Growing Understanding

Lately, Janey seems to be making big strides in understanding what we say to her.  Or maybe she always understood, but didn't respond most of the time.  But the last week or so, I feel like she's actually listening to us.

A good example was last night.  Janey wanted very badly to eat Cheez-Its on my bed.  I told her she couldn't.  She said "YES!" and I laughed and said "No!" She said "Yes!" and laughed too.  It felt like a little conversation.  Then I said she'd have to take the Cheez-its in the kitchen to eat, and she did exactly that---took them in there, grabbed a few, came back next to the bed eating them, but not on the bed, and then went to get more.  She seemed to be pushing it as far as she could without directly doing what I said she couldn't, which felt pretty typical 8 year old to me!

Yesterday we all went as a family to a great BBQ place.  We don't do much as a family of five any more.  The boys have their own schedules, and our small cars are pretty crowded with us of us in them, but I felt determined after this past week of horrors to do something as a family.  It at first seemed like it was going to be a disaster.  After we ordered, I asked Janey where she wanted to sit, and she tried to lead me out the door.  I made her come back, and we sat down, but she started to get upset.  I decided to take her back out until the food came.  As we walked around outside, I explained what would happen---"It's a meat restaurant.  They are going to bring us lots of meat and some cucumbers and some spinach and some rice.  We'll have lots to eat"  It's the kind of thing I always hear recommended for kids with autism, like a social story, but in the past, when I told them, it had no impact.  This time, it somehow clicked.  We went back in, and Janey sat quite nicely and ate.  It helped that the food was fast and great, and that no-one expects dainty behavior when you are chowing down on ribs.  At one point, sitting there, all five of us, I said "It feels like a family of five here, like Janey is the same as the rest of us"  That sounds sort of wrong, but it's a true feeling---It was one of the first times ever I felt like I was sitting down with my three kids enjoying myself, not somehow trying to keep it all together with Janey, being four caretakers and her.  Of course, the minute I said that Freddy rolled his eyes and I saw Janey had stuffed a big hunk of paper towel in her mouth, but still...the moment had happened.

There's no miracle breakthroughs with Janey.  This has still been an awfully tough week with her.  But little steps are great.  Just now, she'd been watching her videos all morning (lately, we are back to Belle's Enchanted Christmas, and I am extremely sick of it).  I decided that Tony and I would watch an episode of Coach on Netflix for a break.  Janey tried hard to grab the remote and change the show, and got it a few times.  But we both kept telling her "It's our turn for TV.  We are going to watch a show, and then it will be Janey's turn again", and gradually, she stopped trying to change the show.  I won't say she was thrilled, but I think on some level she actually got it that it was our turn.  Now it's her turn again.

School starts back tomorrow, thankfully.  I hope there is never another week like this in Boston.  But like with the city of Boston, life goes on, and you have to be strong and keep trying and keep feeling pride when you can.  It's all you can do.

A very tough week

When I say this was a very tough week, I am certainly not just talking about my own family.  Living in Boston, it's probably been the toughest week for almost everyone that they've had in a long time---the horrible Marathon bombing, the shootout last night, the shelter in place order today---yes, not a week any of us want to relive.  Most of all, of course, the families of those who have lost their lives, including the family of the little 8 year old boy who lived less than half a mile from Janey's school.  We didn't know him, but I am very sure that many people I know did.

On a personal level, it's been a very, very tough week with Janey too.  She was not happy all week.  I'm sure part of that has to do with our preoccupation at times with the news, and her ability to sense our mood was not normal.  It was vacation week, and she was home.  We didn't have a lot of plans for the week, and even less once all the events started to happen.  Janey spent huge parts of each day crying.  She wanted school, I am sure.  She was on a huge roll at school, and she seems to be in the middle of some kind of leap forward with thinking and talking, which is wonderful, but it makes for a hard time to be cooped inside.  At a few points when she was playing outside, she decided it was time to walk to get ice cream, which is down the street, and rushed toward the sidewalk.  Luckily, we have a gate on our driveway and no other way to the sidewalk, so she couldn't get far, but the gate isn't always closed, although it was those times.  That illustrates why I don't try taking her many places on my own, and my teenage boys are less and less inclined to want to head out for a fun day with their sister.  I can't tempt them with meals out or promises to buy something.  They get as tired as I do of the stares.  So when I'm on my own with Janey, I don't take her out much.  And today, when we could have (Tony was home, as his office was closed due to all going on), we weren't supposed to leave the house.

Janey has actually been happier today.  A lot of that is having Tony and me both around.  She doesn't like to not have at least one person paying close attention to her.  She gets that at school, and she wants it at home. She's quite chipper today with that kind of attention.  But if we let our focused attention stray just for a minute, she finds a way to get it back, it seems, or she just finds a way to entertain herself---squeezing out toothpaste, tossing things across the room, smashing on windows, checking if the fridge is unlocked and taking things out, pouring soda after shaking up the bottle, putting things in her mouth like paper or yarn....it goes on.  It seems like all week, it's either been the crying or the mischief.  It's hard to say what is more tiring.  I guess for me, it's the crying, but both are not easy.

I think also Janey is going through a growth spurt.  She is hungry around the clock, hugely hungry.  I remember both boys having a period of time like that when they were 8, and again about when they were 11.  It happened just before they grew a lot.  So that's not necessarily an autism thing, but it can be hard to keep up with her demands, as she doesn't much understand "Wait until lunch" or "You've had enough right now"  She just repeats her demands over and over and over "Do you want to get me some bacon?  Do you want ice cream?  Onions, please, onions!  Pizza right now!  I need some nuts!  You need some oatmeal!"  Pronouns reversed or not, it's endless.

Overall, a week I would just as soon forget forever, for so many reasons.  I am proud to live in Boston, which I can truly say is one of the best cities on Earth, but this particular week has been a painful one for Boston.  And one that has made me think often that no matter how tough parenting an autistic child might be, I am lucky to have my Janey and my boys.   Incredibly lucky.

A day of highs and lows

It's Patriots Day, Marathon Day.  The kids are home on vacation, and William was at Brandeis last night for an overnight.  He loved it more than he already did after the night there, and we bit the bullet and made it official, putting the deposit down to enroll him.  Aside from all the money fears (he got a great but not full scholarship, but loans should get us by!) and the bittersweet feeling of my baby boy being almost a college boy, it was a hugely happy moment for me.  We've had a journey with him, and he has reached this point through his own extremely hard work and determination.  I am so proud of him.

Janey wasn't enjoying the day at home.  She knows when the weekend is supposed to be over, somehow, and she wasn't happy it wasn't.  By afternoon she was crying most of the time, and I was tired, tired, tired.  It was feeling like an endless day that was going to start an endless week.  Finally I calmed her down enough to sneak onto Facebook, hoping to play some Scrabble.  And then I saw the many alarming status updates, and checked the news.  And the day took a dark turn.

We live within Boston city limits.  When the sun shines on the Hancock building, in Copley Square where the Marathon ends, you can look down to the end of our street and see it.  Although I'm certainly not a runner, the marathon is huge here.  I tuned in earlier in the day for a minute, to see the winners.  My mother grew up near the starting line and watched every year growing up.  Freddy takes the train every day to Back Bay on his way to school, within sight of where the explosions were.  I've entered the library right across from the explosion sight many, many times.  It feels surreal, horribly and scarily surreal, that this has all happened here.  When I was watching the endless coverage with the boys, and we heard people say they were standing with the people of Boston, we looked at each other and said "We ARE the people of Boston"  

Janey of course understands nothing of what happened, besides that she wasn't able to watch what she wanted on TV for a while.  I took her for a little walk to meet Tony coming home from work in the city, taking the train by all that had happened.  I grabbed him and hugged him, and Janey laughed at our odd behavior.  

I would never say I'm glad Janey can't understand things like terrorism.  But sometimes, there is comfort in knowing that no matter how hard autism makes her life, she won't be able to truly understand human evil.  She won't be like her brothers and father and myself, hearing and seeing one awful thing after another that has happened right here in our city and thinking of those who have lost life or limb.  She is spared that.  She knows sadness, of course, but I don't think she can understand evil.

I wish none of us had to try to understand evil.