Searching for words

Last night, Janey said "I want to watch...." Then she stopped, and I could see she couldn't find the name of the show she wanted.  She started over "I want to watch...", and then did the same thing several more times.  Something about how she was saying it made me not jump in.  She had the look and the sound of someone who is searching for a word, who knows what they want to say but just can't quite bring the word up that moment.

When she started to look upset, which took a few tries, I did what I often do, and gave her a sentence with a blank.  I said "The show I want is named..."  I'm not sure why, but that sometimes makes it easier for her to fill in.  But this time, she didn't.  She kept looking at me, and the look started to break my heart.  It was lost, almost scared.  It was a look that said "Why can't I say this?  Why is what I need to say so hard to say?"

Janey's talking goes up and down.  There are times she talks more, and times she talks less.  We're in a low ebb right now, quite low.  I don't panic over this, because over and over I've seen that the talking will come back to higher levels in time.  But somehow, this felt like the first time she was aware of her own trouble finding words.  I could be reading too much into her look, but over time, I've gotten pretty good at reading her face.

After a few more attempts by me to give her a fill-in-the-blank, she said "The show I want is the show".  I then did what I had hoped to avoid.  I started listing shows she might want---"The show I want is..Angelina?  Blue's Clues?  Beauty and the Beast?   Kipper?  Wonder Pets?  Dora?  Barney?  Courage the Cowardly Dog?   Backyardigans?"  She stopped me there and said "Backyardigans"  So I put that on, and she seemed fairly content.  But still, I got the feeling that she simply was tired of the whole thing, and that she picked a show that didn't sound bad, not the show that she was really thinking of.

I thought about this incident a lot last night and this morning.  I wondered how I could have handled it better.  I wish she could manage the TV remote and pick the show herself, but it's so complicated to use Amazon Fire TV to pick a show that might be on Amazon Prime, Hulu or Netflix, that might be a video we've bought or one that is on the air---all of us have trouble with it.  I could try to get her to watch videos on her iPad instead, but she is very clear when she wants the big TV and not the iPad.  I could have a page of pictures of shows she likes to point to, but she rejects that kind of solution at home almost always, and even if she didn't, the list is limited to ones I think of, not all the ones that exist.

What I really wish is that she could learn more word retrieval skills.  She has a very good speech therapist at school right now, but her time with the therapist is limited, and I have the feeling there might be specific kinds of therapy that most help with word retrieval.  A few months back, I started trying to find a place for her to get outside speech therapy, and found it was far from easy.  There are lots of places that do autism therapies, but they are almost all exclusively ABA, and most word with kids under 13 only.  Janey will be 13 in two months. I have found iPad programs specifically to help with word retrieval, but they are aimed at people without intellectual disabilities, and quite honestly are far beyond Janey's abilities.

Before school this morning, I stopped Janey and said to her "I know sometimes it's hard for you when you can't find the word you want to say.  That must be very frustrating.  I saw how sad it made you last night.  I want to help you with that, and so does Daddy, and everyone at school"  I have no way of knowing how much she understood, but I am glad I said it, and she listened, and smiled at me.

There is so much about Janey that is mysterious to me.  How often does she settle for shows she doesn't really want, food that isn't what she is aiming for, songs playing that aren't really the song she wants, because she doesn't have the words?  Why can she sometimes talk so much more than other times?  How is it that she can remember endless song lyrics, or show dialogues, but not sometimes simple titles or names?  How can I help her?  And sometimes I ask myself the hardest questions of all---how is this fair for her?  Why does she have to struggle to be understood?  What would her life be like if she could talk more readily?  Those last ones don't have answers, I know---or if they do, they are beyond my own word retrieval skills.

The credit and the blame

In the bad old days, autism was thought to be caused by "refrigerator mothers", mothers who hadn't really wanted their kids to start with and therefore showed them little human emotion.  I would say almost no-one thinks that any more, thankfully.  Although I think most autism mothers, like most mothers in general, search their memories of their pregnancy and birth and their child's early days, trying to figure out WHY, most of us do know that our child's autism is not our fault.  We didn't cause it.  We might not know what caused it, but it wasn't something we did deliberately or even indirectly.  We don't take the blame, at least on our better days.

I'm wondering, then, why so many mothers feel it is there job to FIX the autism.  We can accept we didn't cause it, that nothing we did made our kids they way they are.  The inverse of that is that although most mothers tried always to do everything right, they were powerless to prevent autism.  However, although we can sort of accept that powerlessness and blamelessness, we can't accept we don't have the power to cure autism.  We feel, somehow, that if we do everything right, if we try just the right combination of therapies or diets or experiences or schools or approaches or medication or supplements or so on, we will fix the autism. We believe in people who say they did just that---people who write books about the miracle cures for their children.  We give ourselves in our minds the power, if we just try hard enough, to fix what has happened.

I am trying hard to not do this.  I'm trying to be consistent.  I know I didn't cause Janey's autism.  I don't know what did cause it.  And because I didn't have the power to keep her from becoming autistic, I also want to accept I don't have the power to overcome the autism.  That in no way means I'm not going to keep working to make her life better, just as when I was pregnant or when she was a baby, I did everything I could to give her the best start I could.

This is where my older son comes in.  He was also at one point, when he was very young, diagnosed with autism.  That was changed within a few years to an Aspergers diagnosis.  When he was 8, testing showed he no longer fell into the autism spectrum.  When he was 12, we stopped having him on an IEP at school.  Last week, he graduated from high school as valedictorian of his class.  He heads to Brandeis in the fall.  This is where I have to practice what I preach.  I don't take the credit for his "recovery"  I think he was misdiagnosed, but even if that wasn't the case, it wasn't anything I did or didn't do that "fixed" him.  He did that himself.  It was what was meant to be.  I am proud of him, but I in no way at all take credit for him.  If I did, it would follow I should take blame for Janey not being cured, being in fact very much the same as she was when she was diagnosed 5 years ago.

I believe in autism acceptance, mostly.  And I think that needs to mean an absence of credit or blame.  Janey is who she is.  She is a full, complete, complex person just as she is.  Talking about credit or blame makes her sound like a project, not a person.  The same holds true with William, my older son.  As tempting as it can be to feel we can really change our children, I truly believe we can't.  We can soften their path, we can give them opportunities to shine in their areas of talent or interest, we can be there when they fall or need our help, but they are people on their own.  I'm not quite there yet, in fully believing that, but I am working toward it.

Mythologizing Recovery

I've been continuing to read "Far From The Tree".  It's a very long book!  I've finished the chapter on autism, and I'm going to write more about it when I finish the whole book, but in that chapter, there was a quote that struck me very hard.  It was written by Cammie McGovern, the mother of an autistic child, in a New York Times op-ed piece (you can read the whole piece here) and it said "In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."  That says a mouthful.  She says in the piece something I've thought---that you don't really meet these recovered kids outside of the books.  I am sure they exist, in a way.  In fact, I have one in my own family, in my son, in a way.  But I don't think he was ever autistic to start with, and if he was, I didn't "recover" him.  He recovered himself, or his brain recovered itself.

Do I feel like a failure because it doesn't appear Janey is going to "recover"?  Well, strangely, although I am prone to feeling guilty about everything (including the ducks going barefoot, to use a phrase I heard growing up), I don't feel guilty about that.  It is not my goal to have Janey recover, because I don't think it's possible.  And I am not going to use her whole childhood to try to do something that I don't feel in my heart is possible or is in her best interests.

I was thinking of an analogy.  Say you had a kid, a "typical" kid.  A great kid, but with a huge amount of trouble with math.  This kid just doesn't get math.  He is good at a lot of other things---let's say he writes poetry, he plays chess, he is a fast runner---he's a cool kid.  But he is no good at all at math.  And that just is not okay, with his family or school.  They decide to "recover" him, to fix his math problem.  And because anything worth doing is worth doing all out, they go all out.  They start a 40 hour a week math tutoring program, for starts.  They have him get rewards for doing math.  Before he can play chess or write his poetry or run, he has to do a math problem.  They work math into every part of life.  Now, this kid is never going to be a math whiz.  Not even the most optimistic people think that.  But the goal is that he be indistinguishable from any other kid with his math abilities.

One of two things can happen.  He can recover to the point that he functions as well as anyone at math.  It took him about 20 times the effort, and he doesn't like math, and he is not going to have a career in math, but he is okay at it.  Meanwhile, he's lost out on time he could have spent doing things he's really good at.  He's been hugely frustrated over and over.  He basically didn't have a childhood for years, recovering that math.  The other result---it doesn't work at all.  He doesn't learn math.  Maybe he can do a few math facts here and there, unpredictably.  But he will never, ever be in a regular math class.  The time teaching him basically has been wasted.

Now let's look at another way to handle his math problem.  We could say "well, math is not his thing.  It's quite helpful in life to know a little math, so we will work with him on that.  He will have math lessons now and then, but we are certainly not going to let it take up time he could be living his childhood.  We are going to emphasize what he's good at.  We will help him with math, but we realize that he won't be going to MIT.  He won't be taking calculus.  He might spend his whole life with a little trouble counting change"

Of course, the skills autism takes away are more life-changing than math, but the basic theme is the same.  I accept that Janey is autistic.  There are things she'll most likely never be good at.  But there are things she's very good at, and besides that all, she's a kid.  I could go all out "recovering" her, and maybe, maybe, she could get closer to "normal", although with her intellectual disability, that's not likely.  But she'd lose out on a lot.  Or it might not work at all, and I would feel like a failure.  Some people might say it was worth it, that I should have done 40 hours a week of ABA, a special diet, intensive floortime, high dose vitamins, a private school.  I say no.  I say I'll keep doing what I'm doing, and what her wonderful team of teachers and therapists are doing.  I'll work on the autism, but I'll leave time for music and running around outside and snuggling and laughing and a childhood.

One Man Show

I wish I could remember who is was, but someone at Janey's IEP meeting said that when Janey is not in a responding mood, working with her is like a one man show.  That was such a great line to describe how it can feel when you don't get any responses at all from her!  When Janey gets in that kind of mood, the completely non-responding mood, you can start to feel like a clown or magician or speech-giver working in front of a totally quiet audience.  You have no way of knowing if she's taking in any of what you say.  You can pull out all the stops, do everything she usually likes, and she just looks at you blankly.  That is one of the most frustrating of the states Janey gets into.

It was making me think about the many, many different modes Janey has.  That was a huge theme at her meeting---how inconsistent she is.  A lot of education for special needs is based on not moving on until the child shows competence at a certain level.  With Janey, one day she can blow you away with how well she knows a subject, while the next you'd think she didn't know a thing about it.  It is as extreme as what surprised me most at the meeting---that when Janey is in exactly the right mood, she can write her name "Jane", and in fairly good printing!  I was shocked by that.  On other days, she can't even seem to hold a pencil.

Janey's modes seem to come in groups.  For example, there's the talkative excitable mode.  That is when she seems almost manic---talking a lot but also very, very wild, sleepless, running around, reciting phrases.  Then there's the talkative relaxed mode, which is probably my favorite---when Janey is happy but not wild and talking a lot more than usual.  With the sad moods, there's loud sad, where she screams all day, and soft sad, where she is just not responsive, where she wants to be alone and sleep.  There's cheerful and cooperative, and there's cheerful and "Dennis-the-Menace"  Cheerful and cooperative might not involve much talking, but she will do as you suggest, and will do things like putting on her shoes when we say we say we are going someplace.  Cheerful and Menace is when she pours out bottles of soda or dishwashing liquid, where she runs away from us dangerously but laughing.  There's more moods than that, but you get the picture.

I want to think Janey can always absorb what is going on around, even when she appears to not be.  I've read about a few kids with autism that suddenly in their teens were able to communicate much better than in the past, and they said one of the main things they wanted people to know was that they were understanding what was being said even if they couldn't respond.  So even when Janey is in one-man-show mode, I am trying more lately to explain things to her, to tell her what noises are that she might be hearing, to read books to her, to take care not to say things around her that might upset her.  It can't hurt.

I worry a little about Janey getting bored, if she really can understand much more than she can demonstrate.  What if she can already read, at times, and we are over and over teaching her her letters?  What if she gets everything that is being said to her, and is sick of hearing my voice telling her the same lessons over and over?  But I think it's more likely that when she's in some of her modes, she truly doesn't know the same things she does when she's in a different mode.  Or more---she can't access the knowledge.  That part of her brain library is temporarily locked up.

I think if science could figure out this---why kids with autism can't always access what they know---it would be a huge stride forward in helping them learn.  I hope it's being studied, somewhere.

Late edition

I thought Janey was asleep on my bed, but she got up and came to me, saying "snuggle on Mama's bed", which is one of her most common phrases. As she grabbed me for a snuggle, I became covered with, well, something that should have gone in the potty. And as I yelled for Tony, I saw the bed was also covered with that lovely substance, and much of the floor. All this happened with me literally within an arm's length of her. Every single blanket and sheet was affected. So Tony took Janey off for the second bath within an hour, I dragged everything to the cellar laundry, washed the floor, started the laundry (it will take multiple loads to do) and then, went outside in the dark and just sat there for a while.

Today has been a rough day. I got scary news about a relative, who has struggled with demons all his life. I woke with a migraine. It has been hot and humid. Overall, though, Janey has been cheerful, and until this evening I was holding it together. Now, I'm not. Sometimes it just all feels so overwhelming and never-ending. Not even just Janey, but so many people's struggles. I know so many people who struggle every day to make sense of their lives, to find meaning in their life after difficult childhoods, or multiple losses or internal beasts that just don't want to let go. I wish I could do more for others; I wish my own life was not so overwhelming that I often don't have the resources to help others more. I don't want to be the one who needs help. That is not a role I ever, ever wanted to have. And yet it is teaching me, although it's a hard lesson. There is not help out there as there should be. We don't have answers for life's tough struggles. I get tired of reading and hearing about therapy, counselling. Not that they don't have their places, but they don't fix anyway. Some problems because they are not fixable, some because talking about them is not what is needed. What is needed is money, programs, volunteers, a change of society's heart.

I will stop before I turn to a bit of rambling. But I'll leave with a thought. Pick someone you know that needs help---an ear to listen, a friendly smile, a word of encouragement. Not money, not any long term commitment, but just a kind boost. Pick someone like that every day, and give them that boost. If you are that someone needing the boost, I want to say---you are not alone.

Start of the year

Start of the school year, that is, which seems like the start of the year for students and parents. And how's it going? Pretty well, for Janey. I feel like a grinch when I say to people that the beginning of the year always goes well for her, as if I am waiting for it to stop going well, and I'm not. I hope it goes well all year long. Janey is in 1st grade, in a great classroom with wonderful teachers. She has a desk. The desks are pushed into tables, and she is right there in the thick of it. She seems very, very excited in the mornings before school, and is cheerful when I pick her up, if tired. The surprising thing at the beginning of the year was her hugging spree. She isn't much of a hugger, but I think she was truly happy to see people she knew from other years. The best was when she hugged her friend Michael, who is in 5th grade and who she has known since she was a baby. It was totally spontaneous---we were just standing there before school and she went over and hugged him. His mother and I both got misty-eyed, I think. She hugged several teachers and therapists, too, and said to her PT therapist "I want to ride the bike" which is something they do together.

At home, she's been fairly happy too, but in a not-sleeping-so-well phase. The last few nights have been okay, so hopefully it's ending. I think the start of the year had her so hyped up she was waking in the night excited about it, and staying up for hours. It's the hardest thing. You can deal with almost anything, if you get sleep.

Her reaction to the year starting was making me think about her traits that have nothing to do with autism. She is like her brothers in her liking of school. They would recoil in horror if I ever breathed the words "Home Schooling". They want to be out there, seeing people and part of the crowd, and Janey does too. She likes the routine. She's not shy. Her brothers aren't either. It still makes me marvel, and wonder where they get it. I don't think that is part of the autism---it's part of her underlying personality. I like seeing it come through.