As 2016 ends...

2016.  A lot of people seem eager for this year to end, but for us, and for Janey, it was overall a good year.  It held far less ups and downs and dramas than the last few years---no burst appendix, no psychiatric hospitals, far less days of crisis.  It feels mostly like the legendary prophesy I've always heard, that life with a child like Janey gets easier in time, has come to pass.

What caused this?  Much of it is just Janey growing up, and in a way, us growing up too.  After the years of crisis, we made a decision, unconsciously, to change instead of asking Janey to change.  It's not like we woke up one morning and suddenly became radically into total acceptance, but we somehow realized that everyone is happier if we let Janey be Janey, if we embrace the things she loves and minimize the things she doesn't.

There are other factors too.  She is in a stable school situation.  I think the change of schools when she was in third grade had a huge destablizing effect for a couple years.  It was probably a necessary change, but I am not sure if I had it to do over knowing how much it would throw her off, I would have agreed to it.  But now she's been in her new school for years, and it feels familiar and comfortable to her.  The medication she is taking seems to be helping, too.  Her brothers are away at college, and although we all miss them hugely and love it when they are home, she is essentially an only child when they aren't, and she loves the undivided attention. 

I'd be amiss if I didn't give credit to music, too.  Music is such a huge part of Janey's life.  She knows what she likes, and she is an extremely interactive listener.  When she hears a song she loves, you would have to be devoid of any sensory input to not know how much she loves it.  She rocks and rolls and screams in delight and asks to hear it over and over and simply shows joy that I wish every performer of the songs she loves could hear---it would be a tribute they wouldn't forget.  Her tastes are eclectic.  She loves Christmas hymns and Twisted Sister and the Beatles and banjo music and the occasional Chipmunks and too many others to mention.  There's much she doesn't like too, and she lets us know in no uncertain terms---when a song comes up that she hates, she said "I want MUSIC!", letting us know that whatever horror we are playing doesn't deserve to be called music.

I need to be honest, though, and say at times, I feel a lot of sadness over the equilibrium we have reached.  I wish I didn't, but I do.  Janey talked less in 2016 than she did in probably any year since she first regressed at 3.  That was hard to take.  Her speech has slowed down.  She uses familiar phrases and simple requests, mostly.  The other day, I was remembering a time when she was two, when we were in a waiting room and there was an old lady there, and Janey said "I don't like she!"  The lady heard and it was of course hugely embarrassing, but the thought of her expressing an opinion that directly and easily---I suddenly started to cry very hard, thinking how she can in no way do that now.  I was driving and had to pull over.  I accept Janey's speech, I am glad she talks as much as she did, but still, I must admit, I feel a huge amount of sadness and anger over whatever took her speech away.

At points this summer, I thought we might actually have the whole toilet training thing down.  But we don't.  That area has regressed badly.  Sometimes I am ready to simply admit Janey might never be trained fully.  It would be a relief to admit that.  She manages at school in underwear, but lately she comes home and immediately soaks herself, and I wonder if she is working very hard to hold in urine at school all day.  At home, although we take her to the bathroom endlessly, she very often, very very often, has "accidents", and I am starting to feel that even just thinking of them as accidents instead of just her doing the best she can do is doing her a discredit.

With all this being said, what I most wish I could portray with words is how much joy Janey brings us, what a wonderful person she is.  When she is happy, she is the happiest person you can imagine.  She makes everyday little things feel like the world's biggest treats---shopping for salami, hearing a great song, snuggling, sneaking a drink of coffee, giggling over nothing.  There are times Tony and I look at each other and smile, and we are both thinking that few typical 12 year old girls would love their parents as unabashedly and exuberantly as Janey does.  As I was writing this, Janey made her most common request---"Snuggle on Mama's bed?" (the bed is hers, not Mama's, but the phrase doesn't reflect that!)  As I snuggled her, I asked her if I could take her picture.  Here's that picture--messy hair and all---which might give you a little idea of the joy that girl's face can show.  

Happy New Year to all, and may 2017 bring you all joy.  

Thoughts during the calm

Calm Janey

My friend Julie said to me recently that it seemed like life with Janey was evening out as time went by.  That struck me as a very good way to put it.  The last year with Janey has mostly been a year of evening out.  Her lows are higher, her highs lower, and she spends more time in the middle.  There's still tough days, and still amazing days, but most days are..days.  Which is good.  Which is very good, actually, compared to some of the hard times. Whatever it is---her getting older, her now being essentially an only child as her brothers are both away at college, the right combination of medication, a stable school situations, our changes in attitude and strategies---life with Janey is much smoother than it was a few years ago.

That's why it seems strange to me that more than I have in years, I have been thinking about tough questions.  Why is Janey autistic?  Why, unlike so many kids with autism, has she made so little progress with speech and academics?  Why is it so hard to get help with her?  I guess when we are not in crisis mode, but also not being blinded by exciting new things Janey is doing, there is time to sit back and think, and sometimes the thinking is hard.

I never used to dwell much on why Janey is autistic. A lot of that is because there is no shortage of potential reasons.  Pretty much every time a new idea comes out as to what causes autism, it is something that applies to Janey.  I had a terrible pregnancy with her, with a severe allergic drug reaction at 12 weeks.  Tony was, at age 42 at the time of her conception, an older father.  Genetics can't be ruled out, and auto-immune disease run rampart through both sides of the family.  We live near a busy street, and pollution certainly could be a factor.  I could go on and on.  But still, I wonder. Was there something I could have done differently?

As for why Janey has progressed so little, that's harder to say.  And more heartbreaking.  So, so many little kids that start out at the same place as Janey make so much progress.  They have the same resources and teaching Janey did, and now they can talk easily, can read, can write, can function at a hugely higher level than her.  I love Janey just the way she is, but for her, I wish she had made the leaps some kids do.  The evening out applies to her progress, too.  She talks less than she has at times, her toilet training has regressed to less than it was, she is in some ways more affected by autism than she was at 6 or 7.  I don't know why.  The same question comes up here---was there something I could have done differently?

And why, WHY, is it so hard to get help with Janey?   Why does it seem that those charged with helping children with special needs don't understand children like Janey, children whose needs are fairly extreme, and because of that, children in families that need help so badly?  As an example, over and over this holiday season I've heard about ToysRUs and Target and so on having special "quiet" shopping hours for kids with autism.  And although it probably sounds petty and mean, I think "Bah Humbug"  That is an example of the kind of help that is no help at all to someone like Janey.  She would not be quiet for a quiet shopping time.  She doesn't understand shopping for toys.  She has no desire for toys.  And most of all, taking her shopping is NOT a source of help for us.  It's more stress, not more help. What would be a million times more helpful is if the stores somehow arranged for someone to actually watch kids like Janey so Tony and I could shop.

I know there's money out there to help kids with autism.  I've talked with people working for various agencies.  But the money seems to go into a couple fairly useless areas. It goes into "awareness", or it goes into "family events".  Well, if you have a kid like Janey, you are pretty darn aware of autism.  And if you have a kid like Janey, just getting out of the house with her is tough enough.  It is really not any help to have some kind of event to go to with her unless it is catered to kids LIKE her, kids with high need autism.  And even if it is, that's not respite.  That's not a break.  It might be fun, like going to the Lego playland or the Autism Eats Out events, but it's not really help.  Quite simply, help is RESPITE.  Help is someone else taking care for Janey for a while.  It's that simple.  It's that simple to state, but it's very, very hard to find.

Having the time and energy to think about the larger autism issues is a luxury. I am very grateful things are calmer than they were with Janey, and I knock on wood to hope they stay calm.  Progress or no, respite or not, reasons  known or not, she is a remarkable, wonderful girl---my sweet precious Janey.  I am lucky to be her mother.

Daytime Bedwetting, Crying, Guessing...

Toilet training.  I'd say I'm an expert on the subject, having been training Janey for about 10 years now, but that's a case where the longer you've worked at it, the less of an expert you probably are.  

My dear friend Michelle and I talk on the phone quite a bit.  Her amazing daughter Lindsey is five years older than Janey, and I can't even start to tell you how wonderful it is to have someone to talk to that has blazed the trail we are taking with Janey.  She said something last week that struck me hard---that she will never say that she is done with the whole "training" process.  

I used to think that there would be an endpoint with the whole potty-training deal.  There was with the boys, and there is with most kids, but with Janey, and I would guess with others like her, there just isn't.  It's not something I talk about a huge amount, as it's not one of the more picturesque parts of autism. But it's a big part of it.  

Right now, at age 12, Janey almost always uses the toilet for bowel needs.  That is wonderful.  I won't get into what everyone with a child like Janey probably is already too familiar with, but let's just say that the times Janey came to me covered with what was not chocolate, and further investigation showed that this same issue had affected huge areas of the house....well, you know how wonderful it is that she is trained in that way.

For urine, Janey uses the toilet in some circumstances.  She wears underwear to school every day, and rarely has an accident there.  Out of the house in general, she does very well.  On our weeklong trip to Ohio, when she was in the car for long hours, there was barely an accident.  Part of this was her enjoyment at telling us she needed the bathroom, because it caused us to stop and get to see some lovely highway rest areas and fast food joints, but hey, whatever it takes.  At home, though, it's much more of a chancy thing.  I'd say she uses the potty about 50 percent of the time for urine at home.  it's the other 50 perfect that is very, very tough.

For whatever reason, Janey wets the bed most of the time she doesn't use the toilet at home.  I'm not talking during sleep here.  We put her in two pullups at night, and we probably always will.  I'm talking when she's awake.  She will go over to the bed and wet it, in the daytime.  As you can well imagine, we are not huge fans of this.  We have tried everything we can think of to discourage this behavior.  We take her to the bathroom on a very regular basis, and try to get her to go.  We do everything we can to keep her off her bed when she might need to go.  We talk to her about it, tell her social stories, beg her, and yes, at times, we have given into to despair and yelled at her about it.  This is usually when we've just taken her to the bathroom, begged her to go, and she hasn't, and then she goes directly to her bed and before we can stop her, wets it.

This week, both Tony and I gave in and got upset with Janey for the daytime bedwetting.  We are bone tired of changing sheets, washing blankets, spraying odor control things, trying desperately to keep her bed a place you'd want to sleep.  I don't like speaking to Janey sharply, but I have to say, I'd challenge a saint to not sometimes get a little annoyed after literally years of this.

Coincidence or not, Janey has been doing a fair amount of crying this week.  She cried a lot after school last night, and she woke up crying this morning.  Nothing was helping, until I said "are you upset about the bed, about peeing on the bed?"  Janey echoed "WERE YOU UPSET ABOUT THE BED!" And I had a flash of thought, thinking "this isn't worth it.  Would I rather keep dealing with the bedwetting, or would I rather have Janey tense, upset, crying, over something that for whatever reason she seems unable or unwilling to stop doing?"  The answer was clear.  I'd rather deal with the wet bed for a million years than have Janey hysterically upset, biting her arm, crying.  I don't know why she does what she does with the bed.  But I know that I can control how I react to it.  I can keep doing the positive things---taking her to the bathroom a lot, praising her for using the toilet, encouraging her.  But if she does do the daytime bedwetting, I can deal with it in a matter of fact way.  I can keep myself from getting angry.  I can just accept that for now, that is how things are.

I told Janey "I'm sorry I got upset about you peeing on the bed.  I like you to pee in the potty, but if you forget and pee on the bed, we'll clean it up.  You don't need to cry about it.  It's okay"  Janey gave me one of the looks I live for, the look of understanding and connection, the look that says I've hit on something.  And she smiled, for the first time of the day.

I wondered, after Janey went to school, if I was doing the right thing.  Then I stopped myself from the worrying.  I reminded myself, as I've learned to do, that there is no right way with Janey.  There's no book that tells how to parent her.  I'm writing her book.  I don't know how the chapter on toilet training will end.  It might never end.  But it's not the most important chapter of the book, and keeping that in mind, we'll do the best we can, both Janey and us.

Yes, no, the water---talking and not talking

One of the oddities of Janey's speech is that there rarely seems to be a time when she is using both "yes" and "no".  She'll use only "yes" for a long time, then only "no", then swing back---the idea of having both as an option seems to elude her, or seemed to.  Lately, we are hearing both, and it's wonderful.  "Yes" is still far more common than "no", but there are "no"s now and then.  Janey's teacher told me about one, realizing they are fairly rare.  He asked her to carry a communication sheet to breakfast with her, and she said no.  He was surprised and pleased, and respected the no.

It's interesting to me that what she refused was a communication aide.  It reminded me of a time when I talked to Janey about ways besides speaking she could use to communicate.  That led to one of the most striking and surprising moments ever with her.  I wrote about it here. (link)  Janey told me, clearly and firmly, "I know how to talk".  She said it twice, in a way she very rarely speaks.  That, and many other times she has refused very strongly to use AAC or iPad speech programs or anything of the like, has given me her strong opinion.  I love to know how she feels about issues, and I respect her opinions.  But I do wish I could help her better use her talking to communicate.

Here's an example.  Janey loves to take showers.  Our shower is jury-rigged in such a way that only the cold water works to change the water temperature.  You have to turn the cold water faucet in tiny increments to get the water hotter or colder.  We have it set on the hot water heater so it's never dangerously hot, but it can get fairly hot.  Janey likes the shower almost, but not quite, as hot as it goes.  She has seen from observing how I adjust the temperature.  Since she will often want a shower that's half an hour or more, I get out after washing her hair and just supervise.  While she's in there alone, she constantly tries to fix the water to be just the temperature she wants, and she constantly overfixes it.

When the water gets too hot or too cold, Janey says, every time, "Want to get out?"  And so I hold out a hand to get her out.  And she refuses.  And then I ask "Do you want me to fix the water?" and she repeats that in confirmation---"Do you want me to fix the water!"  And I do.  And then a minute---again.  And again....  The other day, I figured while I was standing around waiting for her to ask for help, I might as well try an experiment in getting her to say what she meant.  I said to her "Janey, you always ask to get out when you mean you want me to fix the water.  When you want the water fixed, can you say 'Mama, fix the water?' or something like that instead?"  Minutes later, of course, "want to get out" And so I played dumb and tried to get her out.  When she didn't get out, I pretended I didn't know what she wanted, and finally, she said "fix the water!"  And for the rest of that shower, she said it.

So---a breakthrough, right?  Wrong.  The next day, we were back to square one, asking to get out.  I reminded her, but this time, she just screamed and screamed.  I finally made her get out.  The next day, she cried before even getting in the shower, and didn't ask for the water to be changed---just stood there in water that had gotten too cold.  In the days since the first try, over the course of about maybe 20 showers, she has once said on her own "fix the water!" Now, when she asks to get out, I just say "You want me to fix the water" and do it.  When she's ready to get out, she gets out without asking.  In her eyes, problem solved.

That's a long example of a problem that comes up over and over.  It's extremely, extremely hard to get Janey to regularly use any new speech.  She KNOWS the words, she CAN say, she UNDERSTANDS them, but she doesn't use them.  She uses a few phrases for almost all purposes. Years and years and years of school speech therapy have not helped to talk more at all.  They have been, I can say pretty strongly, a complete failure in that department.

I don't know what to do about this issue.  I'd be thrilled to communicate with Janey in any way.  If she would use a speech program, or sign language, or typing, or writing, or anything, I'd move heaven and earth to work with her.  But she doesn't want to.  If I could find a kind of speech therapy that worked for her specific speech issues, I'd drive anywhere, pay anything (although our insurance would most likely cover it, IF I could find it) to make use of it.  But I've never had anyone seem to know how to help her use her verbal speech more.

So, for now, we accept what she can say. The shower talk attempt taught me something.  If I know what she means, I will go with that.  It does little good and sometimes much harm to try to force her to speak in a way that more people could understand.  It's more important for me to connect with her than to try to change her way of talking.  Still---there is the bigger world.  There's the thought of her without Tony and me, someday, the black hole, the staring at the sun, the thing we can't think about but which always is there in our minds anyway.  I hope she always finds someone to understand her, and I wish so much I could help her make that possible.

If Janey had her way about holidays...

This morning, Tony left very early to go to New York State to get Freddy and his friend Cheryl and bring them home for Thanksgiving.  This was a change in routine, as I got Janey ready for school and got her on the bus on my own.  Janey never says much in the morning, but today, she said even less.  She went through the stages of getting ready fairly cooperatively, but she kept looking at me with a confused and wary look.  I explained to her as best I could that Daddy was getting Freddy, that he'd be back later, that her brothers were coming home today, that school was going to be shorter than usual (they have a half day), that we'd have a nice big meal tomorrow, that school would start again Monday---all that.  And I thought, as I've had many times, that Janey would prefer there to be no holidays at all.

I don't know that for sure, of course.  But I strongly suspect it.  Holidays, to her, are upsetting changes in the regular routine.  They involve Mama and Daddy doing things they don't usually do, and not being available when she expects us to be.  They mess up the school days and weeks.  They have people trying to get her to do odd things, like blow out little fires on pastry, hang socks up at night, go through many steps to open up something she doesn't want or care about, dress up in odd costumes and go to houses and ring doorbells---a lot of weird stuff.

I think sometimes if Janey was an only child, we'd pretty much have birthdays and Thanksgiving and Christmas be much like any other day.  There are parts she likes, of course.  Christmas music is one of her favorite things on earth, and in fact "Frosty the Snowman" got the only smile out of her this morning I could get.  She enjoys a good cake as much as anyone.  And she'll be glad to see her brothers.  But overall, holidays stress her.  But she isn't an only child, and even if she was, Tony and I are people too.  We'd want some holidays in our lives.

The combination of autism and holidays, or Janey and holidays anyway, bring on two big feelings for me---guilt and sadness.  The guilt comes on, strangely, when I do things to make holidays less stressful for her.  If I don't get her more than a token gift for Christmas, because she hates opening presents and has no interest in 99% of anything material, I feel guilty that she has nothing under the tree.  If I don't take her trick-or-treating, as I didn't this year, I feel guilty that she is missing out on something I loved as a child.  The guilt is foolish, I know, but it's there.

The sadness---that is on me.  It is my sadness.  Janey is not sad that she doesn't fully get and enjoy holidays.  But I am.  Holidays, in a lot of ways, are for parents.  We look forward to seeing our kids pull treats out of the stocking, gather huge piles of candy and sort them, blow out candles as we wipe away tears and think about how fast they are growing up...holidays are the Hallmark moments of parenting.  And I admit---it makes me sad, in a completely selfish way, that Janey would prefer to skip so much of what I want to experience with her.

Thanksgiving is one of the easier holidays.  It involves mostly eating, which Janey certainly does like.  It starts the season of Christmas music, which can never start too soon for her.  She even sometimes likes the parade on TV a bit.  So, we'll try to keep the day as routine as we can for her, while sneaking in bits of the parts she will at least tolerate.

Happy Thanksgiving 2016 to all of you.  I am incredibly lucky to have found this community, and I am thankful for those who read this blog, extremely thankful.

Annual physical and a surprise sentence

Janey had her annual physical yesterday.  She's had a fairly healthy year, so we hadn't seen her pediatrician since last January.

The tough part of the visit was the wait.  We were in the waiting room for about 45 minutes.  That's quite unusual, but I guess they were very busy. In the past, this would have been a recipe for extreme disaster.  As it was, it was hard but not impossible.  Several times, Tony took Janey for a little walk, staying near enough so I could call him right back if we were called.  As the room cleared out, and we kept thinking surely we would be called any second, we stayed in the room and entertained Janey as best we could.  It struck me that although part of what's different than the past is that Janey has matured, part of it is that Tony and I just do what we have to do now, without caring how it looks.  For a long time, we sang and danced with her.  I sang Christmas songs, quietly but not silently, and I didn't care if people stared.  And people did stare---especially kids.  I don't like the stares, but they don't stop me any more.  I know Janey confuses kids sometimes. It's hard for them to figure her out.  I less like the stares of the parents.  I want to say to them "Have you never seen a child with disabilities before?  Is is really that shocking to you?  You know, she's a lot more interesting than your little snobby brats!"  Not nice thoughts, but when you've been trying to hold it all together for as long as that wait seemed, you get nasty sometimes in your mind.

Once we got into a room, it was much easier.  We really like our pediatrician a lot.  I'm glad we made the change about a year ago.  The pediatrician that saw the boys was right for them, but I don't think he ever felt comfortable with Janey.  I am pretty sure he saw her as a tragedy.  That is not the attitude I want in someone treating her.  The new pediatrician seems to delight in her, while still understanding the challenges she presents.  She listens well, and she talks directly to Janey.  She did a good exam, and Janey looks healthy.  At the end of the appointment, Janey got a flu shot, which we were not sure how she'd take, but she took it extremely well---not a single protest or scream.  You never know with her.  Hopefully, she won't get the flu this winter as she did last winter.

After the shot, as we were putting on Janey's coat, she said, plain as day, "Can we go home now?"  Tony and I looked at each other in amazement.  That might not seem like a remarkable sentence, but it's the type that is extremely rare with Janey.  Her speech is rarely that direct.  The usual thing she'd say in that situation would be "Want to take the big girl for a car ride?"  or "Listen to music in the car?" or "Do you want salami?" or something else that means basically the same thing, but doesn't come out and say it.  A sentence like the one we heard, direct and grammatical and appropriate and succinct, is very, very unusual for her.  It was wonderful to hear.

As the years go by, we measure success with Janey on a scale that isn't the same as most parents might use.  It's her own scale.  We headed home feeling that we are indeed making progress.  And by we, I do include Tony and me.  We are making progress in being Janey's parents.  And she is making progress in being herself.  And that is a good feeling, something to be thankful for.

Day after the election thoughts

Okay, the presidential election didn't go the way I would have preferred.  However, I am finding this morning I can't muster up too much emotion.  That's because I don't think anyone in a position of power has any idea what life is like for people like Janey, and the families that love people like Janey.

Why is this?  Quite simply, because we can't run for office.  We CAN, legally, but who would have the time?  When would someone raising a child with significant special needs ever have the time to launch a campaign?  Who would watch our kids while we were out there pounding the pavement?  Who would be changing the pull-ups, fixing the meals they will eat, taking care of our pre-teens and teens and adults that need the same level of care as a toddler?  And I hope I'll be forgiven for saying that Janey will never be able to run for office herself. That is not at all to say there are those with autism that might be able to run a political campaign, but those are not the people with the kind of needs I'm talking about here.

The problem is we don't need rhetoric.  We don't need philosophies.  We need help.  We need respite.  We need housing.  We need education.  We need recreational opportunities.  We need health care.  We need adult day programs.  We need equipment.  We don't need "awareness".  We need HELP.

I wish anyone running for high office would spend a day with Janey, a day in her world and ours, or a day with any of the wonderful families I've met on this journey.  I wish they could see how hard underfunded public schools work to educate her.  I wish they could see what it's like to care for her day after day, week after week, month after month, year after year, without any respite besides the school.  I wish they could understand what it's like to be up all night with a child who is crying and can't tell you why.  I wish they had spent time as a "boarder" in a hospital waiting for a seat at a psychiatric ward for their child.  I wish they knew what it was like to wake in the night, terrified, thinking about my health, not for myself but because I don't want Janey ever to be without parents.  

I'm a one issue voter.  I would love to have the luxury to think of it all in a theoretical way, to debate the philosophy of it all.  But I don't.  Tell me you are going to put money into direct services for the disabled, and you have my vote.  People on high seem not to understand why many just don't vote, but I get that, more than I ever would have before Janey.  Why vote, I wonder sometimes?  It doesn't seem to matter who gets elected.  I was furious that Trump mocked the disabled, but then again, Obama mocked Special Olympics.  I might have preferred that Hillary won, but if she had, I very much doubt my life would have changed much over the next four years.

The truly voiceless are people like Janey.  I see a lot of people on Facebook talking about how they are going to explain this election to their children.  Janey didn't know there was an election. She doesn't know what an election is.  No-one is courting her vote, or future vote.  She doesn't know who Trump is, or Hillary, or Obama.  But more than almost anyone, she's at the mercy of those in power.  I'm not a prayer, usually, but God help her.

Five years ago, but it could be today

Just now, I read the blog post I'd written about Janey five years ago, The Patience of Job.  It wasn't an especially mind-blowing post, or one about anything major.  It was about how much patience it took to get through one morning with Janey, one where she woke up at 1 am and I had to get through until school started, which at the school she went to then was about nine

Janey five years ago

.  I was curious how other years had been around this week of the year, as this was the week that two years ago Janey wound up at the psychiatric hospital.

What struck me most about what I read was how very similar to today it seems.  Janey's speech, her interest, her behaviors...so little has changed.  She still asks for the same things, with minor variation.  She asked for baths then, now it's showers, she was more into Kipper and Barney then, which she still does watch, but more often Scooby Doo or Courage the Cowardly Dog.  She still constantly asks to snuggle on the bed.  She no longer asks for bottles (babas), which even then really meant just milk in a glass, but she still asks for cheese and cabbage a lot.  Her sleep is better than then, but there are still sleepless nights now and again.

Janey's lack of progress in many areas is one of the things that has been getting to me lately.  Speech is the biggest area in which she, if anything, has regressed a little.  She talks pretty much exactly like she did five years ago.  What has been hitting me all the time lately is that she speaks far, far less than she did ten years ago, when she was two.

Over the years, I haven't thought about Janey's big regression that much.  Mostly, that is because I can't bear to.  I have consciously put it out of my mind.  I don't know why it's sneaking back into my mind lately.  But until about Janey's third birthday, she talked a lot.  Her speech had some oddities, but it was good, even very good, for a two year old.  She was followed closely by Early Intervention, and she never had speech therapy---I even remember them joking about how little needed it would be.  It bothers me some how little I can even remember of that fluent speech.  It would jar my memory to watch the few videos we made of her, but I can't do that.  I have tried, maybe twice, and simply fallen apart and turned them off.  But I know she spoke well, well enough to tattle on Freddy for showing her a scary Sesame Street parody "on the internet", well enough to talk non-stop one day about how much she wanted to go to the playground, as I remember timing it sitting here by the computer and noting she had talked for five minutes non-stop.  Enough to tell a friend's daughter that they would be "best friends forever"  And I have to stop remembering now, because I'm crying.

Most of the time, I don't get caught up in "why".  It's useless.  But something has hit me lately that I am thinking "why" a lot.  Why hasn't Janey progressed, when so many kids with autism do?  Why did she regress in the first place?  What happened?  WHY?

I'm not going to talk politics here, although of course tomorrow is Election Day.  It's been a depressing election season, and that hasn't helped my gloomy feelings.  But whoever wins, at whatever political level, I wish they could meet Janey.   It is ironic that people like her are the least able to speak out about what they need and want from government, but are perhaps the most affected by the whims of government.  I am terrified of my own aging, because I am terrified of a world where Janey doesn't have parents to protect her.  I'll close with a picture I took of Mayor Thomas Menino's gravestone.  He was a politician of the best kind, and the quote on the stone is something I wish all politicians took to heart.

Thank you, Janey, for being such a cool kid

Last night, Janey, Daddy and I had the probably ill-conceived idea of ordering Thai take-out from a town four towns over, on a rainy and traffic-filled evening.  You were up for it, because you are always up for a ride in the car.  You were excited just to be going someplace with your parents.  That's not something every twelve year old girl would be, my sweetie.

I did your hair while Daddy ordered.  I put it in strange Pippi Longstocking braids, because it's so thick and curly that braids stand out to the side.  Then I clipped them together on top.  It looked very elegant on you, Janey, but then again, you always look beautiful.  I told you how lovely you looked, and you admired yourself in the mirror.  You aren't going through that stage a lot of girls do, where you put yourself down.  You know you are beautiful.  I love that about you.

In the car, we got caught in traffic.  But you didn't care, because we were listening to music.  I was using my Slacker Radio app to find many, many versions of "King of the Road", a song you love and I love and my parents loved growing up and in fact a lot of people growing up liked, because it mentions Bangor, Maine, and not many songs growing up ever seemed to know Maine existed.  You don't love it for that.  You love it for the beat, the rhythm, the pacing, whatever it is that makes you able to pick out great songs and enjoy them.  When the versions I played strayed too far from the original, you said "Music, please, music!" letting me know that I wasn't playing Music with a capital M.  You know what you like, and you have great taste.  You mostly like the Roger Miller version and the Randy Travis one, and those are the best, I agree.

On the way back, we played another song you love---"If I Were a Rich Man" from Fiddler on the Roof.  There, I found a version by a woman with a Cyrillic name, a jazzy version without words, instead just repeating the "dabba dabba dabba do" type scat to the tune all the way through.  It's something I would have never listened to, but you loved it and asked for it over and over.  By the third time, I liked it pretty well too, and so did Daddy.  You aren't influenced by anyone else.  You like what you like, and that is great.  We all moved to the beat in the car, driving in the dark and rain, our own little world.

At home, you tried all the Thai food, because you always try everything.  You are an adventurous eater, far more than I am.  We watched "Family Feud" on the old game show channel, and you didn't object or cry for your own shows.  I think you're even getting to like Richard Dawson.  Without us really noticing, you are gradually allowing Daddy and me to do the things we enjoy more and more.  You are growing up.

When you were tired, you said "Snuggle on Mama's bed?" which is what you say every night.  Mama's bed is actually your bed, but we know what you mean.  I lay down with you as you played a little iPad and then fell asleep.  It was your usual bedtime, around seven.  You sleep when you are tired, and you are usually a good sleeper.  Daddy and I stayed awake about another hour, and then we went to sleep too. You're a morning person, like your father and William.

Janey, I know it's very unlikely you'll read this.  You can't read, and if I read it to you, I don't know if you'd understand most of it or not.  And that doesn't matter.  That doesn't make you less interesting, or beautiful, or opinionated, or cool.  I won't pretend it is always easy helping you live the best life you can.  It is hard, a lot of times.  I won't lie and say I don't wish sometimes life would be easier for you, or for us.  But you are one incredible kid.  I love you, Janey.

Arm Biting

One of Janey's most consistent challenging behaviors is her biting of her own arm.  It's always her right upper arm.  She raises it to her month and bites the same spot.  It happens any time she is upset, and many times when she's not really upset, but overexcited or wound up in other ways.  The bite varies a lot in strength.  It can range from almost more like sign language with no real biting at all to actually biting down very hard on her skin.  She almost never breaks the skin, but she bites hard enough so she has a permanent hard area of callus where the teeth hit her arm.

The biting started quite suddenly when Janey was around eight.  One Friday, she came home from school with a bruised area on her upper right arm.  We had no idea what it was from until she got upset that weekend and started biting herself right where the bruise was.  From that point on, it's happened at least once a week, sometimes once a day, or hour, or in the worst times, a minute.

I think the biting is sometimes a release, a way to let off tension, and it's sometimes a way to communicate anger or annoyance at us.  When it's mild, I can see just ignoring it or using it as a starting point for discussion---"You are biting your arm.  Do you feel angry?"  However, when it's more severe, it truly hurts her.  This past weekend, when she was crying, I asked her if something hurt, and she said "Does your arm hurt?"  When I asked her to point at the hurty place, she pointed right at the biting area.  It made me feel a huge wave of sadness, thinking about her causing herself pain.

I have very few ideas for stopping the biting.  We've tried a lot of things---an ace bandage over that part of her arm, calling her attention to the biting and asking her to stop each time we see it, behavior plans here and at school, any number of millions of different bite toys, chewable jewelry, fidget toys, even bite-able toys meant for dogs.  Nothing stops the biting.  It seems like part of the whole routine for her is feeling the teeth on her skin.

Why does Janey bite her arm?  I have some theories.  One is that she learned she couldn't bite other people.  It's sad to think she then turned to herself.  If she feels angry enough to bite, and she knows biting other people will cause a big huge scene she wants to avoid, she bites herself.  In thinking about that, I've tried a few times making a big scene when she bites herself, but that hasn't seem to work at all.  Another theory is that the biting has become a habit, like nail biting or hair twirling or something.  But it doesn't happen when she's just bored or doing nothing else.  I've never seen her bite when she wasn't at least a little upset.

Searching the good old internet for ideas about biting is as often not that useful.  It so often seems everyone giving advice goes to their own corner and gives advice based on their own theories.  And often, the "expert" advice seems to assume that the parents have never tried a thing.  Ignoring her?  Figuring out the cause of the biting?  Giving her something else to bite?  Gee---neither her school or us have ever thought of anything like THAT!  It's very frustrating.

A problem with the biting beyond it hurting Janey is that it seems like self-injurious behavior is where a lot of programs draw the line at working with kids.  It's one of the most common questions I've seen on screening-out type applications.  And I can understand that.  It's a scary, awful thing to see at its worse, and I am sure sometimes there's also a worry that we as parents will think that Janey was somehow hurt by someone other than herself.  But it leads to more isolation.

Like with so many other areas of autism, we just keep doing what we can do about the arm biting.  We cobble together various ideas.  We try to keep her happy, which is the best way to keep her from biting.  We talk to her about it, and hope she understands some of what we are saying.  We work hard to calm her when she's upset or overexcited.  And we offer our ears, ideas and thoughts to anyone else dealing with seeing a child they so love hurt themselves.

Trying to radically accept myself

Although I fall far short, my favorite philosophy in parenting Janey is radical acceptance.  I want to accept her as who she is, not try to change her.  I want to delight in her special qualities, without the special being a "special" as seen in "special needs".  I want to be frustrated with her as who she is, not who society feels she should be.  I want her to be herself.  I read a good blog post about this today (read it here) and it got me thinking a lot.  I want to radically accept Janey, but lately, I'm having a very hard time radically accepting myself.

Last summer, I spent a day being researched upon by the Framingham Heart Study.  If you don't know about them, it's worth following the link to find out more.  My mother's family is from Framingham, and I feel lucky to be part of the 3rd generation of my family to participate in the landmark study.  It's mostly about the heart, as the title would imply, but this time, they also included a liver scan, something called a FibroScan.  Usually you don't hear about your medical results from the study, except for a sheet of basic information like your cholesterol reads, but if something fairly major is detected, they let you know.  About two months after my day there, I got a letter saying that the liver scan showed a high possibility of significant scarring to my liver.

That letter sent a chain of appointments and tests into action, the most recent one being a liver biopsy, the gold standard of liver tests.  It gave me a diagnosis---something called NASH (non-alcoholic steatohepatitis).  Basically, that means my liver is inflamed and scarred by means of something other than alcohol.   It's a strange disorder.  No-one knows exactly why you get it, and there is no treatment.  It's just---there.  Sometimes it doesn't progress further (although it in itself is a progressed stage of something called fatty liver) and sometimes it does, leading to cirrhosis, which also has no cure, except a liver transplant.

There aren't too many symptoms of NASH, but the top of the list of the ones they are is fatigue. Just by luck's draw, I have two other medical issues which also cause severe fatigue---a thyroid which works almost not at all, along with what is most likely Sjogren's Syndrome.   The result is a kind of tiredness that is hard to even explain.  I wake up fine, and I'm fine for about three to four hours.  And then I get tired---so tired that I almost always have to take a nap.  I'm okay for a few more hours after that, but then again, very very tired, tired in what I think of a bone-tired way, tired right down to the roots of me.

As I lay in bed a bit ago, worn out from a trip to the grocery store and some minor laundry, I was cursing myself.  I hate the tiredness.  It makes me feel like a lazy loser.  I get so little done.  I do what for most people would be a normal morning's chores on a light day, and I'm ready to collapse.  As I lay there, reading the blog entry I linked to earlier, though, for just a second I thought "I have a reason for this tiredness.  I don't have to hate myself for it.  I can do what I want to do for Janey.  I can radically accept myself"

It's hard for me to accept myself at all, to say nothing of radically accepting myself, but I think I'm going to need to start trying.  That's partly because I can't seem to think my way out of the physical issues I have, and partly because to be the best mother I can to Janey (and to William and Freddy), I need to.  If I didn't rest during the day while Janey was at school, I couldn't do much for her when she got home.  My health issues are part of me.  They are part of what I need to accept.

I debated whether to write about all of this here.  But I write about Janey, and I want to be similarly open about myself.  It seems fair, if I write honestly about raising Janey, that I write honestly about my own life.

I'll close with a picture of Tony and me, taken in front of the building where we met at work many years ago.  I don't like how I look in pictures, but I'm going to try to start radically accepting myself there too.  It's a work in progress.

The season titles and other communication breakdowns

I'm lucky that in many ways, I'm able to communicate with Janey.  Her understanding of what we say is far better than her speech.  I can tell her something like "go in your room and get a shirt, then get your shoes, and we'll put them on to go for a walk" and she will understand and, if motivated, do what I've asked.  She can ask us for food she wants, for rides, for the bathroom.  She uses gestures to tell us things like "get out of this room so I can watch my show!" or "move your legs so they are in a position that's acceptable to my OCD!"  But sometimes, some concepts and ideas just don't seem possible to explain to her.

A big one that has been a problem for years now happens when Janey wants to watch a video on Amazon Prime TV.  The way their interface is set up, if they have multiple seasons of a TV show, there's a season title block at the start of each season.  This block is the same size as the TV show blocks, and you can highlight it like you do a show.  However, clicking on it doesn't do anything.  It's just something saying "The following episodes are from season two" or whatever.  

Janey is bound and determined to watch the non-existent shows that she thinks are associated with the season titles.  She'll gesture wildly to show me she wants to watch "Season Two".  I've been working hard on teaching her to use the remote to get the shows she wants, and although she's not very into it, she'll try in this case, moving the cursor to the season title and clicking the "A" button.  Of course, nothing happens.  And she starts screaming.

I have explained every way that I can possibly think of to tell her that these aren't show, that they will never be clickable, that they just tell what season we are in.  Frankly, I don't think she'll ever get it.  She doesn't know TV shows come in seasons.  She doesn't get why some blocks would lead to a show and others wouldn't.  She simply thinks for some reason of our own, we aren't letting her watch those shows, and she wants to see them.

This might seem like a little thing, but it's an example of one of the very hardest parts of raising a child like Janey, for her and for us.  We can "assume understanding" as much as we want, we can explain with words and pictures and social stories and charts and examples and all kinds of things, but if it's a concept that is simply beyond her, it doesn't matter.  It's like if understanding string theory somehow came up in daily life for me.  I've tried very hard to read about it, I've watched shows about it and thought about it, but I don't get it and I never will, I daresay.  Thankfully, I don't need to, for regular daily life, but the things Janey doesn't understand do come up all the time.  She asks for chocolate milk when there's none in the house.  She wants to go for a car ride at 3 in the morning or during a snowstorm.  She wants to watch "Hercules" when it's no longer available for streaming or even to buy on Amazon.  She wants to wear her Crocs in the winter.  She wants to not get her hair brushed.  And with all the issues like that, I've done absolutely everything I can to help her understand why she can't, but I truly don't think she is able, cognitively, to grasp the concepts needed.

It's not really autism that is the problem here.  It's Janey's intellectual disability.  Not all kids with autism have an intellectual disability, and sometimes, it seems like it's fashionable to think none do, that it's simply we as parents or teachers or caregivers aren't understanding how to communicate.  I'm sure that's sometimes the case, and maybe often, but sometimes, it isn't.  I feel strongly that to respect Janey is to be realistic. It is not respectful of who she is to deny parts of her disability.  Being intellectually disabled in no way makes her less.  I won't get political, but anyone who uses the old term "retarded" as an insult is not someone I want to deal with, ever.  It's not an insult.  It's not something unspeakable that we have to pretend isn't the case.  It's reality, just like it's reality that there are things I don't have the capacity to understand or do that other people can do.  It's not respectful of me to deny that, and it's not respectful of those who might try to teach me to say they just aren't teaching right.  It's reality.  And it's hard, sometimes, but it's the truth.

What I can't stand about the mother in "Speechless"

I've only watched the first two episodes of "Speechless", and I don't plan on watching any more. I'm glad that TV is showing someone like the son on the show, in a wheelchair and without verbal speech.  That's not my issue with the show, although I do wish sometimes they'd show someone with trouble communicating that went beyond verbal speech.  The boy on the show has a lot to say and communicates very well, and of course is also funny and sassy and outgoing and so forth.  And there are kids like him---great kids that I've met, very bright kids and adults in wheelchairs that deserve to be seen as the cool people they are.  My issue with the show is the mother.

If you have a child with a disability, there's pretty much only one personality you can ever have if you are being portrayed on TV or in a movie.  You must be a tireless, relentless, fierce, single-minded, aggressive, angry and over the top advocate for your child.  You must be ready to put everything else in your life on a back burner, including your marriage, any other children you might have, your friends, your hobbies---all of it---in order to devote every single second toward the child with a disability.  You are supposed to fight everyone and everything in order to get the best life for your child.  Everything and everybody except your child is a potential roadblock, and you must be ready to mow them down to get what your child needs.  The result will be, of course, that by the end of the movie or run of the TV show, your child will either be "cured" or will be living the best possible life they can---of course doing things that experts said they could never do, of course surprising everyone with how far they have come, of course making you proud and making it clear that the ends justified the means.  The mother on "Speechless" is that kind of mother.

In real life, somehow it must be that mistakes are made here and there when handing out children with disabilities.  Sometimes, instead of the fierce mother they are supposed to get, they get someone like me, someone who avoids confrontation if at all possible, who is not comfortable demanding anything, who regularly takes her eye off the prize and doesn't follow through with every chance to "fix" her child, who is in fact often not even exactly sure what it is she should be fighting for, if she were inclined to fight.

When talking to a friend about my feelings toward "Speechless" and how I didn't find the mold of the fierce mother, she asked me "Well, what is it you think Janey didn't get because you aren't that way?"  That was an excellent question, and the answer was...really nothing.  Of course occasionally I do wish there were programs for Janey that don't exist, but in terms of what she really needs, she has always gotten it.  I am very lucky that way.  I have to thank the Boston public schools for that.  I've had nothing but excellent teachers for her, nothing but caring administrators, aides, therapists, ABA workers, bus drivers...I've been incredibly lucky.  I can't quite say that's been the case with medical issues, but with the schools, I've somehow been able to get by without ever once having a screaming match at a meeting, or even anything close.

Of course, I do know that I've got some advantages.  I speak English, I'm fairly good at understanding the system, I am able to attend meetings without fear of losing a job, I have transportation, I can read---I don't take any of that for granted.  I know and have met mothers that care for their children every bit as much as I do, but because of various issues, can't work within the system as I do.  I think about Tony's mother a lot.  If she had had a child with autism, she wouldn't have known where to start.  She spoke very little English, she didn't drive, she didn't understand the US school system---she would have been lost.

In an ideal world, everyone would have had the great experience I've had with their child's schools.  We don't live in an ideal world.  I know part of why I am able to not be the fierce mother is because of the work of fierce mothers that came before me, that demanded their children get an education at all.  I respect that very much.  However, I think the media has something to answer to in putting out there a stereotype of a fierce mother.  I think it leaves many parents ready for fights that don't have to happen.  It also gives a huge advantage to those with the means and skills and money to hire people to fight for them---lawyers or advocates or the like.  It's why recent investigations in Massachusetts showed a huge gap between what kind of services kids in rich vs. poor school systems get.

My strong feeling is that schools and parents should be a team, working together to give children what they need.  I'm extremely lucky that is what I have experienced.  But if I relied solely on the media to get an idea how I should view the school/home relationship, I'd see it as a battle with the school on one side and me on the other.  And because of this, I think sometimes schools are expecting every mother to be ready to fight that battle.  They might be waiting for demands from parents, and many parents are ready to make those demands.  I feel in many cases, that is how resources are handed out---by seeing who demands them.  That infuriates me.  It makes me sick, really.  What about the parents who don't demand---because that isn't their nature, or because they simply have barriers to understanding what they even COULD demand?  It is horrifying to me to think that their children might not get what they need while the children of those who know how to play the system do.

I'd love to see a TV show where special educators and parents work together, where the incredible dedication and hard work and love of both are shown.  I'd like to see a mother I could relate to in the media, a mother who isn't fierce but still fiercely loves their child.  I'd like to see some teachers and therapists like the ones I've known, like the ones I met with today at Janey's school, who care about my child deeply, who provide her with the best education they can (and provide me with the respite school gives me).  I'd like to see a child on TV with Janey's kind of speechlessness.  Until then, I'll avoid one-dimensional portrayals of special needs mothers.

Thinking about Rosemary Kennedy

I just finished reading "Rosemary--The Hidden Kennedy Daughter" by Kate Clifford Larson.  It's a very well written and fascinating account of the life of Rosemary, the eldest daughter in the family that included JFK and Teddy Kennedy.  My mind is swirling with thoughts about the book and her life.

There were really two lives of Rosemary.  One is before she had a lobotomy, one is after.  Before, she was what I'd call mildly intellectually disabled.  Certainly she could do many things Janey can't---read at a 4th grade level, write letters, talk quite well---she functioned well enough to be presented to the Queen of England without anyone realizing she had a disability.  But then, as she entered her early 20s, mental illness started to complicate her life.  She became angry and aggressive, and it became harder and harder to accommodate her needs.  Tragically, her father decided to have her undergo a lobotomy, which went horribly wrong.  After that, Rosemary was severely physically and mentally affected. She did recover slightly in some ways, and occasionally did speak in sentences, and although she lived out her life in a house on the grounds of a nursing home, cared for by devoted nuns, starting about 20 years after the procedure, she did quite often visit her family and was part of their lives, until she died in her late 80s.

Several things struck me very much about her story.  One of them is how even having all the money and power in the world wasn't able to substantially change her functioning.  Sometimes I think "if only I had the money to get Janey the very most cutting edge care, all the devices and lessons and private schools and aides I could imagine..."  But in reality, I truly feel that most of us, Janey and Rosemary included, learn what they are able to learn and do what they are able to do if they are loved and given the chance.  You can make sure they learn what they are able to learn, but you can't really change what that level of ability is.  When I look at other kids I've met at Janey's schools, I see that.  Some make tremendous progress.  Some don't.  They are given the same kind of teaching, the same kind of opportunities, but in many ways, we are all going to be who we are going to be.  And that's not a bad thing, necessarily.  It leads me to what Rosemary didn't seem to get from her parents---acceptance.

Rosemary was moved from school to school, from program to program, in hopes of making her "normal".  When I look at what she was in her early life, I have to admit I think I'd be thrilled if Janey was able to do the things she could do.  But I don't think it ever was considered to just work with what she had, to say "let's find a way to give her a good life with the abilities she has right now"  I wonder if that had a part in her lashing out eventually.  I think about what it must feel like to be constantly pushed to do or learn things that are beyond one's ability.  If someone decided to spend all their time trying to teach me calculus, or even legible handwriting, or gymnastics, or hairdressing, or a number of things I can't do and I honestly don't think I'm capable of doing, I can't even imagine how upset I'd feel after just even a few hours.  If this went on for years, I think I'd be very, very ready to lash out in any way necessary to get it all to stop.  I don't blame her parents.  In many ways, they were ahead of their time.  They wanted to give Rosemary the best life they could, and in their time, that would be by making her not disabled, and like so many desperate parents, they did everything they could to try to do that.

There's a fine line, of course, between teaching someone what they CAN learn and not pushing them to do what they CAN'T learn.  I know it's sometimes impossible to know where that line is.  But I think our kids let us know.  Janey learns eagerly, when she is able to.  I have to trust her enough to believe that she isn't trying NOT to learn.  I have to believe that the fact she can't read or usually talk in full sentences or be completely toilet trained after many, many years of working on those things means that to some extent, there is a reason she can't learn those things.  It's not giving up to admit that, I don't think, any more than it's not me giving up that leads me to say I'll never be a mathematician or a gymnast or a hairdresser.  It's a matter of deciding whether to go with strengths or not.

In the end, although Rosemary's life story is very sad in a lot of ways, I was hugely touched by something her sister Eunice, founder of Special Olympics, said in a speech in 2007 "Tonight, I want to say what I have never said before: more than any one single individual, Rosemary made the difference"  She was referring there to her influence on her brother's presidency, but in many ways, the fact that she was part of a hugely influential family who devoted much time and energy and money to helping the disabled means that she made a difference for probably millions of lives.  She mattered, as does Janey, as do all our daughters and sons with disabilities.

"Participate effectively and maintain a safe environment"

I took Janey to a parade yesterday, along with my friend Maryellen.  I don't think Janey has been to a parade since she was three or so.  Overall, she loved it.  Parades pretty much have Janey's favorite features---music, dancing, being outdoors and able to move around and be loud if desired, all that.

For me, a few parts of the day were bittersweet.  A dance troupe played a huge part in the parade, a troupe from a big local dance studio.  I'm not a dance person, but I am pretty sure if Janey had followed a more typical course in life, she'd have been involved in dance.  She's amazing, in that she instantly copied every dance style she saw during the parade and did her own dance at the side of the street.  She got many smiles and waves with her high enthusiasm and her moves.  It was something watching her, doing something I couldn't do for the life of me.  As I watched the literally hundreds of young girl dancers go by, I kept thinking "Why isn't there a place for Janey among them?"  I found a list of dance programs in the Boston area for kids with autism.  I'm glad there are some, but like I've found so often, they aren't for Janey.  Here's what one of them said is a requirement for participating--- "Students must be able to participate effectively in lessons or classes and maintain an environment that is safe for themselves and others."  Yeah.  Janey isn't going to participate "effectively".  She would probably not "maintain" the environment they are looking for.  She would love the class, she would probably learn, but as several of the five for so programs explicitly said, they are looking for "high functioning autism" kids.  And sometimes, I get mad about that.  They have every right to accept who they want to, but damn it, I wish there were programs that said something like "We will work with children at any level of functioning, if they have a love of dance"

I felt encouraged by much of Janey's behavior during the parade.  She's still been in a bit of a manic phase, and the weekend was trying at points, with her often going over the top from excitement to anger and screaming.  But a few years ago, I would not even have attempted something like this parade, even with the wonderful help of Maryellen.  As we walked toward the parade route, Janey ran ahead of me a bit, and I felt so happy she is able to do that now, and I know she will stop when I shout out to her to do so.  She's able to have that little bit of independence, which is a very nice thing for a 12 year old.  She stayed with us at the parade without having to have her hand held, and she seemed to understand that she needed to not go into the street where the parade people were.

There was one moment, though, when I was quickly reminded that I need to always be on guard with Janey.  Maryellen had an umbrella, as it was drizzling.  Janey wanted to hold it, and we think to twirl it on the ground.  Before either of us completely realized what was happening, she moved close to a couple small children and started wildly flinging the umbrella around.  It could have very easily poked and hurt the kids.  We grabbed it, apologized and folded it up.  But she is so fast that it's scary.  Sometimes I'm almost lulled into relaxing for a minute when we are out and about, and I just can't.

Janey watching the parade is in many ways a metaphor for what increasingly frustrates me about life for a child like her.  She can watch, she can enjoy, but she can't really participate.  She dances on the sidelines.  And even on the sidelines, I can for a few minutes just feel like she's any other parade watcher, but if I let my guard down, things can suddenly turn.  I can't ever relax.

Because I am always arguing back and forth with myself, I'm of course thinking "She doesn't know she isn't participating.  She is happy dancing on the side."  And that's true.  Fine.  But imagine Janey belonged to almost any other distinctive group of kids.  And imagine that the group she belonged to was a group simply not welcome, not included, in basically everything.  In the past, we might have said "That's just the way it is.  It's too hard to include that kind of kid.  They don't need to be included to be happy."  Well, sometimes I have a radical idea that Janey SHOULD be able to be included in ANYTHING that other kids are included in.  Or at the very least, if there is an activity that is said to be for kids with special needs, or even specifically autism, that it should include ALL kids with autism.  Sure, it would take some doing.  But why not?  Why can't it be that way?

I do live in the real world.  I think often of Janey's old school, which tried harder than anyplace to live that dream of including all kids, and in the end, wasn't able to do that for Janey.  And thinking about that, even after several years, can make me cry.  I don't have solutions, or answers, really.  I accept, at many levels, that in the real world the challenges of Janey's behavior do leave her out of the mainstream.  But sometimes, I dream of a world where she's truly and totally included.

A Little Beyond Happy

Janey's wonderful weekend last weekend has been followed by what often follows some of her very best times---a bit of what I can for the lack of a better term "mania".  I know it's not classic mania, probably, and I know that is a loaded term and that it has a clinical meaning and that using it says something specific....but that is a shorthand term I've come to use in my mind for how Janey has been this week.

It's been milder than in the past, as her unhappy periods tend to now be also.  In the past, she often would sleep extremely little during these periods, going to bed very late and waking very early.  We haven't seen that---she seems to be in a teenager style sleep mode a little young, and it's hard to wake her up for school although she goes to bed quite early.  But it's there, and it can be quite something to deal with.

So what does she do when she's "manic" (and I will just call it manic without quotations from here on in!)?  She repeats phrases, over and over and over, far beyond the typical delayed echolalia.  Last night, it was "Okay, all right, I've learned my lesson already!".  Over and over, in the exact same tone, probably 500 times.  I think it might be a phrase from a movie she's watching on Netflix a lot, "Home", or it might be from an episode of a new Scooby Do series on there also, just based on tone of voice.  She eats, huge amounts.  After school yesterday she ate a whole container of feta cheese, a full jar of salsa, a good amount of frozen yogurt and some cookies, and then ate a ton of dinner---homemade chicken nuggets, and still was asking for food at bedtime.  And she laughs---a laugh that is sort of like a laugh track, unvarying and not terribly related to anything going on.  The laugh can turn into almost a shriek, especially out in public.  Sometimes it sounds close to a scream, and it takes looking at her for a minute to figure out it isn't.

One of the toughest things she does when manic is be a little free with her teeth.  It's not biting, but it's pushing her teeth into me, in a way that's hard to explain.  It can hurt, and it's scarily close to a bite.  Last night she also started hugging me in a way that turned into elbowing me.  I don't think she realizes she is doing these things, and telling her to stop and backing away doesn't seem to change much.  She goes right back to doing it as soon as she can, laughing at whatever I say in trying to stop her.  

Usually these manic periods don't last long.  I'm glad they don't, although with their lessened intensity, they are easier to take than they used to be.  But they still make me kind of sad for Janey.  It's like even feeling happy and good turns into something else for her.  It feels like playing a happy song and having it get stuck, repeating the same happy laughter-filled phrase until it loses all meaning and is like a trap.  And the mania seems to often be followed by a plunge into screaming and sadness, from one kind of intensity to another.  I am crossing my fingers and hoping very much that this time, that cycle is broken and she can go back to the amazing relaxed happiness of last week.  Please.

The best weekend ever

The title says it all.  This past weekend with Janey was the best one we've ever had with her.

Janey, all weekend long, was happy.  Not manic happy, but very, very happy in a contented, sweet way.  There was not a single moment of tears or screaming.  She was smiling pretty much all the time.  It was amazing, truly amazing.  I would have given anything to be able to see this weekend during some of our darkest times.

We were able to do things that we are never able to do.  We took Janey to a new food place, Wahlburgers, and got takeout, which took a little while, and then ate it outside in the city.  I felt like I was living someone else's life.  We went to Savers, and Tony was prepared to take Janey out, for a ride or walk or whatever to keep her happy.  Instead, she was happy AT the Savers.  For 90 minutes.  Happy looking around, laughing, talking....amazing.  We sat back on Sunday night and watched two hours of old Family Feud episodes.  Janey watched with us, or played with her iPad, all in perfect contentment.  She slept well, she ate well....she was beyond a delight.

And of course, I want to figure it out.  What was different?  How can I capture what happened and repeat it?

I have a few theories.  I think she's very, very happy at school this year, and that translates to happy at home.  I wonder if she has pain of some sort a lot of the time, and it was gone for the weekend.  It was the first cool weekend of fall, and perhaps she loves fall and hates the heat, like me.  Tony and I had little else going on, and gave her a lot of attention.  We were both happy, after a long week, and she picks up on emotions tremendously.  Who knows?  I almost hate to write about the weekend, for fear of the jinx, but I had to.

There were lots of times when I thought it would never be like this.  There were weeks and months and even years where it was so hard I honestly sometimes felt I couldn't go on.  And however hard it was for me, I know it was so much harder for Janey.  No-one should ever be unhappy as much as she was.  I have so much joy when I see her happy.  It makes me realize that is all that matters with her.  The autism makes no difference.  The intellectual disability makes no difference.  It's her happiness that makes the difference.

I will try not to over-analyze.  I just wanted to record this weekend before it slipped into the vast territory of past time.  I wanted to have a record of how it can be.  And I wanted to thank Janey, and tell her I hope with all my heart that happiness like she has had lately can be the default state for the rest of her life.

Advanced "Welcome to Holland"

I had a rough day yesterday while Janey was at school.  It had nothing to do with her---it involved worry and doctors that don't call back and midlife frustrations and general malaise and so on and so on.  She came home and lifted my spirits immensely.  She had such delight in the everyday afternoon and evening activities---having some cheese as a snack, walking to the ice cream store, hearing music on the way back and dancing, seeing Daddy come home, getting some Chinese food for dinner---it was great.  She even made us laugh with a new phrase.  She asked Tony for a ride and he said "Sure!" and she said "Are you joking me?"  She was a delight.

And for a brief moment last night, as I thought about it all, I was thinking how although she is very different than most 12 year old girls, there are many parts of who she is that are lovely in their differences.  She loves us wholeheartedly.  When Tony got her off the bus instead of me on Wednesday, upon seeing me when I got home she gave me a huge hug, just thrilled to see me again.  She has fun with very small pleasures---a song she likes, a trip to the ice cream store or McDonalds, a video that she's seen over and over.  She doesn't long for what she doesn't have---she isn't asking for Ugg boots or a North Face jacket or whatever else is in right now (and those might be totally out---I don't know, and that's part of it!)  For a minute, I was thinking "it's a different life, but it's a good life!"

Then it hit me---wasn't that awfully like what "Welcome to Holland" says?  Welcome to Holland--a well meant story written by a kind and caring mother about her specific circumstances that has turned into something tossed to every special needs parents as a way of saying "Quit all your griping!"  Of course I am being a little sarcastic there, but that's often what it feels like, like a way those who have never lived the life can say "What's the problem?  It's not the same as most lives, but it's just as wonderful in its own way!"

And I felt angry, really angry.  I felt angry for many reasons.  The big one was that having an afternoon like yesterday with Janey wasn't something that just happened.  It has taken many years to get to where we sometimes are today.  It has taken the dedication of many people---Tony and me, yes, but also many other people---all the people in the Boston Public Schools who have worked with Janey over many years (and they are an amazing bunch of people), the doctors and psychiatrists who have helped us find what seems like the right combination of medications, Janey's brothers, the people in the Hyde Park community like our neighbors and store workers who are happy and excited to see Janey no matter how she acts, my friends, both those I know in person and those I have met virtually, who give me ideas and support and love, the wider autism community who has shared their experiences and advice----it's taken a huge amount of people and work and knowledge to get Janey to where she can have an afternoon like she did.  It didn't happen just by somehow arriving in the wrong country and accepting that I was in Holland and not Italy.

We like feel good stories.  We like happy endings.  What we don't always like is hearing that it takes work, it takes money, it takes resources, it takes tears and false starts and dead ends and heartbreak and sweat and dedication and so much more to get to those happy endings.  And they aren't endings, really.  I've read about something called the "end-of-history illusion".  We as humans often feel like the stage we are at right now is the evolved, end stage.  We see work and change and developments in the past, but we sort of assume the future will be steady, that we have done the work and now we just sit back and reap the benefits, and that is of course not true.  The future will hold as much work and as many changes as the past, most likely.

Our society is set up for people to travel to Italy, not Holland.  A trip to the special needs world is not just a different trip, it's one where none of the guide books help you, one where you have no hotel reservations, one where before and after the wonderful moments you might have, there are many times of confusion, frustration, fear and despair.  There are kind people in Holland, amazing people who do more than you would ever expect to help you, there are beautiful sights, but don't let anyone tell you that it's just another form of Italy.  It's not.

What Janey said about screaming

It's been a long week here, and it's only Wednesday.  Tuesday Janey had a scoliosis checkup at Mass General hospital, and today I had the special big event that comes with turning 50, a colonoscopy.  Monday I'd had a ultrasound to try to figure out why the Framingham Heart Study, which I am a part of, saw potential scarring in my liver as one of the routine research tests they do.  To top off the week, I have a mammogram this Saturday.  So not my favorite kind of week, and not Janey's, either.

The colonoscopy was fine, harder to prepare for than to have, and it didn't show any problems.  I don't know all about the liver tests yet, but what they saw was consistent with autoimmune liver disease, which I had some blood test positive for also.  I'm not letting myself get too worried, because I don't know enough yet to worry and I can't do much about it until I know more.  But this adds another potential autoimmune issue to a family pedigree full of them, and adds another bit to my feeling that Janey's autism is in some way autoimmune-driven.

The good news is Janey is almost done being screened for scoliosis.  They got a very good x-ray of her, which she stood still for in a booth-like place where she had to hold her hands up high.  She would not do that at all six months ago when we last went, so we were very proud of her, and it showed her curvature at a level low enough not to need a brace or surgery.  However, evidently the X-ray took up all her patience.  She was very ready to go after that, but we had to wait and see the doctor.  Janey let us know that she wasn't happy by means of her signature scream, loud and hysterical and I am sure heard by everyone in the hospital section.

When things calmed down and I was dressing Janey, and it was evident we were actually leaving, she said to me "I don't think there is any need for quite that much screaming!"  Well, that's a direct quote, but not one I had said that day at all.  I can't remember when I said it, but I think it was quite a while ago, when I had reached the end of my rope at some point.  It was one of Janey's longest utterances in a while.

What Janey said reminded me once again that nothing I say to her is unheard.  She listens very well.  She might not show any sign of it, or give any response to it, but she hears it and remembers it.  I need to always keep that in mind when I speak to her.

Last night, reflecting on all of it, as I was snuggling her to sleep, I said "Janey, I know you have a reason when you scream.  I might not know the reason, if you don't tell me, but there is one, I know.  You might hurt, or be scared, or be frustrated because you can't find the words to tell me what's wrong, but I know you are communicating when you scream.  I want us to find a way to tell each other what is wrong"  Janey didn't answer, but she gave me one of those looks that speaks volumes, a surprised and pleased intense look, a look that tells me as much as words could.

And so we go on.  We take it day by day.  When we have a tough day, we look to the next day.  When we have a good day, we don't take it for granted.  And by "we" I don't of course just mean our own family, but the larger "we", all of us with children that can't fully communicate, all of us with children that need us so very much.  It makes every fear, every concern, every health scare, so much more intense.  The stakes always feel high.  But we aren't able to have the luxury of thinking too far ahead.  We are needed too much in the present day.  And that's not a bad thing, to be needed that much.  Janey, sometimes maybe there IS a need for that much screaming, even if I say there isn't, but we will try to keep the screaming at a minimum and the hope at a maximum.

Two Non-Fluent Speakers

I read a lot of books about people going to live in cultures new to them.  It's an armchair travel thing---I doubt I'll ever really live that life, but for some reason, it fascinates me.  Often, the people in the books end up having conversations where both speakers are not fluent in each other's language.  They get by on the words they know from the other language, with a lot of guessing and a lot of misunderstandings.  It struck me today that that is what Janey and I do.  She's not fluent in English, and I'm not fluent in Janey-Language.

The double non-fluency can make communications very tough.  A good example happened this weekend.  Janey was crying, and said to me "Does your eye hurt?"  She often does that, reverses the pronouns and says what she wants me to say.  I asked her to use my hand to touch where it hurt.  That for some reason seems to work much better than having her point.  She took my hand and put it next to her right eye, and then tried to get me to poke at her eye.  I said "I can't poke you there, but let me look at the eye"  I didn't see anything, but it was obviously bothering her.  She then said "My eye is bloody!"  The eye wasn't bloody, but I was proud of how she worked hard to use her non-fluent English to tell me how upset she was over the eye.  I think it was a dry allergy type eye issue.  We took a shower and she felt much better.  But I wished so much we were able to better communicate, that she could have told me exactly how it hurt, that I could have reassured her that it looked fine and that it wasn't anything serious.

Janey woke up this morning crying hard.  The crying is communicating, of course, but I can't understand the specifics of it.  I had no idea what was upsetting her.  We went through the regular morning routines, with the tears still flowing.  They lasted until she went out with Tony to wait for her school bus.  Then she instantly cheered up and was hugely happy getting on the bus.  Although I started the day saying to her "It's a school day!" as I always do when that is the case, I think she somehow wasn't sure it was really a day to go to school.  I think she was upset it was going to be another dull old day at home with Mama and Daddy.  That's my best guess, anyway.  I wish so much, more than I can possibly say, that she could tell me why she's sad when she is.  And I wish I could communicate back to her, that if my guess was right, I could have reassured her that it was indeed a school day.

If there was a way for Janey to be fluent in English or me to be fluent in another other means of communication that would work for her, I would do it.  It wouldn't have to be spoken, of course.  If she was able to  use sign language, or typing, or an iPad talking program, or anything at all, I would do anything to communicate that way with her.  But we have not found that way.  We both remain non-fluent in each other's language.  The onus is on me.  I truly think Janey thinks I can read inside her mind.  I think she thinks I know what she is thinking.  I can't even start to imagine how frustrating it must be when she is clearly thinking what she needs, and I don't respond.  I think she resorts to her English and to crying and screaming when she thinks I'm not responding.  So often, she'll bring me the remote and I'll say "What do you want to watch?" and she'll answer "That one"  I'm sure she has a specific show in mind, and she just can't understand why I insist on making her say it in spoken English, which is so often a struggle for her.

Until we find a common language we can both be fluent in, I will keep trying to work on better understanding what Janey says to me.  I will keep trying to help her better understand and use spoken English.  I dream of the day we can communicate with ease.