The summer so far

 Janey started summer school today.  I'd like to tell you how it went, but I really have no idea.  She went off on the bus happily, and came home in a fairly good mood, but the time in-between is one of those black holes we as parents of kids like Janey face.  There was no note in her backpack.  I don't know who her teacher is.  I know where the school is (it's not her regular school, as all high school students with special needs go to summer school in one place) but that's about all.  If I don't find out more tomorrow, we will make some calls, but it's a tribute to my general faith in the Boston Public Schools that we are sending her at all, I think.  Of course, we asked Janey about her day, but that has not once in her 13 years going to school yielded any information.

The summer up to this point?  Average, I'd say---not that each day was an average day, but it hasn't been an especially good or bad summer.  We've had some very hot days and some weirdly cool days---the 4th of July featured the same high temperature as last Christmas did---and we've had a good deal of rain.  We've taken Janey for a lot of car rides, but as so often happens in the summer, I don't feel like we've done enough else.  We've played in the driveway a good deal, which mostly means Janey runs around holding her iPhone and listening to YouTube videos.  She has watched "Toy Store 4" probably 100 times.  She's eaten lots and lots of food, luckily, mostly very healthy food, which is why she is able to eat from dawn until dusk and beyond without severe weight gain.

Sleep has been a problem.  As Janey gets older, it's one area that is more of a problem than it used to be.  Just tonight, she's been awake, asleep, awake, asleep and now awake, all since 7 pm, and it's 11:30 now.  There have been lots of nights without any sleep at all, on a couple occasions, two nights in a row.  To us, it seems impossible.  I truly just don't know how she can do it, without napping during the days.  Other times, less commonly, she'll sleep most of the day and most of the night.  Her sleep just doesn't seem to have the pattern that most everyone else's sleep has.  And that would be fine, except we really can't sleep when she isn't sleeping.  We can catnap, but she wakes us up often and we never sleep deeply, as we really need to keep an eye on her.  We are thankful she's isn't in any way an eloper.  Our house has a front and a back hall with doors, so kind of an airlock, but I'd say in all her years she's only ever gone into the halls even without us once or twice.  So we don't worry about her escaping, but more about her dumping food around or having toileting issues or tossing bowls onto the ground for fun (a recent new hobby)

Janey did have a filling done under general anesthesia last week, which went very well.  She was happy and cheerful even going to the dentist, which to me spoke to how bored I worry she is at home.  I feel guilty over this boredom, but it is so very hard to get her interested in anything new.  I think I'd go out of my mind watching the same movie over and over, or taking car rides to nowhere for hours, or listening to the same music over and over while running up and down a driveway.  But when I try very hard to introduce a new move, or when we try to take her for walks around the neighborhood, or to play some new driveway game, or just to shake things up a bit, she is not at all interested.  Maybe it's us, because she certainly seemed to enjoy going to the dentist and to school.  But still, I feel a huge amount of guilt over her limited range of entertainment.  I know I've written about this before, but it's on my mind so much.

Janey will be 17 next month.  That shakes me up.  When I was 17, I left for college.  17 was the start of my adult life.  For Janey, 17 will probably be much like 16, or 15, or 5.  Does that matter to her?  Is there any way I can find out?  Is Janey happy with her life?  Does she think about what her life is, what she wishes it was, what it can or can't be?  Is it enough that most of the time now, Janey is fairly content, or is there more that we should do?  Does she long for more?  There are so many things I don't know about Janey, although our lives are intertwined so closely.  How I wish I could ask her so many things---starting with the little things, like how school was today, and leading to the big things.  Until I can, if I ever can, I feel a huge weight of obligation to make the right decisions, to provide the right enrichment, to protect her when needed, give her freedom in the little ways I can, to make her life meaningful.  I hope I can do even in a small part what she deserves.

"Daddy just went asleep"

Early this morning, about 5:30, Janey woke me up by putting a Tupperware container of cheese on top of me.  This means she wants some cheese cut up.  We keep a knife right in the container for convenience.  In my sleepy state, I asked "Where's Daddy?", hoping he could do the job.

We ask Janey questions like that all the time, questions we don't really expect an answer to.  I've tried at times not to, to not to push her to talk when she doesn't want to.  But the questions sneak back, because that's a natural way of having a conversation, and in general, I like to talk to Janey like I would to most people.  It's easier, and it assumes competence, which is important to me.  But that doesn't mean she answers me...usually.

After a pause, I was very very surprised.  Janey said back to me "Daddy just went asleep".

It's hard to really explain how surprising that answer was, but there were many, many unusual things about it.  One is that it was original.  It wasn't echoing something she'd heard.  Almost all her speech that is more than a single word is an echo.  Sometimes it's echolalia that works just right in the situation she's in, but most of the time, it's not.  She'll say lines from a movie, or something that one of us said that caught her fancy.  She'll sing, or obsessively repeat our refusals "I'm not taking you for a car ride right now!  We don't have any salami!  It's time for bed!", things like that.

Janey will also often give yes or no answers (but sometimes mixing up yes and no).  It usually takes a couple tries.  We'll say "Do you want some crackers?" and wait for an answer, and then we'll rephrase it "Do you want some crackers, yes or no?" or perhaps "The food I want is...." giving her a fill in the blank.  And eventually, she'll say yes or not, or repeat "The food I want is crackers"

Almost all Janey's speech that isn't scripting or echolalia is used to express wants.  That's great.  We love knowing what she wants, and we will praise her heavily for saying something like "Want to go for a car ride?" or "Want to watch SpongeBob?", telling her we really appreciate her telling us what she wants.

So---what we almost never heard is speech that is original, speech that doesn't express a want, speech that answers a question, or speech that is a sentence.

When Janey does say something like she did this morning, there is a tone she uses we don't hear any other time.  It's slower, with less expression.  It doesn't flow out like her frequent scripted speech.  It's very deliberate.  And that is how she said "Daddy just went asleep"

Tony had not actually just gone to sleep.  He was in the bathroom.  But often, when Janey wakes up in the middle of the night and wants something, Tony will very justifiably say "I just went to sleep!"  And so, Janey heard my question and understood why I was asking it.  She understood the subtext---why are you waking me up to give you cheese?  Why aren't you asking Daddy?  (Tony usually is awake long before I am.  He's the world's ultimate morning person)

Progress with Janey can be very, very slow.  It can be so slow it appears not to be happening.  We can try to teach her something and see almost no progress for years and years and years.  But she's learning, at the pace she can and wants to.  Today's sentence was a wonderful reminder of that.  For whatever reason, speech of some types is incredibly hard for Janey.  I think the part of her brain that would form answers beyond yes or no, that would form original sentences, just doesn't quite work like other people's brains.  I think that accounts for the very different tone she uses for the rare times we get those sentences.  They require use of some other system in her mind.  It's like if we wanted to solve a math problem using only verbal skills, or wanted to walk without the automatic motor skills.

I don't believe in breakthroughs with Janey.  Having her say a sentence like she did today doesn't mean it's going to start happening all the time.  That's not the point.  In some ways, it's a reminder of why it's so hard for her to talk in that way.  Even in this case, the sentence wasn't quite accurate, and it wasn't quite grammatical.  But it happened, and we need to always remember that Janey had abilities and capacities that doesn't show themselves on a regular basis.

Every day, I am so proud of Janey.

As a tribute to Mad Magazine, Snappy Answers to Stupid (or at least uninformed) Questions!

"Does she go to school?"

This one can still surprise me a lot, especially if it's asked by anyone under 70 or so.  Of course she goes to school.  Since 1975, all children go to school.  Are there still people who think that kids like Janey just have to stay home?


"But she'll live independently someday, won't she?"

Well, no.  She won't.  Unless something very, very unexpected happens between now and adulthood, Janey will never live independently.  And honestly, that's not something I dwell on or get upset about much.  She'll live with us.   She is not going to have the skills to safely live on her own, not at all. It's not a goal of ours.


"Did you take Janey with you on your vacation/weekend getaway/day trip?"

Yes.  Yes, we did.  Unless we do things within the hours Janey is at school, she is always with us.  I get this one more than I'd ever think I would.  There isn't anyone that watches Janey except our family and school.  No-one.  And that doesn't suddenly change because we want to go on vacation.  There isn't some backup corps of people that aren't usually there but will jump in if we are going away.



"But you must get a lot of help/services/respite/money because of her disability?"

No.  We don't.  I am not exactly sure where people get this idea.  Maybe in the past, there was more money out there, or maybe they are thinking of very specific cases, but basically, there is nothing now.  Someday, when Janey is an adult, she might get Social Security.  Some younger kids, if their famlies want it, get a lot of ABA therapy.  But there is no money for respite.  We do have a state Medicare type backup insurance for Janey, that supplements our regular insurance.  Once, for some reason, the state gave us $500, randomly, and we used it to buy Janey's first iPad.  But other than that, outside of school, no.

"She isn't, you know, SLOW?  Kids with autism are very smart, right?"

That's a tricky one.  I do think Janey is very smart, in some ways.  But in traditional ways, or in the ways of autistic people you sometimes see on TV, who are quirky but brilliant, no, she isn't.  She doesn't read, or write, or speak in complete sentences.  She doesn't have special skills, a savant type hidden ability.  She isn't going to college.  She isn't going to get a high school diploma. And that's no big deal.  She's herself.

"Have you tried (fill in the blank here with things like special diets or specific therapies)?"

 The answer is one of two things---yes, we've tried it and it didn't work, or no, we haven't tried it, and we aren't interested in trying it.  You are not going to ask that and get someone saying "Gee, we've never tried that, but now that you mention it, we will!"

"What a tragedy for you!  How do you go on? How do you live with a burden like that?"

The few times I've heard this, my breath was almost taken away with anger.  Janey is not a tragedy. She is our child.  A tragedy is losing a child, having a child die.  I know a few families who  have lost a child, and I can't even think about it without crying every time.  We have Janey.  No child's life is a tragedy.  No child is a burden.  I'm not minimizing how difficult raising a child can be, any child. But there is a difference between something being difficult and something being a tragedy or a burden.

"How do you do it?  I could never do what you do!"

Don't say this.  Don't say it like it's a compliment to us.  Don't say it at all.  You COULD do it.  You WOULD do it, if Janey was your child. You would do it to the very best of your abilities.  Saying that  you couldn't is saying we as parents are somehow specially chosen.  We aren't.  And while we are doing the best we can, making us seem like some kind of superheroes serves to give society a cop-out. Why give help, respite, services to super-parents?  They are amazing!  They are doing something other people couldn't do.  We will admire them, praise them, but we don't need to HELP parents like that!


And here's a few questions I'd like to be asked more often...

"What is Janey like?  Tell me about her!"
"What can I do to help you?"
"What services would be most helpful for the city/state/country to provide?"
"Want some coffee while we laugh about everything and anything, including but not exclusively life with a child with autism?"

This and That

Sometimes I wait to write a blog entry until I have one subject I deem big enough to write about, but this time, I've got just a little of this and a little of that.

Last Friday, Janey had an ultrasound as part of the tests she's having to try to figure out why she, after just getting it once really, has stopped getting her period for the past two years.  After asking around, it seems like this has nothing to do with autism or her other challenges---it's something else.  We aren't that alarmed or worried, but it's something we need to eventually figure out.  Blood tests shows she makes almost no estrogen, which is quite unusual.  Otherwise, there isn't a lot up.  They even made sure she has two X chromosomes, which she does.  I was dreading the ultrasound badly.  There is no real way to prepare Janey for any medical procedure, although I tried, telling her they were going to put lotion on her stomach and then "mush" her tummy a bit.  Of course, she screamed when they started.  But I liked how the technician handled it all.  She talked in a comforting way but just kept going, while Tony and I held Janey in place.  The noise attracted a passing doctor, who also looked at the ultrasound and said on first glance everything looked good.  Now we are waiting to hear from the adolescent specialist as to what we do next.

Janey has been up and down lately.  There were a few days that featured the return of the screaming---the screaming that has no cause she can tell us or we can figure out, the screaming that is so loud it can be heard from very far away, so loud I can't imagine how she stands it without going deaf, or how I do.  There were a few afternoons where it went on for an hour, something that used to happen a lot but doesn't as much now, thankfully.  It brought back all the old familiar feelings of hopelessness and despair, and left us all on edge.  I hope it's over for now.  But there have also been a lot of days lately where Janey has been a delight---happy from morning till night, funny and upbeat.

This weekend, Janey surprised us with a few things she said.  At one point, out of the blue, she yelled over to us "I need a foot massage!"  We were both startled.  She doesn't usually use the first person like that, or use complete sentences, or be quite so direct about what she needs.  She was holding a foot up in the air, so we even knew what foot needed massaging!  That was great.  Later that day, in the car, she said "What does the green light mean?"  I think it's a question she's been asked, but she paused after asking it---she said it exactly how a question is said.

The "talker", the iPad with AAC apps on it, gets a fair amount of use.  Janey seems to enjoy it, but mostly at bedtime.  I also give it to her when she seems to be upset or confused, in hopes she'll find a way to tell us what she wants.  I have two programs on there, TouchChat and Proloquo.  (actually 3, but the third one is pretty useless)  TouchChat is what she uses at school and the one her great teacher helped us personalize, but at times, she seeks out Proloquo.  To me, Proloquo seems more daunting, but it has more content, too.  The other night I saw why she chose it, as she easily got through a few screens to find the word she wanted, "hate".  She'd been in quite a mood, and she hit "hate" over and over and over, while occasionally giving me a meaningful look I had no problem deciphering!  I actually loved that.  She was able to tell me what she was thinking, and it's pretty typical that a 13 year old girl who has spent the day with their mother might be feeling some feelings the opposite of "love".  She isn't usually using the programs for full sentences, more for finding single words, but I am letting her take the lead, and it's fantastic she seems to like having the programs to use when she wants.

All of us in the family have been struggling a little lately with our own issues.  It's been a tough spring in a lot of ways.  But Janey continues to surprise us, to keep showing us new sides.  She is becoming her own person, more and more. We've been pleased lately that she has a trait NONE of the rest of us have---neatness.  She's very organized.  What she uses goes back in the place it's supposed to be.  A little more all the time, she is truly a help around the house, doing small chores we ask her to do and picking up after herself and often after us.  I don't know where she got that neatness gene---maybe from my sister.  But one of the greatest parts of being Janey's mother as she starts her teen years is seeing who she is, seeing her very cool personality unfold more every day.

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.

Baby Bubbles

It's hard to explain exactly, but lately we are seeing something in Janey that is new and wonderful.  She is talking a little more, but it's not just that---it's a change in how she seems, in how she connects.  It's not there all the time, and it can be hard to describe, but when we see it, Tony and I look at each other in amazement.

I'll try to describe the latest incident.  Janey came home from school the other day very upset.  It seemed she was in pain---she was grabbing her belly and twisting around a bit.  It looked to us like gas pain, or pain from constipation.  We eventually gave her some Tums, hoping to help her feel better, and after a while, she did seem to feel much better.

As we were lying down with her at bedtime, we were talking about the Tums.  I said to Tony "I think they work by taking big bubbles in the stomach and breaking them down into little bubbles, so they can get out"  I wasn't talking to Janey, or doing what we sometimes do, talking to Tony in terms we thought Janey would understand, so she could listen indirectly.  Doing that often seems easier for her than talking to her straight on---it's like there is less pressure, so she hears without feeling pressured to respond.  But that's not what I was doing right then.

Right after I said what I said about the bubbles, Janey pointed to her belly and said "Baby bubbles?"  She said it exactly like most people would reply, in a questioning voice, like she was looking for confirmation she understood correctly.  Tony and I looked at each other in amazement.

This might not sound like a big deal to someone who doesn't know Janey, but it was something in several ways we have hardly ever seen.  First, she responded with appropriate timing---no delay.  Secondly, her tone was right on---not echoed sounding or sing-song or anything else, but just questioning.  Thirdly, she used a word we hadn't used, "baby" instead of "little"---so she wasn't quoting or repeating, she was using a synonym to clarify.

It's this little kind of thing we are seeing more and more of.  Janey seems to be, for the lack of a better word, tracking our speech more.  She seems to be following what we say and processing it in real time.

Another story---kind of a funny one.  Janey's uncle Joe often asks her "What's my name?"  It's something he did with all three kids when they were little, as a way of making conversation.  With Janey, he's been asking her that for years.  She replies or not, depending on her mood.  However, the other night, Tony was out with Joe and Janey in the car and I got a call.  Tony said "Are you sitting down?  You won't believe this"  What had happened was that Joe asked Janey, for maybe the ten-thousandth time in her life, "What's my name?" and Janey replied "You forgot your name?"

That answer---wow.  We joked that she must have been sitting on that reply for years, waiting for the right time.  It's an amazing reply to us---it shows she understand the meaning of the word "forgot", that she gets that someone would ask a question to get information, and most of all, it breaks away from a script that has been years and years in the making.

For a long time, Janey's speech didn't progress.  Our theories of why it suddenly is---Janey's having a good year of school and a good year of health.  Things have been steady and fairly upbeat.  She has a great team at school---a terrific teacher, an ABA worker we get super reports about, and a speech therapist we met her at IEP meeting that seems to get Janey in a way that we haven't seen in a speech therapist for a long time.  Those elements together, along with Janey herself maturing and learning, seem to have prompted progress where we hadn't seen it for years.

I hope very much this speech and understanding trend continues.  I am not being pessimistic but rather realistic in saying it very well might level off or regress after time---we've seen that pattern often.  However, knowing that she CAN talk and understand in the way she's been showing---it's wonderful.  It will keep us working.

In the larger picture, I want to get this out there partly to give hope to others.  There is so much emphasis on early intervention, on "crucial stages".  There is always a feeling that the necessary therapy has to happen RIGHT NOW, or never.  Janey is the proof I need to say that isn't necessarily the case.  She's making progress now, at age 12, at a rate we haven't seen since she regressed at 3.  It might not be the kind of progress that you read about, the "miracle cures", the breakthroughs, but it's progress non-the-less, and we couldn't be prouder of her.

None of the above

I used to be a big fan of women's magazine quizzes.  You know the type.  They give a scenario like "Your doctor has told you that you need to lose weight.  You..."  A.  Don't even bother to try, because losing weight is impossible  B.  Go on a starvation diet until you have lost the amount he wants  C.  Start eating a healthy diet full of fruits, vegetables and whole grains.   You all know what the right answer is supposed to be, and picking it can give you a good feeling, a feeling of superiority to those people who might pick A or B.

In real life, it isn't always quite as clear.  I kept thinking about that yesterday.  Let me pose the question to you all...

It's the third snow day in a row.  Your twelve year old daughter with low functioning autism is very unhappy.  She has spent much of the day screaming.  She didn't sleep well the night before, and you finally get her to lie down with you on her bed for a possible nap.  As soon as you are lying down, however, she said "Do you want cheese?", which means she wants you to get up and get her cheese from the refrigerator.  You are bone tired, and she is perfectly capable of getting the cheese herself, and you say to her "If you want cheese, you go get it and bring it to me"  She reacts by screaming loudly and kicking you.  You...

A.  Start screaming back at her, telling her you are just about at the end of your rope, and that she needs to stop acting that way, and you are so tired of it all, and....so on.

B.  Overcome your aches and tiredness and get up and go get the cheese, knowing that might be the quickest way to get past this whole bit.

C.  Tell her calmly she can't kick you, and that you are going to walk away to let her cool down, and that when she does, you'll talk about the cheese.

You probably know what the answer is supposed to be.  However, A and B are pretty darn tempting, in the moment, and I may or may not have picked one of those choices yesterday when confronted with this very scenario.  However, I eventually accessed my inner magazine quiz self, and picked C, the "right" answer.  Janey's response?  As soon as I'd gone into the next room to let her cool off, she found a bag of chips, opened it and threw chips all over her bed, crushing the chips as she did so, so the bed was covered with chip crumbs.  I stood my ground and stayed away, figuring that chips can be cleaned up.  So she upped her game.  She ran to the TV and started pounding it with her fists, something she knew I couldn't ignore.

So...what next?  What't the right answer there?  Before you decide, keep in mind that Janey is as tall as I am now, and as strong.  It's not easy for me to physically stop her from doing things like the TV pounding.

The answer is that there isn't a right answer.  It's a "none of the above" type situation.  As happens fairly often in this life we are leading with Janey, we pick the least harmful wrong answer.  What I did was tell her to stop hitting the TV and I'd get the cheese, which I did, and which she ate a bite or two of before resuming her screaming.

I woke during the night last night, my mind racing.  I kept thinking "I'm not equal to this task.  I don't know how to keep going.  This is just impossible"  I finally woke Tony and we talked, and I calmed down, and woke up this morning ready to keep on trying.  I know in my heart I'm doing the best I can, that there really isn't any correct answers for some of the challenges we face as a family.  But boy, could we use some respite, some help, some something. Until then, we'll keep going, because that is always the default answer---just keep going, because there is really no other choice.

The Answered Question

Yesterday, I waited in the car with Janey while Tony picked up some books that were on hold at the library.  I had Tony's phone, and to keep Janey happy, I asked "What song do you want to hear?"  And she answered.  She said, right away without a pause, "Lady Madonna"

If you knew how rare that kind of answer is with Janey, you'd know how very, very happy it made me.  You might rightly ask "Then why do you ask the question, if she doesn't answer?"  Well, lots of reasons.  Even if she doesn't answer, it can often start a dialogue.  The usual result would be her repeating "What song do you want to hear?", which would lead to me making some suggestions, which then leads to her repeating back one of the songs I said.  Then, I put it on and either it makes her happy or freaks her out.  If it freaks her out, sometimes she'll then say or give a clue what song she does want, or use the feature that shows related videos or songs to pick one she likes.

Often, though, I just ask because it's very hard not to.  For a while, I decided I would try not to ask Janey questions.  It felt like something I should try, since she so rarely answered and I wondered if just being asked felt like pressure to her.  I wrote about trying do that here.  I tried for a while, and then the trying just kind of died a natural death.  I generally am not a fan of doing anything with Janey that feels artificial, forced, and that did.  So I kept asking.

The biggest reason I ask is that I hope for answers.  I want more than almost anything on earth to really know what Janey wants, what she likes and doesn't like, what delights or confuses or scares or excites her.  I want to understand her, to know who she is, so I can make her life as much one that she enjoys living as I can.  And that is why getting a direct answer from her meant so much to me.

I found "Lady Madonna" on YouTube and played it.  Janey didn't respond much.  Usually if she likes a song, she gets very excited and flops her arms around and smiles and laughs.  She didn't at this one.  I later realized that I might not have checked well in my excitement and it might have been a cover version, as there are few Beatles videos on YouTube.  Or maybe she just wanted to hear it for some reason other than that she loved it.  I certainly sometimes listen to music I don't love, to hear the lyrics or understand the style or expand my horizons.

I have a feeling, a hopeful feeling I almost hate to mention for fear of a jinx, that we are close to a new era with Janey.  I feel like she's on the edge of breaking through, of showing us more of who she is, of communicating more.  I'm not sure why I think that, besides little things like the answered question.  But I was thinking today how teenagers, for better or worse, tend to come into themselves, to know what they like and don't like, and they aren't shy about letting people know, usually.  And Janey is within a year of her teenage years.  With all the talk about how crucial the early years are for kids like Janey, I think it's sometimes lost that a lot of kids get easier as they get older.  Maybe "easier" isn't the right word.  I don't want it to be just that it's easier for me, for us.  I want her to be happier, and maybe I should say a lot of kids seem to get happier as they get older.  So far, puberty doesn't seem to be tormenting Janey much.  Overall, she is happier than at any other time in her life.  Not every single minute or hour or day, of course, but overall.  And I hope the answered questions help, and keep on coming.  They are wonderful.

One Afternoon

Janey gets off the bus with manic excitement, something I've learned over the years to be a little wary of.  She runs into the house, dropping her coat and hat and backpack as she goes, and dashes to the refrigerator, pulling out cheese and pesta and ketchup, and yells "Cheese, please, cheese!  Want to pour ketchup!  Pesto, please!"  I fix her multi-course snack, and she eats.  Then she asks for Angelina Ballerina.  I hold my breath as I put it on, and sure enough, after about two minutes, she starts screaming.  She stomps her feet and bites her arm.  As I walk over, she lunges toward me, teeth first, not exactly biting but hitting my chest with her teeth.  I pull away and say as calmly as I can "The TV is making you upset.  I am going to turn it off"  She flings herself onto her bed, screaming loudly.

I stop, take a breath, try to not fall into a useless despair.  I remind myself she hasn't had a mood this bad in a long time, probably a few months.  I tell myself to be patient, to stay calm.  I get on the bed with her and say "You seem very, very angry"  She screams more.  I pick up a few of her stuffed toys, which she never touches, and make them say "I am so angry at you, Mama, for turning off the TV!  I'm VERY ANGRY!"  Olivia Doll says it, Angelina Doll, Kitty Doll.  Janey watches for a bit and then repeats "I'm very angry!"  I rush to praise her.."Great talking!  You told me how you are feeling!"  She grabs my hand and bends my fingers backwards, while kicking me.

I get off the bed and say "I can't be on the bed with you if you are hurting me"  I walk away, keeping her within sight.  She screams and flails around.  Then she screams out "Want to watch Hercules!"  I say "I can't put on the TV until you are calmed down"  She screams louder.  I say "Would you like to take a shower?"  At this point, I'm counting the seconds until Tony gets home, and thinking how a shower would kill some time.  She screams back "WANT TO TAKE A SHOWER!" and so we do.  I don't get in with her, not feeling like being bitten or hit.  I sit in the bathroom and hope she wants a long shower.  She fiddles with the taps and makes the water too cold.  I fix it, and remind her not to touch the taps.  She does it again.  I tell her next time she'll have to get out.  She makes it hot and yells "FIX WATER!"  I get her out.  She is furious.

We go in the living room.  She says "want to watch SpongeBob?"  I ask her if she can calm down.  She responds by taking a deep breath.  I put on SpongeBob, unsure as so often if I'm doing the right thing.  She watches for a few minutes, and then punches the TV and screams.  I walk toward her and she lunges to bite me.  I block her.  I am out of ideas, out of patience.  She goes back on her bed, screaming.  She asks for the iPad.  I give it to her, and sit out of biting range.  There are ten minutes until Tony gets home.  She plays with the iPad for about 5, and then asks for cheese again.  I cut some for her.  Two minutes until Tony.  She asks for the TV.  I say no.  She screams and tries to put it on herself.  I hear Tony coming in.  I tell her Daddy is home.  He walks in the door and asks how things are.  I say "hellish"  I tell him I'm going to the store for a minute, and I leave, shaken and tired.

To the others out there living this life---how are we going to make it?  How are we going to get through the rest of our life that's like this? How can we help the kids we love so very much?  How can we keep them safe while keeping ourselves safe?  What are we going to do?

Forgot to Knock on Wood

I wrote a fairly cheery and optimistic year end post last night, about the success we've been having lately with working to keep Janey happy by doing things she asks for before she has a chance to melt down.  I forgot, however, to knock on wood in reality and in writing after finishing the post, and of course, Fate noticed that.

Today was horrible.  It was not a good start to the year.  Janey spent most of the day screaming.  When she wasn't screaming, she was manicly laughing, or flinging herself around frantically.

What went wrong?  Part of it might be have been that no matter how much we might want to, sometimes we can't do what Janey wants, and she wanted a lot of car rides.  Tony was tired, from her being up early and him being up late for New Years Eve.  He was a trooper and took her for a few rides, but she wanted more.  She also wanted walks, TV shows she wasn't able to name and who know what else.  We tried hard, but as soon as we'd calm her down a little, she'd lash back out.  She bit me and bit William in the course of the day---neither of us hard, but any biting at all is not something we really like.

We think part of what was bothering her was losing three baby teeth in the course of a few days.  Janey's teeth are odd.  She didn't get any teeth at all until she was well past her first birthday, and the baby teeth have been quite slow to fall out.  The dentist told us that she was at age 10 at about the dental level of a six year old.  Now her baby teeth seem to have decided to fall out all at once, leaving her mouth I'm sure feeling odd.  She has some adult teeth slowly poking through where the baby teeth fell out, and they are hurting her.  She said to Tony in the car "My teeth are rolling out!" which was an impressive sentence.  We are trying to explain to her that it's a normal thing to have happen, but I doubt she really gets it.

She might also have PMS, as she has recently entered the stage of life where that happens.  The first few months of that fun stuff weren't bad, but I know that PMS can be a very, very strong force for kids like Janey, and another thing there is next to no way to explain to her.

She tried today.  She really did.  At one point she wanted to walk to the store, but asked me in the middle of a huge fit.  I was worn out enough that I didn't take care not to ask questions as I usually do.  I asked "Do we have to be calmed down to go to the store?" and Janey quickly answered "Yes!"  I asked "Are you calmed down right now?" and she honestly said "No"  I said "Can you try to calm down?" and wonder of wonders, direct answer number three in a row, she said "Yes"  I told her to take some deep breaths, and she did, and calmed down enough that we did take the short walk to the store, where she was very good.  That lasted until about a second after we got home, when she started screaming again.

I will be glad when vacation is over.  I'm sure the lack of routine is yet another reason Janey isn't doing well.  I have to hope today is not a harbinger of the rest of the year, and I don't think it is.  But I won't forget to knock on wood next time.

No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.

If I could ask you, Janey...

What if somehow, I could ask Janey all the things I wonder about her, and she could answer me, answer me clearly and fully?  I have a store of questions a hundred pages long.  Here's a few of them.

Do you like school?   I hear from your teachers if you had a good or bad day, what activities you had, some of what you learn.  But no-one but you can really tell me if you are happy at school, or tell me how you feel about the types of things your brothers told me---what kid in the class annoys you, what lunch is like and who you sat with, a funny thing that happened in class, a moment you felt scared there about something.  I don't have any idea what school really feels like for you.

What makes you like certain movies and TV shows so much?  I certainly know what you like to watch, but I often wonder---why those particular videos or shows?  Why do you watch "The Goofy Movie", with the story of father son bonding and a road trip, over and over?  Why is your favorite Disney movie "Hercules", a movie most people think is one of their weakest offerings?  What is it about that certain episode of Little Bear where Uncle Rusty babysits that makes you want to see it over and over, and makes you scream if I try to put on a new episode?  I would love so much to know what you like about the shows that you like.

When your appendix burst, how did it feel?  How could we have not known how much pain you must have been in?  That one haunts me.  We think Janey's appendix had been ruptured for three days before it was removed.  The pain must have been incredible.  We knew she was sick, enough that we took her twice to the emergency room, but neither us nor the medical professionals at one of the best hospitals in the world knew how serious it was, not until a CAT scan was done.  How could that be?  Do you feel pain differently?  Did you think we did know somehow and just weren't doing anything?

Do you understand at all why people come and go?  You miss Daddy so much every day while he is at work.  Do you have any notion what "work" is, why he has to sometimes leave for the day?  We say your brothers are at college, and you have seen their rooms, but do you get at all why part of the year, they go to live someplace else?  You ask for Auntie Carrie, for Nana and Grandpa, for Auntie Rose.  Do you get that they have their own houses, some of them very far from us?

Why do you scream?  I know there might be all kinds of answers to that one, but what most upsets you?  Why can you be happily watching a movie and suddenly, you scream, like you are in horrible pain?  Are you?  Is it when you don't understand something?  How can we help?

Why do you say "duck" between thoughts?  This is one I wonder about a great deal, although it's not as big an issue as some of the others.  You use the word "duck" like a divider, like a period or a dash, or a repeat sign.  You'll say something like "I know what you mean, but it's just not funny!  DUCK.  I know what you mean, but it's just not funny!  DUCK  You stole my pencil!  DUCK  I can write your name better than you can!"  All quotes from one of your favorite episodes of The Simpsons, but why the Duck in-between parts?  What does it mean?  How did it get started?

What could I do to make your life happier?  That is what I want to know the most, Janey.  I wish you could tell me all the little things and big things that would make you happy.  What could I get for you?  Where do you want to go?  What are your dreams?  Do you have dreams?  I guess at these things; I try as hard as I can to make your life as meaningful as I can.  But the truth is, there is so much about you I just don't know.  I love you so intensely, Janey, but I often feel like I have failed you.  Without the ability to communicate verbally at more than a basic level, without another form of communication, I am so often left guessing.  I can read about people with autism that have learned to communicate, and I can get some ideas, but they are not you, Janey.  You are, like every person with autism, like every person in the world,  a unique, fascinating, complex person, and in so many ways, Janey, I don't know you.

Autism on the Airplane and the questions it raised for me

By now, if you are reading this, you've probably heard the news story about the pilot who made an unexpected landing to remove a girl with autism from his plane, after her mother requested a hot meal for her so she wouldn't have a meltdown.  If you haven't, here's a link.  I'm not going to get into all the ins and outs of this incident, but it seems to have caused a lot of discussion---some of it focusing on the mother and what she should or shouldn't have said and if she was or wasn't handling the situation well.  I'm not going to give an opinion there, because I don't have one---I wasn't there.  I can't speak just from the perspective of being the mother of an autistic child, because we don't speak as a group.  Autism hits people randomly, and the mothers of autistic kids are not any one type, with any one characteristic.

What I can discuss is the questions this raised for me about Janey specifically---the one autistic girl I know well enough to talk about.

If Janey is having a severe meltdown, she is very capable of hurting people.  And she has.  The nightmare moment of my whole life so far was when she freaked out in the emergency room at Children's Hospital, bit me badly, tried hard to bite some nurses, threw objects around and attracted a crowd in the room, including some police officers.  If I ever have a worse moment than that, I hate to think what it might be.

We don't always have a warning that Janey is about to melt down, or much of one.  And even if we do, we can't always fix the situation that is causing the meltdown.  I do feel a responsibility to the people around Janey to keep them safe.  So---what does that translate to?  Do I never take Janey anywhere at all, because there is a chance, however slight, she might melt down and start lashing out?  If this is the solution, Janey wouldn't go to school.  She wouldn't go to stores.  She wouldn't go anyplace.  I can't feel, right now anyway, that that is the correct solution.

How do I balance Janey's right to live in society with society's right to be free from being hit, scratched or bitten?  I think I have a responsibility to take reasonable precautions.  I would not let Janey run around free at a playground full of smaller children.  She can be hugely provoked by crying, and sometimes just randomly she lashes out at littler kids.  If we take her to a playground, we stay right by her side, and I don't attempt to take her alone to places with a lot of kids.  When Janey is out of the house, she is under the direct supervision at all times of an adult.

So, what if I got into a situation with Janey like the one on the plane?  What would I do?  I'll leave aside for now that we aren't going on any planes any time soon, because we can't afford it and because I am terrified of flying.  I'll imagine that somehow we ARE on a plane, and something has triggered Janey---maybe a baby crying.  I'm imagining her freaking out, lashing out, acting in ways that sound far, far beyond anything the girl on the plane in the news did.  What do I do?

I don't have an answer to that question.  I'd of course try to keep her from hurting anyone.  I'd try to calm her down.  But she would attract attention.  It would be a scary scene.  I don't know what I'd do.  I really have no idea.

Most kids with autism are NOT like Janey. She is not the majority.  But other kids like Janey do exist, to be sure.  And exactly how we as parents and we as a society deal with them, help them---that is a question we need to figure out.  It's a question I personally need to figure out.  Janey has much to offer the world.  She is amazing in so many ways.  But the world is in many ways not set up to deal with Janey, and I am just not at all sure how to handle that.

Oh, Janey, how can I help you?

Janey, very unhappy

It's vacation week, and Janey is not happy.  As always, it's hard to say exactly why.  She doesn't care for the change of routine that vacation brings, ever, and this one, with neither brother around, seems to be hitting her extra hard.  Tony is working half days, to help me keep my sanity, but even that is tough.  She isn't sleeping well---she was up last night at 3 am.  Much of the day today featured hysterical crying, and when she wasn't crying, she was furious---lashing out at me, asking over and over to do things we couldn't do, just miserable.  And I am asking myself what I so often ask myself---Janey, how can I help you be happier?

An odd moment a few days ago got me thinking about what Janey wants and needs.  I showed her a video of Carly Fleischmann, a girl with autism who communicates by typing.  The video showed her at a coffee shop and illustrated the kind of frustration that builds up when you can't communicate verbally and there are all kinds of sounds and distractions.  Janey watched the video avidly.  Afterward, I told her that the girl in the video had autism, like she does, and that she couldn't talk with out loud words, and talked with typing.  I said maybe we could find some way to help Janey talk more easily, too.  Janey looked at me, with a look she only gets once in a long time, a look of clarity and directness, and said "I know how to talk".  I said "I know you do, but sometimes talking is hard for you.  That's why I'd like to find other ways to help you tell us things"  Janey again stared at me, and said, in a voice that was beyond firm, "I KNOW HOW TO TALK".

Janey has always resisted assisted communication type things---iPad programs, PECS type programs, typing, sign language---anything besides verbal talking.  I have always wondered how hard I should push her to use other ways to communicate, since her talking is often so limited.  But I feel like she has spoken, literally.  It was one of those weird moments---one that thinking back is almost hard to believe happened.  But it did.

And so, Janey, how CAN I help?  How can I better understand why you are so unhappy so much of the time?  Why did you cry and cry and cry today?  Why do you ask, a thousand times a day, to "go see Maryellen" or "Go see Auntie Carrie" when I've tried so hard to explain we can't at that moment?  Why do you want your bathing suit on all the time to go swimming, when we have no-place to swim?  Why do you ask me to snuggle you, and then lash out and hit me and scream when I do?  Why do you want to watch Little Bear, but cry every time we put it on?  Why do you resist toilet training so much?  Why do you bite your arm?  Why is it so hard, so very very very very hard, to keep you happy?

A little calmer, for a few minutes, walking with Daddy.

I would do anything to make Janey's life a happier one.  But I don't know what to do.  I have no idea what to do, most of the time.  And the days go by, and the weeks, and the years, and it's not getting any easier for any of us.

Third post of the day!

I've never written three posts in a day before now, and I don't think I ever will again, but I wanted to write about visiting Janey at Bradley Hospital while it was fresh in my mind.  I'm blogging lately for myself as much as anyone, to remember these eventful and challenging days accurately.

The couple pictures here are ones I found on the internet of Bradley.  You can't take pictures there yourself.  The room looks very similar to the common room of the ward Janey is on.  I'm not sure it's the exact same ward, but you can get an idea how nice it is.

We called this morning to make a time to meet with the staff at the hospital, and agreed on 11 am.  We left about 10, thinking the drive was an hour, but it was actually more like an hour and 15 minutes, which was fine, but good to know for the future.  It's a pretty drive at the end, through Providence, a city I've never spent much time in, although both my parents and my sister have lived there at points in their life.  It's great the hospital is south of Boston instead of north of it, as that avoids the horrible traffic that driving through the city always involves.

When we got to the hospital, we had to show ID at the main desk and wait for someone to come get us.  Everything is very, very secure there, which we don't mind at all.  It was striking at Boston Children's Hospital how very UN-secure everything was.  It was only on the weekend you had to show any kind of visitor's badge at all.  Anyone could walk into any room there pretty much unchallenged.  But at Bradley, that would not happen.

The social worker assigned to us came to get us, and we went into a meeting room.  There we talked for a long time to quite a few people---the psychiatrist that has been assigned to Janey, a speech therapist, an occupational therapist, someone I think was a behavior therapist and a few more people whose roles I am not sure about right now!  They asked us many, many good questions about Janey, things like what upsets her, what calms her, what her speech is like, how her behavior has recently changed, what medications she takes, how she is at school, how her sleep and eating area---all that.  Everyone was very understanding and respectful.  The process felt unrushed, unlike anything at all at the regular hospital.

After the long talk, we went to the ward to see Janey.  We had to put our things into a locker---my pocketbook, Tony's jacket, a clipboard---you can't take much of anything in with you.  I did bring in a big bag of clothes for Janey.  Once in the ward, we had to sign in again.  And then we saw Janey!  She looked very cheerful.  There was a relaxed smile on her face we hadn't seen for several weeks.  It was wonderful to see.

The rules of visiting are that we have to visit with Janey in her room, not in the common area.  Therefore, we stayed just a minute, because I couldn't bear to have Janey shut in a room again.  She was happy being active, and it was the middle of their day there.  She was about to have arts and crafts with other kids.  So we put away her clothes, gave her a few big hugs and said goodbye.

The hospital is very strict about talking to other children.  We saw a few boys who are on the ward with Janey, but the rules are that you can greet them if they greet you, but can't talk to them otherwise.  I can see the reasons for this, although I would love to get to know other children like Janey a bit more.

We got the feeling that Janey is already winning over the staff.  They had a few cute stories to tell about her already, including how they did the "Turkey Pokey", like the "Hokey Pokey", and that Janey loved that and did an impromptu solo dance and song after it was over.  I can see Janey being very happy there.  They will keep her busy and give her attention.  I think the question will be more---will this carry over?  Will we get help and ideas and medication changes and so on that will help us once she is home?  I am going to try hard for right now not to think about that, to just be glad she is in such a great place and to try to relax at home.  This is the respite we had wanted.   Not in the way we ever wanted to get it, but I still need to use this time to regroup mentally---between drives to Rhode Island.  I am certainly going to sleep well tonight, and I hope Janey does too, a whole state away from me.

Talking back to "I don't know how you do it"

Over the years, the phrase "I don't know how you do it!" has come up over and over in autism writing as probably the phrase autism parents most dislike hearing.  I admit at times it's bothered me a bit too, but lately, I've come to peace with it. It's struck me it's all in how you take hearing it, in what you hear when you hear it.   What do I mean by that?  Well...

Take it as a compliment   When people say the phrase, reword it in your mind as "Wow---you handled that meltdown/screaming/tantrum/obsession/biting/what have you  well!"  Assume the speaker is truly awed by your ability to deftly navigate the waters of autism.

Take it as a question  Think of it worded as "HOW do you do it?  Imagine that the speaker is truly wondering how you cope.  Use it as an opportunity for education.  Fill them in on some strategies you use, what techniques work to calm your child, what respite type services have been helpful, what educational strategies have worked best.  Turn them into an advocate by informing them what actually helps and works.

Take it as a confession  I think a lot of parents feel, secretly, that if they had had a child with severe special needs, they simply wouldn't have been able to deal with it---that they would have done whatever people do when they simply can't take it.  I often let people know that I felt that way too, before actually being faced with special needs parenting.  We learn as we go.  Despite lovely fables about parents being chosen from above to have a very special child, the truth is none of us are prepared for our special kids.  It's a tough on the job training, but I tell people they too would have done just fine if they had been "chosen".

Take it as an offer of help  This one can be fun.  Say something like "You know, I don't know how I do it either.  Thanks for noticing.  Yes, I'd LOVE your help.  When can you babysit?"  Seriously, the phrase can be an opening to admit sometimes we CAN'T do it alone, and we can use any help we can get.

Take it as shock  When people are faced with a situation they haven't seen before, one that seems overwhelming to them, they don't always know how to respond.  I've most often heard the phrase after Janey has severely melted down, has pulled out all her tricks like ear-piercing screaming and arm biting.  People just don't know what to say.  I think the phrase often is almost involuntary---a reaction to seeing behavior they have never seen before.

Take it as better than the alternative  What if people said instead "I could do that much better than you.  I can certainly see how you do it, because it looks very easy.  I don't know what the big deal with autism is.  It's a piece of cake"  I don't think most of us would like that much.  In a way, hearing the phrase is a badge of honor.  We are doing something tough, and we are being recognized for it.

Take it as a statement of love, for you and your child  The truth is, most times I've heard "I don't know how you do it", it was coming from someone who cares about me.  They might mean any of the meanings here, but they are saying it because they care.  Sometimes it's not the words that really matter, but the thought behind them, and sometimes, as with our kids, we have to read more than plain words to know what is being said.  Sometimes, we can answer without words too---just send back a shrug, a smile, a hug, a laugh.

None of us know how we do it.  We are like cartoon characters that walk off a cliff.  As long as we don't look down, we just keep going.  We might be defying the laws of physics, but we are doing it, one way or another.

Puzzlers

Janey likes to keep us guessing.  She's good for our brains that way, like they say if you do a lot of crossword puzzles it can stave off brain cell loss.  Here's a few of the unfathomable Janey questions...

1.  Why do legs always have to be straight?  Janey can't stand anyone's legs to be crossed, or tucked under them, or bent at all, really.  She won't freak out over this usualy---she'll just let you know, by trying to straighten them over and over and over and over, until it's just not worth it and you put your legs the way she wants them.

2.  Why do lights sometimes all have to be on and sometimes off?  When Janey wakes in the night, she needs to change the state of the lights.  If they are off (as I prefer), they all need to be turned on.  If they are on, often they need to be turned off.  One odd time she was asleep and we were up watching a movie.  She woke just for a minute, went over to the living room light and switched it off and then on, and then went straight back to bed and sleep.

3.  Why do tops sometimes need to be taken off and then put back on?  This morning was an example of that.  Janey took off her pajama top at least 10 times, and then came over to me screaming because she wanted it back on.  I did it without comment the first 9 times, but then tried to talk to her about it a little.  Not a good choice---her scream let me know this wasn't open for discussion.

4.  Why does Janey ask for certain TV shows and then freak out when you put them on?  This is a constant issue.  Janey will ask for, say, "Kipper's Playtime".  You put it on Netflix, and at the first bit of it, Janey will get hysterical, grab the Netflix remote and madly change the show, as if you were trying to force her to watch something horrible.  The same happens with books.  Janey will bring me a book to read, I start to read it, and all hell breaks loose.

5.  Why does Janey ask to have her nails cut---a grooming activity most kids don't like---constantly?

6.  Why do all pillows have to be on the floor?  I have been on a sewing machine frenzy, making throw type pillows.  Janey likes these, but she likes then to be on the floor.  No matter how often we put them back on the couch or bed, next time we look, they are all on the floor.

7.  Why does Janey twist up her fingers?  She so often puts them in the oddest positions, like pretzels.  It looks very uncomfortable to me.

8.  Why does Janey almost always ignore the cats?  It's like they are invisible.

I could probably go on for hours---there are so many little habits or behaviors of Janey I truly don't understand.  I am sure there are reasons, and I have some theories, but overall, they are a mystery.  It's one of the reasons I most wish I could communicate better with Janey.  I'd love to know the whys.

The Scream

The Scream.  How do I describe The Scream?  It's hard to capture in words.  Picture someone who has just been told the worst news possible, or something who is undergoing the most severe pain of their life.  Then picture it suddenly, unexpectedly, coming from a sweet looking nine year old blond girl.  That is Janey's Scream.

Last night was a scream-fest.  Tony picked up Janey at afterschool, and she started the scream on the way home in the car.  By the time Tony got home, he was shaken.  He looked like someone who had just witnessed something horrible.  I took over.  About every 3 minutes, Janey screamed.  She screamed like she was in pain beyond imagining.  Her whole body stiffened, she turned red, she put every ounce of energy into the scream.  It was bloodcurdling.  Between the screams, she was fairly normal---a little upset, demanding, but not too bad.  But then---the scream.

Of course we tried to figure it out.  Was she hungry?  Was she hurting?  Did something scary happen?  We ask the useless questions that never get answered.  We try to comfort her, but the screams seem to put her in some world beyond our reach.

Finally, I took her into the bathroom.  I latched the latch that is up high, that she can't reach.  I told her we would stay there until she stopped screaming.  I didn't try to stop the screaming beyond that.  Between screams, she reached for the latch, and I repeated we were going to stay where we were until the screaming stopped.  The latch seemed to give her a focus, and although she screamed a few times more, she calmed down.  I told her we could leave if she was done screaming, and she echoed "ARE YOU DONE SCREAMING?"  We left, and a minute later, the scream returned, so we went back into the bathroom.  She didn't fight me about going there.  She screamed a few more times, and then again asked to leave, and we did.  No more screaming.  She was fine.  She woke in the night a lot, as she so often does, but it was cheerful waking.

What does this scream mean?  What causes it?  I have no idea.  In some ways, it seems to have replaced the crying.  Maybe it's some strange kind of step forward.  Maybe it's an expression of frustration, as Janey starts to realize that she is not able to do what other kids can.  Maybe it's something she does just because she can, a way of saying "I'm here!"  I just don't know.  Like so much else with Janey, I just don't know.

Unlikely things autism has made me say

We never spill Cheerios all over Freddy's bed.  That's not funny!

We don't eat mayonaisse/ketchup/duck sauce all by itself.

Yes, she's eight.  No, she's not toilet trained.  Yes, I've tried all the methods out there.

No, I haven't put her on a gluten free diet.  

We NEVER take off our seat belt in the car and go into the front seat and hit Mama.

No, we can't go buy chips right now.  It's 3am.

Even if you put on your shoes nicely, we aren't going to the store right now.  It's 4am.

Please go back to sleep.  I'm not talking about chips any more.

Tony, could you just go buy her some damn chips?  It's 5am and I haven't slept.

No, I don't know what caused her autism.  Do you know what caused you to ask questions like that?

No, I don't think vaccines had anything to do with it.

Janey, please, if you make a stinky on the floor, tell Mama or Daddy about it.  Don't make us hunt it out.

If there were all kinds of great free respite services for autism out there, don't you think I'd be using them?

I really appreciate the thought, but a toy with 100 small pieces she could choke on is not really something we need, even if Janey does fall in the age range on the box.

No, I don't know how I do it either.  

That's enough pickled vegetables for today, Janey.

I know your dog wouldn't hurt a fly, but the fact you and others let dogs run free and knock down my daughter who is terrified of dogs has caused us to no longer be able to go to most parks.

Big girls don't take off all their clothes.

We just had two baths today.  That's enough baths.

We don't brush our teeth 20 times a day.

No, Janey doesn't really have any beer on ice and all her rowdy friends aren't coming over tonight.  She just is a Hank Jr. fan who \memorizes songs and sings them at random times.

Thank you, teachers and aides and therapists and staff of Janey's school.  I think I'd be dead without you, without a place to take Janey where I know she's safe and loved.  I wouldn't make it.  Literally.

Janey, I don't think it would be possible for me to love you any more than I do.  I wish you were going to have an easier life.  I wish you could communicate more.  I wish you could tell us what makes you sad.  But that doesn't change the fact that you are one amazing kid.

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!