, I don't, and it was also me who gave her the chocolate, so I did most of the duty.  Janey watched her iPad and sang to herself and asked me for cheese and generally just did her thing while I lay next to her, fighting sleep until she finally drifted off.

In thinking about the weekend, a fairly normal weekend, I am struck by something.  So much of how Janey does depends on what we do---whether we follow routines, whether we let starers bother us, whether we stick to rules we've made ourselves about chocolate.  We are all happier if we make Janey's life predictable, relaxed and sleep-at-night promoting.  It's a feedback loop---the more we can do that, the happier she is, and the easier it is to enjoy her and keep her happy.  We can't always get it right, because we are human, and we aren't completely in control of all aspects of life, but we can do our best, and when we do that, instead of expecting Janey to be something she isn't, life with our girl is better for all of us.

Thoughts on vacation and school

Janey's April vacation was a good one.  We didn't have a lot planned, and most of the days were just Janey and me hanging out, watching TV or reading or playing outside.  We had two nice visits with my friend Maryellen, who Janey adores, and one outing for shopping (clothes, which Janey tolerated for FIFTEEN MINUTES!) and ice cream, but mostly we just did not much. 

Janey doing one of her favorite things!

By the end of the vacation week, I noticed something I often notice after times when Janey and I are at home a lot together.  Her talking increased a good deal.  She had been in a low ebb for talking, but by weeks end, I was hearing longer phrases and new words.  At one point, outside, I said "Look at my flowers, Janey!" and she said "The daffodils!", a word I had no idea she knew.  She was stringing together thoughts, like "want to go on the bed and snuggle under covers?" It just felt like we were communicating better than we had in a long while.

Janey's outbursts were short during vacation, and pretty easily dealt with.  I read a book about adopted children with attachment disorders.  That isn't what Janey has, as she isn't adopted and I don't think she has an attachment problems, but the strategies for dealing with that problem interested me, and weren't too different than I do anyway.  Mostly, it involves keeping calm when the child is not calm, and not ever using things like time out---instead, giving more attention when behavior is tough.  I've been trying that, not as something I'm going to always do, but trying it, and it is working well.  When Janey screams and bites herself, I say "I think you need a snuggle time with Mama" and often, very quickly, Janey is happy and smiling.  With her outbursts, it's a matter of whatever works, and it was nice to have that working for now.

I was interested to see how Janey did with school starting again.  I very much like Janey's teachers and therapists and everyone I've met in the autism program at her school.  But sometimes, I'm starting to wonder if just the whole structure of school is tough on Janey.  School is not really designed for someone like her.  I don't think she enjoys ABA, or any kinds of art type activities, or almost any structured learning.  She likes music, and being outdoors, and taking walks.  They do those things at school as much as they can, but she is not the only kid in her class, and they are charged with teaching her, not just keeping her happy.  

This morning, Janey was not at all eager to go to school.  That is new for her.  She almost always like going places, almost any place, and she's always been eager to get on the bus.  Today, she asked for a car ride right as she got up, and was very upset we told her it was a school day.  She seemed to resign herself after a bit, but as I watched her head to the bus, she looked grim, stressed.

Sometimes, that mean voice in my head which is my own judgemental side says "if you were a GOOD mother, you'd homeschool her!"  Well, that is not going to happen.  Janey needs school, and I need the respite that school provides.  Even with a good vacation, I was extremely ready for Monday to come and school to start again, and I feel quite sure Janey would be very sick of being home with me after not too long at all.  But I wonder what education for Janey would look like in an ideal world.  I am so lucky in that I honestly have never had a teacher for Janey I didn't love, and who I didn't feel loved Janey.  That's not the issue.  It's the whole structure of school.  School is set up for learning, not for life skills or for learning to do things that will provide lifetime happiness.  The goal at Janey's school, which has two parts, really, a "regular" part and an autism part, is stated as "We believe every student will attend college"  I do think they realize this is not a realistic goal for Janey, but my point is that the "normal" school model seems to be more modified than replaced when designing programs for kids like Janey, and that just doesn't always make sense.  This is a systemic problem, not a problem with Janey's specific school.

I'm doing a very lot of thinking lately about school and Janey, and about how I can be prepare her for the future.  I want to honor who she really is in this preparation, not a mold that doesn't fit her.  I hope I can figure out a way to do that which will work for her and for us.

Bread and Salami

I read a book recently called "My Baby Rides the Short Bus".  It was a collection of essays about raising children with various special needs, although most of the kids had autism.  It triggered a lot of thinking for me, and went along with something that had been brewing in my head.

Going back a bit...In general, Janey has been much happier this week.  The medication seems to be helping, and I hope some of the new things I'm trying are helping too, like the positive reinforcement to the extreme.  Whatever it is, I am VERY happy about it.  But realistic, too.  She often has honeymoon periods on a new medication, or a new dose, or a new classroom, or anything new.  Eventually, her moods cycle around again.  But I have to enjoy right now while I can.

I wrote earlier about Tony trying to take Janey to the store and her freaking out and screaming and him having to leave with her.  When that happened, he was buying her some salami, her favorite food right now.  For the next few days, she asked for salami over and over and over, and I told her each time "We don't have any salami.  Remember at the store when you screamed?  We had to leave before we got salami.  Next time, when you don't scream, we will get salami"

A few days ago, Janey and I went to get William from work at Whole Foods.  We left a bit early, and I decided to try a quick shop with her.  She was excited.  First, she went to the area where the VERY expensive salami is, the kind I think they must fly over on its own plane from Italy every morning to justify the cost.  Luckily, that isn't the kind she likes best now.  We found the moderately extremely expensive salami aisle and got a few packs.  They are organic, uncured, no nitrates, that kind of stuff, but she just likes them because they really do taste great.  Then, we went to look for the bread she likes, a very long thin loaf with sesame seeds that is also very, very expensive (they don't call it Whole Paycheck for nothing)

When Janey spotted the bread, she dashed over to get it.  The look on her face was amazing.  It was pure joy.  She grabbed a loaf and put it in the carriage, and looked up at me with that look---the look that seems to say "Life is absolutely perfect!  I could not possibly be happier!"

Later, reflecting on that moment, I had a thought I've had a few times before.  I thought about how once in a while, Janey's autism gives us moments that we would not get with a typical kid, moments that are wonderful.  And then, because my default emotion is always guilt, I told myself "But what cost to her do those moments come at?  Should I really feel happy about moments like that when they come at the cost of so much to her?  Should I be overwhelmed with happiness that she can have pure joy over getting the bread she loves?"

And I decided---yes, I can feel happy about those moments.  They are part of Janey.  It isn't fake joy she feels.  It's real joy.  And her ability to feel joy like that is something that can only be a good thing.  The fact she isn't thinking at that moment the things most 10 year olds would be thinking,  thinking about how her mother is embarrassing her, or about what other treats she might get, or about all the many things I would have been thinking at age 10-- that doesn't matter. What matters is she has a chance to feel the moments of extreme happiness in life we all deserve.  And I rejoice in seeing her feel that happiness.

This comes back to the book I read in that I noticed that many of the most heartbreaking essays there were written by people whose kids are right at the edge of "typical", "normal" They were about kids desperate to fit in but never quite able to, kids struggling to do work at school they never quite can do, or struggling to make friends or socialize.  They were about children feeling left out and sad and feeling like they were not making the grade.

Of course, I wish so much it's hard to express that Janey was going to have a life closer to the typical life.  I wish she could learn to read, that she could get married some day, that she could have friends she could hang out with, that she could have all the things in life so many of us take for granted.  But she can't.  However, she doesn't seem to wish those things.  She isn't really at the point where she realizes what she doesn't have or won't have.  I don't know if she ever will.  Not that life balances things out---as we all learn as kids, life isn't fair.  But I am glad, in a way, she will be spared the heartbreak some of the children in the book felt.  And I am glad she can feel joy at times.  Especially after her terrifying health setback, I am so glad I was able to see that amazing smile and joy over a loaf of bread.  I will unabashedly, unapologetically treasure that moment.

The Heights and the Depths

Yesterday was a great example of one of the most exhausting and mysterious things about how autism shows itself in Janey.  It was a day that was a mix of her worst and best, see-sawing back and forth all day until we were left exhausted, unsure whether to laugh or cry, despair or rejoice.

Let's do a run-down.  Janey woke up in a bad mood.  She woke up screaming and screaming, for no reason we could figure.  It took about an hour to calm her down, during which she kept attempting to bite her arm.  Once she finally relaxed, we had a good hour of hanging out, eating breakfast and watching some shows.  Then we all headed out to my favorite thrift store and various other errands.  Janey got into a mood in the car for a while, crying and crying.  We were pretty much figuring the day was going to be a disaster.  She wasn't happy at the thrift store, so Tony and Freddy took her for a walk while I shopped.  She got cheerful enough during this walk that we decided to go to a hot dog place near the store.  It's slow fast food---you order, and it takes a while to get brought to you.  As it was early in their day, this time it took quite a while, maybe 20 minutes, and Janey was a joy.  She sat there patiently and happily, listening to the radio, looking out the window, as good as you could hope anyone would be.  She didn't eat much, but we all had a very nice meal.  Then we went to Trader Joe's and a computer store near there.  Janey did not care for the computer store Tony took her in while I grocery shopped.  She didn't care for it so much she freaked out and tried to bite Tony on the face.  Freddy took her out and brought her to the crowded Trader Joe's with me.  The crowds bothered her not a bit, and she walked around with him fairly happily, looking for her "ham", the fancy salami she likes there.  We ate it on the way home, a good drive.  Once home, she again had a lot of fits, crying, tossing things around, furious at us.  I finally toward evening in desperation gave her my iPod to hold and put it on Bluetooth with some speakers I have.  She caught on right away that she could wander the house, changing music as she pleased, and for probably 2 hours, she was happier than happy.  She played some of her favorite songs over and over, including maybe 10 go-throughs of a current favorite, Funkytown.  She and Freddy danced, Janey doing the instinctive right moves as she so often does.  She looked like she was in a disco.  Later I played her the chorus from The Messiah.  That was the highlight of the day or most any day.  She stopped moving and stood listening with a look on her face that was beyond words, a quiet joy and amazement.  She's heard the piece before, but not for a while, and it was simply one of the best moments I've ever had to watch her experience it.  I don't think anyone could love music more than Janey, whether they are the most experienced and knowledgable musician on earth.  After the music time, Janey fussed her way to sleep, demanding this and then that and finally falling asleep very, very late for her, about 11 pm.

So we go in one day from scenes like a lunging biting attempt in a store, a prolonged screaming and crying fit in the car, several tantrums, but also a near perfect meal out and a glorious time with music.  How is it all explained?  What drives Janey?  What happens?  I could think we shouldn't have taken her to as many places as we did, but it wasn't that straightforward---she was better for the ride home than the ride out.  I could say we should have insisted on an earlier bedtime, but it's the weekend, she almost never stays up late, and the hours with the music were among the best we've ever had with her.  We could say we should have given the day more of a routine, but some of the toughest parts were the parts where everything was calm.  When I think I've got some aspect of Janey's moods figured out, she proves me wrong.  I don't understand her.  I don't know if I ever will.  She is intense, driven, angry, angelic, mysterious, sad, joyful---she is not an easy girl to understand.  Tony and I have joked about our three very different but all unusual kids, wishing that we had had just one boring child.  That's not the path we've been given  We are doing the best we can, Janey.  I hope someday, if you can read this, you'll forgive us for the times we were overwhelmed by you.  You are an amazing girl.  I hope we can help you find your way.

Everything magnified by ten

I'm trying to think of a way to describe Janey's behavior this week, and the title of this post is what I came up with.  She's not doing anything she hasn't before, but everything is done in a bigger way---louder screaming, more violent reactions to being told no, more hysterical laughter, bigger acts of destroying things around the house, more night waking----it's like she just decided to kick it all up a notch.  It's been pretty tough, to put it mildly.

It's hard because this is probably the most unstructured week of our year.  No summer school, regular school doesn't start until September 4th (and believe me, that date is circled in red on my calendar), Tony is at work, we are just hanging out.  And I had planned to try very hard to take Janey places, to keep her occupied, but when she is acting the way she has been, I can't do it alone.  Literally.  I can't handle it alone when she runs away from me, when she decides she wants her clothes off, when she starts screaming and lunging to bite me, when she scratches herself until she draws blood---it's not a one person job.  Even taking her in the back yard is getting tougher, as she suddenly gets unhappy there and freaks out, and does the clothes off routine, which she knows means we have to go inside.  I'm starting to wonder if she's using it as a way to tell me she wants to go inside, instead of just saying that, which she can say easily, but what am I supposed to do if she is?  Let her stay outside without clothes?  No.

Yesterday we did get out, by taking William with us.  He is leaving for college on Sunday, and we are piecing together shopping for that.  Janey did fairly well with him there, but that was by means of him whisking her away the minute she got crazy, for escalator rides or quick walks.  And by means of literally grabbing the first 3 towels I saw to buy William.  We then went to ToysRUs, which she enjoys looking around at.  However, she quickly found a toy she took an immense liking to, a hugely overpriced electronic counting Elmo toy.  It has flashing lights and an annoying song---what else could you want?  She has some birthday money, and I had hoped she'd like something else, but she now knows what the checkout counter is for, and pulled me over to it so we could make the gadget ours.  Time used up---about 10 minutes---leaving many hours left in the day to fill.

I made some calls to try to get something started to help all this.  I got a referral done by my pediatrician to get Janey seen at Boston Medical Center, which I am told has a good autism program.  We have an appointment in October for just Tony and me, to do intake.  I also made a sooner appointment for myself with a new rheumatologist, to try to get some health answers so I am better able to handle things.  Tony is going to call Janey's psychiatrist today, to see if we can adjust her medication.  We are doing what we can, but there is honestly not that much that can be done.  There are times when her behavior is such that one's instinct would be to take her to the emergency room.  If it were something physical wrong with her, and she was showing symptoms of the severity of the ones she is showing, I bet I'd get very quick and wonderful care.  But I've read enough accounts of people in desperation taking their melting down autistic kids to the ER to know it's a waste of time.  Which is, of course, a crying shame.

My theory as to why things have gotten worse, besides the unstructured time---Janey is getting closer to puberty, and I know how that affects any girl.  She is rapidly getting stronger, and bigger, and she is frustrated, I am sure, with her limited speech and independence.  During calmer times this summer, she was showing me in many ways she wants a little more freedom from me---the tiny bits she can have, like sometimes walking without holding hands, like being in a different room---she actually said one day "I want privacy"---a concept I was surprised she understood.  But if I let her even go into the bathroom by herself, she wrecks havoc---towels in the toilet, water overflowed, all the toothpaste squeezed out---even as she is getting better at using the toilet on her own.  How do I figure this out?  What can I do?

I think I'm scared of a point arriving when Janey truly starts hurting me.  That is very hard to say.  But she is more often lunging at me with her mouth open, wanting to bite me.  The other day, angry I didn't change her Netflix show quickly enough, she smashed the remote on my wrist, and I feared for a minute it was broken.  What do I do about this?

Lots of questions here, which are of course mostly rhetorical.  There aren't answers.  All I can do is hope that Janey gets through this phase and back to the one she was in previously, when she was a delight and I felt a lot of hope.  I need that hope.

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.

Starting the School Year

Janey is off to a good start to the school year.  That makes me happy, although I do always keep in mind that the start of almost every school year has been good for Janey.  She loves being in school.  I think she hates the summer and the lack of structure almost as much as I do.  But that being said, every year it is a wonderful relief that her love of school still holds, and a tribute to the teachers and staff and students that make school enjoyable for her.

This year she is going to afterschool every day.  That was a hard decision for me, but I'm not sure why.  I kept thinking a GOOD mother would not put her child in afterschool unless she absolutely had to, or if she did, it wouldn't be every day.  However, what I wasn't thinking about is that a good mother also takes into consideration what makes her child happy.  Janey did not like it last year having an inconsistent afterschool schedule, and she never liked the 2 hours before Tony got home on the days she had no afterschool.  When I pick her up this year, she is always extremely happy.  The principal helped me get over my final worries, by saying "Look how happy she is!  This is where she should be after school, if she's that happy!" That helped a lot.  It's all part of the process, realizing that Janey is not my other kids.  She needs more people, more support, more activities than I can always realistically provide at home, with the other duties I have.  So she is happy, and I am happy, getting more work done than usual.

I'm noticing the one time she does fall apart now is right before bedtime.  When she gets tired, like almost everyone, she has trouble holding it together.  I am starting, when that fussy time hits, just quitting all else and lying down with her, and singing and talking and just spending some alone time with her.  Often, she drifts off after a while of that, but if she doesn't, she's at least calmer.

The other day, after a grocery store trip, a Beatles song kept running through my head, the lyrics that say "I have to admit it's getting better,a little better all the time"  It isn't always, but that trip made me see how far she has come.  Once we got in the store, I barely held her hand.  She stayed with me, and the few times she got a little further than I liked, she came right back when I said to.  She picked out a few things she wanted from the shelves (mainly BBQ chips in 2 different sizes) and she hummed to herself and was very cheerful.  When we got to the car, she wanted her chips, but I told her they were for after school (this was before school) and she accepted what I said without a tantrum.  I didn't feel drained or out of it after the trip.  I am sure people looked at Janey, and wondered what was up with her, but I really didn't notice or care.  It's not just her who is progressing, it's me, too.

And so a cheery post for once.  The fall is my favorite time.  It feels like a return to regular life after the summer.  It always gives me hope, as the spring seems to give other people hope.  Janey is growing up, little by little.

The shopping trip that wasn't

Today, Tony took Janey with him to got to Trader Joe's, with William and my brother-in-law. We all love Trader Joe's, as has Janey in the past. William was excited to get some of his favorite low priced frozen foods, Tony was excited to get the great store brand Swiss Cheese they have, and Joe (my brother-in-law) was excited to get some of their Sicilian wine. And all was jolly until they were about 10 minutes from the store. Janey started saying she wanted to go home, but it was a low level grumble. Then, when they got there and got out, she started The Crying. The crying that has, we now realize, reached a new level of intensity the last few days. Maybe it's an 8 year old thing. She screamed and crying so loudly, so intensely, that Tony experienced my Sears disaster in parking lot form. People staring, EVERYONE in earshot staring. It's that kind of cry. And it was impossible for them to go in the store. Tony offered to stay out with Janey, but Joe was too shaken and William doesn't have his own debit card to pay. And so they left.

William was very, very, very angry about this. I can't totally blame him. It's not the first time his life has been changed by Janey, of course, but lately, it's not just hard to do things if she acts that way, it's impossible. The probably 5 minutes total I was in the Sears were such hell that a whole shopping trip like that would be whatever is way beyond hell. For us, and for everyone else in the store. Janey might very well hurt herself, as she sometimes starts banging her head or biting herself when the fury and sadness completely overcomes her. And so we can't power through this.

And now she is home, fairly happy. And we are at a bit of a loss. One of the main ways I got a little respite was Tony taking Janey grocery shopping. She likes, or liked, to grocery shop. If this new behavior lasts, I can see us much more confined to home. And of course I worry---if she does this at school, I can't imagine how it will work out. I feel worried sometimes we are headed for a new stage of Janey. Or maybe I shouldn't say worried. Often, very tough behavior with her comes before a step ahead, and indeed, she has been saying some good phrases lately, and the toilet training progress is, knock on wood, great. I have no answers, really.

Shopping Hell

Janey has had a tough last few days, including her birthday. There's been periods of time each of the days where she has been crying non-stop, like in the bad old days. I mean completely non-stop hysterical crying, for hours and hours and hours. There are have been periods each day where she was fairly happy, but the crying has been big parts of the days, and it's been awful. She doesn't like to feel that way, and I know she doesn't know why she is crying. She does pathetically sad things to try to comfort herself, like telling herself to take a deep breath, or humming lullabies to herself. It breaks my heart. Today Tony took William to visit colleges, and I decided to do absolutely nothing but try to keep Janey happy and active, and to do whatever she wanted, sort of a second birthday that was just hers (she shares her real one with Freddy). It worked pretty much until 3pm, which has become the Hour of Evil where she starts to lose it every day. I took her to the splash park in the morning, to McDonalds for lunch, we snuggled a lot, I played with her, watched Yo Gabba Gabba with her a lot---and I was hoping it would all break the crying trend. I took her at 3 to Sears to ride the escalator there, the closest one to us. She had been asking and asking for that. Something about the store set her off badly. At the top of the escalator, she started screaming, crying so loudly that literally the whole big store was looking at us. I grabbed a dress I had been wanting to get her, on a huge sale, and ran to the register. Dumb move. As we waited less than 2 minutes for a cashier (you get quick service with a screamer, they opened a new register), the woman behind me in line felt the need to tell me that Janey needed to go home, and then started loudly saying "SHHHH" to her. I felt like punching her, or at least explaining to her we had been in the store literally 3 minutes at that point. But concentrated on just getting out. Then the cashier felt the need to roll her eyes to another cashier and sigh loudly as she waited on us. At that point, I lost it. I am not a yeller. I do anything to avoid seeming rude or being confrontational. But I couldn't stop myself. When I am REALLY upset, something takes over. I said in a very loud voice (maybe yelling) to the cashier "She is autistic. I am shopping as quickly as humanly possible. She needs school clothes just like anyone else, and I do not have any babysitters. Therefore, I must bring her with me. I'm sorry she is bothering you" The cashier, taken aback I am sure, said nothing but a sarcastic "Have a nice day!" as we left, with the eyes of every person in the store on us. If you know me in person, you know this was my nightmare. Literally, one of the worst moments of my life. And you know that when I got to the car, I started doubting myself. Why did I take Janey to the store? Why did I try to buy anything? And then, still mad, I started answering myself. What else am I supposed to do? What I said to the lady was true. Should I just keep Janey at home at all times, to avoid bothering anyone? Isn't that what people used to want people with kids in wheelchairs or kids with Down Syndrome to do? Why doesn't Janey have a right to be in public? Of course her crying is tough. But you would think that people would realize I am doing everything I can to minimize their exposure to it. That sometimes, I have to try anything, and I thought the escalator shopping might work. That there are many kinds of people in this world, and although Janey is loud when she is crying, she isn't a spoiled brat or a mean kid. She is autistic.

Well....that was a long rant. Obviously I'm tired and upset. I know these weeks without school are tough for Janey as well as me. In fact, the day before her birthday, when I asked her to guess what the next day was, trying to hype her up, she said "A school day?" very hopefully. So we will make it through, someone. But I won't forget today anytime soon.