Tuesday, April 30, 2013

These Happy Golden Moments

The title, of course, is a modification of one of my favorite book titles, "These Happy Golden Years" by Laura Ingalls Wilder.  I hope some day I'll have a whole golden year, but for now, golden moments are enough, and last night, I had two of them, the kind of moments I think of in my head as movie-ending moments---moments that if you wanted to show a happy ending, you could freeze my life at, and you'd have one.  Life doesn't freeze like that, but that probably makes the moments even more of a treasure.

Movie-ending moment one----Freddy and Janey are playing in the back yard.  Freddy is fooling around with a long stick---balancing it on one hand, and then one finger.  Janey is watching him with admiration, really paying attention to him, with the kind of look that younger siblings get when their older siblings do something that looks amazing to them.  I am sitting watching them.  The sun is low in the sky, and it hits a point where it lights up both Freddy and Janey's hair---Freddy's curly mop and Janey's blond straight tresses.  For an instant, they both look like they are lit up from within, a flash-bulb scene of childhood and happiness.

Movie-ending moment two---Janey comes up to me and says "Do you want teat?"  I am surprised.  We are mainly coffee people, although we have tea on occasion, and I had no idea she knew that word.  I ask her to show me the tea, and she goes to the kitchen and first points to the cold coffee in the coffeemaker.  I say "Oh, you want coffee?" and she then points up to a high shelf, where weeks ago we put 4 small teacups she had picked out at the thrift store we loved, bagged together.  We had washed them but then put them out of reach, as they were delicate, and hadn't mentioned them since.  I get them down, and she eagerly takes two and puts them on the table, and leads me back over to the coffee, saying "Would you like some tea?" and finally the dense me gets it.  She wants to have a tea party.  I pour some cold coffee in both teacups, and she hands one to me, politely saying "Would you care for tea?"  I take my cup, she takes hers, and then raises it to me and says "Cheers!  Salute!"  We toast, and we take a sip---hers not actually reaching her mouth, as for the first time, we are playing a pretend game.  We are having a tea party.  And I am crying.

When you first realize that you have a child with significant disabilities---which is different than when they are diagnosed, as it's the moment it becomes real, the moment you realize they aren't going to ever be "cured", the moment you see that you have taken a very unexpected turn and are indeed headed for Holland instead of Paris---you give up a lot of dreams.  I'm not afraid to say that's hard.  I don't dream of Janey getting a high school or college degree.  I don't dream of her getting married, or having my grandchildren.  And for a while, that can feel like despair, like a life of giving and not ever getting back.  A perfect mother would say that's what a mother should do, but I think in real life, every mother dreams of the moments that seem like rewards.  I am here to say that those moments do happen with children like Janey.  There are wonderful moments, Happy Golden Moments, and they are as sweet as moments can be.

Sunday, April 28, 2013

Being Tough---my own way

First, I want to thank everyone who reads this blog.  You guys keep me going.  I wish I could know you all in real life.  Maybe someday, I'll travel around and try to meet every last one of you.  In the meantime, it's great to hear from you here, have you as friends on Facebook or just know you are out there someplace!

Last week I was hit with a huge amount of self-doubt.  There were lots of reasons, some I'm not going to get  into just yet, but I was feeling hugely down on myself.  But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.

I'm never going to be tough in some ways.  You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support.  I am thankful there are people that can do those things.  If there weren't, we'd be back in the bad old days, and Janey would not even get an education.

But I am tough in other ways.  I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there.  I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life.  I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort.  I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement.  I'm not looking for rewards for this, but I'm realizing it's something to be proud of.

Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism.  I feel I don't do enough for the greater autism world.  But this morning, a song came into my head.  I'm not very religious, but I love religious music.  It's my form of faith, I guess.  Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday.  Here are the lyrics...

Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!

I've always loved that hymn.  I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness.  I can't light up the whole room, but I can light up my corner.  And that is what I am trying to do with this blog.  I can light my little corner.  I can write honestly and truthfully and in a heartfelt way.  That is something I am able to do, and it's my way of lighting my small corner.  It's my way of being tough, but true to myself.  And I'll keep doing it.

Thursday, April 25, 2013

When is autism going to make me tough?

I would like to get tough.  By tough, I don't mean mean, or angry, or physically strong.  I mean tough mentally, in that what people say to me won't bother me, in that I can not be moved to tears myself by Janey's crying, in that I can stand up for Janey always, to anyone.  If it's true what the cliche says, and that you are given "special" kids because you are especially strong, well, as I've said before, a mistake was made.  I am not strong.

What would a strong, tough mother do when, as I wrote about last time, someone cursed out my child in a grocery store?  What would a tough mother do if, as happened when Janey was younger, she was promised a full day seat in preschool and another, tougher family got it instead?  What would the kind of mother I wish I could be do when Janey has been screaming for hours demanding something?  That tough mother would have confronted that woman and educated her on autism and politeness.  She would have gone to the superintendent or higher demanding Janey get the full day placement she deserved.  She would steel herself against Janey's crying, and absolutely never go out in the middle of the night to get her strawberry milk to make her stop crying.

I'm not doing opposite talk her---trying to say that being tough isn't really the right approach.  In those cases above, it is.  Being tough is what I should be.  But I can't.  I'm no good at it.  I heard the phrase as a kid "You catch more flies with honey than with vinegar" and I've run with it my whole life.  I am not confrontational.  I am no good at being strong-willed.  I want to keep everyone happy.

Autism parenting is supposed to change that.  I've read about that happening in countless books and articles. People who never thought they had it in them are marching into schools or politician's offices or public rallies and speaking up, because their child has given them the strength to do it.  And they are making firm decisions about raising their child---no more videos!  no more middle of the demands!  no more giving in!---and no matter how much their child cries or hits themselves or seems to be falling apart, they KNOW they are right. They stick by what they have decided, and everyone is better for it.

What do I do?  I accept the half day placement.  I walk away from the nasty woman and go to the car and cry.  I don't make any demands.  I tell Janey no to videos, no to strawberry milk, no to her 3rd bath of the day, and when she cries long enough, and looks frantic and sad, I give in.  I don't want her to be sad.  I don't want to confront people.  I don't want to demand things.

Somewhere along the line, a cosmic mistake has been made.  I'm not the tough mother I should be.  Either there's some tough mother out there waiting in line for her autistic child that was given to me by mistake, or the transformation that was supposed to overtake me once I was given the autistic child was blocked somehow.  I don't think I'm going to get tough at this point.  I mean, if Janey was being attacked by a lion, I'd jump in.  I think I've got enough protective instinct to protect her in cases like that, and in fact a few times I've found I did, when I truly felt she or my boys were wronged.  But it takes a lion attack style happening to bring that out.  I'm not a warrior mother.  I love my kids more than I love life itself, but that has somehow never transformed into what all the autism literature has let me to expect, a huge infusion of tough strength.

Tuesday, April 23, 2013

Mean people and kind people

This morning, on the way to school, Janey and I stopped at the grocery store.  She needed more juice boxes for school, where they keep a cupboard of snacks for her, as her eating is odd and often doesn't fit nicely into school lunch or packed lunch categories.  Janey has been tough lately.  She's making big strides with understanding and with doing things for herself, but as often is the case with her, those strides come with a period of strife.  She had already freaked out in the car several times, but I really had to do the store---I wasn't going to send her off to school without the tools they need to get her through the day.  That isn't fair for me to do.  So I hoped for the best and went into the store.

At first, things were okay.  Janey stayed with me, was cooperative and it seemed to be going well.  It was just a quick shop, and I had hopes of getting out of there without problems.  But then I made a huge error.  I stopped at the magazine rack.  I was hoping to pick up a crocheting magazine---my latest passion.  But I didn't follow the rules of shopping with autistic kids.  I lingered there for longer than the allowed 30 seconds. I must have looked for that magazine for a full 90 seconds, or maybe a second or two more.  I didn't find it, and the damage was done.  Janey wrenched out of my hand and ran down the aisle screaming.  I caught up to her, but not before she had grabbed some crayons and opened them in anger.  I tossed the crayons in the cart to buy---not for her, but because I couldn't leave them open on the shelf.  She continued to freak out the whole time we were checking out---loud screaming, biting sleeves, a little head banging, general hysteria.  We only had about 15 items, but it still felt like a long time standing there.

The woman behind me in line, when I caught her eye, smiled at me in a wonderful way.  She then said "I hope both of you have a better day soon!"  I wanted to hug her.  It was exactly the kind of response that is so, so wonderful to get---a kind smile, a nice word.  Then we walked toward the door, and a woman that had been in the next aisle stared me down as we both approached the door.  She muttered something under her breath that I won't repeat here, but it was far from pleasant.  It used some swear words in relation to Janey.  I felt like she had kicked me.  I just as quickly as I could got to the car, unloaded it, and had a few minutes sitting inside crying.

I don't understand what drives people to act like that.  Did she honestly feel I had just brought a brat into the store to ruin her day?  I know it's not fun to be around someone who is melting down.  I know that better than most.  But short of keeping Janey home at all times, I can't prevent the public from occasionally having to be present for one of her meltdowns.  I just can't.  And I'm sorry if they upset people.  I truly am.  I've become a little stronger over the years in dealing with stares and disapproval, but I have to say it's still incredibly hard for me to soldier through a time like today.  Which is kind of the point I'd like to make to that nasty lady---I very much don't need you pointing out to me how Janey was behaving or how it bothered you.  I'm plently aware of it.

But I'll end positively.  The sweet, sweet woman that was so helpful with her words and attitude---there are a lot of people like that.  And I hope they know how much a simple kind word can do.  I hope I have a chance in life to pay it forward and be like her as often as possible, because I have learned what a huge difference that kind of kindness can make in someone's life.

Sunday, April 21, 2013

Janey Live on Video, singing and talking!



I've had a few people ask if I could post a video of Janey's singing.  I've always had a hard time catching her in a true singing mood, and I've made some attempts that didn't work out.  But this afternoon, she was in the backyard running around and singing eagerly, so I grabbed my camera and started filming.  Hopefully, the link to YouTube will work and Janey can make her debut here!

There are a few things in the video that are very typical of Janey.  One is the pacing around.  I had to follow her back and forth across the back yard to stay somewhere near her.  Janey does this the whole time she is outside, pretty much.  Another is how I prime her for the songs.  I sing the first line or so, and she finishes, if she likes the song and wants to.  She sings lots of songs on her own, but in order to get some sung for the video, it was easier to do the priming!  You will also notice how she completely ignores my direct questions, like asking if she is ready to go inside, and my direct requests, like at the end when I asked her to say goodbye.  This is pretty common!  It's only the last month or so I sometimes get a "yes" answer to yes or no questions, but opened ended questions are just about never answered.

You can also see toward the end that Janey is getting upset, or you might not see that, but she is.  When I asked her to sing "She'll be Coming Round the Mountain", she started singing a bit in her frantic voice, and then she was repeating "Hickory Dickory Dock" over and over.  I could tell she'd had enough, so I ended the video.

Janey probably knows thousands of songs by heart and by tune.  She often makes connections between songs based on lyrics or on melody, or tone.  I wish I could think of the name of the song, but I played something in the car a few weeks ago, and when Janey wanted it repeated, she said "I want that Grinch song"  The voice of the singer and the general tone of the song were very similar to "You're a Mean One, Mr. Grinch", although the song didn't have the same melody or words at all.  She has started adding her own touch a little to songs, like giving them an operatic style finish.  She isn't at her best in this video, due to mostly being concentrated on running around, but I wanted to show how her talking and singing worked a bit, and how she moves.  I hope it's helpful or at least interesting to you all!

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.

Friday, April 19, 2013

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.

Monday, April 15, 2013

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.

Friday, April 12, 2013

Really, Parade Magazine, Really?

A few days ago, I saw a link to an online article from Parade Magazine---6 Great Toys for Children with Autism.  As I'm always on the lookout for toys that might engage Janey, I gave it a click.  Immediately after reading the article, I was so annoyed and upset that I told myself not to write about it until I'd given myself a few days to calm down.  Well, it's been a few days.  I guess I'm not quite as upset any more, but I still am pretty bothered the article.

What's my issue with it?   On a minor note, it bothers me because it feels slapped together, like someone said "Autism is BIG right now, and it's April, autism awareness month!  Let's get an article about autism that is upbeat, stat!"  But my big, major note issue with the article is that it completely and totally assumes every child with autism is high functioning.  

Here's a few quotes--- " As children get older, more complex board games like Boggle, Scrabble, checkers or chess are terrific"    Oh, yeah?  I can't wait until Janey gets a little older and can play Scrabble or chess!  Wait, I forgot, we are living in Realityland here!  Janey is NEVER going to play Scrabble.  I shouldn't say never.  It's highly unlikely Janey will ever play Boggle or Scrabble or chess.  It's highly unlikely she'll ever play Candyland, the game mentioned as being "simple"  Sure, these games might help her with her social communication, as the article helpfully suggests, but that would be assuming she was able to understand them.  And assuming she didn't put the small game pieces in her mouth.

Here's another quote...“It sounds almost too simple, but just a toolbox with a hammer, nails, and a screwdriver can be a great inspiration for play,” says Whitney. “Using tools not only builds fine-motor skills, it also builds a sense of accomplishment when kids can create something they’re proud of.”  Uh, okay.  Why did I never think of that?  I've got to get Janey some nails and a hammer right away.  I'm sure she won't use the hammer to break the TV, or put the nails in her mouth, because she'll be feeling so proud of that castle she's going to build!

And here's a 3rd and final quote, although I could quote the whole article, really...“I’m a huge fan of technology, but I also think it needs to be balanced with other activities that help promote needed skills. So maybe it’s an hour of computer time in exchange for an hour spent playing outside with a friend.”     This one maybe bothered me the most, because it's almost on.  Yes, the iPad is great, and yes, it needs to used in a balanced way.  But the part about an hour outside playing with a friend?  That almost felt cruel.  First of all, Janey doesn't have friends.  She has school friends, that are her friends because we call them her friends, but she doesn't have friends she could dash outside and play with.  If she did, I would still need to be right next to her, to make sure she didn't run away, or eat random things off the ground.  It sounds idyllic---go outside and play with a friend!  But it's not reality.

The article wouldn't bother me as much if it was only Janey it didn't understand.  I certainly don't expect every piece of parenting advice to apply to Janey.  But I would guess the suggestions there would not work for MOST kids with autism, including not only almost all the low-functioning ones, but most of the high functioning kids, too.  It's a perfect example not getting that autistic kids are not just quirky regular kids, kids we can mildly modify regular advice for.  

Parade Magazine is hugely, widely read.  If you didn't know much about autism, and read this article, you'd, well, still not know much about autism.  Or you'd get a picture of a very small percentage of the autistic kids out there.  You'd wonder what the big deal was.  Get them some good cooperative games, maybe a zip line or tennis lessons, take them to a building workshop at Home Depot, have them read a few books that teach socially appropriate behavior, and they'd be fine!   If the article had even ONCE included a note that not all children with autism could access the toys mentioned, that a good percentage of children with autism are also intellectually disabled and require constant supervision, I'd have been fine with it.  But it didn't.  It addresses the imaginary world of autism, one filled with brilliant, slightly different but at the core just the same as you and me, future so bright you've got to wear shades autistic kids.  I don't have that model.  I have a real life autistic kid, my amazing Janey.  And we'll stick with toys that she actually can use.

Wednesday, April 10, 2013

If you didn't know autism existed, what would it look like?

Yesterday morning, Janey and I stopped at the Rite Aid on the way to school.  Janey needed Cheez-Its, her preferred school snack, so we did a quick before school shop.  The cashier was a teenager who was friendly but seemed, to be frank, a little clueless.  Janey was in her silent mode---very quiet, very slow-moving, like she was walking through sand or something.  The cashier very much wanted to connect with her.  We were getting a heavily discounted chocolate bunny, so she asked Janey "Is that bunny for you?"  Janey of course did not answer at all.  The cashier said "Oh, she's tired!  She looks very tired.  Aren't you tired?"  Normally at this point I'd explain Janey was autistic, but I was tired, even if Janey wasn't really, so I just said nothing.  The cashier wasn't one to give up, though.  She asked Janey "How old are you? Where do you go to school?"  Janey---well, you know---stony silence.  The cashier said "Oh, she's shy!  She's very shy!"  I just smiled and tried to get done with paying.  Then the cashier said "Can you say goodbye to me, sweetie?"  Janey did talk then, but not to say goodbye.  She said in a run-together way, as she talks when she's in the slow mode "openthebunnyyesorno", meaning "Can you open the chocolate bunny right now, YES or NO?"  I said "We'll open it in the car"  The cashier said "Oh, does she get speech therapy?  I used to get that too!  It's okay, sweetie, you can talk to me!"  Janey---no answer.  Finally, as we were walking out, the cashier said "You'll be happier when you get to school and see your friends, won't you?  Have a good day!"

I didn't mind the whole interchange.  It was friendly and much better than staring, or ignoring.  But it got me thinking.  It's a big question in autism----if there ISN'T an autistic epidemic, where were all the autistic kids in the past?  I'm not weighing in on the epidemic or not question---I don't know enough to say.  But I do know that if you don't know what autism is, which in the past, many people did not, you'd approach it like the cashier.  You'd assign it to a category you do understand---tired, shy, in need of speech therapy---and then if those didn't work, most likely, in the past, you'd call it retardation.  To use today's correct term, you'd call it intellectual disability.

We have a whole day now called Autism Awareness Day.  And it's working---most people are aware of autism.  30 or 40 years ago, most people weren't.  But I do think there were plenty of autistic kids then, and kids with Aspergers, and kids with everything in between.  I remember some of them, now, looking back.  My parents do too.  Mostly we remember kids with high functioning autism, because kids like Janey probably weren't too visible.  They were in institutions, or they were kept home, because they weren't welcome in schools.  Even in the small town I grew up in, I was only vaguely aware of a few children that went to the special school in Rockland (strangely enough, called the Henderson School, the same name as Janey's school, although not named for the same person)  They were not much part of the community.

Autism doesn't always show itself clearly.  The Janey the cashier saw yesterday very well could have been a shy child, a tired child.  It's something to keep in mind when trying to figure out this whole autism mystery.

Monday, April 8, 2013

Unfocused Attention

Janey has had quite a few good days in a row lately, knock on wood.  She's been happy more of the time in the past month than I would say almost any month of her life.  It's wonderful.  There are still days with tears, and days like today, where there weren't tears but just quietness---no talking, slow moving, in a world of her own.  But most of the days lately have been happy days.

Of course, I'm trying to figure out what is causing the good days, just like I do with the bad days, so I can try to recreate those conditions.  And I think I have a theory.  It goes back to a day I kept Janey home when it was snowing a lot.  I had worried it would be a disaster, but it was actually a very nice day.  On that day, and a lot since, I've been giving Janey what I think of in my mind as unfocused attention.  That means I'm there with her, but we are both kind of doing our own thing.  For example, I'm doing dishes and listening to music.  She's in the room, dancing around and changing the music now and then.  I talk to her off and on, and I'm right there if she has a request or need, but I'm not right in her face.  I'm not quizzing her, or trying to teach her anything, or trying to make her talk.  We are just together.

Janey constantly asks me to "snuggle on Mama's bed"  I decided about 6 months ago to almost always say yes to this request.  It's one of the few non-food or TV requests she makes.  It doesn't really mean snuggle, but just to be on my bed with her.  She usually has something in her hand, a toy or a book or her iPad or something else to hold, and lately I am bringing a book to read or knitting with me.  I talk to her off and on, we giggle together, we play ghost with blankets, but we both are doing our own thing to some extent.  This kind of time together seems to work better than anything else to get Janey in a calm, happy state.

It's very, very hard to resist a couple temptations that would take away from this time together.  The first is the urge I always have to teach and quiz Janey.  Although it's never shown much of any sign of working in the slightest, I still often try to teach her shapes or colors or letters, or to show her pictures in books and ask her what they are, or to answer my questions.  I am quite convinced, logically, that Janey doesn't learn that way, at least not from me.  At school, I think she does more.  But at home, she doesn't.  She learns from observing, from copying, from seeing something often enough and suddenly getting the spark that makes her want to try it.  But she doesn't learn from drilling.  The other night, we were together in unfocused attention and she had the smile I love more than anything on her face.  She was blissfully happy.  I remembered how that day her ABA specialist had said how well she was identifying pictures of her brothers, and I couldn't resist---I asked her "Who is that boy in there doing homework?  Which brother is he?", pointing in to Freddy.  I was watching her face as I asked that, and I think I'll never forget her look, how it changed.  She went from the smile that would melt any heart to the shut down look.  Her eyes shut down, she stopped smiling, she looked visibly tense.  I saw exactly how it affects her to be quizzed.

The other temptation is to take any moment I can to be totally NOT focused on Janey.  I can only do this, of course, if Tony or one of the boys is watching her.  She can't ever be completely not focused on.  But for years, when Tony was home and able to, I tried to sneak in some time to completely NOT focus on Janey.  Often, this was fine---she was happy with Daddy.  But other times, she was desperate to be with me.  I would get frustrated---couldn't have I have 10 minutes just to myself?  Lately, though, I try to drop whatever I am doing if Janey needs my attention---not if she just wants me to give her some food or put on some show, but if she wants to spend time with me.

I think it took me a while to figure out how to interact with Janey in a way that makes us both happy because I felt I had to make use of every second.  I've read about Floortime, and it got in there someplace in my mind.  I had to challenge her, to complete circles of communication, to do things that got her a little off balance, so she learned!  I didn't stop to look at the results.  Neither of us enjoyed this time, usually.  It's a freeing feeling in a way to have Janey be eight.  I've done my time trying other people's ways.  Now I'm doing what makes Janey happy and calm.  I don't mean I'm allowing her to have anything she wants or do anything she wants.  But our time together is going to be, as much as I can make it, stress-free.  Most of the time, I have faith that if I do this, Janey WILL learn what she is meant to learn.  I look at things she can do now at home, and I didn't teach them to her.  She learned them on her own.  And I don't think she's ever learned a thing while crying hysterically.  She learns when she is calm, when she is happy.  And quite frankly, I am better at parenting when she is calm and happy.  So for now, while it's working, I'm going with unfocused attention.

Sunday, April 7, 2013

The Grocery List

Tony told Janey this afternoon he was going to take her to the grocery store.  She was quite happy, as she loves going to the store.  A few minutes later, she brought us the little notepad Tony uses for grocery lists.  We told her that was great---she had made the connection between the list and shopping.  But then she found a pen and grabbed the pad, and looked like she was going to try writing on it.  That was unusual---at home anyway, she has little interest in drawing or scribbling or any pencil to paper activities.  Then she stopped, put down the pad and started to scream.  She'd been having a banner weekend, and had been cheery for days, so we were startled.  She yelled for a bit, and then said "GREEN CANDY!"  Green candies are those striped round mint hard candies---she loves those.  And we figured it out, or we think we did.  She wanted to put "green candy" on the list.  Tony right away wrote it on the list, and drew a little picture next to the words, and showed it to her, and she seemed a bit calmed down.

The whole episode brought up a lot of questions and emotions in me.  First, did we interpret correctly?  Figuring out what Janey is trying to say is often a puzzle.  Did she just say green candy because she was trying to comfort herself when she was upset, maybe because she wasn't on the way to the store yet?  I guess I'm a natural skeptic, but I often default to assuming Janey isn't meaning to convey the more complex meanings that some of her actions could be interpreted as.  But assuming she was wanting to write green candy on the list---well, that's a little heartbreaking.  It would mark the first time we were aware of her being aware of her own disabilities.  She knew that people can write things down---the kids in her class write all the time.  And she knew that Tony wrote things on that paper to remind him to get them at the store.  So she got the notepad and then, boom, it hit her.  She couldn't write.  She had no idea how to put green candy on the list.  And that would be a sad moment for anyone.

Or I could do as I would like to do more often---see this as an opening, see it as a good thing.  She was making a cognitive breakthrough---getting what writing is all about.  That's a much cheerier way to look at it.   But it would be more cheery if I felt she was within any kind of reach of being able to write.  She has very few even prewriting skills.  Once in a while, she can make a J, or try at a circle or line, but that has taken years and years to get to, and it's pretty hit or miss.  I should, if I were being less of a negative person, think about technology---how she could use her iPad to make a list, how we could take a picture of the green candies and use them to start teaching more more iPad communication.  But she has shown huge resistance to any attempts at that.  Her calm, happy state lately has come about partly because of my realization about how much she gets stressed by my attempts to teach her---I'm going to write about that soon.  She is much more willing to learn at school, but even there, it's slow, slow going.

So I'll say honestly my main feeling today at her frustration was sadness, because she was sad, and because it seemed like she realized what she couldn't do.  Tony and I talked about how we had almost hoped that day would never come---the day when she realized she was different than other kids, and couldn't do the things other kids can do.  And it might not ever come fully, but today felt like a little bit of that knowledge had hit her, and it's hard to for me to see that, and I am sure, harder for Janey to feel it.

Wednesday, April 3, 2013

Games with Janey

One of the challenges with Janey is finding ways to play with her.  Playing keeps her engaged, and it gives us a chance to work on turn taking, speech, imagination---and most importantly, I want her to have fun!  But like a lot of things I try to do with Janey, it's easier said than done.  Actual, structured games like board games are beyond Janey.  Often I resort to baby type games with her, like patty cake or Here We Go To Boston or even basic peek-a-boo.  But Janey's not a baby, and although she enjoys those games, they don't have a lot of scope for expansion.  Imaginative play doesn't really work.  Janey doesn't get it, and since doing real things like using the phone are not something she can do, pretending to use the phone or pretending to put a baby to bed or so on are not fun for her.  If you don't get what you are pretending, it's hard to pretend.

There's a few things that work.  One is playing catch.  Janey loves to catch and throw balls.  She's no expert, and she misses most of the time when catching, but that doesn't bother her.  She's not that bad at throwing!  I crocheted a ball out of yarn and stuffed it, for safe in the house play, and the other weekend all 5 of us had a very good time tossing it around.  We play with balloons sometimes too, and kick a ball around outside on occasion.  Another favorite of Janey's is one she plays mostly with Freddy---the "I'm going to get you!" game.  He chases her around yelling "I'm going to get you!" and then catches up with her and grabs her shoulder and says "I got you!"  She screams in excitement and then runs off again, turning around now and then to say "I'm going to get you!" to spur Freddy on.

The cats provide us with a lot of entertainment, and I am really pleased that lately Janey seems to notice them a lot more.  She likes gently patting them, and she LOVES the game where I pretend they should be able to talk.  When I tell them to say hi to her, she laughs and laughs.  I think on some level she gets it---cats can't talk, but I'm telling them to talk!  She probably relates to that quite a bit.  And I can get out a little frustration with what I say to the cats "Now, come on, Ash!  You could at least say 'Hi' to Janey!  Be polite and say hi to her!"  The cats never do, so we settle for them giving Janey a high five.  That game can keep her happy for long, long periods, until the cats get fed up and leave.

Last night we had a long round of another of her favorites---Ghost.  This means just putting a blanket over her head or mine and saying we are a ghost.  It actually allows a lot of work on skills.  I can ask Janey if she wants to be the ghost next or if she wants me to, I can give her ideas what to say as a ghost (mostly OOOOOOOO, but we mix it up a little with some "I've come to haunt you!" and so on), we can work on pretend and real when I pretend I really think Janey is a ghost, and then she takes a blanket off and I made a big deal of being relieved it's just my sweet Janey.  We can easily involve other people by going in to scare Freddy or William while they do homework.  And I can introduce words---last night we worked on "double" and "two" by being a double ghost together---the scariest kind of ghost of all, I used to always say when the boys were a double ghost to scare me, back in the day!

As fun as the few games Janey get into can be, it's also frustrating work to play with her.  She never introduces new twists on her own.  She'd be happy if I just played peek-a-boo with her for hours on end.  I have to be very careful to try to vary what I say during games, or it becomes a fixed piece of echolalia forever associated with that game, and she gets upset if I don't say the right thing.  And perhaps the hardest part is that Janey rarely seeks out playing.  She'd  probably frankly be happier if I just mostly left her alone to watch a video or bite on a biteable toy.  It can start to feel like a one-man show playing with her after a short time.  But I do have to believe it's valuable time.  Even if she learns nothing from playing, if she's enjoying herself and enjoying my company for a few minutes, that's a plus.  That's what we want our kids to have as part of their childhood---happy interactions with their parents stored somewhere in the memory banks.  I hope Janey's brain has a place with that kind of memory.

Tuesday, April 2, 2013

Janey Awareness, Autism Awareness

Today is International Autism Awareness Day.  I've said in the past I think I'm about as aware of autism as a person can be, but that's not really true.  I am aware of the way autism affects one little girl, and one family.  Autism is a huge spectrum.  There's the saying that has gotten to be a little cliched, but it's true---if you know one kid with autism, you know one kid with autism.  I had been thinking of writing in general about autism and what I'd like the public to be aware of, but I realized I'm not the expert in that.  I'm the expert on only one child with autism.  So here it is, my "Janey Awareness List"

1.  Janey is eight years old.  She's my third child, my first girl, the girl my husband Tony and I longed for.  She was born on her brother Freddy's seventh birthday.  Although she had some quirkiness from birth, she appeared to be basically normally developing until a bit before her third birthday, when she regressed severely.  She was diagnosed at age 3 years, 3 months with autism.

2.  Janey has low functioning autism.  She, like many children with autism, is intellectually disabled.  Although her skills are a little scattered, in general, she functions like a child of about 2.  She speaks, but around 98% of what she says is either simple requests ("I want Kipper, I want green candy, I want snuggle on Mama's bed") or echolalia, delayed or direct (repeated phrases from videos, books, past conversations, etc)  She says very little that is original or communicative beyond requesting.  She knows some letters and some numbers, inconsistently, some shapes, she can sometimes write a J and is working on the rest of her name, she can name single objects she knows when she's in the mood.  Learning this much academically has taken her 6 years of school (preschool through second grade, where she is now)

3.  Our lives are hugely, extremely impacted by Janey.  She literally cannot ever be unsupervised, not for even seconds.  She has the impulsive nature and lack of safety concerns of your typical 2 years old, in a fairly tall 8 year old's body, and she's pretty good with physical things like climbing and opening.  Someone must always be assigned to watching Janey, ALWAYS.  That means even if you have to leave the room for a very short time, like to run to the bathroom or check the mail.  Otherwise, Janey will put herself in dangerous situations or do things like pour liquids on the floor, or worse.

4.  Because of Janey's lack of ability to communicate and her swings in emotion, she can become very, very upset for long periods of time.  We have had stretches of days on end where Janey cried without stopping, all day, crying really being a mild word for what she did---more like screaming hysterically.  There are other days she laughs for hours on end, and wakes manically in the night still laughing.

5.  Janey attends an inclusion school, the William W. Henderson Inclusion School.  She is in a classroom with kids that are typically developing and with a few other kids with various special needs.  There are 2 teachers and an aide in the classroom, and Janey is also supported by a lot of specialists like physical therapists, occupational therapists, speech therapists, music therapists, an ABA specialist---it takes a full staff to education a Janey!  We love Janey's school, and are very lucky she is there.

6.  We don't know what caused Janey's autism, although I have plenty of theories.  I don't really believe in autism cures.  I don't have a fixed autism policy, belief or style.  I believe in doing a hodgepodge of whatever works.  Janey is on no special diets, takes no special vitamins.  I am not saying that those diets or supplements might not work for other kids, but we haven't chosen to go that route.

7.  Janey loves music.  She knows hundreds of songs by heart, and if the spirit moves her, she can sing them in tunes with the full lyrics, but not on command!  Listening to music with Janey is my favorite way to bond with her.  We listen to a huge variety of songs on the iPod in the car, and when Janey likes one, she asks to re-hear it, and I add it to her list, which she knows how to access when I put the iPod on a base at home.  She especially likes country gospel music (although our family is not very religious!), bluegrass, Weird Al, and most of all, Christmas music.  She sometimes is intensely bothered by certain songs, and it could be those are sung out of tune---I'm not really musical enough to know!

8.  One of the hardest parts of autism for me is the stares in public.  If I could make the general, autism-unaware public aware of one thing, it would be how hard the stares are.  If you see a child acting unusually, maybe making odd sounds or jumping up and down or crying when there doesn't seem to be a reason, or just acting much younger than they are, please try hard not to stare!  I never mind people making eye contact with me and smiling, just to let me know they see us and are supportive, but please don't just look at us like we are a sideshow!

9.  If you are interested in helping autistic kids and their families, my personal wish would be that you volunteer or give money or whatever to organizations providing direct support, direct services.  That means people that are working directly with autistic kids---giving the parents a break, giving the children opportunities for recreation, providing afterschool programs, camps, parties, things like that.  Just because an organization has "autism" in its name, that doesn't mean they work directly to help kids with autism who are living here and now.  They might support one very specific type of autism therapy they believe in, or they might give money for research.  I'm not knocking those things, but there are many families out there desperate for help RIGHT NOW.  They already have the kids with autism, and knowing what caused it or working for some long term "cure" is not going to get them through the day.  I speak from experience.  I am very lucky that Janey can attend afterschool and summer school.  I'm not sure how I'd survive otherwise, frankly.  Even with that, vacations and weekends can be brutal.  I'd do anything in the world for Janey, but there are times that her needs overwhelm our family.  I worry about families with single parents, or more than one autistic child, or less school time.  I worry about them very much.

10.  Janey is an amazing person.  I love her very, very much.  That being said, life with autism is tough.  It's tough for her, it's tough for our family.  Those are the two big points I'd like to emphasize in the end, I guess----that children with autism are people, beloved family members, children that are as precious to their families as any child, but that doesn't change the fact that raising an autistic child is extremely, overwhelmingly, unbelievably tough.  Or, to get back to my Janey-centered approach, I love Janey more than I could have ever imagined, and she is tougher than I ever imagined a child could be.

I'll end with a shout out to every family out there raising their own autistic child.  Here's to all of you.  I'm raising a toast in your honor.  Cheers, and my love.