It's all stored up there somewhere!

A week or so ago, Janey woke up saying "You want your Bruno dog?"  Translated, this means she wanted Bruno.  Bruno is her cousin Zeben's dog.  She last saw Bruno about 2 years ago.  When he was here, she paid almost no attention to him.  She wasn't scared of him---he's littler than our cats---but she wasn't interested in him at all.  I never heard her say his name, and I had no idea she ever knew it.  She hasn't talked about him in the past years, and we haven't talked about him more than in passing.  Yet somehow, his name was stored in her mind, and something made her suddenly want him.

I've realized more and more that almost everything Janey hears, sees or experiences is stored in her memory.  We might not known it, there might not be any way to readily get her to let us know she can access those memories, but it's all there.

Thinking of that, I've been thinking how important it is to keep giving Janey new experiences, new things to learn, even when it's hard doing so.  I'm thinking of my trip to Maine.  The sleep issues and the screaming made parts of it tough, but Janey experienced a whole, whole lot in a few days.  She got to spend extended time with her grandparents, she got to climb rocks and see alpacas and go to a fair and sleep in a travel trailer.  All that is in her head, somewhere.  It's not lost.  Some day, when I'm least expecting it, a bit of it will be spoken of by  her, or she'll do something that shows me she learned from all we did.

A few more examples I saw today----Janey saw two of our cats sleeping, and said "Tommy and Ash!"  She's said Tommy before, but none of us had any idea she knew Ash's name.  He's the shy cat, and she has never before referred to him.  Later, she was having a good loud scream.  I was using my most recent strategy, which is making sure she isn't hurting herself or in the position to hurt anyone else, and then just saying "I see you are screaming.  Tell Mama if I can help you" and then just waiting it out.  I don't think Janey likes that strategy much, but it seems to work as well as any.  However, today, she said "Want to go to the screaming bathroom?"  I wrote here---link---about the Screaming Room, another screaming strategy I'd tried in the past with Janey.  It involves going into the bathroom with her and staying there with her until she stops screaming.  I'd given up on in a few months ago, but I'm going to give it another try, if that is what she is asking for.  It was the first time I remember her asking for a specific way to help with her difficult behaviors.

One of the hardest things for me about autism is the lack of feedback from Janey.  It can feel sometimes for days like I am talking to myself, like I am trying so hard to help Janey and nothing is getting through in the slightest.  But that isn't true.  I need to remember that.  Janey is learning all the time, and I love the rare times she lets me know that.

It's the middle of the night; I'm a little fed up and I need sleep now

Janey has been up for two hours, after going to sleep grouchy about 9.  It's not a lot of fun.  Tony is currently trying, as I write, to get her to sleep, and I am trying to not project, to not think about how tired I will be tomorrow, to not think about how this might be the start of a hellish cycle, to not think about the many years ahead that right now stretch out endlessly, full of sleepless nights and frustration.

Janey has been making a long string of requests posed as questions---

Do you want me to get you an onion?

Do you want me to turn on the light?

Do you want me to pour you soda?

Do you want me to watch Kipper?

It's pronoun reversal middle of the night autism demonstration time.  We answer no to all, without bothering to try to correct the format of the speech.  It's not the time to worry about semantics.  

Janey is jumping up and down and reciting a favorite Kermit dialogue, Kermit arguing with the Count about what an elevator operator is supposed to do---"You're SUPPOSED to take people to whatever floor they want to go to, and I WANT TO GO TO THE SEVENTH FLOOR!"  She laughs hysterically, and recites it again.  After the 10th time or so, it seems kind of funny to me too, in an crazy sleep deprived way.

We try reasoning with her, which is useless.  We try bargaining with her "If you will stay on the bed, you can play with your iPad.  If we get you water, will you sleep?"  She agrees to anything, but it's meaningless.  These are not binding contracts, and she knows it.

My grass pollen allergies, delayed by the cool weather, have chosen tonight to kick in full gear.  I am sneezing and sneezing, each time causing Janey to recite something funny she heard one time---"A-shoe, A-sandal, A-sneaker!"  She cracks herself up every time.

I send an email to cancel plans I had for tomorrow.  It will be a napping day.  I wonder as I often do how Tony makes it through the day.  I wish he'd call in sick sometimes when he doesn't sleep.  I worry about what all this sleep deprivation does to him.  Isn't that what they do to torture people?  In the night, in my own state, it becomes a scary concern.  Thoughts get dark when you are tired and can't sleep.

The least affected by all of this is Janey.  She never seems tired the day after this kind of sleepless night.  Her system doesn't seem to work that way.  She doesn't even sleep late the next morning, usually.  She's up at the regular time, ready to rock and roll.

I am trying to keep positive.  I am going over in my mind all the other sleepless mothers out there, and the ones in far worse positions than me---awake in a hospital watching a sick child, awake worrying about a child that hasn't come home, awake because they don't have a bed.  But sometimes, the contrary part of me thinks about all the people that have it easier instead.  That's not useful.  I think about articles I read where a parent is freaking out over bad grades, a sassy mouth, not eating vegetables.  I wonder if they realize what a miracle they have---a child than can talk, can understand, a child with a bright future.  Sometimes late in the night I don't think nice thoughts about those parents, even though I am those parents, with two sons that have bright futures.  

Janey is still awake.  She is still jumping.  So I will think about the parents I know must be out there right now, staying awake with their own autistic child.  Parents living my same life.  I wish I could talk to them, right now.  That we could all feel less alone in our own houses, getting through our own nights.  I hope we can all help each other make it through the nights.

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.

Autism speech, or Janey's speech, anyway!

"You say you want to take my socks on, please"

Janey said that to me last night, as she was falling asleep.  It's a pretty typical line from her, but for some reason I thought about it a lot as I too fell asleep.  It has a lot of the elements of her language in it---a lot of what I'd like to figure out about her.

"You say"  --  Janey has started using that at the beginning of a lot of utterances.  It's a little piece of echolalia, from people telling her what to say.  For example, when she's screaming her head off, we might say "You say 'I feel sad!'"  Or if she's supposed to say hi to someone, "You say 'Hi, Maryellen!'"  Mr. Ken, Janey's ABA specialist, has worked on that, by just having us say what we want her to say without the instruction---if we want her to say hi to someone, WE say hi to that person, and then kind of gesture to Janey to follow.  He's very good at getting that to work---me, not as much.  But sometimes it's hard to implement.  When Janey is crying and I say "I feel sad!", it's understandable if she sees that as a statement about myself (and usually I AM sad, if she is)  Whatever the reasons, I think Janey has decided that "You say" is a handy way to start a sentence.

"You want"  ---  And there's the classic pronoun reversal!  I've read that it's very, very common in autism, and very hard to find a way to stop.  One place I read said they really don't understand how typical kids DON'T reverse their pronouns.  How do they learn that when someone says "I", they are talking about themselves, and that it's not just a way to refer to that person?  If Janey is asked "Do you want bacon?", it seems to make sense for her to say "You want bacon" to mean "I want bacon".  Janey doesn't always reverse her pronouns, and it seems a little random when she does and doesn't. But she often does, and I have no idea how to work on that.

"to take my socks on"  ---  That's Janey's other reversal, and not one I've heard is part of autism.  She says the opposite of what she wants a lot of times.  She wanted her socks OFF, so she says to take them ON.  That's a rare thing I remember from her pre-autism speech.  When she was two or so, she always said "Pick me down!" when she wanted to be picked up.  It's like she takes the state she's in, that she doesn't want to be in, and says that.  So we get "buckle me out!" when she wants her seat belt on, "put the TV off!" when she wants it on, "Turn off the light!" when she wants it on, and "Put on my pull-up!" when she wants it off.  It would be harder to figure out if it was not usually evident what she really means, but I still wish I could figure out how to have her clarify those statements.

"please"  -- Now there's a nice one.  Janey has gotten wonderful at saying please.  Most everything she says is a request, so please usually fits in there someplace.  She's even learned how to say it in a pleasing way, in a very sweet voice.  However, like everything with her, there's a catch.  We sometimes call please the magic word, and she believes that literally, I think.  If you say "please" nicely, anything can happen!  There can suddenly be bacon when there wasn't any bacon in the house before, we can go for a ride in the car at 3 am instead of sleeping, I can stop my foolish insistence on brushing hair if she asks nicely enough---it's a magical word indeed!  Her use of please is also delayed echolalia at work.  She's heard it enough, so it automatically gets put in there.

I love it that Janey can talk.  A lot of kids with her level of autism and intellectual disability can't, and there was a time right after her regression, for a few months, when we thought she was losing all speech.  Her speech, however, is deceptive.  Almost all of it is like the example here---a pieced together and echolalia filled and odd way to make a request.  But I'll take it.  I know I am lucky to be able to hear her voice.

Does it get easier?

Lately, I've told a few people with young autistic kids that it gets easier.  I've always thought the hardest age is around 4, and from that point on, it gradually does seem not quite as tough.  However, I don't like to tell people falsehoods, and I spent a long time  yesterday trying to figure out in my mind----Does it really get easier?

In giving my answer, of course I need to say I have only my own experiences to go by.  Janey is not typical, even with the autism world, I don't think.  No child is typical, but Janey has not really followed even the autism guidelines.  She has not "improved" significantly since she was diagnosed, in terms of speech or academics.  She is on the low end of the spectrum, so that has been my experience.  My other child originally diagnosed with autism is also not typical, as I think he was a wrong diagnosis, but if he wasn't, his improvement is far beyond what you'd usually see, in that he hasn't been on an IEP since 5th grade and will graduate this June with an over 4.0 GPA.  So maybe I am not the person to ask if it gets better, but I will answer anyway!

And my answer is yes, but not for the reasons you might think.  I don't think it gets easier because the child themself gets easier.  I think that's what I used to think, and of course they do, in a lot of ways, maybe more for other people than me, but they do.  But what really makes it easier is that you settle into your life, you find the right situations for your child, you change your definition of "easy."  It feels easier, although it might not, from some unreal strictly mathematical viewpoint, it might not be.

You settle into the life.  When a child is first diagnosed, it seems like an acute illness.  You feel like you have to do something NOW (and the media and some of the autism community feeds into this).  You feel there is not a moment to waste.  You are rushing around, finding a program, setting up appointments, finding a school, making big decisions.  It's hectic and scary.  Then you are transitioning into all the programs you set up, and anyone knows most autistic kids don't like new places or new experiences.  It's a confusing, scary, terrible time.  But jump from that age, around 2-4, to age 8, where Janey is now.  Unless you've been extremely unlucky, your child is in a school you like.  You've settled on an approach to the autism, you've met other families hopefully, you are an old pro.  Your life is not as hectic, and your child is not starting some new program every other day.  It's the comfort of routine.

The other part is a little harder to think about.  But I think it gets easier because you start expecting less from your life.  Nobody wants to think this.  We don't want to think that our child with autism is going to change our whole life, but like it or not, they will.  When you make the jump from first diagnosed to around age 8, you have already changed your life.  You no longer expect things to go smoothly, and when they do, it feels wonderful.  You have probably pared down your friend list to those who at least try to "get it", so you aren't dealing with people who are unwilling to accept your new reality as much.  You have changed your hobbies and cooking and work life and every other part of your life to accommodate your child.  It's the new normal. And when a day goes well under the new normal, you feel good about it.  You delight in little things that in the past would have gone unnoticed---drinking a full cup of coffee uninterrupted, the delightful 90 minutes a video takes to play out when you get to read a book, your child saying something new or not reversing pronouns or getting half dressed by themselves or using the potty.  Littler things can make you thrilled.  I'm not being a Pollyanna here.  I've read that after hugely good or bad fortune in a life, most people eventually return to the same level of happiness as before the fortune, and I think that's true.  You start to have a normal life again---a new normal, hugely modified, but it doesn't feel that way.  It just feels like life, most of the time.

So yes, I think it does get easier.  Or at least it FEELS easier.  And that's about the same thing, really.

Holding my breath

I haven't written in a few days, because of my extreme fear of jinxing things. The last 5 days or so have been pretty good! Janey hasn't been screaming or crying much at all. I think the higher dose of the medication is working, or something is working. She just seems happier. When she starts to get upset, it's much easier to get her back and calm her down. It's so wonderful to have a day without extended crying times. Along with the medicine, it might also be partly just adjustments we have made. I'm backing off some on taking her out many places---I think she needs some time mostly at home, very predictable routines. Not totally, but a lot of the day very low key. My parents were here yesterday and got to see a calm Janey! (and hear our stories about the awful time a few weeks ago) We went to see my friend Fab a few days ago and Janey was happy almost the whole time, and saw my friend Amy a bit ago also and had a very good time, and got to see Janey playing with her daughter, and actually talking back and forth a bit (with her confusing reversed pronouns---they were playing with a water squirter and her daughter said "Do you want me to squirt you?" and Janey said of course "Squirt you!"---which reasonably the daughter replyed "She wants me to squirt myself!") The nights have featured pretty good sleep, and overall it's been a nice stretch!

As for talking and so forth---I feel like it's been reasonably good. But I think I only compare Janey to herself. When she says something I haven't heard before, or does something new, I get very excited. Sometimes the people around me seem a little perplexed as to why I'd be that thrilled to see her doing something most 2 year olds probably do with total ease. Yesterday she asked for water "in a glass"---she always adds that, I'm not sure what she thinks we usually give her water in---and then glanced at the fridge and added "ice---want ice" which I thought was a great sequence---asking for something, and then adding on an appropriate phrase. But I realize that's the kind of talk probably most 18-24 month olds would handle with ease. The other day I asked her to draw a circle, and she drew something definitely round. I was so happy. I realize lately after the horrible crying times, I think something changed in me. I stopped thinking as much at all about her delays and autistic behaviors. Not completely, of course, and I will think about them again many times, but for now, if she's happy and making even very minimal progress over her own past marks, I am happy. I'm only holding her up to herself. Tony is feeling the same way. It must be a landmark for a lot of parents of children with retardation---the moment you realize that your kid is your kid---they have their own measuring stick and it's not the same as other kids, but you can still feel happy about the tiny steps they take, and laugh with them at funny things, play with them at their own level, find joy in what they enjoy, etc. I'm being uncharacteristically cheery and maybe a bit Pollyannaish, but for once I will let myself be that way.