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.

Middle of the Night Thoughts

No, Janey's not awake.  It's just me awake.  I've been having a lot of trouble sleeping the past few nights.  Thoughts and worries swirl around in my mind and keep me up.

Every day around 4, the new numbers come out for Massachusetts---how many new cases of COVID 19, and how many deaths in the past day.  Today, the death number was 252----the highest yet.  Somehow, that really hit me.  I kept thinking---what if a tornado, or hurricane, or blizzard, or flood hit our state and killed 252 people in a day?  It would be something we'd never forget, a horror, something we'd still talk about many years later, like the Worcester Tornado or the Blizzard of '78, weather legends in Massachusetts.  It feels in this case like a terror happening off camera.  We hear some stories, but mostly, it's unseen---deaths that are all someone's loved one, someone's parent or child or sister or brother, but that we only know as a number.  It's terrifying.

And of course, I fear most of all that it will hit us.  How could either Tony or I do the job of being Janey's parent without the other?  Or what if Janey got sick? Or the boys?

We don't go anyplace.  Not at all.  Tony takes Janey for a car ride to no-where a few times a day.  We play with her in the driveway.  She hasn't set foot outside our house, driveway or car for over a month.  She would not wear a mask.  She wouldn't wear a mask when quite literally her life depended on it, in the hospital after her appendix burst.  She touches everything---when I take her for a walk, she runs her hands along walls and fences.  It is not safe for her to go out.  Even outdoor places in this crowded state are filled with people, many not wearing masks.  So we stay home.

Janey is still doing remarkably well being at home.  She seems to be thriving.  She watches videos, watches Tony cook, eats all day (luckily, she loves healthy food), listens to music, runs around in the driveway.  Every day is quite similar, but she doesn't seem to mind.  It's a low stress life for her.  She doesn't really understand at all why we are home, and that is probably good.

A few times a week, Janey has a short, maybe 20 minute, Zoom meeting with her teacher or with her speech or ABA therapists.  Janey tolerates this, and even seems to enjoy it for a few minutes at a time.  However, starting next week it's going to be every day, for 2 hours.  I have very mixed feelings about this.  I know it's being done because special education students are not able to access the learning that other students are currently doing---online resources, worksheets, homework.  They need direct teaching.  But I can't picture Janey or most of her classmates doing very well with that much Zoom teaching time.  It's not that she can't watch a video for that long---goodness knows she can---or that her teachers aren't doing a fabulous job working on ways to engage her---they are amazing.  But it has to do with Janey just not quite getting it.  She gets school.  She's been going to school for a long time.  She knows how that works.  But someone on a screen talking to her and listening to her and expecting her to respond?  I think in her eyes it's some kind of enhanced video, one with a cast of people she happens to know.  It's fun for a few minutes, but not for extended periods.

However, it's not like there are really any other options.  School can't be held in person right now, and everyone is doing the best they can with that.  It's not easy for anyone.  In some ways, it's probably easier for Janey than for a lot of kids. Her lack of understanding of the crisis is a protection from worry.  Of course she has peers she likes at school, but it's not like I would have been at 15---absolutely crazed being away from my friends for this long.

What really keeps me up at night is how this is all going to play out long time.  People seem more divided than ever.  Instead of this pulling us all together, it seems to be pulling people apart.  That's crazy to me.  It's not a matter of politics here.  A virus has no politics.  But fear can cause divisions, anger, irrationality.  I can handle that.  But how I fear for Janey, and for all those out there who will always depend on others.  She needs a world that is secure enough to leave people feeling they can help others.  She needs a world that cares about people, not about the latest political feud or scoring points or getting elected or re-elected.  I don't think the extremes on either side of any political rift really understand that.  She literally needs someone to watch over her, and she always will.  And I can't sleep, because I don't think the world sees her, or all those like her, when they bicker and argue while in one day, in one state, over 250 people died.  God help us all.

Summer without summer school

A couple days ago, it occurred to me I'd barely thought about the fact that Janey wasn't in summer school.  It wasn't just that I didn't regret my decision not to send her---I barely remembered that usually she has gone. 

It's not that everything is perfect, but more that summer school always seemed to add more stress than it took away.  The first day, the bus showed up, although I'd sent back two forms saying she wasn't going, and also answered an automated phone call that way.  That shows about how organized summer school is.  The bus honked---45 minutes after the time the form I'd received (also after saying over and over she wasn't going) said the bus would get there.  I pictured the other summers, waiting out in the hot air for a bus that took forever to come, trying so hard to convince Janey not to go back inside and take off her shoes, trying to keep her calm and not screaming.  And then when she got home in the afternoon, dealing with her being very unhappy, most likely due to a program that just wasn't good.  And getting calls like the one I did last summer, from the only teacher so far I've ever encountered in the Boston schools that just didn't seem to like Janey, asking me if I had any ideas for keeping her from crying all day.  I did have an idea---and it was to take her out of summer school for the rest of the summer.  Next year, I'll try again, as Janey will be in a different program then, a pre-high school one (hard to believe).  But for now, I am quite sure I made the right decision.

What have we been doing?  Not as much as I planned to, as always.  I've tried to get Janey out of the house some every day, and mostly, we have---maybe not to exciting places, but to stores or fast food or errands.  We also do our daily walk to the "ice cream store" for chips.  We play outside after that walk.  Up until this week, Janey was napping a fair amount (and still sleeping at night).  She needs a lot of sleep, and I don't think she always gets as much as she needs during the school year, despite a bedtime of 7pm (which is her choice---not one we enforce!)  She watches plenty of videos, and we snuggle a lot.

The thing we've been doing I love the most is reading.  I've always read to Janey, of course---books are my life, and I love to read aloud to my kids.  But Janey didn't always want to hear what I had to read, or she just wanted the same book over and over and over until I couldn't take it any more.  Her teacher told me about a way she had been getting Janey to pick books and listen to them more, and I have been using a modified version of that.  I pick out three books I'd like to read to her, and ask her which one she wants.  She picks one, I read it, and then I set it aside and show her the other two, and ask again.  I read her next choice, and then lastly read the third one without asking.  Usually she doesn't want to hear all of the third one, which is fine, but sometimes she does.  Then I ask her if she wants any of them again, and often she re-picks the first choice.  Then I put the books back on the shelf.

Today I tried something new---reading her a chapter book.  I picked "Betsy-Tacy" by Maud Hart Lovelace, one of my favorite books and the start of a great series.  She listened a bit, and then did something that I loved.  She said "I want...I want...bones!  Bad!"  I knew right away what she meant.  She wanted to hear a book we've been reading a lot, "Katie Loves the Kittens" by John Himmelman.  The cool thing is that the book is about a dog, but doesn't have a bone or the word bone in it, and Katie the Dog is a little naughty, but no-one calls her bad.  Janey just picked the words to describe the book that related to it---"bone" for a dog and "bad" for how Katie scares the kittens by mistake!  It's very rare Janey forms a totally new request like that, one that shows she understood the book and wanted it enough to work hard to tell me what she wanted!

We've had our share of tough times, of course.  One day, Janey had been napping and Freddy and I were watching something on TV.  When Janey woke up, she wanted her own show and she wanted it RIGHT NOW.  I told her she could watch it when we were done, and she started screaming.  I said "You know, Janey, you are being a little selfish"  Evidently, that was not good for me to say.  Janey screamed loudly for a long time.  I gave her a shower, which usually calms her down, but it didn't, this time.  Then I snuggled on the bed with her, with some screaming still going on.  I did what a do a lot---tried to give her words for what she was feeling.  I said "You know, it's okay if you want to say 'I am very angry at you, Mama!  I didn't like what you did, Mama!' You can even say 'I hate you, Mama!''

Well, that is just what she did want to say, I guess.  She immediately said "I hate you, Mama!"  She said it like she meant it, and I am pretty sure she did.  Then she said it about five more times, in an ice cold, angry voice.

I had a mixture of emotions.  I was very glad she was expressing how she felt!  But at the same time, it was something I've never really heard from her before, and I'm pretty sure never from the boys (there seems to be less of that kind of drama with boys!)  It surprised me that I felt hurt---but that is part of being a mother, especially of a teenaged girl, and it's part of how Janey is in many ways no different than any other 13 year old, especially when they are spending large amounts of time with their mother.

Most of the time, though, Janey still seems to like me fairly well, and although some days I'm quite (extremely) glad to see Tony coming home from work so I can collapse for a while, we are getting through the summer in pretty good form.  I hope Janey would agree with me.

Janey's 11th first day of school

Janey started 7th grade today.  When I sat down to count, it surprised me a bit that it was first day of school number 11 for her.  She started 3 year old kindergarten just after she turned 3, and she went to 5 year old kindergarten twice...it all adds up to 11 first days of school.

I'll have to say, of all those first days, today might be the one I felt the most anxious about.  That seems counter-intuitive, but it's true.  Mostly, this is because of how summer school went.  Janey seemed truly unhappy for the first extended time at school.  She resisted the bus, she came home seeming upset every day, and eventually, when her teacher told me she was having a very hard time getting through the days, I took her out for the last week or so.  I think I should have done so sooner.  After about a week to decompress, we saw the happy Janey again.  We went on our long trip to take William to Chicago and to see my dear friend Michelle and her family in Ohio, and Janey was amazing.  The only really rough times were when we cruelly tried to get her to use the bathroom at rest stops before eating.  Once we stopped doing that, she was happy almost the whole time.  She slept well in the hotels, traveled, made herself at home at Michelle's house, listened to a ton of music, all that.  We reflected that we didn't think a trip with a more typical 13 year old would have been as tear-free!

I spent a lot of time the last few days thinking about the contrast between the time Janey was in summer school and the trip.  It can sometimes feel, in the midst of Janey being unhappy, that that is just her default state, that what we do makes no difference.  But that's not true.  Of course, we can't go on trips every day, but the things the trip featured---novelty within a familiar framework, tons of music, exercise she enjoyed (playing in hotel pools), much one on one attention---those are proven ingredients for a happy Janey.  And as Janey gets older, it seems like school gives her less and less of what makes her happy.

Of course, the standard response to that would be "school is meant for learning, not entertainment".  And my response back---well, it's been 11 years now.  And Janey hasn't shown she wants or is able to learn what the schools have to teach.  It's not for lack of good teachers or lack of trying.  Most kids in her program DO learn.  They learn to read and write and do math.  They do amazingly well.  I think Janey has spoken.  She's not interested in that kind of learning.  And as she gets older and diverges more from even the standard autism path, it might be getting harder for her to find the level of comfort at school she needs to be relaxed enough to learn at all.

So---what can I do?  I don't think the school I imagine for Janey exists.  I'm not even sure myself what I picture the school being.  Or if what I picture even is a school.  But I can picture what she'd love---a place where she could be outside as much as possible, where she could have access to music at all times, where she would go on excursions to parks, take rides on buses and trains, play in water, rest when she was tired, be read to and look at books, work on basic cooking, be taken to stores and helped to purchase items, be encouraged gently to talk more...that's my dream.

And you might have had the thought I've had.  That sounds like home schooling.  And that has crossed my mind.  But, to a person, everyone who has spent time with Janey has emphatically said to me what I know to be the truth---I couldn't do it.  Not just I don't want to do it---I couldn't, physically or mentally.  Healthwise, I could not make it without the respite that school provides.  Mentally and physically, doing it all alone, I would very quickly be too tired to provide the atmosphere Janey would thrive in.  I know that.  During the weeks this summer we were at home and she was not at school, I was drained beyond what I can explain.  We wound up staying home with Janey watching videos, with a daily walk to get ice cream.  That's all I could do.  That is not what Janey needs.

What happens when No Child Left Behind leaves your child behind?  I know that the schools are required to try to teach Janey, and I know for so many kids, that is a good thing, that there are kids that in the past would not have been offered the chance to learn to read or write that are thriving with that chance.  But in our quest to give each child a chance, can the vision of success be expanded?  Can we give Janey and the other Janeys out there the chance to be the best they can be, even if that best requires a very different kind of school environment?  That is what I am going to be trying to figure out.

A Tale of Two Weeks

As we put Janey on the bus this morning, watching her sing and skip her way happily out the door, we shook our heads when thinking of how drastically her behavior can change from one week to the next.

Last week, for about 5 of the days anyway, was incredibly tough.  Janey was screaming almost from morning to night.  Nothing made her happy.  She wanted only to watch videos, and then to frantically change to another video the moment the first one started, and to ask for food and then want a different food the minute we got it.  Even car rides, usually the last resort that always works, didn't always work.  We were in despair.

And then---a transition period leading to back to school.  This week, I've gotten good reports from school every day, and home has been a delight.  Truly, truly a delight.  Janey is all smiles.  We are having a huge amount of fun with her.  She's getting into new music every day, and last night, coming back from a ride with Tony, they were both singing songs and laughing, bonding in a way that had nothing to do with autism and everything to do with just liking the same things.  The few times she's gotten a little upset, one play of her favorite new song (Immigrant Song by Led Zeppelin) has cheered her right up.

Janey's school, not fancy, but a great place

What happened to cause the huge turnaround?  Well, the big one is school.  Janey is far happier with a school routine.  Her teacher, Ms. Erin, is great, as are all the staff members I've met.  Janey is a challenge, even in her autism-only program.  But they meet the challenge and constantly think of new ways to work with her.  And we, having the time she is at school to regroup, do better dealing with her once she gets home.  I think other factors helped Janey move out of her funk, too.  One was me going away, and just having a change of parenting for a bit, and then going on an overnight treat trip to the great inn we were at.  The weather made a difference.  Janey needs to be outdoors as much as possible, running around.  But all that doesn't quite explain the change.

I think a good percentage of what drives Janey to be happy or be sad is something we just don't get.  She might have pains she can't explain to us.  There might be something worrying her that she has no way to tell us.  She might be having a flare-up of OCD type thoughts and needs---that seemed to be showing itself in the subtle ways it does with her last week.  She could be bored.  She could be angry.  She could just be a pre-teen annoyed with having to spend so much time with her parents.  Often, there is just no way to know.

Tony and I talked this morning about how we should approach another tough spell.  There are some things we can do.  One big one is changing things up.  If she's in a terrible stretch, maybe we can somehow go away for a night, or take her on a big day trip somewhere new.  We can, if the weather at all permits, get her to a beach---that seems like therapy to her (and to us)  We can't make school start back up, or help her with issues we don't know are happening, but we can ride it all out, with hope that it won't last forever.  That might be the key.  When you are in the middle of a horrible week, it is hard to see past it, or to remember there was ever better times.  But the bad times, overall, are not as frequent as they once were, and spring is coming.  We'll get through this winter.

Inexplicable Screaming

Here's a picture of Janey outside.  She is completely happy, having a wonderful time.  We are all playing with a remote control toy in the glorious fall afternoon.

Here is Janey literally seconds later.  She is screaming, as loudly as it's possible to scream, the scream that anyone hearing would be forgiven in thinking is the scream of someone badly hurt.

What happened in between?  Nothing.  Nothing at all.  I challenge even the most devoted believer in behaviorism to figure that scream out.  It had no trigger.  No external trigger, anyway.

What happens?  Does Janey remember something that upsets her?  Does she picture some way things might go very wrong?  Does she just feel like screaming?

This scream, this scream I don't even think you can picture unless you've heard it, keeps us from doing so much.  We had to come inside when she started screaming.  We have no choice.  We have to leave a store if she screams there, leave a restaurant, leave anyplace.  And lest that seem like the reason for her screaming, often, as soon as we leave, she screams again.  There is no pattern we can figure out.

Now, a short time later, Janey is perfectly happy.  She moves on fast.  We don't.  I want to understand the screaming.  I want to help my sweet girl with whatever makes her so very sad, or angry, or scared.  I would do anything to help her, if only I knew what to do.

Downs and Ups and Downs

With Janey, part of what makes every day an adventure is you don't know which Janey you're going to get that day.  That's been particularly so this past week.  Usually, Janey's moods last a few weeks or so, but lately, they have picked up the pace and seem to change every few days.  It's emotionally a roller coaster.

Last Friday was a very tough day.  Janey got home from summer school about 3.  She had had some tough times all week after school.  I spent a lot of the day Friday while she was at school trying to think of strategies to help the couple hours between when she gets home and when Daddy gets home be happier ones for her.  I planned out a list of things we could do, depending on what she wanted---lots of snuggling, watching videos together, having a shower, playing outside, eating, reading---whatever she wanted.  I planned to be totally at her disposal, or to just let her rest, if that is what she wanted.  I was determined it would be a good afternoon.  Well, she got off the bus crying, and things deteriorated from there.  She wanted to do nothing I had planned.  She wanted to scream.  Between screams, she wanted to SAY she wanted something, like a drink, a snuggle, a shower, time outside, and then as soon as I tried to do that thing with her, she wanted to scream some more, and bite her arm, and fling herself down on her bed, and be hysterical.  I was tired out of my mind after half an hour or so.  In frustration, I finally yelled out "I can't take this any more!"  That stopped her cold---she seemed interested in the phrase, one I don't think I've ever said to her before.  I really don't like saying things like that to her, ever.  She took it up herself, and started adding it into her screams---a good long scream, and then "I CAN'T TAKE THIS ANY MORE!"  Which I bet she couldn't.  I finally just kind of gave up---I let her scream it out, while of course keeping a close eye on her to make sure she didn't hurt herself or try to leave the house or anything.  Tony got home, and she instantly dried her tears and hugged him.  I felt about 2 feet tall.  

So....I wasn't much looking forward to how the day would go Saturday.  However, somehow, by some twist of fate or miracle, both Saturday and Sunday were amazing.  It was probably the best weekend we've ever had with Janey.  Ever.  She was extremely happy, extremely engaged, full of hugs, saying all kinds of cool and relevant things, a joy beyond words.  I have no idea why, any more than I have any idea why Friday afternoon was so awful.  I've been trying very hard lately to live in the moment--to not spend the bad moments projecting into the future, to not spend the good moments worrying they won't last---to just accept each moment as it comes.  I've got a long way to go with that, and I am sure I did spend too much of the weekend trying to record in my mind just what circumstances had led to things being so good.  However, I don't think it was anything in particular.  It was as random as any mood of Janey's.  But it was wonderful.  We drove her brother to work both days, and she piped up in the car with comments here and there "Maybe we are lost!"  "Pepperoni Pizza!", and with songs and just happy, non-manic laughter.  We got her some pizza, and she sang "Staying Alive" to the cashier and charmed her.  We went into the Target and tried on hats and glasses and necklaces.  We went to the arboretum near us and looked at trees.  We snuggled a lot, watched some TV, ate a lot, all the glow of her wonderful mood.  At one point, in the car, Tony and I said to each other that when she is in that kind of mood, there is no child on earth more wonderful.  I remarked that if she was ALWAYS in that good a mood, we probably would be used to it.  It wouldn't seem as wondrous.  And we both got teary-eyed, thinking of that.

So...Monday was okay.  Not as happy a day, but okay.  And then today---after school, it was another Friday.  So much screaming and crying and arm biting.  It was hot, and I offered to fill the wading pool.  Janey wanted to, but as soon as we got back there, the ear-shattering screaming started.  For a few minutes, I still tried to fill the pool.  But I couldn't for long.  Her screaming is loud enough to be heard a block away.  It sounds like she's being tortured.  I turned off the water and took her in, where she continued to scream pretty much until Daddy got home, and this time, even Daddy couldn't fit it.  She screamed off and on all evening.

Now she is asleep, and I am weary but unable to sleep.  I wish so much I understood my little girl better.  I wish I could figure out how to give her more happy days.  Seeing how very, very happy she can be, it sometimes makes it almost harder, because I feel like there must be a key someplace.  There must be a way to pry open the door to the happiness that seems to snap shut suddenly and randomly.  But I don't know how.  And she can't tell me.  

NO MORE CHOCOLATE EVER...that's the plan, anyway...

I am a slow learner at times.  If you look at all my posts with the tag chocolate (which you can do here, if you are in the mood), you will see that over and over and over, we have been shown that chocolate has a huge effect on Janey.  It makes her not sleep, it makes her manic, it makes her crazy.  And still, we sometimes let her have chocolate.  I am not sure why, except that she loves it, and that chocolate is all over.  It's a tough thing to totally eliminate.  Another reason, which probably gets more to the root of it, is that I am for whatever reason always overly skeptical of food allergies or sensitivities.  I am not sure why.  My mother and sister have food allergies, which I have seen in action, and I know some food allergies can be deadly.  But still, I continue to follow my general middle of the road type philosophy---a little bit of anything non-poisonous doesn't really hurt.  Well, with all of you as my witness, I am finally going to try to get serious about chocolate.  NO MORE CHOCOLATE FOR JANEY.

Here's what went down.  On Wednesday, when I took William to work at Whole Foods, Janey and I went in for a bit to get a few things.  She spotted something we'd bought a long time ago---a 12 pack of organic chocolate milk boxes.  I said no, not so much for the chocolate but because I wasn't really there for a big shop.  She handled it.  But then Thursday, again we went into the store, and she led me straight to the chocolate milk, and said "I want chocolate milk.  I want to buy that.  Put it in the cart"  That is a very, very unusually good string of sentences for Janey, and it is almost impossible for me to refuse her when she works that hard to tell me what she wants.  So I bought them.  I wasn't even thinking about how chocolate affects her, believe it or not.  I didn't think she'd really drink much of the milk.  She's been off chocolate milk and milk in general for a while.  However, she surprised me by being VERY into the milk.  In the course of Thursday, she probably had 6 servings of it.  Which I allowed.  Because I am not very quick on the uptake, or something.

So-----Thursday night into Friday.  About 3 hours of sleep, tons of screaming, agitation, tears and fits..  Friday, the 4th---a day from hell.  Screaming all day, no nap really although she hadn't slept, the worst day we'd had in months.  Friday night---very little sleep again.  Also Friday night---finally, the realization---this might have something to do with all the chocolate milk.  The milk was hidden.  Saturday morning---still hellish.  Screaming at the store until we had to leave, screaming at home until we all felt ready to cry.  In desperation, I took Janey for an outing to the Trailside Museum, a little outside zoo/nature preserve near Blue Hill, close to us.  And finally, I think the chocolate was out of her system, or walking around outside helped it get out.  She was a delight, happy and cheerful.  And was so the rest of the day.  And she napped.  And she slept well last night.  And she woke up happy.

Of course, because I am a skeptic, I still am not sure of the connection, but I'm surer than I've ever been about a food connection.  For whatever reason, Janey just can't handle chocolate.  This isn't the case for caffeine. in general.  We often let Janey have some coffee (which is something very common in Italian culture) and although I am not big on soda, she has certainly had a Coke or two, and this doesn't seem to affect her at all.  It's just chocolate.  And even a very small amount, like a few M&Ms, can set her off.  I don't know what might be in chocolate that isn't in other things, but there must be something.

So, from now on, we are going to treat chocolate like she has an allergy to it.  We will not have chocolate in the house.  I will ask the schools not to give her chocolate.  We won't buy chocolate anything.  That won't be hard for me, as I am not a big chocolate fan, but Tony loves it, and the boys like it pretty well, but they can still have it, out of the house.  We'll see how it works out.  If it prevents days like we had this week, it's a small price to pay.

Including those who will never catch up

I got to Janey's school a little early today.  I try to do that now and then, although morning sluggishness and traffic often prevent it, but Janey loves the extra time to run around outside a bit.  Today was beautiful, a lovely fall day.  The morning play area was covered with leaves and sticks and acorns and all the things kids love like that.  Some boys were playing football.  Most everyone had on something Red Sox, in support of the home team playing in the Series tonight.  It was one of those great Boston mornings.  Janey was very happy running around.  Every now and then she'd stop to pick up a leaf, or hold a stick, but mostly she ran, ran among the other kids, never quite interacting but still, I think, very aware of what was around her.

It made me think about inclusion, and how as kids get older, support for it seems to melt away among professionals advising parents.  I've heard quite a few times now from professionals saying that inclusion isn't right for Janey, that she would be better served in a classroom specifically for autistic kids.  I get the feeling that most people think inclusion is fine for little kids, but that when the kids are older, it doesn't benefit either the disabled child or their classmates.

I think this reflects society as a whole.  We embrace, often, disabled children, but disabled teens or adults make us uneasy.  There's probably a couple reasons for that.  One is that we like to think we can "fix" kids.  Sure, let them take a while to catch up.  Let them be around other kids, and have it "cure" them.   In time, they will be just like everyone else!  They just need lots of love and patience!  The other reason is kind of a vicious circle.  Very few "normal" teens or adults spend much time with disabled people their own age, and that leads to fear and maybe even sometimes disgust.  "Look, that big girl can't talk!  She's making strange noises and waving her arms around!  We better steer clear of her!"  We're more tolerant of a range of odd behaviors in the young.

But as I watched Janey today, I thought about how important it is for inclusion to continue to be her life as she gets older, if at all possible.  The reasons for this might be different than when she was younger.  She's not going to catch up.  She is probably understanding less and less of the mainstream curriculum.  She's not going to suddenly be able to make meaningful friendships with the kids in her class.  But in a way, that's all the more reason to have her around them.  I want her to sense the Red Sox excitement, to watch the boys toss a football, to hear the excited chatter of early morning kids.  I want her to have the fullest life she can, and because it's harder for her to access life's everyday joys than most, she needs to be around them MORE, not less.  And it works both ways.  As the kids she goes to school with get older, they are probably noticing her differences a lot more, and working out in their own minds what is going on with her.  By seeing her every day, by being familiar with how she acts and what makes her happy and sad, they are learning that we don't just include people when they are little and cute.  We include them for life, because they are human beings just like us, deserving of a full and interesting and meaningful life.

It seems like there is a point, an invisible line, where many professionals give up.  They seem to say "We gave it a shot.  It didn't work.  She's never going to be part of real life.  It's time to give up on that and find a place for her away from everyone else"  I'm sure they would never consciously say that, but I've sensed a change of attitude from the medical and psychiatric professions.  Not from her school, not from her teachers or administrators  or aides or even the other students, but from the "experts".  Maybe she represents a failure to them, someone that didn't get fixed.  But watching her today, happy among the rest of the kids, content to be living life on her own terms, I think she deserves a chance to be included for life.

The TV Standoff

About a month ago, Janey started turning off the TV any time something was on that she didn't want to see any more.  This would be fine, but she then turns it back on, turns it off, turns it on, all in rapid succession.  This isn't great for the TV, and is also pretty annoying, and it doesn't make her happy either---it sends her into a fury.  So we made a rule.  If the TV gets turned off, we unplug it.  No more TV for a while.  We are very consistent about it, and very firm.  So...you'd think that the problem would be quickly solved.  You'd think wrong.

Janey likes TV and videos a lot, sort of.  It's more like a love/hate relationship.  She likes certain shows VERY much, like Kipper.  However, after watching any show much, there are certain parts she likes and certain parts that scare her, or just bug her.  She used to get to those parts, and then ask us to watch something else, but I guess the turning off of the TV was a more direct way to handle the problem.  So we made our stand.  Basically, all it has done is stopped any TV  watching from happening.  If the TV is on, Janey pretty much immediately turns it off, we unplug it, she screams, and then eventually stops asking for it for a bit, then asks again, and after it's been a while, like two or three hours, we go over the rules again, put something else on, and she turns it right off.

I've always wanted to be the kind of mother with kids that just don't watch TV, but over the years, I've realized that I really don't care that much.  I think kids self-regulate, as long as you don't let it be all there is to do.  William watched a ton of TV when he was younger.  As he got older, homework and guitar took over his life, and he watched very little.  When he did, it was a history show.  Freddy never watched much TV.  He and I get into a few shows together---we were big Breaking Bad fans--and we love watching them, but TV was never his thing.  Janey liked TV more from the start.  I think a lot of kids with autism do, and I think they learn a lot from it, especially videos, which are always the same and which can teach in a way she relates to.  She isn't TV obsessed, but to be honest, there isn't a lot else that she enjoys as an indoor activity. She doesn't like to be read to, she doesn't know how to draw, she has next to no interest in toys.  We listen to and sing a lot of music, and I try very hard to engage her in other things, but TV has always been a big part of her life, and I've come to the point where I don't feel like I have to apologize for that.

And now, if we keep standing our ground on the TV turning off, there isn't any more TV.  Even if we don't, the TV is going to break from constant off and on, and we aren't in a great position right now to get a new one.  What do we do?  This reminds me of the taking clothes off outdoors standoff.  Janey can't take off her clothes outside---we are firm on that.  If she does, we bring her straight inside, which she hates.  She loves being outside.  But for a while this summer, she constantly took off her clothes almost the minute she got outside.  I don't think she really got it.  But we couldn't really compromise.  I think it was more that she got out of the habit finally than she accepted the limit, as she still occasionally does take off her clothes, and we go inside.

These stand-offs are another example of how "normal" parenting techniques just don't work with Janey, much of the time.  She doesn't really seem to get consequences. She has no desire to please us.  She isn't very good at thinking out how her actions will play out.  And so, although she very much wants her Kipper or Sing-A-Longs or Yo Gabba Gabba or whatever, she can't seem to figure out what she needs to do to still be able to watch them, just as she doesn't seem to get why taking off her clothes leads to an end of outside time.  Common sense would say that if we stand firm long enough, it will work, but common sense is not always right.  Even I am starting to miss Kipper the Dog.

The trip to Maine---a (mostly) success story!

When the boys were little, we did a lot of little getaway trips.  Not a lot of long vacations to real destinations, but quite of a lot of trips where we'd find a cheap hotel deal and spend a few days in a new location, visiting friends or family.  But for the last five years, we have taken no trips like that.  None.  We have not gone away as a family in that time for more than a few quick, close overnight twice.  We haven't been more than 100 miles from home as a family, or gone more than one night.  About a month ago, when Janey was doing pretty well, I decided I very much wanted to try a little trip.  I grew up in Maine, and Maine in the summer is a special place.  I wanted Janey to at least have a day, or even an afternoon, playing outside in the Maine summer.  My parents live in Maine, and I set my goal at a day at their house.  I reserved a hotel about half an hour from them (because close hotels, near the coast, are out of our price range in the summer), for two nights, and set aside 3 days for the trip.  I wanted us to have a full day for travel both ways, although it's about a 4 hour drive, so that if we needed to stop 50 times, we could.  I wanted to have very, very few plans, so that our main focus could be on letting Janey relax and hopefully enjoy the trip.  I felt like if this went well, and she saw that going away could be fun, it would be a good start to expanding our horizons a little.  But if it didn't, it might be the end of that part of our lives for a good long time.

Then came the hell weeks, which you've probably read about here.  I thought over and over about cancelling the reservations.  I thought there was no way that this would work, that her crying would get us kicked out of the hotel, that she would destroy my parents' house, that her behavior in the car would make us unable to drive.  However, once the new medication had shown a little promise, I thought we might as well give it a try after all.

Well, I'd call it a modest success.  The ride up was quite good.  Janey didn't cry AT ALL until the last 5 miles or so!  She did sleep a lot, still tired from the medication at that point, and she wasn't terribly smiley or happy, but she was not crying.  Here's a picture of her at a rest stop...

having some ice cream.  We made it to the hotel well before I ever thought we would---we only stopped about 3 times, as much for us as for Janey.  I was worried how Janey would react to the hotel, but we kept talking up how we were going to go swimming as soon as we got there, and we did...

The pool was only 4 feet deep, was outside and full of bugs and very cold, but we swam!  Janey was fairly happy to swim---not as excited as that sometimes makes her, but happy.  We spent the rest of that day in the hotel room, just hanging out (although I got to go out to dinner with my dear friend Julie while the rest hung out!).  Tony got to watch baseball with Freddy (we don't have cable at home to see it) and Janey got to go about 5 times to the "chips machine", the vending machine, and get chips.  I figured that if that's what meant vacation to her, then getting a lot of chips (which she wasn't really so much into eating, just getting!) was fine.  She also enjoyed pushing the buttons on the elevator.  She didn't sleep at all well that night, though, probably from sleeping in the car a lot, but she wasn't screaming---just wandering the room and enjoying some cable.

The next day, we went to the hotel breakfast and then to my parents' house, and as I had hoped, it was a beautiful day and Janey had a wonderful time outside.  She was able to wander around their big, wooded yard and to walk down their dirt road, and to pick wildflowers and see all the bugs and just enjoy that smell of Maine in the summer.   Here's a few pictures...

I wish she had been more excited or happier---she seemed subdued, but she wasn't crying, mostly, and I think she was partly subdued just taking it all in.  For a girl that loves outdoors, having that much of it just to look at and walk around in was probably almost overwhelming.  She liked a few of the toys my mother had saved for her---here's her enjoying a Clifford book on the deck...

and overall, I felt very happy that I was able to give her that day, a tiny piece of my summers in Maine.  As soon as we were all getting a little tired, we left, while everyone was still in a good mood.  We went back to the hotel, and lucky me got to AGAIN go out to dinner with my friend---another great part of the trip, getting some time to just talk and laugh and be silly with a dear friend!  Janey slept better that night.

Today when Janey woke up, I saw a Janey I hadn't seen in quite a while, and was very happy to see back---a smiling, laughing, energetic, funny girl.  She was in one of the best moods of the summer---singing her song parodies, thrilled about anything we were doing, even little things like going to the hotel breakfast...

just being the Janey in what we call her "precious" mood---one of the times I can't possible imagine enjoying her more.  They are rare, but I had worried the medication might take them away, make her quieter and more subdued all the time.  I love my lively girl when she's a happy lively girl!  

The drive home wasn't fantastic.  I think Janey had had enough of driving, or maybe she was realizing the "jolly holiday" (a term she picked out of a Mary Poppins sing-a-long song to define our trip) was over.  She cried a fair amount, and we stopped less---perhaps we should have stopped more, but I think we thought by that time just getting home would be best.  Here's a picture from one stop, with a moose...

Janey wasn't in the best mood, but she agreed to pose!  

So I'd say overall, a success.  I wish Janey had been happier more of the time, not just not crying but actually happy, but there were certainly happy times, and we made it!  I was able to get some time out, and my parents were able to see Janey and Freddy (this also marked our first family trip without William, as he is at college, and incidentally having a better time than he ever realized it was possible to have, by his reports).  I think we'll try to do it again fairly soon.  It felt good to be a little back on the road again.

The Back Yard

Today has felt a lot better than yesterday.  Janey has cried a little less, but a lot of it is just me trying very hard not to be negative.  When she cried some this afternoon, I worked hard to keep my voice upbeat, and said as cheerily as I could "Let me know when you ready what is upsetting you or what you need, and I'll help" and I walked away a bit.  A few times she did (cheese, go outside) but other times she just cried a while and then stopped.  And I kept my sanity.

Going outside is Janey's favorite thing, with the possible exception of music.  She loves to be in the back yard.  This afternoon, I took a bunch of pictures of her, for fun and to show what DOES make her happy, as so much of this blog is about what DOESN'T make her happy!  Our back yard isn't a showplace, but it's fairly good sized for a city yard.  It's on a slope, which doesn't bother Janey---she likes running up and down the little hill.  The times when Janey is outside, making up her own games and just enjoying nature, are the times she most reminds me of myself as a girl.  That's what I did, every available moment.  I love seeing Janey play in a way I completely can relate to!

                                                     Janey looking at the grape vines....

Making up a game with a ball and a bucket

Examining a bunch of leaves

Jumping for joy

My sweetheart in the sun

And here's a few bonus pictures.  The first shows a habit that Janey does all the time---pulling on the side of her eye.  I'd be curious if any other girls (or boys) with autism do this.

And here's a picture of Janey's toes.  Ignore the dirty feet---this is after running around barefoot!  What I wanted to point out there is the left foot (which is to the right in the picture!), how the 2nd and 3rd toes are mildly joined, like they have a common root.  They sometimes also overlap.  I've looked this up, and saw it was connected to a few genetic things, and I was wondering if any of your kids have toes like hers?

Summer blues

Janey is watching Curious George, which has become my 7-7:30 morning respite time.  She has no interest in it other times of the day, just that morning block!  And I am gearing up for the first day of summer.

I've never liked summer.  As far back as I can remember, the first day of summer felt like panic to me.  I like a schedule, blocks of time filled with predictable activities.  I enjoy the weekend, and holidays, but summer---that's a long time.  Couple that with my extreme dislike of hot weather, and even as a girl growing up in coastal Maine, probably the ideal summer location in the world, I didn't like summer.

With Janey, that feeling has grown.  Janey loves school.  There is barely a day she doesn't get excited to head out the door to school.  Every time I tell her it's a school day, she looks like I've offered her a huge treat.  This morning, I told her that school was all done for now.  She'll start summer school in a week or so, but that is never quite the same.  This week is open.

I feel sometimes like the worst mother in the world in how much I dread open weeks like this with Janey.  It's not that I don't want to be around her.  More and more, I love being around her.  But unfilled days for Janey are not lazy or idyllic or creative.  They are very tough.  Janey needs to be watched every single second.  She needs to be kept busy, or she either gets upset or retreats into a repetitive activity like seeking out paper to eat or things to spill.  Keeping her busy wouldn't be hard if there were more I could do with her alone.  But taking her on any kind of outing, like to the beach or a park or a museum, is not a one person job.  She is a runner, and I am not as fast as her any more.  She really needs at least two eyes on her, and one of them has to be pretty physically fit.  I still can take her to the store, but she hates stores except for grocery or drug stores.  I plan to do a grocery shop soon, but that doesn't fill up much of the day.  The few times I've tried taking her clothes shopping or browsing a craft store or the like---disasters. (read about one trip I particularly remember here)  She will tolerate being read to more and more, but not for more than about 10 minutes in a row.  She'll play with her iPad, but also, not for long periods of time, and she'll watch TV or videos, but aside from the fact I don't want her electronically entertained all day, she is too restless to do that for much time in a row also.

What do we do?  We often spend a lot of the day in the back yard.  If Janey has water and dirt to combine into mud, she's usually pretty happy.  But today is rainy and thundery, and even on days that aren't, after a bit Janey is soaked and filthy and we need to come in.  Often, I then turn to a long bath time, but Janey no longer is as interested in long baths.  So we piece together a day.  We read a little here, dance to music a little there, snuggle and sing a little, watch a bit of TV, eat, go to the grocery store, bug her brothers, pat the cats---and it's still 10 am and there's a lot of day left.

What would most 8 year olds do in the summer?  Well, most 8 year olds would have friends to play with.  With older brothers like Janey, they would have gotten into video games and would be playing them.  They would know how to read, and we could go to the library every day.  They would be able to entertain themselves with drawing or crafts.  They would be able to go to camp.  We could go to the beach, just the two of us.  We could go to playgrounds without the fear of them running away.  I feel guilty, as I always feel guilty, that I dread a day alone with Janey so much.  But thinking of it that way, I do see that a day with Janey is not a day with most 8 year olds.  There is never one adult alone all day at school responsible for Janey.  In the course of the day, she might be under the care of 6 or 7 different teachers, aides, therapists, etc.  They do a wonderful job, and I am extremely grateful for them.  I can't do their job alone.

And I worry I am coming across as complaining about caring for my own child.  Although it might sound that way, it's not the case. It is my job to be with Janey, and my joy.  But I wish for her that there were more options open for her open days.

Dogs

Yesterday I took Janey to a farmer's market near us.  She has been cheerful the last week or so, and she was so at the market---walking around, looking at things, content as long as I kept moving.  William came along with us, and once we had looked at most everything, I wanted to go over to where he was and leave.  However, that became impossible, due to Janey's phobia of dogs.

I have no idea why Janey is scared of dogs.  She used to LOVE them, as a 2 year old, even though we are not really dog people.  She would seek out dogs wherever they were and no matter how big or scary looking the dog was, she'd go right over to it and show it some love.  Then her regression came, and for years, it was like animals didn't even exist.  She paid no attention to them one way or the other.  Finally, she started to give our cats a tiny bit of recognition, sometimes patting them a little or at least looking at them.  But around that same time, she started to fear dogs.  It's not the same as many of her other reactions when she sees a dog.  It's basically a freeze reaction.  She stops, becomes silent, and simply won't move another step closer to where the dog is.  That's what happened yesterday.  There were lots and lots of dogs at the market, on leases and well behaved, but Janey just wouldn't walk in a direction where she saw one.  For a little while, we got caught in the middle of a bunch of them, and we couldn't go anywhere.  Janey didn't cry, she didn't say anything, she just became like a statue.  When I tried to hold her hand and keep her moving, she just stood her ground.  I would have had to drag her, or pick her up, which now that she is 60 pounds, I really can't do.  So we just stood there until some of the dogs moved on.

I really don't know what to do about this dog phobia.  I try reassuring Janey, I try reading her books with dogs, I try to talk to her about them.  I don't really have any close by friends with dogs I can have her get used to.  My sister has dogs, but she's moved far away now.  For now, it's not really restricting her life much, but it makes us not able to go to parks much, and as she gets older, she might outgrow back yard playing and want to do more outside things.

Maybe the dog awareness is a good sign.  Janey is noticing what's around her more, and scanning for dogs all the time, which is more than she used to do.  And dogs are not like cats.  They can come on strong.  They are sociable.  Cats don't tend to care if you pay them any attention or not, but dogs want you to interact with them.  That might be why dogs can be good therapy for autism.  When Janey first regressed, I read a lot about therapy dogs, which I found out were for kids over 6 with autism.  For a while, I kind of planned to look into getting one for Janey when she reached that age, but 6 is right when her phobia started.

Does anyone out there have experience with autistic kids and dogs?  I'd love some ideas on how to work on this phobia, or insight into whether it's worth it to work on it at all.

Pictures without sound

Janey is still having a tough time.  Lots of screaming, lots of fury, but tonight anyway, less arm biting.  She had a few good minutes out in her element, in the back yard, and I thought I'd just put on a few pictures of her, to keep my own spirits up.  I love her so much.  I wish she was happier.

A Good Stretch

Janey is continuing her good stretch.  There were the two very tough weeks, vacation week and the week after, but by the end of the week after, things were starting to improve, and this week has been a great one---Janey happy, few meltdowns, good potty use, better sleep, and of course the tea party I wrote about.  She's done a few other very sweet things, especially a few nights ago when she was "reading" a book about a bunny aloud---using a voice that was obviously like a teacher voice reading to a class.  She said a set phrase (something like "Look!  The bunny has big ears!") for each page, but she said it in the sweetest way.  That was great.

What makes a stretch good like this?  And what makes a stretch bad?  If I knew that, I'd do whatever I could to use the knowledge to make all the stretches good.  There's a few things I can guess at.  One is routine---vacations are bad, bad news, usually.  Janey can handle weekends, and has a sense I think of what two days are, and knows when it should be Monday, as she doesn't like long weekends, but she can't handle vacations.  I'm so glad she has summer school---before that, the summers were very tough.  Another factor, I'm coming to see, is weather.  Good weather and time outside are vital for Janey.  She needs that---the time to feel the fresh air, to have room to move.  And a third is how the rest of us are doing.  Janey picks up hugely on our emotions.  Vacation week was extra bad this time around because we all were upset over the bombing and all the aftereffects.  If we are tense, although Janey doesn't understand what we are tense about, she picks up on our mood.  She is extremely sensitive to tones of voice especially.  She can understand them, if not the words.

Another things we've been doing is leaving an iPod on the base that has speakers at all times, so Janey can go over there and play songs from her playlist when she feels like it.  This often calms her right down---she goes through the songs until she finds the one she needs to hear, and listens to it intently.  Anything like that that we can do to give her some control over what she sees and hears seems to be very important.  Now, no matter what she asks for on TV, I usually set it to Netflix streaming and hand her the remote, so she can pick what she wants.  I think one of the big steps forward in the past 6 months or so is her learning to use technology like that a bit better.  When it's hard for you to talk, being able to pick what you want in such a way must feel wonderful.

Even if we go with all the things that usually make Janey happy, I know there will be more tough, crying times.  Life as Janey is probably a very frustrating thing to live, often.  She is growing up and I think, I guess, becoming more aware of what she can't do, maybe not consciously, but at some level.  I can picture her wanting things she has no way on earth of explaining, and that would make me cry too.  It's why I need to try so hard to figure her out, and why I need to do all I can to give her ways to control her life.

These Happy Golden Moments

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

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

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

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

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!

Really, Parade Magazine, Really?

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

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

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

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

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

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

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

My fantasy wish list

Janey seems to be over whatever was happening this weekend, the horrendous crying spell.  We are recovering---Tony and I, and the boys, and most of all Janey.  But it's left me thinking about our lives a lot, and especially---what would help?  What would make it easier to be Janey, and to parent Janey, and to be a sibling to Janey?  I had some ideas.  These are not ideas anyone can make come true.  They are more like fantasy ideas, but I wish they weren't.

The biggest idea, the biggest truly helpful thing---a drop-in center for respite.  That is what I daydream about.  I've written about it in the past (here).  I dream of a center staffed with trained autism professionals, along with paraprofessionals and volunteers (many high schools now require volunteer hours, and this would be a great job for people interested in a career in special needs).  You could pre-register there, and get assigned a certain number of hours, and be able to bring your child in with very minimal notice.  This would in so many ways be more helpful than in home respite care.  That's because what we crave most is a chance to just relax at home, maybe watch TV or a movie or cook or talk with the boys or even have a few minutes of adult time.  We don't want to clean the house and pay for dinner out, which having in home respite would require.  In fact, we do have in home respite---the boys.  If they are available and we have money to pay them, they can always watch Janey, but it's too expensive for us to go out often, and it's not what we need.  We need some time as a family to regroup from the incredibly tough job of parenting Janey.  And she would benefit greatly from a change of scenery at times too.  I picture a place with a sensory room, a fenced safe outdoor play area, autism friendly toys---not a place for learning or drilling or school, just a recreation place that the kids with autism would love and their parents would love even more.

Another thing that would be helpful---a time machine.  I wish for this because I feel like right now, we are in the infancy of understanding autism.  The epidemic, if there is one, has just started in the past 10 years or so. We are at the stage I imagine is like the early stages of any new illness on the scene.  People are desperate, people all have theories, and everyone is well meaning, but no-one completely knows the best practices to follow.  No matter what you do, there is something else you aren't doing, and you always wonder if that other thing is what you SHOULD be doing.  I wish I could go forward 50 years, just for a day or so, and see what has been learned about autism.  What treatments have stood the test of time?  Then I could come back and go forward confidently with what I've learned. Or maybe I'll learn nothing has shown to help.  Then I could just relax and concentrate on giving Janey the best life I can with what we already have.

The next wish is one that is similar to almost anyone's wishes---unlimited money!  I wish I had enough money for a new house, one with a room that could be made into Janey's own sensory room, one with a big backyard, totally fenced, so Janey could run around all she wanted, one with an indoor pool (I'm dreaming big here!).  I wish I could take those great catalogs full of autism friend supplies that are hugely overpriced, and just order anything that caught my eye.  I wish I had money to fly all the mothers I've met here for a long weekend in a luxury hotel, where we could laugh and eat fancy food and drink fancy drinks and regroup and relax.  I wish I would not have to worry about every cent, or our lousy health plan.  I wish I could buy Janey anything that might help her without ever thinking twice.

My last fantasy wish---mind reading.  I wish more than anything I could go inside Janey's mind, and see what it was like.  I wish I could know what she is feeling when she cries all day, or when she manically repeats lines from videos, or when she obsesses over certain foods, or when she loves a piece of music, or hates it.  I wish I knew how her perception of the world is different than mine, and how I could modify her surrounds to work with that.  I wish I knew how much she understands of what she hears.  I wish I could be her, just for a little while, so I could be a better mother to her.

There are so many things I don't have to wish for, because I already have them---a great school for Janey, a wonderful husband and siblings for her, her good health---all of that.  I know I am lucky in so many ways.  But for Janey, I still have so much I wish for.