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!

What Community Means

What does it mean to be part of the community?

I got a list of summer camps today.  There were hundreds listed.  Janey would be welcomed at none of them.

When searching for after school activities in this area, a big urban area, there are almost none that would accept Janey.  One great exception, which is not close enough to home for us to utilize it, is the Boys and Girls Club.  I wish the one with the fantastic sounding programs was not about an hour's drive from us in afternoon or evening traffic.

A younger Janey and her brother William, in front of our house

The city is full of plays, stores, concerts, museums, restaurants, movies----almost none of which I could take Janey to.

There are lots of wide open spaces around here.  Might be great for Janey---if not for the dogs off leash that run up to her, with well meaning owners saying "Oh, he won't hurt her!  He loves kids!".  Yeah, but Janey is terrified of your dogs, and that makes her unable to use yet another public place.

So, sometimes when I think about including Janey in the community, I get discouraged.  Or I laugh a bitter laugh.

This would be much harder to take if it were not for the fact that in our own little neighborhood, we have found community.

Our neighbors on both sides are wonderful people, people that delight in Janey.  When Janey screams outside, or laughs manically, or just is her own unique self, it means the world to me that I know she is accepted and understood by those living closest to us.

Anyone who has read this blog knows about Janey's love for the "ice cream store", a store that is currently a 7-11, although it's changed names a lot.  We go there almost every day.  She is always welcomed by the staff, and increasingly, by the regular customers.  I can't tell you how many little kindnesses she has been shown there.

The closest few grocery stores know Janey well, and go out of their way to make our shopping with her not only possible, but fun.  One of the workers at the local Shaw's Supermarket has a grandson with autism, and has actually given Janey presents and always gives her a hug.

Janey's new bus aide lives in our neighborhood.  She walks over every morning to ride the bus with Janey, and her sweet, kind nature makes our mornings.

We have a little bubble here, a small world where Janey is truly included in the community.  We have often noticed that she is more accepted here even by people who don't know her than she is in many places.  Our neighborhood is working class.  It's never been gentrified, and probably never will be.  It's not a fancy place.  And perhaps that's part of the reason it's accepting.  People here are not necessarily living the American Dream, defined strictly.  There seems to be more room in their worldview for those who might not be following the script of "good schools, good college, good job, nice house, good vacations, comfortable retirement".

So what does community mean?  It means a place where you are included, where you are accepted and valued and allowed to be part of the action.  We might not have a community in the sense of formal things like camps or lessons or culture, but our neighborhood has made Janey a community member, and that means so very much to us.

I wish the whole world was open to Janey.  In an ideal world, it would be.  But for now, it's good to have our own little corner of reality where Janey is part of the community.

"Want to go away?"

Janey is 13, a teenager. Most of the time, her age doesn't make a huge difference.  She doesn't operate in most ways like a teenager, not in terms of what kind of help she needs, what kind of interests she has, what she learns in school or does outside school.  But there are parts of being a teenager that come through anyway, and it's quite something to see.

My teenager

The big one?  That she doesn't always want me around.  That shocked me when it happened.  For so many years, it wasn't just that I had to be near Janey for safety, but that she wanted me near her.  I couldn't really picture her wanting it otherwise.  It wasn't that she was particularly clingy, but just that she didn't seem to have a concept of me as someone separate from her.  I helped her do what she wanted to do.  I was just sort of part of the scenery.  But now...

This week is school vacation here.  Yesterday, we didn't have much to do.  We went to the store in the morning, we did a little time outside as it was nice out, but mainly, Janey wanted to watch videos.  And she wanted to watch them without me in the room.  The phrase I heard the most often yesterday was "Want to go away?"  Slight variations at times---"Want to go in that room?" or the non-verbal push out of the room.  I got the message.  She didn't want me there cramping her style.

It's hard for Janey, I am sure, as she isn't usually quite able to put on the shows she wants herself.  I've tried very hard to teach her to use the Amazon Fire TV remote.  That is where most of her shows are, in their interface, which is a fairly complex mix of various streaming services and also shows we have purchased for her to watch on demand.  I think Janey could learn it, though.  She uses the iPad with such ease it's amazing.  She knows how to move around programs and minimize them and start thing with gestures that I don't know at all.  But we aren't quite there yet with the TV.  So Janey needs to ask me constantly to put on the shows she wants.  We use an improvised sign language to pick episodes---I scroll and she points in the direction she wants me to scroll, and then points to herself when the episode she wants comes up.  There are pictures with episodes, but I do think there's a little reading going on too.  So even though Janey wants to be alone, she needs to come get me often to put shows on, as she likes to change shows constantly.

Yesterday she tried hard to be independent by watching VHS tapes.  She knows how to put those in and take them out, and she is remarkable at finding the one she wants from the huge box we have.  We've long ago lost all the covers, but she can tell which is which, from symbols or fonts or sometimes, it has to be, just plain reading.  However, she has not grasped rewinding.  She hates rewinding.  Most of the tapes are at the ends, because it's only if she REALLY wants a show she will tolerate me rewinding the tape.  Usually, after about 10 seconds, she stops me and hopes somehow the rewinding has happened extra fast.  But even with those challenges, I could see how happy she was puttering around finding tapes and putting them in.

Of course, even when Janey tells me to go away, I can't go far.  She needs me often to come back, and she really can't be left alone.  I go into the next room, and keep a sharp ear open.  I jump up if I sense there's anything I need to see---food being strewn around, a need for toileting help, anything like that.  But I'm out of direct sight, and that makes Janey very happy.

In some ways, it would be easier if Janey was not developing the typical teenage need for parents to not always be in her face.  The problem is that I can't see a future where she can have much independence except as we do it now---in the next room.  There are little, little things we can do.  We hold her hand less now---she is not a runner and she stays close to us, so that's possible.  In stores, we keep her in close sight but do sometimes let her walk away from us down an aisle to get what she wants---something she loves to do.  As long as we can see her, it's okay.  And she goes to school, of course---and she is horrified if I mention something her teacher told me happened at school.  She likes it to be her own world.

How do I respect Janey's need to grow up, to be her own person?  How does that work when it's just not ever going to be safe for her to really spread her wings?  I hope we can find a way to sometimes do what she so firmly asks us for---"Want to go away?"

Will she enjoy it? Will it benefit her?

Yesterday, on Halloween, I found myself desperately wanting to take Janey trick-or-treating.  I loved Halloween as a kid.  It was a day where everything was turned on its side, where you could go to people's houses and knock and get candy.  I loved the whole process, especially coming home with a big bag of candy and sorting it out and looking it over.  When the boys were younger, I adored taking them out on Halloween.  I read a few days ago about a local college having something called "truck or treat", where a lot of cars park and you can go from car to car trick-or-treating, and I made plans in my head to take Janey.

Yours truly, with my sister and father, on a long ago Halloween

However, we didn't go.  Janey is a very early to bed girl, and she was very tired by the time it was dark.  She was also very engaged in watching "Mickey Mouse Clubhouse", as we recently got new channels on the TV.  I struggled with myself---should I push for it?  Should I take her?

When trying to decide, I used a few questions that I've recently started to apply when deciding what activities to do with Janey.  Will she enjoy it?  Will it benefit her?

Well, she might enjoy trick-or-treating a little, but at that particular time, no.  She really doesn't get the point of it, she was tired, and when I asked her (probably over and over) she showed no interest.  She's very capable to letting us know when she wants to do something, and she just didn't want to.

As for a benefit, well, no. Chocolate is the one food we don't give her, and going someplace to get a bag of candy that most certainly would include chocolate, which we'd have to fight to keep her from eating---no.  It could be argued that she might pick up some social skills, but it's a hugely isolated set.  Most of the time, you can't go around to people's houses or cars and say "trick or treat" and then get candy.  So any argument that it would benefit her was pretty weak.

When I started applying the questions to activities, it opened my eyes.  There's a lot I'd like to do with Janey, or like to have her get to do, which frankly are things that I want her to do, not things that will give her enjoyment or benefit her.  This past spring, we tried Special Olympics for a bit.  It might be great for some kids, but for Janey?  No.  She had no interest in it.  She is not competitive, she didn't interact with other people there, she didn't get exercise from it as she wouldn't readily participate.  It was nice to get outdoors, but we could do that any time and place.  I realized it was ME who wanted her to be in it, for reasons that had little to do with Janey. 

Janey very happy, headed to the store.

I'll contrast that with an activity Janey very much enjoys and benefits from---the daily walk to the store.  The store is a convenience store near us, which changes names constantly but is currently a 7-11.  The after-school walk there is Janey's favorite ritual.  She asks for it every day.  When we get out to the driveway to start the walk, she is literally dancing with excitement.  I hold her hand and we walk the short way to the store.  She goes in and looks over the chips for a long time.  She only ever picks out the same two or three kinds in rotation, but I know how just looking over a shelf of choices can be a thrill.  When she picks her chips, I then switch the big bag she picks for an identical small bag, and we talk about how they are the same.  She takes the chips to the counter, waiting in line if she needs to, she is patient while I pay, sometimes she'll say thank you to the cashier, she gets a lot of smiles, and then we walk home.  She eats the chips in the driveway while the colony cats of the neighborhood circle her legs to get dropped chips.  She is happy and engaged.  She is also learning---learning the rules of walking along a busy street, how we exchange money for products, how we act in stores, how we treat animals---lots of things.

There are other activities Janey enjoys and benefits from---car rides with music, cooking with Daddy, picking out and putting on videos, going to the library to pick up the books I've ordered online and of course going to school, the big one. 

I wish that Janey could participate in more activities.  But the truth of it is, when I think about it, I wish that for ME.  Not for her.  Her life, when I allow myself to broaden my view of what an activity is, is pretty full already.  In this age of Facebook, I've realized that sometimes what I've wished for are Facebook photo opportunities, a little.  I'd like her to do more of the "normal" childhood things.  But she is 13.  She's growing up.  By that age, she knows what she likes and doesn't like.  I think about myself.  If I had been made to participate, at that age, in sports, or in an art class, or in a dancing class, all things I have little interest in or talent for, I would have hated it.  So they would have failed the enjoyment question.  But would they have benefited?  Truthfully, by that age, no.  I am much the same person now I was then.  I don't like sports.  I am not artistic.  I don't like to dance.  And I knew my mind by that age.  I knew my limits.  Some might argue this point, but from what I've learned from my sons, kids by that age know what drives them, and Janey is not different from other kids that way.  It's very, very easy to tell what she loves and what she doesn't.

As Janey gets older, as her own path in life starts to become more defined, I need to give her the same respect we all deserve, the same right to find her own passions.  It's even more important for me to follow her leads, because it is far too easy when a child doesn't communicate in traditional ways to impose our own will on them.  I'm going to try to often stop and ask---will she enjoy this?  Will it benefit her?---and use those answers as my guide.

Summer without dread (mostly)

Smiles on the train

Tuesday was Janey's last day of school, and I kept thinking it didn't feel like the end of the school year and the start of summer.  After some thought, I put my finger on why---I didn't feel dread.

Of course, I feel guilty saying that.  It doesn't fit with the idolized autism mother I always compare myself to.  I'm not supposed to feel dread that school is over.  I'm supposed to feel happy, energized, ready to enrich Janey's life with all kinds of helpful and fun activities.  But every year up until this one, I felt dread instead.  Dread of long days full of tears, days where my good intentions to do all kinds of interesting activities with Janey ran up against the fact she didn't want to do those activities, or her behavior was such that I couldn't do those activities with her alone.  Dread of the feeling in mid-afternoon where all that keeps me going is counting the minutes until Tony gets home and I can collapse and have ten minutes to myself.  Dread, mostly, for Janey---for the unhappiness that I can do nothing about often, for the boredom I fear that she feels, for the confusion I worry she has about transitions like school to summer---dread of a summer that I always feel falls far short of what I want her summers to be.

Rest with William on the grass

However, this year, the dread was almost non-existent.  A lot of that is that Janey is just plain easier and happier than she used to be.  It's a rare day that she screams and cries all day.  It is possible, now to take her out in public even on my own at times, and certainly with one other adult.  But the other part is a change in my own attitude.  I have you, my dear blog friends, to thank for that for that to a large extend.  Last year I wrote about my guilt over the sameness of Janey's days when there isn't school, about how the highlight of the day is often just a walk to the corner convenience store, about how many videos she watches.  I was comparing her summer life to my own at her age----by the time I was 12, I worked at least part of every summer, I spent tons of time on the ocean, I did things with friends and read and biked and all the things that summer in Maine in the 70s and 80s meant.  But that was my life.  And you all reminded me that Janey might be quite content with her days as they are---that I should not feel guilty about what got us through the day---that a walk to the store for her might be like a walk along the coastline was for me.  I took what you all said very much to heart, and it helped me a huge amount.

Picking out a donut

So---I'm feeling better about this summer.  I've taken a few other steps to help too.  Tony has arranged his vacation time around Janey's summer school, so there are not long periods of time with just me at home.  I've figured out that making sure Janey gets a lot of walking exercise in early in the day leads to more relaxing afternoons.  I'm keeping the house very well stocked with foods she likes, and we are walking to the corner store several times a day.  And I'm letting her watch videos as much as she darn well pleases, and not feeling any guilt over it.

Yesterday, William and I took Janey into the city on the commuter train.  I would not have dared to do such a thing in the recent past.  It went fairly well.  We let Janey pick where we walked, and that resulted in an interesting random ramble around downtown, eventually into a small park with a fountain.  Janey said "I want to swim!" and I rolled up her pants and took off her shoes and she waded in the fountain for a long, long time.  And I didn't care that she got some looks for the financial world type people that were all over the park.  I enjoyed people-watching them, so the looking was two-way.  We met Tony to take the train home with him after work, and then I took a long nap.  If the summer can be like yesterday---not too bad, guilt-free and with Janey at least neutral if not happy all the time, I'm going to call it a success.

South Station, Boston

Walking along the Rose Kennedy Greenway

The best weekend ever

The title says it all.  This past weekend with Janey was the best one we've ever had with her.

Janey, all weekend long, was happy.  Not manic happy, but very, very happy in a contented, sweet way.  There was not a single moment of tears or screaming.  She was smiling pretty much all the time.  It was amazing, truly amazing.  I would have given anything to be able to see this weekend during some of our darkest times.

We were able to do things that we are never able to do.  We took Janey to a new food place, Wahlburgers, and got takeout, which took a little while, and then ate it outside in the city.  I felt like I was living someone else's life.  We went to Savers, and Tony was prepared to take Janey out, for a ride or walk or whatever to keep her happy.  Instead, she was happy AT the Savers.  For 90 minutes.  Happy looking around, laughing, talking....amazing.  We sat back on Sunday night and watched two hours of old Family Feud episodes.  Janey watched with us, or played with her iPad, all in perfect contentment.  She slept well, she ate well....she was beyond a delight.

And of course, I want to figure it out.  What was different?  How can I capture what happened and repeat it?

I have a few theories.  I think she's very, very happy at school this year, and that translates to happy at home.  I wonder if she has pain of some sort a lot of the time, and it was gone for the weekend.  It was the first cool weekend of fall, and perhaps she loves fall and hates the heat, like me.  Tony and I had little else going on, and gave her a lot of attention.  We were both happy, after a long week, and she picks up on emotions tremendously.  Who knows?  I almost hate to write about the weekend, for fear of the jinx, but I had to.

There were lots of times when I thought it would never be like this.  There were weeks and months and even years where it was so hard I honestly sometimes felt I couldn't go on.  And however hard it was for me, I know it was so much harder for Janey.  No-one should ever be unhappy as much as she was.  I have so much joy when I see her happy.  It makes me realize that is all that matters with her.  The autism makes no difference.  The intellectual disability makes no difference.  It's her happiness that makes the difference.

I will try not to over-analyze.  I just wanted to record this weekend before it slipped into the vast territory of past time.  I wanted to have a record of how it can be.  And I wanted to thank Janey, and tell her I hope with all my heart that happiness like she has had lately can be the default state for the rest of her life.

Later and Longer, but the stages do pass

Sometimes, it takes the observation of a stranger to realize things.  A month or so ago, I was with Janey at our favorite store, the Savers thrift shop.  She was looking with me at toys when I noticed another little girl, about Janey's age, who I strongly guessed was also a member of Autism Nation.  She ran over to where we were and grabbed a stuffed animal.  Her mother was right behind her and apologized, and I said it was fine, and then said "I think our girls are kind of similar"  She looked at Janey and smiled, realizing what I had realized, and then said "But my daughter is wild!"

I realized at that moment that Janey is no longer wild much.  She doesn't run away from me.  We can go for a walk and not hold hands, and she pretty much stays with me.  Sometimes she goes a bit ahead, because I am a slow walker, but I can call her to come back or to wait for me, and she does.  I don't worry about losing her if I take her to a store (which I don't do much, as she still doesn't like them at all) or an outdoor place.  She of course still is in motion most all the time, but it's mostly hand flapping and jumping, not running away.

It's always a bit of a surprise to me to realize that a behavior that Janey used to have is gone.  I think that's because stages with Janey show up much later in life than with most kids, and last much longer.  That can make them seem like they are just part of her, but they aren't, always.

Another example was Janey's mischief stage.  That was a tough one.  She'd do things like empty bottles or jars or glasses of water onto the floor, or whole bottles of shampoo into the tub.  Even when watching her every second, she'd manage to slip a little ahead of us and do something messy and destructive.  That stage lasted about a year, and it was a long year.  I think now it was a stage that is a typical toddler stage, exploring the world.  The difference was that Janey was taller and more mobile than a toddler, and less able to understand limits, so it was not as easy (or as cute) as it would be with a toddler.  Now, unless Janey is truly trying to make something she's seen us make, she doesn't do the mischief stuff much.  She might decide to make Kool-Aid using half a jar of powder and a drop or two of water, in the process making a huge mess, but that is a by-product of trying to help herself, not just a mess for fun.

The toughest stage of all is one I will euphemistically refer to as the "diaper incident" stage.  If you have a child with autism, you probably know what I mean.  It's horrible, horrible, horrible.  It results in malodorous messes that take hours and hours to clean, and a feeling of total despair.  That stage lasted a couple years---not with incidents every day, but more than enough.  One is more than enough.  Now, while knocking on wood and pleading for no jinxes, I will say that Janey is pretty much 100% trained in that part of toileting.  Thank goodness.  The other type of toilet training is maybe 70% right now (although close to 100% at school) and I will write about that soon, but the incident part?  Hopefully gone for good.

The bottom line is that the stages Janey has gone through, and a lot of kids with autism go through, are not completely unheard of stages for typical kids.  But they start far, far later in life, when there is more potential for mayhem and less tolerance by the general public, and they last much longer.  At least some of them, though, do pass.  They pass quietly.  There isn't a sudden moment when they end.  It's more a gradual realization that, wow, she hasn't run away from me for a long time now.  She doesn't empty shampoo any more.  She hasn't done the horrifying "painting" in years.  Wow.

Some parts of autism are, at least for Janey, probably going to be forever.  But other parts aren't, and I am proud of the progress my sweet girl has made, just as much as a mother of a two year old is proud when some stages end.  I'd say I'm even prouder of the end of those later and longer stages.  And more relieved.

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.

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!

Portrait of a great weekend

Janey's moods often seem like the weather.  You can't control them---they come and go as they wish.  This weekend featured sunny, sunny, beautiful weather.  She was a joy.  Tony and I told ourselves this morning to remember how it is when she is like that, to remind us not to lose hope when the storms come.

Here's some moments from this weekend----

Janey woke Saturday with one idea in her head---getting some cupcakes.  Instead of throwing a fit, she just kept charmingly on message, asking for them.  When Tony said something like maybe later they would go to the Stop and Shop and get some, she added that into her request---"want to go to the Stop and Shop?  Want to get cupcakes?"  When Tony was delaying leaving, she went up to him and said "What's going on here?" in a perfect tone for the occasion.  We laughed and laughed, and they set out to get the cupcakes.  Janey only ate the frosting off a couple of them, but that wasn't really the point.

We went for a long "ride in the car", which was another request of Janey's.  She doesn't particularly care where we go during these rides.  She just likes the journey.  We drove around and looked at some  leaves, and then went to the Savers thrift shop.  A few weeks ago, I had gone there with Freddy and Janey, and noticed that suddenly Janey is actually interested in looking at the toys---not just fixating on one or glancing at them, but really looking them over.  I wanted to show Tony the change, and Janey showed him.  She stayed with the toys for a long time, commenting on them "A monkey! A pony!"  She found a huge stuffed snake, which she had to have, and we were glad to get it for her.  On the way home in the car, she sang a clip of a song "When ya going to give me some TIME, Sharona?" and we sang the rest of the song for her.  I felt like crying from happiness at how much fun we were all having.

When we got home, Janey "scared" Freddy with the snake, and then tried scaring the cats with it (mostly by flinging it at them)  Freddy was appropriately scared.  Later, she walked up to him, stood there smiling, and said "I know you!  FREDDY!"  It was an odd and chilling in a good way moment.  A few times lately, I've noticed her looking at people or things like she is really seeing them for the first time.  It was almost like she was saying "I get it now!  You are my brother Freddy!" Of course, she's known who Freddy was always, but it was like it hit her on a new level.  Hard to explain, but amazing to see.

Janey went to sleep at 5 pm last night.  We considered waking her after a bit, worried we were in for an early-awakening night, but she slept until 5 this morning.  She woke up again very happy.  As she sat next to Tony on the couch getting her shoes put on, he said "I'm going to make some coffee you can steal!" and she laughed and laughed and repeated "you can steal coffee!"  She then looked at Tony with the most wonderful smile, and put her head on his shoulder.

I love times like this with Janey.  I wish they would last forever, obviously.  But they don't.  I wish I could feel they would.  I wish I could think "We've turned a corner!  It's going to be easier from here on out!"  Sometimes, I do let myself think that a bit.  But it's a little like thinking the glorious days of fall will never turn into winter.  I don't say this to be negative.  I say it because knowing that perfect fall days won't last forever doesn't make them any less perfect, and because when it's the middle of winter, we can remember that the snap of a crisp fall day will be back.  I want to always remember that.

Yet Another Screaming Post

If you read this blog regularly, you might be thinking "She's writing about screaming AGAIN?"  Well, yes, because right now, it's the very toughest issue we are facing.  You might ask, "Why would screaming be tougher than all the other issues?  She's got plenty to choose from--severe intellectual disability, lack of toilet training, self-injury, sleep issues..."  Yeah, I do have a few.  But none of them affect our life quite like the screaming.

I'll use yesterday as an example of how the screaming affects and limits Janey's life and our own.  Janey was in rare form yesterday, with a huge amount of screaming.  It started early, very early, like 5 am.  We were awakened to screaming, not for the first time that night, of course, but this time we were up for good.  We tried to figure it out, as we generally uselessly always do.  She was wet, she was hungry, she hadn't had her medication yet.  We run through the list, and it helps, or it doesn't.  By around 8, we were totally burnt out.  Imagine someone repeatedly screaming absolutely as loud as they can, at random intervals, and there being no reason we can possibly figure as to why.  We resorted to ignoring.  That is very hard to do, but it works as well as anything, not better, not worse.

Later in the day, Tony took Janey to the grocery store.  That is something she usually enjoys, and for most of the trip, she did yesterday too.  But near the end of the shopping, she suddenly screamed as loud as she possibly could, over and over.  The store was pretty empty, but a man around 50 yards away started holding his ears---Tony felt not to be nasty, but just because it was truly hurting his ears.  Tony braced himself for what we always fear will happen---someone calling the cops, as it would reasonably sound like she was being tortured.  But no-one did.  She screamed until she was sick of screaming, and then fairly happily checked out and came home in a good mood.  Tony, however, was shaken and burnt out.  It's harder and harder and harder to take Janey anyplace.  The sudden screaming outbursts make it at the least not fun, at the worse, frightening.

After a while with Janey being happy, she decided to start the screaming up again.  We were at that point exhausted and completely done for.  I tried giving Janey a shower, which sometimes calms her, but she was having no part of it.  I lay down with her, trying to calm her.  Finally, in desperation, I started doing a silly game of clapping her feet together (which she loves) and singing "Clap, Clap, Janey feels like screaming (3 times for that line) But We Aren't Going to Scream!"  It worked, for then.  I have no illusion it will work ever again.  I have so many times felt I've had a breakthrough with an idea about controlling the screaming, only to have it completely not work the next time I try it.

I spent a good potion of the night trying to figure out what might make her scream.  I was too tired to think very effectively.  All I came up with is that screaming makes something happen.  It makes us upset.  Even when we ignore it, that's something happening---us being unresponsive.  If we are in public, it creates a scene.  It hurries us out.

But what good does knowing that do?  If ignoring doesn't work (and it's completely impossible to ignore her in public---WE might be able to, but those around us can't), if the events that cause the screaming seem random---what are we to do?  We have no idea.  None at all.  In my dramatic moments, I have been thinking that the screaming is ruining our lives, and Janey's life.  It's that bad.  And I have nothing positive to end with here.  Just a silent scream of my own.

Downs and Ups and Downs

With Janey, part of what makes every day an adventure is you don't know which Janey you're going to get that day.  That's been particularly so this past week.  Usually, Janey's moods last a few weeks or so, but lately, they have picked up the pace and seem to change every few days.  It's emotionally a roller coaster.

Last Friday was a very tough day.  Janey got home from summer school about 3.  She had had some tough times all week after school.  I spent a lot of the day Friday while she was at school trying to think of strategies to help the couple hours between when she gets home and when Daddy gets home be happier ones for her.  I planned out a list of things we could do, depending on what she wanted---lots of snuggling, watching videos together, having a shower, playing outside, eating, reading---whatever she wanted.  I planned to be totally at her disposal, or to just let her rest, if that is what she wanted.  I was determined it would be a good afternoon.  Well, she got off the bus crying, and things deteriorated from there.  She wanted to do nothing I had planned.  She wanted to scream.  Between screams, she wanted to SAY she wanted something, like a drink, a snuggle, a shower, time outside, and then as soon as I tried to do that thing with her, she wanted to scream some more, and bite her arm, and fling herself down on her bed, and be hysterical.  I was tired out of my mind after half an hour or so.  In frustration, I finally yelled out "I can't take this any more!"  That stopped her cold---she seemed interested in the phrase, one I don't think I've ever said to her before.  I really don't like saying things like that to her, ever.  She took it up herself, and started adding it into her screams---a good long scream, and then "I CAN'T TAKE THIS ANY MORE!"  Which I bet she couldn't.  I finally just kind of gave up---I let her scream it out, while of course keeping a close eye on her to make sure she didn't hurt herself or try to leave the house or anything.  Tony got home, and she instantly dried her tears and hugged him.  I felt about 2 feet tall.  

So....I wasn't much looking forward to how the day would go Saturday.  However, somehow, by some twist of fate or miracle, both Saturday and Sunday were amazing.  It was probably the best weekend we've ever had with Janey.  Ever.  She was extremely happy, extremely engaged, full of hugs, saying all kinds of cool and relevant things, a joy beyond words.  I have no idea why, any more than I have any idea why Friday afternoon was so awful.  I've been trying very hard lately to live in the moment--to not spend the bad moments projecting into the future, to not spend the good moments worrying they won't last---to just accept each moment as it comes.  I've got a long way to go with that, and I am sure I did spend too much of the weekend trying to record in my mind just what circumstances had led to things being so good.  However, I don't think it was anything in particular.  It was as random as any mood of Janey's.  But it was wonderful.  We drove her brother to work both days, and she piped up in the car with comments here and there "Maybe we are lost!"  "Pepperoni Pizza!", and with songs and just happy, non-manic laughter.  We got her some pizza, and she sang "Staying Alive" to the cashier and charmed her.  We went into the Target and tried on hats and glasses and necklaces.  We went to the arboretum near us and looked at trees.  We snuggled a lot, watched some TV, ate a lot, all the glow of her wonderful mood.  At one point, in the car, Tony and I said to each other that when she is in that kind of mood, there is no child on earth more wonderful.  I remarked that if she was ALWAYS in that good a mood, we probably would be used to it.  It wouldn't seem as wondrous.  And we both got teary-eyed, thinking of that.

So...Monday was okay.  Not as happy a day, but okay.  And then today---after school, it was another Friday.  So much screaming and crying and arm biting.  It was hot, and I offered to fill the wading pool.  Janey wanted to, but as soon as we got back there, the ear-shattering screaming started.  For a few minutes, I still tried to fill the pool.  But I couldn't for long.  Her screaming is loud enough to be heard a block away.  It sounds like she's being tortured.  I turned off the water and took her in, where she continued to scream pretty much until Daddy got home, and this time, even Daddy couldn't fit it.  She screamed off and on all evening.

Now she is asleep, and I am weary but unable to sleep.  I wish so much I understood my little girl better.  I wish I could figure out how to give her more happy days.  Seeing how very, very happy she can be, it sometimes makes it almost harder, because I feel like there must be a key someplace.  There must be a way to pry open the door to the happiness that seems to snap shut suddenly and randomly.  But I don't know how.  And she can't tell me.  

When She Was Good...

I don't want to jinx things (I'm a Red Sox fan, which makes me have an unnatural fear of jinxes), but Janey has been in an unusual and special mood the last 4 or 5 days.  She's been in the mood Tony and I call her "precious" mood.  It's one of the rarer of her many moods---very happy without a touch of manic, sweet and lovable.  It's a quiet mood.  She doesn't talk a lot when she's in this mood; she doesn't make any huge strides.  She doesn't much answer our questions, or comment on anything.  She is just quietly content.

It's striking me writing this that it's an example of how it's not the autism or the intellectual disabilities that make things tough with Janey when they are tough.  In the mood she's in now, she would probably appear to an outsider more obviously autistic and "slow" than in other moods she has.  For example, a cashier at a store yesterday tried very hard to engage her---asking her questions, offering to let her hold a book we were buying, waving to her---and he got no response.  When I asked her to give him a high five---the social response that seems easiest for her to consistently do---that even took her about 2 minute to complete, as she slowly, slowly raised her hand.  But she wasn't screaming.  She wasn't biting herself.  She wasn't crying.  She wasn't frantically singing.  She wasn't quoting lines from videos.  We had been shopping for a while, and she was just being---sweet.

Of course, in my quest to always trouble trouble when trouble isn't troubling me, I worry that if these content, quiet moods became the norm, it would be easy to stop trying hard to help Janey.  I wonder what it would be like to have a child always like Janey is now.  It would be hugely easier day to day, I can admit.  But I don't know how much she would learn, or how much we would keep trying to reach her.  Our lives would be very different.

And I'm telling myself---stop overthinking this.  Just enjoy it while it lasts.  And it is enjoyable.  Yesterday, Janey gave Tony a big hug, on her own, because he had shared a big plate of assorted sauteed winter vegetables he'd made with her.  Now, what parent would not love that?  I've been reading to Janey a lot---long picture books she would usually close within seconds, and maybe toss them at me for good measure.  But in this mood, she's been sitting and at least looking like she's listening.  That's my version of the vegetable hug---my own personal parenting dream come true.

All of Janey's moods are part of her.  This mood will change soon, and who knows what we will get next?  I can't control the moods.  I don't control much about Janey.  I'm just along for the ride, and the best we can do is find something in every mood to embrace.  With this precious mood, Janey makes that pretty easy.

Randomness

Lately, for some reason, I've been thinking a lot about how random events affect lives.  If I hadn't happened to look in the paper the day I found the job that led me to meet my husband, I probably never would have met him.  If I hadn't happen to take the bad step out of my parent's travel trailer back years ago, I wouldn't have broken my leg.  And, through a combination of factors that are not all certain, but that lined up in a certain way, I have a daughter with autism.

I think most people have a feeling deep inside them, until something happens to change it, that their lives are somehow charmed---that they do things right, and because of that, life is not going to deal them surprises they aren't ready for.  I know I felt that way, anyway, until my first pregnancy went badly wrong and I wound up having an emergency C-section and being inches from losing working kidneys, feet from dying.  For a while after that, everything felt uncertain.  I realized that I had no special dispensation from life's tougher dealings.  Anything could happen to me.

After a while, once you realize that you are not untouchable, you stop thinking about it as much.  But I don't think you are ever quite the same.  You are never quite as surprised when things go awry, for reasons outside your control.  Janey having autism was not something I anticipated, but somehow, I don't think it totally blindsided me either.  I knew it could happen, because I knew anything could happen.

Why am I writing about this?  It's because I think sometimes the people that don't get having a special needs child, and to put it more broadly, the people that don't believe in helping others down on their luck, are people that have never had that experience that makes them realize that they too could be in the shoes of those "others"  If you truly feel you have control over what happens to you in life, it makes sense to oppose funds to help those with children with special needs, or those who wind up without a job or a way to feed their children, or those who lose their homes in disasters or their sanity to mental illness.

I think sometimes of the reception Janey gets in different kinds of places.  Almost always, the toughest places to take Janey are places where I think the percentage of people with lives untouched by true unexpected hardship is high---fancy stores, upscale streets, hushed cultural events, vaulted academic settings.  I am in no way saying there aren't people in these places with lives that are far more troubled than I can ever know, but there are less of them, I think.  When I take Janey to the convenience store near our house, I almost always get smiles, kind words, understanding looks.  It happens too often to be chance.  The people there often look as if life has been tough for them.  But they seem to get Janey---to at least get what it's like to have a child or to be a child with special needs.  It's a pattern I see a lot.  The people that embrace Janey, and embrace our family, have for some reason been through tough, unexpected times.  They have been hit by life's randomness.

A long time ago, when Tony and I were first married, we stayed at a hotel where in the room across from us, a child screamed all night.  I hope we weren't uncaring as to the plight of the child or the parents, but I don't remember thinking "those poor people!  That poor kid!"  Tony and I think of that child a lot now.  I have heard that screaming now, from my precious Janey, so often.  I feel quite sure the child was autistic.  I wish sometimes I could go back in time and somehow help those people, instead of feeling annoyed and wishing they weren't there, as I did at the time.

I wish I could believe things happen for a reason.  But I don't believe that.  I believe life is pretty random.  But we can choose how we react to the randomness, and we can ease each other's way, because someday, we ourselves might be the randomly chosen one.

Moods without triggers

Sometimes, once in a while, I can figure out what has made Janey upset.  But far more of the time, I have no idea.  The same strangely holds true for times she is very happy. Her happy, contented moods also seem to arrive out of the blue and have no real connection to the world around her.  It's very frustrating, but in a small way, also a little freeing, as I start to come to see how little anything I can do seems to help or hurt.

This week, Janey was up and down, up and down, all around the place.  She had a terrible day at school followed by a great night at home, a great day of school followed by a tough night, whole good days, whole bad days, nights where she slept, nights where she didn't sleep---it was a roller coaster.  Her teachers and I try hard to figure out a pattern, but so often, there just doesn't seem to be one.  For example, this morning Janey woke up happy.  That was after a night with little sleep (but little crying, either).  We took her with us to a thrift store, which can sometimes be very bad news, and we were able to stay a full hour.  I think she behaved as well as any child in the world ever has at a store, special needs or not.  She stayed with us, was interested in everything but didn't grab things, had a smile on her face the whole time, was calm---it was fantastic.  We gave her high praise.  Tonight, although nothing really has happened to change things in the interim, she is screaming and crying off and on continuously.  I don't think it's tiredness, as when she's tired she just goes to sleep.  I don't think we set her off in any way.  I think whatever drives her moods is internal.

I was very affected by the book I read recently, "January First", about a girl with childhood onset schizophrenia.  I don't think Janey has schizophrenia, but I do think she might hear things we don't.  Sometimes there seems to be little else to explain what sets her off.  She can be sitting there, happy as anything, in a quiet room with nothing to provoke her, and suddenly she screams hysterically.  Sometimes after this, she'll recite a phrase for hours---usually something from a video or song.  She doesn't say it happily, she says it in a haunted sort of way.  I wonder if these phrases jump into her head and scare her.

Everything we do to try to keep kids happy, to try to reinforce good behavior, is based on assuming there is a reason for good or bad or happy or sad behavior.  And even if the reason is internal, it's a reason, but what if you have a child that is not usefully verbal, and they are being tormented by internal forces that make them sad?  How in the world do you deal with that?  I have no idea.  On the other hand, although it's much easier to take, how do you explain Janey's extremely happy days?  Nothing seems to cause them, either.

I figure out little pieces of things, as I have lately.  I can comfort Janey a bit better all the time, by constantly analyzing what seems to work to calm her down.  But as for figuring out her triggers---I don't know. I don't know if I ever will, really.  Maybe I just have to accept that---to take whatever Janey shows up each day and work with that.  It annoys me when sports announcers say things like that "The Red Sox just didn't show up today", when they played badly, but maybe that's a useful way to see it.  Happy Janey just doesn't show up some days.  Crying Janey shows up.  The next day, Happy Janey might be back.  Maybe I need to stop trying to fix her moods and start working harder to accept them, to live with them.  Janey, you never, ever stop making this parenting gig a challenging one.

The Least of These

This evening, Janey craved some ice cream, as she often does.  Tony and the boys were off to a concert, the first big concert the boys have been to, so it was ladies night here, and I decided we'd have ice cream for our ladies night.  We walked to the corner store.  Believe me when I say that it's not really an upscale place.  Tonight was a vivid illustration of that.  The people hanging around outside the store were people you usually only see in movies when they want to show that something very scary is about to happen, or that you are in a very, very bad neighborhood.  But Janey wanted her ice cream, and my fear of how she'd react if we turned around far outweighed any nervousness about the folks outside the store.  As we got close to the door, one of the lowlife looking guys rushed over and opened it for us, and gave Janey a little bow.  When we got in, several other interesting looking people started shouting toward the cashier.  I braced myself for some demand for money, but instead they were asking him if there were any rules about how many squirts of syrup you could put in a slushie (if you are interested, there are no limits on that).  Janey took a long time to pick out her ice cream, as she doesn't like to rush important decisions, and a woman that looked very much like she might be involved in a very old profession was waiting to get ice cream, but when I told Janey we needed to hurry it up, she said "No rush at all, honey, let the little sweetie take her time"  So we did.  Finally, ice cream in hand, we went to check out.  The cashier smiled a huge smile and said "Hey, I know that girl!  Hi, there, darling!"  I said "yes, she's a regular" and he laughed and laughed and said "We are always happy to see her!"  I asked Janey to say thank you, which she sort of did, and we were on our way.

Walking home, I was fighting back happy tears.  Janey certainly wasn't acting "normal" in the store.  She was making her sounds, and jumping up and down, and waving her arms about, and in general not acting at all the way you'd expect an almost 9 year old girl to act.  But the people there treated her with kindness and respect.  And I thought how that's pretty much the only way I judge people any more.  If you are good to Janey, if you are kind to her and accept her and treat her well, I see you as a good person.  Maybe that's too simplistic.  But I can't think of a much better gauge.

I'm not very religious, but from somewhere,  from some long ago Sunday school lesson or sermon, I recalled a Bible verse.  I looked it up, and it's Matthew 25:40, which says "And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me."   It's referring to feeding the hungry, and clothing those without clothes, and visiting prisoners, but I don't think it's a stretch to apply it to being kind to another kind of "least of these brethren", those like Janey, with autism and intellectual disabilities.  How we treat people who, although I don't like to think of them as "less", are different than us---that seems like a pretty good way to judge people.  And you just never know.  Today reminded me of that.  Another time, the person going out of their way to be good to Janey might be a millionaire, or a grumpy teenager, or a fellow classmate, or anyone else.  Whoever they are, I thank them, from the bottom of my heart.

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.

Summer blues

Janey is watching Curious George, which has become my 7-7:30 morning respite time.  She has no interest in it other times of the day, just that morning block!  And I am gearing up for the first day of summer.

I've never liked summer.  As far back as I can remember, the first day of summer felt like panic to me.  I like a schedule, blocks of time filled with predictable activities.  I enjoy the weekend, and holidays, but summer---that's a long time.  Couple that with my extreme dislike of hot weather, and even as a girl growing up in coastal Maine, probably the ideal summer location in the world, I didn't like summer.

With Janey, that feeling has grown.  Janey loves school.  There is barely a day she doesn't get excited to head out the door to school.  Every time I tell her it's a school day, she looks like I've offered her a huge treat.  This morning, I told her that school was all done for now.  She'll start summer school in a week or so, but that is never quite the same.  This week is open.

I feel sometimes like the worst mother in the world in how much I dread open weeks like this with Janey.  It's not that I don't want to be around her.  More and more, I love being around her.  But unfilled days for Janey are not lazy or idyllic or creative.  They are very tough.  Janey needs to be watched every single second.  She needs to be kept busy, or she either gets upset or retreats into a repetitive activity like seeking out paper to eat or things to spill.  Keeping her busy wouldn't be hard if there were more I could do with her alone.  But taking her on any kind of outing, like to the beach or a park or a museum, is not a one person job.  She is a runner, and I am not as fast as her any more.  She really needs at least two eyes on her, and one of them has to be pretty physically fit.  I still can take her to the store, but she hates stores except for grocery or drug stores.  I plan to do a grocery shop soon, but that doesn't fill up much of the day.  The few times I've tried taking her clothes shopping or browsing a craft store or the like---disasters. (read about one trip I particularly remember here)  She will tolerate being read to more and more, but not for more than about 10 minutes in a row.  She'll play with her iPad, but also, not for long periods of time, and she'll watch TV or videos, but aside from the fact I don't want her electronically entertained all day, she is too restless to do that for much time in a row also.

What do we do?  We often spend a lot of the day in the back yard.  If Janey has water and dirt to combine into mud, she's usually pretty happy.  But today is rainy and thundery, and even on days that aren't, after a bit Janey is soaked and filthy and we need to come in.  Often, I then turn to a long bath time, but Janey no longer is as interested in long baths.  So we piece together a day.  We read a little here, dance to music a little there, snuggle and sing a little, watch a bit of TV, eat, go to the grocery store, bug her brothers, pat the cats---and it's still 10 am and there's a lot of day left.

What would most 8 year olds do in the summer?  Well, most 8 year olds would have friends to play with.  With older brothers like Janey, they would have gotten into video games and would be playing them.  They would know how to read, and we could go to the library every day.  They would be able to entertain themselves with drawing or crafts.  They would be able to go to camp.  We could go to the beach, just the two of us.  We could go to playgrounds without the fear of them running away.  I feel guilty, as I always feel guilty, that I dread a day alone with Janey so much.  But thinking of it that way, I do see that a day with Janey is not a day with most 8 year olds.  There is never one adult alone all day at school responsible for Janey.  In the course of the day, she might be under the care of 6 or 7 different teachers, aides, therapists, etc.  They do a wonderful job, and I am extremely grateful for them.  I can't do their job alone.

And I worry I am coming across as complaining about caring for my own child.  Although it might sound that way, it's not the case. It is my job to be with Janey, and my joy.  But I wish for her that there were more options open for her open days.