I hate old videos

We are not big video-making people.  We haven't consistently documented any of our kids' lives, but we've done a few video taping sessions here and there.

We did a fair amount the year Janey was two.  Or I remember us doing a fair amount, and I've seen them around.  But I don't watch them.  I watched a bit of one, once.  I started to scream, watching it, and begged Tony to turn it off, which he did.  It was Janey, pre-regression.  She was talking.  Talking as well as any two year old talks, better than some.  There were slight oddities to her talking, but it was talking, fluid talking.  Her eyes were engaged, she was lively and cheerful.  She was pretending to be the singer in a band the boys were making, and if I can recall, she said something like "This is Janey and the Amazing Band!"  Not echolalia.  Regular, creative talking.

This morning, Tony was looking at an old private group he'd created on Facebook, one to keep track of Janey's health issues.  At one point, he'd uploaded some videos of Janey onto it.  They weren't dated, but I would guess she was 6 or 7 in the video I watched this morning.

What I knew, from reading old blog posts and from what I can remember, is that after her big regression at age 3, Janey's talking at one point recovered slightly.  It was in no way up to age level, and I think I'd convinced myself it was about like it is now.  The video showed me I was wrong about that.

The video starts with Tony filming our cats (we had more then---four of them).  Then Janey walks in the room.  She is carrying a frozen pizza.  She says "Want some pizza?  Open it!  I want pizza!"  She sets down the pizza and repeats that, and uses sign language a bit, or her own version, pointing to herself and then opening her hands to show "open"  I say "But what is the magic word if you want something?"  She repeats "pizza!" and then I start it for her---"Ple....." and she says "Please!"  Then, I say "Okay, I'll make pizza, but first, can you say your name for the video?"  She says something I can't understand at first, but then says "I want a banana milkshake!"  I sometimes call her Banana Pancakes or Banana Milkshake as a nickname---no idea why, but I still do.

It isn't just the talking in this video that's far more fluid and easy to elicit than it is now, it's her whole demeanor.  She is more relaxed, more engaged, more lively than I've seen her in the last 3 or 4 years.  She is, to put it plainly and in terms that I hope don't offend anyone, closer to typical, closer to what we call normal.

I fool myself a lot, or pick what I want to think about, or to be easier on myself, simply don't think about things a lot.  I know in my heart Janey's talking is decreasing over the years.  She talks less now than a year ago, much less than maybe 5 years ago.

She is not losing ground in other areas.  She understand more all the time, from what she can show us.  She is able to do more for herself.  She is calmer, mostly (although we had a rough weekend at points, and if I am again brutally honest with myself, we have a lot of rough weekends)  But she is more affected outwardly by her autism than she used to be---I have to admit that.  And it's okay.  It's truly okay.

The latest thing that parents who blog about autism often seem to be called is "martyr parents".  That hurts.  I don't ever, ever, ever want to seem like a martyr.  And I don't feel like one, I don't think I am one, even if I dig into the depths of my soul.  It is my great privilege to be Janey's mother.  I love her more than I can possibly state.  But that love includes wanting her to be able to express herself, to be engaged in life, to be open and able to enjoy what life has to offer.  I can't see her decreased talking, and more than that, her decreased engagement in others, as a positive.

Should I make myself watch old videos, to force myself to see what I don't want to see?  What good does it do?  I don't think that anything I can do, or the schools can do, changes Janey much.  Or that is wrong---what we CAN change at times, and I think we have, is how accepted she feels, how much of her time is spend screaming or crying or otherwise unhappy.  That is less than it was  in the past, for the most part.  But despite many, many years of speech therapy and ABA therapy and excellent teachers and aides and therapists and a family that does whatever we can to help her communicate---as the years go by, Janey talks less and less.  There are moments that stand out, great things she says, but I would say this weekend she said a total of about 5 different phrases.  There was "want to go for a car ride?", "want to snuggle on Mama's bed?"  "want a TV show?", "want a shower?" and "want shoes on?"  She did not answer any questions.  She did not label anything, or comment on anything, or say anything we haven't already heard many times.  This weekend was pretty typical.

I hate old videos.  I hate feeling like somewhere along the way, not just once but at least twice and probably more times, Janey lost ground she had gained.  I think I'll wait another decade or so before watching old videos again.

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.

Tougher, the same as and better

Janey will be 11 soon, and I've been reflecting on what 11 is like for typical kids, what 11 was like for me.  It's not the easiest age for any girl, I don't think.  It's typically the start of middle school years, around the start of puberty and of girl on girl meanness and on starting to notice boys, the age of questioning your parents and figuring out who you are.  I think a lot about ways that life with Janey is, all at the same time, tougher and the same as and better than with most almost 11 girls.

The tougher part is quite obvious, of course.  It's a lot of what I write about.  It's tough to have a girl her age who isn't usefully toilet-trained, who is minimally verbal, who has no academic skills, who screams and bites herself when she's upset.  It's terrifying, as we found out, to have a child who can't tell you the most basic things that are wrong physically---who can have a burst appendix for days that even doctors at a top notch hospital can't easily detect.  It's sad to not ever really know what Janey's life at school is like.  It's very hard that she doesn't have friends.  It's heartbreaking that her future is not going to include marriage or a career or children.  All that is, putting it mildly, tough.

Some parts of Janey at this age are really not that different than having any almost 11 girl.  That hit me this past weekend at the beach.  Janey loves the beach, and she ran in and out of the waves and picked up shells and just had fun in a way that was truly not that different than anyone else her age.  Of course we had to keep an eye on her, but we would be keeping an eye on a typical girl that age in a public place.  Her enjoyment of the beach was not because of her autism, or despite her autism---it was just enjoyment.  When we all sit down to eat Chinese food or pizza, she is no different than any sister in a three kid family.  She grabs her share and we all gobble down.  There are moments when I look at the three kids in the back of the car and think "There's my family!" and don't think for a minute about the autism.  That might not seem like a big deal to most people, but it's a wonderful kind of ordinariness to me.

And there are the parts of Janey at this age that are better than what I think life would be like with a typical almost 11.  Yesterday after school, I put on some Beatles while I did dishes.  Janey was in the kitchen with me, and she delighted in the music.  She delighted to such an extent that she was truly in a state of bliss.  We listened together to "In My Life" 5 times, as she kept hitting repeat, and as tears came to my eyes, she hugged me over and over.  Then we danced to "Birthday", the theme song of her shared birthday with Freddy.  I thought about this birthday to come, when my baby will be 11 and her brother Fred will be a legal adult, 18.  I thought of the moments of joy with Janey, and how she will in some ways always be my sweet little girl.  The joy with Janey is pure and overwhelming when it happens.  Those are the moments that keep us going.

Randomly selected moments with Janey

Of course I probably can't really be random with my selections, but I thought I'd write about some everyday moments in life with Janey, just to try to capture who she is right now.

1.  We are all taking a ride to get Freddy things he needs for school.  There's a black car coming out of the parking lot near the police station.  We are trying to figure out if it's a police car or a limo.  Janey pipes in "It is a police car!"  We are all surprised and pleased, as it's quite rare for her to join in a conversation like that.

2.  Janey wakes me up in the middle of the night.  She lies down next to me, and I try to go back to sleep.  She says "You want to take a shower?"  I say no, not right now.  She asks a few more times, with the same answer.  Then she says "You want to see the shower curtain?"  I put up a new curtain, the day before, with owls on it.  Pleased that she noticed, I do get up so we can go see it.  She immediately takes over the whole bed.  I've been fooled again by her sneaky nighttime tricks.  I go to sleep in her bed, until she decided to switch beds again.

3.  Janey is watching "The Little Mermaid".  She's been asking for it all weekend, and we've been telling her she can't watch it because she pulled out the tape.  Finally, Tony decides to try to fix it, and is successful.  She is thrilled to see it, until the scene where Ariel's father yells at her.  When that comes on, Janey smashes against the TV with her fist, a recent behavior that she knows will result in the TV being unplugged.  I am watching her as she does it, and I can see in her face she realizes her mistake a second after punching, and she screams in frustration.  The TV is unplugged anyway.

4.  I wake up Saturday morning after having a nice night's sleep.  Janey has been up a while already, having her favorite type of weekend breakfast with Daddy, various greens with olive oil and hot sauce.  When she sees me, she dashes over and gives me a big hug and smile.

5.  We are coming back in the car from being out visiting William.  It's later than Janey usually stays up, about 9 pm.  She has been fairly cheerful, but suddenly and without warning, she lunges at Freddy, who is sitting next to her in the back seat.  She tries to pull his hair.  He grabs her hands to keep her from doing so, and she bites at them.  Freddy manages to keep her from hurting him much, but it's a struggle for the 10 minutes until we get home, completely with her screaming.  We offer to stop, to have me sit in back with her, but Freddy declines.  He's gotten used to such scenes over the years.  I cry in the front seat.

6.  I put on "Olivia", which we have in streaming video from our Amazon account.  Janey hasn't seen it for years, but she is instantly taken with it.  She watches the whole episode, and then deftly navigates the user-unfriendly interface to put on the next episode.  Over the weekend, she watches eight episodes---eight different ones, not the same one obsessively eight times.

7.  I am dressing Janey for school.  She is tired and annoyed, and kicks me in the stomach.  I am too tired, bone tired, to get upset.  I just say "You can't do that.  We have to get dressed".  She becomes instantly cooperative.  She keeps looking at me with a worried look, as if she expects to hear more about the kick.  When I am done dressing her, she kisses me, which she almost never does.

8.  Another morning getting ready for school.  Janey is in another bad mood.  We managed to get dressed, but she is crying and screaming.  She goes over and gets the hairbrush and hands it to me, while saying "Don't brush your own hair!  Don't brush your own hair!", which is what she says when she's upset I'm brushing.  I brush quickly, to get it over with, without counting out twenty brushes, as I usually do.  When I stop, Janey screams and hands me back the brush, yelling "Thirteen!  Fourteen!"  That is right where I left off in my silent counting.  I brush up to twenty, as she screams.

9.  Another middle of the night.  Janey wakes me up and saying "Chinese rice!"  I tell her we don't get takeout in the night.  She considers that a moment, and then says "Pizza!"  I repeat myself.  She is undaunted..."Happy Meal!  Chicken nuggets!  Fries!  Chocolate Milk!  Toy!"

10.  Janey gets off the bus and her Auntie Rose is just arriving at our house.  She hugs her aunt, thrilled to see her.  Auntie Rose goes upstairs to help my brother-in-law in his apartment.  Janey has her snack downstairs with me, and then says "Go see Nana and Grandpa!"  I tell her they are far away right now, although I suspect what she really means.  She thinks a minute and says "Go see Auntie Carrie!"  I tell her Auntie Carrie is even further away, in Colorado.  I ask her "Do you mean Auntie Rose?" and she smiles a huge smile and says "GO SEE AUNTIE ROSE!"  So we do.

Everyday life with Janey is hundreds and thousands of moments like these.

The importance of consistency

Lately, a lot of things at both school and home are coming together to pound a lesson into my head---BE CONSISTENT!  Of course, I know intellectually that is very important for all kids, and especially for kids with autism, but sometimes, it's easy to let it slide, and the universe seems to be wanting me to remember not to do that.  Last night, for example...

Part of last night was not in any way my doing.  It was the doing of the electric company.  For some reason, our particular stretch of the street we live on seems hugely prone to outages.  I think it's where a lot of lines branch out of, or something like that, because we lose power far more often than anyone I know.  Over the summer, it got insane---days and days and day on end we'd be without power for much of the day and night.  Then the electric company would robo-call us and tell us they were going to turn off our power for a specific length of time to make repairs, repairs you would always hope would fix the problem for good, but never did.  Then we had a few months of respite, but that seems over.  Night before last, the power was out most of the night, on a cold night (but not stormy---this isn't weather related!) and last night around 5 pm, it went off again.  So when Janey got home, there was no power.

No power right away sent Janey into a very dark place, literally.  She couldn't do her switching on and off of lights, she couldn't watch her videos, she couldn't listen to her music, she couldn't get her dinner quickly---not good.  But she held it together at first.  Tony went out to get us an emergency pizza dinner, and Freddy and I sang with Janey.  When Tony got home with the pizza, the power suddenly came back on.  So we tried to do our regular take-out routine---watching a DVD while we ate.  It's the one time we don't give into Janey and let her watch what she wants.  But Janey's chain of routine had already been broken.  She didn't get to watch Daddy make dinner right when she got home, she didn't get to do the lights, she didn't get to switch around Netflix show.  We didn't even get pizza from the normal place, and she didn't want to eat it.  She wanted to watch Kipper.  We stood our group in a misguided attempt to follow our OWN brand of consistency.  That might have its place, but Janey's needs were more than ours right then.

Before the end of dinner, Janey started screaming.  I've described her screams before, but yet again I want to emphasize how extreme they are, and they were at almost their most extreme last night.  She goes rigid, red in the place, and doesn't hold back one ounce of lung power.  She screams so loudly it makes your ears ring.  It's absolutely incredibly loud and horrible to see.

And here's where I made probably my biggest mistake of the night.  We have worked out a routine that works fairly well for screaming.  I take Janey into the bathroom.  I lock the latch hook up high, so she can see it.  I stay in there with her.  I don't tell her to stop screaming.  I just say, calmly, that we are going to stay in the "screaming room" until she stops screaming.  I am available to hug her or talk to her or whatever she needs, but I don't open that door until she stops screaming.  Then I say "we can leave if you are ready to not scream any more.  Are you all done screaming?" I wait for her to say "All done screaming!" and then we leave.  If she screams again, we go back, but lately, once is all it takes.

But last night, I belatedly realized how hard the night had been on her, and then decided, foolishly, that because everything had been so tough, I would just try to calm her down by hugging her and talking to her.  It didn't work.  It didn't work for about 10 long, long minutes, the kind of minutes where time extends and it feels like 10 years.  Finally, I wised up.  I led her into the screaming room and did the routine.  Within about a minute, she calmed down and asked me to "open the door!" When asked, she said "All done screaming" and she was.  And I then carefully let the night follow her routines.  She watched a little Kipper, switched the lights a lot, and went to sleep.

My point here is that not following a consistent routine can feel, to the parent or caregiver, like being nice.  I didn't want to do the screaming room because I knew Janey had had a tough night.  I wanted to comfort her, to make an exception.  But that wasn't what Janey needed.  She needed the predictability of a routine that she understood.  She needed to know that things were not all changed, that our actions were predictable.  I can't be inside her head, but I think it's a confusing place.  I think she very much needs things to hold onto---come home, watch Daddy cook, watch a video, flip the lights, hear her dog book, and yes, go in the screaming room if she is screaming.  She needs school to follow routines like that, to have predictable responses and teaching methods and routines.  She needs as much consistency as we can give her.  Sometimes, it's beyond our power, like the lights being out.  But when it isn't, we need to be there to provide a predictable, routine-oriented scaffold so she can grow.